Saturday, September 17, 2016
September Update
Hello, everyone. Yesterday Donavynn had a few other appointments to assess how he is doing. I posted a brief update on his facebook page but thought I would give a more detailed update here as it has been awhile.
His first appointment was with dermatology. He has always had eczema but now with the onset of puberty he has new issues. Thankfully, they are all mild and easily managed. His birthmarks all look good and have not changed. After that, he had a follow-up appointment with ophthalmology because six weeks ago he had some issues with dry eye that they wanted to be treated pretty aggressively. He was getting artificial tears four times a day and a moisturizing ointment every night. He despised all of it but as usual, he did what he was told. Thankfully, this has resolved so he no longer needs the ointment at night and can cut the drops down to 1-2 times per day. Next was off to dental after a nice stop for lunch at Quiznos. With me working so much now and Donavynn thankfully doing well overall we don't have the time together that we used to - so our little lunch date was nice. All looked good with dental - no cavities, but many loose teeth. He also may need some teeth pulled later, but they want to watch for right now. They also told us that since he's five years out and is doing well that he can start seeing a regular dentist anytime. I suppose this is a good thing, but I can't help but feel uncomfortable with it. He has blunted roots from treatment, so I am leery of him seeing someone who isn't used to caring for these types of patients. His final appointment was with pulmonary. Since his diagnosis with the alpha one antitrypsin deficiency, his transplant doctor wanted him to be monitored more closely by pulmonology since he has had so many issues over the years with his lungs, full body radiation increases the risks to the lungs and as pts with alpha one get older they are more susceptible to lung problems. The appointment started spirometry to see how things are going. They reported that his function is down slightly. Over 80% is normal 60-79 is considered mildly impaired and his was at 72%, luckily his CO2 exchange is still in the normal range. The doctor reported that this can happen after transplant but it is possible to improve it and get him back to normal but there hope is to at least keep him stable. Treatment for this includes adding an inhaled steroid twice daily after his acapella treatment, increasing his acapella to twice daily with his albuterol, and since he seems to have chronic allergies they added Flonase to his medication regimen. This will take some getting used to. For awhile he was on very few meds and needed very little assistance with things but now he has a few more to do, and a different routine to adjust to. He has also gained 6 lbs in the last month which is concerning. He does have hypothyroidism, but he also doesn't have the healthiest eating habits either. For years, we were told that if he was eating, they were happy so to let him eat what he wanted. Now that isn't the best plan because he is already at an increased risk for diabetes and heart disease. Trying to modify his diet now without giving him a complex has been somewhat challenging. We are trying to find healthier options that he will also enjoy, and work on portion control and increase his physical activity. He hasn't been happy with these changes, but he understands the need. So overall, things are going fairly well with him.
Over the last week, however, we have been under added stress, and initially I wasn't going to share this information, and I am still hesitant to do so because I do not like to ask for help... but our options have become very limited so we are reaching out to anyone who can and wants to help. Our roof needs to be replaced. The years of Donavynn's medical needs have left us... well not in the best financial shape. Of course, it was all worth it and we would do it all again. But when your child is in therapy things get pushed aside becasue nothing else matters, and there is no time or funds for routine maintenance. Sadly, the roof was one of those things and we recently learned that our home owners insurance won't cover the roof until it is replaced... some fine print I must have missed when we changed providers. We weren't too worried, figured I'd pick up extra shifts and get it taken care of early next year. This last week or so we have found 2 leaks from the roof with all the rain we have been getting... one in the dining room, and one in Donavynn's room. The roofers who have been here have informed us that we may see more soon due to the poor shape of the roof. Of course with Donavynns multiple risk factors this is extremely concerning and I have been an emotional wreck all week. We have gotten a few quotes and are waiting on more but the cost is far more than we ever expected and, we are very worried. We do not have enough equity to take out a home equity or home improvement loan, and simply could not afford a personal loan that would need to be paid off over a couple of years so we thought that it can't hurt to reach out to our friends and family for help. Our gofundme page link is below. If you can help it would be greatly appreciated - no amount is too small - every penny helps. If you can't give for whatever reason - prayers are always appreciated. Prayers that we can find another means to fix this if we are unable to raise the funds. It has been a long day, a long week - I'm exhausted so I am going to close here. Thank you for reading, thank you for always keeping our family in your prayers! God bless!
Help our family get a new roof - click here
Tuesday, August 16, 2016
Test Result Updates and more...
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!!!
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!!!
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!!!
