Its been a long time since the last blog so will try and keep things brief. Hopefully our time away from the blog is an indicator our time has been adjusted to living life again.
Nathan has had a month of going to school and is adjusting. Every day has its trials and tribulations but he is progressing which is the main thing. He has also gotten back into hockey and music. Our last visit to the clinic was Dec 14 and although his neutrophils were good, his platelettes were only 47. Nathan was taken off of his chemo drugs for the week and he didn't play any sports this week. We will go again to the clinic on Monday to see where his counts are at.
Carter and Nathan had their Christmas school performance on Tuesday night. Roughly 320 kids on and off the stage and they did amazing. Carter says he doesn't like to sing but does so well at it. Nathan was tired but still managed to get on stage and participate so we were happy to see him up there. Carter also had his piano recital Friday night and did very well. It amazes me how they don't mind getting up on stage.
I have been busy shopping and wrapping while Arron has been busy making the skating rink in the back yard. He tried to level out the area where the rink was going and he got it close but it is taking a lot of effort to flood it.
The kids are excited for Christmas and we are busy with preparations. Hopefully one more solid day tomorrow and we should be able to enjoy next week. We will have a nice break before the start of the new year brings my return to work full time with days off for Nathan's clinic visits.
Saturday, December 19, 2009
Saturday, November 21, 2009
Maintenance Day 6
It feels like its been a long week....
Carter had surgery yesterday and he did so well. He was nervous about the procedure but was very mature about the entire situation. We arrived at the hospital around noon and by 2:45pm he was in with the Dr for repair of the hernia. His doctor confirmed that he had an inguinal hernia and would have had it from birth. When the testes descended the passage didn't completely close leaving a small hole that was allowing fluid to pass. The dr indicated that quite often it goes undetected until teenage years when a sport injury causing a larger hernia resulting in emergency surgery. Carter handled the anestia well and woke good. he was really sleepy though. We were home around 6pm.
Today Carter moved slowly and carefully but wasn't in any discomfort. So we will see how tomorrow goes before determining when he will go back to school.
Nathan had a week of adjusting. Since his counts were high enough he went to school Wed and Thursday morning and then all day Friday. Its hard going back after being gone. His friends are there but there is not routine to go out with them for recess so that left Nathan disappointed. Time will fix that. He also had a teacher come twice last week, an hour each time to try and get him caught up. It was cute tonight as he asked if tomorrow was a school day but I said no. So he asked if we could make it a school day at home. He would like to get caught up so that he can get back on chart again. I wonder where he heard that line from!
Today was the last dose of the steroid for 3 more weeks. Man that throws Nathan all over the board emotionally. He was flying high today though and was determined he wasn't going to hockey. I convinced him he should try and when we got there, comedian Nathan appeared. He had the kids in the dressing room in stiches. 3 times dressed and 3 times to the bathroom. I had to take his skates off once as they were on too long. And then standing and waiting to go on the ice, I over heard another parent say her younger son was sick with the Chicken pox. The older son plays with Nathan and the younger boy there at hockey and was in the dressing room when Nathan and the other kids were getting dressed. So how close of contact does one need to be to be at risk of getting the virus? The concern with a compromised immune system is inability to fight it. So the clinic has said if in contact with someone with the virus Nathan would need a special shot in order to help his immune system. I don't know the stage other than was still blistering and was really itchy. And what is the definition of in contact. The boys were at least 10 feet apart. But then tonight I had a thought - the mom brought the jerseys so can the virus transfer to clothing? So Monday I will need to call the clinic to find out if we need to do anything. Frustrating to say the least.
Tomorrow will be a quiet day - cleaning and hopefully get some decorating done. The outside is done and hope to start working on the inside. We are looking forward to enjoying the season's traditions this year and hoping for a little normalcy.
Carter had surgery yesterday and he did so well. He was nervous about the procedure but was very mature about the entire situation. We arrived at the hospital around noon and by 2:45pm he was in with the Dr for repair of the hernia. His doctor confirmed that he had an inguinal hernia and would have had it from birth. When the testes descended the passage didn't completely close leaving a small hole that was allowing fluid to pass. The dr indicated that quite often it goes undetected until teenage years when a sport injury causing a larger hernia resulting in emergency surgery. Carter handled the anestia well and woke good. he was really sleepy though. We were home around 6pm.
Today Carter moved slowly and carefully but wasn't in any discomfort. So we will see how tomorrow goes before determining when he will go back to school.
Nathan had a week of adjusting. Since his counts were high enough he went to school Wed and Thursday morning and then all day Friday. Its hard going back after being gone. His friends are there but there is not routine to go out with them for recess so that left Nathan disappointed. Time will fix that. He also had a teacher come twice last week, an hour each time to try and get him caught up. It was cute tonight as he asked if tomorrow was a school day but I said no. So he asked if we could make it a school day at home. He would like to get caught up so that he can get back on chart again. I wonder where he heard that line from!
Today was the last dose of the steroid for 3 more weeks. Man that throws Nathan all over the board emotionally. He was flying high today though and was determined he wasn't going to hockey. I convinced him he should try and when we got there, comedian Nathan appeared. He had the kids in the dressing room in stiches. 3 times dressed and 3 times to the bathroom. I had to take his skates off once as they were on too long. And then standing and waiting to go on the ice, I over heard another parent say her younger son was sick with the Chicken pox. The older son plays with Nathan and the younger boy there at hockey and was in the dressing room when Nathan and the other kids were getting dressed. So how close of contact does one need to be to be at risk of getting the virus? The concern with a compromised immune system is inability to fight it. So the clinic has said if in contact with someone with the virus Nathan would need a special shot in order to help his immune system. I don't know the stage other than was still blistering and was really itchy. And what is the definition of in contact. The boys were at least 10 feet apart. But then tonight I had a thought - the mom brought the jerseys so can the virus transfer to clothing? So Monday I will need to call the clinic to find out if we need to do anything. Frustrating to say the least.
Tomorrow will be a quiet day - cleaning and hopefully get some decorating done. The outside is done and hope to start working on the inside. We are looking forward to enjoying the season's traditions this year and hoping for a little normalcy.
Monday, November 16, 2009
Maintenance Day 1
The Maintenance phase is finally here. Where did the year go. The memories of Nathan's diagnosis is fresh and seems like yesterday when we started down this road.
4 days off from all medications proved a wonder to Nathan's body as his neutrophils bounced up to 1.22 - high enough to start the Maintenance phase of treatment. Maintenance is supposed to be the easiest of all the phases but it is the longest. Starting today it will take Nathan to March 9, 2012 or more exact, today is day 1 of 845 days of preventative treatment.
The cycle is 85 days and we just keep repeating the 85 days until the end of treatment. So 5 days at the start of every 28 days, Nathan will have Dexamethasone (steroid) for 5 days. Every day before bed he will have Mecaptopurine or 6MP. This one will take some time to get used to administering as it needs to be one hour before eating or 2-3 hours after eating. A new label says no milk products in the 2-3 hour window. We will need clarification on that one as no milk before bed for 2 plus years isn't going to happen. Once a week starting next Monday, Nathan will have Methotrexate by pill before bed. This drug made us chuckle as one dose is 7 tiny pills. When we asked the pharmacist why it didn't come in a bigger pill, Nathan's response was "no problem, I can take 7 pills at once". The pharmacist's response was this drug is the one that knocks the white blood cells so quite often the dosage is changed and rather than throwing out pills, you can simply remove a couple if need be.
Although this is new and we were expecting to go for blood work in a week or two just to see where Nathans white blood cell count is at, we are not to go in until December so every 4 weeks unless at that time his counts are low. So that is the news on Nathan.
Carter is not feeling well. I am not sure if he is in the less than 10% category that has side effects from flu vaccinations or if it is just a coincidence. Thursday evening was his vaccination. Friday he was feeling well but looked very pale. Saturday he had extreme fatigue and by Sunday afternoon he put himself for a nap as he wasn't feeling well. 2 hours later with me waking him up, he woke with a fever, chills and body aches. He slep a full night Sunday and woke this morning with a slight fever. While we were at the clinic, he wasn't able to keep water down in the morning but settled his stomach by noon. The remainder of the day was resting. The temperature returned in late afternoon and after supper he again put himself to bed. When I say after supper I mean 6:30pm. One thing I admire about Carter is that when he isn't feeling well, he knows to sleep. So sleeping he is.
With everything going on, I managed to slip away this afternoon to the Prairie Land H1N1 vaccination clinic. I was told by the Counsellor at the Cancer Clinic that our request was heard and that although it wasn't advertised, care givers of children receiving chemotherapy who could not themselves receive the vaccine were now eligible to receive it. So I thought I would try again. I was asked if I had an underlying health problem and I said no and explained the situation and low and behold they said "oh, yes, you are a primary caregiver and you qualify". 3 times a charm! My arm hurt for a while but I made sure to move it around. I am expecting stiffness tomorrow and hopefully that will be all the side effect is. Nathan still does not get the vaccine as his lymphocytes need to be 1.5. With having treatment today and starting the new medications, his doctor would like to see where his counts will be before advising him receiving the vaccine. So Nathan has a minimum 4 week wait. At least all 4 of us now have had the vaccination and can hopefully minimize what we bring in for Nathan.
Well its been a busy day and who knows what tomorrow should bring so I should finish up. We will keep you posted.
4 days off from all medications proved a wonder to Nathan's body as his neutrophils bounced up to 1.22 - high enough to start the Maintenance phase of treatment. Maintenance is supposed to be the easiest of all the phases but it is the longest. Starting today it will take Nathan to March 9, 2012 or more exact, today is day 1 of 845 days of preventative treatment.
The cycle is 85 days and we just keep repeating the 85 days until the end of treatment. So 5 days at the start of every 28 days, Nathan will have Dexamethasone (steroid) for 5 days. Every day before bed he will have Mecaptopurine or 6MP. This one will take some time to get used to administering as it needs to be one hour before eating or 2-3 hours after eating. A new label says no milk products in the 2-3 hour window. We will need clarification on that one as no milk before bed for 2 plus years isn't going to happen. Once a week starting next Monday, Nathan will have Methotrexate by pill before bed. This drug made us chuckle as one dose is 7 tiny pills. When we asked the pharmacist why it didn't come in a bigger pill, Nathan's response was "no problem, I can take 7 pills at once". The pharmacist's response was this drug is the one that knocks the white blood cells so quite often the dosage is changed and rather than throwing out pills, you can simply remove a couple if need be.
Although this is new and we were expecting to go for blood work in a week or two just to see where Nathans white blood cell count is at, we are not to go in until December so every 4 weeks unless at that time his counts are low. So that is the news on Nathan.
Carter is not feeling well. I am not sure if he is in the less than 10% category that has side effects from flu vaccinations or if it is just a coincidence. Thursday evening was his vaccination. Friday he was feeling well but looked very pale. Saturday he had extreme fatigue and by Sunday afternoon he put himself for a nap as he wasn't feeling well. 2 hours later with me waking him up, he woke with a fever, chills and body aches. He slep a full night Sunday and woke this morning with a slight fever. While we were at the clinic, he wasn't able to keep water down in the morning but settled his stomach by noon. The remainder of the day was resting. The temperature returned in late afternoon and after supper he again put himself to bed. When I say after supper I mean 6:30pm. One thing I admire about Carter is that when he isn't feeling well, he knows to sleep. So sleeping he is.
With everything going on, I managed to slip away this afternoon to the Prairie Land H1N1 vaccination clinic. I was told by the Counsellor at the Cancer Clinic that our request was heard and that although it wasn't advertised, care givers of children receiving chemotherapy who could not themselves receive the vaccine were now eligible to receive it. So I thought I would try again. I was asked if I had an underlying health problem and I said no and explained the situation and low and behold they said "oh, yes, you are a primary caregiver and you qualify". 3 times a charm! My arm hurt for a while but I made sure to move it around. I am expecting stiffness tomorrow and hopefully that will be all the side effect is. Nathan still does not get the vaccine as his lymphocytes need to be 1.5. With having treatment today and starting the new medications, his doctor would like to see where his counts will be before advising him receiving the vaccine. So Nathan has a minimum 4 week wait. At least all 4 of us now have had the vaccination and can hopefully minimize what we bring in for Nathan.
Well its been a busy day and who knows what tomorrow should bring so I should finish up. We will keep you posted.
Thursday, November 12, 2009
ADI II Done Day 6
Finally some good news! Nathan's neutrophils have come to 0.66 so no more IV antibiotic! That was a nice jump from Monday. Nathan was excited to have Arron de-access him and he once again thoroughly enjoyed his bath.
So now that one child is on the mend, time to focus on another :). Several times we have questioned our doctor regarding Carter and swelling in the groin area, noticeably so after exercising or having a bath. Each visit he couldn't find anything. We requested awhile back for him to be sent to a specialist and so was able to get in to see a urologist at the end of October. It appears Carter has a small hernia that is allowing fluid in through the opening when he exercises. It has never bothered him as he has never complained of pain. I took him this morning for an ultrasound and he did very well. We were told it would be 4-6 months for surgery but there must have been an opening as we received a phone call indicating November 20th they could get him in. We are ever so thankful we live in Canada and have paid medicare!
Carter's school was eligibile for Kindergarten to grade 6 to get the H1N1 vaccincation tonight. We all took him but when told it was a 2 hour wait, we made alternate arrangements for Arron and Carter to get a ride home and I returned with Justin and Nathan. Nathan still needs to wait. His neutrophils and lymphocytes both need to be 1.0 for at least 2 days in a row before he can get the vaccination and have it work. So maybe next week he and I will be able to get it together.
And just so as not to leave Justin out, he is going to be a sweet talker like his Dad. Reading books tonight he looked at me and says, "I love your beautiful blue eyes". He generally does the "just lay with me for 2 mins" speech at bed time. So as we cuddled he started rubbing my back and then told me to rub his. Just before he went to sleep he kissed me on the nose and said I was the best mom ever. Moments like these melt my heart - just a little bit of sweetness at the end of a stressful day.
So now that one child is on the mend, time to focus on another :). Several times we have questioned our doctor regarding Carter and swelling in the groin area, noticeably so after exercising or having a bath. Each visit he couldn't find anything. We requested awhile back for him to be sent to a specialist and so was able to get in to see a urologist at the end of October. It appears Carter has a small hernia that is allowing fluid in through the opening when he exercises. It has never bothered him as he has never complained of pain. I took him this morning for an ultrasound and he did very well. We were told it would be 4-6 months for surgery but there must have been an opening as we received a phone call indicating November 20th they could get him in. We are ever so thankful we live in Canada and have paid medicare!
Carter's school was eligibile for Kindergarten to grade 6 to get the H1N1 vaccincation tonight. We all took him but when told it was a 2 hour wait, we made alternate arrangements for Arron and Carter to get a ride home and I returned with Justin and Nathan. Nathan still needs to wait. His neutrophils and lymphocytes both need to be 1.0 for at least 2 days in a row before he can get the vaccination and have it work. So maybe next week he and I will be able to get it together.
And just so as not to leave Justin out, he is going to be a sweet talker like his Dad. Reading books tonight he looked at me and says, "I love your beautiful blue eyes". He generally does the "just lay with me for 2 mins" speech at bed time. So as we cuddled he started rubbing my back and then told me to rub his. Just before he went to sleep he kissed me on the nose and said I was the best mom ever. Moments like these melt my heart - just a little bit of sweetness at the end of a stressful day.
Tuesday, November 10, 2009
ADI II - Done day 4
Nathan's neutrophils are finally on the rebound....
Yesterday we were able to de-access him after his 6:30am medication, he was able to have a good morning including a nice long bath and then we went to the clinic for blood work. We didn't have to wait around so was nice to come straight home.
A phone call around 3pm informed us his WBC was 1.03, hemoglobin 88, platelettes around 200 and neutrophils were 0.33. It was a big relief to hear that Nathan had turned a corner. He is getting a little stir crazy being in the house all the time so we are looking forward as much as he is to having enough neutrophils to be comfortable letting him out.
Thursday we will go for another blood test to see if Nathan's neutrophils are at 0.50. As soon as we hit the mark Nathan will be off the IV anti-biotic. I am hoping that will happen Thursday in order to give his body a break - no medication, no hospitals and not being accessed - at least for 4 days.
Yesterday we were able to de-access him after his 6:30am medication, he was able to have a good morning including a nice long bath and then we went to the clinic for blood work. We didn't have to wait around so was nice to come straight home.
A phone call around 3pm informed us his WBC was 1.03, hemoglobin 88, platelettes around 200 and neutrophils were 0.33. It was a big relief to hear that Nathan had turned a corner. He is getting a little stir crazy being in the house all the time so we are looking forward as much as he is to having enough neutrophils to be comfortable letting him out.
Thursday we will go for another blood test to see if Nathan's neutrophils are at 0.50. As soon as we hit the mark Nathan will be off the IV anti-biotic. I am hoping that will happen Thursday in order to give his body a break - no medication, no hospitals and not being accessed - at least for 4 days.
Saturday, November 7, 2009
ADI II - Done
On Friday Nathan had his last treatments for the Augmented Delayed Intensification phase and he did wonderfully. He fell asleep on the way to the clinic so I had to carry him and Shelley's monstrously heavy green go-to-the-clinic bag. Got him into the playroom and laid him down on a reclining chair and went - what the heck?! The playroom is now simply a glass cage for the kids. There is nothing left in there, no games, no puzzles and no toys. Due to the H1N1 scare, they have taken anything out that could transmit the flu from one child to the next. Sure makes for a boring playroom, I'm glad we are not at the 4 times a week spot in his treatment. Nurse Andrea managed to draw his blood and hook up his IV all while he was sleeping since he is still accessed. Shelley showed up shortly after and we let Nathan sleep for awhile. He woke up after an hour or so and we were ready to go get his leg needles. And once again Nathan did awesome; the first needle went very well but then he got apprehensive before the second one. We did finally get through that one and now, as long as we stay on track, NO MORE LEG NEEDLES - WOOHOO!!!
