I was so pleased this morning to walk into Noah's room after church to see him sitting up and talking with Tom. He looked so good! Well, to be honest, he still looks really bad, but he was so alert, he looked good! He ended up being awake most of the day and evening, which is a huge improvement, just by itself, but again, his weight was down 300g, and his liver enzymes were down again too, so it really looks like things are beginning to turn around. He still isn't peeing as much as they would like, but they continue to assure us, it will come. You can hear that his voice is weak, it sounds kind of nasal; I'm not sure if it is the oxygen or his lungs having fluid in them, or what, but his voice sounds funny. But, at least he is talking!
The biggest thing is that he just looks more comfortable. He is able to lean back in his bed and still breathe, and he is able to sit forward in his bed, like cross-legged for a little while and still breathe. His breathing isn't so laboured anymore, and tonight before I left, the nurse had him down to 3 litres of oxygen from 4, so they are starting to try and wean him off the o2 these next few days.
I have to tell myself not to get too excited, he is starting to turn the corner, but he isn't all the way around it yet! And it will take a while before they will be ready to let him go to RMH, let alone home. A nurse told me yesterday that I shouldn't be surprised if we are still in hospital after 10 days. From yesterday. Well, as long as he continues to improve, I don't really care where we are.
I suppose the best part of the day was when I was leaving I leaned down to kiss his head and he hugged me! It was great! Until tonight, he didn't have the energy to lift his arms up, but tonight I got a hug. : )
The worst part of the day was saying goodbye to my girls. Alyson asked me when I would be coming home and I had to say, "I don't know." Ugh. I don't like that. I feel bad for them, and I want to be with them, I should be with them. But they are really amazing and so resilient. They have realized that this is our new life, and we just have to do this for a while, then it will be back to normal again. I think this is in large part due to our community in Smithers, all of you have really stood in the gap for me and loved them and taken such good care of them (and Tom). Thank you. Once again, we couldn't do all of this without your support.
Tomorrow is Halloween, and Noah has been talking about trick or treating in this neighbourhood for months! He has a great costume, and he couldn't wait to see how people in Shaughnessy decorate their houses, and what kinds of things do they give out in a neighbourhood where all the houses are worth 3-6 million dollars??? Anyway, we decided not to mention it, but today he figured it out. He was quite disappointed, but I told him I would bring his costume to the hospital (he has this great mask attached to a baseball cap - it is a man with big bushy eyebrows and a big bushy mustache with a stub of a cigar sticking out of his mouth. It is just the top half of his face, but it awesome!) and there is a halloween parade in the afternoon, so he could either take part in it (depending on the oxygen thing) or watch it from his room. I'm sure there will be an overabundance of candy as well, though he isn't particularly interested in eating it, just collecting it! Hopefully the activities will be enjoyable, and he can freak out a few nurses with his mask. He has worn it around here and out and about,and he got a good reaction, so hopefully he will enjoy tomorrow.
Well, now that it IS tomorrow, I should get to bed. Thank you for continuing to pray for Noah, the Lord has certainly heard our cries and answered! Thank you.
Monday, October 31, 2011
Sunday, October 30, 2011
A "smidge" better
Noah is doing a little better. A very little, but that is ok. This morning when they measured his belly he was down 2 cm, and he weighed 300g less than yesterday. That is what we have been waiting for - a sign that things are starting to move in the other direction. His belly is still 76 cm, or 30 inches. His weight is still 83 pounds, up from 68 on Sunday. But his liver enzymes are WAY down; for example, there is one that is supposed to be 10-60 and it was over 2400 - now it is down to 740. That means that his liver is starting to work again, albeit very little. The pee, however, is not yet flowing in abundance. But it is coming. They keep telling me it will come.
Today was a very nice day, we had some visitors: Trevor Vanderveen (my 2nd cousin and a pastor of the church we normally attend in Vancouver, and also former Smithereens, Dan and Irene Schat. It was very nice to see all of them, and to pray together.
He did have a bit of an "incident" later on this afternoon: he got up to pee and then started saying how much his liver hurt, so he got back onto his bed. Meanwhile, the SAT monitor (measures the percentage of oxygen in his blood, or oxygen saturation) started beeping like crazy and his sats went down to 83%, which really isn't all that low, but for some reason, it just wouldn't go back up to where it should be, 92 % or higher. He also wouldn't move over and sit properly and he was in pain, so he was kind of hyperventilating, and crying, so the nurse had to take the nasal prongs out and use a mask and she also turned his oxygen up to 10 litres before it brought his sats up. We didn't realize at that point that it was related to pain, so we got pretty freaked out! She gave him some morphine, and then went to get the Dr, who came very quickly to check him all out. She ordered a chest X-ray and that the morphine be given every three hours, instead of as needed. He kept the mask on and managed to get down to 5 litres, but that was up from 3 liters, where he has been for a couple of days. I became quite worried that this was a setback, but the nurse assured me that it was more of a sidestep than a setback. We figured out that yes, it was pain related, that as soon as he was comfortable, the o2 went down.
The radiologist brought the X-ray machine right up to Noah's room, which was cool, we didn't have to get the entourage back together, Noah just had to sit up straight in bed. The results showed a bit more fluid in the left lung. Rats. The Dr. said that really, he was doing fine, this is just a little blip on his screen, he would get off the mask and tomorrow we would wean him off of some of the o2, back down to 2 litres or less.
This caused a bit of a quandary for us, though, because up until that point, Noah had been doing ok, and was so stable, when RMH called yesterday and asked us if we wanted Box Seats to the football game tonight, we initially said yes. Tom's mom is here, and she said she was willing to sit with Noah while the rest of the family went to the game. Now, after this,
A. we didn't want to leave him at all and
B. Mom didn't really feel comfortable staying with him
But the house had kind of put pressure on us to go (the owner of the box was going to be there, so they wanted the box full, so as not to offend him) and the girls really needed to get out of the hospital and do something fun. Noah wanted one of us to stay, so we decided that one would go with the girls and one of us would stay. Tom had more reservations about leaving Noah than I did - I don't think he really trusted their assessment of the situation- but in the end, Noah convinced him that he should go because he doesn't get to do all the fun stuff like I do. He agreed, but really only for the girls. Anyway, in the end it was fun, the girls had a blast and Noah was fine. Alyson was hoarse from cheering so loudly; apparently she loves football. Who knew?
While they were gone, the mask drove Noah crazy, so he decided to go back to the prongs, which went fine. He went down to 4 liters and his sats were 95-97 when I left. He was awake and negotiating what he could spend his remaining 90mL drinking, orange juice or root beer. unfortunately, he needed platelets today, so that ate up a lot of his fluids, and later tonight he will have more red blood cells, which will further reduce the amount he can drink by 500 mL. Man, once those transfusions stop, he will be laughing! He will be able to drink so much, he will be floating!
So we thank God for little things, and big things today, and continue to ask him for Noah's complete recovery. Thank you for joining us in prayer for our sweet boy.
Today was a very nice day, we had some visitors: Trevor Vanderveen (my 2nd cousin and a pastor of the church we normally attend in Vancouver, and also former Smithereens, Dan and Irene Schat. It was very nice to see all of them, and to pray together.
