Nathan was a go today! We arrived at the Cancer Center at 9am and Nathan had his blood work taken shortly after. It took awhile for the results to come back but they came back with decent numbers. Nathan's RBC was in the normal range at 3.77 with his Hemoglobin at 106 and his platelets were a tad high at 421. His WBC was still fairly low at 2.47 with his Neutrophils making up 1.26 of that. Those are both below the normal range but higher than the .75 required to start treatments and so Nathan had Day 1 of his Augmented Interim Maintenance phase.
Nathan was really good with Dr Ali today. He listened well and whenever Dr Ali grabbed an instrument, Nathan assumed the required position for checkup. He was being a little bit of a goof but at least he was cooperating well unlike some other days. His physical checkup went very well and then we were off to wait...
Nathan's buddy Michael was at the Cancer Center today and so the two of them played for most of the morning. Michael's treatments are progressing well and he only has four left now and they are spaced three weeks apart so unfortunately for us our Monday playdates are coming to an end. Nathan was not allowed to eat today because he was having a lumbar puncture (LP) but that did not stop him first from asking for food and second asking how much longer before he got to go to sleep. He said he was looking forward to the sleep as he was a little tired.
He received his Vinchristine just before noon and then he got his Methotrexate after that. The Methotrexate treatments he is now on are referred to as escalating treatments. What that means is that today he received a standard dose based on his body weight. In 10 days they will give him 1.5 times the amount he received today. If he handles that well, 10 days later he will receive 1.5 times that amount and they keep doing that increase every 10 days until he no longer handles it well. Not handling it well is that his blood counts drop dramatically and do not come up very fast. I'm not exactly sure how they measure that as I do not believe that he does blood work on every visit but there must be some indicator for the doctors.
He was scheduled for his LP at 2pm today but they told us they had it moved up to 1pm. So at about 1:40pm they told us that we could go into the room to get ready... no one else was there yet but we could get set up. We got Nathan in and got him ready for all the monitors and had to look pretty hard to find Pecky the penguin (his gas mask). About 1:50 the anaesthesiologist came in and they started the procedure. I'm sure glad they moved it up an hour or we would have been there really long! Nathan received his Intrathecal Methotrexate well but they had an issue when they gave him his Erwinia L-Asparaginase. Evidently his anaesthesia was wearing off as they tried to give him his leg injection, and couple that with the decision to use just one needle for a large volume of drug and you got a crying and upset Nathan from the pain. He likes to go for his general anaesthesia as he goes to sleep, and then wakes up and does not remember anything but he definitely did not have it so smooth today and hopefully that does not make him anxious about that procedure in the future. On Wednesday they will be giving the Erwinia L-Asparaginase by two needles (dividing the drug in half) and so the decision is to give two smaller and supposedly less painful injections rather than one larger more painful injection.
After Nathan got up from his sleep we went back to the playroom so that he could eat and munch away he did. We had to stay for an hour under observation and thankfully Nathan had no adverse reaction to any of the drugs today and so we were on our way home shortly before 3:30pm. It was a long day at the clinic.
Nathan said he did not feel well at supper time and so had to go and lay down on the couch and watch TV and so we were a little concerned about him. But he got his second wind after we were all done supper (coincidental?) and had fun playing with his brothers. It seemed like he was right back up to where he was before we went in. It will take a couple of days for his blood counts to really drop and sap all of his energy so we will take his energy while we can get it.
Monday, March 9, 2009
Sunday, March 8, 2009
wdii7
After having a pretty busy week with Nathan we decided to lay low today. Nathan got up early again but came to our bed and then slept in (all the way to 8am). We had a pretty good day playing games with the boys and then in the afternoon cousin Michelle came over to keep the game playing going. All in all a pretty good day which we needed in preparation for tomorrow.
Monday we are to be at the Cancer Center early for blood work to see if Nathan can proceed with the Augmented Interim Maintenance phase. If his blood counts are high enough he will get the four chemotherapy drugs tomorrow including two new ones: Methotrexate which he has only had to his spinal column; and Erwinia L-Asparaginase which is the alternate form of the drug that he had an allergic reaction to. His LP is not scheduled until 2pm so that really guarantees a long day if he is a go.
