Nathan is doing well today but it was eventful. After all the fluids he received yesterday he was up about 1am to go to the washroom. Thinking everything was fine, off to bed he went again, however he was up at 4am trying to throw up. He didn't actually throw up but he had a few dry heaves that made Shelley and I worried. We then gave him his Ondansetron which is an anti-nausea medication. He went back to bed after that and we actually had to wake him up shortly after 10 to get ready for our 11am appointment today. And he woke up grouchy! This was probably the biggest mood swing day we've had. By the time we got to the Cancer Center he was in a great mood singing out loud. He got sad a little later, then happy again. Then he was mad and then happy. Then tired and going to bed but then decided he was hungry and got up again. Then he was going to bed again but then decided to get up to play the Wii and was happy. After a little bit of that he was sad and it was time for bed for a third time and this time he stuck with it. Holy yo-yo mood swings!
Our time at the Clinic today wasn't quite as fast as we thought it was going to be but we did learn something today. They do not get his chemo drugs ready before he gets there, rather they wait until he shows up and they they prepare the drugs. They said something about the drugs being expensive and they don't want to make it up before hand with the chance it will go to waste if the person doesn't show. Seems to me that the person will show when they are in this kind of treatment. Anyway, it took over an hour for the drug to be ready, 2 minutes to give it to Nathan and then 20 minutes of a fluid drip. Then they packaged Nathan's port access line up again to use tomorrow so we were still out by about 1pm but I did think it would be quicker. Thankfully tomorrow is a special circumstance and they already have the drug made up for Nathan so it should be a faster day. And another thing we learned today is that Ondansetron is a preventative drug (to prevent nausea) and doesn't work as well for treatment of nausea. That means that we are supposed to give the drug to Nathan at regular intervals and to not wait until he shows signs of nausea.
Anyway, that's enough for today as we have to get back to partying! We had Shelley's sister Lorrie and her beau Chris over for awhile and then my brother Perry and his family stopped in for a vist. Nathan went to bed by 8, Justin at 9:30 and Shelley could be next. Carter is going to try to stay up til midnight but he just might be up by himself if he does!
HAPPY NEW YEAR everyone!
Wednesday, December 31, 2008
Tuesday, December 30, 2008
Day 1 Update
Yup, you read it right, we are back to Day 1. We have now entered the second phase called the Intensified Consolidation phase and what a loooong Day 1 it was. We were at the Cancer Center shortly after 8 am and we left about 4pm and the whole time he was getting fluids. All those fluids were to make sure that the excess of the chemo drugs were flushed from his system and didn't end up damaging any organs. Nathan was in great spirits going to the Cancer Center as his brother Carter came with him today. Nathan was almost bouncing off the walls and he had the nurses and doctors chuckling all day. The green men (anaesthesiologists) came close to on time and so he was done his lumbar puncture and first chemo shot before 10am. That is always important as he can eat after that happens! He even named his penguin shaped oxygen mask "pecky the penguin". Dr Mpofu checked him out today and had to smile quite a few times as Nathan was telling him what to do next and what the instruments were for. And then when he was checking Nathan's reflexes they were all reacting normally to the taps until he got to Nathan's right knee which shot his foot towards the ceiling when hit. I think it surprised Dr Mpofu and it really got Nathan giggling again. He then got some anti-emetics and his Cytarabine. The strong chemo drug Cyclophosphamide came a little later than planned but they got that going right before noon. That took an hour to go in and then it was more fluids and thankfully Nathan did not exhibit any of the ill side effects to the drugs and so we did have a good afternoon at the Cancer Center. Nathan and Carter played the Playstation there for a couple hours and then we played a few board games. It takes a lot of different things to try to fill 8 hours in a waiting room! There was the DSs, puzzles, drawing, board games, Playstation, more board games all to fit in between treatments - it was really nice that Carter was with us. When it was time to leave today they asked Nathan if he wanted his port out or get packaged up since he had to come back in tomorrow and he chose to be packaged up. They put gauze and tape around everything and then even put a gauze strip around his body like a mummy - that amused him.
On the way home from the Cancer Center we were simply dropping Carter off at his cousin's house as Johnathan was having his birthday celebration tonight - or as Carter called it "his cake thing". I went in to drop Carter off and visit for a quick minute to discuss when we might bring Nathan back later for a few minutes and all of a sudden there is a knock on the door. Nathan is there (with Shelley) and he has to go pee! Once he was inside there was no taking him out right away - he wanted to play with his cousins too. So we stayed, we imposed for supper, the boys played, we did the cake thing, we saw the opening of the presents and then we left. Nathan was good the whole time and insisted on staying but once the presents were opened he was ready to come home. Nathan also had to take off his shirt a few times because he was so hot; he really just wanted to show people his packaged up port. So thank you Darrell, Pam and Johnathan's birthday celebration for giving all of us a really nice evening.
Our interesting story today was that we had a interesting substitute nurse. One of our usual wonderful nurses, Kathy, was on vacation so Elise filled in today. She was really good to talk to as she actually was an ALL survivor. She was also diagnosed with ALL at the age of five and she had all of her treatments at the Saskatoon Cancer Center as well. She was very well positioned to talk with us about the various treatments and how she responded to them and what she remembered of what actually happened. It was kind of funny when she mentioned that some of the furniture and the toys in the play room were the exact same ones she played with 20 years ago as well as Nathan's two main nurses.
We now have our roadmap for this phase and already it is changing thing. We don't have enough good things to say about the Cancer Center and the people working there. They worked hard with us today trying to find options and ways to make the protocol work as it is supposed to. It is going to be hard to keep up with but right now it appears that we will skip Day 7 and go from 6 straight to 8 (and we thought 7 would have been lucky). Our main days are now moving from Tuesdays to Mondays so the start of a new week in the protocol will actually coincide with the start of the week. And lastly, but certainly not least, Nathan was to have his third day (of four straight days) of Cytarabine on New Years day when the Clinic is closed. The solution is that nurse Jan is going to come in on her holiday and meet us at the clinic to open it up and give Nathan his meds. Really wonderful people.
Shelley and I are still struggling over the idea that it is harder to keep Nathan in remission than it was to get him to that point. We weren't quite expecting ponies and flowers this next stage but we did not think that it would be this much tougher than the first phase.
Oh, and one last funny note, the nurses gave Nathan the nickname "DS" today. One of Nathan's tricks is to be playing his DS when they are accessing his port to *ignore* the fact that they are poking him with a big needle. In the morning Nathan seemed to be quite happy with his new nickname. It was such a long day that after Nathan was packaged up to leave and nurse Jan said "see you tomorrow DS" that Nathan cried. He sobbingly told me that he didn't like the DS nickname anymore and that Jan hurt his feelings.
On the way home from the Cancer Center we were simply dropping Carter off at his cousin's house as Johnathan was having his birthday celebration tonight - or as Carter called it "his cake thing". I went in to drop Carter off and visit for a quick minute to discuss when we might bring Nathan back later for a few minutes and all of a sudden there is a knock on the door. Nathan is there (with Shelley) and he has to go pee! Once he was inside there was no taking him out right away - he wanted to play with his cousins too. So we stayed, we imposed for supper, the boys played, we did the cake thing, we saw the opening of the presents and then we left. Nathan was good the whole time and insisted on staying but once the presents were opened he was ready to come home. Nathan also had to take off his shirt a few times because he was so hot; he really just wanted to show people his packaged up port. So thank you Darrell, Pam and Johnathan's birthday celebration for giving all of us a really nice evening.
Our interesting story today was that we had a interesting substitute nurse. One of our usual wonderful nurses, Kathy, was on vacation so Elise filled in today. She was really good to talk to as she actually was an ALL survivor. She was also diagnosed with ALL at the age of five and she had all of her treatments at the Saskatoon Cancer Center as well. She was very well positioned to talk with us about the various treatments and how she responded to them and what she remembered of what actually happened. It was kind of funny when she mentioned that some of the furniture and the toys in the play room were the exact same ones she played with 20 years ago as well as Nathan's two main nurses.
We now have our roadmap for this phase and already it is changing thing. We don't have enough good things to say about the Cancer Center and the people working there. They worked hard with us today trying to find options and ways to make the protocol work as it is supposed to. It is going to be hard to keep up with but right now it appears that we will skip Day 7 and go from 6 straight to 8 (and we thought 7 would have been lucky). Our main days are now moving from Tuesdays to Mondays so the start of a new week in the protocol will actually coincide with the start of the week. And lastly, but certainly not least, Nathan was to have his third day (of four straight days) of Cytarabine on New Years day when the Clinic is closed. The solution is that nurse Jan is going to come in on her holiday and meet us at the clinic to open it up and give Nathan his meds. Really wonderful people.
Shelley and I are still struggling over the idea that it is harder to keep Nathan in remission than it was to get him to that point. We weren't quite expecting ponies and flowers this next stage but we did not think that it would be this much tougher than the first phase.
Oh, and one last funny note, the nurses gave Nathan the nickname "DS" today. One of Nathan's tricks is to be playing his DS when they are accessing his port to *ignore* the fact that they are poking him with a big needle. In the morning Nathan seemed to be quite happy with his new nickname. It was such a long day that after Nathan was packaged up to leave and nurse Jan said "see you tomorrow DS" that Nathan cried. He sobbingly told me that he didn't like the DS nickname anymore and that Jan hurt his feelings.
Monday, December 29, 2008
Day 35 Update
What a day full of information! Well I always say that I hope I'll know more tomorrow and today was one of those tomorrows. First the good stuff: Nathan's official blast count was actually 1.4%; his MRD test came back at less than .01% so he is considered MRD negative; and finally his blood work today was excellent with his WBC at 4.13 with Neutrophils of 1.93, his Hemoglobin was still 88. but his platelets were way up at 589 (which is actually high but is a rebound kind of number).
So with this kind of information you'd think we would be on cloud nine but leukemia has a way of preventing that. As we knew, Nathan was classed as a slow early responder because he wasn't less than 5% by day 15. What we didn't know was all that means to his treatments. He has now been further subclassed as Standard Risk - HIGH ALL. This means that his treatments are actually going to be more intense, or augmented, as they termed it. In fact, with his HIGH risk status there is no clinical study other than the research \ results. There is only one path for him to follow in the protocol and it is a very tough path. The good news is that at least his blood work is good enough for him to start on the next phase tomorrow - at least I think that it is good news. This information was really, really hard to take today as it was not what we were expecting.
Our phase that starts tomorrow is called Intensified Consolidation and it lasts for 8 weeks and it starts off with a bang. He gets four chemotherapy drugs tomorrow one of which, Cyclophasphamide, is particularly troublesome. We have to be in at the Cancer Center by 8 am to start him off with two hours of fluids through his port; it then takes an hour to get the chemo drug dripped through, and then four hours of fluids afterwards to make sure the drug gets flushed through his bladder and kidneys. The worry is that the excess drug congregates in those organs and can severely damage them. The side effects to this drug are such that it can interrupt the administration of it and if that happens we then get admitted to the hospital overnight. Meanwhile he also gets Cytarabine (by IV) and Mercaptopurine (by pill) and an Intrathecal Methotrexate (by lumbar puncture). And that is Day 1 of the new phase. We then have to be at the Cancer Center for 8 of the next 12 days mostly for Cytarabine which at least most of the days should be quick trips.
I guess the thing that makes this quite hard was that Nathan was really Nathan today. He had his laugh, his sense of humour, his giggles and his compassion back. He had a really good day today and looked to be in good health, and tomorrow we will make him sick again. We know that it is for the purpose of making him well in the long run but it seems like a strange thing to have to do to your child. All we can do is trust his doctors and the Cancer Center and believe that what we are doing will be for the long term good health of Nathan and our family. We were truly blessed that we were able to have a good Christmas with all of our boys before we have to embark on this next trial. Once again, we ask you for your continued prayers and deeply thank you for the prayers that have already been given.
So with this kind of information you'd think we would be on cloud nine but leukemia has a way of preventing that. As we knew, Nathan was classed as a slow early responder because he wasn't less than 5% by day 15. What we didn't know was all that means to his treatments. He has now been further subclassed as Standard Risk - HIGH ALL. This means that his treatments are actually going to be more intense, or augmented, as they termed it. In fact, with his HIGH risk status there is no clinical study other than the research \ results. There is only one path for him to follow in the protocol and it is a very tough path. The good news is that at least his blood work is good enough for him to start on the next phase tomorrow - at least I think that it is good news. This information was really, really hard to take today as it was not what we were expecting.
Our phase that starts tomorrow is called Intensified Consolidation and it lasts for 8 weeks and it starts off with a bang. He gets four chemotherapy drugs tomorrow one of which, Cyclophasphamide, is particularly troublesome. We have to be in at the Cancer Center by 8 am to start him off with two hours of fluids through his port; it then takes an hour to get the chemo drug dripped through, and then four hours of fluids afterwards to make sure the drug gets flushed through his bladder and kidneys. The worry is that the excess drug congregates in those organs and can severely damage them. The side effects to this drug are such that it can interrupt the administration of it and if that happens we then get admitted to the hospital overnight. Meanwhile he also gets Cytarabine (by IV) and Mercaptopurine (by pill) and an Intrathecal Methotrexate (by lumbar puncture). And that is Day 1 of the new phase. We then have to be at the Cancer Center for 8 of the next 12 days mostly for Cytarabine which at least most of the days should be quick trips.
