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.
Saturday, December 6, 2008
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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