Monday we are to be at the Cancer Center early for blood work to see if Nathan can proceed with the Augmented Interim Maintenance phase. If his blood counts are high enough he will get the four chemotherapy drugs tomorrow including two new ones: Methotrexate which he has only had to his spinal column; and Erwinia L-Asparaginase which is the alternate form of the drug that he had an allergic reaction to. His LP is not scheduled until 2pm so that really guarantees a long day if he is a go.
Saturday, March 7, 2009
wdii4-6
My first three day update... we must have been busy. We have been trying to take advantage of this week where Nathan feels good before we start treatment again on Monday.
Thursday Nathan actually had kind of an off day compared to Wednesday. We tried to keep him engaged at home and to get him to do some of the school work that he got on Wednesday but that did not go over well. Thankfully, Wendy and Lyle came in for the afternoon and that seemed to distract Nathan from the grumps and get him back on track.
Friday Nathan decided that he did not want to go back to school. Carter actually talked him into by promising to play with Nathan at recess. So Nathan decided that he would just go for the morning and that Shelley would just drop him off and would come home. We all know how that works... Nathan stayed at school all day (even for lunch) and Shelley stayed with him there. He had a good day at school and came home with Carter telling him that THAT was the best day ever. Nathan seems to be having a few of those best days ever and that is great for us to hear. To top their Friday off they got to for a sleep over at their cousins Johnathan and Ella. Luckily for us Auntie Pam just gives them healthy snacks and they all go to bed early - at least that is what they tell us. They came home very happy with their sleepover. Shelley and I tried to take advantage of that sleep over by letting Justin have his first sleep over at his grandparents. Shelley and I went to an early show, did some shopping and went out for a drink and some wings. We were still home by 11!
Saturday Nathan and Justin both looked a little tired but we just could not convince Nathan to have a nap when Justin did. We hung out around the house for most of the day and then we had a minor hockey night at the Blades game with Carter. Shelley and I went with Carter while Grandma Elsie looked after Nathan and Justin. We offered to let all the boys have another sleep over at their grandparents but Nathan really wanted to come home with us and Justin wasn't letting his Mommy go so Carter stayed on his own. Nathan explained that one night away was enough and that was good enough for us. He also promised to sleep in til noon but I do not believe that one.
Hopefully we are not overdoing it with Nathan right now but we really are trying to take advantage of him feeling well between treatments. After Monday (when we hopefully start the next phase) we will not have the ability to take in some of the things that he did this week and it will be back to Cancer Center visits as our only outings.
Thursday Nathan actually had kind of an off day compared to Wednesday. We tried to keep him engaged at home and to get him to do some of the school work that he got on Wednesday but that did not go over well. Thankfully, Wendy and Lyle came in for the afternoon and that seemed to distract Nathan from the grumps and get him back on track.
Friday Nathan decided that he did not want to go back to school. Carter actually talked him into by promising to play with Nathan at recess. So Nathan decided that he would just go for the morning and that Shelley would just drop him off and would come home. We all know how that works... Nathan stayed at school all day (even for lunch) and Shelley stayed with him there. He had a good day at school and came home with Carter telling him that THAT was the best day ever. Nathan seems to be having a few of those best days ever and that is great for us to hear. To top their Friday off they got to for a sleep over at their cousins Johnathan and Ella. Luckily for us Auntie Pam just gives them healthy snacks and they all go to bed early - at least that is what they tell us. They came home very happy with their sleepover. Shelley and I tried to take advantage of that sleep over by letting Justin have his first sleep over at his grandparents. Shelley and I went to an early show, did some shopping and went out for a drink and some wings. We were still home by 11!