I guess the thing that makes this quite hard was that Nathan was really Nathan today. He had his laugh, his sense of humour, his giggles and his compassion back. He had a really good day today and looked to be in good health, and tomorrow we will make him sick again. We know that it is for the purpose of making him well in the long run but it seems like a strange thing to have to do to your child. All we can do is trust his doctors and the Cancer Center and believe that what we are doing will be for the long term good health of Nathan and our family. We were truly blessed that we were able to have a good Christmas with all of our boys before we have to embark on this next trial. Once again, we ask you for your continued prayers and deeply thank you for the prayers that have already been given.
Sunday, December 28, 2008
Day 34 Update
We had another pretty good day today. Nathan is sleeping OK but his appetite is still high. It is nice to see him in better spirits and actually smiling and laughing these days. He still has his sombre moments when he remembers that he is sick and he gets sad but luckily these don't last very long and he pops right back out of them.
We actually went outside today! I don't know how many days in a row we've been housebound but it sure seemed like forever. We took advantage of the -7C weather and took all the boys on a sled ride to the big hill where Nathan watched his brothers go up and down. Shelley and Nathan didn't stay very long and headed back before he got too cold while Carter, Justin and I had quite a few more sled rides. Justin was very cute with his "just one more" that we did 10 or 12 one mores.
This evening we played a little Cadoo, a gift left by Santa for our family and were having quite a bit of fun right til the end. Another reminder happened right near the end when Nathan had to act out "paper airplane". He folded up the paper and threw it and then pretended to be a plane flying. The problem happened when he only got three steps and his plane crashed - he just can't fly like he used to. We gently teased him that he didn't have to make it just like our real paper airplanes that crash so fast! We were able to get him back up but he was done walking for the evening.
Tomorrow is an important day for us as it is the last day of the induction phase. Nathan has to get blood work done and a full check up and then we have to meet with Dr Ali to discuss how the first phase went, hopefully get official confirmation that he is in remission, and then decided on what the next path in the protocol will be. Please continue to pray for our brave little man. He is handling it as well as to be expected but any and all prayers are appreciated.
We actually went outside today! I don't know how many days in a row we've been housebound but it sure seemed like forever. We took advantage of the -7C weather and took all the boys on a sled ride to the big hill where Nathan watched his brothers go up and down. Shelley and Nathan didn't stay very long and headed back before he got too cold while Carter, Justin and I had quite a few more sled rides. Justin was very cute with his "just one more" that we did 10 or 12 one mores.
This evening we played a little Cadoo, a gift left by Santa for our family and were having quite a bit of fun right til the end. Another reminder happened right near the end when Nathan had to act out "paper airplane". He folded up the paper and threw it and then pretended to be a plane flying. The problem happened when he only got three steps and his plane crashed - he just can't fly like he used to. We gently teased him that he didn't have to make it just like our real paper airplanes that crash so fast! We were able to get him back up but he was done walking for the evening.
Tomorrow is an important day for us as it is the last day of the induction phase. Nathan has to get blood work done and a full check up and then we have to meet with Dr Ali to discuss how the first phase went, hopefully get official confirmation that he is in remission, and then decided on what the next path in the protocol will be. Please continue to pray for our brave little man. He is handling it as well as to be expected but any and all prayers are appreciated.
Saturday, December 27, 2008
Day 31-33 Update
Merry Christmas once again!
You probably noticed that there were no updates on Christmas or boxing day and as they say, sometimes no news is good news. Nathan has been progressing and it's great to see. His laugh and smile are back, his teasing nature is going strong and sleep, glorious sleep, is getting back to normal. Nathan has still been getting up often to use the washroom but we no longer need a 4am snack to get back to bed. Meal times are also more manageable. Nathan can actually wait until the food is made to start eating and the volumes, though high, are no longer astronomical. On our scale Nathan has gone from 57 pounds down to 51 pounds and his cheeks aren't bursting out of his face anymore. For comparison, his 'big' brother Carter is 47 pounds and about 4 inches taller. One of the things that is still missing is "running around". Nathan was always in constant motion before and he is still quite sedentary now. He is moving around more and doing it mostly on his own but he still has quite a rocking gait and there is no thoughts of running just yet.
Christmas was very nice and the boys all received too many presents! I say that every year but perhaps I am right this year. :-) Justin was the first one up, and Carter was up second so that means that yup, Nathan was the late riser on Christmas. We lasted until 8 am and then let the other two boys start yelling "ho, ho, ho - Merry Christmas" and then Nathan woke up. Initially he wasn't very happy about being awake but the presents made it ok. Shelley's family came over in the afternoon and we had a lovely supper with them. And then the kids had to open even more presents - boy that was a tough day.
Boxing day was filled with playing and testing out the new toys so that was an extremely busy day as well. This morning, after a late evening of playing Mariokart with Auntie Lorrie, everyone slept in. Nathan was still the early riser but it was shortly after 8:30 - that was a nice change. And food was not needed right away, but it was still needed. There were only 3.5 eggs for breakfast and one toast - see I told you it was coming down! We are hoping to get Nathan outside today or tomorrow if the weather cooperates just a little bit more. He has been house bound together with his family so a change of scenery we thought would be nice even if only for 10 mins.
We sincerely hope that each and every one of you had a wonderful Christmas as we did. We were really shown the spirit of the season with all the wonderful thoughts and actions that people did for us. We may sound like a broken record, but thanks again!
-Arron
Wednesday, December 24, 2008
Day 30 Update
Merry Christmas everyone! If you couldn't tell from the post yesterday we were a little taken by surprise. First that Susan would phone us and second that we got such good news. Carter had to ask Shelley "Why are you crying and smiling at the same time?" I don't think Nathan quite gets the importance of yesterday results but Shelley and I certainly do.
Even though we are done with the steroids they are still having their affect on Nathan. He was still up a bunch of times in the middle of the night and still wanted a snack. That said, snack time wasn't until 6am instead of 4am AND he actually went back to sleep until about 8:30am. Unfortunately Justin and I were up shortly after 7am. Carter slept in until 10am and Shelley was some time after that (she had been up the most with Nathan during the night). Nathan's appetite hasn't quite shrunk yet either - breakfast was two large bowls of porridge and two PB&J toast. After that he was looking for rice crisps and Boursin cheese (the kid has got taste :-). Ah well, it will go down and we are looking forward to it.
Nathan has had a pretty good day today. Video games, video games and more video games and Shelley and I were happy! Confused? Nathan and Carter were playing the Wii this afternoon and Nathan was standing to play it so that is more improvement! He has been sitting up to play his DS versus laying down like he usually goes so again we take that as progress. We'll know we are getting almost there when we start fighting over the video games again! Nathan is also pretty happy that all he has for medications right now is the Magic Mouthwash. We told him that he has a week break and we got a huge smile from him! He is so happy he is actually doing the Magic Mouthwash by himself now without us having to cajole and convince him and run the syringe for him.
We are getting ready for Christmas Eve supper with the McLeod clan. Nathan and Carter have been very persistent about asking to open presents and funnily enough they can usually convince their mother to open "just one more". I love them all! Last but certainly not least, Merry Christmas to everyone and we wish you all a happy and healthy Christmas.
Even though we are done with the steroids they are still having their affect on Nathan. He was still up a bunch of times in the middle of the night and still wanted a snack. That said, snack time wasn't until 6am instead of 4am AND he actually went back to sleep until about 8:30am. Unfortunately Justin and I were up shortly after 7am. Carter slept in until 10am and Shelley was some time after that (she had been up the most with Nathan during the night). Nathan's appetite hasn't quite shrunk yet either - breakfast was two large bowls of porridge and two PB&J toast. After that he was looking for rice crisps and Boursin cheese (the kid has got taste :-). Ah well, it will go down and we are looking forward to it.
Nathan has had a pretty good day today. Video games, video games and more video games and Shelley and I were happy! Confused? Nathan and Carter were playing the Wii this afternoon and Nathan was standing to play it so that is more improvement! He has been sitting up to play his DS versus laying down like he usually goes so again we take that as progress. We'll know we are getting almost there when we start fighting over the video games again! Nathan is also pretty happy that all he has for medications right now is the Magic Mouthwash. We told him that he has a week break and we got a huge smile from him! He is so happy he is actually doing the Magic Mouthwash by himself now without us having to cajole and convince him and run the syringe for him.
We are getting ready for Christmas Eve supper with the McLeod clan. Nathan and Carter have been very persistent about asking to open presents and funnily enough they can usually convince their mother to open "just one more". I love them all! Last but certainly not least, Merry Christmas to everyone and we wish you all a happy and healthy Christmas.
Tuesday, December 23, 2008
Day 29 Update
Between my writing of this posting and actually posting it we received a phone call from Susan at the Cancer Center.
NATHAN IS unofficially IN REMISSION!!
The unofficial blast count was 1.6% - and the reason it is unofficial is because the lab has phoned the initial results in to the Clinic. They will finish the testing, the double checking and writing the official results up and we will still get those official results next week. Next up is to pray that the official results match the unofficial results. Thank you everyone for your prayers - this is just the beginning and there is a long road left but with your continued prayers we will be able to travel it. You can read the rest of the update I had written below
Most of my updates lately have been late at night after getting the kids to bed but I thought I'd try to get this one out a little earlier today.
I woke Nathan up at 11:30pm last night in order to give him some food as he had to fast after midnight. He had a couple of bowls of yogurt and we hoped that would tie home over til morning. Guess what? It did not! He was up again at 4:30am looking for some food and without that snack to get him back to bed he and Shelley ended up getting up for the day. Talk about your early start. They kept busy figuring out what to take for lunch after Nathan's procedure. They woke me up shortly before 7am because they really didn't want to be late for our appointment today. We also woke Carter up as he said that he wanted to come and Nathan really wanted to show Carter where Nathan's been going for treatment. So on a frosty -34 day we all headed off to the Cancer Center at 8am.
While we were waiting to see the nurses Carter and Nathan played a lot of Nintendo DS games since they have recently received a bunch of new ones. We finally got to go into the room to get Nathan's port accessed and we thought, finally we are under way, but wouldn't you know nothing ever goes as smooth as planned. They could not get blood out of Nathan's port no matter what they tried. Their guess was that the steroid caused a buildup of protein molecules at the end of the catheter in his vein. It acts kind of like a plumbers flap as they could put fluid in through the port but when they tried to suck fluid out the flap closes tight. They ended up giving Nathan another medicine that tries to dissolve that port protein flap. They also decided that he looked good enough to go ahead with the procedure without the results of a blood test and that they would try to draw blood again when he was under. So shortly before 10am he went in for his biopsy, aspiration and lumbar puncture.
The next issues were again unexpected. The needle for the LP was too short to be able to get into the spinal fluid. It was the same size needle they had used every other time but since Nathan had gained so much weight that needle was no longer big enough. So a second hole with a second needle was needed to put the chemo drug into his spinal fluid. And then similarly with the biopsy, Dr Ali did not want to go through the previous spot as it wasn't quite healed yet from two weeks ago so he created a new site beside it. That means that Nathan came out with a few extra holes but nothing major to worry about.
Evidently Shelley and Nathan did not pack enough for Nathan's lunch as he powered through a thermos full of yogurt and a thermos full of soup and was still ravenously hungry. That caused a few more anxious moments as we had to wait for Dr Ali to check Nathan over but we really NEEDED more food and needed it NOW! Nathan did well while Dr Ali checked him out but he did keep asking when we could go home to eat. Nathan did check out well and Dr Ali did refer to him as a slow early responder so it appears that Dr Ali is expecting a good result. And, the nurses, Jan and Kathy, were really good as they snuck Nathan some Doritos and even though he didn't eat them it made him feel better to have some food in his hands. Dr Ali was also really impressed with Carter accompanying his brother today, he thought that it was especially nice of Carter.
We did get the first results back from his blood test and they were encouraging. His white blood count (WBC) was up to 3.85 (5 is normal) and his platelets were way up to 205 which is back in the normal range. His red blood count was up as well but his Hemoglobin was not, it was still around 71 which explains the still tired behaviour. We will not get the results from his biopsy until next Monday the 29th - still hoping and praying for less than 5%. Also, they took out additional bone marrow and it is flying to Columbus, Ohio today to get the MRD test done on it. Those results should also be ready on the 29th. Just a reminder, that even if the blast count is less than 5%, if we are MRD positive then we may still require an Extended Induction phase.
Our next trip into the Cancer Clinic will then be on Monday the 29th for a physical exam for Nathan and then to discuss what the next series of treatments will be under the clinical trial Nathan is in. One other thing was reaffirmed to us today - we are very lucky to be living in Saskatoon. We met a couple of other families at the Clinic today that are driving in from hours away. They definitely have the travel part a little tougher than we do. And other centers such as Lloydminister do not even have anyone with experience of accessing a port. One mother indicated she had to do it which she preferred over someone who had never done it before. We are very fortunate that Nathan was treated quickly and by wonderful staff at the Cancer Center and are thankful to be living in Saskatoon.
NATHAN IS unofficially IN REMISSION!!
The unofficial blast count was 1.6% - and the reason it is unofficial is because the lab has phoned the initial results in to the Clinic. They will finish the testing, the double checking and writing the official results up and we will still get those official results next week. Next up is to pray that the official results match the unofficial results. Thank you everyone for your prayers - this is just the beginning and there is a long road left but with your continued prayers we will be able to travel it. You can read the rest of the update I had written below
Most of my updates lately have been late at night after getting the kids to bed but I thought I'd try to get this one out a little earlier today.
