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.
Saturday, November 21, 2009
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.
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