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.
Thursday, October 29, 2009
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.
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