He did have a bit of an "incident" later on this afternoon: he got up to pee and then started saying how much his liver hurt, so he got back onto his bed. Meanwhile, the SAT monitor (measures the percentage of oxygen in his blood, or oxygen saturation) started beeping like crazy and his sats went down to 83%, which really isn't all that low, but for some reason, it just wouldn't go back up to where it should be, 92 % or higher. He also wouldn't move over and sit properly and he was in pain, so he was kind of hyperventilating, and crying, so the nurse had to take the nasal prongs out and use a mask and she also turned his oxygen up to 10 litres before it brought his sats up. We didn't realize at that point that it was related to pain, so we got pretty freaked out! She gave him some morphine, and then went to get the Dr, who came very quickly to check him all out. She ordered a chest X-ray and that the morphine be given every three hours, instead of as needed. He kept the mask on and managed to get down to 5 litres, but that was up from 3 liters, where he has been for a couple of days. I became quite worried that this was a setback, but the nurse assured me that it was more of a sidestep than a setback. We figured out that yes, it was pain related, that as soon as he was comfortable, the o2 went down.
The radiologist brought the X-ray machine right up to Noah's room, which was cool, we didn't have to get the entourage back together, Noah just had to sit up straight in bed. The results showed a bit more fluid in the left lung. Rats. The Dr. said that really, he was doing fine, this is just a little blip on his screen, he would get off the mask and tomorrow we would wean him off of some of the o2, back down to 2 litres or less.
This caused a bit of a quandary for us, though, because up until that point, Noah had been doing ok, and was so stable, when RMH called yesterday and asked us if we wanted Box Seats to the football game tonight, we initially said yes. Tom's mom is here, and she said she was willing to sit with Noah while the rest of the family went to the game. Now, after this,
A. we didn't want to leave him at all and
B. Mom didn't really feel comfortable staying with him
But the house had kind of put pressure on us to go (the owner of the box was going to be there, so they wanted the box full, so as not to offend him) and the girls really needed to get out of the hospital and do something fun. Noah wanted one of us to stay, so we decided that one would go with the girls and one of us would stay. Tom had more reservations about leaving Noah than I did - I don't think he really trusted their assessment of the situation- but in the end, Noah convinced him that he should go because he doesn't get to do all the fun stuff like I do. He agreed, but really only for the girls. Anyway, in the end it was fun, the girls had a blast and Noah was fine. Alyson was hoarse from cheering so loudly; apparently she loves football. Who knew?
While they were gone, the mask drove Noah crazy, so he decided to go back to the prongs, which went fine. He went down to 4 liters and his sats were 95-97 when I left. He was awake and negotiating what he could spend his remaining 90mL drinking, orange juice or root beer. unfortunately, he needed platelets today, so that ate up a lot of his fluids, and later tonight he will have more red blood cells, which will further reduce the amount he can drink by 500 mL. Man, once those transfusions stop, he will be laughing! He will be able to drink so much, he will be floating!
So we thank God for little things, and big things today, and continue to ask him for Noah's complete recovery. Thank you for joining us in prayer for our sweet boy.
Thursday, October 27, 2011
"Very Sick, but Stable"
That is apparently what they have been saying about Noah. However, he continues to gain fluid and his breathing continues to become more and more labored. He had a chest x ray this morning and we had to go down there with his mega double IV pole, an oxygen tank, the Sat monitor and Noah in a wheelchair, with all his tubes and lines, looking very pale and bald and sick. It was a crazy caravan with the porter pushing the wheelchair, the nurse with the oxygen tank, I had the Sat monitor and Tom went ahead, opening doors and pushing buttons. As we entered Radiology through the side door, all heads turned toward us in amazement. The room was completely silent as we made our way to the room where we waited for the x ray. I turned to Tom and said," well, we just made all those parents feel a whole lot better..."
It is totally true. I remember seeing kids with rigs like that and thinking to myself, " Wow, I am so glad my kid just has Leukemia!" I never thought in a million years that I would be a parent of one of "those kids" But here we are.
And at least we are together. Tom arrived this morning, and tomorrow the girls and Tom's mom are flying from Smithers. It will be so nice to see them. Tom pulled out the proofs for the girls' school pictures and I just started crying - they are so beautiful and I miss them so much. I can't wait to hug them.....
So thank you to those who arranged for all of that, and took care of all the details (!) the girls are super excited to see Noah, though I don't think they really understand how sick he actually is. But they are amazing, compassionate girls and they will hopefully be able to sense our peace in this situation.
We have heard from everyone we talk to that it will get better. It will probably get worse before it gets better, but he will be just fine. I am clinging to that. I don't think Doctors say that kind of thing lightly, especially in a situation like this, so I feel very hopeful. It is going to be a while, though, and there will be setbacks as well, I'm sure.
Noah had a pretty good day. At the beginning of the day he was on 3L of oxygen, but for the x-ray he had to stand up straight (it was very difficult for him to stand up at all, let alone straight) and take a deep breath. It was hard for him to do that. The next one was from the side and I put on an apron and stood in front of him and held his arms up in the air and he took another deep breath- this time it was easier, and by the time we got back to the room he was breathing much better, and he only needed to be on 2L for most of the day. He is currently on 3L, but will likely be bumped up to at least 4 during the night. Unless the defibrotide starts really working and he has to pee a lot. (I'm praying for three times)
Deep breathing is very good for lungs, it reminds them how much they can actually hold, and then they stop doing all these little shallow breaths. The physio came and gave us this breathing "game" for Noah to try; there is a visual incentive for him keep breathing through a tube and keep a little duck in the right place. It is hard to describe, and it is hard to do, I hope he will try it more wholeheartedly tomorrow.
He was very upset this afternoon and evening because the Kidney Docs have decided that he should be taking in considerably less than what he pees out. They came up with a formula: he can drink the same amount he pees out minus 100 mL, unless he gets a transfusion, which adds to the amount you would subtract. For example, this afternoon he peed out 180 mL and 200 mL in a four hour period, which meant that he could drink 280mL (180 +200= 380 - 100= 280), except that he got a blood transfusion which constitutes 250mL, so really he could only drink 30 mL, or 2 tbsp. He cried, and I don't blame him at all. He is super thirsty, but the doctors have decided that his fluid balance needs to be -500mL by the morning, which means he needs to pee out 500mL more than he drinks, which is a LOT! He did pretty well this evening, because he had platelets, so they gave him Benedryl, and he just slept all evening. I think it is best if he sleeps, because he can't think about how thirsty he is if he is asleep, right?
Well, we had quite a bad night last night - he just couldn't get comfortable and finally i asked the nurse for some Morphine for him and that helped so much, they decided to just give it to him every 4 hours to keep him comfortable. Oh and he has a new eggcrate foam topper for his bed now, too and a different set up for his pillows, thanks to the OT who came today.
I am having a hard time keeping my eyes focused, so I think I should probably stop typing and go to bed. Thank you for praying for our sweet boy, we appreciate how everyone has supported us and him during this time.
My sister Julie posted this on her facebook :
Julie Holt
It is totally true. I remember seeing kids with rigs like that and thinking to myself, " Wow, I am so glad my kid just has Leukemia!" I never thought in a million years that I would be a parent of one of "those kids" But here we are.
And at least we are together. Tom arrived this morning, and tomorrow the girls and Tom's mom are flying from Smithers. It will be so nice to see them. Tom pulled out the proofs for the girls' school pictures and I just started crying - they are so beautiful and I miss them so much. I can't wait to hug them.....