Shelley has been doing a wonderful job giving Nathan his antibiotics. I'm not sure she could handle a career change to nursing but she certainly would have a head start on more than a few required skills. Nathan has being doing well at home but he keeps reminding us that he would like to go visit friends. We keep telling him that he has to wait until his counts are higher and he is feeling better. I do not know if it is the new antibiotic or just what it might be but he has complained about feeling nauseous these past couple of days. Speaking of counts, on Friday his WBC counts went down again but his Neutrophils stayed the same. WBC was 0.67 (just as reminder, normal is 5.0-15.0), RBC was 3.08, Hemoglobin was low at 82 but platelets were fine at 158. Something is keeping those darn white blood cells down and we really need it to stop so that the cell counts cane come back up.
Rick asked us on Friday if we had gotten our H1N1 shots yet and we explained that we were not on any of the high risk lists yet, and though Nathan could have starting on Saturday, his lymphocytes are not high enough to get the vaccine. He agreed that this wasn't right and was going to look into it for us as well. I do not expect anything to come of it but it never hurts to have another advocate on our side. There are plenty of other families in our situation and I think it is a scenario that has fallen through the cracks.
Carter had a hockey game this morning, getting to play goal, so Arron took Justin with him to the game. Nathan challenged mom to yet another game of Wii and then had a visist from his friend Matt. Nathan sure is missing the social activity and so are his parents! Short term pain for long term gain is the reminder but sometimes hard to remember.
Tomorrow will be another day to try and get life back into the swing of things. This lack of routine is difficult.
Shelley has been doing a wonderful job giving Nathan his antibiotics. I'm not sure she could handle a career change to nursing but she certainly would have a head start on more than a few required skills. Nathan has being doing well at home but he keeps reminding us that he would like to go visit friends. We keep telling him that he has to wait until his counts are higher and he is feeling better. I do not know if it is the new antibiotic or just what it might be but he has complained about feeling nauseous these past couple of days. Speaking of counts, on Friday his WBC counts went down again but his Neutrophils stayed the same. WBC was 0.67 (just as reminder, normal is 5.0-15.0), RBC was 3.08, Hemoglobin was low at 82 but platelets were fine at 158. Something is keeping those darn white blood cells down and we really need it to stop so that the cell counts cane come back up.
Rick asked us on Friday if we had gotten our H1N1 shots yet and we explained that we were not on any of the high risk lists yet, and though Nathan could have starting on Saturday, his lymphocytes are not high enough to get the vaccine. He agreed that this wasn't right and was going to look into it for us as well. I do not expect anything to come of it but it never hurts to have another advocate on our side. There are plenty of other families in our situation and I think it is a scenario that has fallen through the cracks.
Carter had a hockey game this morning, getting to play goal, so Arron took Justin with him to the game. Nathan challenged mom to yet another game of Wii and then had a visist from his friend Matt. Nathan sure is missing the social activity and so are his parents! Short term pain for long term gain is the reminder but sometimes hard to remember.
Tomorrow will be another day to try and get life back into the swing of things. This lack of routine is difficult.
Wednesday, November 4, 2009
ADI II Day 52
We're home!
And it was time to go to. Nathan was starting to get a little cabin fevered the past couple of days and was acting up a little more - nothing like last time but you could tell he was ready to get out. Today, as we were waiting for discharge papers, Nathan was literally bouncing off the walls, bed, chairs and everything else in his room. We finally left the hospital by 4pm and his brothers were very happy to see him come home. They all were real attentive with each, I wish it could be like that more often (but without the hospital visit of course). The only trouble we had this evening was that after two weeks of hospital food Nathan ate very well at supper, and after two weeks of inactivity he get right back into the action of running around with his brothers, and that let to a little boy vomiting in the hallway and scaring his brothers off! It was high volume and very stinky but it gave us an excuse to finally get him in the bathtub after a week of not bathing. Bathtime is quite a bit more challening while he is accessed. Normally we would put a large opsite bandage over Nathan's accessing needle but his skin tends to burn from the adhesive so we let it stay uncovered. That presents all sorts of challenges as well. And then, of course, none of the boys wanted to go to sleep and they all wanted a parent to sleep with them. They are finally down.
Shelley and I decided on the Cefepime course of action. Every 8 hours Nathan gets a dose by syringe so that means that Nathan is still accessed but he does not ever have to be hooked up to Frank (IV pole). And we have scheduled his dosages for 10:30pm and 6:30 am so those two should be done while he is still sleeping so he only needs to do one while awake. Nathan is excited to have Shelley and I as his nurses again. As I stated yesterday, Cefepime is from the penicillin family and is another big gun (broad spectrum) antibiotic. Nathan is scheduled to take this for two weeks or until his Neutrophils reach .5. If after two weeks we still aren't at .5 then we have to re-evaluate and see where we go next.
The blood counts today were a little confusing as well. His WBC had gone down and so we assumed his Neutrophils had correspondingly dropped as they always do BUT this time the Neutraphils went up from .05 to .08 and so that is still a long way from the .5 but maybe headed in the rigth direction. Nathan also had his second last set of leg needles today and he has been doing awesome. The nice thing is that we have had a different nurse each time (today was Adam) and Nathan hasn't balked at that like he usually does. Two nurses always come in to do the leg needles and we inform them that we do them one at a time, and then Nathan picks which nurse to do the first one. Every time he has picked that same nurse to do the second one as well so that has to be good for their confidence. He had no issues whatsoever doing the leg needles - it was wonderful.
We just wanted to make sure to let everyone know that though we had some frustrating moments at the hospital, our stay this go round was really good. All of the nurses were friendly and worked well with Nathan; the program coordinator Shaylene was wonderful with Nathan; the Cancer Center people were very accomodating when we needed them and a few of them even came to visit while Nathan was on the ward; the support staff (janitors, orderlys, etc) became involved with Nathan; and the doctors worked with us a little more than in the past in order to find a treatment that we were comforatable with. Kudos to our health system on this stay.... though the hosptital food could still use some work! Now here is hoping we don't have to experience our health care system for a couple of years....
And it was time to go to. Nathan was starting to get a little cabin fevered the past couple of days and was acting up a little more - nothing like last time but you could tell he was ready to get out. Today, as we were waiting for discharge papers, Nathan was literally bouncing off the walls, bed, chairs and everything else in his room. We finally left the hospital by 4pm and his brothers were very happy to see him come home. They all were real attentive with each, I wish it could be like that more often (but without the hospital visit of course). The only trouble we had this evening was that after two weeks of hospital food Nathan ate very well at supper, and after two weeks of inactivity he get right back into the action of running around with his brothers, and that let to a little boy vomiting in the hallway and scaring his brothers off! It was high volume and very stinky but it gave us an excuse to finally get him in the bathtub after a week of not bathing. Bathtime is quite a bit more challening while he is accessed. Normally we would put a large opsite bandage over Nathan's accessing needle but his skin tends to burn from the adhesive so we let it stay uncovered. That presents all sorts of challenges as well. And then, of course, none of the boys wanted to go to sleep and they all wanted a parent to sleep with them. They are finally down.
Shelley and I decided on the Cefepime course of action. Every 8 hours Nathan gets a dose by syringe so that means that Nathan is still accessed but he does not ever have to be hooked up to Frank (IV pole). And we have scheduled his dosages for 10:30pm and 6:30 am so those two should be done while he is still sleeping so he only needs to do one while awake. Nathan is excited to have Shelley and I as his nurses again. As I stated yesterday, Cefepime is from the penicillin family and is another big gun (broad spectrum) antibiotic. Nathan is scheduled to take this for two weeks or until his Neutrophils reach .5. If after two weeks we still aren't at .5 then we have to re-evaluate and see where we go next.
The blood counts today were a little confusing as well. His WBC had gone down and so we assumed his Neutrophils had correspondingly dropped as they always do BUT this time the Neutraphils went up from .05 to .08 and so that is still a long way from the .5 but maybe headed in the rigth direction. Nathan also had his second last set of leg needles today and he has been doing awesome. The nice thing is that we have had a different nurse each time (today was Adam) and Nathan hasn't balked at that like he usually does. Two nurses always come in to do the leg needles and we inform them that we do them one at a time, and then Nathan picks which nurse to do the first one. Every time he has picked that same nurse to do the second one as well so that has to be good for their confidence. He had no issues whatsoever doing the leg needles - it was wonderful.
We just wanted to make sure to let everyone know that though we had some frustrating moments at the hospital, our stay this go round was really good. All of the nurses were friendly and worked well with Nathan; the program coordinator Shaylene was wonderful with Nathan; the Cancer Center people were very accomodating when we needed them and a few of them even came to visit while Nathan was on the ward; the support staff (janitors, orderlys, etc) became involved with Nathan; and the doctors worked with us a little more than in the past in order to find a treatment that we were comforatable with. Kudos to our health system on this stay.... though the hosptital food could still use some work! Now here is hoping we don't have to experience our health care system for a couple of years....
Tuesday, November 3, 2009
ADI II Day 51
Nathan and I had a pretty decent night and day at the hospital. Nathan tried to start it early this morning as he wanted to get up at 5:30 am. The nurses were surprised when they came in for blood before 6am that he was wide awake and teasing them. He finally did stay down until after 7:30am so that wasn't nearly as bad as it could have been. One of the things I am starting to like about the hospital is afternoon naps with Nathan! Each afternoon we make him have a nap, and what the hey, I may as well lay down beside him and catch a few more zzz's since we were up a few times in the night.
The doctors talked to me quite a few times today trying to get Shelley and my decision for Nathan's treatments. First the resident Michael came to talk about 9am and I asked a few more questions for most of which he had no answers. Then he and Dr Mpofu came to talk to me about 11am while Nathan and I were in the playroom and I asked a few more questions and they were supposed to come back with answers. Dr Mpofu was not comfortable with a couple of the the options given to us (clavulin only or being released without any antibiotics). Then the resident came back at 1:30 pm for an answer and I told him that I was still waiting for their answers. And finally, the two doctors from infectious diseases, Drs McConnell and ???, came to find out what we wanted to do. They came armed with slides about Cipro and about how it might not be as bad as we think. She showed me 5 or 6 studies and their results but none of them were that compelling. I asked about any studies done with kids on chemotherapy (some chemo drugs also cause joint and tendon issues) who also get Cipro and she was not aware of any, and then she got excited as that is a study that they could do. Anyway, I talked with them for quite awhile, well over an hour, going over the different scenarios, our comfort levels and what we did not like about each. Finally after talking that long they offered another option, Cefepime. It is still a penicillin based antibiotic and so does not have the effects of the Cipro. It can be administered every 8 hours and only takes 5 minutes to give by syringe vs 40 minutes by IV pump for the pep/taz. It is a "big gun" type of anitbiotic however not quite as big as the pep/taz and it could also be a marrow suppressant like the pep/taz (could be the reason why the counts are not coming up). All in all It seems like a pretty viable option compared to the others. It does mean that Nathan would have to remain accessed for a couple of weeks which would limit his activities but we would be at home. And there no guarantees that he would not get sick while on it but it is much better than nothing.
Shelley and I are going to wait to see what Nathan's counts bring in the morning. They were up slightly today to .05 and the rest of his blood work was also up a little. I find it a little ironic that first the doctors were adamnant that we were not leaving until Nathan's counts were high enough, and now that that is taking awhile, they seem to be pushing that we leave... and ironic that we were pushing to leave earlier and now we are holding back and asking for more answers as they shove us out the door. Crazy!
Nathan had some fun today. The program coordinator brought out another new game called "Don't wake up Daddy" and we played it with a young lady volunteer named TJ. The story of the game is that that you have to try to sneak to the fridge for a snack without waking up the dad and Nathan thought it was quite fun. However after a few games Nathan had to bring the girl (TJ) back to his room to play Wii with him. I was laughing at the lines he used to get her there. He'll be just fine as a teenager!
We also took Justin for his H1N1 shot this evening. He cooperated completely, had no hesitation, was having fun AND THEN THE NURSE STUCK A NEEDLE IN HIM. And he howled! and howled! It took a few minutes and some snacks to get him to calm down. Then on the way back out to the van he was telling us how good he did, that he didn't cry and it only hurt a little bit. I hope he feels that same way if he has to get the booster in 3 weeks. After being scared about the line up all day we got to Prairieland Park at about 6:30pm. We walked through a ton of ropes cordoning off areas and making lines and walked all the way into the area where they were doing the needles. There were maybe one hundred people ahead of us (1/2 to 1/3 of that would have been the kids getting the needles) but if that place was full today and lined up outside it could have held thousands. Justin was poked by about 6:50 and we were leaving by 7:15pm - not too bad at all.
We'll see what tomorrow brings but it looks like we'll be brining Nathan home before the weekend. Whether it is tomorrow, Thursday or Friday I cannot say yet but hopefully before the weekend. Thank you all for your continued prayers.
The doctors talked to me quite a few times today trying to get Shelley and my decision for Nathan's treatments. First the resident Michael came to talk about 9am and I asked a few more questions for most of which he had no answers. Then he and Dr Mpofu came to talk to me about 11am while Nathan and I were in the playroom and I asked a few more questions and they were supposed to come back with answers. Dr Mpofu was not comfortable with a couple of the the options given to us (clavulin only or being released without any antibiotics). Then the resident came back at 1:30 pm for an answer and I told him that I was still waiting for their answers. And finally, the two doctors from infectious diseases, Drs McConnell and ???, came to find out what we wanted to do. They came armed with slides about Cipro and about how it might not be as bad as we think. She showed me 5 or 6 studies and their results but none of them were that compelling. I asked about any studies done with kids on chemotherapy (some chemo drugs also cause joint and tendon issues) who also get Cipro and she was not aware of any, and then she got excited as that is a study that they could do. Anyway, I talked with them for quite awhile, well over an hour, going over the different scenarios, our comfort levels and what we did not like about each. Finally after talking that long they offered another option, Cefepime. It is still a penicillin based antibiotic and so does not have the effects of the Cipro. It can be administered every 8 hours and only takes 5 minutes to give by syringe vs 40 minutes by IV pump for the pep/taz. It is a "big gun" type of anitbiotic however not quite as big as the pep/taz and it could also be a marrow suppressant like the pep/taz (could be the reason why the counts are not coming up). All in all It seems like a pretty viable option compared to the others. It does mean that Nathan would have to remain accessed for a couple of weeks which would limit his activities but we would be at home. And there no guarantees that he would not get sick while on it but it is much better than nothing.
Shelley and I are going to wait to see what Nathan's counts bring in the morning. They were up slightly today to .05 and the rest of his blood work was also up a little. I find it a little ironic that first the doctors were adamnant that we were not leaving until Nathan's counts were high enough, and now that that is taking awhile, they seem to be pushing that we leave... and ironic that we were pushing to leave earlier and now we are holding back and asking for more answers as they shove us out the door. Crazy!
Nathan had some fun today. The program coordinator brought out another new game called "Don't wake up Daddy" and we played it with a young lady volunteer named TJ. The story of the game is that that you have to try to sneak to the fridge for a snack without waking up the dad and Nathan thought it was quite fun. However after a few games Nathan had to bring the girl (TJ) back to his room to play Wii with him. I was laughing at the lines he used to get her there. He'll be just fine as a teenager!
We also took Justin for his H1N1 shot this evening. He cooperated completely, had no hesitation, was having fun AND THEN THE NURSE STUCK A NEEDLE IN HIM. And he howled! and howled! It took a few minutes and some snacks to get him to calm down. Then on the way back out to the van he was telling us how good he did, that he didn't cry and it only hurt a little bit. I hope he feels that same way if he has to get the booster in 3 weeks. After being scared about the line up all day we got to Prairieland Park at about 6:30pm. We walked through a ton of ropes cordoning off areas and making lines and walked all the way into the area where they were doing the needles. There were maybe one hundred people ahead of us (1/2 to 1/3 of that would have been the kids getting the needles) but if that place was full today and lined up outside it could have held thousands. Justin was poked by about 6:50 and we were leaving by 7:15pm - not too bad at all.
We'll see what tomorrow brings but it looks like we'll be brining Nathan home before the weekend. Whether it is tomorrow, Thursday or Friday I cannot say yet but hopefully before the weekend. Thank you all for your continued prayers.
Monday, November 2, 2009
ADI II Day 50
Nathan is doing well - platelets have come up, hemoglobin has come up and even the white blood cells have come up but those darn neutraphils dropped again to 0.04 today.
The Infectious Disease doctor came to speak with me today around 4pm to discuss Nathan's situation and to discuss options. The conversation was started with they were wanting to see us go home, however in order to go home and to be covered for all the groups of possible bacteria that could be created in Nathan's body she was recommending a combination of Clavulin and Cipro. But (there is always a but) clinal studies have determined possible side effects of Cartilage/tendon damage occurring. I asked if this was a permanent side effect or temporary and they don't know as the testing was done on animals that were then killed in order to determine the side effects of the drugs. At first this was the only recommendation but I strongly do not feel comfortable giving our son yet one more drug that has damaging side effects when there are other options.
So the other options are: (1) stay on the pip/taz in hospital till Nathan's neutraphils are 0.5 or showing a strong upward trend; (2) go home with the pip/taz and Arron and I would have to administer through IV (did that back in January and we both concur that with 5 hours sleep between each dosage and the worry of putting an air bubble into Nathan's line was way toooo stressful) or (3) oral antibiotics - (a) the clavulin/cipro combination; (b) other antibiotics that wouldn't cover the full realm of possible bacteria.
Since this came to us late in the day and the decision is ours, another night stay in the hospital is the result. Our opinion is for Nathan to remain on the pip/taz and see where his counts go Wed and Thursday. If the neutraphils are on an upward trend then we would be very comfortable going home on an antibiotic that doesn't cover everything that the pip/taz does. Nor would there be the side effect as mentioned with the clavulin and cipro.
One question I asked was "Could the piperacillin/tazobactum that Nathan is receiving cause suppression of the neutraphils?"The doctors answer was no. However Nathan is being taken off of his weekend antibiotic Septra as it can suppress or cause further neutrapenia so it made me wonder again about the pip/taz. So I looked up the drug in the nurses medicine book by Nathan's room and low and behold, possible side effect is reduced neutraphils.
The purpose of the antibiotics was because the fever provided indication of possible bacteria in Nathan's system since he had no neutraphils to fight or clean it up. But this isn't the first time he has be neutrapenic. Pretty much all of July he was neutrapenic and he wasn't on antibiotics as he didn't develop a fever. Since Nathan has now been 8 days without fever, I asked the question of whether we could take him off the antibiotics altogether to see if his counts would start to rise. I was told it was a possibility but not protocal.
