Riding with hope

Those who know me well will know that I am not a roller coaster kind of girl. I much prefer the merry go round. It's a gentler ride and on horses which is bonus. The merry go round is much more predictable, with some ups and downs, and always moving in a forward direction. Yet, life is not always like the merry go round. More often, it seems, it is like a roller coaster, with some exhilarating ups and terrifying downs and always a bit unpredictable.

The past few weeks have been very much like a roller coaster. There has been the exhilaration of finding a living donor, and then the stall at the top of the hill with no progress towards a potential surgery date. And the quick crash down of having my fears confirmed that Hope is becoming sicker.

We had our 3 month recertification for the UNOS liver waiting list last Wednesday. Children must be re-certified every three months to determine their status on the list. Our doctor does labs every month, so I had an updated score last month. The score is a called a PELD score number, with PELD standing for Pediatric End Stage Liver Disease. The higher the number, the sicker the child, and the more urgent the need for an organ transplant. Hope was listed with a "moderate" score of 18 back in July. It was the same number in August. In September, she moved to 19. And now, she took a jump to 24. Her jump in score is because she is not able to clot her blood as well (a function of livers) and her kidneys are weaker (which happens in liver disease). Despite the fact that she looks SO much better on the outside and continues to flash that award winning smile, she is sicker. Our amazing liver doctor, recognizing that she is sicker, told me that she would be applying for "exception points" for my girl. Exception points are written for by a child's doctor, which allows the child a higher spot on the list. In Hope's case, she has been written for a PELD score of 40. Her doctor explained that because of Hope's huge abdominal size (we had to have 3 different doctors examine it and have another ultrasound done on Wednesday because it is THAT big), her negligible vitamin levels, her portal hypertension, and her poor growth may allow UNOS to agree to place her higher on the list. Sometime this week we will have an answer to know if the points have been accepted.

It was very clear at our appointment on Wednesday that our team prefers cadaveric organ donation. I asked our doctor why. Her answer was simple. That there is no risk to another patient. Surgery is surgery, and even minimal risk surgeries (which our donor's team has said hers would be) carry risk. Other than that, there is no difference in how Hope receives her liver.

I left the appointment exhausted. And deflated. In the past three weeks, we had pneumonia hit our home for two girls, and lice hit for two girls (eek!). Hope is only sleeping 30 minutes to an hour at a time most nights now. Long gone are our two hours of uninterrupted sleep chunks. One fellow liver mom told me that as liver disease progresses, the baby's body becomes desperate for nutrition so wakes up to feed in an attempt to get what it needs. But it can never get what it needs, because the liver is too sick to absorb nutrients. My poor sweet baby girl. The roller coaster has been spiraling down so fast and I wanted my family off. I wanted the merry go round. I wanted to sit on the horse and have just little ups and downs, not this terrifying fast ride. Then I realized, I am not alone on the crazy coaster. God has provided me an army of friends to ride along with me. People praying for us during the ride. People who have been delivering food and meals. A friend who always thinks to offer to pay for the extras at my daughters' school. Friends who are not afraid to come into a home with lice or pneumonia and just hang out with us. Family and friends willing to stay with a child with pneumonia so another could get to a long anticipated appointment. Friends who message, call, and text just to check in and see if anything is needed. Friends who show grace when I cannot return a phone call or am late sending a thank you. A friend willing to take the time to email a vice president and explore financial resources so my children do not have any interruption in their child care routine. A donor who is willing to say YES. A friend who continually puts out our story in order for needed financial support since we have no income or unemployment benefits. A friend who donates her time to take family photos, and another friend who opens her home for a spur of the moment dinner. Fellow liver mamas who tell me that they understand, one who shares data on the kids waiting and takes the time to explain it to me, and others who remind me to live for today. A spiritual director who reminds me that God has the best plan for my sweet baby which is unfolding as it should be, and that I need to be patient and trust that He knows best. My list could go on an on. All mercies. From Him who sits next to me on the crazy coaster.