I woke Nathan up at 11:30pm last night in order to give him some food as he had to fast after midnight. He had a couple of bowls of yogurt and we hoped that would tie home over til morning. Guess what? It did not! He was up again at 4:30am looking for some food and without that snack to get him back to bed he and Shelley ended up getting up for the day. Talk about your early start. They kept busy figuring out what to take for lunch after Nathan's procedure. They woke me up shortly before 7am because they really didn't want to be late for our appointment today. We also woke Carter up as he said that he wanted to come and Nathan really wanted to show Carter where Nathan's been going for treatment. So on a frosty -34 day we all headed off to the Cancer Center at 8am.
While we were waiting to see the nurses Carter and Nathan played a lot of Nintendo DS games since they have recently received a bunch of new ones. We finally got to go into the room to get Nathan's port accessed and we thought, finally we are under way, but wouldn't you know nothing ever goes as smooth as planned. They could not get blood out of Nathan's port no matter what they tried. Their guess was that the steroid caused a buildup of protein molecules at the end of the catheter in his vein. It acts kind of like a plumbers flap as they could put fluid in through the port but when they tried to suck fluid out the flap closes tight. They ended up giving Nathan another medicine that tries to dissolve that port protein flap. They also decided that he looked good enough to go ahead with the procedure without the results of a blood test and that they would try to draw blood again when he was under. So shortly before 10am he went in for his biopsy, aspiration and lumbar puncture.
The next issues were again unexpected. The needle for the LP was too short to be able to get into the spinal fluid. It was the same size needle they had used every other time but since Nathan had gained so much weight that needle was no longer big enough. So a second hole with a second needle was needed to put the chemo drug into his spinal fluid. And then similarly with the biopsy, Dr Ali did not want to go through the previous spot as it wasn't quite healed yet from two weeks ago so he created a new site beside it. That means that Nathan came out with a few extra holes but nothing major to worry about.
Evidently Shelley and Nathan did not pack enough for Nathan's lunch as he powered through a thermos full of yogurt and a thermos full of soup and was still ravenously hungry. That caused a few more anxious moments as we had to wait for Dr Ali to check Nathan over but we really NEEDED more food and needed it NOW! Nathan did well while Dr Ali checked him out but he did keep asking when we could go home to eat. Nathan did check out well and Dr Ali did refer to him as a slow early responder so it appears that Dr Ali is expecting a good result. And, the nurses, Jan and Kathy, were really good as they snuck Nathan some Doritos and even though he didn't eat them it made him feel better to have some food in his hands. Dr Ali was also really impressed with Carter accompanying his brother today, he thought that it was especially nice of Carter.
We did get the first results back from his blood test and they were encouraging. His white blood count (WBC) was up to 3.85 (5 is normal) and his platelets were way up to 205 which is back in the normal range. His red blood count was up as well but his Hemoglobin was not, it was still around 71 which explains the still tired behaviour. We will not get the results from his biopsy until next Monday the 29th - still hoping and praying for less than 5%. Also, they took out additional bone marrow and it is flying to Columbus, Ohio today to get the MRD test done on it. Those results should also be ready on the 29th. Just a reminder, that even if the blast count is less than 5%, if we are MRD positive then we may still require an Extended Induction phase.
Our next trip into the Cancer Clinic will then be on Monday the 29th for a physical exam for Nathan and then to discuss what the next series of treatments will be under the clinical trial Nathan is in. One other thing was reaffirmed to us today - we are very lucky to be living in Saskatoon. We met a couple of other families at the Clinic today that are driving in from hours away. They definitely have the travel part a little tougher than we do. And other centers such as Lloydminister do not even have anyone with experience of accessing a port. One mother indicated she had to do it which she preferred over someone who had never done it before. We are very fortunate that Nathan was treated quickly and by wonderful staff at the Cancer Center and are thankful to be living in Saskatoon.
Monday, December 22, 2008
Day 28 Update
Woohoo! Last day, of 28 straight days, of Nathan's steroid Dexamethasone and we are hoping for some changes. Yes, we know they will take some time but as with everything, as long as we are progressing at least there is something to look forward to and hope for. Right now we are hoping for more sleep and less appetite, as well as a miracle cure for Christmas, but we'd take just the first two. Last night Nathan and Shelley were up from 3-5am having snacks: two bows of mac and cheese; followed by a bowl of mashed potatoes and peas; and then a bowl of yogurt just to fill in the gaps! But at least he went back to bed after that. Tonight he has to fast before his procedure tomorrow so once again, it will be a challenge to get him to go back to bed without a snack. Too bad they didn't make those steroids end a day earlier! Yes, we know it's not instant but we can still hope.
And in bed is where a surprise found some of us today. I was up with Justin when the phone rang. It was Marc Michaels from Wired 96.3 FM in Saskatoon informing me that we had been chosen for the Wired Christmas Wish of the day. Nathan got up while I was on the phone with the morning DJs. Then they informed me that a couple of elves were standing outside (in -32C weather) ready to deliver gifts. I opened up the door and a couple of wonderful people from Wired 96.3 brought in a bunch of gifts for the boys and some gift certificates for Shelley and I for food and gas. What a wonderful surprise, but the part that made it wonderful was seeing Nathan sitting there when these two folks came in and he was smiling and giggling and saying "oh boy, more presents" - now that is what Christmas is supposed to be for a child. Oh, and true to Christmas, Shelley and Carter got up when they heard the elves come in and the excitement in the air. So here is a more public thanks to the elves that made this happen; Johanne, Jared, Peter and Helen from my work. Sister-in-law Lorrie informed me later that her girlfriends at work had also submitted us for the wish of the day. And evidently it was played quite a few times during the day as a number of people phoned us to let us know that they had heard it.
We also would like to thank everyone for what has seemed like a steady stream of Christmas gifts and holiday cheer for the boys. From my family yesterday to the Christmas Wish delivery and further to all the friends that have stopped by, the kids are really getting the spirit. A heartfelt thanks once again to everyone.
After that Nathan continued to have a good day. He was upbeat for the majority of the day and was a little more talkative than the past week. He was also getting up and going places more often without asking for assistance. He still needed us to go wherever he went but at least we could walk beside him instead of carrying him. He still has a pronounced limp but this is still great progress for us. Of course our man did have a couple of "carry-me" moments that his Mom and Dad were more than willing to oblige.
Nathan and I had a rest this afternoon that was pretty good as well. As he was laying down on the couch and I was resting on the love seat he said "it would be alright if you cuddled with me" and as I hadn't got that permission very much lately I jumped at the chance and had a nice half hour nap with our boy. Not a bad afternoon.
Tomorrow morning is Clinic day. We need to be there by 8:30 for blood tests and then we will have to wait for the results before they can proceed. He has a bone marrow aspiration, bone marrow biopsy and lumbar puncture tomorrow. They will be taking extra bone out this time in order to send to the States for the MRD tests. It has the makings of being there for a full day but hopefully we will be out of there around noon.
Just to illustrate that our lives are a little normal right now... the kids have asked every day, ten times a day, if they can open some of their gifts. Shelley and I have relented and let them open a couple but we are making them wait to open most of them on Christmas morning. Only two more days of pestering! Funny how the pestering is actually a nice thing this year.
And in bed is where a surprise found some of us today. I was up with Justin when the phone rang. It was Marc Michaels from Wired 96.3 FM in Saskatoon informing me that we had been chosen for the Wired Christmas Wish of the day. Nathan got up while I was on the phone with the morning DJs. Then they informed me that a couple of elves were standing outside (in -32C weather) ready to deliver gifts. I opened up the door and a couple of wonderful people from Wired 96.3 brought in a bunch of gifts for the boys and some gift certificates for Shelley and I for food and gas. What a wonderful surprise, but the part that made it wonderful was seeing Nathan sitting there when these two folks came in and he was smiling and giggling and saying "oh boy, more presents" - now that is what Christmas is supposed to be for a child. Oh, and true to Christmas, Shelley and Carter got up when they heard the elves come in and the excitement in the air. So here is a more public thanks to the elves that made this happen; Johanne, Jared, Peter and Helen from my work. Sister-in-law Lorrie informed me later that her girlfriends at work had also submitted us for the wish of the day. And evidently it was played quite a few times during the day as a number of people phoned us to let us know that they had heard it.
We also would like to thank everyone for what has seemed like a steady stream of Christmas gifts and holiday cheer for the boys. From my family yesterday to the Christmas Wish delivery and further to all the friends that have stopped by, the kids are really getting the spirit. A heartfelt thanks once again to everyone.
After that Nathan continued to have a good day. He was upbeat for the majority of the day and was a little more talkative than the past week. He was also getting up and going places more often without asking for assistance. He still needed us to go wherever he went but at least we could walk beside him instead of carrying him. He still has a pronounced limp but this is still great progress for us. Of course our man did have a couple of "carry-me" moments that his Mom and Dad were more than willing to oblige.
Nathan and I had a rest this afternoon that was pretty good as well. As he was laying down on the couch and I was resting on the love seat he said "it would be alright if you cuddled with me" and as I hadn't got that permission very much lately I jumped at the chance and had a nice half hour nap with our boy. Not a bad afternoon.
Tomorrow morning is Clinic day. We need to be there by 8:30 for blood tests and then we will have to wait for the results before they can proceed. He has a bone marrow aspiration, bone marrow biopsy and lumbar puncture tomorrow. They will be taking extra bone out this time in order to send to the States for the MRD tests. It has the makings of being there for a full day but hopefully we will be out of there around noon.
Just to illustrate that our lives are a little normal right now... the kids have asked every day, ten times a day, if they can open some of their gifts. Shelley and I have relented and let them open a couple but we are making them wait to open most of them on Christmas morning. Only two more days of pestering! Funny how the pestering is actually a nice thing this year.
Sunday, December 21, 2008
Day 27 Update
Saturday night was a decent night for Nathan. He got up once early (thankfully before I went to bed) and then not again until about 4am. He actually went to the bathroom by himself, which was great that he walked to the bathroom himself, but then he had to come wake us up to tell us that he did go without help. Ah well, we'll take those kind of improvements as they come.
My family invaded our house today for a Christmas celebration and Nathan handled it pretty well. He got overwhelmed a few times and had to go find his own space but on the whole he participated pretty good. His eyes did light up when Santa Claus made an appearance - his little brother Justin froze up though. We thought Justin, also a tough guy, would have no problem with Santa but Justin just wouldn't let go of his mother for anything to do with Santa. Carter of course figured things out quickly but then did well to sit on his knee.
We had a great meal but Nathan stuck to the potatoes and peas. As I've said before, once that boy finds a food he likes he definitely sticks with it. Nathan's walking improved a little more today but he still found occasions to be carried rather than having to walk. His mouth ulcers still hurt today - when he tried a couple of different foods it really hurt and caused a couple of crying fits because of the pain. And last, but not least, only one more day of steroids! We all are really looking forward to that!
It is amazing to realize that in a few short weeks, it seems like the little boy who used to bounce around the house and be told to slow down, now is quietly sitting and contemplating everything. It seems like he has grown up beyond the 5 years he should be. For example, he received a Lightning McQueen comforter from his aunties for his new room and after a while looked at his mother and quietly said, "My new room will be far from the kitchen." He was gently reminded that when we move he won't be eating during the night like now, so not to worry. Or when Justin is being mischievous, he points out to Justin that he shouldn't behave that way. Not long ago Nathan would have been the one to join in with Justin. Nathan has taken a strong interest in assisting in any way he can in the kitchen and it makes him feel good to help. Usually change is slow and gradual and goes unnoticed until you stop and realize there has been a change. But these days, it seems to be pretty fast, and extremely noticeable. We are hoping Nathan is reserving his spunk and energy for internal healing and pray that one day he will be the 5 year old planning with his friends what to play next.
My family invaded our house today for a Christmas celebration and Nathan handled it pretty well. He got overwhelmed a few times and had to go find his own space but on the whole he participated pretty good. His eyes did light up when Santa Claus made an appearance - his little brother Justin froze up though. We thought Justin, also a tough guy, would have no problem with Santa but Justin just wouldn't let go of his mother for anything to do with Santa. Carter of course figured things out quickly but then did well to sit on his knee.
We had a great meal but Nathan stuck to the potatoes and peas. As I've said before, once that boy finds a food he likes he definitely sticks with it. Nathan's walking improved a little more today but he still found occasions to be carried rather than having to walk. His mouth ulcers still hurt today - when he tried a couple of different foods it really hurt and caused a couple of crying fits because of the pain. And last, but not least, only one more day of steroids! We all are really looking forward to that!
It is amazing to realize that in a few short weeks, it seems like the little boy who used to bounce around the house and be told to slow down, now is quietly sitting and contemplating everything. It seems like he has grown up beyond the 5 years he should be. For example, he received a Lightning McQueen comforter from his aunties for his new room and after a while looked at his mother and quietly said, "My new room will be far from the kitchen." He was gently reminded that when we move he won't be eating during the night like now, so not to worry. Or when Justin is being mischievous, he points out to Justin that he shouldn't behave that way. Not long ago Nathan would have been the one to join in with Justin. Nathan has taken a strong interest in assisting in any way he can in the kitchen and it makes him feel good to help. Usually change is slow and gradual and goes unnoticed until you stop and realize there has been a change. But these days, it seems to be pretty fast, and extremely noticeable. We are hoping Nathan is reserving his spunk and energy for internal healing and pray that one day he will be the 5 year old planning with his friends what to play next.