So I guess we will try and find a happy medium to ensure Nathan gets the protection he needs. He is starting to enjoy hospital life so a few more days wouldn't hurt his feelings. :)
The Infectious Disease doctor came to speak with me today around 4pm to discuss Nathan's situation and to discuss options. The conversation was started with they were wanting to see us go home, however in order to go home and to be covered for all the groups of possible bacteria that could be created in Nathan's body she was recommending a combination of Clavulin and Cipro. But (there is always a but) clinal studies have determined possible side effects of Cartilage/tendon damage occurring. I asked if this was a permanent side effect or temporary and they don't know as the testing was done on animals that were then killed in order to determine the side effects of the drugs. At first this was the only recommendation but I strongly do not feel comfortable giving our son yet one more drug that has damaging side effects when there are other options.
So the other options are: (1) stay on the pip/taz in hospital till Nathan's neutraphils are 0.5 or showing a strong upward trend; (2) go home with the pip/taz and Arron and I would have to administer through IV (did that back in January and we both concur that with 5 hours sleep between each dosage and the worry of putting an air bubble into Nathan's line was way toooo stressful) or (3) oral antibiotics - (a) the clavulin/cipro combination; (b) other antibiotics that wouldn't cover the full realm of possible bacteria.
Since this came to us late in the day and the decision is ours, another night stay in the hospital is the result. Our opinion is for Nathan to remain on the pip/taz and see where his counts go Wed and Thursday. If the neutraphils are on an upward trend then we would be very comfortable going home on an antibiotic that doesn't cover everything that the pip/taz does. Nor would there be the side effect as mentioned with the clavulin and cipro.
One question I asked was "Could the piperacillin/tazobactum that Nathan is receiving cause suppression of the neutraphils?"The doctors answer was no. However Nathan is being taken off of his weekend antibiotic Septra as it can suppress or cause further neutrapenia so it made me wonder again about the pip/taz. So I looked up the drug in the nurses medicine book by Nathan's room and low and behold, possible side effect is reduced neutraphils.
The purpose of the antibiotics was because the fever provided indication of possible bacteria in Nathan's system since he had no neutraphils to fight or clean it up. But this isn't the first time he has be neutrapenic. Pretty much all of July he was neutrapenic and he wasn't on antibiotics as he didn't develop a fever. Since Nathan has now been 8 days without fever, I asked the question of whether we could take him off the antibiotics altogether to see if his counts would start to rise. I was told it was a possibility but not protocal.
So I guess we will try and find a happy medium to ensure Nathan gets the protection he needs. He is starting to enjoy hospital life so a few more days wouldn't hurt his feelings. :)
Sunday, November 1, 2009
ADI II Day 49
Nathan's neutraphils and WBC have continued to drop so needless to say he is still in the hospital. Thurs neutraphils were 0.12, Friday 0.08 and Saturday 0.05. So basically back to the same spot we were when Nathan entered the hospital. I was concerned when the blood work sheet had typed on it that "Blast cells were not found" (which is a great thing) as I didn't even think that there could be a possibility of the leukemia returning when his WBC were so low. But the machine automatically looks for the blast cells when the neutraphils are much lower than the lymphocytes. Hence why we don't normally see this statement on his blood work sheet.
We spoke with Nathan's doctor yesterday and he thinks Nathan is doing quite well aside from being neutrapenic. I indicated that I had looked at the other 2 phases Nathan had the ARAC and the low WBC and neutraphils, and both times he was neutrapenic. The first time Nathan developed a fever and the second he didn't. Each time it took 20-25 days for his neutraphil levels to reach 1.0 (which is still below normal but above the 0.5 requirement to leave the hospital) after the last dose of the ARAC. I really don't think he will keep Nathan that long in the hospital as Nathan is feeling great and hasn't had a fever since last Sunday.
Friday was a great day for Nathan. He had his third round of leg needles which Arron was at the hospital for and he did great. They continued doing the bear hug. He also had visits from the 2 teachers that work with kids in the hospital as well as a visit from Shaylene the pediatric playroom coordinator. She had picked up a new game for the playroom and thought Nathan would like to be the first to play it. She was right!
In the afternoon Nathan dressed up in his Piplup costume, decorated a trick or treat bag and then we proceed to trick or treat throughout the hospital. It was amazing. Shaylene had organized a route, so with Nathan in a wheelchair so that he wouldn't get tired and with a mask on, he had a lot of fun going through the hospital. The genorosity of the hospital staff resulted in Nathan saying that it had been the best Halloween ever. It wasn't the traditional Halloween but that didn't matter. Nathan had a lot of fun and ended up with way too much candy. It was nice to see that smile even if it was mostly covered by a mask.
I was extremely tired by the end of the week. Arron and I traded off so that I could have a break and see the other boys. Carter had hockey and swimming Saturday morning and then we headed to the hospital for a Halloween picnic with Auntie Lorrie, Auntie Pam, Johnathan and Ella. The kids were all dressed up which Nathan really enjoyed seeing. He had a steady stream of visitors which always makes the day go by faster. So thank you for the treats and the visits.
Carter, Justin, Auntie Lorrie and I went trick or treating in the neighbourhood later in the afternoon. Justin did great. After every house he visited he would say "Lets find one more". He was tired after an hour but of course Carter wanted to keep going. Auntie Pam graciously drove and the kids had all kinds of fun. The best house we went to had a decoration on the porch that looked totally fake. Thank goodness there were older kids in front of ours as the decoration was a man dressed up and he reached out and scared the kids in front. Johnathan and Carter didn't think anything of it but Ella veered all the way to the left as she went up to the door. Good for her for continuing up as I would not have gone! They had a lot of fun which was great to see.
Today was a day of rest and getting caught up. Carter needed my help with homework. Groceries were needed and supper made to take to the hospital. The week will have 3 more sets of leg needles and then we pray we never, ever have to see Nathan have these again.
Thanks for the prayers and for thinking of us. Hospital stays pull you out of the real world and make life difficult so thank you for helping make it easier.
We spoke with Nathan's doctor yesterday and he thinks Nathan is doing quite well aside from being neutrapenic. I indicated that I had looked at the other 2 phases Nathan had the ARAC and the low WBC and neutraphils, and both times he was neutrapenic. The first time Nathan developed a fever and the second he didn't. Each time it took 20-25 days for his neutraphil levels to reach 1.0 (which is still below normal but above the 0.5 requirement to leave the hospital) after the last dose of the ARAC. I really don't think he will keep Nathan that long in the hospital as Nathan is feeling great and hasn't had a fever since last Sunday.
Friday was a great day for Nathan. He had his third round of leg needles which Arron was at the hospital for and he did great. They continued doing the bear hug. He also had visits from the 2 teachers that work with kids in the hospital as well as a visit from Shaylene the pediatric playroom coordinator. She had picked up a new game for the playroom and thought Nathan would like to be the first to play it. She was right!
In the afternoon Nathan dressed up in his Piplup costume, decorated a trick or treat bag and then we proceed to trick or treat throughout the hospital. It was amazing. Shaylene had organized a route, so with Nathan in a wheelchair so that he wouldn't get tired and with a mask on, he had a lot of fun going through the hospital. The genorosity of the hospital staff resulted in Nathan saying that it had been the best Halloween ever. It wasn't the traditional Halloween but that didn't matter. Nathan had a lot of fun and ended up with way too much candy. It was nice to see that smile even if it was mostly covered by a mask.
I was extremely tired by the end of the week. Arron and I traded off so that I could have a break and see the other boys. Carter had hockey and swimming Saturday morning and then we headed to the hospital for a Halloween picnic with Auntie Lorrie, Auntie Pam, Johnathan and Ella. The kids were all dressed up which Nathan really enjoyed seeing. He had a steady stream of visitors which always makes the day go by faster. So thank you for the treats and the visits.
Carter, Justin, Auntie Lorrie and I went trick or treating in the neighbourhood later in the afternoon. Justin did great. After every house he visited he would say "Lets find one more". He was tired after an hour but of course Carter wanted to keep going. Auntie Pam graciously drove and the kids had all kinds of fun. The best house we went to had a decoration on the porch that looked totally fake. Thank goodness there were older kids in front of ours as the decoration was a man dressed up and he reached out and scared the kids in front. Johnathan and Carter didn't think anything of it but Ella veered all the way to the left as she went up to the door. Good for her for continuing up as I would not have gone! They had a lot of fun which was great to see.
Today was a day of rest and getting caught up. Carter needed my help with homework. Groceries were needed and supper made to take to the hospital. The week will have 3 more sets of leg needles and then we pray we never, ever have to see Nathan have these again.
Thanks for the prayers and for thinking of us. Hospital stays pull you out of the real world and make life difficult so thank you for helping make it easier.
Thursday, October 29, 2009
ADI II Day 46
Well that was a disappointing couple day stretch. After Nathan's Neutrophil counts progressed four days in a row they have now dropped the past two days. They went from .22 to .18 yesterday and down to .12 today. Shelley questioned Dr Ali today about a few things and it became more apparent that he does not like us (or at least Shelley) questioning him.
First we asked if the counts were that important now that Nathan has been without a fever for over 72 hours and has been at home before with counts this low and the reply was that Nathan will stay in the hospital until his Neutrophil counts were .5 or higher - end of story. Shelley then asked if the antibiotics would be stopped soon since Nathan hasn't had a fever for awhile and all the tests came back negative but that answer was that he will be getting antibiotics for as long as he is in the hospital but no good reason given why. We are trying to be patient but it does seem that Nathan is better and could be coming home. We are likely in over the weekend now and Nathan will miss his trick or treating, not that he would have done much anyway.
Next up were questions about the H1N1 vaccinations as no one has told us what is really going on. The nurses have tried to give us information but they are not the keepers of that information. When we question Dr Ali we keep getting the answer that we will find out soon enough and that decision will be made shortly. Well guess what, H1N1 is here and that decision should be made now. Others who are not as high risk as Nathan seem to know what is going on more than we do. The other strange thing is that Nathan's family does not qualify for the vaccine with the high risk group. We would think that the best method would be to keep the people around Nathan free of the flu and that would limit his exposure but what do we know. If this sounds a little frustrated it is because we are a little frustrated with the answers.
Also today when Shelley and Nathan were in the playroom Shelley was told that Nathan was under the droplet protocol and that he shouldn't be in there. They explained it like he was the one who might get others sick which I don't get. Nathan is the one who is neutropenic.
The other odd thing the hospital has done is they do not let you pick the breakfast anymore. They have served Nathan french toast seven days in a row! He didn't like it the first day, he tried some the 3rd day, but he has not eaten it yet but it is still what he gets daily.
OK, that is enough complaining - let us get some positives in there. Almost without exception the nurses have been great. They have put up with Nathan's mood and have been really professional. This is by far the best stay we have had there in regards to the treatment that Nathan receives daily from the staff of the hospital. And though we get frustrated with some of the answers we are getting we still believe that everything is happening in Nathan's best interest. We really do appreciate everything Drs Ali and Mpofu are doing for us and Nathan likes them as well.
Please continue to pray for Nathan.
First we asked if the counts were that important now that Nathan has been without a fever for over 72 hours and has been at home before with counts this low and the reply was that Nathan will stay in the hospital until his Neutrophil counts were .5 or higher - end of story. Shelley then asked if the antibiotics would be stopped soon since Nathan hasn't had a fever for awhile and all the tests came back negative but that answer was that he will be getting antibiotics for as long as he is in the hospital but no good reason given why. We are trying to be patient but it does seem that Nathan is better and could be coming home. We are likely in over the weekend now and Nathan will miss his trick or treating, not that he would have done much anyway.
Next up were questions about the H1N1 vaccinations as no one has told us what is really going on. The nurses have tried to give us information but they are not the keepers of that information. When we question Dr Ali we keep getting the answer that we will find out soon enough and that decision will be made shortly. Well guess what, H1N1 is here and that decision should be made now. Others who are not as high risk as Nathan seem to know what is going on more than we do. The other strange thing is that Nathan's family does not qualify for the vaccine with the high risk group. We would think that the best method would be to keep the people around Nathan free of the flu and that would limit his exposure but what do we know. If this sounds a little frustrated it is because we are a little frustrated with the answers.
Also today when Shelley and Nathan were in the playroom Shelley was told that Nathan was under the droplet protocol and that he shouldn't be in there. They explained it like he was the one who might get others sick which I don't get. Nathan is the one who is neutropenic.
The other odd thing the hospital has done is they do not let you pick the breakfast anymore. They have served Nathan french toast seven days in a row! He didn't like it the first day, he tried some the 3rd day, but he has not eaten it yet but it is still what he gets daily.
OK, that is enough complaining - let us get some positives in there. Almost without exception the nurses have been great. They have put up with Nathan's mood and have been really professional. This is by far the best stay we have had there in regards to the treatment that Nathan receives daily from the staff of the hospital. And though we get frustrated with some of the answers we are getting we still believe that everything is happening in Nathan's best interest. We really do appreciate everything Drs Ali and Mpofu are doing for us and Nathan likes them as well.
Please continue to pray for Nathan.
Wednesday, October 28, 2009
ADI II Day 45
Another 24 hours without a fever! Woohoo! Nathan reached the 48 hour fever free mark last night. Now he needs to get up to the .50 mark for his Neutrophils and yesterday morning he had progressed from .16 to .22 so he is going in the right direction though we aren't quite half way there yet as he started at .03. Nathan had a pretty good day yesterday and he was in reasonable spirits for his 5th full day in the hospital. His Grandma Elsie stayed with him for the afternoon to give Shelley a break and he even had her playing the Wii with him. Shelley went back to take him supper and I followed about 7pm. Then Auntie Lorrie brough Nathan ice cream and that went over very well. Though Nathan has a new question of EVERYONE who walks through the door - "Why are you here?" I think he likes hearing that people are coming to see him.
They will have done blood work already this morning but I have not talked to Shelley yet. Nathan's platelets were really low yesterday so depending on what his blood work shows this morning he may need to get platelets transfused. Nathan also has the leg needles scheduled for 10 am for which I will go to the hospital. Nathan is getting closer to being out of the hospital. I'm not sure if they will make him wait until he gets to .5 or if we are trending the right way they will release him. He has had blood counts that low at home before. We are not pushing to go home however as we remember last time when we were released from the hospital at 2pm and we were back in by 7pm that same day for another weeklong stay.
We thank everyone who has been praying for Nathan and his family, we sincerely appreciate it.
They will have done blood work already this morning but I have not talked to Shelley yet. Nathan's platelets were really low yesterday so depending on what his blood work shows this morning he may need to get platelets transfused. Nathan also has the leg needles scheduled for 10 am for which I will go to the hospital. Nathan is getting closer to being out of the hospital. I'm not sure if they will make him wait until he gets to .5 or if we are trending the right way they will release him. He has had blood counts that low at home before. We are not pushing to go home however as we remember last time when we were released from the hospital at 2pm and we were back in by 7pm that same day for another weeklong stay.
We thank everyone who has been praying for Nathan and his family, we sincerely appreciate it.
Tuesday, October 27, 2009
ADI II Day 44
Nathan is up to 24 hours fever free! Nathan did not have a fever overnight on Sunday night and hadn't had one all day Monday. If he can remain fever free until Tuesday night then he will have reached the desired 48 hour mark before release. However, the second part of the equation is that his Neutrophils have to also be at .5 and though the are climbing, now at .13, they still have a way to go yet.
I went to the hospital yesterday to help Nathan and Shelley with Nathan's leg needles and it was great that when I got there they were both in a good mood. Nathan had dome some schoolwork with the hospital teacher Beverley and Shelley got to go for a walk to Starbucks and so the spirits were pretty good.
The Erwinia L-asparaginase had to come up from pharmacy and so it wasn't ready at ten. This surprised me as we were in the hospital, it's not like they had to wait for us to show up! But by quarter after the chemo was there and the nurse got it ready. Nathan wasn't sure about getting it done in the hospital but I sat on a chair and he did a bear hug to me and did very well. He had no crying or yelling with the first needle but as usual they second needle was just too much and caused some crying. He still handled it very well but for some reason he thinks he doesn't. He was upset saying he wasn't good at it but I think he did just wonderful! It's not easy to do and he got them done without reservation and delay - to me that is wonderful. The tears and crying come from the pain and that is all good to let out.
They had a pretty decent Monday for not being to leave his room yet and not many visitors to distract him. I took them supper down about 6pm and brought Carter and Justin with me. Nathan ate a little of that and then he and Carter were playing the Wii! Grandma and Grandpa Miller came for a visit as well and that turned into a many handed Uno game.
Carter was upset when he found out Shelley was staying overnight yet. He put the screws on a little bit intimating that his mother loved Nathan more and of course that then upsets the family balance a little bit. Justin was oblivious to everything and played with a toy that Nathan got, and Astro boy that shoots a rocket. He also loves going for walks down to the nutrition center to get an orange juice. That has become Justin's ritual/job there, he gets drinks for everyone.
There is nothing on the schedule for chemo treatments today but back to leg needles tomorrow. Hopefully those Neutrophils are growing and we are that much closer to bringing our Nathan home and getting our family back under one roof.
I went to the hospital yesterday to help Nathan and Shelley with Nathan's leg needles and it was great that when I got there they were both in a good mood. Nathan had dome some schoolwork with the hospital teacher Beverley and Shelley got to go for a walk to Starbucks and so the spirits were pretty good.
The Erwinia L-asparaginase had to come up from pharmacy and so it wasn't ready at ten. This surprised me as we were in the hospital, it's not like they had to wait for us to show up! But by quarter after the chemo was there and the nurse got it ready. Nathan wasn't sure about getting it done in the hospital but I sat on a chair and he did a bear hug to me and did very well. He had no crying or yelling with the first needle but as usual they second needle was just too much and caused some crying. He still handled it very well but for some reason he thinks he doesn't. He was upset saying he wasn't good at it but I think he did just wonderful! It's not easy to do and he got them done without reservation and delay - to me that is wonderful. The tears and crying come from the pain and that is all good to let out.
They had a pretty decent Monday for not being to leave his room yet and not many visitors to distract him. I took them supper down about 6pm and brought Carter and Justin with me. Nathan ate a little of that and then he and Carter were playing the Wii! Grandma and Grandpa Miller came for a visit as well and that turned into a many handed Uno game.