Saturday Nathan and Justin both looked a little tired but we just could not convince Nathan to have a nap when Justin did. We hung out around the house for most of the day and then we had a minor hockey night at the Blades game with Carter. Shelley and I went with Carter while Grandma Elsie looked after Nathan and Justin. We offered to let all the boys have another sleep over at their grandparents but Nathan really wanted to come home with us and Justin wasn't letting his Mommy go so Carter stayed on his own. Nathan explained that one night away was enough and that was good enough for us. He also promised to sleep in til noon but I do not believe that one.
Hopefully we are not overdoing it with Nathan right now but we really are trying to take advantage of him feeling well between treatments. After Monday (when we hopefully start the next phase) we will not have the ability to take in some of the things that he did this week and it will be back to Cancer Center visits as our only outings.
Wednesday, March 4, 2009
Wdii3
GOD provided us a beautiful day today and we took full advantage of it. Today was a day for spirit building.
Nathan looked and felt really good today so those counts must be on their way up. Its been 16 weeks since Nathan has been to school so when we suggested maybe going for a visit today he was all over it. I dropped Carter off at his class, then spoke with Nathan's teacher to see if anyone was ill and to confirm chicken pox weren't going through the class before deciding if today was the day for him to visit. All was good. When I got home, Nathan was thrilled and wanted to go immediately. I have never seen a child sooo excited about going to school.
He took special care putting gel in his hair to spike it and was excited to pull out his backpack and lunch kit for snack. He tried convincing me to quickly make a sandwich so that he could stay through lunch but I was not ready for that.
Nathan grinned all day! Mrs. Turner was excited to see him as were his classmates. She had time to prep them for his visit so they were excited to see him. It was as if he had never been gone, except maybe for the extra attention he got from his teacher as she tried to test him on several areas. We have a few things to keep working on but otherwise he did really well. The activities were continual and all well received. Carter was surprised and excited to see Nathan at school. For him that provided a little normalcy as well.
We went home for lunch and as we were driving Nathan said he couldn't wait to go back to school all the time. Then he asked why he got this "thing" that he has. I explained to him that we don't know why he got sick and he replied with "I know - it was from skating and hockey". He relates his sickness to the sore legs and inability to walk to skating because it all started around the same time.
Nathan was anxious to get back to school. Gym time started when we returned. You would think most people would find being in a gym with 24 kindergarten kids loud, busy, and over whelming. But for me it was the most relaxing 30 mins I could find. Watching Nathan play the games, play tag, take instructions and follow, and smile the whole time was therapy for me. It was a reminder of the normalcy that we are working towards and the strength and resilience he has.
With the weather being +2, Arron, Justin and Nathan built a snowman after school and then came for a walk (meaning I walked and Justin and Nathan road on the toboggan) to pick Carter up from a friends house. I was exhausted by supper but Nathan must have been using his cloud 9 energy as he was not tired. Our friends Mindy, Del, Jordan and Jessa came over for a visit after supper and the kids enjoyed more floor play.
Bedtime was easy tonight, another sign of a full day. We were blessed to have the break from treatment as our spirits needed the rejuvenating as much as Nathan's counts.
Shelley
Nathan looked and felt really good today so those counts must be on their way up. Its been 16 weeks since Nathan has been to school so when we suggested maybe going for a visit today he was all over it. I dropped Carter off at his class, then spoke with Nathan's teacher to see if anyone was ill and to confirm chicken pox weren't going through the class before deciding if today was the day for him to visit. All was good. When I got home, Nathan was thrilled and wanted to go immediately. I have never seen a child sooo excited about going to school.
He took special care putting gel in his hair to spike it and was excited to pull out his backpack and lunch kit for snack. He tried convincing me to quickly make a sandwich so that he could stay through lunch but I was not ready for that.
Nathan grinned all day! Mrs. Turner was excited to see him as were his classmates. She had time to prep them for his visit so they were excited to see him. It was as if he had never been gone, except maybe for the extra attention he got from his teacher as she tried to test him on several areas. We have a few things to keep working on but otherwise he did really well. The activities were continual and all well received. Carter was surprised and excited to see Nathan at school. For him that provided a little normalcy as well.
