Well we are rapidly getting to the end of this phase. The way Nathan is looking and behaving I do not think that we will have any problem starting the next phase on Monday.
On Friday, after Nathan had a decent day and his cough did not get worse, we finally decided that we had to take Nathan and Justin out of the house as they were literally bumping into walls and each other. After Carter's music lesson we decided to take the family bowling and asked for the far outside lanes. We picked up cousins Johnathan and Ella, and Shelley's parents met us there. Justin was really excited to go bowling as all afternoon he kept going with the "me go bowling now!?" and when we got there he was still excited. He faithfully took his turns and usually waited for them though sometimes he just had to help Mommy out. The other kids bowled on their own lane and had it going fairly quickly. After the first game Nathan decided he had had enough and sat down to focus on his snacks while Carter and Johnathan kept their game moving fast by bowling for Nathan and sometimes Ella. I think everyone had fun and they were not ready to quit after an hour but it was time to go home.
It seems like every time we take Nathan out for some exercise that that night he will wake up with leg pains and last night was no different. Of course, we are just hoping that it is due to the inactivity Nathan had for a couple of months and then trying to get the legs going again causes some pain. Anyway, Shelley had to get the hot packs going for his legs in the middle of the night as once again, massaging the legs just weren't doing the trick. Finally, it seemed like just after we got Nathan sleeping again, Justin decided he wanted in on the action. He woke up about 6am but I got him to go back to bed (but not back to sleep). The action started again before 7am and both he and Nathan decided to be up for the day. Thankfully I have a lovely wife who got up with those munchkins while I slept in til just after 8am.
They had a pretty good day today as well. We have some budding artists that painted quite a few lovely pictures ... and then had to have a bath afterwards as the paint got everywhere. Later we all went to watch Carter's hockey game, or should I just say we went to the rink with Carter. Nathan watched a movie on a portable DVD player a friend brought. Justin climbed up and down the seats and Shelley and I chased after him. We did get to see quite a bit of Carter's hockey game and he did play well today. He even got his first penalty! It was for too many men on the ice but he was in the box all the same. After hockey we went to Shelley's parents for supper with the Grandparents and cousins. The boys had a great time after supper playing with Shelley's easy bake oven. Yup, all four boys (and one girl) spent a couple hours making cakes by a light bulb! Carter said it was the best cake he has ever made!
Hopefully Nathan spends the night in his bed tonight and does not decide that he needs to sleep with us. That is one action that we have to break before it becomes a full fledged habit.
Saturday, February 28, 2009
Thursday, February 26, 2009
IC Day 53
Nathan's cough got a little better today, it was more infrequent and wasn't as dry and hacking. That did not stop him from coming to bed in the middle of the night last night again, once again preventing his parents from getting a decent nights sleep. I think Nathan's platelets are working fine as he tested them today by turning and running smack into the edge of the kitchen door. It backed him up and sent him off howling but all he has to show for it, at least right now, is a small bump over his eye that is pretty blue and green.
Other than that it was a pretty uneventful day as Nathan and Justin never left the house again today (it was -29C). When is spring coming??
Other than that it was a pretty uneventful day as Nathan and Justin never left the house again today (it was -29C). When is spring coming??
Wednesday, February 25, 2009
IC Day 52
We had quite the night Tuesday. First Nathan shows up, still coughing, and cannot sleep so he jumps in bed with us. He thrashes around for a couple of hours and I finally leave the bed at 4am with Nathan on my side (yup, there was no room left for me). A short time later, Carter has a bad dream and off to Mom and Dad's bed he goes. Nathan has worked his way back to the middle and so Carter takes my vacated spot. Though Nathan's bed is a little short for me I think I got the better of the deal as Shelley told me that Nathan kept hitting her every time he rolled over. Subsequently, Nathan and Carter got some sleep but Shelley claims she did not. I got a little more after moving over to Nathan's bed. Man, I am glad that Justin can't get out of his room yet!
Nathan is getting a little bit of cabin fever, combined with not feeling spectacular due to his cough and interrupted sleep patterns. Carter is the only member of the family that gets regular outing and gets to interact with people who are not in our immediately family. Consequently, as soon as Carter gets home from school Nathan is all over him trying to get him to play something or do something with him. Carter generally needs a little unwind time but he hasn't been getting that the last couple of days as he becomes very popular since he's been outside the house!
Hopefully tonight will be a night for longer sleeps....
Nathan is getting a little bit of cabin fever, combined with not feeling spectacular due to his cough and interrupted sleep patterns. Carter is the only member of the family that gets regular outing and gets to interact with people who are not in our immediately family. Consequently, as soon as Carter gets home from school Nathan is all over him trying to get him to play something or do something with him. Carter generally needs a little unwind time but he hasn't been getting that the last couple of days as he becomes very popular since he's been outside the house!
Hopefully tonight will be a night for longer sleeps....
Tuesday, February 24, 2009
IC Day 51
It is kind of unnerving when your sick little boy catches something else just to make him a little more sick. Nathan's cough has gotten a little worse today, it's not horrible but by this evening it was really getting to him. We ended up phoning Dr Mpofu to see if there was anything else we needed to do, or what we could or could not give him and Dr Mpofu said treat it like we have any other time - if there is something that works for Nathan, do it. So we did and Nathan went to bed very easily tonight after a little cough syrup, Vicks on the chest and a little TLC from Mom and Dad.
As I said, this is a week of recuperating from this phase and trying to make sure that the counts are good enough for the next phase. All three boys had pretty good days but it was another housebound day for them. Hopefully they don't get too much cabin fever this week.
As I said, this is a week of recuperating from this phase and trying to make sure that the counts are good enough for the next phase. All three boys had pretty good days but it was another housebound day for them. Hopefully they don't get too much cabin fever this week.
Monday, February 23, 2009
IC Day 50
It is nice to have some days that go as expected. We went into the Cancer Center this morning about 9am and had blood work taken right away. Nathan then received his Vinchristine through IV and then all we had to do was wait for the blood work to come back. We thought it would be OK just from the way Nathan was acting and we were right. His WBC was up at 2.71 with his Neutrophils being 2.29 of that so that is low for the white blood cells but in the normal range for Neutrophils (his Lymphocytes were low which is what makes up that difference.) His RBC was close to normal at 3.21 with his Hemoglobin at 91. Nathan's platelets were also in the normal range at 161. It seems like the transfusion of red blood cells that Nathan received last Wednesday really seemed to stimulate the rest of his blood production. As long as Nathan's counts do not dip drastically, which is possible with the chemotherapy, we will be on course to start the next phase next Monday.
That phase is called the Augmented Interim Maintenance, the Augmented part is for High Risk Leukemia patients like Nathan whereas Standard Risk patients just get Interim Maintenance. Additionally, instead of the standard four weeks, the Augmented is eight weeks long and to top that off, he actually goes through this phase a second time after the next phase. To get it straight again we started with the Induction Phase and that got Nathan into remission and further sub classed his Leukemia into High Risk. We then had Intensified Consolidation which we are just finishing and next it goes:
Augmented Interim Maintenance (8 weeks)
Augmented Delayed Intensification (8 weeks)
2nd Augmented Interim Maintenance (8 weeks)
2nd Augmented Delayed Intensification (8 weeks)
Maintenance (3 years)
Maintenance is our next goal, we need to get there sometime within the next 36 weeks without having a relapse - once again, a relapse starts us right back at square 1 but with everything bumped up another notch.
This phase is supposed to be easier on Nathan's body but I'm not too sure how that is as it appears like we will be much busier than even this past phase. For instance, Nathan has Vinchristine (IV), Methotrexate (IV), Intrathecal Methotrexate (lumbar puncture) and Erwinia Asparginase all on Day 1. He then has Erwinia Asparginase on Days 3, 5, 8, 10 & 12. Additionally he has the Vinchristine and Methotrexate on Days 11 & 21 and at Day 21 it starts all over again. So that means we are in the Cancer Center Monday, Wednesday, Friday, Monday, Wednesday, Thursday and Friday every two week segment.
Whew, that got kind of technical but if you think that is bad just wait until I let you know what the Augmented Delayed Intensification is about, it has a couple of chemo drugs that we haven't even seen yet to date and he hits the steroids again.
Anyway, we also talked to Dr Ali about Nathan's cough and low grade fever and after examination he thinks it is just viral. He also said that he thought Nathan was in surprisingly good shape which was very nice to hear. Nathan also got to play with his Cancer buddy Michael for awhile in the playroom. Even after we were cleared to go and de-accessed Nathan had to stay and play for another 15 minutes. And since it seems like the Cancer Center is our only social (and only) outing Shelley and I were willing to stay and visit with the other parents for a bit.