Tuesday, July 5, 2016
Hello, Team Donavynn. We have had a busy summer so far. Donavynn went to Camp Hope - which is an amazing camp for children who are currently fighting or have fought cancer. They are staffed with doctors and nurses to ensure that each child has the medical attention that is needed. He has done this now for about 5 or 6 years; he missed camp the year of his transplant which broke his heart but his doctor Dr. Shore brought him a care package from camp to show him that he wasn't forgotten. While he was at camp, the girls took a trip to St. Louis with their godparents and had the time of their lives going to the zoo, The Magic House, swimming, Six Flags, etc. Since we have been home, we have tried to keep things pretty mellow. I've been working a lot so we can take the whole family for a last hurrah of the summer in St. Louis and the kids have been enjoying their wading pool, helping out with yard work, reading, and playing with each other - the games they come up with are always entertaining. Donavynn has really enjoyed the one on one time with daddy - after the girls go to bed, they stay up and play Xbox. This is obviously something that they can't do much during the school year since they all have to get up so early. That being said, the kids are enjoying the summer and are in no rush to return to school, but as always the days are slipping by quickly, and they will be back to school before we know it.
Donavynn struggled with ear infections throughout the school year; we thought that he would be fine over the summer and with his history of tubes falling out quickly we opted to wait to have them replaced until August... that appears to have been a mistake as he has been plagued with ear infections all summer as well. This is more than just a little upsetting, but hopefully, the surgery will eliminate that problem next month, and he can have a good school year. Last year he missed a great deal of school for many different illnesses - bronchitis, influenza A, ear infections, etc. We are hoping for a better year this time around, but we understand that his immune system will never be what it could have been.
Now on to the more exciting information - July 8th - just three days away - is Donavynn's five year transplant anniversary. It is an amazing day, an amazing accomplishment. My heart is so happy and filled with hope and joy. We are feeling so blessed. The 5-year mark is an amazing accomplishment - one where many would use the "c" word. I am too afraid to use that word; that fear will probably never go away. Any neurological complaint will always worry me since that is where his relapses were - a headache, dizziness, etc. But we look forward to this day and plan to have a small celebration. He is our miracle boy, he always has been... we lost 3 pregnancies before we were finally blessed with him - our healthy miracle baby, and then he defied odds over and over again to grow to be where he is now - despite cancer, despite the battle in the PICU that was scarier than any cancer battle he had endured, despite the severe liver GVHD... we are so grateful. I can't even put it into words. During all of my prayers I begged the Lord for healing, I told him that we would share Donavynn's story with all who would listen. We would tell them all about the miracle he was given. That God is here that he does still give miracles. Back when he received the transplant we had big hopes for this anniversary date. We wanted to throw a big party to celebrate. But things didn't work out that way, and I am honestly happy that it didn't. To me, that would feel like tempting fate. So I think we will just get a small cake and celebrate as a family - maybe with his favorite meal.
I would like to say that while we are elated at this gift he has been given, we also want to remind you - the public - that this isn't free. His cancer and subsequent treatment has forever altered his life. We will always struggle with some of what he has lost, but do find comfort in the fact that it could always be worse. I do not bring this up to sound ungrateful - I only wish to educate people. Childhood cancer is a thief, a murderer. At the least it takes weeks, and months away from a child, it can take the ability to have children, takes brain cells and thus the ability to function as a normal child, it damages other organs such as the liver, the thyroid, and the heart, and at the very worst it takes lives far too soon. Just in the last week, I have seen at least three children on my facebook feed who were taken too soon by this beast. Families forever fractured, parents and siblings grieving - pain that we all as parents fighting this beast fear. So please remember that while we celebrate - we still have a battle to fight. Children are still being diagnosed every day, they are losing precious time with their families as they fight in the hospital, they are losing time with friends, time to be children... When Donavynn was in the PICU, we were reminded of how much time Donavynn had spent in the hospital during one of the many "talks about his prognosis". The doctor said there was no shame in unhooking him and loving him until he passed. He told us to consider his quality of life and asked: "how much time has he been able to spend at home during all of this?" When we sat down and thought about it, we felt incredibly selfish. His quality of life, by most standards, was awful. But we also knew that though he was in the hospital, we did everything to make that time enjoyable. We had many laughs during the pain; we had lots of fun despite the needles and treatments and we just weren't ready to give up. So perhaps we were selfish. Perhaps we did fight too hard. But we will not apologize for that because we are blessed with this amazing 12-year-old boy! If you would like to honor Donavynn and his battle, do something to celebrate his five-year anniversary then PLEASE make a donation to your local children's hospital or make a donation to Children's Mercy Hospital Cancer center - they do their own research there just like St. Jude's.