Carter was upset when he found out Shelley was staying overnight yet. He put the screws on a little bit intimating that his mother loved Nathan more and of course that then upsets the family balance a little bit. Justin was oblivious to everything and played with a toy that Nathan got, and Astro boy that shoots a rocket. He also loves going for walks down to the nutrition center to get an orange juice. That has become Justin's ritual/job there, he gets drinks for everyone.
There is nothing on the schedule for chemo treatments today but back to leg needles tomorrow. Hopefully those Neutrophils are growing and we are that much closer to bringing our Nathan home and getting our family back under one roof.
Monday, October 26, 2009
ADI II Day 43
I had the pleasure of staying in the hospital with Nathan on Saturday night. We had a pretty good evening playing UNO with Shelley before she left and then we snuggled in (he finally let me on his bed) to watch a movie. After the movie we flipped to the hockey game and Nathan fell asleep which was real nice except that I had to wake him 3 times in the first hour to take more medication. We had been concerned with Nathan not going to the washroom enough but he made up for it during the night. He had me up 4 or 5 times to go to the washroom and then we had an early start to our day just before 7am.
Nathan's body refused to give him a break from the fevers he has been experiencing. He had a fever first thing Sunday morning and the Tylenol wasn't working at getting his temp back down and then he started to throw up again. Since he hasn't been eating much most of what came up was bile and Nathan didn't really like the taste of that! A resident came in to check him out but there is not much they can do. He looks good otherwise and there are no other symptoms of things they are concerned with. All of his tests have come back negative expect the H1N1 test which hasn't been back yet. They don't know what is causing the fever but they are still just treating it with the PepTaz general antibiotic. His fever finally came down after another hour, just in time for breakfast.
The food at the hospital has been pretty unappealing. There hasn't been anything there that Nathan has liked and I have tasted most of it and I understand why. So when Shelley was coming back on Sunday morning Nathan ordered his Mom's scrambled eggs. Shelley brought some in and Nathan finally ate more than one bit of something.
The rest of our Sunday was just like the other days, feel good for awhile. Start to feel poorly, get a fever, get Tylenol, feel good for awhile again. Alarms go off because his pulse is too high (150) and then they would go off later because his pulse was too low. Nathan has retained his ability to tease any visitors/nurses/doctors and the majority of the time it is done good naturedly and that is good to see. He still isn't allowed to leave his room and they have decided to continue with this phase so Nathan will get his chemotherapy treatment in his room today. Shelley and I were kind of looking forward to go to a different environment (Cancer Center) for a break for him but I guess it is more important to not have him moving through the hospital.
Shelley stayed last night with Nathan, I hope she had a good sleep but it is not likely in the hospital. She will call me today when it is time to have the leg needles. Since Nathan had a fever Sunday night we are now in the hospital until Wed morning for sure.
Nathan's body refused to give him a break from the fevers he has been experiencing. He had a fever first thing Sunday morning and the Tylenol wasn't working at getting his temp back down and then he started to throw up again. Since he hasn't been eating much most of what came up was bile and Nathan didn't really like the taste of that! A resident came in to check him out but there is not much they can do. He looks good otherwise and there are no other symptoms of things they are concerned with. All of his tests have come back negative expect the H1N1 test which hasn't been back yet. They don't know what is causing the fever but they are still just treating it with the PepTaz general antibiotic. His fever finally came down after another hour, just in time for breakfast.
The food at the hospital has been pretty unappealing. There hasn't been anything there that Nathan has liked and I have tasted most of it and I understand why. So when Shelley was coming back on Sunday morning Nathan ordered his Mom's scrambled eggs. Shelley brought some in and Nathan finally ate more than one bit of something.
The rest of our Sunday was just like the other days, feel good for awhile. Start to feel poorly, get a fever, get Tylenol, feel good for awhile again. Alarms go off because his pulse is too high (150) and then they would go off later because his pulse was too low. Nathan has retained his ability to tease any visitors/nurses/doctors and the majority of the time it is done good naturedly and that is good to see. He still isn't allowed to leave his room and they have decided to continue with this phase so Nathan will get his chemotherapy treatment in his room today. Shelley and I were kind of looking forward to go to a different environment (Cancer Center) for a break for him but I guess it is more important to not have him moving through the hospital.
Shelley stayed last night with Nathan, I hope she had a good sleep but it is not likely in the hospital. She will call me today when it is time to have the leg needles. Since Nathan had a fever Sunday night we are now in the hospital until Wed morning for sure.
Saturday, October 24, 2009
ADI II Day 42
Nathan slept well last night from 10 till 2pm but then his pulse started to climb. Since it was outside the set range, his machine beeped and beeped. About an hour later, his fever was back.I don't think I fell asleep after this until around 4:30am and Nathan was up for the day by 7:25am so its been a long day and its only 5pm.
Blood work came back this morning with no further decline in neutraphils (not much room for them to decline further but nice to see stabilization) but his hemoglobin dropped from 78 to 67. Dr Mpofu arranged for a red cell transfusion this afternoon. Hopefully this will perk his system up a bit. The fever was back around noon. Nathans hospital stay will be until his neutraphils show a steady increase,minimum 0.5 and 48 hours of no fever.
Arron was with Carter and Justin this morning and then we traded off so that I could come home to nap, pick up some fruit and make Nathan some chili. His appetite is really low right now but he loves chili so hopefully he will eat some. Auntie Pam had Carter and Justin so I was also able to get in a quick nap and shower. Nice to feel awake! So thank you Auntie Pam! Anyway on my way back to the hospital. Will keep you posted.
Blood work came back this morning with no further decline in neutraphils (not much room for them to decline further but nice to see stabilization) but his hemoglobin dropped from 78 to 67. Dr Mpofu arranged for a red cell transfusion this afternoon. Hopefully this will perk his system up a bit. The fever was back around noon. Nathans hospital stay will be until his neutraphils show a steady increase,minimum 0.5 and 48 hours of no fever.
Arron was with Carter and Justin this morning and then we traded off so that I could come home to nap, pick up some fruit and make Nathan some chili. His appetite is really low right now but he loves chili so hopefully he will eat some. Auntie Pam had Carter and Justin so I was also able to get in a quick nap and shower. Nice to feel awake! So thank you Auntie Pam! Anyway on my way back to the hospital. Will keep you posted.
Friday, October 23, 2009
ADI Day 41
[UPDATED: Fri 7pm] After going so long without a hospital stay we almost expected it to stay that way but guess what - ETU!
Nathan had a fever yesterday at the clinic but it was only about 38.7. Since they are familiar with Nathan and know that the ARAC that he is on makes his temperature bounce up and down they weren't that worried and sent us home since we had to be back at the Cancer Center on Friday anyway. Well Nathan wasn't feeling that good and he finally fell asleep on the couch for a nap at 6pm and when he woke up at 7pm he was running a high fever of 39.7C (almost 104F). We gave him Tylenol but an hour later he was still at 39.7 so we phoned Dr Mpofu and he asked us to come down to emergency for blood work. We were, and still are, concerned about taking a child with no immunity into emergency but it wasn't too bad last night. When we arrived at 9pm there weren't many people and we got sent over to pediatric emergency fairly quickly and got a privateish room there.
That, of course, is where the good vibes ended. They had to do blood work on Nathan but seemed to not really know how to go about it. First they sent in a guy to take it from Nathan's arm but we explained that he had a port and they were to do it that way. Then the nurse came with a port access needle that was for an adult, way too large for Nathan. So they phoned the ped ward and had a childs one sent down (but why wouldn't pediatric emergency have a child's one - it is PEDIATRIC). Then the emerg nurse tried to access Nathan and even though she did it relatively quickly and painlessly for Nathan, it didn't work. Then comes the attempts to re-adjust and THOSE hurt. Finally they called a nurse from the ped ward to come down to access his port. Nurse Iris came down and she was very deliberate. She felt around for quite awhile trying to get a handle on Nathan's port and that comes with discomfort and apprehension for Nathan. She finally was ready to do the access and Nathan counted .. but she didn't poke. So they had Nathan count again but she did not wait for his count and poked at 3 instead of 5 and that makes him angry/surprised/hurt. Thankfully she got it in correctly the first try. They were still having trouble drawing the blood until we had to mention that they usually push some fluid in before they can withdraw and that did the trick. So 2+ hours later they finally had some blood to send down. They said 10 mins to get the results but of course it was closer to an hour. When they finally came back, Nathan's Neutrophil counts were extremely low at 0.06. They then ordered a bed for him in peds and our night was about to become longer.
It took a little bit to get a bed ready for Nathan and we got upstairs to the ped ward around 12:30am. We had to then tell the whole story to a doctor (intern) there and that took over a half hour. After he left, the nurse came in and we had to tell her most of the same information (for the fourth time that night - admitting, emerg doctor, ward intern, ward nurse). By then it was 2:30 am and both Shelley and I were pretty tired. Thankfully Nathan fell asleep shortly before midnight in the emergency room but that did mean I had to carry a pretty big boy through the hospital (or wait an hour for an orderly).
Shelley stayed overnight and Nathan's fever had broke at about 2am but was back by 5am - darn! I got back to the hospital by 9:30am and both Shelley and Nathan were still sleeping. Today was a long day of not knowing anything. Right from last night at midnight they kept telling us that Dr Mpofu would be in to see us but he did not show up until almost 2pm. The story for the stay is that Nathan will have to fever free for 24 hours and his Neutrophils have to be at least .5 (they are .03 right now) before we will be released so we really have no idea when it might be other than at least 24 hours from now.
Nathan had a not very pleasant late afternoon. He napped for a couple of hours but woke up coughing and ended up vomiting. His fever had also returned at 39.2. They brought him Ondensetron at 5pm and Tylenol at 5:15 but he threw that all up about 5:16. It wasn't very long but it was too long for them to give him another dose of Ondensetron - but they did try different Tylenol that we took a little more slowly. Nathan kept that down and it seemed to do the trick as he is feeling a little better now. He is still not eating or drinking very much but at least now he is trying a lot of different things. One bite of fries, one bite fish, one bite of crackers, one bite of carrot, one bite of crispers - just nothing is really seeming tasty to him.
Nathan had a steady stream of people through his room today. Doctors, nurses, Cancer center nurses, volunteers, playroom coordinator, both hospital school teachers and on and on. I am surprised he was able to sleep through some of it this afternoon.
Hospital staff were not the only visitors. Nathan's cousin Michelle came to visit late this morning and stayed for a couple of hours which Nathan enjoyed. Then Shelley went and got Carter and Justin and brought them back after Carter's music. Nathan and Carter were both pretty excited that Nathan got to bring the Wii into his room since he can't go out to the playroom.
And on that note, people piss me off! All of the DVD players that had been in the rooms were stolen. The original Wii system had its controllers stolen. Two of the three new Wii systems don't work from abuse. Why do idiots out there have to do that? Nathan's favourite hospital game, Spongebob Spoons has 1/3 of the cards missing and the Uno deck is half gone. I just don't understand why people treat things for sick kids like this.
To finish up this long post, we are in the hospital for a few days at least. Right now we do not have any time line of when he might be released, and so it becomes a day by day thing again. All this with only three weeks left in his last major phase. The other decision that was made today was that Nathan will continue to get treatments while in the hospital. They had originally told us that they would probably halt his chemo but decided in the end to go ahead.
Shelley will be staying tonight again and I will take the other two boys home. Carter has hockey practice first thing in the morning which Justin will come to and then we will head back to the hospital. Thank you to everyone for your support and offers of assistance - we truly do appreciate it.
Nathan had a fever yesterday at the clinic but it was only about 38.7. Since they are familiar with Nathan and know that the ARAC that he is on makes his temperature bounce up and down they weren't that worried and sent us home since we had to be back at the Cancer Center on Friday anyway. Well Nathan wasn't feeling that good and he finally fell asleep on the couch for a nap at 6pm and when he woke up at 7pm he was running a high fever of 39.7C (almost 104F). We gave him Tylenol but an hour later he was still at 39.7 so we phoned Dr Mpofu and he asked us to come down to emergency for blood work. We were, and still are, concerned about taking a child with no immunity into emergency but it wasn't too bad last night. When we arrived at 9pm there weren't many people and we got sent over to pediatric emergency fairly quickly and got a privateish room there.
That, of course, is where the good vibes ended. They had to do blood work on Nathan but seemed to not really know how to go about it. First they sent in a guy to take it from Nathan's arm but we explained that he had a port and they were to do it that way. Then the nurse came with a port access needle that was for an adult, way too large for Nathan. So they phoned the ped ward and had a childs one sent down (but why wouldn't pediatric emergency have a child's one - it is PEDIATRIC). Then the emerg nurse tried to access Nathan and even though she did it relatively quickly and painlessly for Nathan, it didn't work. Then comes the attempts to re-adjust and THOSE hurt. Finally they called a nurse from the ped ward to come down to access his port. Nurse Iris came down and she was very deliberate. She felt around for quite awhile trying to get a handle on Nathan's port and that comes with discomfort and apprehension for Nathan. She finally was ready to do the access and Nathan counted .. but she didn't poke. So they had Nathan count again but she did not wait for his count and poked at 3 instead of 5 and that makes him angry/surprised/hurt. Thankfully she got it in correctly the first try. They were still having trouble drawing the blood until we had to mention that they usually push some fluid in before they can withdraw and that did the trick. So 2+ hours later they finally had some blood to send down. They said 10 mins to get the results but of course it was closer to an hour. When they finally came back, Nathan's Neutrophil counts were extremely low at 0.06. They then ordered a bed for him in peds and our night was about to become longer.
It took a little bit to get a bed ready for Nathan and we got upstairs to the ped ward around 12:30am. We had to then tell the whole story to a doctor (intern) there and that took over a half hour. After he left, the nurse came in and we had to tell her most of the same information (for the fourth time that night - admitting, emerg doctor, ward intern, ward nurse). By then it was 2:30 am and both Shelley and I were pretty tired. Thankfully Nathan fell asleep shortly before midnight in the emergency room but that did mean I had to carry a pretty big boy through the hospital (or wait an hour for an orderly).
Shelley stayed overnight and Nathan's fever had broke at about 2am but was back by 5am - darn! I got back to the hospital by 9:30am and both Shelley and Nathan were still sleeping. Today was a long day of not knowing anything. Right from last night at midnight they kept telling us that Dr Mpofu would be in to see us but he did not show up until almost 2pm. The story for the stay is that Nathan will have to fever free for 24 hours and his Neutrophils have to be at least .5 (they are .03 right now) before we will be released so we really have no idea when it might be other than at least 24 hours from now.
Nathan had a not very pleasant late afternoon. He napped for a couple of hours but woke up coughing and ended up vomiting. His fever had also returned at 39.2. They brought him Ondensetron at 5pm and Tylenol at 5:15 but he threw that all up about 5:16. It wasn't very long but it was too long for them to give him another dose of Ondensetron - but they did try different Tylenol that we took a little more slowly. Nathan kept that down and it seemed to do the trick as he is feeling a little better now. He is still not eating or drinking very much but at least now he is trying a lot of different things. One bite of fries, one bite fish, one bite of crackers, one bite of carrot, one bite of crispers - just nothing is really seeming tasty to him.
Nathan had a steady stream of people through his room today. Doctors, nurses, Cancer center nurses, volunteers, playroom coordinator, both hospital school teachers and on and on. I am surprised he was able to sleep through some of it this afternoon.
Hospital staff were not the only visitors. Nathan's cousin Michelle came to visit late this morning and stayed for a couple of hours which Nathan enjoyed. Then Shelley went and got Carter and Justin and brought them back after Carter's music. Nathan and Carter were both pretty excited that Nathan got to bring the Wii into his room since he can't go out to the playroom.
And on that note, people piss me off! All of the DVD players that had been in the rooms were stolen. The original Wii system had its controllers stolen. Two of the three new Wii systems don't work from abuse. Why do idiots out there have to do that? Nathan's favourite hospital game, Spongebob Spoons has 1/3 of the cards missing and the Uno deck is half gone. I just don't understand why people treat things for sick kids like this.
To finish up this long post, we are in the hospital for a few days at least. Right now we do not have any time line of when he might be released, and so it becomes a day by day thing again. All this with only three weeks left in his last major phase. The other decision that was made today was that Nathan will continue to get treatments while in the hospital. They had originally told us that they would probably halt his chemo but decided in the end to go ahead.
Shelley will be staying tonight again and I will take the other two boys home. Carter has hockey practice first thing in the morning which Justin will come to and then we will head back to the hospital. Thank you to everyone for your support and offers of assistance - we truly do appreciate it.
ADI something or other
Damn Febrile Neutropenia... Nathan was admitted into RUH tonight (room 3003). Hopefully it is more precautionary than anything else but he will be getting antibiotics for a few days minimum.
Tuesday, October 20, 2009
ADI II Day 37
Nathan had treatment again today - intrathecal methotrexate and ARAC. The ARAC caused his body temperature to be unregulated over the weekend and at one point gave us a scare. He reached 38.7 which meant we had to call his doctor. Since Nathan had just been seen he recommended providing tylenol and seeing if in the morning if his temperature had dropped. Thankfully it did,but we watched it very closely all weekend.
Saturday morning we participated in the Children's Wish Foundation 5th Annual Walk for Wishes. The event raised approximately $44,000 in the Saskatoon walk alone which is truly amazing. The weather was beautiful and the company was great as Arron's sisters Wendy and Julianne were the ones who initiated us joining. We were also joined by nieces Michelle, Tesa and Grandma Darlene and my sister Lorrie.
Nathan was feeling much better Sunday so we decided to take the boys for a family skate. The boys did well including Justin who had his first experience on skates. At first he was apprehensive but by the end he was doing his usual "wha hoo"s. Monday, Nathan was able to enjoy a day at school. He was greated by the familar "Nathan is here". He handled himself well when one of the kids said "Nathan your hair has all fallen out again". Nathan's hair has thinned with the harder chemo drugs but should grow back when he is in Maintenance. He was also able to attend hockey practise. He was a tired boy last night which lead into today. Needless to say its been a long day and all but Justin are asleep (too long of a nap today I am thinking).
