As you know, Donavynn had surgery last week for new ear tubes and for his yearly post transplant lumbar puncture and bone marrow biopsy. I am happy to report that these will no longer be standard yearly tests because they were both negative! Both showed continued remission and his chimerisms showed 100% donor - which is exactly what we want!!! We are so grateful and our hearts are bursting with joy and gratitude. I can never thank his donor - Jessica - enough. Thank you honestly seems inadequate when you think about the fact that her donation literally SAVED his life. How many people can say that? That something they did for someone else ACTUALLY saved that persons life? As a nurse, I know that my knowledge and interventions have probably saved many lives - but this is on a whole other level. This goes beyond that... I think.
This has been such an incredibly long journey and of course it is not over. Once a child has cancer the journey is never really over, but knowing that he is considered a survivor and his transplant has been considered a success is so amazing. I can't begin to explain how it feels.
Our journey with the world of childhood cancer started when Donavynn was a mere 21 months old and I, his mother, was only 22 years old. I had no clue what was ahead for us all. I had many fears, and constant worry. Having been in nursing school at the time, with many friends and family members in the health care field I had a better understanding of it all than my husband, his father, did. I often wondered if navigating it all with knowledge was a gift or a curse. Would I have slept better if I was oblivious to all the risks? Would I have enjoyed the time with him more because it wouldn't have been so clouded with fear? Would every first have still made me wonder if it would be his only, or if he would miss out on many more firsts? To be honest, that fear I don't think will ever truly go away. I know I will always worry. I think that is just part of being a mother. It was haunting and painful and still is when the the fears creep in when people say things like "someday when he's a dad" or "when he starts driving". Those comments have always hurt a little, because the first thing that would pop into my head when they were said was "will that ever happen?" I don't know how to make that stop, but I do know that it isn't as prevalent anymore. The painful thoughts aren't always the first things that pop into my head when the future is discussed because now, I can picture it with him in it and for a long time, I wasn't sure if I should even entertain the thought of a future that had our boy in it. That felt like tempting fate, like setting myself up for heartache. The prayers and support we have received over the years from so many people have truly been amazing and I know are a large part of the reason that he is still with us. I truly believe, with all my heart that he is a miracle. I hope someday he will share his story with the world and show people that miracles do exist.
These possibly irrational thoughts still drive some of my actions to this day... for example, last night our youngest child had a fever at dinner time. I treated it like I normally would and daddy and I decided she should sleep with me so I could monitor her. I woke up at 3 am to hands of fire. Her temp was 103.7. I assumed she had an ear infection like she often does, but with her history like Donavynn's of alpha-one I worried that this could be pneumonia like she had in the spring because there were no other symptoms then either. I tried to give her something to bring her fever down but it came right back up. As a nurse I know all the things to do to help bring the fever down, could have went to Walmart to possibly see if they had suppositories though I think you have to ask for those... either way as a nurse I knew all the things to do. As a panicky mother of a cancer survivor I packed her tiny little booty in the van and took her to the ER. They all probably thought I was crazy, especially when every single test they did was negative and they ruled it a virus. But it made me feel better. If you haven't ever had to do the middle of the night rush to the hospital for a neutropenic child with cancer then I don't know how to make you understand what was going through my head last night or any other time that I probably jump the ER gun. I know in my mind that "normal" children don't need to go to the ER for a fever...
Anyway, enough of all that. This blog is pretty much my therapy - so if you are still reading - God bless you for struggling through my ramblings. Donavynn returns to school next week - he is finally starting to get a little excited - mostly because he has new clothes and can see his friends. I know I am going into this year a bit more relaxed because his case manager for his educational needs has already contacted me and we talked in length about his needs, my needs, my concerns etc. We are blessed to have her as an advocate for him. We've been pretty lucky through all of this to have many good advocates for him but had a few hiccups last year that sent me about over the edge so it is great knowing I don't have to worry this year because he has another "mama bear" advocating for him when I am not there.
I think that is all for now, should get some things done. Thanks for reading, thanks for praying. Please keep them coming!!!
Tuesday, August 16, 2016
Friday, August 12, 2016
Surgery and 5 Year Checks
Yesterday Donavynn went in for another set of ear tubes, his bone marrow biopsy, and lumbar puncture. It was a long day because we had to be there for his pulmonary function tests and fasting labs before his scheduled procedures.