We went home for lunch and as we were driving Nathan said he couldn't wait to go back to school all the time. Then he asked why he got this "thing" that he has. I explained to him that we don't know why he got sick and he replied with "I know - it was from skating and hockey". He relates his sickness to the sore legs and inability to walk to skating because it all started around the same time.
Nathan was anxious to get back to school. Gym time started when we returned. You would think most people would find being in a gym with 24 kindergarten kids loud, busy, and over whelming. But for me it was the most relaxing 30 mins I could find. Watching Nathan play the games, play tag, take instructions and follow, and smile the whole time was therapy for me. It was a reminder of the normalcy that we are working towards and the strength and resilience he has.
With the weather being +2, Arron, Justin and Nathan built a snowman after school and then came for a walk (meaning I walked and Justin and Nathan road on the toboggan) to pick Carter up from a friends house. I was exhausted by supper but Nathan must have been using his cloud 9 energy as he was not tired. Our friends Mindy, Del, Jordan and Jessa came over for a visit after supper and the kids enjoyed more floor play.
Bedtime was easy tonight, another sign of a full day. We were blessed to have the break from treatment as our spirits needed the rejuvenating as much as Nathan's counts.
Shelley
Tuesday, March 3, 2009
wdii2
We had a hard day of growing white blood cells today. I'm guessing they were growing as Nathan was very combative this morning. It was a struggle to get him to do anything. One of the hardest parts of these weeks without treatment is that we don't get any kind of schedule going and do not venture out of the house very far and that plays on all of our nerves.
The afternoon and evening went a little better as we tried to mix things up a bit. Nathan's best buddy Matt came over for a visit in the early afternoon and then cousins Ella and Johnathan came over after school. It was nice getting a few more bodies in the house to distract Nathan a little more.
As expected, nurse Cathy phoned today to let us know that we would try Nathan's treatment next Monday. Hopefully it is all good to go then. This week is simply going to be a week of waiting, at least the weather is nice and we'll be able to get the kids out a little more.
The afternoon and evening went a little better as we tried to mix things up a bit. Nathan's best buddy Matt came over for a visit in the early afternoon and then cousins Ella and Johnathan came over after school. It was nice getting a few more bodies in the house to distract Nathan a little more.
As expected, nurse Cathy phoned today to let us know that we would try Nathan's treatment next Monday. Hopefully it is all good to go then. This week is simply going to be a week of waiting, at least the weather is nice and we'll be able to get the kids out a little more.
Monday, March 2, 2009
What day is it...
Well I sure would like to say that this was Day 1 of Augmented Interim Maintenance and I'd also sure like to say we expected this but ... quite the opposite - we were ETUd again. For those that don't follow regularly, ETU is expect the unexpected and it keeps happening.
Today was NOT a long day at the Cancer Center. We showed up early for blood work and expected that it would come back fine however it did not. Nathan's Neutrophils did not meet the .75 requirement; they were darn close at .69 but evidently not close enough. The rest of his blood work was OK. His RBC was at 3.28 (just low) and his Platelets were at 293 (smack in the middle of normal) but those darn WBC were only at 1.90. Shelley and I were disappointed that we could not get this next phase started but Nathan was the most upset. We prepared him well today for everything he was going to get and he certainly was mad when we told him that it was not going to happen. He told Dr Ali that he was mad that would not get to see the green men (anaesthesiologists), mad that he wouldn't get the magic milk (drink to help forget the pain) and he was mad that we had to de-access his port as he was ready for treatments today. I tried to use the doctors line on the nurse that if you take two blood samples back to back you will get different results. I inquired to whether we could just wait for a couple of hours and get his blood test again as his LP was scheduled til 1pm. Nurse Cathy didn't think much of that suggestion and said we could play that game all day til we got one we liked but that was not how the protocol worked. I guess there is a legitimate reason we are to wait and so wait we will.