Donavynn struggled with ear infections throughout the school year; we thought that he would be fine over the summer and with his history of tubes falling out quickly we opted to wait to have them replaced until August... that appears to have been a mistake as he has been plagued with ear infections all summer as well. This is more than just a little upsetting, but hopefully, the surgery will eliminate that problem next month, and he can have a good school year. Last year he missed a great deal of school for many different illnesses - bronchitis, influenza A, ear infections, etc. We are hoping for a better year this time around, but we understand that his immune system will never be what it could have been.
Now on to the more exciting information - July 8th - just three days away - is Donavynn's five year transplant anniversary. It is an amazing day, an amazing accomplishment. My heart is so happy and filled with hope and joy. We are feeling so blessed. The 5-year mark is an amazing accomplishment - one where many would use the "c" word. I am too afraid to use that word; that fear will probably never go away. Any neurological complaint will always worry me since that is where his relapses were - a headache, dizziness, etc. But we look forward to this day and plan to have a small celebration. He is our miracle boy, he always has been... we lost 3 pregnancies before we were finally blessed with him - our healthy miracle baby, and then he defied odds over and over again to grow to be where he is now - despite cancer, despite the battle in the PICU that was scarier than any cancer battle he had endured, despite the severe liver GVHD... we are so grateful. I can't even put it into words. During all of my prayers I begged the Lord for healing, I told him that we would share Donavynn's story with all who would listen. We would tell them all about the miracle he was given. That God is here that he does still give miracles. Back when he received the transplant we had big hopes for this anniversary date. We wanted to throw a big party to celebrate. But things didn't work out that way, and I am honestly happy that it didn't. To me, that would feel like tempting fate. So I think we will just get a small cake and celebrate as a family - maybe with his favorite meal.
I would like to say that while we are elated at this gift he has been given, we also want to remind you - the public - that this isn't free. His cancer and subsequent treatment has forever altered his life. We will always struggle with some of what he has lost, but do find comfort in the fact that it could always be worse. I do not bring this up to sound ungrateful - I only wish to educate people. Childhood cancer is a thief, a murderer. At the least it takes weeks, and months away from a child, it can take the ability to have children, takes brain cells and thus the ability to function as a normal child, it damages other organs such as the liver, the thyroid, and the heart, and at the very worst it takes lives far too soon. Just in the last week, I have seen at least three children on my facebook feed who were taken too soon by this beast. Families forever fractured, parents and siblings grieving - pain that we all as parents fighting this beast fear. So please remember that while we celebrate - we still have a battle to fight. Children are still being diagnosed every day, they are losing precious time with their families as they fight in the hospital, they are losing time with friends, time to be children... When Donavynn was in the PICU, we were reminded of how much time Donavynn had spent in the hospital during one of the many "talks about his prognosis". The doctor said there was no shame in unhooking him and loving him until he passed. He told us to consider his quality of life and asked: "how much time has he been able to spend at home during all of this?" When we sat down and thought about it, we felt incredibly selfish. His quality of life, by most standards, was awful. But we also knew that though he was in the hospital, we did everything to make that time enjoyable. We had many laughs during the pain; we had lots of fun despite the needles and treatments and we just weren't ready to give up. So perhaps we were selfish. Perhaps we did fight too hard. But we will not apologize for that because we are blessed with this amazing 12-year-old boy! If you would like to honor Donavynn and his battle, do something to celebrate his five-year anniversary then PLEASE make a donation to your local children's hospital or make a donation to Children's Mercy Hospital Cancer center - they do their own research there just like St. Jude's.
Tuesday, June 7, 2016
It's Been Far Too Long!
Hello Team Donavynn! My hope is that you have all been keeping up to date with Donavynn on his facebook page - if not you have missed a LOT. But I will do what I can to catch you up. This page will probably move from being entirely Donavynn centered to more of an overall family update but mostly Donavynn and Charly.
Back in 2011 we started on an entirely new journey that didn't really allow much time for me to post here and that was why I went to strictly posting on his facebook page. I hope that will be different now.
I don't want to go over the last 5 in this post - so if you haven't been following along and want more info check out his page - the address is listed below but I will do a quick recap...