So thank you to those who arranged for all of that, and took care of all the details (!) the girls are super excited to see Noah, though I don't think they really understand how sick he actually is. But they are amazing, compassionate girls and they will hopefully be able to sense our peace in this situation.
We have heard from everyone we talk to that it will get better. It will probably get worse before it gets better, but he will be just fine. I am clinging to that. I don't think Doctors say that kind of thing lightly, especially in a situation like this, so I feel very hopeful. It is going to be a while, though, and there will be setbacks as well, I'm sure.
Noah had a pretty good day. At the beginning of the day he was on 3L of oxygen, but for the x-ray he had to stand up straight (it was very difficult for him to stand up at all, let alone straight) and take a deep breath. It was hard for him to do that. The next one was from the side and I put on an apron and stood in front of him and held his arms up in the air and he took another deep breath- this time it was easier, and by the time we got back to the room he was breathing much better, and he only needed to be on 2L for most of the day. He is currently on 3L, but will likely be bumped up to at least 4 during the night. Unless the defibrotide starts really working and he has to pee a lot. (I'm praying for three times)
Deep breathing is very good for lungs, it reminds them how much they can actually hold, and then they stop doing all these little shallow breaths. The physio came and gave us this breathing "game" for Noah to try; there is a visual incentive for him keep breathing through a tube and keep a little duck in the right place. It is hard to describe, and it is hard to do, I hope he will try it more wholeheartedly tomorrow.
He was very upset this afternoon and evening because the Kidney Docs have decided that he should be taking in considerably less than what he pees out. They came up with a formula: he can drink the same amount he pees out minus 100 mL, unless he gets a transfusion, which adds to the amount you would subtract. For example, this afternoon he peed out 180 mL and 200 mL in a four hour period, which meant that he could drink 280mL (180 +200= 380 - 100= 280), except that he got a blood transfusion which constitutes 250mL, so really he could only drink 30 mL, or 2 tbsp. He cried, and I don't blame him at all. He is super thirsty, but the doctors have decided that his fluid balance needs to be -500mL by the morning, which means he needs to pee out 500mL more than he drinks, which is a LOT! He did pretty well this evening, because he had platelets, so they gave him Benedryl, and he just slept all evening. I think it is best if he sleeps, because he can't think about how thirsty he is if he is asleep, right?
Well, we had quite a bad night last night - he just couldn't get comfortable and finally i asked the nurse for some Morphine for him and that helped so much, they decided to just give it to him every 4 hours to keep him comfortable. Oh and he has a new eggcrate foam topper for his bed now, too and a different set up for his pillows, thanks to the OT who came today.
I am having a hard time keeping my eyes focused, so I think I should probably stop typing and go to bed. Thank you for praying for our sweet boy, we appreciate how everyone has supported us and him during this time.
My sister Julie posted this on her facebook :
Julie Holt
I think that is so funny. Pray for Pee - our new rallying cry...
Pray for Pee!
Pray for Pee!
Pray for Pee!
No Change...yet
Today has been largely the same as yesterday. Noah still has a very large belly, he is still gaining "weight" and girth, but the rate of gain has slowed from the last few days. Probably this is due to the fact that his fluids have been restricted, even the infusions of drugs are now in the minimum amount of fluids possible. He is anemic, but they are even holding off on giving him blood because they don't want to give him any more fluids. He is only allowed to drink the amount he pees. Otherwise his fluid balance would be out of whack. Right now he is on the negative side, which is good. I suppose it helps that he basically slept all day - he can't drink if he is asleep! Thankfully, he is peeing out more than he has taken in. That said, he is still not peeing as much as they want him to. The diuretics are making him thirsty, which isn't really that good, because that means his kidneys are looking elsewhere for fluids, not the fluids he already has inside his body. I hope that all made sense. I am feeling a bit foggy at the moment.
I think it is time for bed, although there isn't much chance I'll be able to sleep; he is getting a platelet transfusion right now to keep his platelets up high enough for the defibratide. When they are done, the IV will beep, then the nurse will come in and start a flush, then that will beep, then she will start the Lasiks, then that will beep, then about an hour after that is done, we have to wake him up to pee. Then every two hours after that she will come in to check his vitals. Sometimes the IV beeps for other reasons, like air in the line, or an infusion is empty, etc. And then at 4am she does blood work as well. It is seriously hard to sleep in this place.
The Doctors ( I saw 11 different doctors from Oncology, Nephrology, ICU and Gastroenterology today) all basically told me the same thing about the fluids, except the Gastroenterologist, who told me Noah should not be drinking water, that is just a waste, since he hasn't been eating, he should be drinking Boost or Ensure instead. DUH! Don't know why I didn't think of that...
He also now has a peripheral IV in his arm, in addition to his VAD, so he can be hooked up to two IV pumps with a LOT of lines. It is pretty crazy. At all times, he is hooked up to a SAT monitor, which monitors how much oxygen is in his blood, oxygen (right now he is only on 0.5 liters, which isn't very much, but it is not good that he is on it at all), and two IV lines, and then every two hours they come in and check his temperature and blood pressure. tomorrow I will take a photo of IVan the second and put it up here. It is intimidating.
We had a nice visit from my cousin Debbie's son, Dayton. He is going to BCIT and came to bring Noah a gift from my Uncle Tony and Auntie Ann. It was a box full of Oilers stuff plus some Manitoba Moose foam antlers. They are so sweet... Noah thought they were pretty cool, though he couldn't quite figure out how to put them on, lol. It was cute. Thank you very much uncle Tony and Auntie Ann, it brightened up his day - he even smiled. Thanks also to Dayton for dropping by; it was nice to see you.
well, I really need to get to bed. Please continue to pray that Noah will start peeing. And peeing A LOT! I know, I feel for the guy - he really has no privacy...
I think it is time for bed, although there isn't much chance I'll be able to sleep; he is getting a platelet transfusion right now to keep his platelets up high enough for the defibratide. When they are done, the IV will beep, then the nurse will come in and start a flush, then that will beep, then she will start the Lasiks, then that will beep, then about an hour after that is done, we have to wake him up to pee. Then every two hours after that she will come in to check his vitals. Sometimes the IV beeps for other reasons, like air in the line, or an infusion is empty, etc. And then at 4am she does blood work as well. It is seriously hard to sleep in this place.
The Doctors ( I saw 11 different doctors from Oncology, Nephrology, ICU and Gastroenterology today) all basically told me the same thing about the fluids, except the Gastroenterologist, who told me Noah should not be drinking water, that is just a waste, since he hasn't been eating, he should be drinking Boost or Ensure instead. DUH! Don't know why I didn't think of that...
He also now has a peripheral IV in his arm, in addition to his VAD, so he can be hooked up to two IV pumps with a LOT of lines. It is pretty crazy. At all times, he is hooked up to a SAT monitor, which monitors how much oxygen is in his blood, oxygen (right now he is only on 0.5 liters, which isn't very much, but it is not good that he is on it at all), and two IV lines, and then every two hours they come in and check his temperature and blood pressure. tomorrow I will take a photo of IVan the second and put it up here. It is intimidating.
