The Natalie & Alice Fish Story

We are the Fishes. In 2011 two of our five children; Natalie and Alice were diagnosed with a rare gene disfunction called Leaky SCID (Severe Combined Immune Deficiency). Their condition is so rare that only two cases are reported in the U.S. each year. Both girls have endured much, and have spent most of their young lives in and out of hospitals due to common illnesess a healthy immune system would overcome. The required treatment for our girls is a bone marrow transplant.
Although the new marrow could mean a normal life for them, it will be a long and arduous road. This blog is to share our experience as parents and the courage of our children.

Sunday, October 18, 2015

Summer 2015 (part #1)--Alice's Second Donor--Happy 2nd BMT Birthday Alice!

Summer 2015 is coming in three parts. #1 Alice's second donor (this post), #2 Summer overview (next post) and #3 Our summer long yard project (last post),

I was sitting in church today when a friend text me to wish Alice a happy BMT birthday. Suddenly I looked at the calendar and sure enough it is October 18th.  Wow, how did that slip past us?  I remember when Tyler and I would count each passing day post transplant--some days felt like weeks, and now we are moving along with life and forgetting the very moment that consumed our every thought and motion.  When I told Alice today, she said..."We better make a cake." :)

AND......what a perfect day to Introduce Alice's second HERO.  ALLAN MASSIE from Maryland.

Today marks two years post Alice's second transplant.  We have been exchanging conversation with Allan for sometime, it has been wonderful to learn of this person who gave her another chance at life.  Allan is awesome and wrote a little write up of his side of the story...it will always be a great piece of history for us.

Also I was able to get Alice's first donor's side of the story this summer.  I look forward to posting that on her 1st BMT birthday this coming January 17th.

Words can not describe how thankful we are for Allan and Michelle as Alice's donors.  Every time I think of them I want to reach across the country and give them warm hugs and sit in their presence.  Maybe someday we will meet them in person.



The following was Allan's first contact with us....

Hi,

Maybe you have received my contact information already. I donated bone marrow in October 2013, that apparently went to your daughter. I got your contact info this morning, and my wife and I immediately found your blog. We've been looking at the updates. I'm glad your little girl seems to be doing well.

Maybe you'd like to know a little bit about me. I live in in Baltimore, Maryland with my wife and our two kids. Here's a picture from our vacation last summer:

I am an epidemiologist and I do research on kidney and liver transplantation, although I joined the bone marrow donor program before I started working in the field of transplantation (or before your daughter was even born... imagine). Since I've done research on live kidney donors, it was interesting to me to get a little firsthand experience in the world of donation, even though donating marrow is nothing compared to donating a kidney.

If you like, I'd be happy to write a note for your blog on my experience as a donor, which was quite positive.

Allan Massie with his beautiful wife and children



The following is the narrative that Allan wrote telling his side of the story...
very good and very interesting...
especially motivating...