Saturday, December 20, 2008
Day 26 Update
This morning was another new adventure. Nathan got up a few times in the night to go to the washroom then he woke up about 4am feeling a little peckish. His wonderful mother got up and made up macaroni and cheese but that didn't fill the spot. So he had a couple of bowls of yogurt, that was better but still not quite doing it. So, of course, he had to have a plate of potatoes and peas to fill in the gaps. Well, eating like that at 4am sure doesn't make for one to be tired afterwards so after discussing it with Shelley until 5 am those two decided to get up for the day. They were up for awhile and started to get things done. Made some coffee for mom, poached eggs and sausage for Nathan and played some cards and drew some pictures to pass the time. I got up about 7:30am to see if I could get in on the action! I actually chased Shelley back to bed and Nathan decided he could lay down again too. While I was contemplating what I should do Justin woke up and figured it out for me - play with Justin and keep him quiet. Carter got up at around 8:30 to join Justin and I, Nathan managed to stay in bed til 9am and Shelley until shortly after 11am. What a way to spend a morning!
Nathan has paused a few times in the mirrors the past two days and Shelley finally asked him today if he had trouble recognizing himself. Nathan immediately started crying as he didn't recognize the chubby face and big body in the mirror. He has become very self-conscious of both his appearance and his weight. It was hard explaining to a five year old that he will wear all that excess weight off to get back to normal and that it was just the steroids that made him like that. After a talk like that do you think he wanted to keep taking his steroids?! He has been good though and does take his medication faithfully, even reminding Shelley and I if we forget. The funny part is that sometimes he reminds us that it's time but then does not want to take it. [and here was a great example - Shelley and I forgot to give Nathan his magic mouthwash before bed. Nathan just woke up (11pm) to go to the washroom and while he was in there he asked "don't I have to take my swish and spit?" And so we just did it]
Following up on our good news story from yesterday is that Nathan's walking is even better today. He started walking by himself now without us holding him or his hands. He still wants us to accompany him but he is walking on his own, albeit with a pronounced limp. To me this is a great sign as it means that the blasts must be down in his marrow and that our Gold Standard Day 29 is looking promising.
Tomorrow (Sunday) most of my family is coming in to celebrate Christmas with the boys and us. Hopefully Nathan gets a good rest and has a good day tomorrow!
Nathan has paused a few times in the mirrors the past two days and Shelley finally asked him today if he had trouble recognizing himself. Nathan immediately started crying as he didn't recognize the chubby face and big body in the mirror. He has become very self-conscious of both his appearance and his weight. It was hard explaining to a five year old that he will wear all that excess weight off to get back to normal and that it was just the steroids that made him like that. After a talk like that do you think he wanted to keep taking his steroids?! He has been good though and does take his medication faithfully, even reminding Shelley and I if we forget. The funny part is that sometimes he reminds us that it's time but then does not want to take it. [and here was a great example - Shelley and I forgot to give Nathan his magic mouthwash before bed. Nathan just woke up (11pm) to go to the washroom and while he was in there he asked "don't I have to take my swish and spit?" And so we just did it]
Following up on our good news story from yesterday is that Nathan's walking is even better today. He started walking by himself now without us holding him or his hands. He still wants us to accompany him but he is walking on his own, albeit with a pronounced limp. To me this is a great sign as it means that the blasts must be down in his marrow and that our Gold Standard Day 29 is looking promising.
Tomorrow (Sunday) most of my family is coming in to celebrate Christmas with the boys and us. Hopefully Nathan gets a good rest and has a good day tomorrow!
Friday, December 19, 2008
Day 25 Update
My kingdom for some sleep! I'm sure Shelley would sell her half for some sleep as well. We are both feeling a little run down with the lack of sleep for weeks now but we are both really looking forward to Monday night when the steroids are done. It will take a few days to a week but we are hoping that Nathan's sleep patterns get back to normal. This business of waking up upwards of ten times a night is getting old fast. Both Shelley and I try to get the occasional afternoon nap but it never happens often enough or for long enough (or together enough ;-).
All that said, we have some real good news to share today. Nathan has started walking more and walking better. The past few days his walking was all hop step while holding our hands for support with him putting little to no weight on his right leg but today he was walking much more normal. He had a flatter right foot and even tried a few steps all on his own. He wasn't able to do more than two steps but he is now able to walk holding only one of my hands. This is especially great news as both Shelley and my backs were getting real sore from carrying our big guy.
Nathan, again very grudgingly, stayed home with Grandma Elsie while Shelley and I went to Carter's Christmas music recital. It is still quite the issue for us to leave but he is doing much better while we are away. I'm not sure what was going on but Nathan was into a pink and purple period this evening. He sat at the table for 2 hours and coloured paper all pinks and purples. Some all pink, some all purple and some mixed with both. There must be over a dozen pages with that new motif.
Looking forward to sleeping in in the morning so please no early phone calls....
All that said, we have some real good news to share today. Nathan has started walking more and walking better. The past few days his walking was all hop step while holding our hands for support with him putting little to no weight on his right leg but today he was walking much more normal. He had a flatter right foot and even tried a few steps all on his own. He wasn't able to do more than two steps but he is now able to walk holding only one of my hands. This is especially great news as both Shelley and my backs were getting real sore from carrying our big guy.
Nathan, again very grudgingly, stayed home with Grandma Elsie while Shelley and I went to Carter's Christmas music recital. It is still quite the issue for us to leave but he is doing much better while we are away. I'm not sure what was going on but Nathan was into a pink and purple period this evening. He sat at the table for 2 hours and coloured paper all pinks and purples. Some all pink, some all purple and some mixed with both. There must be over a dozen pages with that new motif.
Looking forward to sleeping in in the morning so please no early phone calls....
Thursday, December 18, 2008
Day 24 Update
Nathan had a very sleepless night, more so than usual. His Mom and Dad were both up a lot and did not get much sleep. So after a night like that we expected a low energy day but that was not the case today. Nathan woke up hungry as usual: he had a yogurt to whet his appetite for breakfast; then he had 4 eggs and 2 pieces of toast because he was hungry for eggs; but that didn't quite fill him so he had big bowl of chicken noodle soup. After that he decided that was enough and he was just full for now. It is amazing to watch!
The rest of his day was as usual as our usual gets. He tried to walk more today, which is still a hop and a step while holding our hands but at least he was trying. We didn't get far most times but we tried at least a half dozen times and that was wonderful to see. He had his laugh back a little more and his teasing attitude. He did grudgingly, and not without guilting us, let Shelley and I go out shopping today while he stayed home with Grandma and Grandpa. I would like to share this chuckle today as it did make Grandpa laugh... I told Nathan that he had to give me a good reason to keep Mom and I at home instead of staying with G & G. He thought for a bit and told me "Grandma and Grandpa are old." I agreed that they were :-) but what did that matter. Then he said "but I hate old people!" Grandpa laughed and I chuckled as we all know that he loves his grandparents but the things that kids will say to try to get there way can take you by surprise!
I'd also like to thank Tracy for making a house hair cut call today. Nathan was getting quite shaggy and Tracy came and trimmed him up. His new haircut really makes his chubby cheeks stand out, but it is nice to see him clean cut again.
Terri and Megan stopped in with a superhero surprise for Nathan - a build a bear batman. He was quite happy with him.
Once again we are greatful to all the people in our lives who have touched us during this challenging time. God bless.
The rest of his day was as usual as our usual gets. He tried to walk more today, which is still a hop and a step while holding our hands but at least he was trying. We didn't get far most times but we tried at least a half dozen times and that was wonderful to see. He had his laugh back a little more and his teasing attitude. He did grudgingly, and not without guilting us, let Shelley and I go out shopping today while he stayed home with Grandma and Grandpa. I would like to share this chuckle today as it did make Grandpa laugh... I told Nathan that he had to give me a good reason to keep Mom and I at home instead of staying with G & G. He thought for a bit and told me "Grandma and Grandpa are old." I agreed that they were :-) but what did that matter. Then he said "but I hate old people!" Grandpa laughed and I chuckled as we all know that he loves his grandparents but the things that kids will say to try to get there way can take you by surprise!
I'd also like to thank Tracy for making a house hair cut call today. Nathan was getting quite shaggy and Tracy came and trimmed him up. His new haircut really makes his chubby cheeks stand out, but it is nice to see him clean cut again.
Terri and Megan stopped in with a superhero surprise for Nathan - a build a bear batman. He was quite happy with him.
Once again we are greatful to all the people in our lives who have touched us during this challenging time. God bless.
Wednesday, December 17, 2008
Day 23 Update
Nathan had a pretty good night last night. He was up 3 or 4 times and Shelley made me get up with him the first three times so she got a pretty good sleep! (She must have really needed it.) Nathan woke up in great spirits this morning. He sat up on the stool in the kitchen and laughed and teased his Dad - something he hasn't done in awhile. He then had another very large breakfast and got tired of waiting for Dad in the dining room so he walked to the kitchen holding onto chairs and walls for support. That was great to see and we encouraged him to do more but that is about all we got. Nathan did quite a bit of homework today and played a lot of cards so all in all it was a pretty good day for him. Behind the chubby cheeks, it was nice to see some of our little Nathan. He is still in there although by appearance most of you who haven't seen him in a while wouldn't recognize him. Its hard to describe but I do believe that Nathan is listening to his body and it is telling him what he needs and when and is saving his energy for that.
Short update today as we are having a Zingo night!
Short update today as we are having a Zingo night!
Tuesday, December 16, 2008
Day 22 Update
Today we received good news, OK news and concerning news.
The good news is that today's blood work continued on its positive trend. His White Blood Cell (WBC) counts were up over 1.3 and he actually had measurable Neutrophils this time (1.03). Last test there were not enough to be measured. Dr Ali said it was encouraging that his WBC was mostly Neutrophils. His Red Blood Cell (RBC)
counts were also up as were his platelets. They are finally back over 100 at 118 (150 - 400 is normal range).
The OK news is that the story for an additional phase morphed again. Dr Ali referred to Day 29 as being the "gold standard" day where we need to be less than 5% blasts in order to move to the next phase (Consolidation) in the protocol. That we knew. However there are two other tests that we heard about for the first time today. As with treatments for most diseases, they are getting more and more sophisticated as they learn more about the diseases, and Leukemia is no different. They now have the ability to subtype (Nathan is precursor B) ALL and subtype the subtypes. This is to try to get the optimum treatment: you don't want to over treat with chemotherapy or you can cause further issues; and obviously you don't want to under treat and have it recur. Again, the bone marrow biopsy is checking the amount of blasts in the cells where the blood is created. Now they are also checking the chromosomes of those cells. They determine how the cells are formed. They have already submitted cells for chromosomal evaluation but we don't have that test back yet. The last test they do now is a cellular check of the bone marrow on the Day 29 biopsy looking for malignant cells; this test is called Minimal Residual Disease (MRD). If there is less than .01% malignant cells then you are considered MRD negative, if greater than .01% then you are MRD positive. Those three sets of results taken together determine if we go into extended induction or not and which protocol and sets of medicine we take in the Consolidation phase.
The concerning news today was hearing Dr Ali say that he was worried about Nathan. Dr Ali has always said that he would be honest with us and we do appreciate that. He said that most kids do respond quicker than Nathan has. Their blasts go down quicker, the RBC and WBC come up faster and they are usually back to normal activity by week 3. That slow response taken with his continued inability to walk makes Dr Ali worried about the progress we are making. His assumption is that those last 13% of blasts is what is still causing the bone pain. He did allay our immediate adverse reaction to this by saying that no matter what we will be able to get this under control. Looks like we are still in need of prayers....
Otherwise Nathan has had a pretty decent day. We were very lethargic in the doctor's office but that may have been partially Nathan pretending to sleep to see if everyone at the Clinic would just go away. Unfortunately for Nathan he still got a full exam today from Dr Ali. Nurse Jan did chuckle this morning that it was the first time she accessed a port in a sleeping patient! Nathan was also a model this morning. Dr Ali wanted a picture of Nathan's stance to use a teaching tool for other doctors (both established and new) to try to get them to think of more than breaks, sprains and strains when a child comes in complaining about foot, leg or bone pain and has that particular stance to make sure the diagnoses can happen as quick as possible for the child's sake. Some kids take way longer to get diagnosed than Nathan did and end up with much more pain than him before they get into treatment and that would be horrible to watch as a parent.
And as usual, Nathan has eaten a ton today but has still complained about a sore mouth most of the time. We would like to thank everyone for their suggestions and we certainly are going to follow up on them. The suggestions we have to date are swishing with baking soda after meals, adding Acidophilus to yogurt to get the right bacteria balance and trying Glutamine supplements to increase his mucous lining and help prevent sores. If anyone has anything to add to these or suggest others please contact us.
Our funny story for today happened at the Cancer Clinic with Dr Ali. We were having our serious talk when Nathan announced that he had to go to the bathroom. I got up to take him and Dr Ali stated that he would wait til I got back before he continued. That left he and Shelley sitting in the room together in some awkward silence. Dr Ali mentioned off hand that it is hard to be a parent. Shelley agreed and in doing so teared up. Dr Ali immediately got up, opened the door and asked a nurse to come in (with tissues) and sit in my spot with Shelley. She stayed there until I opened the door and then she immediately disappeared. It confused me until Shelley explained to me later. She thought it was funny that Dr Ali had to call in the recruits so fast. I've often told her that her tears are an unfair weapon in some of our discussions!