Nathan had a pretty good afternoon and as long as his counts appear to stay up and his cough doesn't get worse then we may actually be able to venture out a little bit this week.
That phase is called the Augmented Interim Maintenance, the Augmented part is for High Risk Leukemia patients like Nathan whereas Standard Risk patients just get Interim Maintenance. Additionally, instead of the standard four weeks, the Augmented is eight weeks long and to top that off, he actually goes through this phase a second time after the next phase. To get it straight again we started with the Induction Phase and that got Nathan into remission and further sub classed his Leukemia into High Risk. We then had Intensified Consolidation which we are just finishing and next it goes:
Augmented Interim Maintenance (8 weeks)
Augmented Delayed Intensification (8 weeks)
2nd Augmented Interim Maintenance (8 weeks)
2nd Augmented Delayed Intensification (8 weeks)
Maintenance (3 years)
Maintenance is our next goal, we need to get there sometime within the next 36 weeks without having a relapse - once again, a relapse starts us right back at square 1 but with everything bumped up another notch.
This phase is supposed to be easier on Nathan's body but I'm not too sure how that is as it appears like we will be much busier than even this past phase. For instance, Nathan has Vinchristine (IV), Methotrexate (IV), Intrathecal Methotrexate (lumbar puncture) and Erwinia Asparginase all on Day 1. He then has Erwinia Asparginase on Days 3, 5, 8, 10 & 12. Additionally he has the Vinchristine and Methotrexate on Days 11 & 21 and at Day 21 it starts all over again. So that means we are in the Cancer Center Monday, Wednesday, Friday, Monday, Wednesday, Thursday and Friday every two week segment.
Whew, that got kind of technical but if you think that is bad just wait until I let you know what the Augmented Delayed Intensification is about, it has a couple of chemo drugs that we haven't even seen yet to date and he hits the steroids again.
Anyway, we also talked to Dr Ali about Nathan's cough and low grade fever and after examination he thinks it is just viral. He also said that he thought Nathan was in surprisingly good shape which was very nice to hear. Nathan also got to play with his Cancer buddy Michael for awhile in the playroom. Even after we were cleared to go and de-accessed Nathan had to stay and play for another 15 minutes. And since it seems like the Cancer Center is our only social (and only) outing Shelley and I were willing to stay and visit with the other parents for a bit.
Nathan had a pretty good afternoon and as long as his counts appear to stay up and his cough doesn't get worse then we may actually be able to venture out a little bit this week.
Sunday, February 22, 2009
IC Day 48 & 49
Another weekend done. The family had a pretty quiet weekend, Saturday afternoon/evening the Bells came over for a visit which we all enjoyed. We got another scare Saturday night when Nathan woke up saying that he was hot. Shelley took his temperature and it was 38.1, just under the magic number where we have to go to the hospital. She gave him some Tylenol and let him sleep in our bed and he had a good sleep. Of course, once that happens Shelley doesn't get much sleep being worried if we are going to have to go into the hospital once again.
The whole family slept in a bit on Sunday. Carter was actually the first one up which NEVER happens which shows how long everyone else slept. It makes sense though when they are up in the middle of the night. However, Nathan now has a cough as does Justin and to some extent Carter. Hopefully it doesn't develop into much more than that and that Shelley and I get to avoid it but if all three boys have it, I'm guessing we will get it before long. We are just praying that Nathan doesn't have to be hospitalized again as that is no fun for anyone in our family.
Tomorrow is the last treatment for the Intensified Consolidation phase. Nathan gets Vinchristine by IV and they will do blood work and so it should be a relatively short day. Nathan then gets the rest of the week off to recuperate before starting the next phase next Monday. As usual, that phase will not start unless Nathan's platelets are at 75 and Neutraphils are at least .75.
The whole family slept in a bit on Sunday. Carter was actually the first one up which NEVER happens which shows how long everyone else slept. It makes sense though when they are up in the middle of the night. However, Nathan now has a cough as does Justin and to some extent Carter. Hopefully it doesn't develop into much more than that and that Shelley and I get to avoid it but if all three boys have it, I'm guessing we will get it before long. We are just praying that Nathan doesn't have to be hospitalized again as that is no fun for anyone in our family.
Tomorrow is the last treatment for the Intensified Consolidation phase. Nathan gets Vinchristine by IV and they will do blood work and so it should be a relatively short day. Nathan then gets the rest of the week off to recuperate before starting the next phase next Monday. As usual, that phase will not start unless Nathan's platelets are at 75 and Neutraphils are at least .75.
Friday, February 20, 2009
IC Day 46 & 47
Nathan had a pretty good night on Wednesday night but his father had a little trouble sleeping in the hospital. Nathan was hooked up to a couple of machines because he was in there due to an allergic reaction. They were monitoring his heart rate, his lung rate, dissolved oxygen and pulse (why they do heart rate and pulse I don't know, I thought they would be the same); and then there was the usual IV machine. His oxygen monitor continuously set off the alarm even though Nathan was sleeping and was laying perfectly still. The alarm would go off, I'd get up and silence it and get the nurse. After the sixth time in a couple of hours I finally insisted that we either take that monitor off altogether or at least replace it and so they put a second monitor on a different finger without removing the first. Thankfully Nathan slept through all that. Not too long later the IV alarm went off indicating the IV was finished and so I went to silence that one as well but I hit the wrong button and turned it off - oops. I turned it back on and it asked if I wanted to reset.... and I went to find a nurse. Not sure where they all were in the middle of the night but there was no one to be found. I wandered around for about 10 minutes before I talked to a nurse from a different station and explained what I did. She came over and fixed it but was also confused by the settings and off she went to find our nurse as well. She came back a few minutes later and got it all set up again. Then at 5am they were in to give Nathan another Benadryl and Hydrocortisone shot and then shortly after 7am Nathan was up for the day and I was one tired puppy.
Nathan had a pretty good morning in the hospital and ate lots for breakfast. We were released at noon and that's when the hospital behaviour started again. Shelley and I are not fans of that behaviour because it really tests our patience and when I'm that tired, patience is not something I have a lot of. We eventually got home but it was a fairly tense and spirited ride. Thankfully, my sisters were at our house and Nathan went off to play with them while Shelley and I had a few moments to reset ourselves. The rest of Thursday went fairly well and even bedtime was relatively easy.
All the boys slept well Thursday night, but as usual Nathan was the first one up on Friday. The boys had a fairly easy day today, they didn't get outside as it was a little cold here and spent quite a bit of time on the Wii today. After dinner they were working on getting some Wii time for the afternoon so Nathan had to do an activity book. It was really great to see as Carter offered to help him and did a wonderful job of letting Nathan figure out which letters he needed to make. Carter would then remind him how to make that letter and give him a starting point and Nathan would make it. They did this very well for almost an hour and it was great to see. It's amazing what they can do when united for a good cause - like playing the Wii. Carter had music lessons, we did some family Wii after supper and then we played a game of monopoly before bed. Nathan was in very good spirits and he had a little colour back in his cheeks after being ghostly white all week. The boys all went to bed without much trouble this evening.
Hopefully we have a good weekend and then Nathan gets his last treatment for this Intensified Consolidation phase on Monday. He then gets the rest of the week off to make sure his counts are ready for the next phase which is called Augmented Interim Maintenance (AIM). Shelley got a new roadmap from the Cancer Center today since the one we had received on Monday was now no good. As we guessed, they will be replacing the PEG-Asparginase withe Erwinia L-Asparginase. The latter is supposed to have fewer allergic reactions to it however the downside is that it requires far more treatments. So instead of getting the PEG twice over 6 weeks, Nathan will receive the Erwinia L-Asparginase twelve times over the 6 weeks. Each treatment consists of two needles to his thighs and we wonder how that will go over. Nathan ended up with a large bruise to his left thigh from the one needle this past Monday so getting needles every two days may end up rather trying.
We realize that the Unexpected will continue to happen but as long as the treatments continue to progress and be successful, in that Nathan continues to remain in remission, well, that is all we are really praying for and we will handle the unexpected as best we can.
Nathan had a pretty good morning in the hospital and ate lots for breakfast. We were released at noon and that's when the hospital behaviour started again. Shelley and I are not fans of that behaviour because it really tests our patience and when I'm that tired, patience is not something I have a lot of. We eventually got home but it was a fairly tense and spirited ride. Thankfully, my sisters were at our house and Nathan went off to play with them while Shelley and I had a few moments to reset ourselves. The rest of Thursday went fairly well and even bedtime was relatively easy.