The remainder of the week will be short visits to the clinic as Nathan just receives the ARAC. 2 more weeks to go.
Saturday morning we participated in the Children's Wish Foundation 5th Annual Walk for Wishes. The event raised approximately $44,000 in the Saskatoon walk alone which is truly amazing. The weather was beautiful and the company was great as Arron's sisters Wendy and Julianne were the ones who initiated us joining. We were also joined by nieces Michelle, Tesa and Grandma Darlene and my sister Lorrie.
Nathan was feeling much better Sunday so we decided to take the boys for a family skate. The boys did well including Justin who had his first experience on skates. At first he was apprehensive but by the end he was doing his usual "wha hoo"s. Monday, Nathan was able to enjoy a day at school. He was greated by the familar "Nathan is here". He handled himself well when one of the kids said "Nathan your hair has all fallen out again". Nathan's hair has thinned with the harder chemo drugs but should grow back when he is in Maintenance. He was also able to attend hockey practise. He was a tired boy last night which lead into today. Needless to say its been a long day and all but Justin are asleep (too long of a nap today I am thinking).
The remainder of the week will be short visits to the clinic as Nathan just receives the ARAC. 2 more weeks to go.
Friday, October 16, 2009
ADI II Day 33
The weeks are getting busier as it seems we haven't had much time to get the blog updated.
Nathan is doing well. He had a week of break from treatment the week of the 5th and was able to attend school on Oct 7 and 8th which was a welcome change for him. When he isn't feeling up to going we accumulate work from his teacher and do it at home. His white blood cell counts were pretty high as a result of the steroids but came down this past Tuesday. Tuesday his counts were at the levels required so started treatment again. He developed a cold/cough about 3 weeks ago but was really mild. Unfortunately it seems to have settled in his chest. The anesthesiologists were concerned Tuesday and told me to watch it and "make an appointment with someone for follow up". Since Nathan's doctor didn't mention anything or comment on their suggestion I asked who should I be taking him to see and it seemed to be a strange suggestion since I was at the hospital and Nathan just saw 3 doctors. I was thinking maybe a specialist but they suggested he see our family doctor. I was really surprised and simply suggested his oncologist would have to look at him again as his family Doctor wouldn't know what drugs he could or could not have.
Well the cough has really developed so today Nathan was examined again, more blood drawn and chest x-rays were taken. I am grateful they take his health seriously. The blood work came back with his neutrophils going from 0.98 on Tuesday to 4.26 today. After 4 days of chemotherapy I wasn't expecting high neutrophils. The nurse indicated it could be a sign that his body is responding, in a good way, to trying to fight something off i.e. the cold. All other blood work was good. And to think all week when he asked if he could go to school I said no because he counts would be falling. After 11 months I still don't have the right answer! :) I really wish someone would invent a tool to prick the finger and tell you what your white cells were at and neutrophil levels.
Nathan celebrated his 6th birthday on Monday with us, his Uncle Darrell, Auntie Pam, Johnathan, Ella, Auntie Lorrie and Grandpa and Grandma McLeod. He couldn't wait to open his presents and was really excited to receive a drum set from his grandparents. All the boys love it. He told me later that day that he wasn't really six because he hadn't celebrated with a kids party yet. I guess I better get on that otherwise he will be 5 forever.
Nathan will have the weekend to recoup and if feeling well will be able to go to school Monday. We have 3 weeks of treatment left until we are done this phase and are looking forward to Maintenance. We are grateful for the support we have had and all the prayers. Looking back it made us stronger so thank you.
Nathan is doing well. He had a week of break from treatment the week of the 5th and was able to attend school on Oct 7 and 8th which was a welcome change for him. When he isn't feeling up to going we accumulate work from his teacher and do it at home. His white blood cell counts were pretty high as a result of the steroids but came down this past Tuesday. Tuesday his counts were at the levels required so started treatment again. He developed a cold/cough about 3 weeks ago but was really mild. Unfortunately it seems to have settled in his chest. The anesthesiologists were concerned Tuesday and told me to watch it and "make an appointment with someone for follow up". Since Nathan's doctor didn't mention anything or comment on their suggestion I asked who should I be taking him to see and it seemed to be a strange suggestion since I was at the hospital and Nathan just saw 3 doctors. I was thinking maybe a specialist but they suggested he see our family doctor. I was really surprised and simply suggested his oncologist would have to look at him again as his family Doctor wouldn't know what drugs he could or could not have.
Well the cough has really developed so today Nathan was examined again, more blood drawn and chest x-rays were taken. I am grateful they take his health seriously. The blood work came back with his neutrophils going from 0.98 on Tuesday to 4.26 today. After 4 days of chemotherapy I wasn't expecting high neutrophils. The nurse indicated it could be a sign that his body is responding, in a good way, to trying to fight something off i.e. the cold. All other blood work was good. And to think all week when he asked if he could go to school I said no because he counts would be falling. After 11 months I still don't have the right answer! :) I really wish someone would invent a tool to prick the finger and tell you what your white cells were at and neutrophil levels.
Nathan celebrated his 6th birthday on Monday with us, his Uncle Darrell, Auntie Pam, Johnathan, Ella, Auntie Lorrie and Grandpa and Grandma McLeod. He couldn't wait to open his presents and was really excited to receive a drum set from his grandparents. All the boys love it. He told me later that day that he wasn't really six because he hadn't celebrated with a kids party yet. I guess I better get on that otherwise he will be 5 forever.
Nathan will have the weekend to recoup and if feeling well will be able to go to school Monday. We have 3 weeks of treatment left until we are done this phase and are looking forward to Maintenance. We are grateful for the support we have had and all the prayers. Looking back it made us stronger so thank you.
Friday, October 2, 2009
ADI II Day 19
2 eggos, 2 bowls of Sugar Crisp cereal, 1 and 1/2 boiled eggs with 2 bites of beans (they tasted funny this morning) and 2 grilled cheese sandwiches, together with about 4 glasses of milk and a cup of hot chocolate - all from 6:45am to 10:20am. That is what a 5 year old on steroids eats for breakfast! This is another week of the dexamethasone and hopefully the last.
Last week was another round of chemo with leg needles M,W,F and Nathan did awesome. The clinic helped him out a lot by having the Asparaginase drug ready when we arrived as there was less time for Nathan to become apprehensive about having it done. That combined with Arron being there to do the bear hug with him really helped. It was a great suggestion that has worked out very well. Nathan will have 1 more set of the leg needles at the end of October/start of November and then we pray we say good bye to these forever! In fact, Nathan did well enough that he was able to go and get a new Wii game - Wii Sports Resort. It was kind of funny as Nathan tried to bargain the game before the end of the week but Arron and I had to be strong and wait until Friday. Carter was so excited that he wanted to go to the clinic with Nathan on Friday just so he could go with Nathan afterward to get the game! Carter had no school that day so he went with us and had to sit through a long day of plasma. All the boys really like this new game and it has become an evening time favourite.
The weeks since our last blog have been gone by quickly although some days seem really long. The beautiful weather last week (+30's) helped us to get a few more things done in the yard. Arron finished the stairs to the deck and is working on the railing to the stairs. I finished planting the trees we have accumulated and perennials that will be for the back yard. Nathan was my partner. First monitoring my progress with his snack and then he had a great idea that he should make mud pies! I have pictures which I will get Arron to upload to the site. It was great watching him have fun and to just be a child.
Last Thursday, the 24th, Nathan was feeling really good so he went to school. We discussed him going only for the morning but when picked up for lunch he indicated he was having too much fun and wanted to go back for the afternoon. Aside from that he hasn't been able to attend school.
This week has been much longer for him. Monday was a longer visit to the clinic and was followed by an afternoon nap. Tues, Wed and Thursday I was at work so my mom was home with Nathan and Justin and Carter when he was home from school. I am thinking the prior two weeks of treatment have caught up with Nathan as he was much more pale, tired and complained of not feeling well. He napped every day. This morning he complained of a headache which makes me wonder what his hemoglobin is at. Aside from that, he has handled treatment well. He has been able to sleep through the night although he has developed a cough. 'Tis the season for the flu and everyone is talking about it and trying to prepare for H1N1. Some type of bug has entered our house. Justin was sick a few weeks ago with a fever and upset stomach; Nathan a cough, no other cold or flu symptoms, Carter an upset stomach so is home today and I am getting the cold. I had a headache at the base of my neck for 2 days and this morning my throat feels raw. I've increased my fluid intake substantially and vitamins. It always seems the change in weather brings some type of bug. We have it very mild so hope it stays that way.
We are anxious to get to the end of this phase but nervous as to what the new Maintenance phase will be. Mixed reviews have been received from other parents - some kids adjust great the others get quite sick as a result of their bodies breaking down the pills. We are hoping to regain some normalcy. The treatment process is manageable but it is the weeks like this one where Nathan is at his lowest that make it difficult to watch. We hope Maintenance has better weeks for him.
Next week is a break with only blood work on Monday so hopefully he will be feeling well enough for school. Nathan's 6th birthday is on the Thanksgiving weekend. It's an appropriate day to fall on as we have much to be thankful for.
Last week was another round of chemo with leg needles M,W,F and Nathan did awesome. The clinic helped him out a lot by having the Asparaginase drug ready when we arrived as there was less time for Nathan to become apprehensive about having it done. That combined with Arron being there to do the bear hug with him really helped. It was a great suggestion that has worked out very well. Nathan will have 1 more set of the leg needles at the end of October/start of November and then we pray we say good bye to these forever! In fact, Nathan did well enough that he was able to go and get a new Wii game - Wii Sports Resort. It was kind of funny as Nathan tried to bargain the game before the end of the week but Arron and I had to be strong and wait until Friday. Carter was so excited that he wanted to go to the clinic with Nathan on Friday just so he could go with Nathan afterward to get the game! Carter had no school that day so he went with us and had to sit through a long day of plasma. All the boys really like this new game and it has become an evening time favourite.
The weeks since our last blog have been gone by quickly although some days seem really long. The beautiful weather last week (+30's) helped us to get a few more things done in the yard. Arron finished the stairs to the deck and is working on the railing to the stairs. I finished planting the trees we have accumulated and perennials that will be for the back yard. Nathan was my partner. First monitoring my progress with his snack and then he had a great idea that he should make mud pies! I have pictures which I will get Arron to upload to the site. It was great watching him have fun and to just be a child.
Last Thursday, the 24th, Nathan was feeling really good so he went to school. We discussed him going only for the morning but when picked up for lunch he indicated he was having too much fun and wanted to go back for the afternoon. Aside from that he hasn't been able to attend school.
This week has been much longer for him. Monday was a longer visit to the clinic and was followed by an afternoon nap. Tues, Wed and Thursday I was at work so my mom was home with Nathan and Justin and Carter when he was home from school. I am thinking the prior two weeks of treatment have caught up with Nathan as he was much more pale, tired and complained of not feeling well. He napped every day. This morning he complained of a headache which makes me wonder what his hemoglobin is at. Aside from that, he has handled treatment well. He has been able to sleep through the night although he has developed a cough. 'Tis the season for the flu and everyone is talking about it and trying to prepare for H1N1. Some type of bug has entered our house. Justin was sick a few weeks ago with a fever and upset stomach; Nathan a cough, no other cold or flu symptoms, Carter an upset stomach so is home today and I am getting the cold. I had a headache at the base of my neck for 2 days and this morning my throat feels raw. I've increased my fluid intake substantially and vitamins. It always seems the change in weather brings some type of bug. We have it very mild so hope it stays that way.
We are anxious to get to the end of this phase but nervous as to what the new Maintenance phase will be. Mixed reviews have been received from other parents - some kids adjust great the others get quite sick as a result of their bodies breaking down the pills. We are hoping to regain some normalcy. The treatment process is manageable but it is the weeks like this one where Nathan is at his lowest that make it difficult to watch. We hope Maintenance has better weeks for him.
Next week is a break with only blood work on Monday so hopefully he will be feeling well enough for school. Nathan's 6th birthday is on the Thanksgiving weekend. It's an appropriate day to fall on as we have much to be thankful for.
Friday, September 18, 2009
ADI II Day 5
Nathan did really well this morning. We arrived shortly after 8am at the clinic and the leg needle medication was ready. Arron and Nathan went in to get accessed as Nathan was receiving fresh frozen plasma (FFP) today, and the needles. When they came out I asked "Did Nathan have the leg needles?" as I didn't hear a peep from the room. Arron smiled and said yes. The bear hug worked great today as Nathan didn't cry or have any outbursts, he breathed through the needles and then commented that they didn't even hurt. 3 down 3 to go!
The FFP wasn't ready until 9:30am and Dr Ali has decided the blood products will be dripped over 4 hours. Thank goodness I threw in a few snacks of sausage sticks, fruit, crackers etc. as it was after 1pm by the time we left the hospital.
With the treatments this week and impact of the steroids, Nathan wakes with a burst of sunshine, has a huge breakfast and then fights the tiredness until he is able to nap. He tried a couple of times this morning falling asleep on my lap or in the clinic room that has a couch and TV but didn't succeed until 15 mins before his machine finished dripping. I silenced it and asked the nurse to let the IV run until he woke up. Nathan needed the rest.
His treat for such a great morning was picking Arron up for a late lunch at McDonald's. He quite enjoyed that. Then it was off to pick Carter up from school and then home. He was tired again. Nathan wasn't convinced he should go to music lessons but since I was also taking Justin so that Arron could work on the steps to the deck, he decided he would come. He fought sleep on the way there and then switched so that Carter had his lesson first while he snuggled on my knee. But as heavy as those eyelids were they stayed open. When it was his turn to go in, he did but requested Justin and I stay with him to listen. Nathan did well but only made it two thirds of the way through before he couldn't concentrate anymore.
By the time we arrived home, Nathan was hungry again. Mandarin oranges were at Extra Foods today so Nathan and I picked up a box. They were really good but awfully small. He opted for these and strawberries rather than popcorn. All were tired tonight so we had a low key evening watching Dr Doolittle 3.
With the increased fluid retention from the steroid and the receiving of the blood product today, Nathan has been a lot more clammy than usual. Between the nurses being concerned over him being flushed and him feeling warm to me, we have only taken his temperature 3 times :). Thank goodness he doesn't mind that! Nathan's temperature was normal but we continue to pray he doesn't get any fevers. With the start of school there have been flu bugs and colds already going around. We have been fortunate to remain "bug free" and pray we continue to do so.
The FFP wasn't ready until 9:30am and Dr Ali has decided the blood products will be dripped over 4 hours. Thank goodness I threw in a few snacks of sausage sticks, fruit, crackers etc. as it was after 1pm by the time we left the hospital.
With the treatments this week and impact of the steroids, Nathan wakes with a burst of sunshine, has a huge breakfast and then fights the tiredness until he is able to nap. He tried a couple of times this morning falling asleep on my lap or in the clinic room that has a couch and TV but didn't succeed until 15 mins before his machine finished dripping. I silenced it and asked the nurse to let the IV run until he woke up. Nathan needed the rest.
His treat for such a great morning was picking Arron up for a late lunch at McDonald's. He quite enjoyed that. Then it was off to pick Carter up from school and then home. He was tired again. Nathan wasn't convinced he should go to music lessons but since I was also taking Justin so that Arron could work on the steps to the deck, he decided he would come. He fought sleep on the way there and then switched so that Carter had his lesson first while he snuggled on my knee. But as heavy as those eyelids were they stayed open. When it was his turn to go in, he did but requested Justin and I stay with him to listen. Nathan did well but only made it two thirds of the way through before he couldn't concentrate anymore.
By the time we arrived home, Nathan was hungry again. Mandarin oranges were at Extra Foods today so Nathan and I picked up a box. They were really good but awfully small. He opted for these and strawberries rather than popcorn. All were tired tonight so we had a low key evening watching Dr Doolittle 3.
With the increased fluid retention from the steroid and the receiving of the blood product today, Nathan has been a lot more clammy than usual. Between the nurses being concerned over him being flushed and him feeling warm to me, we have only taken his temperature 3 times :). Thank goodness he doesn't mind that! Nathan's temperature was normal but we continue to pray he doesn't get any fevers. With the start of school there have been flu bugs and colds already going around. We have been fortunate to remain "bug free" and pray we continue to do so.
Wednesday, September 16, 2009
ADI II Day 3
[Arron] The steroids are starting to work already - unfortunately. Nathan's mood swings are going fairly wide right now. We have seen it worse but right now he goes from happy, to crying, to mad, to happy again within 10 minutes.
We had an early start to our day today as with our new plan for leg needles we were supposed to be at the clinic by 8:15am. We showed up then and off nurse Andrea went to let the pharmacy know that we were in the building. The meds came within a few minutes and off Nathan and I went into the examination room. The new method involved me sitting on the stool and Nathan sitting on my lap facing me so that we were giving each other bear hugs. Nathan's legs were to the outside so that the nurses could give him his needles to the thighs. Nathan did pretty well with his breathing and counting to 10 before they would poke him. It still wasn't a treatment without him getting upset but we were done within 5 minutes and off we went. It was nice that we were done our treatment by 8:30 and then just had to wait until after 9 for side effects. Contrast that to the previous time when we'd be in there until 11:30am for leg needles and it seemed positively better. This let me get to work only an hour late but it left Shelley with a little bit grouchy Nathan to deal with.
[Shelley] Nathan was mad after having the needles but slowly worked out his frustration with having them again on his DS. He was happy to leave the clinic as we were going to stop at school. Today was pizza day at school. Nathan did great in the morning and asked that I come back during lunch with more mini honey garlic sticks. Nathan's appetite has already increased. He ate a great lunch and we headed out side but the warm weather made him tired. I suggested we go home and have a rest but wanted to stay at school. The bell went and along with it came the rush of tears. When I asked Nathan why he was upset he said he missed his brother. I asked if he was missing Justin and he said no, he was missing Carter, whom he had just seen, and wanted to give him a hug. So we trotted off to Carter's class and he was able to give Carter a hug. The tears continued in spurts but he still didn't want to leave. Rather than doing the colouring and cutting activity building blocks was his distraction. Soon it was time for drama class. Nathan normally is thrilled with this class but today he opted to sit with me and watch. Par for the course, 2 mins before it was finished he was ready to participate and the cloud had been lifted. He had a good recess playing with Carter and friends and then math was next. Nathan is enjoying learning about patterns and sequences.