We had a nice visit from my cousin Debbie's son, Dayton. He is going to BCIT and came to bring Noah a gift from my Uncle Tony and Auntie Ann. It was a box full of Oilers stuff plus some Manitoba Moose foam antlers. They are so sweet... Noah thought they were pretty cool, though he couldn't quite figure out how to put them on, lol. It was cute. Thank you very much uncle Tony and Auntie Ann, it brightened up his day - he even smiled. Thanks also to Dayton for dropping by; it was nice to see you.
well, I really need to get to bed. Please continue to pray that Noah will start peeing. And peeing A LOT! I know, I feel for the guy - he really has no privacy...
Wednesday, October 26, 2011
Tuesday, October 25, 2011
An official diagnosis... (edited)
Veno-Occlusive Disease. I don't recommend googling it; it is scary. It is a disease that is more common in patients who have had a bone marrow transplant; it is a graft vs. host kind of thing. It is extremely rare in kids who have not had a transplant, but it can be caused by one of the chemotherapy drugs he is taking. Basically, the small blood vessels in his liver are all clotted up, so it can't do its job of filtering his blood. As a result, his abdomen is filled with fluid. He has "gained" about 5kg of fluid since Sunday. His chest and belly are all swollen and hard. This fluid is putting a lot of pressure on his lungs and they are starting to get a bit of fluid in them as well, so it is difficult for him to breathe. He is not able to lie flat, he needs to be almost upright to be able to breathe, but then his oxygen saturation goes down so now he is also on Oxygen.
VOD also just eats up platelets, I guess in all the clotting, so that is the reason he has now had 6 transfusions since last Tuesday. With all that Benedryl, he is just wiped out and he can't keep his eyes open for more than a few minutes. He is trying so hard to watch the hockey game, but he just can't stay awake!
His most annoying issue right now is the fluid- it is causing most of the problems- so they need to get him to pee it out.
What he is on right now: (I am not sure of the spelling of a couple of them)
Ondansetron - the anti-nausea drug, often given to him orally, because every time he has to stand up, sit up straight, etc, he vomits. He is now getting this IV; they are hoping to stop this nausea, because he hasn't eaten a thing since Saturday night and they want to insert an NG feeding tube.
Gravol and Nabilone - two more anti-nausea meds
Piptazo - antibiotics, because he had a fever yesterday
Morphine because his skin hurts from being all stretched out and his tummy is just uncomfortable.
Lasiks and spironolactone - two different diuretics: he needs to pee out all the fluid in his belly right now.
Ursodiol - a drug used to treat VOD don't know exactly what it does, but it works with the defibratide.
Defibratide - now this is the one that is interesting and where God really showed up- This drug is only made in Italy, it is very expensive and not only do you need special permission from a doctor to prescribe it, our doctor had to spend all day on the phone getting permission from the Government to give it to him. She got the permission (thank you Lord) and the hospital "happened" to have a secret stash from the last patient to have VOD here! It is very hard to get and sometimes it takes a couple of days to get here, but not today- he is actually getting some right now, and will be getting it every six hours for the next 48! The nurses are amazed. I'm not really surprised, jusst really thankful - I know who orchestrated all of that : )
The Defibratide can cause bleeding, so they need to make sure his platelets are always around 50, so they gave him some good platelets today and will probably do it again tomorrow.
They are also worried because he isn't peeing as much as they would like, so we now have a nephrologist on the team of doctors that comes and goes. One of them explained that Noah's kidneys can sense that his blood pressure is not quite right and when that happens, they can just kinda go to sleep and quit working and it is hard to wake them up again and then you have a problem of how to get all that fluid out! The Nephrologist is ok with the drugs he is on now and will check in again tomorrow.
They also moved us up to 3B, where they can keep a closer eye on him, and we now have our own nurse. The nurses often have two or three patients, but I guess they decided that Noah warranted his own nurse. Actually today he had two - there was a nurse from the Nursing Resource Team shadowing her so he could learn how to be a nurse in Oncology.
They (I keep saying "they" because I am not exactly sure who is making all of these decisions, lol) are fairly confident that by the time Tom gets here on Thursday morning, he will have turned the corner. They are really on top of this and I am very thankful for the care that he is receiving.
We also had a really nice visit with a friend, Alice Tromp, from Smithers today, thanks for coming Alice!
Please pray that the drugs that are working in his liver do exactly what they are supposed to do, and that his kidneys will be protected. Even as I write this I am reminded of Julie Monn - Djasngar's comment on yesterday's post (that made me bawl my head off, by the way...), that more detail doesn't matter - God already knows what Noah needs, we just need to trust that he will do what needs to be done. I am thankful that we can see His Hand so clearly in everything that happened today. Please keep Tom and the girls in your prayers, too; I still think it is much harder to be far away than to be here where the action is!
VOD also just eats up platelets, I guess in all the clotting, so that is the reason he has now had 6 transfusions since last Tuesday. With all that Benedryl, he is just wiped out and he can't keep his eyes open for more than a few minutes. He is trying so hard to watch the hockey game, but he just can't stay awake!
His most annoying issue right now is the fluid- it is causing most of the problems- so they need to get him to pee it out.
What he is on right now: (I am not sure of the spelling of a couple of them)
Ondansetron - the anti-nausea drug, often given to him orally, because every time he has to stand up, sit up straight, etc, he vomits. He is now getting this IV; they are hoping to stop this nausea, because he hasn't eaten a thing since Saturday night and they want to insert an NG feeding tube.
Gravol and Nabilone - two more anti-nausea meds
Piptazo - antibiotics, because he had a fever yesterday
Morphine because his skin hurts from being all stretched out and his tummy is just uncomfortable.
Lasiks and spironolactone - two different diuretics: he needs to pee out all the fluid in his belly right now.
Ursodiol - a drug used to treat VOD don't know exactly what it does, but it works with the defibratide.
Defibratide - now this is the one that is interesting and where God really showed up- This drug is only made in Italy, it is very expensive and not only do you need special permission from a doctor to prescribe it, our doctor had to spend all day on the phone getting permission from the Government to give it to him. She got the permission (thank you Lord) and the hospital "happened" to have a secret stash from the last patient to have VOD here! It is very hard to get and sometimes it takes a couple of days to get here, but not today- he is actually getting some right now, and will be getting it every six hours for the next 48! The nurses are amazed. I'm not really surprised, jusst really thankful - I know who orchestrated all of that : )
The Defibratide can cause bleeding, so they need to make sure his platelets are always around 50, so they gave him some good platelets today and will probably do it again tomorrow.
They are also worried because he isn't peeing as much as they would like, so we now have a nephrologist on the team of doctors that comes and goes. One of them explained that Noah's kidneys can sense that his blood pressure is not quite right and when that happens, they can just kinda go to sleep and quit working and it is hard to wake them up again and then you have a problem of how to get all that fluid out! The Nephrologist is ok with the drugs he is on now and will check in again tomorrow.
They also moved us up to 3B, where they can keep a closer eye on him, and we now have our own nurse. The nurses often have two or three patients, but I guess they decided that Noah warranted his own nurse. Actually today he had two - there was a nurse from the Nursing Resource Team shadowing her so he could learn how to be a nurse in Oncology.
They (I keep saying "they" because I am not exactly sure who is making all of these decisions, lol) are fairly confident that by the time Tom gets here on Thursday morning, he will have turned the corner. They are really on top of this and I am very thankful for the care that he is receiving.
