Well we have spent a couple of days and a night at RUH and things have been going fairly well. Nathan has handled the treatment well so far. His biopsy site is healing, his counts are really low (as to be expected) and we have been getting day passes to leave the hospital for the afternoon.
It has been nice getting out of the hospital about 1:30 each day and spending the day at our house. Back to his room, 3013 by 9pm, and finish up the evening there. We got a chair that folds out finally but it is darn uncomfortable. My funny story on this is that the first day we had only the one recliner in our room. On Tuesday when we headed back we said that we hoped we had a hide-a-bed back in our room, but when we got there the recliner was now gone - we had no chairs! Thankfully we had a nicer nurse who tracked down that fold out chair for us.
We hope to be out of the hospital the next two afternoons as well. It really helps with Nathan not going stir crazy. Heck, today, he and his cousins were flying kites in the backyard in the afternoon. Gets him so fresh air and outside time. One of the downsides of this hospital trek is that not seeing the Cancer center staff we really feel like we haven't learned any more about the upcoming treatments.
Please continue to pray for our family.
Wednesday, June 30, 2010
Monday, June 28, 2010
Induction Day 1 (almost)
We kind of sort of almost started the Induction phase today. After a hard night with Nathan, the day started off early but according to plan, we got the Cancer clinic at 7:45 and had blood drawn for testing. We then went off to RUH for an echo cardiogram with Bob. Nathan was full of spirit today but it was a good spirit. He was testing limits but in a smiling way and was making up stories all morning. After the echo we headed back to the clinic to await his intrathecal procedure. We had time to set up the Operation game we bought for the clinic and have a couple of games, played a game of UNO and just started playing Wii when the green men (anaesthesiologists) came. Then our day went sideways.
I mentioned to Dr Ali that Nathan was having trouble with one of his testicles. It felt a little larger than the other and was sore. After Dr Ali finished giving Nathan the three drugs intrathecally (methotrexate, cytarabine, and hydrocortisone) he checked Nathan out. He too thought one was a little larger and immediately wanted a biopsy. One of the issues with Leukemia is that the leukemic cells like to hide in both the central nervous system and testes as the drugs don't really get to those areas. So having any issue there is a cause for concern. Dr Ali phoned up to a specialist, Dr Miller, to arrange the biopsy. We were hurried up to the Pediatric ward, I rushed to get Nathan admitted, so that we were ready as there was an opening in the O.R.. We were to have the biopsy and then head back to the clinic to finish up Nathan's chemotherapy. However, there was a little miscommunication there about that opening and there actually wasn't one. We ended up in our room, 3013, and were told that we likely wouldn't have the biopsy until 4:30pm. This might not seem like a big inconvenience, however Nathan hadn't eaten anything since 8pm the night before and wouldn't be allowed to eat anything until after his procedure. First we told him he could eat after his LP, and then we said he had to quickly get something else done and he could eat at about noon, and now we were saying that he couldn't eat until 6pm. He wasn't happy about that. And then we had to go back and figure out with the Dr Ali when the rest of the chemotherapy would take place. After consulting with the doctors in Calgary it was decided that we would do the rest tomorrow, essentially start the Induction phase on Tuesday while waiting on this biopsy.
On the ward, the residents came through to talk to us, get the history, the usual stuff, and mentioned that Nathan's procedure would now be this evening. Not good. But then, not even two minutes later, the nurse came in and said "I heard a rumour that he's going now". Being confused I asked, who's going where? And she replied that Nathan was going for his biopsy... it was 2pm. Off we went a couple minutes later.
We get down to the pre-op room, hung out for a bit, and they came and asked the same questions again, and then indicated that the procedure will take about 20 minutes. Off I go to the waiting room. Almost an hour later, and getting anxious, Dr Miller comes to talk to us. What he found was a torsion of the appendix epididymis. He still took the biopsy but believes the swelling and pain came from this torsion (twisting) of a small appendix (sunflower seed sized piece) off the epididymis which is just above the testes - who knew?! I think this is good news as it looks like nothing is in the testes but the biopsy results will tell us in a few days for sure. One other thing on this... Dr Miller said that this is usually quite painful, and was surprised that Nathan was not complaining more than he was. He said that Nathan must be one tough kid - that is for sure.