All the boys slept well Thursday night, but as usual Nathan was the first one up on Friday. The boys had a fairly easy day today, they didn't get outside as it was a little cold here and spent quite a bit of time on the Wii today. After dinner they were working on getting some Wii time for the afternoon so Nathan had to do an activity book. It was really great to see as Carter offered to help him and did a wonderful job of letting Nathan figure out which letters he needed to make. Carter would then remind him how to make that letter and give him a starting point and Nathan would make it. They did this very well for almost an hour and it was great to see. It's amazing what they can do when united for a good cause - like playing the Wii. Carter had music lessons, we did some family Wii after supper and then we played a game of monopoly before bed. Nathan was in very good spirits and he had a little colour back in his cheeks after being ghostly white all week. The boys all went to bed without much trouble this evening.
Hopefully we have a good weekend and then Nathan gets his last treatment for this Intensified Consolidation phase on Monday. He then gets the rest of the week off to make sure his counts are ready for the next phase which is called Augmented Interim Maintenance (AIM). Shelley got a new roadmap from the Cancer Center today since the one we had received on Monday was now no good. As we guessed, they will be replacing the PEG-Asparginase withe Erwinia L-Asparginase. The latter is supposed to have fewer allergic reactions to it however the downside is that it requires far more treatments. So instead of getting the PEG twice over 6 weeks, Nathan will receive the Erwinia L-Asparginase twelve times over the 6 weeks. Each treatment consists of two needles to his thighs and we wonder how that will go over. Nathan ended up with a large bruise to his left thigh from the one needle this past Monday so getting needles every two days may end up rather trying.
We realize that the Unexpected will continue to happen but as long as the treatments continue to progress and be successful, in that Nathan continues to remain in remission, well, that is all we are really praying for and we will handle the unexpected as best we can.
Wednesday, February 18, 2009
IC Day 45 Update
Nathan had a decent night, up a few times to go to the washroom due to the IV he was hooked up to. He showed no further signs of allergic reaction to the PEG until this morning at breakfast. As he was eating his cereal he decided to have orange juice and it was pretty much instantaneous, the reddening around the mouth and chin, blotches on the nose and one blotch above the eyebrow. I went to tell the nurse and as soon as I got back I asked Nathan to open up his shirt and this time he had hives. So the next dose of Benedyrall was given and this time only 30 mins until all symptoms were gone.
He had a quiet day as his hemoglobin had dropped from yesterday down to 55 so had a red cell transfusion. Nathan's platelets were also down but no transfusion of these as of yet. Since it takes roughly 4 hours for the red cells to drip through, his day was spent watching movies, playing cards and games and doing puzzles.
In assessing why Nathan is reacting to the PEG this time around, his reaction only seems to happen when having a fruit. In prior months Nathan stopped eating fruits, especially anything acidic. Since the last PEG treatment in January, he has re-introduced orange juice, strawberries, watermelon, cantaloupe and blue berries. Yesterday he had watermelon about half an hour before his reaction. This morning it was while drinking orange juice. He had no reaction at lunch time but didn't have any fruits. At supper time he was having fish and wanted lemon on it. Before we could say anything the lemon was being sucked on and almost instantly he had the reddening around the month, pimply pumps on his forehead and red patches on his chest and stomach. Needless to say, we won't be letting him have any more fruits until we know the PEG is out of his system. The Benedyrall only took about 15 mins for the symptoms to subside so much faster this time.
We aren't sure if Nathan will need to stay tomorrow night and probably depends on whether he has any more reactions between tonight and noon tomorrow. Aside from the reaction to the PEG, Nathan is doing well.
Shelley
He had a quiet day as his hemoglobin had dropped from yesterday down to 55 so had a red cell transfusion. Nathan's platelets were also down but no transfusion of these as of yet. Since it takes roughly 4 hours for the red cells to drip through, his day was spent watching movies, playing cards and games and doing puzzles.
In assessing why Nathan is reacting to the PEG this time around, his reaction only seems to happen when having a fruit. In prior months Nathan stopped eating fruits, especially anything acidic. Since the last PEG treatment in January, he has re-introduced orange juice, strawberries, watermelon, cantaloupe and blue berries. Yesterday he had watermelon about half an hour before his reaction. This morning it was while drinking orange juice. He had no reaction at lunch time but didn't have any fruits. At supper time he was having fish and wanted lemon on it. Before we could say anything the lemon was being sucked on and almost instantly he had the reddening around the month, pimply pumps on his forehead and red patches on his chest and stomach. Needless to say, we won't be letting him have any more fruits until we know the PEG is out of his system. The Benedyrall only took about 15 mins for the symptoms to subside so much faster this time.
We aren't sure if Nathan will need to stay tomorrow night and probably depends on whether he has any more reactions between tonight and noon tomorrow. Aside from the reaction to the PEG, Nathan is doing well.
Shelley
Tuesday, February 17, 2009
IC Day 44
ETU! Today was an example of how just when we think things are going smoothly something has to happen to change that. Nathan had a difficult night Monday night, he woke up at about 2am complaining of leg pains and was crying from the pain. This was not his typical muscle cramp and so we could not massage it better. After an hour or so of discomfort we finally gave Nathan Tylenol which made him feel better and let him get to sleep. Maybe Shelley and I should have taken something as well as neither of us got much sleep after that.
We got up in the morning and I had to put Emla cream on Nathan's port as well as his thighs. As soon as we do that then he knows that he is in for needles that day and starts worrying about how much it is going to hurt. We try to allay his fears and I think he lets us, I don't think we convince him but he lets us feel better so we stop talking. We arrived at the Cancer Center at about 9am and they were a little backed up. Nathan's friend Michael was there but Nathan did not really get a chance to play with him; Michael was in for his treatment and when he came out we went in, and shortly after we got out Michael was able to go home. We were not that lucky.
They accessed his port shortly and did blood work on Nathan and then we had to wait for his chemotherapy drugs, evidently the pharmacy was backed up today. We talked with Dr Ali extensively about Nathan's bruising, his inability to sit still any more and about the leg pains from the night before. The bruising is likely caused by low platelets but Dr Ali is at a loss to explain away any of them and went so far as to say that the leg pain is worrisome. He did agree that they were all likely related to his chemotherapy. That was not what we wanted to hear but of course, we agree! It was a bit of an strange talk this morning with him but I think he is starting to see our points of view as a little more than just a couple of neurotic parents.
After a couple of hours in the playroom we finally asked where his chemo drugs were as the Emla cream is only good for four hours and Nathan had had it on for over three and half hours already. Finally at about 11:30am his drugs were ready and he got his Vinchristine via IV and then he had to have the PEG-Asparginase injected by needles into his thighs. Nathan did very well with that today; he was a little nervous but he held his new Pokemon pillow buddy, Chimcharr, and closed his eyes. Nathan counted to three and the nurses poked and injected and Nathan did not cry or anything. This was getting easier (foreshadowing). They de-accessed Nathan and we had to wait at the Center for another half hour for observation and then we were free to go.
On the way home, Nathan complained that his privates were hurting. Then he complained that his lips were tingly. Shelley looked back and his lips had started to swell. We got home, took Nathan to the washroom and checked him out thoroughly. His lips continued to get more swollen so I phoned Dr Ali while Shelley tried to comfort Nathan and Dr Ali asked us to come right back in as Nathan was having an allergic reaction. We weren't in the house for 5 minutes before we were packing back up to head back to the Cancer Center. Once we got there they got us into a room at the clinic right away and gave Nathan Benadryl and Hydrocortisone by IV. Evidently IV works way faster than oral which is why we were not to give him Benadryl at home and to wait until we got to the clinic. The concern is that with the lips swelling that his neck would also swell limiting his ability to breathe. Thankfully that did not happen but Nathan was still very uncomfortable and crying while they had to re-access his port (without the assistance of Emla) and get the IV going. Dr Ali classified it as a stage 2 allergic reaction as it wasn't very drastic but did have more symptoms than what stage one would have (there are 3 stages with stage three being the worst).
To be on the safe side Dr Ali admitted Nathan to hospital on Tuesday so that he could be placed under observation for 24 hours. The main contributing factor to this decision is that the PEG is a slow release drug and that Nathan may have another allergic reaction to future "releases" of the PEG-Asparginase. Of course admitting is always easier said than done. The pediatric ward of RUH is quite busy today and they were having trouble getting Nathan an isolated observation bed. Finally, shortly after 5pm, they were able to find a room for Nathan - he is in 3013. Again, I cannot say enough about the staff at the Cancer Center as Cathy let us stay in the Cancer Center until the room was ready even though it closed at 4:30pm. This was officially our longest day at the Cancer Center, from 9am to almost 5:30pm for an eight and a half hour day there.