The good news is that today's blood work continued on its positive trend. His White Blood Cell (WBC) counts were up over 1.3 and he actually had measurable Neutrophils this time (1.03). Last test there were not enough to be measured. Dr Ali said it was encouraging that his WBC was mostly Neutrophils. His Red Blood Cell (RBC)
counts were also up as were his platelets. They are finally back over 100 at 118 (150 - 400 is normal range).
The OK news is that the story for an additional phase morphed again. Dr Ali referred to Day 29 as being the "gold standard" day where we need to be less than 5% blasts in order to move to the next phase (Consolidation) in the protocol. That we knew. However there are two other tests that we heard about for the first time today. As with treatments for most diseases, they are getting more and more sophisticated as they learn more about the diseases, and Leukemia is no different. They now have the ability to subtype (Nathan is precursor B) ALL and subtype the subtypes. This is to try to get the optimum treatment: you don't want to over treat with chemotherapy or you can cause further issues; and obviously you don't want to under treat and have it recur. Again, the bone marrow biopsy is checking the amount of blasts in the cells where the blood is created. Now they are also checking the chromosomes of those cells. They determine how the cells are formed. They have already submitted cells for chromosomal evaluation but we don't have that test back yet. The last test they do now is a cellular check of the bone marrow on the Day 29 biopsy looking for malignant cells; this test is called Minimal Residual Disease (MRD). If there is less than .01% malignant cells then you are considered MRD negative, if greater than .01% then you are MRD positive. Those three sets of results taken together determine if we go into extended induction or not and which protocol and sets of medicine we take in the Consolidation phase.
The concerning news today was hearing Dr Ali say that he was worried about Nathan. Dr Ali has always said that he would be honest with us and we do appreciate that. He said that most kids do respond quicker than Nathan has. Their blasts go down quicker, the RBC and WBC come up faster and they are usually back to normal activity by week 3. That slow response taken with his continued inability to walk makes Dr Ali worried about the progress we are making. His assumption is that those last 13% of blasts is what is still causing the bone pain. He did allay our immediate adverse reaction to this by saying that no matter what we will be able to get this under control. Looks like we are still in need of prayers....
Otherwise Nathan has had a pretty decent day. We were very lethargic in the doctor's office but that may have been partially Nathan pretending to sleep to see if everyone at the Clinic would just go away. Unfortunately for Nathan he still got a full exam today from Dr Ali. Nurse Jan did chuckle this morning that it was the first time she accessed a port in a sleeping patient! Nathan was also a model this morning. Dr Ali wanted a picture of Nathan's stance to use a teaching tool for other doctors (both established and new) to try to get them to think of more than breaks, sprains and strains when a child comes in complaining about foot, leg or bone pain and has that particular stance to make sure the diagnoses can happen as quick as possible for the child's sake. Some kids take way longer to get diagnosed than Nathan did and end up with much more pain than him before they get into treatment and that would be horrible to watch as a parent.
And as usual, Nathan has eaten a ton today but has still complained about a sore mouth most of the time. We would like to thank everyone for their suggestions and we certainly are going to follow up on them. The suggestions we have to date are swishing with baking soda after meals, adding Acidophilus to yogurt to get the right bacteria balance and trying Glutamine supplements to increase his mucous lining and help prevent sores. If anyone has anything to add to these or suggest others please contact us.
Our funny story for today happened at the Cancer Clinic with Dr Ali. We were having our serious talk when Nathan announced that he had to go to the bathroom. I got up to take him and Dr Ali stated that he would wait til I got back before he continued. That left he and Shelley sitting in the room together in some awkward silence. Dr Ali mentioned off hand that it is hard to be a parent. Shelley agreed and in doing so teared up. Dr Ali immediately got up, opened the door and asked a nurse to come in (with tissues) and sit in my spot with Shelley. She stayed there until I opened the door and then she immediately disappeared. It confused me until Shelley explained to me later. She thought it was funny that Dr Ali had to call in the recruits so fast. I've often told her that her tears are an unfair weapon in some of our discussions!
Monday, December 15, 2008
Day 21 Update
It was a cold and frigid day... I'm running out of opening lines other than "Nathan had a good day today". Well I guess it was a good day but there are still some worrisome issues. Nathan still refuses to walk because of the pain of standing on his legs. The concern is that the pain should be gone with only 13% blasts and low white blood cell, red blood cell and platelet counts. There should no longer be an excess of cells causing the bone pain. We keep working at it though and he did do some "exercises" on the floor today. Trying to convince him that he needs to keep his body moving more than from the couch to the kitchen to the table... I'm getting a bad premonition of him being 30 years old and living with his parents and all he does is lay on the couch, raid the kitchen and eat at the table! Actually right now that doesn't sound too bad.
Nathan did mention this morning to his mother that he missed his friends. We told him we'd try to make a play date for later, however when we tried to follow up later in the afternoon he was too tired to be interested. He did sit at the table though and draw pictures for friends and family since his friends had all drawn him a picture. After supper Nathan did manage to work his puppy dog voice on Auntie Pam again and Ella came over for a visit while Johnathan and Carter were playing hockey.
And of course, what is a day without a food story. I think this might have been one of his highest volume days. For his breakfasts he had by three poached eggs (one of which was supposed to be his Dads)followed by chicken noodle soup. Lunch was chili, soup and yogurt. Afternoon snack consisted of Rice Crisps and Boursin cheese. And supper was soup followed by evening snack of chili and yogurt. When Nathan finds something that works for him, he doesn't like to change or switch it up. Nathan has layed right off fruit which in thinking about it, is a good thing as they are high in sugar. With the sores being so bad we aren't able to get into his mouth to brush. Shelley has one of the finger cloths you use on babies gums so will try that tomorrow. We did try a new drink for Nathan as he seems to only want milk - Pediasure mixed with ice cream. This will provide him a little more protein to fill that hunger void.
One milestone of the evening was Nathan telling his mother tonight that she was right. When asked what she was right about he indicated his cheek wasn't as sore so must be getting better. She was right that the medication he hated taking was helping to get rid of the sores. Shelley is glad this is in writing for the days he is a teenager and thinks parents aren't "right":) In all seriousness though, Nathan increased his intake of yogurt which when you have mouth thrush is said to be a natural cure as it has the good bacteria that is needed to fight the bad. So who knows which is working more for him. We were just happy to hear him say his mouth wasn't as sore.
We continue to pray each day and are very grateful to all the friends and family that support us with their actions and their prayers.
Nathan did mention this morning to his mother that he missed his friends. We told him we'd try to make a play date for later, however when we tried to follow up later in the afternoon he was too tired to be interested. He did sit at the table though and draw pictures for friends and family since his friends had all drawn him a picture. After supper Nathan did manage to work his puppy dog voice on Auntie Pam again and Ella came over for a visit while Johnathan and Carter were playing hockey.
And of course, what is a day without a food story. I think this might have been one of his highest volume days. For his breakfasts he had by three poached eggs (one of which was supposed to be his Dads)followed by chicken noodle soup. Lunch was chili, soup and yogurt. Afternoon snack consisted of Rice Crisps and Boursin cheese. And supper was soup followed by evening snack of chili and yogurt. When Nathan finds something that works for him, he doesn't like to change or switch it up. Nathan has layed right off fruit which in thinking about it, is a good thing as they are high in sugar. With the sores being so bad we aren't able to get into his mouth to brush. Shelley has one of the finger cloths you use on babies gums so will try that tomorrow. We did try a new drink for Nathan as he seems to only want milk - Pediasure mixed with ice cream. This will provide him a little more protein to fill that hunger void.
One milestone of the evening was Nathan telling his mother tonight that she was right. When asked what she was right about he indicated his cheek wasn't as sore so must be getting better. She was right that the medication he hated taking was helping to get rid of the sores. Shelley is glad this is in writing for the days he is a teenager and thinks parents aren't "right":) In all seriousness though, Nathan increased his intake of yogurt which when you have mouth thrush is said to be a natural cure as it has the good bacteria that is needed to fight the bad. So who knows which is working more for him. We were just happy to hear him say his mouth wasn't as sore.
We continue to pray each day and are very grateful to all the friends and family that support us with their actions and their prayers.
Sunday, December 14, 2008
Day 20 Update
Well you'd think Shelley and I would be a little smarter by now but sometimes we make us wonder... Last night we decided we should try for a little normalcy and have our Saturday evening movie night instead of going to bed early. Fair enough, we watched a movie and went to bed shortly after midnight. I do remember having trouble falling asleep and seeing 1am roll around. Then right after that Nathan got up. He stayed up snacking on yogurt and went back to bed about 4 with Dad sleeping with him. I stayed there til 5:30 when Justin woke me up. Got him back down and went back to our bed to have a solid sleep until 8am. Shelley had been up with Nathan for the majority of the night and then got up with Justin for the day shortly after 7. We were both tired today but are maybe getting used to functioning with no sleep. We will be heading to bed shortly...
I mentioned yesterday that Nathan loved the fish for supper, well he loved it so much that he had fish as breakfast number 1. He then asked me if I thought any of his cousins would go out to the cabin and catch him some more fish... well cousins??? The strange part was that for breakfast number 2 we made pancakes and he cried because they hurt his mouth. He had fish and potatoes without complaining but pancakes hurt to eat! It might have been the size or solidness of the swallowing hurting his throat but I got the mean Dad comment since I made him food he couldn't eat. So breakfast number 3 was chicken noodle soup and that went over well.
Nathan had a pretty decent day. He watched TV and then beat his Dad a bunch of times at UNO (his favourite card game). Carter and he then played DS together and his Auntie Lorrie was over for supper. Jodi, from Shelley's work, brought chili for supper tonight and Nathan loved it. Had a few helpings and then washed them down with 2 or 3 of Grandma's homemade buns. Chili was also the bedtime snack tonight, think he'll go the night without having to go to the bathroom? Not likely!
Carter, Johnathan and I got to go to a private screening of "A Side Show Christmas" tonight. The father of one of Carter's classmates was the director. The boys really liked the show, you can try to catch on Teletoon over the next week. Nathan was waiting for us when we got home (he wanted to go) in order to get the report. Nathan is starting to really miss playing with his friends. It has taken some time but cabin fever might be setting in. On a positive note, he is getting much better at doing his medicine now. We got tablets for one of the liquids he didn't like and the other swish and swallow we turned into a swish and spit and that goes over better with him.
We do not have to go to the Cancer Center tomorrow as his blood work from last week was so good. Tuesday is our Day 22 and he gets more bloodwork and chemo but no biopsy this week. That is fine by me since it is so darn cold out (-32C).
I mentioned yesterday that Nathan loved the fish for supper, well he loved it so much that he had fish as breakfast number 1. He then asked me if I thought any of his cousins would go out to the cabin and catch him some more fish... well cousins??? The strange part was that for breakfast number 2 we made pancakes and he cried because they hurt his mouth. He had fish and potatoes without complaining but pancakes hurt to eat! It might have been the size or solidness of the swallowing hurting his throat but I got the mean Dad comment since I made him food he couldn't eat. So breakfast number 3 was chicken noodle soup and that went over well.
Nathan had a pretty decent day. He watched TV and then beat his Dad a bunch of times at UNO (his favourite card game). Carter and he then played DS together and his Auntie Lorrie was over for supper. Jodi, from Shelley's work, brought chili for supper tonight and Nathan loved it. Had a few helpings and then washed them down with 2 or 3 of Grandma's homemade buns. Chili was also the bedtime snack tonight, think he'll go the night without having to go to the bathroom? Not likely!
Carter, Johnathan and I got to go to a private screening of "A Side Show Christmas" tonight. The father of one of Carter's classmates was the director. The boys really liked the show, you can try to catch on Teletoon over the next week. Nathan was waiting for us when we got home (he wanted to go) in order to get the report. Nathan is starting to really miss playing with his friends. It has taken some time but cabin fever might be setting in. On a positive note, he is getting much better at doing his medicine now. We got tablets for one of the liquids he didn't like and the other swish and swallow we turned into a swish and spit and that goes over better with him.
We do not have to go to the Cancer Center tomorrow as his blood work from last week was so good. Tuesday is our Day 22 and he gets more bloodwork and chemo but no biopsy this week. That is fine by me since it is so darn cold out (-32C).
Saturday, December 13, 2008
Day 19 Update
Another night, another party! Nathan, after having a nice quiet day, made sure his night made up for it. He was up from 1am til about 5am when he had his bowl of macaroni and broccoli after a couple yogurts. I managed to get a little sleep by heading off to Nathan's bed when Nathan headed to ours. But I was up with Justin before 7am while Nathan and Shelley then slept till almost 10am. Carter had a sleepover at his cousin's and enjoyed time on their hockey rink.