We also had a really nice visit with a friend, Alice Tromp, from Smithers today, thanks for coming Alice!
Please pray that the drugs that are working in his liver do exactly what they are supposed to do, and that his kidneys will be protected. Even as I write this I am reminded of Julie Monn - Djasngar's comment on yesterday's post (that made me bawl my head off, by the way...), that more detail doesn't matter - God already knows what Noah needs, we just need to trust that he will do what needs to be done. I am thankful that we can see His Hand so clearly in everything that happened today. Please keep Tom and the girls in your prayers, too; I still think it is much harder to be far away than to be here where the action is!
Monday, October 24, 2011
A bit of an update...
Ok, so this morning, he was getting platelets, and the dr. came in and examined Noah and noticed that his belly seemed a bit swollen, and when she pressed it, it was quite sore. They sent him for an x ray of his abdomen, and while that was happening, the x ray techs noticed something in his lungs so they took a chest x ray too. What they noticed is that Noah has pneumonia. With no symptoms. That would account for his fever. Yes'm he now has a fever. 38.7 at last check.
The other thing they are checking is his liver function and when he peed this morning, his urine was positive for calcium, so they want to check for kidney stones. He will go for an ultrasound pretty soon.
One hour after his platelets, they checked to see if there was any rise at all, and his count was 22, which is still considered critical, so after they finish the blood transfusion, they will do more platelets. Hopefully these stay in his system a little longer.
He is quite uncomfortable because of the swelling of his belly so they gave him morphine to help with that, but he doesn't seem to be improving too quickly.
He will be going on Morphine and antibiotics until this all gets figured out. It all seems to be random things all happening at the same time. Odd indeed....
On Facebook, I posted an update just like this and when it showed up on my newsfeed, this post was directly beneath it:
"We live in a broken world full of broken people. But isn’t it comforting to know God isn’t ever broken? He isn’t ever caught off guard,... taken by surprise, or shocked by what happens next. He can take our worst and add His best. We just have to make the choice to stay with Him and keep following Him through it all."
The other thing they are checking is his liver function and when he peed this morning, his urine was positive for calcium, so they want to check for kidney stones. He will go for an ultrasound pretty soon.
One hour after his platelets, they checked to see if there was any rise at all, and his count was 22, which is still considered critical, so after they finish the blood transfusion, they will do more platelets. Hopefully these stay in his system a little longer.
He is quite uncomfortable because of the swelling of his belly so they gave him morphine to help with that, but he doesn't seem to be improving too quickly.
He will be going on Morphine and antibiotics until this all gets figured out. It all seems to be random things all happening at the same time. Odd indeed....
On Facebook, I posted an update just like this and when it showed up on my newsfeed, this post was directly beneath it:
"We live in a broken world full of broken people. But isn’t it comforting to know God isn’t ever broken? He isn’t ever caught off guard,... taken by surprise, or shocked by what happens next. He can take our worst and add His best. We just have to make the choice to stay with Him and keep following Him through it all."
Amen. He sees Noah and he knows exactly what is happening. Lord, please help the doctors to find it, too.... please heal Noah...
he is a sicko...
We are currently at the hospital. We came here yesterday at around 10 am because when he threw up in the morning, there was dried blood in it (sorry for the graphic detail, that is one of the things that alerted me to the fact his platelets were low). He also had some strange bruising on his chest and shoulder, which is another indication. So we came to emerg, they did bloodwork and when it came back, his platelets were below 5! Now this is very strange, because we just spent all day Friday at the clinic, where he had a platelet and a hemoglobin transfusion. He didn't have a fever, but he did continue vomiting for a couple of hours. They brought us up to the ward, where they gave him some benedryl and then the platelets. When we arrived the doctor took one look at him and said, "I think we'll be keeping you here..." Rats. I have to admit, he looked pretty bad; very pale with dark circles under his eyes.
Thankfully my Uncle Ken and Aunt Helene came in the afternoon, so I could bring the RMH van back there and pick up some clothes, etc. Uncle Ken stayed with Noah and they watched a movie together.
During the evening, Noah went to the bathroom and his urine was red, so they tested it, looking for blood, but it tested negative. He went to sleep at around 9 and fairly shortly after that his temperature started going up - it went up as high as 38.4 at 11:30, which is 0.1 degrees away from a fever (38.5), at whcih point they know there is some sort of infection and immediately put him on antibiotics. It never did go any higher than that, thankfully, and it is now down to 37.7, which is still high for him, but not technically a fever.
They always do bloodwork at 4am, and when those results came back, his platelets were again below 5! His hemoglobin is also low-ish again, so they are thinking about doing another red cell transfusion as well. He is getting the platelets right now. SO weird!!!
I am not sure if I explained what platelets are, but just in case you don't know, they are basically the part of the blood that forms clots, so if a person has low platelets, his or her blood doesn't clot, and they can bleed to death. Right now Noah can't even brush his teeth, because his gums could bleed and it would be really hard to stop it. He has all these little spots where the blood is just kinda leaking out of his capillaries and making little tiny bruises. His urine is still red, and one possible cause of that is that his blood is just leaching into his bladder or kidneys. Another possiblity is that he is so dehydrated his kidneys are just not working that well. Not sure what is going on...
He was throwing up again after 5 am so they gave him Gravol, which didn't seem to work until about 6:30 , but then they gave him Benedryl too, so he is REALLY tired! Poor guy.
His breakfast just arrived, so I am going to try to get him to eat some of it.... Please pray that they figure out what is happening with him-especially what is going on with his platelets- soon!
Thankfully my Uncle Ken and Aunt Helene came in the afternoon, so I could bring the RMH van back there and pick up some clothes, etc. Uncle Ken stayed with Noah and they watched a movie together.
During the evening, Noah went to the bathroom and his urine was red, so they tested it, looking for blood, but it tested negative. He went to sleep at around 9 and fairly shortly after that his temperature started going up - it went up as high as 38.4 at 11:30, which is 0.1 degrees away from a fever (38.5), at whcih point they know there is some sort of infection and immediately put him on antibiotics. It never did go any higher than that, thankfully, and it is now down to 37.7, which is still high for him, but not technically a fever.
They always do bloodwork at 4am, and when those results came back, his platelets were again below 5! His hemoglobin is also low-ish again, so they are thinking about doing another red cell transfusion as well. He is getting the platelets right now. SO weird!!!
I am not sure if I explained what platelets are, but just in case you don't know, they are basically the part of the blood that forms clots, so if a person has low platelets, his or her blood doesn't clot, and they can bleed to death. Right now Noah can't even brush his teeth, because his gums could bleed and it would be really hard to stop it. He has all these little spots where the blood is just kinda leaking out of his capillaries and making little tiny bruises. His urine is still red, and one possible cause of that is that his blood is just leaching into his bladder or kidneys. Another possiblity is that he is so dehydrated his kidneys are just not working that well. Not sure what is going on...
He was throwing up again after 5 am so they gave him Gravol, which didn't seem to work until about 6:30 , but then they gave him Benedryl too, so he is REALLY tired! Poor guy.
His breakfast just arrived, so I am going to try to get him to eat some of it.... Please pray that they figure out what is happening with him-especially what is going on with his platelets- soon!
Friday, October 21, 2011
Yeah, we were on TV, no big deal....