I am not sure how much longer we will be on the roller coaster as we wait for transplant. I do know that I would not trade this ride, as scary as it is, as it is MY ride. I do not know what corner, hill, or slope we are heading to tomorrow or next week, but I do know there will be more mercies. And I plan to hang on Him for the ride.

Hope on the red eye

Right now, on the red eye from Washington state to Boston, is our samaritan donor. In the world of liver transplants, there are two ways Hope could receive her gift. One is through cadaver donation, where a deceased donor's liver would be given to Hope. Hope is currently on the UNOS waiting list for a cadaver donor. There are WAY too many people waiting for livers than there are livers available. Since becoming a part of the "liver world" I have witnessed baby after baby die waiting for his or her gift. It is heartbreaking. Hope has been on the cadaver list for three months now. The sicker the baby, the higher they are on the list. Of course being sicker also means a much more critical surgery and recovery. I have seen babies die during the recovery process too. From what we can tell, Hope is 3rd or 4th on the cadaver list in this New England region, and there has been no movement in the time she has been waiting.
The other way Hope could receive her gift is through living donation. This means a person chooses to donate a piece of his or her liver. Hope only requires part of a liver to survive, and every person's liver is comprised of two lobes. If a living donor was found, she would receive the smaller part of a liver and the donor would keep the remaining larger part. The donor's liver would grow back to original size. It is the only organ in the body which can regenerate itself. When I first came home, I was very anxious to see what blood type Hope has. It is the first method of determining whether someone could be a living donor. Unfortunately, I am type A and she is type O. I cannot be a living donor.
Back at the end of August, our regional newspaper published a front page article on Hope's miraculous story in the Sunday paper. It was then syndicated around the US and abroad. Friends shared the article on social media, and the outpouring of prayers and support was nothing short of astounding. Shortly after, dear friends of our family sent a message introducing me to a childhood friend of theirs. This person asked if she could be tested as a living donor for Hope. She said she felt a strong calling or prompting from God to do so. And she was serious. Despite never having met us, she wanted to pursue being a donor.
Our first hurdle was to ask the transplant team at Boston Children's Hospital if it would be possible to consider this person as a living donor. Unbeknownst to me, there is a black market for organs which still exists in this country. Donors can receive payment for donating organs. The team takes this very seriously, and decided they would meet as a team to discuss it. At the time I had no idea what they had to discuss (again, I was clueless about unethical practices), and said to our transplant coordinator that I could not see the difference if Hope received an unknown cadaver donor or an unknown (to us) or known living donor. Perhaps it was that statement that contributed to the teams' agreement to allow us to pursue living donation. They gave us the go ahead to begin testing. Our donor quickly began completing questionnaires and bloodwork. All of the donor doctors and Hope's doctors are completely separate. This way, there is no conflict of interest. The donor is seen at a completely different hospital, and if donation surgery happens, Hope's surgeons will travel to this hospital on the day of transplant with cooler in hand to bring the liver back to Hope at Boston Children's Hospital. All of the donor's tests have been passed, and she is now on the red eye coming for the final round of testing to see if surgery could happen. We could even have a date set THIS WEEK for Hope's surgery. To say that it is all so miraculous and surreal would be an understatement.
Boston Children's Hospital has NEVER had what they call a samaritan living liver donor (samaritan being non family member or close known friend). Ever. There has only been ONE samaritan kidney donor at Children's. Ever. Even the name "samaritan donor" gives me chills. We saw one of Hope's doctors on Friday, and he asked how the liver transplant wait process had been going. I explained to him that our samaritan donor was flying in this week for final testing. He looked at Hope, then looked at me, and was at a loss for words. He then said "that would be astounding. I will keep my fingers crossed". I know it's not the crossing of fingers which is guiding Hope's story. But I thanked him, smiled, and basked in the story that is unfolding for my sweet baby girl under God's care.
Even if this does not work out, the fact that someone is willing to step forward to say YES to God's prompting in order to save my baby girl's life is breathtaking. Never, in a million years, would I have dreamed of this. Only God could orchestrate such a miracle. And I am the luckiest mother to be a part of it. Samaritan. Believe. HOPE!!