We ended up staying at the clinic for another hour so that Nathan could play with Michael. As it seems that our only social outings are to the Cancer Center we stayed and kept Michael company while he was getting his treatment and Shelley and I got to visit with Michael's parents. We met another set of parents today whose four year old son was just entering the Maintenance phase. He was diagnosed in August with ALL Standard Risk - what a difference that makes in length of time for treatments. However, again Shelley and I were a little confused as these parents did not know what phases their son went through or what chemotherapy drugs he received during treatment. The mother's phrase was "I just come in when they tell me to." Now I'm trying to figure out if Shelley and I are the anomaly in regards to paying attention to, and understanding, the treatments that Nathan is receiving.
The rest of our day went fairly well. Nathan played well with Justin and I took Carter to hockey practice after school. Shelley made a wonderful supper and as we were finishing Auntie Pam phoned to invite us over to share in her birthday cake. The boys counter offered that they would go for cake as long as they could play with their cousins and Auntie Pam countered that with requiring birthday hugs to which the boys agreed. I'm glad they did as that was some very good chocolate cake.
Anyway, we do not know what to expect this week.... Dr Ali said that since Nathan's counts were so close that we might start up on Wednesday with his treatments. However, nurse Cathy came in next and said that they would see us next Monday. We informed her of what Dr Ali had said and she told us that she would look into the protocol to see exactly when we would return but if past experience is any predictor - nurse Cathy will be correct and we will be delayed a week.
Although we are anxious to keep Nathan moving forward, the wait is likely a good thing as Nathan will be that much stronger when treatment starts again. Patience is a virtue that we are still learning.
Today was NOT a long day at the Cancer Center. We showed up early for blood work and expected that it would come back fine however it did not. Nathan's Neutrophils did not meet the .75 requirement; they were darn close at .69 but evidently not close enough. The rest of his blood work was OK. His RBC was at 3.28 (just low) and his Platelets were at 293 (smack in the middle of normal) but those darn WBC were only at 1.90. Shelley and I were disappointed that we could not get this next phase started but Nathan was the most upset. We prepared him well today for everything he was going to get and he certainly was mad when we told him that it was not going to happen. He told Dr Ali that he was mad that would not get to see the green men (anaesthesiologists), mad that he wouldn't get the magic milk (drink to help forget the pain) and he was mad that we had to de-access his port as he was ready for treatments today. I tried to use the doctors line on the nurse that if you take two blood samples back to back you will get different results. I inquired to whether we could just wait for a couple of hours and get his blood test again as his LP was scheduled til 1pm. Nurse Cathy didn't think much of that suggestion and said we could play that game all day til we got one we liked but that was not how the protocol worked. I guess there is a legitimate reason we are to wait and so wait we will.
We ended up staying at the clinic for another hour so that Nathan could play with Michael. As it seems that our only social outings are to the Cancer Center we stayed and kept Michael company while he was getting his treatment and Shelley and I got to visit with Michael's parents. We met another set of parents today whose four year old son was just entering the Maintenance phase. He was diagnosed in August with ALL Standard Risk - what a difference that makes in length of time for treatments. However, again Shelley and I were a little confused as these parents did not know what phases their son went through or what chemotherapy drugs he received during treatment. The mother's phrase was "I just come in when they tell me to." Now I'm trying to figure out if Shelley and I are the anomaly in regards to paying attention to, and understanding, the treatments that Nathan is receiving.
The rest of our day went fairly well. Nathan played well with Justin and I took Carter to hockey practice after school. Shelley made a wonderful supper and as we were finishing Auntie Pam phoned to invite us over to share in her birthday cake. The boys counter offered that they would go for cake as long as they could play with their cousins and Auntie Pam countered that with requiring birthday hugs to which the boys agreed. I'm glad they did as that was some very good chocolate cake.
Anyway, we do not know what to expect this week.... Dr Ali said that since Nathan's counts were so close that we might start up on Wednesday with his treatments. However, nurse Cathy came in next and said that they would see us next Monday. We informed her of what Dr Ali had said and she told us that she would look into the protocol to see exactly when we would return but if past experience is any predictor - nurse Cathy will be correct and we will be delayed a week.