We got back up to the ward about 5:30, just in time for supper. Nathan was so hungry we actually ate some of the hospital food! We decided to get a leave for this evening as we will likely be staying in the hospital for the next five nights. Oh, and on that topic, there were a few strange things today but this one took the cake. In the private room there is supposed to be a fold out bed for the parents. When we had gotten up to the room this afternoon, it was completely empty, not even a bed for Nathan! When we asked the nurse about the fold out bed, she said that we had to go scope out the other rooms and see if we could steal one. What the hell is that about?! We have to walk around the ped ward peering into rooms for foldout beds and take them if they aren't being used?? Ridiculous! This children's hospital cannot come fast enough. I know our RUH staff is busy, but the service today was less than stellar and the facilities are degrading fast. I think they are avoiding fixing anything until the new hospital comes. Someone should tell them they have five years. There are holes in the drywall in Nathan's room, all of the counters are chipped, the place is very grungy, the blinds don't work and this is our best hospital? Sorry for the rant, I got sidetracked there.
On one other note, remember me saying there were 11 drugs? Well there are now 12, Nathan will also be on Allopurinol. As the chemo kills the blood cells (mainly blasts) there can be a build up of dead cells causing uric acid in the blood plasma. This drug prevents that buildup.
What did we learn today? Seems like a lot but not much. We will try to have a conference call with the transplant center in Calgary next week to discuss Nathan's further treatment. We are still focusing on the next four weeks, and the changes that today caused in that protocol. Back to the hospital and that beautiful room by 9am.... hopefully we'll find a bed to steal tomorrow.
I mentioned to Dr Ali that Nathan was having trouble with one of his testicles. It felt a little larger than the other and was sore. After Dr Ali finished giving Nathan the three drugs intrathecally (methotrexate, cytarabine, and hydrocortisone) he checked Nathan out. He too thought one was a little larger and immediately wanted a biopsy. One of the issues with Leukemia is that the leukemic cells like to hide in both the central nervous system and testes as the drugs don't really get to those areas. So having any issue there is a cause for concern. Dr Ali phoned up to a specialist, Dr Miller, to arrange the biopsy. We were hurried up to the Pediatric ward, I rushed to get Nathan admitted, so that we were ready as there was an opening in the O.R.. We were to have the biopsy and then head back to the clinic to finish up Nathan's chemotherapy. However, there was a little miscommunication there about that opening and there actually wasn't one. We ended up in our room, 3013, and were told that we likely wouldn't have the biopsy until 4:30pm. This might not seem like a big inconvenience, however Nathan hadn't eaten anything since 8pm the night before and wouldn't be allowed to eat anything until after his procedure. First we told him he could eat after his LP, and then we said he had to quickly get something else done and he could eat at about noon, and now we were saying that he couldn't eat until 6pm. He wasn't happy about that. And then we had to go back and figure out with the Dr Ali when the rest of the chemotherapy would take place. After consulting with the doctors in Calgary it was decided that we would do the rest tomorrow, essentially start the Induction phase on Tuesday while waiting on this biopsy.
On the ward, the residents came through to talk to us, get the history, the usual stuff, and mentioned that Nathan's procedure would now be this evening. Not good. But then, not even two minutes later, the nurse came in and said "I heard a rumour that he's going now". Being confused I asked, who's going where? And she replied that Nathan was going for his biopsy... it was 2pm. Off we went a couple minutes later.
We get down to the pre-op room, hung out for a bit, and they came and asked the same questions again, and then indicated that the procedure will take about 20 minutes. Off I go to the waiting room. Almost an hour later, and getting anxious, Dr Miller comes to talk to us. What he found was a torsion of the appendix epididymis. He still took the biopsy but believes the swelling and pain came from this torsion (twisting) of a small appendix (sunflower seed sized piece) off the epididymis which is just above the testes - who knew?! I think this is good news as it looks like nothing is in the testes but the biopsy results will tell us in a few days for sure. One other thing on this... Dr Miller said that this is usually quite painful, and was surprised that Nathan was not complaining more than he was. He said that Nathan must be one tough kid - that is for sure.