Pulmonary Function Testing
Every year Donavynn needs to have PFT's to evaluate his lung function. This is for many reasons - one being the transplant that required high doses of chemotherapy but mostly because of the total body radiation he received. Of course, they shield the lungs for that but there are still risks. His extended ICU stay on the ventilator is another reason, and now with the diagnosis of alpha one antitrypsin deficiency - this diagnosis has prompted his transplant team to recommend another evaluation by the pulmonologist in addition to the yearly PFT's. I don't have the official test results but they did tell me yesterday that they looked good and that his overall function was down by about 4% - which she said is likely due to his recent growth because they evaluate with expectations based on the child's height. So basically they aren't worried about that slight drop - just think his lungs haven't caught up with his growth.
Other Results
I don't have the results from his fasting lipid panel or his bone marrow biopsy yet and only have partial results on his CSF (cerebral spinal fluid) - the cell count was normal and cytology is pending. Thus far it is good. Bone marrow results usually take a little longer and I expect to hear on the other results later today. I did receive his echocardiogram results the other day - normal with an ejection fraction of 61% - which is also normal.
Other Information
While waiting to go to the OR yesterday I spoke with Dr. Myers - his transplant physician. I asked him if all his results are normal if we could use the C word - cured. He said that many people do after the five-year marker but that he typically doesn't simply because he would feel terrible if a child he declared cured ended up being the very rare case that actually relapsed years later. I couldn't wait to get to the five-year point when this journey began - so eager to use that word, but as the day drew closer I began to fear it. Maybe, it is a jinx. So we have decided to use the word survivor and continue to discuss his status as remission for five years. No one knows what the future holds and childhood cancer survivors do have increased risks for a host of other problems as they age - including secondary cancers. So the fear never goes away, but we are going to continue to pray and be grateful for how far he has come through this incredibly difficult journey he was forced to take.
Surgery went well. They were able to get the T-tubes in - which are supposed to last longer than regular ear tubes. His right ear looked good - the old tube was out and there were no problems found. The left ear had the old tube still in place that had moved out slightly and crusted so when that was completely removed there was a small hole left that they expect to heal without a problem and they were able to get the tube in a better location. We are hoping these will help prevent some of the many sick days we expect with him when school starts since he is more susceptible to a variety of illnesses. Dr. Myers reported that everything went smooth with his part as well. Donavynn had some slight pain last night after we got home that was easily resolved with Tylenol and is no longer having any pain. I was grateful to have the team we had in the OR with him and an awesome nurse in the PACU - we worked together a few years ago in the ICU and she is not only an awesome nurse but a wonderful person - so I was happy to know she was taking care of my boy as he recovered from anesthesia.
I think that is all I have for now. I will keep everyone posted as the results come in. Thank you all for the continued prayers! We are truly blessed.
Pulmonary Function Testing
Every year Donavynn needs to have PFT's to evaluate his lung function. This is for many reasons - one being the transplant that required high doses of chemotherapy but mostly because of the total body radiation he received. Of course, they shield the lungs for that but there are still risks. His extended ICU stay on the ventilator is another reason, and now with the diagnosis of alpha one antitrypsin deficiency - this diagnosis has prompted his transplant team to recommend another evaluation by the pulmonologist in addition to the yearly PFT's. I don't have the official test results but they did tell me yesterday that they looked good and that his overall function was down by about 4% - which she said is likely due to his recent growth because they evaluate with expectations based on the child's height. So basically they aren't worried about that slight drop - just think his lungs haven't caught up with his growth.
Other Results
I don't have the results from his fasting lipid panel or his bone marrow biopsy yet and only have partial results on his CSF (cerebral spinal fluid) - the cell count was normal and cytology is pending. Thus far it is good. Bone marrow results usually take a little longer and I expect to hear on the other results later today. I did receive his echocardiogram results the other day - normal with an ejection fraction of 61% - which is also normal.
Other Information
While waiting to go to the OR yesterday I spoke with Dr. Myers - his transplant physician. I asked him if all his results are normal if we could use the C word - cured. He said that many people do after the five-year marker but that he typically doesn't simply because he would feel terrible if a child he declared cured ended up being the very rare case that actually relapsed years later. I couldn't wait to get to the five-year point when this journey began - so eager to use that word, but as the day drew closer I began to fear it. Maybe, it is a jinx. So we have decided to use the word survivor and continue to discuss his status as remission for five years. No one knows what the future holds and childhood cancer survivors do have increased risks for a host of other problems as they age - including secondary cancers. So the fear never goes away, but we are going to continue to pray and be grateful for how far he has come through this incredibly difficult journey he was forced to take.