Dr Ali is assuming that this was an allergic reaction to the PEG-Asparginase as that is one of the common side effects of this drug. The other strange thing is this is the third time that he has had this drug but the first time he has reacted to it. Now that Dr Ali classed this as a stage 2 allergic reaction Nathan will never get that drug again in any of his future treatments. This of course means that something has to done to take its place. We had received the next phase protocol today and it contained 2 more PEG injections (2 needles each time). What will likely take its place is a drug called l-asparginase. Same drug just not in the PEG slow release format. The issue with this is that instead of one injection (of two needles) into his thighs it will be 6-9 injections (of two needles) into his thighs over the course of a week. Nathan will get tired of those needles fast and his parents will definitely get tired of seeing the pain it causes in their little boy.
So we are in the hospital for a minimum of 24 hours under observation. This means that Nathan has heart, lung, oxygen and pulse (different than heart?) monitors all hooked up to him tonight and they stay hooked up. He is also getting fluids by IV and will likely get potassium via IV later tonight. Nathan's blood counts were all very low today: his WBC was .85, with his Neutrophils at .27; his Hemoglobin was at 68 and his platelets were down to 39. He will get more blood work in the morning and he may require both red blood and platelet transfusions tomorrow. If that is the case we likely wouldn't be leaving the hospital until later in the day. Our best case scenario is that we would be release at noon Wednesday. Our worst case scenario... well let's just say that it is not being released at noon tomorrow and leave it at that.
As I started with, ETU - expect the unexpected. Please continue to pray for our Nathan and for his family.
-Arron
We got up in the morning and I had to put Emla cream on Nathan's port as well as his thighs. As soon as we do that then he knows that he is in for needles that day and starts worrying about how much it is going to hurt. We try to allay his fears and I think he lets us, I don't think we convince him but he lets us feel better so we stop talking. We arrived at the Cancer Center at about 9am and they were a little backed up. Nathan's friend Michael was there but Nathan did not really get a chance to play with him; Michael was in for his treatment and when he came out we went in, and shortly after we got out Michael was able to go home. We were not that lucky.
They accessed his port shortly and did blood work on Nathan and then we had to wait for his chemotherapy drugs, evidently the pharmacy was backed up today. We talked with Dr Ali extensively about Nathan's bruising, his inability to sit still any more and about the leg pains from the night before. The bruising is likely caused by low platelets but Dr Ali is at a loss to explain away any of them and went so far as to say that the leg pain is worrisome. He did agree that they were all likely related to his chemotherapy. That was not what we wanted to hear but of course, we agree! It was a bit of an strange talk this morning with him but I think he is starting to see our points of view as a little more than just a couple of neurotic parents.
After a couple of hours in the playroom we finally asked where his chemo drugs were as the Emla cream is only good for four hours and Nathan had had it on for over three and half hours already. Finally at about 11:30am his drugs were ready and he got his Vinchristine via IV and then he had to have the PEG-Asparginase injected by needles into his thighs. Nathan did very well with that today; he was a little nervous but he held his new Pokemon pillow buddy, Chimcharr, and closed his eyes. Nathan counted to three and the nurses poked and injected and Nathan did not cry or anything. This was getting easier (foreshadowing). They de-accessed Nathan and we had to wait at the Center for another half hour for observation and then we were free to go.
On the way home, Nathan complained that his privates were hurting. Then he complained that his lips were tingly. Shelley looked back and his lips had started to swell. We got home, took Nathan to the washroom and checked him out thoroughly. His lips continued to get more swollen so I phoned Dr Ali while Shelley tried to comfort Nathan and Dr Ali asked us to come right back in as Nathan was having an allergic reaction. We weren't in the house for 5 minutes before we were packing back up to head back to the Cancer Center. Once we got there they got us into a room at the clinic right away and gave Nathan Benadryl and Hydrocortisone by IV. Evidently IV works way faster than oral which is why we were not to give him Benadryl at home and to wait until we got to the clinic. The concern is that with the lips swelling that his neck would also swell limiting his ability to breathe. Thankfully that did not happen but Nathan was still very uncomfortable and crying while they had to re-access his port (without the assistance of Emla) and get the IV going. Dr Ali classified it as a stage 2 allergic reaction as it wasn't very drastic but did have more symptoms than what stage one would have (there are 3 stages with stage three being the worst).
To be on the safe side Dr Ali admitted Nathan to hospital on Tuesday so that he could be placed under observation for 24 hours. The main contributing factor to this decision is that the PEG is a slow release drug and that Nathan may have another allergic reaction to future "releases" of the PEG-Asparginase. Of course admitting is always easier said than done. The pediatric ward of RUH is quite busy today and they were having trouble getting Nathan an isolated observation bed. Finally, shortly after 5pm, they were able to find a room for Nathan - he is in 3013. Again, I cannot say enough about the staff at the Cancer Center as Cathy let us stay in the Cancer Center until the room was ready even though it closed at 4:30pm. This was officially our longest day at the Cancer Center, from 9am to almost 5:30pm for an eight and a half hour day there.
Dr Ali is assuming that this was an allergic reaction to the PEG-Asparginase as that is one of the common side effects of this drug. The other strange thing is this is the third time that he has had this drug but the first time he has reacted to it. Now that Dr Ali classed this as a stage 2 allergic reaction Nathan will never get that drug again in any of his future treatments. This of course means that something has to done to take its place. We had received the next phase protocol today and it contained 2 more PEG injections (2 needles each time). What will likely take its place is a drug called l-asparginase. Same drug just not in the PEG slow release format. The issue with this is that instead of one injection (of two needles) into his thighs it will be 6-9 injections (of two needles) into his thighs over the course of a week. Nathan will get tired of those needles fast and his parents will definitely get tired of seeing the pain it causes in their little boy.
So we are in the hospital for a minimum of 24 hours under observation. This means that Nathan has heart, lung, oxygen and pulse (different than heart?) monitors all hooked up to him tonight and they stay hooked up. He is also getting fluids by IV and will likely get potassium via IV later tonight. Nathan's blood counts were all very low today: his WBC was .85, with his Neutrophils at .27; his Hemoglobin was at 68 and his platelets were down to 39. He will get more blood work in the morning and he may require both red blood and platelet transfusions tomorrow. If that is the case we likely wouldn't be leaving the hospital until later in the day. Our best case scenario is that we would be release at noon Wednesday. Our worst case scenario... well let's just say that it is not being released at noon tomorrow and leave it at that.
As I started with, ETU - expect the unexpected. Please continue to pray for our Nathan and for his family.
-Arron
Monday, February 16, 2009
IC Day 43
We had a pretty good day today. Nathan was in good spirits again... Just mulling things over and I really believe that the week we had off when Nathan's counts were too low for treatments was a definite benefit in disguise. Even though it delayed Nathan's treatments for a week it really seemed to get Nathan back to being Nathan. These last two weeks since then have gone relatively smoothly and Nathan's behaviour has mostly been his typical behaviour. Of course there are some differences, but at least those are ones we expect and can understand. Nathan does get tired a little more easily but at times you really don't notice. Additionally, Nathan has really started to bruise easily. That is not typical Nathan as he rarely bruised even when he had a hard bump however now his legs have quite a few bruises and also a couple on the arms. Our understanding is that this is due to his platelet counts being low along with his other blood counts.
Nathan has finished this two week part of this phase by taking his last Mercaptopurine tablet tonight. These past two weeks consisted of Cyclolphosphamide (first day), ARAC (8 days) and Mercaptopurine (14 days). I'm guessing tomorrow is going to be a more difficult day. Nathan will get a blood test and then start Vinchristine by IV and then the really painful one he gets is PEG-Asparginase by needles. The last time he received the PEG it was nice that he also had a lumbar puncture that day and so he was under anaesthetic when he got it. Tomorrow he will be fully awake and, if the past is any indicator, he will be quite resistant to the idea of two big needles to his thighs. Hopefully his blood counts will be high enough that he does not require any transfusions but that will be a possibility tomorrow. Nathan has no treatments for the rest of the week as his body will need that time to try to recover a bit before more treatments next Monday.
We continue to appreciate all of the prayers and thank you for your continued prayers and well wishes. It is tremendously helpful as we ALL need them. One last thing, I have re-incarnated my links page. For those that keep asking about how to get to the rest of the blog you can do it from there.