Although we are anxious to keep Nathan moving forward, the wait is likely a good thing as Nathan will be that much stronger when treatment starts again. Patience is a virtue that we are still learning.
Sunday, March 1, 2009
IC Day 56
Well another night of less than stellar sleep. Shelley and I went to bed late and I was having trouble getting to sleep. That may have been a good thing as Nathan was up at 1am and had to come to bed with us because his legs hurt. You know that they actually do hurt because he does not cry in his sleep very often but he was last night. After a couple of hours of that I was able to get Nathan back into his bed and then had that wonderful stretch til 6am. First Nathan came to bed, then Justin and then Carter so that meant it was time for one of us to get up and evidently I drew the short straw.
We are very thankful for another good day with our boys. Grandma Darlene and Grandpa Ray stopped in to visit for a few hours on their way down to Montana and the boys enjoy spending time with them. We had a pretty good day together and then Carter and I went to watch cousin Tyler's playoff hockey game in Saskatoon. Carter really enjoyed the game and cousin Tyler performed well by scoring a couple goals but unfortunately it was in a losing cause as they lost in overtime.
Carter and I got back and it was time for a very late supper and then bedtime. Tonight Carter asked Shelley to lay with him for a bit and Nathan asked me to lay with him. Justin was calling out so I went into his room to see what he wanted and he asked "Daddy sleep on floor two minutes?" I just shook my head and said I had to go put Nathan to bed and, of course, Justin disagreed. As soon as he gets his big boy bed I don't think I will get away with just telling him to lay down. After all that the boys went to sleep fairly easily (no kidding).
Tomorrow will be a long day for us at the Cancer Center as it is the start of the Augmented Interim Maintenance phase. We are supposed to be in at 8:30am for blood work to make sure we can proceed with this phase but Shelley and I think Nathan's counts will be just fine for that. He will get the Vinchristine by IV and also Methotrexate by IV. He is not scheduled for his lumbar puncture (LP) until the afternoon at which time he will get Intrathecal Methotrexate by LP and Erwinia L-Asparaginase by two needles to the thighs, all while under general anaesthetic. We will then have to wait to make sure he does not have any allergic reactions to this form of the Asparaginase. Hopefully he does not have an adverse reaction to this form of the drug and the rest of the treatments can proceed accordingly.
Please continue to pray for Nathan and our family. We firmly believe that the positive thoughts and positive prayers are helping.
We are very thankful for another good day with our boys. Grandma Darlene and Grandpa Ray stopped in to visit for a few hours on their way down to Montana and the boys enjoy spending time with them. We had a pretty good day together and then Carter and I went to watch cousin Tyler's playoff hockey game in Saskatoon. Carter really enjoyed the game and cousin Tyler performed well by scoring a couple goals but unfortunately it was in a losing cause as they lost in overtime.
Carter and I got back and it was time for a very late supper and then bedtime. Tonight Carter asked Shelley to lay with him for a bit and Nathan asked me to lay with him. Justin was calling out so I went into his room to see what he wanted and he asked "Daddy sleep on floor two minutes?" I just shook my head and said I had to go put Nathan to bed and, of course, Justin disagreed. As soon as he gets his big boy bed I don't think I will get away with just telling him to lay down. After all that the boys went to sleep fairly easily (no kidding).
Tomorrow will be a long day for us at the Cancer Center as it is the start of the Augmented Interim Maintenance phase. We are supposed to be in at 8:30am for blood work to make sure we can proceed with this phase but Shelley and I think Nathan's counts will be just fine for that. He will get the Vinchristine by IV and also Methotrexate by IV. He is not scheduled for his lumbar puncture (LP) until the afternoon at which time he will get Intrathecal Methotrexate by LP and Erwinia L-Asparaginase by two needles to the thighs, all while under general anaesthetic. We will then have to wait to make sure he does not have any allergic reactions to this form of the Asparaginase. Hopefully he does not have an adverse reaction to this form of the drug and the rest of the treatments can proceed accordingly.
Please continue to pray for Nathan and our family. We firmly believe that the positive thoughts and positive prayers are helping.
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