With the weather a balmy 32 degrees today we stopped for Slurpee's on the way home. The boys were tired, as was their mother, so we had some quiet time before supper.
Nathan was extremely tired but couldn't go to bed until one more baked potatoe was eaten. He has requested bagels for breakfast so a quick trip to the grocery store after the boys were in bed satisfied his request. And he will not forget. One of the things I find interesting with the steroid is that when Nathan gets an idea in his head he is fixated. The benefit to having been through this once is knowing this will pass.
We had an early start to our day today as with our new plan for leg needles we were supposed to be at the clinic by 8:15am. We showed up then and off nurse Andrea went to let the pharmacy know that we were in the building. The meds came within a few minutes and off Nathan and I went into the examination room. The new method involved me sitting on the stool and Nathan sitting on my lap facing me so that we were giving each other bear hugs. Nathan's legs were to the outside so that the nurses could give him his needles to the thighs. Nathan did pretty well with his breathing and counting to 10 before they would poke him. It still wasn't a treatment without him getting upset but we were done within 5 minutes and off we went. It was nice that we were done our treatment by 8:30 and then just had to wait until after 9 for side effects. Contrast that to the previous time when we'd be in there until 11:30am for leg needles and it seemed positively better. This let me get to work only an hour late but it left Shelley with a little bit grouchy Nathan to deal with.
[Shelley] Nathan was mad after having the needles but slowly worked out his frustration with having them again on his DS. He was happy to leave the clinic as we were going to stop at school. Today was pizza day at school. Nathan did great in the morning and asked that I come back during lunch with more mini honey garlic sticks. Nathan's appetite has already increased. He ate a great lunch and we headed out side but the warm weather made him tired. I suggested we go home and have a rest but wanted to stay at school. The bell went and along with it came the rush of tears. When I asked Nathan why he was upset he said he missed his brother. I asked if he was missing Justin and he said no, he was missing Carter, whom he had just seen, and wanted to give him a hug. So we trotted off to Carter's class and he was able to give Carter a hug. The tears continued in spurts but he still didn't want to leave. Rather than doing the colouring and cutting activity building blocks was his distraction. Soon it was time for drama class. Nathan normally is thrilled with this class but today he opted to sit with me and watch. Par for the course, 2 mins before it was finished he was ready to participate and the cloud had been lifted. He had a good recess playing with Carter and friends and then math was next. Nathan is enjoying learning about patterns and sequences.
With the weather a balmy 32 degrees today we stopped for Slurpee's on the way home. The boys were tired, as was their mother, so we had some quiet time before supper.
Nathan was extremely tired but couldn't go to bed until one more baked potatoe was eaten. He has requested bagels for breakfast so a quick trip to the grocery store after the boys were in bed satisfied his request. And he will not forget. One of the things I find interesting with the steroid is that when Nathan gets an idea in his head he is fixated. The benefit to having been through this once is knowing this will pass.
Monday, September 14, 2009
ADI II Day 1
Nathan started another phase today and it got off to the usual shmozzle. We had to be at the Cancer Center early for blood work today as Nathan's counts had to be at the appropriate levels before we could proceed. We got there at 7:50am and it was nice that they were ready for us shortly. Nathan got accessed easily, no fuss, and we were on our way to RUH for an echocardiogram.
We got to the pediatric reception which is supposed to open at 8 and it was still closed so we sat down to wait. A nurse came out after a few minutes and was surprised to see us there so she opened up the registration after commenting that she didn't know where anyone was. Nathan registered himself and we were off to the next waiting room. Fortunately the technician was just coming to look for us as we got there so off to the echo room we went. Nathan listened very well to the man working the machine and he tried hard to do everything that was asked of him. Unfortunately he tried too hard and that made one test not work but it wasn't a big deal. Nathan got dressed and back we went to the Cancer Center.
We went to the play room and started playing the Game of Life. It didn't have the rules and I couldn't remember them all so we made them up as we went along. At 9 am I went to see if the blood work was back as we didn't have Emla cream on Nathan's back or legs yet and he was scheduled for his lumbar puncture at 10am. When Andrea went to check on the test results the lab said they didn't have Nathan's samples! Yeesh. They had to find them and then run the tests and the results did get back before 10 and Nathan was good to go. The anaesthesiologist actually showed up on time and it looked good, however, the pharmacy didn't start making up the medication until the results were back so we had no chemo drugs at 10. The anaesthesiologist (green men) said he'd be back at 10:30am. This set back started to get to Nathan as he was thirsty AND hungry but still not allowed to eat or drink. He got upset a couple of times but we were getting through it.
While we were waiting they decided to do his checkup with Dr Ali and so we went to the back examination room. Nathan was not particularly cooperative by this point as he just want to get on with it. He enjoys waiting as much as his father does... I think that was passed down through the Trombley genes. Anyway, Dr Ali would tell him to look left and he'd look right... head up, and the head would go down... open your eyes and he'd close them... follow the light and Nathan would go crosseyed! Dr Ali laughed it off and got through it all anyway. It helped that right before he was done the meds and the green men both showed and if Nathan cooperated then we would be able to get on with it so Nathan listened well for the last few minutes.
Off to the procedure room we went and Nathan climbed up on the table. He put his penguin mask on, put the monitor on his own toe and told the anaesthesiologist "I know, I know" as he was trying to explain what would happen next. We kissed him goodnight and he was ready to go to sleep!
While he was out we took the opportunity to talk to Rick (clinic social worker) about how Nathan's leg treatments would proceed this time as we were not going to put up with the farce that happened at the end of the last phase. We went through a few things and we had a few uncomfortable moments but we made a plan. We were first going to check to see if we could go back to the PEG version that Nathan had the slight allergic reaction to but was only 4 needles instead of 24, and failing that, that I would be the one to go in with Nathan and try a bear hug method. As we were finishing up Nathan was done and ready to wake up so we headed back to the procedure room. He was just waking and wanted his Mommy and Daddy but Daddy had to talk to the Dr with Rick to discuss the upcoming treatments. Dr Ali expressed grave concerns about going back to the PEG so that was nixed. He agreed with the plan of me going in with Nathan for the next set of leg needles. He also wanted to make sure that we understood that they all thought we were doing a good job of parenting and that wasn't why they were wanting to make changes. It was just that it wasn't working well the way we were going and we are hoping to make it easier on Nathan and therefore easier on us.
Shelley was with Nathan and had to carry him back to the playroom as he was groggy coming out of the general anaesthetic. Not too groggy to start eating though and Shelley had packed him a good lunch. He started with sandwiches, went through a bag of grapes and then onto a bag of Salt and Vinegar chips - his favourite! We had to stay put while Nathan received Doxorubicin but after that was in we were allowed to go. Again, it had to happen during lunchtime and so they were down to one nurse and it took awhile for Jan to have time to de-access Nathan. We finally got to leave and got home about 1:30pm.
Nathan was tired and not feeling well so had a low key afternoon. By 4:30pm he started feeling nauseated but it wasn't time for the anti-nausea drug Ondansatron. He managed to keep it in check and was able to have the drug around supper time. Nathan is feeling better. The Dexamethasone steroid started tonight. Because he has gotten taller and gained a few pounds since May, when he had the last round of steroids, the dosage was increased slightly. It will take 7 days by the time the hunger has kicked in but we don't mind that. It is the emotional roller coaster that he will be on that keeps us on our toes - he gets that part already from his mother so add the steroids to it. Being through this phase once before we do know that it gets better after the drugs have wore off. As for now, 5 more sets of leg needles.
We got to the pediatric reception which is supposed to open at 8 and it was still closed so we sat down to wait. A nurse came out after a few minutes and was surprised to see us there so she opened up the registration after commenting that she didn't know where anyone was. Nathan registered himself and we were off to the next waiting room. Fortunately the technician was just coming to look for us as we got there so off to the echo room we went. Nathan listened very well to the man working the machine and he tried hard to do everything that was asked of him. Unfortunately he tried too hard and that made one test not work but it wasn't a big deal. Nathan got dressed and back we went to the Cancer Center.
We went to the play room and started playing the Game of Life. It didn't have the rules and I couldn't remember them all so we made them up as we went along. At 9 am I went to see if the blood work was back as we didn't have Emla cream on Nathan's back or legs yet and he was scheduled for his lumbar puncture at 10am. When Andrea went to check on the test results the lab said they didn't have Nathan's samples! Yeesh. They had to find them and then run the tests and the results did get back before 10 and Nathan was good to go. The anaesthesiologist actually showed up on time and it looked good, however, the pharmacy didn't start making up the medication until the results were back so we had no chemo drugs at 10. The anaesthesiologist (green men) said he'd be back at 10:30am. This set back started to get to Nathan as he was thirsty AND hungry but still not allowed to eat or drink. He got upset a couple of times but we were getting through it.
While we were waiting they decided to do his checkup with Dr Ali and so we went to the back examination room. Nathan was not particularly cooperative by this point as he just want to get on with it. He enjoys waiting as much as his father does... I think that was passed down through the Trombley genes. Anyway, Dr Ali would tell him to look left and he'd look right... head up, and the head would go down... open your eyes and he'd close them... follow the light and Nathan would go crosseyed! Dr Ali laughed it off and got through it all anyway. It helped that right before he was done the meds and the green men both showed and if Nathan cooperated then we would be able to get on with it so Nathan listened well for the last few minutes.
Off to the procedure room we went and Nathan climbed up on the table. He put his penguin mask on, put the monitor on his own toe and told the anaesthesiologist "I know, I know" as he was trying to explain what would happen next. We kissed him goodnight and he was ready to go to sleep!
While he was out we took the opportunity to talk to Rick (clinic social worker) about how Nathan's leg treatments would proceed this time as we were not going to put up with the farce that happened at the end of the last phase. We went through a few things and we had a few uncomfortable moments but we made a plan. We were first going to check to see if we could go back to the PEG version that Nathan had the slight allergic reaction to but was only 4 needles instead of 24, and failing that, that I would be the one to go in with Nathan and try a bear hug method. As we were finishing up Nathan was done and ready to wake up so we headed back to the procedure room. He was just waking and wanted his Mommy and Daddy but Daddy had to talk to the Dr with Rick to discuss the upcoming treatments. Dr Ali expressed grave concerns about going back to the PEG so that was nixed. He agreed with the plan of me going in with Nathan for the next set of leg needles. He also wanted to make sure that we understood that they all thought we were doing a good job of parenting and that wasn't why they were wanting to make changes. It was just that it wasn't working well the way we were going and we are hoping to make it easier on Nathan and therefore easier on us.
Shelley was with Nathan and had to carry him back to the playroom as he was groggy coming out of the general anaesthetic. Not too groggy to start eating though and Shelley had packed him a good lunch. He started with sandwiches, went through a bag of grapes and then onto a bag of Salt and Vinegar chips - his favourite! We had to stay put while Nathan received Doxorubicin but after that was in we were allowed to go. Again, it had to happen during lunchtime and so they were down to one nurse and it took awhile for Jan to have time to de-access Nathan. We finally got to leave and got home about 1:30pm.
Nathan was tired and not feeling well so had a low key afternoon. By 4:30pm he started feeling nauseated but it wasn't time for the anti-nausea drug Ondansatron. He managed to keep it in check and was able to have the drug around supper time. Nathan is feeling better. The Dexamethasone steroid started tonight. Because he has gotten taller and gained a few pounds since May, when he had the last round of steroids, the dosage was increased slightly. It will take 7 days by the time the hunger has kicked in but we don't mind that. It is the emotional roller coaster that he will be on that keeps us on our toes - he gets that part already from his mother so add the steroids to it. Being through this phase once before we do know that it gets better after the drugs have wore off. As for now, 5 more sets of leg needles.
Monday, September 7, 2009
AIM II Days 44 - 50
Another week down and another week to go before Nathan starts his last intensive phase ADI II.
It was a good week with both Nathan and Carter starting school. Shelley took the first few days of the week off to make sure Nathan got adjusted well to school. Both he and Carter had a great week of school and are excited about going. Their school, Georges Vanier, is bursting at the seams with students. Carter's classroom is in the dance studio while the grade 7s & 8s homeroom in the gymnasium. Short on space, short on teachers and short on budget - hopefully the province does something right and provides more funding for this school. Shelley also really enjoyed getting some 1 on 1 time with our Justin that she hasn't had in awhile.
We also spent the week doing more work on our new yard. The sod is in, sprinklers are set up, we have a tree planted and a flower bed done.... we are getting there slowly but surely.
As the weekend rolled around we decided to take the opportunity to head back up to the Miller family cabin on the banks of the Carrot River. We hadn't been there since Grandpa Ray's birthday last year so it had been awhile. All three boys had tons of fun this weekend. We went quadding, frog hunting, fishing, played horseballs, played cards, visited with family and even had a little baseball game, oh and the kids got plenty of video game time as well which makes them happy. Carter even learned how to play Kaiser and he picked it up quite quickly.
The fishing wasn't great but Justin was still pretty excited when he caught a leaf. It was his first time using a real hook and he told everyone that he caught leaf... we should have gotten it mounted! Carter was the best fisherman on the weekend as he caught a couple of goldeyes and a walleye. Nathan also caught a huge goldeye and we were able to explore on a rock island for a half hour as well. The boys always like seeing what treasures they can discover - clams, crayfish, fossils and even scat are all exciting.
This week should seem like a normal week with Shelley working most days and Nathan attending school all week. We'll take it as it will soon turn again and remind us how not normal our life has been for the past year.
We thank God for being able to have a week like we had followed up by a real fun and normal weekend!
It was a good week with both Nathan and Carter starting school. Shelley took the first few days of the week off to make sure Nathan got adjusted well to school. Both he and Carter had a great week of school and are excited about going. Their school, Georges Vanier, is bursting at the seams with students. Carter's classroom is in the dance studio while the grade 7s & 8s homeroom in the gymnasium. Short on space, short on teachers and short on budget - hopefully the province does something right and provides more funding for this school. Shelley also really enjoyed getting some 1 on 1 time with our Justin that she hasn't had in awhile.
We also spent the week doing more work on our new yard. The sod is in, sprinklers are set up, we have a tree planted and a flower bed done.... we are getting there slowly but surely.
As the weekend rolled around we decided to take the opportunity to head back up to the Miller family cabin on the banks of the Carrot River. We hadn't been there since Grandpa Ray's birthday last year so it had been awhile. All three boys had tons of fun this weekend. We went quadding, frog hunting, fishing, played horseballs, played cards, visited with family and even had a little baseball game, oh and the kids got plenty of video game time as well which makes them happy. Carter even learned how to play Kaiser and he picked it up quite quickly.
The fishing wasn't great but Justin was still pretty excited when he caught a leaf. It was his first time using a real hook and he told everyone that he caught leaf... we should have gotten it mounted! Carter was the best fisherman on the weekend as he caught a couple of goldeyes and a walleye. Nathan also caught a huge goldeye and we were able to explore on a rock island for a half hour as well. The boys always like seeing what treasures they can discover - clams, crayfish, fossils and even scat are all exciting.
This week should seem like a normal week with Shelley working most days and Nathan attending school all week. We'll take it as it will soon turn again and remind us how not normal our life has been for the past year.
We thank God for being able to have a week like we had followed up by a real fun and normal weekend!
Monday, August 31, 2009
AIM II Day 36-43
The last week has been a blur. It was extremely nice not having to be at the clinic, both for Nathan and us. So we spent it getting ready for a garage sale. In our other house, we didn't have a garage and certainly didn't have the space to get organized. We were able to get rid of a fair bit and should be able to park 2 vehicles in the garage. Purging is a great feeling.
Nathan and I were at the clinic this morning for vincristine and methotrexate. Nathan's WBC was 2.41 with neutrophils ar 1.32 so he received another accelerated dosage. Dr Mopofu was the doctor in the clinic today and was a refreshing change. It took the morning to get everything done but Nathan now has 13 days till the next clinic visit and the start date of the next phase. The break couldn't have come at a better time as school starts tomorrow. Nathan will be able to join Carter on the first day back to school and is excited. It will be nice to get some routine back in our lives. Once Sept 14 arrives Nathan won't be able to attend and if he can it will be a day here or there as his clinic visits will be 3 times a week or neutrophils too low to attend.
I am looking forward to having some one on one time with Justin. Speaking of Justin I have a cute story to share. He was helping me plant a few shrubs in our front flower bed the other night when a little girl he likes to play with came over from down the street. She is almost 5 but the 2 get a long great. They went off to play and a short time later I went to see what they were up too. When Justin saw me he decided he was done playing and told her he was going to go back to work with his mom. She asked if she could work too. Justin told her that she couldn't because she didn't have any work gloves like him. She hesitated a moment and then said,"That's okay, I can come and watch you work and tell you what you are doing wrong!" Man did I laugh! Justin just looked confused. Kids say the funniest things!
Carter has been playing 3 on 3 hockey and really enjoying it. He had a game last night and it was a very close game. They would lead or the other team would tie it up and then lead. Carter's team was down by 1 and with 6 seconds left in the game Carter got the tieing goal - his first of the evening but a very memorable one. He was thrilled. We have Carter registered for regular hockey and Nathan has requested that he get to play real hockey this year. Arron and I will register him but will play it by ear as to whether he will be able to attend. At least he won't miss too much as it shouldn't start till October.
Anyway I will end this post as the kids are actually in bed and asleep at a decent time. All were excited for tomorrow so I should follow suit. Thank you for the continued prayers. We see a faint light in the distance. We pray Nathan continues to respond as well as he has.
Nathan and I were at the clinic this morning for vincristine and methotrexate. Nathan's WBC was 2.41 with neutrophils ar 1.32 so he received another accelerated dosage. Dr Mopofu was the doctor in the clinic today and was a refreshing change. It took the morning to get everything done but Nathan now has 13 days till the next clinic visit and the start date of the next phase. The break couldn't have come at a better time as school starts tomorrow. Nathan will be able to join Carter on the first day back to school and is excited. It will be nice to get some routine back in our lives. Once Sept 14 arrives Nathan won't be able to attend and if he can it will be a day here or there as his clinic visits will be 3 times a week or neutrophils too low to attend.