Nathan has finished this two week part of this phase by taking his last Mercaptopurine tablet tonight. These past two weeks consisted of Cyclolphosphamide (first day), ARAC (8 days) and Mercaptopurine (14 days). I'm guessing tomorrow is going to be a more difficult day. Nathan will get a blood test and then start Vinchristine by IV and then the really painful one he gets is PEG-Asparginase by needles. The last time he received the PEG it was nice that he also had a lumbar puncture that day and so he was under anaesthetic when he got it. Tomorrow he will be fully awake and, if the past is any indicator, he will be quite resistant to the idea of two big needles to his thighs. Hopefully his blood counts will be high enough that he does not require any transfusions but that will be a possibility tomorrow. Nathan has no treatments for the rest of the week as his body will need that time to try to recover a bit before more treatments next Monday.
We continue to appreciate all of the prayers and thank you for your continued prayers and well wishes. It is tremendously helpful as we ALL need them. One last thing, I have re-incarnated my links page. For those that keep asking about how to get to the rest of the blog you can do it from there.
Sunday, February 15, 2009
IC Day 41 & 42
We are doing updates a couple days at a time right now because, believe it or not, we've been busy! Not busy with Nathan's treatments but with stuff happening. Brother Perry and niece Tessa made a quick trip to Saskatoon and spent most of the day with us on Saturday. It was real nice visiting with them and great seeing Tessa as we missed her at Christmas time when the rest of her family came up. Nathan had a pretty good day with him but you could definitely tell when he would get a little rundown. He'd be full of energy for significant stretches and then kind of burn out for a few hours but he always managed to get back up to speed again.
Today we did a little of this and a little of that. We were outside for awhile and then took all the boys shopping so they could buy Pokemon pillow buddies. Nathan had to wear a mask into the stores that he gets irritated with and complains about but he does very well to keep it on - he knows it is important. Then this evening we went to Shelley's parents to help celebrate Auntie Lorrie's birthday. They were all quite tired coming home but it always seems like they wind up once it is bedtime, they get that third or fourth wind. That said, the all went to sleep very easily tonight.
-Arron
Today we did a little of this and a little of that. We were outside for awhile and then took all the boys shopping so they could buy Pokemon pillow buddies. Nathan had to wear a mask into the stores that he gets irritated with and complains about but he does very well to keep it on - he knows it is important. Then this evening we went to Shelley's parents to help celebrate Auntie Lorrie's birthday. They were all quite tired coming home but it always seems like they wind up once it is bedtime, they get that third or fourth wind. That said, the all went to sleep very easily tonight.
-Arron
Saturday, February 14, 2009
IC Day 39 & 40 Update Feb 12 and 13th
Nathan had his last ARAC administration Thursday morning at the clinic and was happy to be de-accessed. Justin and Nathan passed the day helping me make Valentine cookies. They certainly enjoyed the dough and icing resulting in both having to take a bath! Carter had a friend over after school and Nathan played boot hockey with them for a little bit.
The kids were excited to have friends come and stay with us from Calgary. They are all relatively the same age and had a wonderful day on Friday. The evening was a loud one for Arron as he went with a couple other Dad's and their sons to the Monster Trucks while I had a quiet evening watching Air Bud with Justin and Nathan.
Nathan is doing well. Two more weeks of this phase and then we will see what is to come.
-Shelley
The kids were excited to have friends come and stay with us from Calgary. They are all relatively the same age and had a wonderful day on Friday. The evening was a loud one for Arron as he went with a couple other Dad's and their sons to the Monster Trucks while I had a quiet evening watching Air Bud with Justin and Nathan.
Nathan is doing well. Two more weeks of this phase and then we will see what is to come.
-Shelley
Wednesday, February 11, 2009
IC Day 38 Update
Another day done, another day closer to....... the end just doesn't seem to get any closer. Nathan had a good sleep Tuesday night for the first time in a few nights and he had a nice quick trip through the Cancer Center. The rest of our day was spent on homework, activity books and playing the Wii. A nice easy day.
Tuesday, February 10, 2009
IC Day 37 Update
Nathan woke up again Monday night complaining of leg pain. This time he ended up in our bed and I ended up in his bed - that is two nights in a row of musical bedrooms, hopefully that chain stops tonight.
We had a quick trip into the Cancer Center today. Nathan sometimes does not like those because it doesn't give him enough time to play. We got there, they accessed his port right away, gave him his ARAC and we were free to go. Hopefully tomorrow will be just as quick.
Nathan, Shelley and Justin spent the afternoon at the Berg's playing with buddies Matt and Will and they had lots of fun. Hopefully Todd has as much fun trying to fix the hole Matt and Nathan put in the wall. Quick update today - that's all.
We had a quick trip into the Cancer Center today. Nathan sometimes does not like those because it doesn't give him enough time to play. We got there, they accessed his port right away, gave him his ARAC and we were free to go. Hopefully tomorrow will be just as quick.
Nathan, Shelley and Justin spent the afternoon at the Berg's playing with buddies Matt and Will and they had lots of fun. Hopefully Todd has as much fun trying to fix the hole Matt and Nathan put in the wall. Quick update today - that's all.
Monday, February 9, 2009
IC Day 36 Update
Mondays at the Cancer Center are quite busy. It is very strange that they do not spread it out throughout the week more as today it was almost standing room only. The adult area was completely full and there were 5 or 6 pediatric patients as well. On days like that you understand why things can take so long. Nathan's treatment today was about 30 minutes but we were there for over another 2 hours waiting for blood test results. His blood counts have all started taking a big drop from the chemotherapy treatment last week. His WBC is down to 1.35 with his Neutrophils down to .87. His Hemoglobin is down slightly at 76 but it really hasn't varied a whole bunch. The platelets have yo-yo'd back down to 282 from the over 600 a week ago. The nice thing is that treatments this week and the next two weeks are not dependent on his counts. We will be proceeding with treatments regardless.
Once we got home we had a very strange occurrence. Nathan was doing his typical back and forth from the table during dinner that frustrates his parents. On one trip back to the table he somehow caught his port needle on the edge of the table and ended up pulling it almost all the way out of his port. Needless to say that caught Nathan's attention and there was a fair bit of crying and yelling and some confused parents until we figured out what happened. I had to then try to take the tape off and fully de-access him all while he's screaming in pain. We phoned the Cancer Center and they said that being de-accessed was fine but we will have to get re-accessed tomorrow. Hopefully that gets Nathan to slow it down a bit but I doubt it.
We had a good afternoon and evening with the boys. Carter had a hockey game after school and Shelley had a good supper waiting when we got home. Shelley, Carter and Nathan played outside this evening while Justin and I hung out at home and gave him a bath. At one point Justin was coughing a bit in the tub so I went into the bathroom to see what was up. He told me that the bathwater was yucky so it was pretty easy to figure out what he was doing.
Last night was a little bit of a hard night. Nathan was up at 4:30 with leg cramps and was determined that he was going to be up for the day. It took some time by Shelley and then some time with me but I finally got Nathan back to sleep... at 7:30! We then had to wake him up at 8am in order to get ready to go to the Cancer Center after dropping Carter off at school. Additionally, we had to be out of the house this afternoon so Justin got to skip his nap today and Nathan didn't get any rest. Thankfully everyone went to bed fairly easy this evening as we had a bunch of tired boys. My turn.
Once we got home we had a very strange occurrence. Nathan was doing his typical back and forth from the table during dinner that frustrates his parents. On one trip back to the table he somehow caught his port needle on the edge of the table and ended up pulling it almost all the way out of his port. Needless to say that caught Nathan's attention and there was a fair bit of crying and yelling and some confused parents until we figured out what happened. I had to then try to take the tape off and fully de-access him all while he's screaming in pain. We phoned the Cancer Center and they said that being de-accessed was fine but we will have to get re-accessed tomorrow. Hopefully that gets Nathan to slow it down a bit but I doubt it.
We had a good afternoon and evening with the boys. Carter had a hockey game after school and Shelley had a good supper waiting when we got home. Shelley, Carter and Nathan played outside this evening while Justin and I hung out at home and gave him a bath. At one point Justin was coughing a bit in the tub so I went into the bathroom to see what was up. He told me that the bathwater was yucky so it was pretty easy to figure out what he was doing.