We got back up to the ward about 5:30, just in time for supper. Nathan was so hungry we actually ate some of the hospital food! We decided to get a leave for this evening as we will likely be staying in the hospital for the next five nights. Oh, and on that topic, there were a few strange things today but this one took the cake. In the private room there is supposed to be a fold out bed for the parents. When we had gotten up to the room this afternoon, it was completely empty, not even a bed for Nathan! When we asked the nurse about the fold out bed, she said that we had to go scope out the other rooms and see if we could steal one. What the hell is that about?! We have to walk around the ped ward peering into rooms for foldout beds and take them if they aren't being used?? Ridiculous! This children's hospital cannot come fast enough. I know our RUH staff is busy, but the service today was less than stellar and the facilities are degrading fast. I think they are avoiding fixing anything until the new hospital comes. Someone should tell them they have five years. There are holes in the drywall in Nathan's room, all of the counters are chipped, the place is very grungy, the blinds don't work and this is our best hospital? Sorry for the rant, I got sidetracked there.
On one other note, remember me saying there were 11 drugs? Well there are now 12, Nathan will also be on Allopurinol. As the chemo kills the blood cells (mainly blasts) there can be a build up of dead cells causing uric acid in the blood plasma. This drug prevents that buildup.
What did we learn today? Seems like a lot but not much. We will try to have a conference call with the transplant center in Calgary next week to discuss Nathan's further treatment. We are still focusing on the next four weeks, and the changes that today caused in that protocol. Back to the hospital and that beautiful room by 9am.... hopefully we'll find a bed to steal tomorrow.
Sunday, June 27, 2010
ETU Day 7
Well tomorrow we will start with a new Induction phase. Shelley and I are starting to wrap our minds around the path involved but it is very hard. One of the things that helps us is doing the research about what is happening and what may be in story for Nathan. One of the things we keep getting asked about is how people go about being a bone marrow donor. Only immediate family will be tested specifically for Nathan but we do encourage everyone else to sign up for OneMatch.
But first, we have to get into remission, and that is where our efforts focus starting Monday. Please keep the prayers coming.
"OneMatch Stem Cell and Marrow Network is responsible for finding and matching volunteer donors for patients who require stem cell transplants. Fewer than 30 per cent of patients who need stem cell transplants find a compatible donor within their own families. The rest rely on those who have volunteered to donate stem cells to anyone in need."The other question we are getting quite a bit is what is the difference between stem cell, and bone marrow transplantation and the answer is nothing really. They both are looking for hematopoietic or blood-forming stem cells. The difference is there are two different way to collect the hematopoietic stem cells, one being through the bone marrow (BMT) and the other being through peripheral blood (PBSCT). Here is one of the best definitions of peripheral stem cell transplantation I have come across.
"A method of replacing blood-forming cells destroyed by cancer treatment. Immature blood cells (stem cells) in the circulating blood that are similar to those in the bone marrow are given to the patient after treatment. This helps the bone marrow recover and continue producing healthy blood cells. Transplantation may be autologous (an individual's own blood cells saved earlier), allogeneic (blood cells donated by someone else), or syngeneic (blood cells donated by an identical twin). Also called peripheral stem cell support."Nathan will be in line for an allogeneic bone marrow stem cell transplantation. Allogenic means that Nathan has to get the donation from another host, either related or unrelated. There is an advantage to this type referred to as "graft-vs-leukemia" effect where the new healthy cells will attack any residual leukemia cells. The disadvantage is called "graft-vs-host disease (GvHD)" where the new cells will actually attack Nathan's body.
But first, we have to get into remission, and that is where our efforts focus starting Monday. Please keep the prayers coming.
Friday, June 25, 2010
ETU Day 5
Well let's start it off with some good news. Nathan got his report card yesterday as he wasn't going to be at school for the actual last day of class today. Nathan did quite well, as he improved his marks to mostly 3s with 4s in all the Math subject. He is also quite proud of his 4 in Drama/Dance though his dancing is a lot like Uncle Rodney! Maybe Rod actually isn't that bad ;-) Nathan made an agreement with his mom that if he pulled all his 2s up to 3s that they would go half and half on a new DS game - I guess he and Shelley are going shopping! Nathan really did work hard to catch up after missing essentially the first half of the year.