Nathan had a pretty good day overall today. His morning was spent working on activity books and colouring Christmas ornaments while Shelley was in the kitchen and Carter and I were off at Carter's hockey practice. After hockey, Nathan phoned his Auntie Pam to see if Johnathan and Ella could come visit. It was quite funny as Pam had just finished explaining to Johnathan that they couldn't stay to visit but the puppy dog voice of Nathan's had Pam then saying yes. It's hard to say no to him when he uses that pathetic little puppy dog voice. Cousins Johnathan and Ella were welcome visitors for Nathan. Although he didn't partake in the play he was happy to watch and to just have other children around. It was a little strange as Nathan was trying hard not to talk because it hurts his mouth so he was a very silent watcher - that is just not Nathan.
Since there wasn't much napping today, his parents are hopeful there will be minimal sleep interruptions tonight. One doesn't appreciate a full nights sleep until you no longer get it! Carter is doing well today! He finished his letter to Santa and helped Shelley decorate the tree.
The magic mouthwash that Nathan now has before meals must help a little with the pain in his mouth. Shelley made fish, potatoes and peas tonight and Nathan had 4 helpings. Carter managed to get two helpings in while Justin just threw food around!
Our funny story today to illustrate just how sore Nathan's mouth is and how much he tries not to smile happened while decorating the tree. I had made Shelley and I rum and egg nogs to get the festive spirit (and we really needed a drink). We had put our drinks on Nathan's tray in the living room. Carter was putting decorations together and Justin and his bear, baby, were banging the decorations that Carter had put upon the tree! I lifted Justin off of his chair and told him "No". He immediately pouted and plopped backwards onto the floor banging into, yes you guessed, the tray with the drinks. Shelley's drink fell towards Justin and poured down his head and back and onto the rug. Justin wasn't happy with that! Carter was laughing, Shelley and I were laughing so we didn't cry and Nathan sat on the couch just watching the whole show. Carter and Justin were playing on the couch - Carter would go on the couch and Justin would pull him off!
- Carter & Arron
Nathan had a pretty good day overall today. His morning was spent working on activity books and colouring Christmas ornaments while Shelley was in the kitchen and Carter and I were off at Carter's hockey practice. After hockey, Nathan phoned his Auntie Pam to see if Johnathan and Ella could come visit. It was quite funny as Pam had just finished explaining to Johnathan that they couldn't stay to visit but the puppy dog voice of Nathan's had Pam then saying yes. It's hard to say no to him when he uses that pathetic little puppy dog voice. Cousins Johnathan and Ella were welcome visitors for Nathan. Although he didn't partake in the play he was happy to watch and to just have other children around. It was a little strange as Nathan was trying hard not to talk because it hurts his mouth so he was a very silent watcher - that is just not Nathan.
Since there wasn't much napping today, his parents are hopeful there will be minimal sleep interruptions tonight. One doesn't appreciate a full nights sleep until you no longer get it! Carter is doing well today! He finished his letter to Santa and helped Shelley decorate the tree.
The magic mouthwash that Nathan now has before meals must help a little with the pain in his mouth. Shelley made fish, potatoes and peas tonight and Nathan had 4 helpings. Carter managed to get two helpings in while Justin just threw food around!
Our funny story today to illustrate just how sore Nathan's mouth is and how much he tries not to smile happened while decorating the tree. I had made Shelley and I rum and egg nogs to get the festive spirit (and we really needed a drink). We had put our drinks on Nathan's tray in the living room. Carter was putting decorations together and Justin and his bear, baby, were banging the decorations that Carter had put upon the tree! I lifted Justin off of his chair and told him "No". He immediately pouted and plopped backwards onto the floor banging into, yes you guessed, the tray with the drinks. Shelley's drink fell towards Justin and poured down his head and back and onto the rug. Justin wasn't happy with that! Carter was laughing, Shelley and I were laughing so we didn't cry and Nathan sat on the couch just watching the whole show. Carter and Justin were playing on the couch - Carter would go on the couch and Justin would pull him off!
- Carter & Arron
Friday, December 12, 2008
Day 18 Update
Yes I know not much time has passed between the day 17 update and now but we wanted to update everyone on the OK news we received today. We went in for a blood test today and Nathan's counts came back favourably. His white blood cells are still quite low but have come up a little at 0.48; his red blood cells and hemoglobin are both up at 2.92 and 84 respectively; and his platelets have come up to 98 which is a marked improvement. Shelley and I were guessing that Nathan needed red blood transfusion as his energy level was really low last night and again this morning but evidently he is just tired from all those early morning snack times.
Now for the more important news, we got back Nathan's blast count today from his bone marrow biopsy and it is down to 13%. So, no that is not less than 5% but it is still progressing the right way. Additionally, they corrected the misinformation they gave us last time. We had it right initially in that the Day 29 blast count is the one that determines if there is an extended induction phase. As long as Nathan keeps progressing they way he is then we should be less than 5% by Day 29 and therefore not require an extended induction phase. How it is classified is that Nathan is not a rapid early responder but he appears to be on his way to a slow early responder - the key is the early responder part. Being rapid would have been great but being slow still gets you to where you want to be - remission! Yah, it's early to use that word but we have to keep positive and with the amount of people we have praying for Nathan I'm sure we're going to get there.
What's an update without a food related story? The ulcers in Nathan's mouth are getting quite painful and so he is having trouble eating because anything that is a little firm or hard hurts. His middle of the night snack was a couple of yogurts last night as a sandwich was even too rough. Then this morning he tried cheerios which ruptured one of the ulcers leading to a fair bit of pain and blood. As you can imagine Shelley was quite calm during that ... or not. After that happened Nathan looked at all of the goodies on the counter that people have brought us and declared that the people who brought them were mean. Shelley and I looked at each other and asked Nathan why those people were mean? He explained that it wasn't nice that they brought all this good food that he likes but he isn't able to eat any and that's mean! We assured him that he would be able to eat it again but we've had to hide the goodies for now to make him feel better about it. But don't worry, his parents and brothers are making sure the goodies don't go to waste! When we inquired again about the ulcers today, Dr Mpofu gave Nathan a prescription for Magic Mouthwash (has the Nyastatin plus a topical anaesthetic) and said that the ulcers wouldn't go away until his white blood cells are back up so we have to deal with this for some time yet.
One final note about food, Shelley, the kids and I would like to genuinely thank everyone for their generosity in bringing frozen meals to us but our freezer is now full! We really appreciate the concern and the love shown. May God bless each and every one of you.
-Arron
Now for the more important news, we got back Nathan's blast count today from his bone marrow biopsy and it is down to 13%. So, no that is not less than 5% but it is still progressing the right way. Additionally, they corrected the misinformation they gave us last time. We had it right initially in that the Day 29 blast count is the one that determines if there is an extended induction phase. As long as Nathan keeps progressing they way he is then we should be less than 5% by Day 29 and therefore not require an extended induction phase. How it is classified is that Nathan is not a rapid early responder but he appears to be on his way to a slow early responder - the key is the early responder part. Being rapid would have been great but being slow still gets you to where you want to be - remission! Yah, it's early to use that word but we have to keep positive and with the amount of people we have praying for Nathan I'm sure we're going to get there.
What's an update without a food related story? The ulcers in Nathan's mouth are getting quite painful and so he is having trouble eating because anything that is a little firm or hard hurts. His middle of the night snack was a couple of yogurts last night as a sandwich was even too rough. Then this morning he tried cheerios which ruptured one of the ulcers leading to a fair bit of pain and blood. As you can imagine Shelley was quite calm during that ... or not. After that happened Nathan looked at all of the goodies on the counter that people have brought us and declared that the people who brought them were mean. Shelley and I looked at each other and asked Nathan why those people were mean? He explained that it wasn't nice that they brought all this good food that he likes but he isn't able to eat any and that's mean! We assured him that he would be able to eat it again but we've had to hide the goodies for now to make him feel better about it. But don't worry, his parents and brothers are making sure the goodies don't go to waste! When we inquired again about the ulcers today, Dr Mpofu gave Nathan a prescription for Magic Mouthwash (has the Nyastatin plus a topical anaesthetic) and said that the ulcers wouldn't go away until his white blood cells are back up so we have to deal with this for some time yet.
One final note about food, Shelley, the kids and I would like to genuinely thank everyone for their generosity in bringing frozen meals to us but our freezer is now full! We really appreciate the concern and the love shown. May God bless each and every one of you.
-Arron
Day 17 Update
Today was a pretty good day for Nathan. He only got up a few times in the night but he did manage to change it up on his mom. Shelley went to make him his middle of the night PB&J but he wanted a cheese sandwich instead. That is really keeping us on our sleepy toes! Little brother Justin is working on his two year old molars which explains why he wants to serenade us in the middle of the night as well.
Nathan has a few mouth ulcers now caused by the chemotherapy. He is taking a drug called Nyastatin to make sure they don't get infected but I'm not sure if the cure isn't worse. It has still been a battle to get Nathan to take this one and there is no masking it or hiding it as it is one that he has to swish in his mouth. Doing arithmetic seems to be the only way to get it done... "Nathan there is 5mls and if we do 3 how many will be left?" Shelley thought up a good one there.
Nathan also tried to walk some more today and did better than past days. He was able to go from the bathroom to the dinner table walking and both feet were mostly flat on the ground. He had been tiptoeing on the right foot but we can get him to put it flat - just not for long. He still complains that it hurts but it is getting better than it was. We just have to remember baby steps all over again.
Friday we go to the Cancer Center for more tests on his blood; we need to make sure his red blood cells and platelets are good for the next few days. Hopefully we will have results from the tests on Tuesdays. Let's all pray for good news!
Nathan has a few mouth ulcers now caused by the chemotherapy. He is taking a drug called Nyastatin to make sure they don't get infected but I'm not sure if the cure isn't worse. It has still been a battle to get Nathan to take this one and there is no masking it or hiding it as it is one that he has to swish in his mouth. Doing arithmetic seems to be the only way to get it done... "Nathan there is 5mls and if we do 3 how many will be left?" Shelley thought up a good one there.
Nathan also tried to walk some more today and did better than past days. He was able to go from the bathroom to the dinner table walking and both feet were mostly flat on the ground. He had been tiptoeing on the right foot but we can get him to put it flat - just not for long. He still complains that it hurts but it is getting better than it was. We just have to remember baby steps all over again.
Friday we go to the Cancer Center for more tests on his blood; we need to make sure his red blood cells and platelets are good for the next few days. Hopefully we will have results from the tests on Tuesdays. Let's all pray for good news!
Wednesday, December 10, 2008
Day 16 Update
Nathan had a better night last night. He was still up often but he went back to sleep relatively well. If his little brother Justin would just cooperate and sleep through the night we'd actually have a shot of getting some sleep. Thank goodness Carter is a great sleeper.
Nathan had a very low key day today. He kept saying that he doesn't feel well but when you ask him what doesn't feel well, he just says that he is sick. His chemo has caused some sores in house mouth and so now he has trouble eating but more worrisome is that he has pain when he smiles. That means he is trying not to smile right now and that sure distresses his parents because we are missing that wonderful smile. His face has gotten really chubby and when trying not to smile keeps his mouth very closed, looks very small on his face.
Nathan's big achievement today was that he was tired of waiting for Dad. He needed to go to the washroom but I was busy in the kitchen and said I'd be a minute. He rolled off the couch, crawled to the bathroom and got on the toilet by himself. He finished off and got back to the couch on his own too. That was during his energetic period of the day - it just didn't last very long but we know that he can do it when he has the mind to do it. His afternoon was pretty good, Shelley and he did all of his homework from school and he sat at the table for quite awhile doing crafts and worksheets with his mom. After that it was time for a nap though, it would be nice to be able to fall asleep like he does in the middle of everything - reminds me of his Grandpa Ray! :-)
Nathan had a very low key day today. He kept saying that he doesn't feel well but when you ask him what doesn't feel well, he just says that he is sick. His chemo has caused some sores in house mouth and so now he has trouble eating but more worrisome is that he has pain when he smiles. That means he is trying not to smile right now and that sure distresses his parents because we are missing that wonderful smile. His face has gotten really chubby and when trying not to smile keeps his mouth very closed, looks very small on his face.
Nathan's big achievement today was that he was tired of waiting for Dad. He needed to go to the washroom but I was busy in the kitchen and said I'd be a minute. He rolled off the couch, crawled to the bathroom and got on the toilet by himself. He finished off and got back to the couch on his own too. That was during his energetic period of the day - it just didn't last very long but we know that he can do it when he has the mind to do it. His afternoon was pretty good, Shelley and he did all of his homework from school and he sat at the table for quite awhile doing crafts and worksheets with his mom. After that it was time for a nap though, it would be nice to be able to fall asleep like he does in the middle of everything - reminds me of his Grandpa Ray! :-)
Tuesday, December 9, 2008
Picture Update
I added some new pictures to Nathan's gallery. Carter had asked what happens when Nathan goes to the Cancer Center so we took some pictures on our Day 15.
-Arron
-Arron
Day 15 Update
Day 15 is the big day and a little more important than we were first led to believe. We really want today's bone morrow biopsy/aspiration to show less than 5% blasts in order for Nathan to be a rapid early responder and for the protocol to keep progressing to the next phases. If his blast count is higher than 5% today then he automatically gets a new phase called "extended induction" after this phase. We originally understood that the extended induction came after more than 5% on Day 29but our understanding was incorrect. Please keep the prayers going with us. We will not get the results until Thursday at the earliest.