Last night was a little bit of a hard night. Nathan was up at 4:30 with leg cramps and was determined that he was going to be up for the day. It took some time by Shelley and then some time with me but I finally got Nathan back to sleep... at 7:30! We then had to wake him up at 8am in order to get ready to go to the Cancer Center after dropping Carter off at school. Additionally, we had to be out of the house this afternoon so Justin got to skip his nap today and Nathan didn't get any rest. Thankfully everyone went to bed fairly easy this evening as we had a bunch of tired boys. My turn.
Sunday, February 8, 2009
IC Day 35 Update
Tomorrow is Day 36 and that means Nathan gets ARAC for four days straight again. By the end of the week his counts might be getting low but we hope they can last til the weekend. Even though we are at the Cancer Center every day this week hopefully the visits can be fairly quick. It is Monday tomorrow so Nathan's buddy Michael will also be there and Nathan will want to visit for a bit.
All the kids had a good day today, I think. The morning started off slow with the kids just banging around the house but we had visitors come in the afternoon. Rodney, Julianne and Michelle came to visit just as we were finishing dinner and we visited with them. Shortly after they got there we all went outside as it was such a beautiful day. We played boot hockey on the rink for awhile until Carter's friends Nicholas and Lydia arrived. That meant Nathan, Carter and his friends disappeared downstairs to play Pokemon on the DS together so the adults went for a walk around the neighbourhood while cousin Michelle kept watch of the kids. It was such a nice day that we decided to have a wiener roast outside. The kids all came out to cook their own hot dogs but then they all got playing hockey and Rodney and I ended up cooking them all - not that we minded at all. They ate outside and played some more and had lots of fun. After Lydia and Nicholas left Carter and Nathan came back inside but Justin refused - he was staying outside. Shelley stayed outside until I relieved her. Justin played hockey and slid on our snow pile and just as we were to come in Carter decided he wanted to come back out. We played together for awhile and Carter and I had to have a game of boot hockey - he is quite good. Dad finally got cold and called it quits about 7:30 and Justin was OK with finally going in but Carter really wanted to stay out longer. Nathan was happy to have everyone back inside and proceeded to make sure we had something to eat and drink. Very happy boy today with all of his activity. However, Shelley and I can tell that he is starting to get a little more pale which means that his hemoglobin counts (not platelets) are getting low so this week may end up being a little more challenging. We are thankful to have been able to enjoy the beautiful weather together.
All the kids had a good day today, I think. The morning started off slow with the kids just banging around the house but we had visitors come in the afternoon. Rodney, Julianne and Michelle came to visit just as we were finishing dinner and we visited with them. Shortly after they got there we all went outside as it was such a beautiful day. We played boot hockey on the rink for awhile until Carter's friends Nicholas and Lydia arrived. That meant Nathan, Carter and his friends disappeared downstairs to play Pokemon on the DS together so the adults went for a walk around the neighbourhood while cousin Michelle kept watch of the kids. It was such a nice day that we decided to have a wiener roast outside. The kids all came out to cook their own hot dogs but then they all got playing hockey and Rodney and I ended up cooking them all - not that we minded at all. They ate outside and played some more and had lots of fun. After Lydia and Nicholas left Carter and Nathan came back inside but Justin refused - he was staying outside. Shelley stayed outside until I relieved her. Justin played hockey and slid on our snow pile and just as we were to come in Carter decided he wanted to come back out. We played together for awhile and Carter and I had to have a game of boot hockey - he is quite good. Dad finally got cold and called it quits about 7:30 and Justin was OK with finally going in but Carter really wanted to stay out longer. Nathan was happy to have everyone back inside and proceeded to make sure we had something to eat and drink. Very happy boy today with all of his activity. However, Shelley and I can tell that he is starting to get a little more pale which means that his hemoglobin counts (not platelets) are getting low so this week may end up being a little more challenging. We are thankful to have been able to enjoy the beautiful weather together.
Saturday, February 7, 2009
IC Day 34 Update
You know you have had a good day when your kids go to bed saying it was the best day ever. What a wonderful day. All 3 kids were outside by 9:30am to shovel the skiff of snow off the rink and then helped Dad shovel the walks. We ventured off to Market Mall for a game of mini-golf and all did well. We were home for lunch and the boys had a little Wii time before heading to the bowling alley. We were there in time for glow bowling and were joined by Uncle Darrell, Johnathan, Ella, Auntie Lorrie and Chris. The kids had a lot of fun. Justin quite enjoyed it too. You could tell him it wasn't his turn and he would look over his shoulder to see if you were watching and throw anyway. (Tonight at bedtime he kept asking to go bowling again and for the shoes. I guess he liked them.) Thinking this would tucker out the kids (not), they continued their fun on the rink when we got home with Justin of course, to be the last one in. Cousin Nic, Auntie Wendy and Uncle Lyle stopped in for a visit and had a wonderful evening. Needless to say, it was pretty easy getting the boys to bed tonight.
Nathan did extremely well today and Arron and I are amazed at his energy level. I am thinking his plateletts are dropping though as he was paler today than yesterday. Arron is gone to a James Bond movie so I will end this as I have some me time to watch Private Practise. Tomorrow isn't planned to be as action packed as today but one never knows. Again we are thankful for family and friends being healthy so that we can enjoy time together.
- Shelley
Nathan did extremely well today and Arron and I are amazed at his energy level. I am thinking his plateletts are dropping though as he was paler today than yesterday. Arron is gone to a James Bond movie so I will end this as I have some me time to watch Private Practise. Tomorrow isn't planned to be as action packed as today but one never knows. Again we are thankful for family and friends being healthy so that we can enjoy time together.
- Shelley
Friday, February 6, 2009
IC Day 33 Update
Today was another good day for Nathan and for our family. Shelley and Auntie Julianne took Justin and Nathan shopping this morning and the boys did good. Shelley was nervous taking Nathan out into public, but she did and he did well. I think he liked being out of the house. We all took Carter to his music lessons this evening and had a picnic in the van and watched a movie while Carter was having his lesson. The van is becoming much more of a mobile home lately.
We agreed on a movie night tonight and the family lounged around while watching Madagascar 2. It was kind of strange as nobody could sit still and just watch the movie. The kids were on us and off of us, over on the other couch and back and then bugging each other. Justin would get mad every time Nathan or Carter stretched out on Mom or Dad as we are HIS Mom and Dad. After a nice evening the boys went to bed fairly easily and as fast as that another day is gone. We are thankful for another day together and for Nathan handling his treatment this week well and without a fever.
We agreed on a movie night tonight and the family lounged around while watching Madagascar 2. It was kind of strange as nobody could sit still and just watch the movie. The kids were on us and off of us, over on the other couch and back and then bugging each other. Justin would get mad every time Nathan or Carter stretched out on Mom or Dad as we are HIS Mom and Dad. After a nice evening the boys went to bed fairly easily and as fast as that another day is gone. We are thankful for another day together and for Nathan handling his treatment this week well and without a fever.
Thursday, February 5, 2009
IC Day 32 Update
Today was a good day. Our trip to the clinic for Nathan's ARAC was quick. Since we were anticipating a short visit, Justin came with us and Nathan certainly enjoyed showing him the play room and where the Isagel was. Nathan is really handling his treatments well this week which is great to see.
In discussions with the nurses as to how fast we should see Nathan's counts fall, they said to expect next week's treatments to knock him down again and to take the opportunity to have a little fun with him while he was feeling good. So that we did. We stopped at Uncle Darrell's to return a movie and ended up staying for lunch. In Nathan's words "Uncle Darrell is the best cook - better than mom and dad". We had an enjoyable visit. After playing a little hockey outside, Pokemon battle with Ella, the kids headed down stairs first to play with the Robo Rapter and then when it got really quiet, we peaked to see the three of them playing dolls. Nathan was the Dad, Ella the mom and they were sorting through the play groceries to determine what they should eat that would make them healthy. Justin was more interested in the hockey stick and puck which he carried everywhere with him.
Upon returning home, Nathan dug out the doctor kit and mom's old nurses kit (yes from the '70s) and proceeded to treat his animals for line infections to their ports. It was nice to see him talking to his animals and telling them everything was going to be okay.
The afternoon proceeded with some Wii time with Auntie Lisa, Uncle Jim and Auntie Julianne and then when Carter arrived home from school, the beautiful weather took everyone outside for some hockey. It was great fun. Nathan didn't seem to tire and enjoyed his fresh air. Its been so long since the weather has been nice and Nathan was feeling so well that it was an enjoyable time.