Carter also did quite well on his report card today. 4s across the board for him and a glowing report from his teacher. We can't express enough just how proud we are of our boys, they put in the work to get the results.
And speaking of results, if you haven't seen them yet, you should check out the results from our family picture shoot in the gallery. We've been trying to arrange with the lovely and talented Erin Francais for almost a year now, and for once things finally lined up for us. I got the boys hair cut on Tuesday and on Wednesday both Shelley and Erin had the same thoughts in the morning - it has got to happen to today. Thankfully Erin took time out of her day to come and shoot some pictures for us and she did an absolutely wonderfully fantastic job - thanks Erin! Oh, and you might have noticed the haircuts on the boys... no, they were not mother approved but lucky for them they were with their Dad on haircut night. Even our talented hairdresser Tracy didn't want to do it knowing Shelley's opinions on that cut in the past but we talked her into it and I think they turned out great.
OK, I know you didn't really come to our blog to read all that but sometimes we need to remember that life still goes on and we have to try very hard to take part in it. These past couple of days have really made Shelley and I want to retreat and bunker in, hopefully we'll get past that.
We spent an interesting day in the clinic today. We seemed to be there all day but really all we did was give blood and get platelets. And even then, we didn't really need platelets, we just got them because we knew we would need them on Monday. Nurse Andrea talked with Shelley and I for quite awhile today explaining what our next phase will be about and she patiently answered most of our questions and concerns. We have more questions that can only be answered via a conference call with the transplant center in Calgary but what we do know is: We start an Induction phase on Monday and they follow the Edmonton A.L.L. Bone Marrow & CNS Relapse Protocol. (why it comes from Calgary and is called the Edmonton protocol we don't know). This is a 4 week protocol with an option for two more weeks and is much different than the induction that we had before. The drugs involved are Prednisone (steroid) which he gets three times a day for 28 days. The set of IV chemo drugs consist of ARA-C (Cytosine Arabinoside) which is twice a day for the first five days. He will also get Vincristine every 7 days and Daunomycin (hard on heart) only on days 1 & 2. In addition to these he also gets three Intrathecal drugs Methotrexate and ARA-C which are the chemo ones and Hydrocortisone which is a steroid. Last of the chemo drugs, but certainly not least, is the PEG L'Asparaginase but that is the one that Nathan was allergic to so he will be getting the Erwinia L'Asparaginase (blasted leg needles) on days 3, 5, 8, 10, 12 & 15. That is not going to pretty as Nathan really fought those by the end last time. The last two drugs that Nathan will be on are Septra to guard against pneumonia and Fluconazole to guard against fungal infections. And just for fun, he will most likely have a steady dose of Ondansetron while getting the ARA-C to combat any nauseousness. So were you counting along? How many was that? If you said "too damn many!" then you are right! You would also be right if you said 11 different drugs that Nathan will be one: 6 chemo, 2 steroid, 2 preventative and 1 anti-nausea - that really is overwhelming.
It all starts (again) on Monday; we will be going in for blood work at 7:45 am so that they can have it back before his LP for the triple intrethecal therapy at 9:30. In between we will be going for an Echo cardiogram in order to baseline his heart function as one of the chemotherapy drugs is quite hard on the heart. We will get the rest of the chemo drugs scheduled for day 1 (ARA-C, Vincristine, Daunomycin) in the clinic. After we are done there, Nathan will be admitted into RUH. In order to get the ARA-C twice a day, at 12 hours apart, it has to be done in the hospital. So for the rest of the first week at the minimum Nathan will be admitted to RUH. We are hoping to get a day pass so we can leave during the day but that is another unknown just yet.
The point of all this is to get Nathan into remission within 28 days. There is an option to continue induction for an additional two weeks if he is not in remission yet after the first four weeks. If still not in remission after those two..... well we just aren't going to go there as NATHAN WILL GET BACK TO REMISSION with all your positive thoughts and prayers for him and through the hard work of the Cancer Center staff. Thank you all very much for the concern you've shown for Nathan and the rest of our family.