They kind of gave us the rest of the road map based on being less than 5% (and no that doesn't mean anything). He would go from Induction (5 weeks) to Consolidation (5 weeks), after that would be Interim Maintenance (9 weeks) then Delayed Intensification (9 weeks) and finally Maintenance. Maintenance is actually for 3 years but I think it starts right after induction and so it covers the other three phases as well. I'm sure we'll get to know these phases better and I'm also sure that I probably have something slightly off as it is a lot of information and even Dr Ali had to go look it up before talking to us.
As for how today went, it was probably better than last Tuesday overall. Nathan was up again last night at his shortly after 2am for a feed and he did have trouble understanding that he wasn't allowed to eat today. He had to fast until after the bone marrow biopsy and aspiration were done. He could probably be considered as up from then on as about every 1/2 hour (sometimes a full hour) he asked for something to eat. Sometimes he accepted our answer and sometimes he had a lot of trouble with it but we did manage to get through. He was pretty excited this morning to help pack a lunch for the hospital for when we were through. He directed traffic as I put in raw carrots, snow peas and ranch dip. Then we put in some grapes and finally a ham wrap into his lunchbox. Then we threw in some rice krispie squares and granola bars to fill in the gaps. Sounds like a nice light snack! It was a little funny in the Cancer Center when he was bugging the nurse to put his port in. He really wanted it in because then he would be closer to eating. After he finally got his port in they set up the Vinchristine (chemo) on a drip. Dr Ali checked Nathan over and everything went fine except that Dr Ali wasn't going fast enough for Nathan - let's get it moving doc! Nathan had his biopsy procedure and we were off to the play room for observation and to eat our snack. They also decided Nathan did not need a red blood cell transfusion as his Hemoglobin was at 77 which was great as that cuts 2 to 3 hours off of our stay in the play room. Once we were released, and had our snack done, we were off for home by noon. Nathan wanted a quick stop for a burger on the way home so we hit Burger King which we had to eat in the van because he didn't want to wait til he got home. Since we had made him wait most of the morning we thought eating in the van would be just fine.
So... we are in wait mode for the results of this biopsy. We have to be real careful with Nathan in regards to fevers or exposure to sickness as his white blood cell count is very low at 0.39. And we have to be back to the Cancer Center on Friday for another blood check up and hopefully we'll get the results then.
They kind of gave us the rest of the road map based on being less than 5% (and no that doesn't mean anything). He would go from Induction (5 weeks) to Consolidation (5 weeks), after that would be Interim Maintenance (9 weeks) then Delayed Intensification (9 weeks) and finally Maintenance. Maintenance is actually for 3 years but I think it starts right after induction and so it covers the other three phases as well. I'm sure we'll get to know these phases better and I'm also sure that I probably have something slightly off as it is a lot of information and even Dr Ali had to go look it up before talking to us.
As for how today went, it was probably better than last Tuesday overall. Nathan was up again last night at his shortly after 2am for a feed and he did have trouble understanding that he wasn't allowed to eat today. He had to fast until after the bone marrow biopsy and aspiration were done. He could probably be considered as up from then on as about every 1/2 hour (sometimes a full hour) he asked for something to eat. Sometimes he accepted our answer and sometimes he had a lot of trouble with it but we did manage to get through. He was pretty excited this morning to help pack a lunch for the hospital for when we were through. He directed traffic as I put in raw carrots, snow peas and ranch dip. Then we put in some grapes and finally a ham wrap into his lunchbox. Then we threw in some rice krispie squares and granola bars to fill in the gaps. Sounds like a nice light snack! It was a little funny in the Cancer Center when he was bugging the nurse to put his port in. He really wanted it in because then he would be closer to eating. After he finally got his port in they set up the Vinchristine (chemo) on a drip. Dr Ali checked Nathan over and everything went fine except that Dr Ali wasn't going fast enough for Nathan - let's get it moving doc! Nathan had his biopsy procedure and we were off to the play room for observation and to eat our snack. They also decided Nathan did not need a red blood cell transfusion as his Hemoglobin was at 77 which was great as that cuts 2 to 3 hours off of our stay in the play room. Once we were released, and had our snack done, we were off for home by noon. Nathan wanted a quick stop for a burger on the way home so we hit Burger King which we had to eat in the van because he didn't want to wait til he got home. Since we had made him wait most of the morning we thought eating in the van would be just fine.
So... we are in wait mode for the results of this biopsy. We have to be real careful with Nathan in regards to fevers or exposure to sickness as his white blood cell count is very low at 0.39. And we have to be back to the Cancer Center on Friday for another blood check up and hopefully we'll get the results then.
Monday, December 8, 2008
Day 14 Update
Nathan had another night of being up lots and this time little brother Justin really got in the act. Shelley and I were both in bed before 9 and we had a great sleep til just after 12 when Justin decided he wanted in on the partying! Finally got him down just before 1 and then Nathan had his typical 2 am PB&J sandwich. We had another good sleep from 4am to 7am so we felt really well rested today.
We needed that rest for the long afternoon at the hospital. First Nathan had blood drawn at the Cancer Center. His platelets were still OK at about 40 but his white blood cells are WAY down at .39. We have to be really careful about any fevers or infections as he has nothing to fight it off right now. His red blood cell count was also critically low and he will get a transfusion tomorrow after the bone marrow biopsy and aspiration and he also gets his Vinchristine. As a reminder, you cannot transfuse white blood cells which is why they don't. Another positive is that Nathan does not get a lumbar puncture tomorrow, that doesn't occur again until Day 29.
We also got to wait and wait and wait to see Dr Dzus. We got registered shortly after 2pm and saw the doctor at 4pm and, horror of horrors, we had forgot to bring Nathan's DS (handheld video game). That was a looong wait - at least at the Cancer Center there is a playroom but in orthopedics it is simply a waiting room.
They took X-rays again and they showed that Nathan now has osteopenia - a lowering of his bone density. That is generally caused by the chemotherapy and should be nothing to worry about and his bones should return to normal after the chemotherapy. Nothing else really showed up on any of the x-rays and his range of motion is very good. Dr Dzus simply thinks that since it was the first place to show at the beginning of the leukemia that it will be the last to return to normal. So the short version is that we should not have anything additional to worry about and, as with everything else, it is just going to take some time to heal. If there are no improvements in the next couple of weeks then we would be into the bone scans, MRIs and/or CATscans but they are not concerned enough at this point to warrant any of that.
Now the really really HARD part will be that Nathan is not allowed to eat after midnight tonight until his biopsy tomorrow. The plus side is that since we don't need platelets we should be faster at getting to the biopsy but his hunger is way greater than it was last week. I hope there are no delays tomorrow! Again, please hope and pray with us that his blast count will be less than 5%.
Our positive note for the day was that Nathan had the option of leaving the needle in his port today since he needs it tomorrow anyway. Nathan said, "no, take it out. I'll get a new one tomorrow - I'm a tough guy." That he is, that he is....
We needed that rest for the long afternoon at the hospital. First Nathan had blood drawn at the Cancer Center. His platelets were still OK at about 40 but his white blood cells are WAY down at .39. We have to be really careful about any fevers or infections as he has nothing to fight it off right now. His red blood cell count was also critically low and he will get a transfusion tomorrow after the bone marrow biopsy and aspiration and he also gets his Vinchristine. As a reminder, you cannot transfuse white blood cells which is why they don't. Another positive is that Nathan does not get a lumbar puncture tomorrow, that doesn't occur again until Day 29.
We also got to wait and wait and wait to see Dr Dzus. We got registered shortly after 2pm and saw the doctor at 4pm and, horror of horrors, we had forgot to bring Nathan's DS (handheld video game). That was a looong wait - at least at the Cancer Center there is a playroom but in orthopedics it is simply a waiting room.
They took X-rays again and they showed that Nathan now has osteopenia - a lowering of his bone density. That is generally caused by the chemotherapy and should be nothing to worry about and his bones should return to normal after the chemotherapy. Nothing else really showed up on any of the x-rays and his range of motion is very good. Dr Dzus simply thinks that since it was the first place to show at the beginning of the leukemia that it will be the last to return to normal. So the short version is that we should not have anything additional to worry about and, as with everything else, it is just going to take some time to heal. If there are no improvements in the next couple of weeks then we would be into the bone scans, MRIs and/or CATscans but they are not concerned enough at this point to warrant any of that.
Now the really really HARD part will be that Nathan is not allowed to eat after midnight tonight until his biopsy tomorrow. The plus side is that since we don't need platelets we should be faster at getting to the biopsy but his hunger is way greater than it was last week. I hope there are no delays tomorrow! Again, please hope and pray with us that his blast count will be less than 5%.
Our positive note for the day was that Nathan had the option of leaving the needle in his port today since he needs it tomorrow anyway. Nathan said, "no, take it out. I'll get a new one tomorrow - I'm a tough guy." That he is, that he is....
Sunday, December 7, 2008
Day 13 Update
Well we thought Friday night was bad, it seemed great compared to Saturday night. Not only was Nathan up often, both hungry and bathroom breaks but his little brother Justin decided to get in on the act! I made the unfortunate decision to work on a few computer things and didn't go to bed til midnight. I realized the folly of my decision when the first wakening was at 12:40. Yeesh! Made for a short night when Nathan and I were awake shortly after 5am. Tonight the boys are going to bed at 8:15 and Shelley and I at 8:30 - hope that works.
I wonder if we can get a short order cook to come in? Nathan is hungry every 10 minutes or so and knows what he wants next. It's kind of nice to know that after he's done his Eggo that he will be ready for hash browns and after that we'll have a yogurt and some fruit and after that some pasta. Then a couple of snacks like rice crisps and rice krispie squares and it is soon 11am! Now what to have for lunch....
and so it was our whole day.
At least Nathan is getting a little better with medicine - we are only having 5 minute discussions before we take it. He was a little more mobile today, crawled around and pulled himself up onto chairs and stools but still no solo walking. He was very drained after supper but we did avoid a nap so that he will go to bed earlier.
Tomorrow will be another day of trying to figure it all out. We are off to the Cancer Center after dinner to get Nathan's blood checked. That is to eliminate the waiting for results on Tuesday when Nathan has to fast before his biopsy - cuz that is a grumpy boy when he doesn't it. After the blood work then we are to meet with Dr Dusz to discuss the pain in Nathan's legs and feet. I sure hope this is something simple.
Time to get everyone ready for bed.
-Arron
I wonder if we can get a short order cook to come in? Nathan is hungry every 10 minutes or so and knows what he wants next. It's kind of nice to know that after he's done his Eggo that he will be ready for hash browns and after that we'll have a yogurt and some fruit and after that some pasta. Then a couple of snacks like rice crisps and rice krispie squares and it is soon 11am! Now what to have for lunch....
and so it was our whole day.
At least Nathan is getting a little better with medicine - we are only having 5 minute discussions before we take it. He was a little more mobile today, crawled around and pulled himself up onto chairs and stools but still no solo walking. He was very drained after supper but we did avoid a nap so that he will go to bed earlier.
Tomorrow will be another day of trying to figure it all out. We are off to the Cancer Center after dinner to get Nathan's blood checked. That is to eliminate the waiting for results on Tuesday when Nathan has to fast before his biopsy - cuz that is a grumpy boy when he doesn't it. After the blood work then we are to meet with Dr Dusz to discuss the pain in Nathan's legs and feet. I sure hope this is something simple.
Time to get everyone ready for bed.
-Arron
Saturday, December 6, 2008
Day 12 Update
Well another day and another interesting night. Last night Shelley and Nathan had a party! Nathan was up at 2am and decided he need a peanut butter and jam sandwich. He wasn't really sleepy afterward so they got up and watched some TV and then had a couple of bowls of that wonderful cheesy mac and broc! They shut their party down around 4am but Nathan was ready to go again just a couple hours later. He and I got up and he directed me on how to make hash browns and scrambled eggs. We don't know if we will be able to keep up with this party animal!! His appetite is still huge but he has been a little more low key than the past few days. A big afternoon nap was in order today.
People have asked if there is a place where they can leave a message or comment on the blog that I am writing. There are two methods that I can come up with. The first is if you go to the actual blog address http://millersrus5.blogspot.com you can leave a comment about the blog. Alternatively, you can go to the wiki on my website and leave any comments in the Message Wiki or create any pages that you want (if you can figure out how). Pam and Todd this was from your ideas.
People have asked if there is a place where they can leave a message or comment on the blog that I am writing. There are two methods that I can come up with. The first is if you go to the actual blog address http://millersrus5.blogspot.com you can leave a comment about the blog. Alternatively, you can go to the wiki on my website and leave any comments in the Message Wiki or create any pages that you want (if you can figure out how). Pam and Todd this was from your ideas.
Friday, December 5, 2008
Day 11 Update
Nathan had a pretty decent day today. He was up quite often last night and again we were planning meals for the next day. Being up that often made for a tired little guy (and tired parents) today. He had a nap just after dinner along with his mother and little brother - no such luck for Dad. He had a good afternoon as well, ate a small supper (for him lately) and back to napping right now. Shelley likes to note the changes that happen before and after naps. Usually right before he falls asleep he gets very pale and a little warm. After he wakes up he usually has some roses in his cheeks and is in a better mood - so naps are great! That said, what are the odds that he's going to sleep tonight??? I sure hope so but it isn't looking good.
Nathan is also back on some medication that he doesn't like - the Nyastatin for mouth sores and the Septra to prevent pneumonia. And again we are back to having a battle to get Nathan to take all of his meds. It's not quite a bad as the Clavulin he was taking but it is still a production.