Since my last post Donavynn had his bone marrow transplant - he will be 5 years post transplant next month and he is doing well. 4 months after transplant we nearly lost him to a terrible infection that left him on life support for 5 weeks - with the doctors holding out little hope and me being pushed to discuss his "code status" on more than one occasion by one physician I hope to never see again. Apparently this type of infection this close after transplant, in addition to GVHD offered a very slim chance of survival - but by the grace of God thanks to his healing hands and our team praying for him nightly he made a miraculous recovery. We actually stopped by the clinic to see some of this providers today while we were up there for other things since he is now on yearly visit. It was nice to see everyone and not be there for any reason other than to visit them. Ok so now that he is considered a cancer survivor he has developed some late effects of treatment - hypothyroidism and growth hormone deficiency. He is monitored for all of that every 6 months and is on growth hormone and it has been working great. Today they increased his dosage and are pleased thus far with his progress. In 2013 we had our last child - a beautiful little girl named Charlytte. Due to a weird fluke (she had trigger finger so the doctors did a lot of lab work to rule out various causes such as arthritis and diabetes - during that lab work they found something abnormal) her liver enzymes were elevated requiring a further evaluation. We quickly learned that our princess has alpha one antitrypsin deficiency. Because this is genetic our other children were checked for it and not at all surprising Donavynn was found to have it as well. This was sad for us but also explained why his liver was so sensitive to treatment and why it reacted so harshly to many things. So this disorder can cause a wide array of issues in the worst case scenario but thankfully is often very mild and thus far is just that for our children. It can cause liver failure in children and lung problems including COPD in adulthood so we are encouraged to avoid anything that can increase their risks such as being around second hand smoke, camp fires etc. So today they had their appointments for this to see how things have been since the official diagnosis... my mind is racing trying to get down everything I want to say without being too long winded - as I have a tendency to write a novel when I mean to write a short story.
Donavynn
Appt 1 - ultrasound of the abdomen - everything is NORMAL
Labs - those that were back were normal! Still waiting on thyroid levels, growth factor 1, hgb A1C, and vitamin levels. - these two things mean they are decreasing his ursidiol (the medicine he's been on for his GVHD that they've kept him on since it seems to keep the liver enzymes down) to once/day.
Endocrine - good growth, increasing growth hormone slightly. No concerns from the endocrinologist.
Liver Care Team - gave a clean bill of health based on their assessment and the information listed above. They did do a complete history of the winter as they like to keep track of any respiratory illnesses due to their risk for damage to the lungs later on.
Charly
Labs - improved from initial diagnosis, very close to normal range - no ultrasound since hers was done a few months ago.
Liver Care Team - gave a clean bill of health based on their assessment and the lab values.
Both of them had a rough winter with multiple ear infections, Donavynn had bronchitis, and Flu A and Charly ended up with pneumonia - shockingly enough with the only symptom of a fever for a few hours - due to her hx and the late hour - I took her to the ER expecting an ear infection since she had zero symptoms prior to the fever - no cough, no runny nose or congestion etc. Thankfully it wasn't that serious and she was able to be treated at home with some antibiotics. This is likely the winters we can expect with the two of them so I'm glad summer is here.
Overall it has been a good few years here. I hate to speak too loudly. Donavynn is heading into 7th grade in the fall. It's hard to believe that it's been more than 10 years since we received that horrible diagnosis. It seems like a bad dream, like it was someone else's life. We are eternally grateful for our children's health and for all of those who keep them in their prayers. I know that if it wasn't for the prayers that he received and the grace of God that he would not be with us today. So thank you all and please keep praying. Remission does not equal a cure and the worry will never completely go away. Though many do consider the 5 year mark to be cured - we still must stay on top of things. His treatment increased his risk for a variety of health problems in edition to secondary cancers - so we continue to pray and be grateful for every healthy day. Do what you can to educate people - understand that childhood cancer is a family diagnosis, it is a lifetime war even after the battles may have been won as you monitor yearly for late effects and pray for clean scans and normal bone marrow. Our children need better treatments - less toxic, more effective treatment.
If you have any questions please feel free to ask. We are always open to helping educate people. Thank you again for your love, support, and prayers. Our family would not still be whole without them!!!
Much love from our home to yours!!! ~Team Donavynn~
Back in 2011 we started on an entirely new journey that didn't really allow much time for me to post here and that was why I went to strictly posting on his facebook page. I hope that will be different now.
I don't want to go over the last 5 in this post - so if you haven't been following along and want more info check out his page - the address is listed below but I will do a quick recap...