-Shelley
In discussions with the nurses as to how fast we should see Nathan's counts fall, they said to expect next week's treatments to knock him down again and to take the opportunity to have a little fun with him while he was feeling good. So that we did. We stopped at Uncle Darrell's to return a movie and ended up staying for lunch. In Nathan's words "Uncle Darrell is the best cook - better than mom and dad". We had an enjoyable visit. After playing a little hockey outside, Pokemon battle with Ella, the kids headed down stairs first to play with the Robo Rapter and then when it got really quiet, we peaked to see the three of them playing dolls. Nathan was the Dad, Ella the mom and they were sorting through the play groceries to determine what they should eat that would make them healthy. Justin was more interested in the hockey stick and puck which he carried everywhere with him.
Upon returning home, Nathan dug out the doctor kit and mom's old nurses kit (yes from the '70s) and proceeded to treat his animals for line infections to their ports. It was nice to see him talking to his animals and telling them everything was going to be okay.
The afternoon proceeded with some Wii time with Auntie Lisa, Uncle Jim and Auntie Julianne and then when Carter arrived home from school, the beautiful weather took everyone outside for some hockey. It was great fun. Nathan didn't seem to tire and enjoyed his fresh air. Its been so long since the weather has been nice and Nathan was feeling so well that it was an enjoyable time.
-Shelley
Wednesday, February 4, 2009
IC Day 31 Update
Nathan did not have a great night Tuesday night. He was up about 1am indicating that his stomach hurt and that he felt like he could throw up. We gave him some Ondansetron and he came to bed with me while Shelley went to sleep in his bed. He slept the rest of the night but woke up not feeling great again. Once more, we gave him some Ondansetron before heading into the Cancer Center. Every patient is unique on how they react to the chemotherapy drugs. Nathan is no exception as they tell us that the ARAC should not make him nauseous but something surely his. It could still be as a result from his Cyclophosphamide on Monday but it is not supposed to last that long, but again it could.
We went into the Cancer Center this morning expecting the quick in and out today like we had yesterday. However, just to keep us on our toes, they did not have his ARAC prepared before we got there. I think they were trying but they were having computer difficulty. We still were not there overly long as it was only a 20 minute wait or so. The play room was full today, and personally, that is not something I like to see. I sure wish there were not so many children requiring treatment.
Nathan has been asking for a couple of days now if we could go and see Diane and the rest of the kids from his daycare so when we were leaving the Cancer Center we gave Diane a call and she said it would be a good day to stop by. Nathan was pretty excited to go and he got to see quite a few of his little friends. They were all really good to him, and one friend Ryan, told Nathan that he missed him and it was good to see him. It struck me as a very grown up thing for a four year old to say and was just another example of how kids can sometime amaze you with their grasp of situations. (still though, how come they can frustrate so many other times with the lack of understanding...?) Anyway, we had a very nice visit with Diane and Nadine and Nathan was all smiles from when we got there until we had to leave.
Thankfully it was a very nice day in Saskatoon today and we were able to spend a longer time outside this afternoon after Justin woke up from his nap. Nathan enjoys being outside but Justin absolutely cannot get enough. He cries every time we have to bring him in. The other fascinating thing about Justin is that he is fascinated with hockey. He likes to play it indoors, he likes to watch it with me and he certainly likes to play it outdoors. He is even very willing to wait his turn. If Carter and I are playing on the outdoor rink, Justin will hold his stick and hold his puck and just watch us shoot the puck around. It does not matter if it is 5 minutes or a half hour, he just stands on the side and watches. Then when Carter decides he has had enough and heads indoors, Justin drops his puck on the rink and it's his turn to play. He'll bat it back and forth for quite awhile and then he usually asks an adult to come play with him. I am simply amazed at watching him do this.
Nathan had very good evening tonight as well. After supper, his brothers, mother and he all sat down to do some painting. They all quite enjoyed it and got along well sharing paints and everything right until the very end. Carter had made some particularly nice flowers for his mother but Justin decided they could use a few of his finger paint touches - unfortunately Carter didn't agree and a few *issues* ensued. The whole time his brothers were having their discussion Nathan actually stayed out of it and watched. He usually jumps in on one side or another but tonight he decided to stay painting and simply see how it panned out. I much preferred that method of dealing with it.
Tomorrow is another (hopefully) quick dash into the Cancer Center and it will be our last one for the week. Thankfully Nathan has not gotten a fever from the ARAC this time around so maybe, just maybe, Mom and Dad weren't right that the ARAC caused the fever last time. Shelley and I are getting much better at reading Nathan and being able to determine what his counts roughly are and figure out how he's dealing with certain medications before things get too far along. That is nice to realize that you can do it.
We went into the Cancer Center this morning expecting the quick in and out today like we had yesterday. However, just to keep us on our toes, they did not have his ARAC prepared before we got there. I think they were trying but they were having computer difficulty. We still were not there overly long as it was only a 20 minute wait or so. The play room was full today, and personally, that is not something I like to see. I sure wish there were not so many children requiring treatment.
Nathan has been asking for a couple of days now if we could go and see Diane and the rest of the kids from his daycare so when we were leaving the Cancer Center we gave Diane a call and she said it would be a good day to stop by. Nathan was pretty excited to go and he got to see quite a few of his little friends. They were all really good to him, and one friend Ryan, told Nathan that he missed him and it was good to see him. It struck me as a very grown up thing for a four year old to say and was just another example of how kids can sometime amaze you with their grasp of situations. (still though, how come they can frustrate so many other times with the lack of understanding...?) Anyway, we had a very nice visit with Diane and Nadine and Nathan was all smiles from when we got there until we had to leave.
Thankfully it was a very nice day in Saskatoon today and we were able to spend a longer time outside this afternoon after Justin woke up from his nap. Nathan enjoys being outside but Justin absolutely cannot get enough. He cries every time we have to bring him in. The other fascinating thing about Justin is that he is fascinated with hockey. He likes to play it indoors, he likes to watch it with me and he certainly likes to play it outdoors. He is even very willing to wait his turn. If Carter and I are playing on the outdoor rink, Justin will hold his stick and hold his puck and just watch us shoot the puck around. It does not matter if it is 5 minutes or a half hour, he just stands on the side and watches. Then when Carter decides he has had enough and heads indoors, Justin drops his puck on the rink and it's his turn to play. He'll bat it back and forth for quite awhile and then he usually asks an adult to come play with him. I am simply amazed at watching him do this.
Nathan had very good evening tonight as well. After supper, his brothers, mother and he all sat down to do some painting. They all quite enjoyed it and got along well sharing paints and everything right until the very end. Carter had made some particularly nice flowers for his mother but Justin decided they could use a few of his finger paint touches - unfortunately Carter didn't agree and a few *issues* ensued. The whole time his brothers were having their discussion Nathan actually stayed out of it and watched. He usually jumps in on one side or another but tonight he decided to stay painting and simply see how it panned out. I much preferred that method of dealing with it.
Tomorrow is another (hopefully) quick dash into the Cancer Center and it will be our last one for the week. Thankfully Nathan has not gotten a fever from the ARAC this time around so maybe, just maybe, Mom and Dad weren't right that the ARAC caused the fever last time. Shelley and I are getting much better at reading Nathan and being able to determine what his counts roughly are and figure out how he's dealing with certain medications before things get too far along. That is nice to realize that you can do it.
Tuesday, February 3, 2009
IC Day 30 Update
Nathan had a short visit to the Cancer Clinic today. We were anticipating having to wait for the ARAC to be ordered upon Nathan's arrival but to our surprise it was ready and waiting. Evidently we are now "reliable" so it was in and out Tuesday. Compared to the last time he received these meds, he is doing extremely well. His energy level is still up and he is smiling. He felt a little queasy this morning until we gave him his Ondansetron and like the last time he started the 4 straight days of chemo, his appetite was essentially non-existent until supper and then he was hungry eating small portions every 15-20 mins. Makes it difficult to monitor when he needs his night medication either 2 to 3 hours after eating or 1 hour before eating.
Nathan is missing his regular activities including school and seeing his sitter, Diane and the kids at day care. We are hoping to try and arrange some type of short visit but all depends on his counts and whether everyone is healthy. Providing Nathan with some normalcy certainly does wonders to his attitude and spirit.
He asked me for the first time yesterday when we went to say our prayers and included praying for the other sick kids, asking why kids got what he had. Difficult question to answer when you or the medical profession do not have the answer. Hopefully one day they will know.
Nathan is missing his regular activities including school and seeing his sitter, Diane and the kids at day care. We are hoping to try and arrange some type of short visit but all depends on his counts and whether everyone is healthy. Providing Nathan with some normalcy certainly does wonders to his attitude and spirit.