I barely slept that night- all these thoughts and answers to the potential questions they had given me were swirling around in my head. When the alarm rang at 5:30 I could barely get out of bed... but then the nerves took over. We got ready and jumped in the car at 6:15. We drove from Marine Drive all the way to Burnaby and it only took us 1/2 an hour! I was worried about the traffic, but it wasn't bad at all!
We arrived and the security guard signed us in, gave us our passes, and brought us down to the green room to wait until it was time. Richard Pass, the CEO of Ronald Mc Donald House met us there and went in with us to the studio. I wasn't sure if he was going to be on air or not, but he was, and boy, was I ever glad!
The studio is just one big green screen! I didn't expect that at all. There was the desk where they sit on one side of the room, then beside that is a big space where the weather person (Wesla Wong) was doing the weather while we were being seated on the circular red couch across from the desk and having our mics put on, etc. Between the desk and the couch were two big monitors and three cameras, mounted on tracks on the ceiling and moving on these robotic looking arms. Attached to the cameras were teleprompters which told Sophie Lui and Steve Darling what to say. I don't know what y'all could see, but behind the couch was just a green wall.
They introduced themselves, asked us a couple of questions and then we got started. It is a bit of a blur, but what I do remember is that all of the time I spent preparing and rehearsing answers to questions was for naught. They didn't ask me even one of those questions, lol! The one they did ask was one that Richard had kind of prepared me for in advance but what came out of my mouth was NOT what he wanted me to say ( I felt like a bit of an idiot....) but it was ok, because he jumped in with the right answer, lol. Like I said, I was really glad he was there! They asked Noah about what he likes to do at RMH and the topic turned to foosball. Both Steve and Sophie told him they were really good at it, but five seconds later, when the camera turned off, Sophie turned to Noah and said, 'I've never played foosball in my life.' it was funny....
So yeah, it was fun. We had to go to the hospital later that morning and so many people said, "hey! I saw you on TV this morning!" It was cool - we felt famous! The next morning, Noah had an LP and just as he was going under I mentioned something about our hotel and the doctor said, "I thought you were staying at RMH?" and Noah, (who was under the influence) said, "If you had watched us on TV yesterday, you would have known that....!" It was hilarious. None of them had seen it and were totally surprised. I am still laughing about it as I write this... it was so funny...
The doctors and nurses LOVE it when Noah is going under for his LPs. He is absolutely hilarious. He says the craziest things. He often talks about his wish, where his first idea was to ask to go the International Space Station. In space. He blames me for not being able to do that. He actually wrote it on the form: I wanted to go to the International Space Station, but my mom said no." LOL
Anyway, as a thank you for going on TV, the hospital gave us tickets to the Canucks game last night that someone had donated. It was amazing. Apparently there is a section of the arena where they have WAITERS. We had a waiter. And a menu. Again, no big deal. We were in section 104, in row 7. It was great, we were just up from the face off circle to the left of Luongo. Noah kept his promise to Dan Hamhuis and cheered for Vancouver. When Dan took Noah into the dressing room, he made a deal with Noah, that as long as they weren't playing the Oilers, he would cheer for the Canucks. It was cute. So, Noah now feels like it might be ok to cheer for Vancouver without compromising his commitment to the Oilers.
Today we are at the hospital. This week has been a bit of a write-off as far as school work is concerned. Monday was ok, Tuesday Noah had to come here for blood work at 9:30, where they determined that he needed a platelet transfusion before he could have his LP on Wednesday. They took a long time to arrive and because he reacts to platelets, he gets Benedryl beforehand. It is just 35 mg, but before he even got the platelets, he couldn't even focus, so he laid down on the bed and conked out. He was out until about 4:00! I finally got so bored, I pretty well carried him out of there.
It was too bad he was so affected by the Benedryl, because we had a visit from the Willistons, Wren's family. They were there for a ceremony- complete with a trophy- because Wren is now officially finished her treatment. I absolutely love the idea of a trophy to end off treatment, like it is a race to be won. In Noah's case, it is more like a marathon, but the analogy still works.
On Wednesday, his LP was quick and as soon as he was allowed to sit up, an hour after the procedure, I rushed him out. I did NOT want to sit here all day again. Unfortunately, I may have rushed him a little too soon; he was stumbling a little while we walked to the car, lol. It was funny. To be honest, I felt a little bad...but it was still funny. At least he also saw the humour in it. He did spend the entire afternoon reading a novel for his next novel study and he finished it, too, so it wasn't a total write-off.
Yesterday (Thursday) we had a great visit from our good friend Aleeda!! She came with us to Noah's appointment, saw how a chemo treatment goes, then we showed her all around the hospital, and RMH. It was great. We had a lot of time to visit and drink tea. : ) Then we went to the game after Aleeda left.
This morning, we had to come for chemo and blood work because they thought he might need a red cell transfusion. Our appointment was at 9:30. It is now 5pm, and we are still here, and not leaving anytime soon. Well, probably within the hour, but still... Anyway, they did the bloodwork and his platelets were at 11(!!!!) 20 is the critical level. He just had platelets on Tuesday! They dropped like crazy. I did notice he had a funny mark on his neck, like a bruise, which only happens when his platelets are low, but I thought, he just had some, so he was ok. Yikes. He also needed red cells, so first he had benedryl (made him too tired to do anything) then platelets, then red cells. Platelets take one hour and red cells take three hours. Another looooong day. It looks like we are the only ones left in the clinic, too, lol.
Oh, they just came to start the flush, so it looks like we will be outta here soon! Yay! We are going to Dan and Sarah Hamhuis' house for dinner and my good friend Elaine will also be there (Double Yay!!)
I hope everyone has a good weekend and for all you Smithereens, enjoy the snow!!!
We arrived and the security guard signed us in, gave us our passes, and brought us down to the green room to wait until it was time. Richard Pass, the CEO of Ronald Mc Donald House met us there and went in with us to the studio. I wasn't sure if he was going to be on air or not, but he was, and boy, was I ever glad!
The studio is just one big green screen! I didn't expect that at all. There was the desk where they sit on one side of the room, then beside that is a big space where the weather person (Wesla Wong) was doing the weather while we were being seated on the circular red couch across from the desk and having our mics put on, etc. Between the desk and the couch were two big monitors and three cameras, mounted on tracks on the ceiling and moving on these robotic looking arms. Attached to the cameras were teleprompters which told Sophie Lui and Steve Darling what to say. I don't know what y'all could see, but behind the couch was just a green wall.
They introduced themselves, asked us a couple of questions and then we got started. It is a bit of a blur, but what I do remember is that all of the time I spent preparing and rehearsing answers to questions was for naught. They didn't ask me even one of those questions, lol! The one they did ask was one that Richard had kind of prepared me for in advance but what came out of my mouth was NOT what he wanted me to say ( I felt like a bit of an idiot....) but it was ok, because he jumped in with the right answer, lol. Like I said, I was really glad he was there! They asked Noah about what he likes to do at RMH and the topic turned to foosball. Both Steve and Sophie told him they were really good at it, but five seconds later, when the camera turned off, Sophie turned to Noah and said, 'I've never played foosball in my life.' it was funny....
So yeah, it was fun. We had to go to the hospital later that morning and so many people said, "hey! I saw you on TV this morning!" It was cool - we felt famous! The next morning, Noah had an LP and just as he was going under I mentioned something about our hotel and the doctor said, "I thought you were staying at RMH?" and Noah, (who was under the influence) said, "If you had watched us on TV yesterday, you would have known that....!" It was hilarious. None of them had seen it and were totally surprised. I am still laughing about it as I write this... it was so funny...