I joined the marrow donor registry around eight years ago (before Alice was even born, I think). They had set up a table at my graduate school. I don't really remember signing up, but I'm sure it didn't take more than a few minutes. It seemed like a good thing to do, but small, like signing a petition or wearing pink for breast cancer.  The only thing that made it seem significant, to me, is that they asked for as many kinds of contact info as possible, in case they had to reach you in ten or twenty years. They gave a card for my wallet, which occasionally reminded me that I had signed up for this thing. Other than that, I never thought about it.
Maybe four years after that, December 2011, I got a phone call. I might be a match for a patient, a young girl. They were contacting multiple donor candidates to try to find a donor. Now it seemed more real – someone was sick. I went to a clinic where they took some blood for tests. I had a few rounds of phone calls with a coordinator, but these petered out. I figured they'd chosen a different donor.
(Now, looking at Alice's parents' blog, I know that was the case. It looks like she received her first marrow donation in January 2012. Her first donor was a pediatrics resident; I work in biomedical research. Coincidence? Maybe people who do health-related work are more willing to sign up, or maybe they're easiest for the registry to reach.)
I got another call in June 2013. I was now determined to be the best candidate donor, for the same patient as before. I was asked to come in for additional bloodwork and a physical exam. The surgery would probably be some time in August; no, October. A date was set.
Over the course of this process, there was no do-or-die decision moment. The coordinator never put any kind of pressure on me, and I knew that I could walk away at any time. The pre-donation workup gave me plenty of time to consider the decision; by the time I was formally asked, my mind was long made up. Anyway, it wasn't a hard decision. I didn't much worry about the risk. The surgery carries a miniscule risk of death or paralysis, but the same can be said of my daily commute. I wasn't worried about being in pain for a few days or even for a few weeks; I figured that I could just get through it, like a bad cold. I was concerned about the possibility of mild long-term disability: what if I had recurrent pain or walked with a limp afterward? But that didn't seem likely. My expenses would be paid for. I had excellent support at work. (I work in the field of solid organ transplantation, so my office pretty much *had* to support my donation.) In short, aside from some temporary pain, I didn't see any downside, and the potential upside – to save someone's life – seemed huge. So it was easy to commit to donating.
(Reading Tyler and Lisy's blog from mid-October 2013 fills me with wonder. I had no connection to this family, apart from excellent HLA match with one of their children. At the time, I didn't know their names or where they lived. And yet our trajectories, thousands of miles apart, locked into synchrony. Two operations, two hospital stays, and a bag of cells traveling across the country.)
Early on the morning of October 16, 2013, I went to Georgetown University for the operation. I signed a few consent forms. A relative trained in hypnotherapy had volunteered to perform a hypnotic induction to reduce anxiety and pain, so we did that. He is convinced that it worked; my intuition tells me that it made no difference, but really there's no way to know for sure. In any event, it did no harm. The anesthesiologist started the anesthetic, and as they wheeled me down the hall, asked me to count backwards from ten, and… scene.
I woke up feeling pain, but mostly intense weakness. I had thought (perhaps right up until the operation) that removing marrow was like scooping ice cream. In fact, they pull out marrow-enriched blood from the bone. So they had taken 1300 mL of fluid from me, causing dehydration. They started infusing me with autologous (self-donated) blood immediately, but that took time – around an hour, I think. During that time, my nausea ebbed away and my strength came back. After two hours or so, I was still pretty weak, but I ate a pastry, then a bunch of saag paneer, then more pastries – I was ravenous. My hip felt like a really sore muscle (a strange feeling, for a bone). After around 4 hours, I could stand for brief moments. I spent the rest of the day sore and tired, but feeling better over time. I did a bit of work that evening, from my hospital bed.
The next morning, I was discharged. By then I was capable of walking short distances, although after my wife drove me home I pretty much stayed in bed. 
(This was the day of Alice's transplant. There are pictures of the family, posing with my bag o' marrow.)
The rest of recovery was uneventful. I lay pretty low for a week or so. I have a desk job so I was able to work from home. I think I was back at work on Monday, four days after hospital discharge. I don't remember exactly, but I would guess that the soreness was a minor concern after about a week and unnoticeable after about three weeks. Then I went on with my life. Other than a few followup phone calls from the coordinator, I didn't really think about it.
One year after the donation, I heard from the coordinator that my recipient was alive and doing well. I was pleased, of course. To be honest – I hope the Fish family doesn't mind reading this – I would have been disappointed, but not devastated, if the outcome hadn't been good. I donated in order to give someone a chance at a good outcome. I knew from the outset that it might fail; I had decided that the donation was "worth it" no matter how it turned out.
A few days ago, I submitted a form to my coordinator with contact info, to be passed to the recipient. The next morning, I got the corresponding form from the family in my email inbox. My wife Googled "Alice Fish" and we immediately found the blog telling the story of Alice and her sister. I've read portions of the blog, out of order. Now that "my recipient" isn't anonymous to me, I feel more invested, and more pleased that she seems to be doing well.
A number of people have described my donation as "heroic". I don't see it that way. I didn't rush into a burning building, or jump into a flooded river. The risk to me was very low. The recovery period wasn't exactly pleasant, but it was no worse in scale than, say, a bout of the flu. The astonishing thing about the donation to me is that something so comparatively minor for me can have such a major effect for someone else. I am proud that several friends and relatives have registered for the bone marrow registry after hearing about my donation.
I wish all the best for Alice. I don't know very much about SCID. From the blog, it seems that even if the graft continues to succeed she will continue to have some challenges. I don't know whether the graft might fail in ten years, or twenty. But I am happy if my donation has improved her quality of life. Alice, and all of us, are fortunate for every good day that we get.

3 comments:

  1. SO inspiring! Thank you for sharing! What an amazing man and what a miracle that he could be one of the tender mercies in Alice's life!! I love you all!!!

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