Since my last post Donavynn had his bone marrow transplant - he will be 5 years post transplant next month and he is doing well. 4 months after transplant we nearly lost him to a terrible infection that left him on life support for 5 weeks - with the doctors holding out little hope and me being pushed to discuss his "code status" on more than one occasion by one physician I hope to never see again. Apparently this type of infection this close after transplant, in addition to GVHD offered a very slim chance of survival - but by the grace of God thanks to his healing hands and our team praying for him nightly he made a miraculous recovery. We actually stopped by the clinic to see some of this providers today while we were up there for other things since he is now on yearly visit. It was nice to see everyone and not be there for any reason other than to visit them. Ok so now that he is considered a cancer survivor he has developed some late effects of treatment - hypothyroidism and growth hormone deficiency. He is monitored for all of that every 6 months and is on growth hormone and it has been working great. Today they increased his dosage and are pleased thus far with his progress. In 2013 we had our last child - a beautiful little girl named Charlytte. Due to a weird fluke (she had trigger finger so the doctors did a lot of lab work to rule out various causes such as arthritis and diabetes - during that lab work they found something abnormal) her liver enzymes were elevated requiring a further evaluation. We quickly learned that our princess has alpha one antitrypsin deficiency. Because this is genetic our other children were checked for it and not at all surprising Donavynn was found to have it as well. This was sad for us but also explained why his liver was so sensitive to treatment and why it reacted so harshly to many things. So this disorder can cause a wide array of issues in the worst case scenario but thankfully is often very mild and thus far is just that for our children. It can cause liver failure in children and lung problems including COPD in adulthood so we are encouraged to avoid anything that can increase their risks such as being around second hand smoke, camp fires etc. So today they had their appointments for this to see how things have been since the official diagnosis... my mind is racing trying to get down everything I want to say without being too long winded - as I have a tendency to write a novel when I mean to write a short story.
Donavynn
Appt 1 - ultrasound of the abdomen - everything is NORMAL
Labs - those that were back were normal! Still waiting on thyroid levels, growth factor 1, hgb A1C, and vitamin levels. - these two things mean they are decreasing his ursidiol (the medicine he's been on for his GVHD that they've kept him on since it seems to keep the liver enzymes down) to once/day.
Endocrine - good growth, increasing growth hormone slightly. No concerns from the endocrinologist.
Liver Care Team - gave a clean bill of health based on their assessment and the information listed above. They did do a complete history of the winter as they like to keep track of any respiratory illnesses due to their risk for damage to the lungs later on.
Charly
Labs - improved from initial diagnosis, very close to normal range - no ultrasound since hers was done a few months ago.
Liver Care Team - gave a clean bill of health based on their assessment and the lab values.
Both of them had a rough winter with multiple ear infections, Donavynn had bronchitis, and Flu A and Charly ended up with pneumonia - shockingly enough with the only symptom of a fever for a few hours - due to her hx and the late hour - I took her to the ER expecting an ear infection since she had zero symptoms prior to the fever - no cough, no runny nose or congestion etc. Thankfully it wasn't that serious and she was able to be treated at home with some antibiotics. This is likely the winters we can expect with the two of them so I'm glad summer is here.
Overall it has been a good few years here. I hate to speak too loudly. Donavynn is heading into 7th grade in the fall. It's hard to believe that it's been more than 10 years since we received that horrible diagnosis. It seems like a bad dream, like it was someone else's life. We are eternally grateful for our children's health and for all of those who keep them in their prayers. I know that if it wasn't for the prayers that he received and the grace of God that he would not be with us today. So thank you all and please keep praying. Remission does not equal a cure and the worry will never completely go away. Though many do consider the 5 year mark to be cured - we still must stay on top of things. His treatment increased his risk for a variety of health problems in edition to secondary cancers - so we continue to pray and be grateful for every healthy day. Do what you can to educate people - understand that childhood cancer is a family diagnosis, it is a lifetime war even after the battles may have been won as you monitor yearly for late effects and pray for clean scans and normal bone marrow. Our children need better treatments - less toxic, more effective treatment.
If you have any questions please feel free to ask. We are always open to helping educate people. Thank you again for your love, support, and prayers. Our family would not still be whole without them!!!
Much love from our home to yours!!! ~Team Donavynn~
Tuesday, May 3, 2011
Donavynn has relapsed...
http://www.facebook.com/pages/Team-Donavynn/86273264326
It has been easier to post on his facebook page lately so I don't know how often I will be able to post here but this is the link to that page if you would like to follow his story closer. All updates from 4/11 are posted on his FB page.
It has been easier to post on his facebook page lately so I don't know how often I will be able to post here but this is the link to that page if you would like to follow his story closer. All updates from 4/11 are posted on his FB page.
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