The doctors and nurses LOVE it when Noah is going under for his LPs. He is absolutely hilarious. He says the craziest things. He often talks about his wish, where his first idea was to ask to go the International Space Station. In space. He blames me for not being able to do that. He actually wrote it on the form: I wanted to go to the International Space Station, but my mom said no." LOL
Anyway, as a thank you for going on TV, the hospital gave us tickets to the Canucks game last night that someone had donated. It was amazing. Apparently there is a section of the arena where they have WAITERS. We had a waiter. And a menu. Again, no big deal. We were in section 104, in row 7. It was great, we were just up from the face off circle to the left of Luongo. Noah kept his promise to Dan Hamhuis and cheered for Vancouver. When Dan took Noah into the dressing room, he made a deal with Noah, that as long as they weren't playing the Oilers, he would cheer for the Canucks. It was cute. So, Noah now feels like it might be ok to cheer for Vancouver without compromising his commitment to the Oilers.
Today we are at the hospital. This week has been a bit of a write-off as far as school work is concerned. Monday was ok, Tuesday Noah had to come here for blood work at 9:30, where they determined that he needed a platelet transfusion before he could have his LP on Wednesday. They took a long time to arrive and because he reacts to platelets, he gets Benedryl beforehand. It is just 35 mg, but before he even got the platelets, he couldn't even focus, so he laid down on the bed and conked out. He was out until about 4:00! I finally got so bored, I pretty well carried him out of there.
It was too bad he was so affected by the Benedryl, because we had a visit from the Willistons, Wren's family. They were there for a ceremony- complete with a trophy- because Wren is now officially finished her treatment. I absolutely love the idea of a trophy to end off treatment, like it is a race to be won. In Noah's case, it is more like a marathon, but the analogy still works.
On Wednesday, his LP was quick and as soon as he was allowed to sit up, an hour after the procedure, I rushed him out. I did NOT want to sit here all day again. Unfortunately, I may have rushed him a little too soon; he was stumbling a little while we walked to the car, lol. It was funny. To be honest, I felt a little bad...but it was still funny. At least he also saw the humour in it. He did spend the entire afternoon reading a novel for his next novel study and he finished it, too, so it wasn't a total write-off.
Yesterday (Thursday) we had a great visit from our good friend Aleeda!! She came with us to Noah's appointment, saw how a chemo treatment goes, then we showed her all around the hospital, and RMH. It was great. We had a lot of time to visit and drink tea. : ) Then we went to the game after Aleeda left.
This morning, we had to come for chemo and blood work because they thought he might need a red cell transfusion. Our appointment was at 9:30. It is now 5pm, and we are still here, and not leaving anytime soon. Well, probably within the hour, but still... Anyway, they did the bloodwork and his platelets were at 11(!!!!) 20 is the critical level. He just had platelets on Tuesday! They dropped like crazy. I did notice he had a funny mark on his neck, like a bruise, which only happens when his platelets are low, but I thought, he just had some, so he was ok. Yikes. He also needed red cells, so first he had benedryl (made him too tired to do anything) then platelets, then red cells. Platelets take one hour and red cells take three hours. Another looooong day. It looks like we are the only ones left in the clinic, too, lol.
Oh, they just came to start the flush, so it looks like we will be outta here soon! Yay! We are going to Dan and Sarah Hamhuis' house for dinner and my good friend Elaine will also be there (Double Yay!!)
I hope everyone has a good weekend and for all you Smithereens, enjoy the snow!!!
Monday, October 17, 2011
We're on the news tomorrow!!
Hi everyone, sorry about the long break between posts - I was still having laptop issues, but no more! I brought my laptop in to be fixed and it is literally good as new; Windows has been re-loaded and all the settings are back to factory settings. I did lose a few photos, but I think we are generally ok.
Yes, about the news... Noah and I have been asked by Ronald Mc Donald House to do a TV interview regarding the new House on Global TV. Live. Tomorrow morning. I'm terrified. Absolutely terrified. First of all, I feel a bit like Moses, except that I am rather "quick of speech", as opposed to "slow of speech", lol. It happens especially when I am nervous. So, if you find yourself praying, please pray that God will give me words to say and that those words will be intelligible. I thank you in advance. Second of all, I don't have anything I want to wear on TV. I am not prepared for this. I admit I did spend a long time in Winners this evening, but I only came out with a pair of pants. Which probably no one will see, but oh well. I know about them and they make me feel more confident. Isn't it odd how pants can make you feel more (or less) confident?
In all seriousness, though, I really want to do a good job; there is one more hurdle to jump, so to speak, in the planning of the new House and that is the rezoning of the land on the hospital grounds where the new RMH will be built. The Vancouver City Council will vote tomorrow night, so RMH and the BC Children's Hospital Foundation want to raise awareness beforehand. Another Mom, Susan, from the House has been asked to speak at that meeting.
We will be on Global at 7:20 am. You can join Tom in laughing at me. In fact he has already started. I just talked to him, and he was laughing at me. : ( It's ok, I think I would probably do the same if he were going on TV, I'd just be really happy it isn't me. Except this time it is, lol.
Anyway, the Hospital is going to give me a DVD of the interview, so for all you readers outside of BC, I will post it here as soon as I receive it.
Noah's treatments are going well, he hasn't had any fevers, nor did he ever get that cold my parents had at Thanksgiving, thanks be to God! He has blood work and possibly a platelet transfusion tomorrow, then a Lumbar Puncture (spinal tap) on Wednesday morning along with more chemo that day and everyday until Saturday. Then on Monday we start another two weeks of Erwinia injections: Monday, Wednesday and Friday. The second Friday which I am pretty sure is Nov 4, we get to come home!
Last week, Dr. Lucy prepared us for the idea of spending Christmas in Vancouver. I was hoping we wouldn't have to, but at least our situation is that Tom has those two weeks off, so we can be together, where ever we are. And it will be ok. In fact it might be really nice. One never can tell.
Well, I have to go to bed. I just hope I can sleep with all these thoughts swirling around in my head. I'll let you all know how it goes tomorrow! Good night!
Yes, about the news... Noah and I have been asked by Ronald Mc Donald House to do a TV interview regarding the new House on Global TV. Live. Tomorrow morning. I'm terrified. Absolutely terrified. First of all, I feel a bit like Moses, except that I am rather "quick of speech", as opposed to "slow of speech", lol. It happens especially when I am nervous. So, if you find yourself praying, please pray that God will give me words to say and that those words will be intelligible. I thank you in advance. Second of all, I don't have anything I want to wear on TV. I am not prepared for this. I admit I did spend a long time in Winners this evening, but I only came out with a pair of pants. Which probably no one will see, but oh well. I know about them and they make me feel more confident. Isn't it odd how pants can make you feel more (or less) confident?
In all seriousness, though, I really want to do a good job; there is one more hurdle to jump, so to speak, in the planning of the new House and that is the rezoning of the land on the hospital grounds where the new RMH will be built. The Vancouver City Council will vote tomorrow night, so RMH and the BC Children's Hospital Foundation want to raise awareness beforehand. Another Mom, Susan, from the House has been asked to speak at that meeting.