Surgery went well. They were able to get the T-tubes in - which are supposed to last longer than regular ear tubes. His right ear looked good - the old tube was out and there were no problems found. The left ear had the old tube still in place that had moved out slightly and crusted so when that was completely removed there was a small hole left that they expect to heal without a problem and they were able to get the tube in a better location. We are hoping these will help prevent some of the many sick days we expect with him when school starts since he is more susceptible to a variety of illnesses. Dr. Myers reported that everything went smooth with his part as well. Donavynn had some slight pain last night after we got home that was easily resolved with Tylenol and is no longer having any pain. I was grateful to have the team we had in the OR with him and an awesome nurse in the PACU - we worked together a few years ago in the ICU and she is not only an awesome nurse but a wonderful person - so I was happy to know she was taking care of my boy as he recovered from anesthesia.
I think that is all I have for now. I will keep everyone posted as the results come in. Thank you all for the continued prayers! We are truly blessed.
Wednesday, August 10, 2016
Upcoming Surgery
I meant to write over the weekend but things have been crazy busy as usual. So as I posted on his Facebook page he had a few of his yearly checkups last week. He does however have more to come. This year his appointments were more scattered out than usual for some reason. So last week he saw...
Ophthalmology - his vision is fine but tests did reveal that he has some minor dry eye. This can be a result of the treatment/BMT, and likely is. They ordered artificial tears 4 times/day and an eye ointment at bedtime and want to see him again next month to see how he is doing.
Cardiology - EKG was normal. I have not heard from anyone regarding his Echo results - so I am assuming that they are also normal.
BMT clinic - they did a full work up and a variety of labs - all was normal there as well.
He then went for his preadmission testing to prepare for his surgery tomorrow. At this time he is scheduled for his yearly bone marrow biopsy, lumbar puncture, and yet another set of ear tubes. I have lost count at this point how many sets he has had. Of course, as always I am worried. They said that everything together will probably take an hour and his surgery is supposed to begin at 1pm tomorrow so if you could say some prayers for him and the doctors then that would be great.
Before all of this tomorrow he will be seen in the pulmonology clinic for his pulmonary function tests. Those have been good in the past but we must watch them closely for a variety of reasons - one being the amount of radiation he received, the other being his alpha one antitrypsin deficiency. So he will have his PFTs tomorrow and then actually see the pulmonologist next month when he goes for the remained of her his appointments - dental, dermatology, and the recheck at ophthalmology. This time of year is always busy for him as they check everything out and make sure he has not developed any additional late effects of treatment.
It is hard to believe that he is 12 years old already. It doesn't seem possible. We are so grateful and so blessed. He will be starting 7th grade this year. I can hardly believe that either! He has had a great summer. Lots of down time, lots of play time with his sisters, time in the pool and a trip to St. Louis to visit friends/family. We had a great time. We have really enjoyed our family time! But there is one thing he always does alone... He went to Camp Hope once again this summer. It is one of his favorite things and he looks forward to it all year long. He also holds information about camp at ransom all year long :) So we hear tidbits about things he did throughout the whole year instead of him blurting it all out at once when we pick him up. He continues to be the quiet type most of the time. I think he gets that from his father. One of the children he knew from camp passed away recently - I think that was the first time we shared a loss of a fellow warrior with him. We have kept him in the dark a lot because we don't want to worry him. He lost a fellow transplant warrior friend while he was in transplant and we did not tell him that. I couldn't bear it. He had enough to worry about. To this day I still haven't told him. He is an anxious kid and often times when he hears things like that they tumble around in his brain too much. He was down for the entire day when he learned about the passing of his camp buddy. This time I thought he was old enough to know though... still not sure if I made the right decision. He knows the dangers of all he and his camp friends have endured but I think he buries that most of the time and pretends it isn't a real problem. It is heartbreaking for children to lose friends to cancer, for families to lose children to this beast. There have been so many stories lately of children lost - it's heartbreaking and overwhelming... Survivors guilt is also a real thing. I don't post on our support group pages very often because so many are sharing stories of heartbreak that it doesn't seem right to share how things are going now. I also always worry if I'm going to jinx it. I think that is part of the reason I am so worried about tomorrow. He is more than 5 years post transplant now. This is supposed to be a thrilling time but part of my doesn't want to tempt fate. Part of me will always worry I suppose. No amount of therapy can help with that. When you come so close to losing your child - even once, let alone multiple times - that worry stays there, it hides most of the time but rears its ugly head when tests are coming up. You can look at your child and think - he's been fine, he looks good, energy is good, appetite is good - so he's fine - but then that ugly beast speaks up and you hear "but what if something is going on that you CAN'T see! What if the test show that there is something bad lurking below" It's hard to make people understand that. If you haven't ever been there it is pretty impossible to understand it. Ok well enough of that - I'm stressing myself out more now.