Oh and I told you that he was going to be big into the culinary arts... for dinner he directed his mother on what he wanted to eat and how to cook it. They made cheesy macaroni and then added cooked broccoli to it to make a cheesy mac & broc and he LOVED it.
I hope everyone has a great weekend.
-Arron
Nathan is also back on some medication that he doesn't like - the Nyastatin for mouth sores and the Septra to prevent pneumonia. And again we are back to having a battle to get Nathan to take all of his meds. It's not quite a bad as the Clavulin he was taking but it is still a production.
Oh and I told you that he was going to be big into the culinary arts... for dinner he directed his mother on what he wanted to eat and how to cook it. They made cheesy macaroni and then added cooked broccoli to it to make a cheesy mac & broc and he LOVED it.
I hope everyone has a great weekend.
-Arron
Thursday, December 4, 2008
Day 10 Update
We just got back from the Cancer Center and received some OK news from Dr Ali. They had the results of Nathan's bone marrow biopsy back and his blast count has decreased just not as much as we hoped and prayed for. His blast count went from 90.8% down to 46% and so it is going the right way. However, that is far away from the 5% that we were hoping for. This also means now that we didn't avoid the biopsy and aspiration on day 15. They will check Nathan's marrow again on Day 15 and once again we will hope and pray for less than 5% blasts. If we can get to less than 5% then Nathan would still be considered an rapid early responder. If it isn't less than 5% by day 15 then Day 29 becomes a really important day. Please continue to pray for Nathan.
We had a couple of other pieces of news today. They did blood work this morning and though all of his counts were still down they were not below critical levels and so Nathan did not require any transfusions today - yay!
There is enough concern over the pain in Nathan's legs (specifically his right heel) that we are being referred to Dr Anne Dzus who is a pediatric orthopaedic surgeon at RUH. We have an appointment with her on Monday afternoon. We also have more blood work scheduled for Monday so that perhaps this Tuesday won't be quite as long as last Tuesday was.
And now for they comic relief portion. The steroids have really made our Nathan a hungry boy, in fact he had his mother up at 2:30 am making peanut butter and jam sandwiches! Every time Nathan wakes after 3 am we have to plan what we are going to have for breakfast and for lunch later that day - this could prepare him for a job in the culinary arts. Nathan has been very insistent on his food (and other) needs and Shelley does a wonderful job of caring for our little impatient patient. This really has been a situation that has tested all the skill sets that Shelley and I can offer.
We had a couple of other pieces of news today. They did blood work this morning and though all of his counts were still down they were not below critical levels and so Nathan did not require any transfusions today - yay!
There is enough concern over the pain in Nathan's legs (specifically his right heel) that we are being referred to Dr Anne Dzus who is a pediatric orthopaedic surgeon at RUH. We have an appointment with her on Monday afternoon. We also have more blood work scheduled for Monday so that perhaps this Tuesday won't be quite as long as last Tuesday was.
And now for they comic relief portion. The steroids have really made our Nathan a hungry boy, in fact he had his mother up at 2:30 am making peanut butter and jam sandwiches! Every time Nathan wakes after 3 am we have to plan what we are going to have for breakfast and for lunch later that day - this could prepare him for a job in the culinary arts. Nathan has been very insistent on his food (and other) needs and Shelley does a wonderful job of caring for our little impatient patient. This really has been a situation that has tested all the skill sets that Shelley and I can offer.
Wednesday, December 3, 2008
Day 9 Update
We had a good day today after a not so pleasant Tuesday night where Nathan was up umpteen times. Nathan got up in good spirits and had his first breakfast of an Eggo and a half. Half hour later he had his second breakfast of leftover pizza. And a few minutes after that he had his third breakfast of scrambled eggs and ketchup... did I mention that his appetite is huge right now?! After that third breakfast and not much sleep the night before it was time for a nap for him. He had a good hour plus sleep and woke up in a good mood again. We tried doing exercises on the floor to get his legs moving and he us up for that for only a few minutes.
It was very nice that Nathan was in a good mood as it was his little brother Justin's birthday yesterday. With everything else we had going on yesterday we decided to celebrate Justin's birthday today. We had a very lovely evening with grandparents from both sides, an aunt, an uncle and 3 cousins (2 little and 1 big). It was nice to be a little normal for a day.
Tomorrow we are back at the Cancer center for 10 am for another blood test. I assume that we will be there to wait for the results to see if he requires another transfusion and if he does then longer depending on which blood products he needs.
-Arron
It was very nice that Nathan was in a good mood as it was his little brother Justin's birthday yesterday. With everything else we had going on yesterday we decided to celebrate Justin's birthday today. We had a very lovely evening with grandparents from both sides, an aunt, an uncle and 3 cousins (2 little and 1 big). It was nice to be a little normal for a day.
Tomorrow we are back at the Cancer center for 10 am for another blood test. I assume that we will be there to wait for the results to see if he requires another transfusion and if he does then longer depending on which blood products he needs.
-Arron
Tuesday, December 2, 2008
Day 8 Update
Day 8 is here.... and no we don't know anything yet - just thought I'd start with that.
We had a very long day today at the Cancer center. We arrived shortly after 8 am and they got him in, interfaced with his port and drew some blood right off the bat. Then it was out to the waiting room / play room to wait for the blood test results. After about an hour they came back indicating that Nathan was critically low in both platelet and red blood cell count. That meant that his procedure had to wait until he had a platelet transfusion and that involved more waiting. As the Anaesthesiologist stated better to wait and have a hungry grumpy kid than to go ahead and risk a spinal hemotoma. Finally the platelets arrived and they started them up. Time to go! But not so fast, now we had to wait for the anaesthesiologist to come back. Anaesthesiology was booked for earlier in the morning when we were still waiting so they left and we had to wait for them to free up and come back. They were finally available shortly before noon. Wow! Keep in mind that all of that waiting was happening to a little boy who is on steroids and now has a huge appetite but was not allowed to eat anything at all! We had a few "moments" trying to explain why we were keeping food away from him and he wasn't buying it.
Anyway, after the anaesthesiologist was ready Nathan was taken into the procedure room and given a general anaesthetic to put him to sleep. He went to sleep really easily and the procedure only lasted 15 minutes after all that waiting! I keep mentioning the "procedure" and I know some people want to know what it was. The first thing they did was a lumbar puncture through which they gave Methotrexate which is to prevent the leukemia from crossing into the spinal fluid. Next they did a bone marrow aspiration and following that they did a bone marrow biopsy. The aspiration and biopsy are what will tell us whether or not the treatments are working. We will not get the results of the tests until the end of the week at the earliest but those are the tests where we are hoping for less than 5% blasts in the marrow.
Nathan woke up from anaesthesia really quickly this time and woke up hungry as a bear! We had packed a wrap, a juice box and some granola bars. Those went pretty fast as well as a bag of chips the nurses provided. Then Shelley had to make a McDonalds run and Nathan ate all of his fries, his burger and drank all of his milk as well.
While we were eating the nurses kept coming to give him different products through his port IV. First he had a saline solution, then he received his Vincristine (another chemo drug) and then he got a transfusion of red blood cells. All that took another few hours, Nathan even had a nap during his transfusion. By then it was almost 4pm and finally time to go home.
Our good news for the day was that Nathan's lymph nodes, liver and spleen were all back to normal sizes (they were all enlarged and is a common symptom) and so the chemo was working. Also his blood work showed that all of his cell counts were reduced which is a good sign as well. Our concerning news is that with all that cell reduction Nathan should now be able to walk but still cannot. The pain should have been from too many cells in his bone marrow but now that the majority have been killed off the pain should have subsided. If he still has leg pain by our day 15 visit then we will be off to see another specialist. Here's hoping he can walk by then.
Our next hospital visit is on Thursday for blood work and possible platelet transfusion if his counts are still critically low. As I said, they won't have the results of the bone marrow tests by then but hopefully it will be Friday.
Please continue to pray for us.
-Arron
We had a very long day today at the Cancer center. We arrived shortly after 8 am and they got him in, interfaced with his port and drew some blood right off the bat. Then it was out to the waiting room / play room to wait for the blood test results. After about an hour they came back indicating that Nathan was critically low in both platelet and red blood cell count. That meant that his procedure had to wait until he had a platelet transfusion and that involved more waiting. As the Anaesthesiologist stated better to wait and have a hungry grumpy kid than to go ahead and risk a spinal hemotoma. Finally the platelets arrived and they started them up. Time to go! But not so fast, now we had to wait for the anaesthesiologist to come back. Anaesthesiology was booked for earlier in the morning when we were still waiting so they left and we had to wait for them to free up and come back. They were finally available shortly before noon. Wow! Keep in mind that all of that waiting was happening to a little boy who is on steroids and now has a huge appetite but was not allowed to eat anything at all! We had a few "moments" trying to explain why we were keeping food away from him and he wasn't buying it.
Anyway, after the anaesthesiologist was ready Nathan was taken into the procedure room and given a general anaesthetic to put him to sleep. He went to sleep really easily and the procedure only lasted 15 minutes after all that waiting! I keep mentioning the "procedure" and I know some people want to know what it was. The first thing they did was a lumbar puncture through which they gave Methotrexate which is to prevent the leukemia from crossing into the spinal fluid. Next they did a bone marrow aspiration and following that they did a bone marrow biopsy. The aspiration and biopsy are what will tell us whether or not the treatments are working. We will not get the results of the tests until the end of the week at the earliest but those are the tests where we are hoping for less than 5% blasts in the marrow.
Nathan woke up from anaesthesia really quickly this time and woke up hungry as a bear! We had packed a wrap, a juice box and some granola bars. Those went pretty fast as well as a bag of chips the nurses provided. Then Shelley had to make a McDonalds run and Nathan ate all of his fries, his burger and drank all of his milk as well.
While we were eating the nurses kept coming to give him different products through his port IV. First he had a saline solution, then he received his Vincristine (another chemo drug) and then he got a transfusion of red blood cells. All that took another few hours, Nathan even had a nap during his transfusion. By then it was almost 4pm and finally time to go home.
Our good news for the day was that Nathan's lymph nodes, liver and spleen were all back to normal sizes (they were all enlarged and is a common symptom) and so the chemo was working. Also his blood work showed that all of his cell counts were reduced which is a good sign as well. Our concerning news is that with all that cell reduction Nathan should now be able to walk but still cannot. The pain should have been from too many cells in his bone marrow but now that the majority have been killed off the pain should have subsided. If he still has leg pain by our day 15 visit then we will be off to see another specialist. Here's hoping he can walk by then.
Our next hospital visit is on Thursday for blood work and possible platelet transfusion if his counts are still critically low. As I said, they won't have the results of the bone marrow tests by then but hopefully it will be Friday.
Please continue to pray for us.
-Arron
Monday, December 1, 2008
Day 7 update
Today was another day that had its moments of normalcy and then being snapped back to reality. Our Nathan does pretty good but he was a little more low key than the past few days. It's hard when we think that this is still the beginning of a very long journey ... we then have to remind ourselves to take it one day at a time.
On a positive note, Carter has really been wonderful this week. He has taken on the role of big brother well. He is very helpful with Nathan and also with Justin. It is very handy that we can ask Carter to take Justin downstairs to play while Nathan has a rest. They play ministicks and Wii hockey and Justin loves it while Carter is very patient with him. Many people have told us that this disease will make all of our boys grow up much faster. I don't know if we are ready for them to grow up just yet but the less squabbling the better!
Tomorrow (Day 8) is our first big day. Please hope and pray that the blasts are less than 5%. We are in to the Cancer center early for a full morning worth of treatment. I pray that it all goes well.
-Arron
On a positive note, Carter has really been wonderful this week. He has taken on the role of big brother well. He is very helpful with Nathan and also with Justin. It is very handy that we can ask Carter to take Justin downstairs to play while Nathan has a rest. They play ministicks and Wii hockey and Justin loves it while Carter is very patient with him. Many people have told us that this disease will make all of our boys grow up much faster. I don't know if we are ready for them to grow up just yet but the less squabbling the better!
Tomorrow (Day 8) is our first big day. Please hope and pray that the blasts are less than 5%. We are in to the Cancer center early for a full morning worth of treatment. I pray that it all goes well.
-Arron
Day 6 update
Yes I know it is Day 7 already, I'll try to update that one at the end of the day. Who would have thought it would be harder to get updates done being at home?! Nathan is having OK days. He has some stomach pain, a very tight stomach and loose bowels but he does seem to handle it well. Our biggest struggle is getting him to take his medicine. It has been a 15-20 minute session of coaxing, cajoling, bribing, threatening, negotiating and general frustration to get him to take the meds he requires. If anyone has ANY HINTS on how to get the medicine to go down (we've even tried the song with the sugar) we'd really really appreciate it. He has a couple of pills that he takes with less problem but the medicine in the syringes is a real battle.
Nathan seems to be changing a little bit and I guess that is to be expected. His voice has gotten softer and it almost seems a little sweeter (but that is probably just in his parents ears). He sees his brothers doing stuff and he likes to encourage them and try to help them - it has been very nice that way.
take care and God bless each of you
-Arron
Nathan seems to be changing a little bit and I guess that is to be expected. His voice has gotten softer and it almost seems a little sweeter (but that is probably just in his parents ears). He sees his brothers doing stuff and he likes to encourage them and try to help them - it has been very nice that way.
take care and God bless each of you
-Arron
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