I am looking forward to having some one on one time with Justin. Speaking of Justin I have a cute story to share. He was helping me plant a few shrubs in our front flower bed the other night when a little girl he likes to play with came over from down the street. She is almost 5 but the 2 get a long great. They went off to play and a short time later I went to see what they were up too. When Justin saw me he decided he was done playing and told her he was going to go back to work with his mom. She asked if she could work too. Justin told her that she couldn't because she didn't have any work gloves like him. She hesitated a moment and then said,"That's okay, I can come and watch you work and tell you what you are doing wrong!" Man did I laugh! Justin just looked confused. Kids say the funniest things!
Carter has been playing 3 on 3 hockey and really enjoying it. He had a game last night and it was a very close game. They would lead or the other team would tie it up and then lead. Carter's team was down by 1 and with 6 seconds left in the game Carter got the tieing goal - his first of the evening but a very memorable one. He was thrilled. We have Carter registered for regular hockey and Nathan has requested that he get to play real hockey this year. Arron and I will register him but will play it by ear as to whether he will be able to attend. At least he won't miss too much as it shouldn't start till October.
Anyway I will end this post as the kids are actually in bed and asleep at a decent time. All were excited for tomorrow so I should follow suit. Thank you for the continued prayers. We see a faint light in the distance. We pray Nathan continues to respond as well as he has.
Sunday, August 23, 2009
AIM II Day 29 - 35
Its been a busy and emotional week. Monday the 17th was a decent morning at the clinic. It wasn't too long before the medication was ready. Nurse Andrea gave Nathan the heads up that she was going to pharmacy to get the meds so I convinced Nathan we should race Andrea to see who would get to the room first. We won which made Nathan happy but then when he saw the needles, he immediately hugged his legs and it was difficult convincing him he had to get the needles done. He did but in tears. That night he asked if he had to go to the clinic the next day and when I said no, he was thrilled.
The kids have filled their week with playing outside. With the large yard and nothing behind us, our backyard has become home base for cops and robbers as well as ball games. Now that the play structure is up, that too has provided something extra for the kids to do.
Wednesday was an emotionally draining day. Dr Ali came up to Nathan and I shortly after we arrived and told Nathan that Mom and Dad were no longer allowed to be in the room when the leg needles were being given. His reasoning was the nurses were concerned that this was getting too difficult for all involved and taking up to 40 mins. was taking too much time. My expression must have said it all as I was speechless. Firstly I couldn't believe he was telling Nathan and secondly it was without any discuss with Arron and I as to what we thought was best for our child. Arron came to the clinic shortly after this happened and we were able to meet with some staff. They agreed that this was presented poorly. All agreed that something needed to change as Nathan wasn't handling these needles well. The solution instead was for Arron and I to stand outside the room, listen to Nathan ask for his parents and then scream. Not sure what was better about this.
Thursday was another day to the clinic. Nathan had the methotrexate via spinal treatment so had no issues getting accessed and going in. To him this part is easy - there is no pain, you get to go to sleep and the reward is you get to eat when you wake up. He also had accelerated dosage of methotrexate and vinchristine. He handled the treatment well but I do think having a full stomach really helped. Nathan didn't complain of stomach cramps.
Carter had a friend over in the afternoon and Nathan was happy to join in the fun.
Friday morning started off great. Nathan was in a great mood. We immediately sat down to play cards upon arriving and maybe 15 mins later nurse Heather informed us it wouldn't be too long. Nathan needed to use the washroom shortly thereafter. When we walked past Susan the Administrator/Research individual, she bluntly told Nathan she got to be the individual in the room with him. Susan has been on holidays the last 6 weeks and even before that Nathan has had not much to do with her. Nathan didn't say anything to her but kept walking. Then he looked at me and said "I am not getting any more leg needles." His apprehension started and by the time we were out of the washroom, he was determined not to co-operate. Nathan was a little more difficult than usual trying to make it a "chase me game". The cute thing was he went in a round about way to the room. However the difficult part was they wouldn't let me bring him into the room as we were told we were going to be able to do on Wednesday. So when they took him, he went in kicking and screaming. The room has an access by the nurses station and a second door by the waiting room. I walked from the nursing station door to the waiting room door and I could hear Susan telling Nathan that if he hadn't been bad boy she wouldn't have to be in there. I opened the door and told her that he wasn't a bad boy. He wasn't in there because he had misbehaved. She was quick to apologize but I was extremely upset. I was astounded and thoroughly disappointed with how they treated Nathan. They are asking us to stay out of the room as they think the situation would be better if we weren't in there and to me it was 10 times worse. I realize I am the mother bear and I know Nathan has gotten to the point of being very uncooperative with the needles. But this isn't a one time thing. Nathan has hit a brick wall and is tired of the leg needles. He did so well but we have to remember he is only 5. How would we handle getting leg needles every two days for up ten weeks? They haven't done Nathan, or us as parents, any favours by handling the situation as they have. They weren't trying to work with him (or us) to handle the needle. The medical profession cares about getting the medicine delivered but has not given any care or thought to the emotional impact this entire situation has had on Nathan. That's why Nathan does not talk about the needles or the clinic when we leave. He puts it out of his mind or at least buries it until asking before going to bed "Do I have to have the leg needles next day?" And it took just as long if not longer - so much for saving time. Arron and I have 3 weeks to figure out how to get Nathan to focus on something else other than the needle and the pain. We have no idea how to make the needles a less traumatic experience especially when there is no guarantee the staff will be professional. We know that he has to have them done - that's not in question, but surely there has to be a better way.
The kids have filled their week with playing outside. With the large yard and nothing behind us, our backyard has become home base for cops and robbers as well as ball games. Now that the play structure is up, that too has provided something extra for the kids to do.
Wednesday was an emotionally draining day. Dr Ali came up to Nathan and I shortly after we arrived and told Nathan that Mom and Dad were no longer allowed to be in the room when the leg needles were being given. His reasoning was the nurses were concerned that this was getting too difficult for all involved and taking up to 40 mins. was taking too much time. My expression must have said it all as I was speechless. Firstly I couldn't believe he was telling Nathan and secondly it was without any discuss with Arron and I as to what we thought was best for our child. Arron came to the clinic shortly after this happened and we were able to meet with some staff. They agreed that this was presented poorly. All agreed that something needed to change as Nathan wasn't handling these needles well. The solution instead was for Arron and I to stand outside the room, listen to Nathan ask for his parents and then scream. Not sure what was better about this.
Thursday was another day to the clinic. Nathan had the methotrexate via spinal treatment so had no issues getting accessed and going in. To him this part is easy - there is no pain, you get to go to sleep and the reward is you get to eat when you wake up. He also had accelerated dosage of methotrexate and vinchristine. He handled the treatment well but I do think having a full stomach really helped. Nathan didn't complain of stomach cramps.
Carter had a friend over in the afternoon and Nathan was happy to join in the fun.
Friday morning started off great. Nathan was in a great mood. We immediately sat down to play cards upon arriving and maybe 15 mins later nurse Heather informed us it wouldn't be too long. Nathan needed to use the washroom shortly thereafter. When we walked past Susan the Administrator/Research individual, she bluntly told Nathan she got to be the individual in the room with him. Susan has been on holidays the last 6 weeks and even before that Nathan has had not much to do with her. Nathan didn't say anything to her but kept walking. Then he looked at me and said "I am not getting any more leg needles." His apprehension started and by the time we were out of the washroom, he was determined not to co-operate. Nathan was a little more difficult than usual trying to make it a "chase me game". The cute thing was he went in a round about way to the room. However the difficult part was they wouldn't let me bring him into the room as we were told we were going to be able to do on Wednesday. So when they took him, he went in kicking and screaming. The room has an access by the nurses station and a second door by the waiting room. I walked from the nursing station door to the waiting room door and I could hear Susan telling Nathan that if he hadn't been bad boy she wouldn't have to be in there. I opened the door and told her that he wasn't a bad boy. He wasn't in there because he had misbehaved. She was quick to apologize but I was extremely upset. I was astounded and thoroughly disappointed with how they treated Nathan. They are asking us to stay out of the room as they think the situation would be better if we weren't in there and to me it was 10 times worse. I realize I am the mother bear and I know Nathan has gotten to the point of being very uncooperative with the needles. But this isn't a one time thing. Nathan has hit a brick wall and is tired of the leg needles. He did so well but we have to remember he is only 5. How would we handle getting leg needles every two days for up ten weeks? They haven't done Nathan, or us as parents, any favours by handling the situation as they have. They weren't trying to work with him (or us) to handle the needle. The medical profession cares about getting the medicine delivered but has not given any care or thought to the emotional impact this entire situation has had on Nathan. That's why Nathan does not talk about the needles or the clinic when we leave. He puts it out of his mind or at least buries it until asking before going to bed "Do I have to have the leg needles next day?" And it took just as long if not longer - so much for saving time. Arron and I have 3 weeks to figure out how to get Nathan to focus on something else other than the needle and the pain. We have no idea how to make the needles a less traumatic experience especially when there is no guarantee the staff will be professional. We know that he has to have them done - that's not in question, but surely there has to be a better way.
Sunday, August 16, 2009
AIM II Day 24-28
The days at the clinic are getting a little more difficult. Wednesday was another round of leg needles and it took a phone call to Arron to get Nathan into the nurse's room to have the Erwina Asparginase administered. The clinic was busier than usual as Dr Ali was tied up with one family. Lauren who is 5 and is in the maintenance part of being treated for ALL, developed a very rare allergic reaction to the Methotrexate chemo pill. The family was given their options which essentially meant the parents had to decide whether they would discontinue treatment completely or take another route.
Friday Arron had an EDO so he came to the clinic with us. Nathan again did not want to receive the leg needles. He is at the point that breathing through them isn't working. He musters up control to count but soon after the needle is in he screams. Then he tries to forget about it by being funny.
Although Nathan has it difficult we were reminded again on Friday that things could be worse. Another little boy, Owen who is somewhere between 3 and 4, relapsed. We have seen too many of these cases in our days at the clinic and makes me question what with all the improvement in medication why these children need to suffer as they do. Watching the anguish these families are faced with makes being at the clinic all that more difficult. My heart goes out to them.
Dr Ali had a rough week with his group of patients. As a result strict orders were provided for Nathan to receive his fresh frozen plasma over a 4 hour period to ensure he had no negative reaction. I was quite surprised by these instructions since Nathan has being receiving the plasma after the 3rd round of leg needles since March and it has never dripped longer than 2 hours. So Friday was a long, draining day.
We count our blessings that Nathan is doing well. He had a good weekend and took the opportunity to play with his brothers and some friends. Nathan will have a heavy week of treatment this week with Tuesday being the only day not at the clinic. Mon, Wed and Friday are leg needles and then none again until Sept 14th. Once we reach September 14th he will have 12 more rounds of leg needles between then and the middle of November and then they should be done.
Friday Arron had an EDO so he came to the clinic with us. Nathan again did not want to receive the leg needles. He is at the point that breathing through them isn't working. He musters up control to count but soon after the needle is in he screams. Then he tries to forget about it by being funny.
Although Nathan has it difficult we were reminded again on Friday that things could be worse. Another little boy, Owen who is somewhere between 3 and 4, relapsed. We have seen too many of these cases in our days at the clinic and makes me question what with all the improvement in medication why these children need to suffer as they do. Watching the anguish these families are faced with makes being at the clinic all that more difficult. My heart goes out to them.
Dr Ali had a rough week with his group of patients. As a result strict orders were provided for Nathan to receive his fresh frozen plasma over a 4 hour period to ensure he had no negative reaction. I was quite surprised by these instructions since Nathan has being receiving the plasma after the 3rd round of leg needles since March and it has never dripped longer than 2 hours. So Friday was a long, draining day.
We count our blessings that Nathan is doing well. He had a good weekend and took the opportunity to play with his brothers and some friends. Nathan will have a heavy week of treatment this week with Tuesday being the only day not at the clinic. Mon, Wed and Friday are leg needles and then none again until Sept 14th. Once we reach September 14th he will have 12 more rounds of leg needles between then and the middle of November and then they should be done.
Tuesday, August 11, 2009
AIM II Days 15 - 23
With last week off from treatment, Nathan spent it regaining his appetite, playing with the kids on the block, biking, and over all feeling pretty good.
He resumed treatment yesterday and his counts hadn't dropped too much since the last treatment. So he received the increased dosage of methotrexate, vincristine, and had the leg needles, Erwina asparginase. It was a long day at the clinic arriving at 9am. Since they had to wait for the blood work to come back before writing orders, it was 12pm before he was finally accessed. He did well with his leg needles. The first one didn't hurt but the second one did. I think it is getting harder for him to not let it get to him. I am in the final count down of these - 5 more sets over this week and next and then another 12 sets between September and November. We are looking forward to these being done.
Thank you to Johnathan and Ella's cool Auntie Michelle. Nathan had a lovely letter from her which we read at the clinic yesterday offering him encouragement to get through the leg needles. He is looking forward to going to Ruckers with his brothers! So thank you for thinking of him.
Nathan was tired we he got home so watched a movie with Justin and Grandma Darlene before accepting the offer to go for a Slurpee with Auntie Pam, Carter and the cousins. He fell asleep on the way home. When he woke up he didn't like the smell of supper although it was one of his favourites - shrimp with noodles. So upstairs to our room he went to watch tv. Arron taught him how to use the intercom on the phone so needless to say we had a few calls. Carter managed to convince him to go and buy some ice tea from their friends who had set up a stand down the block. He proceeded to have a good night biking and jumping on the neighbors trampoline.
Today was a little quieter but he was feeling well tonight so Grandma Darlene and I took the boys and their bikes down by the river for a walk. Nathan had to stop every couple feet for me to take his picture.
Tomorrow is leg needles again. Looking forward to having another set behind us.
He resumed treatment yesterday and his counts hadn't dropped too much since the last treatment. So he received the increased dosage of methotrexate, vincristine, and had the leg needles, Erwina asparginase. It was a long day at the clinic arriving at 9am. Since they had to wait for the blood work to come back before writing orders, it was 12pm before he was finally accessed. He did well with his leg needles. The first one didn't hurt but the second one did. I think it is getting harder for him to not let it get to him. I am in the final count down of these - 5 more sets over this week and next and then another 12 sets between September and November. We are looking forward to these being done.
Thank you to Johnathan and Ella's cool Auntie Michelle. Nathan had a lovely letter from her which we read at the clinic yesterday offering him encouragement to get through the leg needles. He is looking forward to going to Ruckers with his brothers! So thank you for thinking of him.
Nathan was tired we he got home so watched a movie with Justin and Grandma Darlene before accepting the offer to go for a Slurpee with Auntie Pam, Carter and the cousins. He fell asleep on the way home. When he woke up he didn't like the smell of supper although it was one of his favourites - shrimp with noodles. So upstairs to our room he went to watch tv. Arron taught him how to use the intercom on the phone so needless to say we had a few calls. Carter managed to convince him to go and buy some ice tea from their friends who had set up a stand down the block. He proceeded to have a good night biking and jumping on the neighbors trampoline.
Today was a little quieter but he was feeling well tonight so Grandma Darlene and I took the boys and their bikes down by the river for a walk. Nathan had to stop every couple feet for me to take his picture.
Tomorrow is leg needles again. Looking forward to having another set behind us.
Monday, August 3, 2009
AIM II Days 13 & 14
We had a good weekend at the Trombley family reunion. It was very nice catching up with all the relatives that made the effort to attend. It would have been nice to see a few more faces there but it was great fun nonetheless. It was a challenge for Shelley and I to try to balance visiting and spending with family versus trying to make sure we were not overdoing it with Nathan.
Nathan handled the days fairly well. Saturday he got a little overtired and not feeling well and so he had to have a rest throughout supper. That turned into him not really coming out of G&G's trailer until it was time to back to Lisa's to sleep. Sunday Nathan did much better. He even went swimming for the first time in 10 months or so. He really enjoyed swimming and really enjoyed "the girls" that took him swimming. They were distant cousins Skylar and Whitney and Nathan talked about them non-stop on Monday.
Not only did Nathan get to go swimming but he came golfing with us on Saturday and drove the cart by himself. He was pretty stoked about that. Carter skipped golfing to play in the horseballs tournament, and he and my cousin Twyla made it to the A finals before the rain ended the tournament. Carter is pretty sure they would have won the whole thing!
Sunday we participated in a golf tournament to support Leukemia and Lymphoma that was being hosted by a friend, Bill Gowan. Bill put on an excellent event, he had over 100 golfers and everything went very smooth. The weather wasn't perfect but it was good enough. The prizes were great and the supper was wonderful. Great job Bill!
I will get some pictures up from the reunion some time this week. Nathan has no treatments this week however the treatments from last week were supposed to take 7-10 days to kick his blood counts so by the end of this week I imagine his counts will be pretty low. He did guarantee me though that he was going to ride his bike tomorrow.
Lastly, quite a few of you know that Shelley and I have signed up a slopitch team to play in a fundraising tournament for breast cancer. Please consider sponsoring Shelley or Arron. This is another very worthwhile cause.
Nathan handled the days fairly well. Saturday he got a little overtired and not feeling well and so he had to have a rest throughout supper. That turned into him not really coming out of G&G's trailer until it was time to back to Lisa's to sleep. Sunday Nathan did much better. He even went swimming for the first time in 10 months or so. He really enjoyed swimming and really enjoyed "the girls" that took him swimming. They were distant cousins Skylar and Whitney and Nathan talked about them non-stop on Monday.
Not only did Nathan get to go swimming but he came golfing with us on Saturday and drove the cart by himself. He was pretty stoked about that. Carter skipped golfing to play in the horseballs tournament, and he and my cousin Twyla made it to the A finals before the rain ended the tournament. Carter is pretty sure they would have won the whole thing!
Sunday we participated in a golf tournament to support Leukemia and Lymphoma that was being hosted by a friend, Bill Gowan. Bill put on an excellent event, he had over 100 golfers and everything went very smooth. The weather wasn't perfect but it was good enough. The prizes were great and the supper was wonderful. Great job Bill!
I will get some pictures up from the reunion some time this week. Nathan has no treatments this week however the treatments from last week were supposed to take 7-10 days to kick his blood counts so by the end of this week I imagine his counts will be pretty low. He did guarantee me though that he was going to ride his bike tomorrow.