Now do you know why I started this post the way I did??
Carter also did quite well on his report card today. 4s across the board for him and a glowing report from his teacher. We can't express enough just how proud we are of our boys, they put in the work to get the results.
And speaking of results, if you haven't seen them yet, you should check out the results from our family picture shoot in the gallery. We've been trying to arrange with the lovely and talented Erin Francais for almost a year now, and for once things finally lined up for us. I got the boys hair cut on Tuesday and on Wednesday both Shelley and Erin had the same thoughts in the morning - it has got to happen to today. Thankfully Erin took time out of her day to come and shoot some pictures for us and she did an absolutely wonderfully fantastic job - thanks Erin! Oh, and you might have noticed the haircuts on the boys... no, they were not mother approved but lucky for them they were with their Dad on haircut night. Even our talented hairdresser Tracy didn't want to do it knowing Shelley's opinions on that cut in the past but we talked her into it and I think they turned out great.
OK, I know you didn't really come to our blog to read all that but sometimes we need to remember that life still goes on and we have to try very hard to take part in it. These past couple of days have really made Shelley and I want to retreat and bunker in, hopefully we'll get past that.
We spent an interesting day in the clinic today. We seemed to be there all day but really all we did was give blood and get platelets. And even then, we didn't really need platelets, we just got them because we knew we would need them on Monday. Nurse Andrea talked with Shelley and I for quite awhile today explaining what our next phase will be about and she patiently answered most of our questions and concerns. We have more questions that can only be answered via a conference call with the transplant center in Calgary but what we do know is: We start an Induction phase on Monday and they follow the Edmonton A.L.L. Bone Marrow & CNS Relapse Protocol. (why it comes from Calgary and is called the Edmonton protocol we don't know). This is a 4 week protocol with an option for two more weeks and is much different than the induction that we had before. The drugs involved are Prednisone (steroid) which he gets three times a day for 28 days. The set of IV chemo drugs consist of ARA-C (Cytosine Arabinoside) which is twice a day for the first five days. He will also get Vincristine every 7 days and Daunomycin (hard on heart) only on days 1 & 2. In addition to these he also gets three Intrathecal drugs Methotrexate and ARA-C which are the chemo ones and Hydrocortisone which is a steroid. Last of the chemo drugs, but certainly not least, is the PEG L'Asparaginase but that is the one that Nathan was allergic to so he will be getting the Erwinia L'Asparaginase (blasted leg needles) on days 3, 5, 8, 10, 12 & 15. That is not going to pretty as Nathan really fought those by the end last time. The last two drugs that Nathan will be on are Septra to guard against pneumonia and Fluconazole to guard against fungal infections. And just for fun, he will most likely have a steady dose of Ondansetron while getting the ARA-C to combat any nauseousness. So were you counting along? How many was that? If you said "too damn many!" then you are right! You would also be right if you said 11 different drugs that Nathan will be one: 6 chemo, 2 steroid, 2 preventative and 1 anti-nausea - that really is overwhelming.
It all starts (again) on Monday; we will be going in for blood work at 7:45 am so that they can have it back before his LP for the triple intrethecal therapy at 9:30. In between we will be going for an Echo cardiogram in order to baseline his heart function as one of the chemotherapy drugs is quite hard on the heart. We will get the rest of the chemo drugs scheduled for day 1 (ARA-C, Vincristine, Daunomycin) in the clinic. After we are done there, Nathan will be admitted into RUH. In order to get the ARA-C twice a day, at 12 hours apart, it has to be done in the hospital. So for the rest of the first week at the minimum Nathan will be admitted to RUH. We are hoping to get a day pass so we can leave during the day but that is another unknown just yet.
The point of all this is to get Nathan into remission within 28 days. There is an option to continue induction for an additional two weeks if he is not in remission yet after the first four weeks. If still not in remission after those two..... well we just aren't going to go there as NATHAN WILL GET BACK TO REMISSION with all your positive thoughts and prayers for him and through the hard work of the Cancer Center staff. Thank you all very much for the concern you've shown for Nathan and the rest of our family.
