Sunday, September 7, 2014

DAY +100!!!

I recently heard “Day +100” for a transplant patient described as being similar to reaching base camp on your way up Mount Everest.  We have reached a significant milestone, but still have a very long way to go.  We were reminded of this reality last week when Ryan’s counts dipped a little bit.  In fact, his neutrophil count has been hovering just over 1,000 and the team said that if it drops anymore, they will give him a drug called Neupogen to increase white cell production (also called Filgrastim or growth stimulating factors or G-CFS).

Ryan had Neupogen shortly after he was diagnosed last year with Very Severe Aplastic Anemia.  I would like to avoid this particular drug, because it adds a very slight increase in the chance of developing Leukemia.  It also only seems to work as a temporary solution for most people.  The counts go up while you are on it, but generally drop when you discontinue the drug. Ryan’s hematocrit had also dropped from an all time high of 35 down to 30 and his platelets dipped a bit.

However, after this scare, Thursday’s labs showed that his neutrophil count stayed about the same and his hematocrit had gone back up a bit to 33.  There is a possibility that the weekly antibiotic Ryan is on to prevent lung infections, Bactrim, may be causing his counts to stay a little low.  Bactrim is known to affect bone marrow function, but they still use it because it is more effective than alternatives, such as Pentamadine, in preventing a specific type of lung infection that is very dangerous to transplant patients.  If Ryan’s counts dip again, they may take him off of Bactrim and put him on another drug they have in mind.

Also a little disappointing is that our stay in Seattle is extended at least a week.  This is not due to medical reasons, but has more to do with scheduling with a specific doctor that will be following Ryan post-transplant.  Ryan was transplanted under a Research protocol led by Dr. Burroughs, and she would like to see him in clinic this coming week and be the one to hold his Data Review Conference and discharge him. As much as we would like to be home, I do look forward to speaking with Dr. Burroughs again and getting her take on how Ryan is doing and his overall prognosis.

We haven’t let some slightly lower counts and a delay in going home get in the way of our excitement in celebrating this huge milestone today!  I asked Ryan how he wanted to celebrate and he had one simple request. Chocolate cake!  We celebrated at Grandma Terry’s house (a little beyond how far we are officially supposed to travel, but hey, it’s day +100!!!).  Brad and I also surprised Ryan with a new kick scooter.  We figured he deserved a reward for everything he has gone through.  We also have an ulterior motive –it counts as physical therapy!

As we reflect on the past 100 days, and the past 14 months since Ryan’s diagnosis, we are incredibly grateful for all of the support we have received.  There truly is no way we could have come this far so successfully without the numerous individuals that have so kindly helped us along the way.

In the early days of Ryan’s diagnosis, I really learned what a kind-hearted and generous group of people I work with.  My co-workers near and far immediately started offering to help.  They sent cards and notes with supporting words, collected gifts for Ryan and money to help with medical bills. We even had dinners prepared for two months by co-workers all throughout my office and delivered to our front door.

My boss, my team, and those I work closely on projects with have been so patient and flexible when I have needed to work crazy schedules to fit doctor’s appointments and hospital admissions in.  I have been so overwhelmed and thankful for this support.  I know of other families affected by this illness that have lost their jobs, and I am so grateful that I haven’t had to face that type of stress and financial burden on top of an already devastating situation.

We are also grateful to friends and family that have helped in so many different ways.  The grandmas have been especially helpful in offering to care for Ryan so that I can go back to work.  I am also thankful for those who visited us in the hospital, those who stayed a bit with Ryan so that I could have a break, and those that invited me out for a change of scenery.

I am grateful to the other Aplastic Anemia families that have connected with us and have offered so much support.  Although we are small in numbers due to the rareness of this disease, I am continually amazed out how strong and full of grace these families are.  These are families going through their own struggles, recoveries, and, heartbreakingly, some have lost their own children.  They have taken the time to send me personal messages, comment on Ryan’s page, or “like” his updates.  It has been wonderful to have this type of support.  I hope to be able to meet some of these families in the future as they have become near and dear to my heart.

Even the little things that let us know we are not going through this alone have been a really big help.  I read and appreciate every comment on Ryan’s Facebook page, and I see every “like” that comes through and am thankful you cared enough to take a few seconds out of your day to check in on us. If you are taking the time to read this right now, we are thankful for you!

Most of all, I give thanks to God.  I normally do not talk much about religion.  In fact, I haven’t even been to church in almost 10 years.  I also have a great amount of respect for different religions and even those who do not believe in God or religion. I can completely understand why there are so many different views on this topic, so I tend to keep my posts fairly neutral in this regard. However, I have witnessed too many miracles recently, both in Ryan and other children fighting battles, to question where they are coming from.  I am going to go with my gut on this one and give thanks where I think it is deserved.

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