Sooo... Donavynn is not looking forward to returning to school - because he missed so much time for treatment school is harder for him and he never really got into the groove of it early on like most kids do. He hates that he has homework every night usually because it takes him a long time to complete even the simple assignments because by the end of the day his brain is just simply exhausted. So I don't blame him. We are going to try to find other ways to help him with all of that this year, though we aren't really sure how we can do things differently than we have been. We are open to any tips. :)
I think that is all for now. This ended up being far more rambling that I intended so if you stuck with me this long - thanks. :) And as always thanks for the continued prayers for healing and health for our special boy!!!
Ophthalmology - his vision is fine but tests did reveal that he has some minor dry eye. This can be a result of the treatment/BMT, and likely is. They ordered artificial tears 4 times/day and an eye ointment at bedtime and want to see him again next month to see how he is doing.
Cardiology - EKG was normal. I have not heard from anyone regarding his Echo results - so I am assuming that they are also normal.
BMT clinic - they did a full work up and a variety of labs - all was normal there as well.
He then went for his preadmission testing to prepare for his surgery tomorrow. At this time he is scheduled for his yearly bone marrow biopsy, lumbar puncture, and yet another set of ear tubes. I have lost count at this point how many sets he has had. Of course, as always I am worried. They said that everything together will probably take an hour and his surgery is supposed to begin at 1pm tomorrow so if you could say some prayers for him and the doctors then that would be great.
Before all of this tomorrow he will be seen in the pulmonology clinic for his pulmonary function tests. Those have been good in the past but we must watch them closely for a variety of reasons - one being the amount of radiation he received, the other being his alpha one antitrypsin deficiency. So he will have his PFTs tomorrow and then actually see the pulmonologist next month when he goes for the remained of her his appointments - dental, dermatology, and the recheck at ophthalmology. This time of year is always busy for him as they check everything out and make sure he has not developed any additional late effects of treatment.
It is hard to believe that he is 12 years old already. It doesn't seem possible. We are so grateful and so blessed. He will be starting 7th grade this year. I can hardly believe that either! He has had a great summer. Lots of down time, lots of play time with his sisters, time in the pool and a trip to St. Louis to visit friends/family. We had a great time. We have really enjoyed our family time! But there is one thing he always does alone... He went to Camp Hope once again this summer. It is one of his favorite things and he looks forward to it all year long. He also holds information about camp at ransom all year long :) So we hear tidbits about things he did throughout the whole year instead of him blurting it all out at once when we pick him up. He continues to be the quiet type most of the time. I think he gets that from his father. One of the children he knew from camp passed away recently - I think that was the first time we shared a loss of a fellow warrior with him. We have kept him in the dark a lot because we don't want to worry him. He lost a fellow transplant warrior friend while he was in transplant and we did not tell him that. I couldn't bear it. He had enough to worry about. To this day I still haven't told him. He is an anxious kid and often times when he hears things like that they tumble around in his brain too much. He was down for the entire day when he learned about the passing of his camp buddy. This time I thought he was old enough to know though... still not sure if I made the right decision. He knows the dangers of all he and his camp friends have endured but I think he buries that most of the time and pretends it isn't a real problem. It is heartbreaking for children to lose friends to cancer, for families to lose children to this beast. There have been so many stories lately of children lost - it's heartbreaking and overwhelming... Survivors guilt is also a real thing. I don't post on our support group pages very often because so many are sharing stories of heartbreak that it doesn't seem right to share how things are going now. I also always worry if I'm going to jinx it. I think that is part of the reason I am so worried about tomorrow. He is more than 5 years post transplant now. This is supposed to be a thrilling time but part of my doesn't want to tempt fate. Part of me will always worry I suppose. No amount of therapy can help with that. When you come so close to losing your child - even once, let alone multiple times - that worry stays there, it hides most of the time but rears its ugly head when tests are coming up. You can look at your child and think - he's been fine, he looks good, energy is good, appetite is good - so he's fine - but then that ugly beast speaks up and you hear "but what if something is going on that you CAN'T see! What if the test show that there is something bad lurking below" It's hard to make people understand that. If you haven't ever been there it is pretty impossible to understand it. Ok well enough of that - I'm stressing myself out more now.
Sooo... Donavynn is not looking forward to returning to school - because he missed so much time for treatment school is harder for him and he never really got into the groove of it early on like most kids do. He hates that he has homework every night usually because it takes him a long time to complete even the simple assignments because by the end of the day his brain is just simply exhausted. So I don't blame him. We are going to try to find other ways to help him with all of that this year, though we aren't really sure how we can do things differently than we have been. We are open to any tips. :)
I think that is all for now. This ended up being far more rambling that I intended so if you stuck with me this long - thanks. :) And as always thanks for the continued prayers for healing and health for our special boy!!!
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