We will be on Global at 7:20 am. You can join Tom in laughing at me. In fact he has already started. I just talked to him, and he was laughing at me. : ( It's ok, I think I would probably do the same if he were going on TV, I'd just be really happy it isn't me. Except this time it is, lol.
Anyway, the Hospital is going to give me a DVD of the interview, so for all you readers outside of BC, I will post it here as soon as I receive it.
Noah's treatments are going well, he hasn't had any fevers, nor did he ever get that cold my parents had at Thanksgiving, thanks be to God! He has blood work and possibly a platelet transfusion tomorrow, then a Lumbar Puncture (spinal tap) on Wednesday morning along with more chemo that day and everyday until Saturday. Then on Monday we start another two weeks of Erwinia injections: Monday, Wednesday and Friday. The second Friday which I am pretty sure is Nov 4, we get to come home!
Last week, Dr. Lucy prepared us for the idea of spending Christmas in Vancouver. I was hoping we wouldn't have to, but at least our situation is that Tom has those two weeks off, so we can be together, where ever we are. And it will be ok. In fact it might be really nice. One never can tell.
Well, I have to go to bed. I just hope I can sleep with all these thoughts swirling around in my head. I'll let you all know how it goes tomorrow! Good night!
Wednesday, October 5, 2011
Counts are good,but we're not going
Noah's counts were just high enough that he could go back for treatment, but because he has c. Diff, and we haven't been home that long, they decided to let us have a few more days. His neutrophils are so good he could even go to school, if he didn't
have c. Diff. (And if there was school.... our school has Teacher's
Convention this week and they have Thurs and Fri off as well as Monday.
It is a nice break.) Our nurse told me that when she saw Noah's results, she said, " Oh no! His counts are good!" which she never says in the same sentence, lol! We are scheduled to go back for a Wednesday morning appointment.
I am not ready to go back. In fact, I don't ever want to go back there. I want to stay home with my family. This really sucks.
However, I am thankful that they gave us a few extra days. He needs to go back for bloodwork on Friday, and I am hoping that his counts will actually go down again so we can stay a few more days. He is not on a study, so there is more flexibility in that regard; otherwise they have to stick to a strict schedule. I have been happy on more than one occasion that he is not on any study. It has been easier for us than other kids who are on the study.
Here at home, I got to go to an assembly led by Alyson's class today, I watched Miranda do a play with her classmates, and brought Noah for a trumpet lesson ( he absolutely LOVES playing the trumpet). It was so nice to just do all the normal mom stuff, it made me sad for my girls who don't have their mom for all those things; but it also made me glad that they have their dad right there all the time. It is so perfect that he is a teacher at their school. God really has every detail looked after, doesn't he?
It is bedtime. I have a lot of work to do tomorrow. My mother is here, helping with painting and organizing my house. It really needed some work, and we were superstars today. Thanks mom!
g'nite all! and Happy Thanksgiving to you if I don't end up writing again before that. Please join us in thanking God for his faithfulness and love for each one of us.
I am not ready to go back. In fact, I don't ever want to go back there. I want to stay home with my family. This really sucks.
However, I am thankful that they gave us a few extra days. He needs to go back for bloodwork on Friday, and I am hoping that his counts will actually go down again so we can stay a few more days. He is not on a study, so there is more flexibility in that regard; otherwise they have to stick to a strict schedule. I have been happy on more than one occasion that he is not on any study. It has been easier for us than other kids who are on the study.
Here at home, I got to go to an assembly led by Alyson's class today, I watched Miranda do a play with her classmates, and brought Noah for a trumpet lesson ( he absolutely LOVES playing the trumpet). It was so nice to just do all the normal mom stuff, it made me sad for my girls who don't have their mom for all those things; but it also made me glad that they have their dad right there all the time. It is so perfect that he is a teacher at their school. God really has every detail looked after, doesn't he?
It is bedtime. I have a lot of work to do tomorrow. My mother is here, helping with painting and organizing my house. It really needed some work, and we were superstars today. Thanks mom!
g'nite all! and Happy Thanksgiving to you if I don't end up writing again before that. Please join us in thanking God for his faithfulness and love for each one of us.
Tuesday, October 4, 2011
C. Difficile again....
Yep, Noah has c. Difficile again. Rats. He hasn't been feeling well all weekend, and I was worried he would have to be admitted or go back to Children's but the Dr. says that as long as he takes his anti-biotics and does a lot of handwashing and using hand sanitizer, he is ok to do whatever, so that is a relief.
He needs to go for bloodwork tomorrow to see if his counts are good enough to go back for treatment on Friday. I really hope they are low. I feel like we just got here, I am not ready to go back yet....
He needs to go for bloodwork tomorrow to see if his counts are good enough to go back for treatment on Friday. I really hope they are low. I feel like we just got here, I am not ready to go back yet....
Saturday, October 1, 2011
Phew! We checked out of RMH this afternoon, ate dinner and rushed to the football game. Noah didn't really want to go. He has been having quite a lot of pain the last couple of days. His hips were sore so it was hard for him to walk, then last night, he couldn't get to sleep because his knees were too sore. He was actually crying because they hurt so much. He doesn't cry very much any more, so I knew it was bad. I called the oncologist on call at Children's and she told me I could give him Morphine, so I did, and after about half an hour he fell asleep, only to wake up four hours later, needing more. When I talked to the docs about it today, they said it was the Dexamethasone, and that we can expect this and worse for the next few days. He is walking "like an old man", at least, according to one of the doctors. Yikes! He had a nap this afternoon, but he was still so tired, he kept saying "it's ok if we don't make it to the game." i felt bad because I actuallly drove a house van full of people, and Noah really wanted to leave after the first half (even though we had the best seats- 35 yard line, 3 rows up from the Lions sideline- they were great!) but we really couldn't. I had been chosen to drive because I knew where to go, no one else did! He brightened up part way through, about the time the Eskimos challenged the ruling on the field on Simon's catch, if you were watching, lol.
He was ok til the end, but then we still had to get back to the house, get all of our bags and get to the hotel. We are staying at the Travelodge by the
airport because our flight HOME (yes we are going home tomorrow- I am so excited!!!) is at 7:45 am and we couldn't possibly check out of RMH in time. We gave a wake up call in 4.5 hours, so I should really get some sleep ...
So, to all of Noah's friends who have been saying, "Noah is so lucky! I wish i had leukemia!" i know some of you have been saying that this week... ; ) you should know that even though it seems like all Noah is doing is having fun and getting to do cool stuff while you guys have to go to school, he hasnt seen his dad or sisters for almost a whole month, he has to endure a lot of pain, a lot of needles (18 this month alone), medicine that makes him sad, people poking and prodding him all the time and CONTINUALLY bugging him to eat, etc. Leukemia really sucks. He would way rather be in school with you guys. He misses you a lot. He mostly only gets to hang out with his mom. How awful is that!?! Poor guy.... it has been a huge blessing that there have been so many fun things to distract him from all that other stuff! Isnt God good? He takes such good care of us.
This is another post from my phone, hopefully it isn't as fraught with errors as the last one. I can't really go back and read it over.
Tomorrow I will try and add a couple of pics from tonight. Good night all!
By the time most if you are reading this, we will be at home, snuggled on the couch with the rest of our family. Sigh, I can't wait....
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