Now do you know why I started this post the way I did??
Thursday, June 24, 2010
ETU Day 4
Looking for a new title for these days and I guess ETU will work for now. Shelley and I met with the staff at the Cancer Center today to discuss our options for treatments for Nathan going forward. As usual we keep hoping to know *more* but almost every time we are left with almost as many new questions as questions answered.
One of our first decisions today was to choose which center to go to for the bone marrow transplant. Our center has a good relationship with Winnipeg but we decided to go to Calgary as we will have a better support system there. The reason we had to choose a transplant center is that they set the protocol for the induction phase.
Calgary would like us to start on Monday instead of Friday so we will learn more about that tomorrow. Basically what we know now is that we will try to be in remission in the next 4 weeks. And then we go from there.
We go in tomorrow for bloodwork as they suspect he might need platelets and at that time we should learn more about the next four weeks.
Thank you all for continuing your prayers for Nathan.
One of our first decisions today was to choose which center to go to for the bone marrow transplant. Our center has a good relationship with Winnipeg but we decided to go to Calgary as we will have a better support system there. The reason we had to choose a transplant center is that they set the protocol for the induction phase.
Calgary would like us to start on Monday instead of Friday so we will learn more about that tomorrow. Basically what we know now is that we will try to be in remission in the next 4 weeks. And then we go from there.
We go in tomorrow for bloodwork as they suspect he might need platelets and at that time we should learn more about the next four weeks.
Thank you all for continuing your prayers for Nathan.
Tuesday, June 22, 2010
In Need of More Prayers
It has been a long time since our last post. As they say, no news was good news. Our life was progressing rather normally. We have been working on the house and yard. The boys played sports when it wasn't raining. Carter and Nathan are both playing the piano and had their recitals. And we have made plans for a two week camping vacation in June.
Cue ETU.
Nathan's blood counts have been quite low for the past three weeks. Low enough that he has been off all chemotherapy medication in order to wait for it to come back up naturally. Dr Ali was concerned enough to take an extra blood sample to send off to the states to see if Nathan was metabolizing the chemo drugs too quickly or just what might be happening last week. And then, in Nathan's bloodwork yesterday, the damn blasts appeared. Blasts are one of the shows of Leukemia and that it may be back. Nathan had a bone marrow biopsy and lumbar puncture this morning and we received the bad news - Nathan has relapsed, the Leukemia is back, this time in the bone marrow and spinal fluid. Thursday we meet to discuss the plan to get Nathan into remission and then the plan for a bone marrow transplant. Friday Nathan will start the course of chemotherapy he went through December of 2008.
The great news is Nathan feels great, played baseball in the back yard last night with his brothers, Dad and Uncle Perry, and after his bone marrow biopsy, convinced Arron and I to let him go to school for the afternoon.
Therefore, we need a LOT OF PRAYER. We were positive about not going down this route and yet here we are.
Please pray for Nathan and the rest of our family.
Cue ETU.
Nathan's blood counts have been quite low for the past three weeks. Low enough that he has been off all chemotherapy medication in order to wait for it to come back up naturally. Dr Ali was concerned enough to take an extra blood sample to send off to the states to see if Nathan was metabolizing the chemo drugs too quickly or just what might be happening last week. And then, in Nathan's bloodwork yesterday, the damn blasts appeared. Blasts are one of the shows of Leukemia and that it may be back. Nathan had a bone marrow biopsy and lumbar puncture this morning and we received the bad news - Nathan has relapsed, the Leukemia is back, this time in the bone marrow and spinal fluid. Thursday we meet to discuss the plan to get Nathan into remission and then the plan for a bone marrow transplant. Friday Nathan will start the course of chemotherapy he went through December of 2008.
The great news is Nathan feels great, played baseball in the back yard last night with his brothers, Dad and Uncle Perry, and after his bone marrow biopsy, convinced Arron and I to let him go to school for the afternoon.
Therefore, we need a LOT OF PRAYER. We were positive about not going down this route and yet here we are.
Please pray for Nathan and the rest of our family.
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