He asked me for the first time yesterday when we went to say our prayers and included praying for the other sick kids, asking why kids got what he had. Difficult question to answer when you or the medical profession do not have the answer. Hopefully one day they will know.
Monday, February 2, 2009
IC Day 29 (finally) Update
We arrived at the Cancer Center shortly before 9am and Nathan had his blood drawn around 9:30. As we talked to the nurse she told us not to get our hopes up as his counts were so low last week that they probably still were not high enough this week to proceed with treatment. However, a difference this week was that they started Nathan on fluids while we waited for the blood results just in case they were OK. The praying must have worked as his blood results came back and they were well above the minimum levels required! His WBC was at 4.69 with his Neutrophils making up 2.65 of that (.75 was what we needed). His RBC was at 3.10, with his hemoglobin at 86 so those numbers were a little low but were acceptable. Lastly, his platelets were way up at 652 (we needed a min of 75) which is above the normal range but that is OK as well.
Anyway, after we got that good news they ordered up his chemotherapy drugs while they gave him fluids via IV. Again, Nathan's new friend Michael was at the clinic today (he was getting some of the same chemo drugs such as Cyclophosphamide) which was nice as they both were scheduled for long days and it makes the days go so much faster when they have someone to play with. The played with their DSs, sometimes connecting to play together; they also played tile rummy with Esther who is one of the volunteers; and they were able to watch a movie while they were both receiving treatment. The Cyclophosphamide is the one that requires 2 hours of fluids before and 4 hours of fluids after to make sure that it is flushed out of the system as it can damage some of the organs such as the kidneys. It was nicer for us than for Michael as we got to go home today whereas Michael had to spend the night in the hospital to continue his fluids and monitor him after his Cyclophosphamide. Nathan also got Cytarabine (ARAC) at the clinic today and that is the one that we suspected gave him a fever last time so we need to be cognisant of that if he becomes febrile again. He has ARAC for the next three days at the clinic. Additionally, Nathan started up his Mercaptopurine (6MP) again tonight and he takes that for the next 14 days straight. That one kind of messes with our evening as Nathan has to fast for 2 hours before taking the 6MP and for one hour after. Makes it hard to have snack time before bed if we don't get to have supper on time such as tonight's 7pm supper after hockey.
We had a little bit of fun organizing our ventures today as I had to leave the clinic early to pick Carter up from school and grab his hockey equipment for his game today. We then went back to the Cancer Center to pick up Nathan and Shelley who then dropped Carter and I off at the hockey arena. After that they went to Shelley's parent's place to pick up Justin and then home to make supper. Nathan was exhausted from his day and had a nap during the drive so made him energetic for the evening. Carter and I bummed a ride back home with his Auntie Pam after hockey and the cousins then played at our house this evening. They all played well and it was very nice to see. Nathan seems to be in a much better mood when all of his counts are relatively normal - seems like it should be obvious but it is not necessarily so.
Our funny (funny hmmmm, not funny haha) story of the day is that Dr Ali kept pulling one or both of aside to talk with us. He had never done that before, normally he would say whatever he had to say in front of Nathan and / or any other parents who were there. I think he was just wanting to play with us as he pulled me aside and then it was just to ask about Nathan's medicines that we give him at home (Septra on the weekends to ward off pneumonia). Next he asked to speak to both of us in private and that was just to tell us that Nathan's counts were fine and we were going to have treatments today. We had already been told that by nurse Kathy and so it seemed strange that we'd be talked to in private for that. Every time he asked to speak to us in private it always sets off little alarm bells in our heads but every time it turned out very innocuous..... strange.
Anyway, after we got that good news they ordered up his chemotherapy drugs while they gave him fluids via IV. Again, Nathan's new friend Michael was at the clinic today (he was getting some of the same chemo drugs such as Cyclophosphamide) which was nice as they both were scheduled for long days and it makes the days go so much faster when they have someone to play with. The played with their DSs, sometimes connecting to play together; they also played tile rummy with Esther who is one of the volunteers; and they were able to watch a movie while they were both receiving treatment. The Cyclophosphamide is the one that requires 2 hours of fluids before and 4 hours of fluids after to make sure that it is flushed out of the system as it can damage some of the organs such as the kidneys. It was nicer for us than for Michael as we got to go home today whereas Michael had to spend the night in the hospital to continue his fluids and monitor him after his Cyclophosphamide. Nathan also got Cytarabine (ARAC) at the clinic today and that is the one that we suspected gave him a fever last time so we need to be cognisant of that if he becomes febrile again. He has ARAC for the next three days at the clinic. Additionally, Nathan started up his Mercaptopurine (6MP) again tonight and he takes that for the next 14 days straight. That one kind of messes with our evening as Nathan has to fast for 2 hours before taking the 6MP and for one hour after. Makes it hard to have snack time before bed if we don't get to have supper on time such as tonight's 7pm supper after hockey.
We had a little bit of fun organizing our ventures today as I had to leave the clinic early to pick Carter up from school and grab his hockey equipment for his game today. We then went back to the Cancer Center to pick up Nathan and Shelley who then dropped Carter and I off at the hockey arena. After that they went to Shelley's parent's place to pick up Justin and then home to make supper. Nathan was exhausted from his day and had a nap during the drive so made him energetic for the evening. Carter and I bummed a ride back home with his Auntie Pam after hockey and the cousins then played at our house this evening. They all played well and it was very nice to see. Nathan seems to be in a much better mood when all of his counts are relatively normal - seems like it should be obvious but it is not necessarily so.
Our funny (funny hmmmm, not funny haha) story of the day is that Dr Ali kept pulling one or both of aside to talk with us. He had never done that before, normally he would say whatever he had to say in front of Nathan and / or any other parents who were there. I think he was just wanting to play with us as he pulled me aside and then it was just to ask about Nathan's medicines that we give him at home (Septra on the weekends to ward off pneumonia). Next he asked to speak to both of us in private and that was just to tell us that Nathan's counts were fine and we were going to have treatments today. We had already been told that by nurse Kathy and so it seemed strange that we'd be talked to in private for that. Every time he asked to speak to us in private it always sets off little alarm bells in our heads but every time it turned out very innocuous..... strange.
Sunday, February 1, 2009
IC Day 29 (and holding) update
I really was making a mistake when I kept counting my days forward. We didn't have any treatments this week and so we did not progress down the protocol. Tomorrow will actually be another try at Day 29 since we've only completed the first 28 days of the Intensified Consolidation phase. Hopefully Nathan's white blood count will be fine tomorrow: Neutraphils over .75; platelets over 75; and we can continue on with a fairly intensive day (but not quite as bad as Day 1). Nathan will get Cyclophosphamide by IV, ARAC by IV and Mercaptopurine by tablets. This second four week stint does not have any lumbar punctures which is both good and bad. Good for the most part as that means Nathan doesn't require anaesthetics (and therefore no fasting) and any time you don't get a needle to your spinal fluid has to be good. The only downside is that Nathan is going to get a PEG-Asparginase treatment in week 3 and he will be awake for it this time. That one is the one with two needles, one to each thigh, that Nathan particularly does not like.
Nathan had a great day today. He woke up in a fairly good mood, I tried to get he and Carter to play together for most of the morning and more often than not they got it right. They were trying to earn Wii time and so were putting in good efforts to get along - there were still disagreements but they were resolved fairly quickly when they reminded each other what they were working for. Then this afternoon Shelley and Nathan went to visit the Bergs. Nathan had a great time playing with Matthew and Will and had a big smile on his face most of the time. Justin and I caught up with them at the Berg's while Carter had a play date with his friend Taylor and they all played well together. Nathan listened well when it was time to leave for home and he even had a bath tonight WITHOUT A BIG FUSS! All in all, Nathan had a pretty good day which I think was made better by being out of our house for a bit. He really needed that before heading into this week so thank you Bergs.
Nathan had a great day today. He woke up in a fairly good mood, I tried to get he and Carter to play together for most of the morning and more often than not they got it right. They were trying to earn Wii time and so were putting in good efforts to get along - there were still disagreements but they were resolved fairly quickly when they reminded each other what they were working for. Then this afternoon Shelley and Nathan went to visit the Bergs. Nathan had a great time playing with Matthew and Will and had a big smile on his face most of the time. Justin and I caught up with them at the Berg's while Carter had a play date with his friend Taylor and they all played well together. Nathan listened well when it was time to leave for home and he even had a bath tonight WITHOUT A BIG FUSS! All in all, Nathan had a pretty good day which I think was made better by being out of our house for a bit. He really needed that before heading into this week so thank you Bergs.
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