Lastly, quite a few of you know that Shelley and I have signed up a slopitch team to play in a fundraising tournament for breast cancer. Please consider sponsoring Shelley or Arron. This is another very worthwhile cause.
Saturday, August 1, 2009
AIM II Day 10-12
It was a good thing Nathan had a good day Monday with the leg needles as the remainder of the week wasn't so.
Wednesday he was leery to have them done and his pain level was low as he cried throughout the needles. Thursday he was tired. We had a long wait at the clinic for blood work, doctors examination and then for the meds. Nathan's white blood cells were really good so he received the vincristine and accelerated dosage of the methotrexate. We were home shortly before two and the two of us went immediately for a nap. He was exhausted.
Friday morning Nathan was good to go to the clinic but with this being the fourth day there this week, he didn't want to be accessed. So we waited, and we waited. Thank goodness it was a quiet morning as it allowed some leeway to when things were done. Finally after negotiating the ability to watch a DVD in the small examining room, he was accessed in order to receive plasma. The leg needles were ready by this point but again Nathan wasn't. It took a few minutes to convince him to have both needles done at the same time as all just wanted them done. A little convincing and a lot of tears got the final set completed.
Now we have a 10 day break and have started it off with a trip to Carrot River for a family reunion. The kids are excited! Carter wants to play horse balls and golf and Nathan just wants to learn to drive the golf cart by himself. We are looking forward to the week break from the clinic and the needles and praying the rest will give him(us) the strength and energy to face the next set.
Wednesday he was leery to have them done and his pain level was low as he cried throughout the needles. Thursday he was tired. We had a long wait at the clinic for blood work, doctors examination and then for the meds. Nathan's white blood cells were really good so he received the vincristine and accelerated dosage of the methotrexate. We were home shortly before two and the two of us went immediately for a nap. He was exhausted.
Friday morning Nathan was good to go to the clinic but with this being the fourth day there this week, he didn't want to be accessed. So we waited, and we waited. Thank goodness it was a quiet morning as it allowed some leeway to when things were done. Finally after negotiating the ability to watch a DVD in the small examining room, he was accessed in order to receive plasma. The leg needles were ready by this point but again Nathan wasn't. It took a few minutes to convince him to have both needles done at the same time as all just wanted them done. A little convincing and a lot of tears got the final set completed.
Now we have a 10 day break and have started it off with a trip to Carrot River for a family reunion. The kids are excited! Carter wants to play horse balls and golf and Nathan just wants to learn to drive the golf cart by himself. We are looking forward to the week break from the clinic and the needles and praying the rest will give him(us) the strength and energy to face the next set.
Tuesday, July 28, 2009
AIM II Day 6-9
July is fast approaching its end and we have never been more excited! For us it means one more month of treatment done and one step closer to the end.
We had a good weekend. Nathan felt good on Saturday so we went up to Murray Lake to visit our friends the Zakresky's. We had beautiful weather. The kids enjoyed playing ball, catching minnow's, paddle boating, playing in the sand, tubing (Carter and Katie that is) and fishing. Surprisingly the boys stayed awake until we arrived home Saturday night. Thanks for the visit. A year is way too long!
On Monday Nathan had another round of leg needles. He did really well. The clinic was busy with older kids this day so Nathan was asked to go to the procedure room. He jumped up and was ready. I was surprised but really appreciated the cooperation. He did really well with the needles. Nathan and I played a little bit of electronics together but we actually played Restaurant much longer. He enjoyed taking my order, finding the food and then of course providing me the bill.
Tomorrow is another round of leg needles so am hoping the morning goes as smoothly as yesterday.
We had a good weekend. Nathan felt good on Saturday so we went up to Murray Lake to visit our friends the Zakresky's. We had beautiful weather. The kids enjoyed playing ball, catching minnow's, paddle boating, playing in the sand, tubing (Carter and Katie that is) and fishing. Surprisingly the boys stayed awake until we arrived home Saturday night. Thanks for the visit. A year is way too long!
On Monday Nathan had another round of leg needles. He did really well. The clinic was busy with older kids this day so Nathan was asked to go to the procedure room. He jumped up and was ready. I was surprised but really appreciated the cooperation. He did really well with the needles. Nathan and I played a little bit of electronics together but we actually played Restaurant much longer. He enjoyed taking my order, finding the food and then of course providing me the bill.
Tomorrow is another round of leg needles so am hoping the morning goes as smoothly as yesterday.
Friday, July 24, 2009
AIM II Day 4-5
I had the day off of work today so Shelley got the day off from the Cancer Center this morning. Carter, Nathan and I went in around 9 am and it was not very busy at all. Nathan got in within a few minutes and, after a small discussion, he had his port accessed and the plasma started. As we've mentioned before every third leg needle they automatically give plasma. As we finished that the leg needles arrived from the pharmacy but Nathan wasn't ready for them just yet. We had some time today as it takes over an hour for the plasma to run through so we agreed to go back to the play room to have a 10 minute break.
When it was Nathan's turn again to go back in to get the leg needles he went fairly willingly. He also got the bandages off and had his leg disinfected without fuss which was nice. The first leg needle went well and onto the second one. Half way through the second one he starts crying and making a face and it looked like it was causing him no small discomfort BUT just before the needle was done his face broke into a huge grin. He was tricking us and was actually handling the needle well. I think that those tricks actually trick him more than us as it really does give him something to think about and distract him from what is actually going on. Whatever works!
We had to wait for the plasma to be done, which didn't take much longer, and we were on our way home by 10:45. All in all a pretty stress free day at the clinic.
With the nice weather, Darrell and Pam invited us over in the evening so the kids could have a watergun fight and cool off. There was a lot of reminding of when they could and could not shoot the other person (no shooting while refilling, no shooting in the face, etc) but it went as well as waterguns go. Auntie Lorrie even got in on the water gun action to have a little battle with the boys. I think she got the worst of it just because they were in swimming gear and she was in her regular clothes.
As we were getting ready to wind up our evening Nathan started to get a little whiny which is always the sign that he needs to get home fairly quickly or things start to go downhill fast. Unfortunately we weren't as fast as we should have been and Nathan really started to not feel well (which is why he gets whiny). Then as we were walking back out to the van Nathan got sick. After a few more minutes to clean that up we were finally on our way home. (Unfortunately for Uncle Darrell he had to be the one to clean off his drive way. But on the bright side at least it didn't land on someone's car! Thank you for cleaning up after Nathan.) Carter was a very big help as it took both Shelley and I to get Nathan in, cleaned up and ready for bed. That left Carter to herd his little brother into the house. He then got Justin upstairs and even helped him change into his pajamas. That was more like it! We could use that kind of help from him more often. Nathan went straight to bed and he had to have a bowl with him. He fell asleep almost instantly. Carter and Justin were a little more wired up and took a little longer to go down but they are finally asleep as well.
We need to be a little more cognisant of Nathan's behaviour and get him out BEFORE he gets to that point. It is a learning process for us all but as long as we are moving forward we will be able to handle all of these little trials.
Tomorrow we are going to attempt our first longer range outing with Nathan. We are going to go up to Murray Lake for the day to visit some good friends from Calgary. Of course, it all depends on how Nathan feels in the morning and if he starts his day like we just ended it then the trip will be off. If we do get to go, hopefully we can manage to keep Nathan from getting too worn out as he always wants to keep up with the other kids.
When it was Nathan's turn again to go back in to get the leg needles he went fairly willingly. He also got the bandages off and had his leg disinfected without fuss which was nice. The first leg needle went well and onto the second one. Half way through the second one he starts crying and making a face and it looked like it was causing him no small discomfort BUT just before the needle was done his face broke into a huge grin. He was tricking us and was actually handling the needle well. I think that those tricks actually trick him more than us as it really does give him something to think about and distract him from what is actually going on. Whatever works!
We had to wait for the plasma to be done, which didn't take much longer, and we were on our way home by 10:45. All in all a pretty stress free day at the clinic.
With the nice weather, Darrell and Pam invited us over in the evening so the kids could have a watergun fight and cool off. There was a lot of reminding of when they could and could not shoot the other person (no shooting while refilling, no shooting in the face, etc) but it went as well as waterguns go. Auntie Lorrie even got in on the water gun action to have a little battle with the boys. I think she got the worst of it just because they were in swimming gear and she was in her regular clothes.
As we were getting ready to wind up our evening Nathan started to get a little whiny which is always the sign that he needs to get home fairly quickly or things start to go downhill fast. Unfortunately we weren't as fast as we should have been and Nathan really started to not feel well (which is why he gets whiny). Then as we were walking back out to the van Nathan got sick. After a few more minutes to clean that up we were finally on our way home. (Unfortunately for Uncle Darrell he had to be the one to clean off his drive way. But on the bright side at least it didn't land on someone's car! Thank you for cleaning up after Nathan.) Carter was a very big help as it took both Shelley and I to get Nathan in, cleaned up and ready for bed. That left Carter to herd his little brother into the house. He then got Justin upstairs and even helped him change into his pajamas. That was more like it! We could use that kind of help from him more often. Nathan went straight to bed and he had to have a bowl with him. He fell asleep almost instantly. Carter and Justin were a little more wired up and took a little longer to go down but they are finally asleep as well.
We need to be a little more cognisant of Nathan's behaviour and get him out BEFORE he gets to that point. It is a learning process for us all but as long as we are moving forward we will be able to handle all of these little trials.
Tomorrow we are going to attempt our first longer range outing with Nathan. We are going to go up to Murray Lake for the day to visit some good friends from Calgary. Of course, it all depends on how Nathan feels in the morning and if he starts his day like we just ended it then the trip will be off. If we do get to go, hopefully we can manage to keep Nathan from getting too worn out as he always wants to keep up with the other kids.
Wednesday, July 22, 2009
AIM II Day 2-3
Nathan had another round of leg needles this morning. I have been given the idea of having a calendar for Nathan to cross off each treatment so that he can see that this is not something that is permanent and so that he can see how many are remaining. He was excited to be able to mark one more off!
Thank you God for the beautiful weather (finally)! Feeling a little house bound lately we decided to be adventourous this afternoon and headed to John Lake playground. What a fabulous afternoon! The city parks had the theme of "Olympics" today. We packed a picnic lunch and met Auntie Pam and cousins Ella and Johnathan. At first there were only a few kids there but it soon filled up. Its nice to going and seeing the kids know other children. They started the festivities with opening ceremonies. The kids followed the playground leader singing Oh Canada. Nathan was front of the line holding the banner with the leader while the others choose to take the end. Some of the contests they had were hula hoop, sponge game where you had two teams and had to try and empty your bucket first by wetting a spunge and then running back to your teams pail to squeeze out the water; wheel barrow race; one legged race; three legged race; and then in the water they had a race pushing the ball with their nose and pushing sponges with their feet. They were given gold, sliver and bronze medals which were hand made, for their placements. The kids loved it. Between the games and the food, the public library had story time in the park. Ella and Justin enjoyed that while Carter, Nathan and Johnathan enjoyed playing catch with a football in the paddling pool. Needless to say Nathan fell asleep on the ride home. It was great to see the kids playing and having fun. It really hasn't felt like summer for us this year so nice to have had today.
Thank you God for the beautiful weather (finally)! Feeling a little house bound lately we decided to be adventourous this afternoon and headed to John Lake playground. What a fabulous afternoon! The city parks had the theme of "Olympics" today. We packed a picnic lunch and met Auntie Pam and cousins Ella and Johnathan. At first there were only a few kids there but it soon filled up. Its nice to going and seeing the kids know other children. They started the festivities with opening ceremonies. The kids followed the playground leader singing Oh Canada. Nathan was front of the line holding the banner with the leader while the others choose to take the end. Some of the contests they had were hula hoop, sponge game where you had two teams and had to try and empty your bucket first by wetting a spunge and then running back to your teams pail to squeeze out the water; wheel barrow race; one legged race; three legged race; and then in the water they had a race pushing the ball with their nose and pushing sponges with their feet. They were given gold, sliver and bronze medals which were hand made, for their placements. The kids loved it. Between the games and the food, the public library had story time in the park. Ella and Justin enjoyed that while Carter, Nathan and Johnathan enjoyed playing catch with a football in the paddling pool. Needless to say Nathan fell asleep on the ride home. It was great to see the kids playing and having fun. It really hasn't felt like summer for us this year so nice to have had today.
Monday, July 20, 2009
AIM II Day 1
Nathan's counts were high enough to proceed with the next phase today - Augment Interim Maintenance II. He has done this phase once before and although the first two weeks will require a lot of visits to the clinic, I do remember him feeling relatively well throughout the last time. Today he had methotrexate through the lumbar puncture, erwina aspariginase via leg needles (thankfully these were done while he was sleeping), vincrstyne and methotrexate through IV.
Nathan was in a good mood going to the clinic. His lumbar treatment was to be at 9am but Dr Mpoffu was not yet back from Regina. Dr Ali headed there today so they traded off. When Dr Mpoffu was ready to examine Nathan, Nathan was all business. He climbed onto the examining table and politely told Dr Mpoffu he was ready. Dr Mpoffu had to ask the usual questions which Nathan didn't have much patience for. Nathan then proceeded to lighten the mood by asking Dr Mpoffu, "What's a kid to do around here to get some food?" Both Dr Mpoffu and I found this funny. Just to refresh the memory, Nathan is not allowed to eat until after he has his spinal treatment. This morning his appetite was back so the wait was a little uncomfortable. His spinal treatment was around 10:30am and he came out of it really good. Nurse Andrea, asked me if she had told me what Nathan had said the last time he had the spinal treatment and I said no. Apparently he sat up looked her square in the eye and without hesitation declared "I wasn't sleeping, I was just faking it." That was the day they had to give Nathan a little extra magic milk as it took longer than normal for him to fall asleep. That made her laugh the remainder of the day she said and obviously sits well in her memory.
Another little boy Carson was there today so they enjoyed sharing their snacks with each other. Someone else's always seems better than your own. Nathan had a good appetite today which was nice to see. He was tired when we got home and felt nauseous once but then felt better.
Wednesday will be another round of leg needles and Friday will be leg needles and fresh frozen plasma. We are making our way slowly but surely. We are thankful for the prayers and support that has helped us get this far.
Nathan was in a good mood going to the clinic. His lumbar treatment was to be at 9am but Dr Mpoffu was not yet back from Regina. Dr Ali headed there today so they traded off. When Dr Mpoffu was ready to examine Nathan, Nathan was all business. He climbed onto the examining table and politely told Dr Mpoffu he was ready. Dr Mpoffu had to ask the usual questions which Nathan didn't have much patience for. Nathan then proceeded to lighten the mood by asking Dr Mpoffu, "What's a kid to do around here to get some food?" Both Dr Mpoffu and I found this funny. Just to refresh the memory, Nathan is not allowed to eat until after he has his spinal treatment. This morning his appetite was back so the wait was a little uncomfortable. His spinal treatment was around 10:30am and he came out of it really good. Nurse Andrea, asked me if she had told me what Nathan had said the last time he had the spinal treatment and I said no. Apparently he sat up looked her square in the eye and without hesitation declared "I wasn't sleeping, I was just faking it." That was the day they had to give Nathan a little extra magic milk as it took longer than normal for him to fall asleep. That made her laugh the remainder of the day she said and obviously sits well in her memory.
Another little boy Carson was there today so they enjoyed sharing their snacks with each other. Someone else's always seems better than your own. Nathan had a good appetite today which was nice to see. He was tired when we got home and felt nauseous once but then felt better.
Wednesday will be another round of leg needles and Friday will be leg needles and fresh frozen plasma. We are making our way slowly but surely. We are thankful for the prayers and support that has helped us get this far.
Wednesday, July 15, 2009
ADI 62 & Holding
Nathan's white blood cells and neutrophils were not high enough, as expected, on Monday to start the next phase. Although we are anxious to get the treatment over with, a delay isn't necessarily a bad thing.
There are a lot more kids on our new street than on the last and our kids have been enjoying the outdoors (when it isn't raining that is)with them. So Monday afternoon gave them the opportunity to play. Tuesday afternoon Carter had a friend come and ask him to play so off they went. I soon had a phone call to work double checking if it was okay for Nathan to go and play as well which i said it was. When I arrived home, Grandma passed on Nathan's comment when Carter had left the house without him. It was something to the effect of "If Carter and Mya think I am still sick and they can play without me, they are mistaken". He was bound and determined to not be left out and had a fabulous time playing with the kids. Tonight the boys played hockey in the garage with a friend from down the street. This time it was Justin's turn to ensure he wasn't left out. He did awesome until he decided he didn't like his hockey stick and wanted Carter's instead. The only way to get him off the idea was to change sports so we played ball instead. Then the boys got out their quads and had a hoot chasing each other.
Nathan did ask tonight if we had to go to the clinic tomorrow but I told him he had another 4 days to play. He felt pretty good today but has complained more often than not of his stomach hurting which causes us concern. His diet has really been off since the last 4 weeks of treatment and although will try some meats still doesn't favour them. Tonight's snack request was a bowl of left over peas. I am thinking he will enjoy picking peas at Grandma's garden this year.
There are a lot more kids on our new street than on the last and our kids have been enjoying the outdoors (when it isn't raining that is)with them. So Monday afternoon gave them the opportunity to play. Tuesday afternoon Carter had a friend come and ask him to play so off they went. I soon had a phone call to work double checking if it was okay for Nathan to go and play as well which i said it was. When I arrived home, Grandma passed on Nathan's comment when Carter had left the house without him. It was something to the effect of "If Carter and Mya think I am still sick and they can play without me, they are mistaken". He was bound and determined to not be left out and had a fabulous time playing with the kids. Tonight the boys played hockey in the garage with a friend from down the street. This time it was Justin's turn to ensure he wasn't left out. He did awesome until he decided he didn't like his hockey stick and wanted Carter's instead. The only way to get him off the idea was to change sports so we played ball instead. Then the boys got out their quads and had a hoot chasing each other.
Nathan did ask tonight if we had to go to the clinic tomorrow but I told him he had another 4 days to play. He felt pretty good today but has complained more often than not of his stomach hurting which causes us concern. His diet has really been off since the last 4 weeks of treatment and although will try some meats still doesn't favour them. Tonight's snack request was a bowl of left over peas. I am thinking he will enjoy picking peas at Grandma's garden this year.
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