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Wednesday, July 8, 2015

On a Personal Note...Prayers Needed

I have intentionally avoided talking about anything personal on my blog. But that is changing today. If you have read my bio you will have a small understanding of where we are in life. However, I am writing this now to ask for your prayers.

We are currently inpatient at Seattle Children's Hospital (one of the BEST children's hospitals in the USA). This last year+ has been very challenging for our family. A lot of time has been spent apart. There was even a time when the 4 of us were in 3 different cities, making us more than 3 hours away from each other. With an almost 3 year old and a 15 month old, it can be very emotionally stressful for all of us. When Ezra was diagnosed with SCID (an incomplete immune system) at one week old, we had no idea the journey that we were about to begin. He had a successful bone marrow transplant completed when he was 9 weeks old. His brother being the donor. Since then it has been a long process of recovery. He currently has a suppressed immune system to prevent GVHD (Graft vs. Host Disease - when the body reacts to the donor's cells growing inside of
it) and therefore has many restrictions on life. He can not play in the grass or dirt. Swimming pools are out of the question. Church isn't even a possibility for him at the moment, too many kids with too many germs. Although this season of our lives is unbelievably dreadful, it could have been much worse. In January 2014 Washington State began screening for SCID with their newborn screening. Ezra is the first baby born in WA State that tested positive on the newborn screen. (See links below for media stories.)  Seattle Children's Hospital along with  Seattle Cancer Care Alliance came up with a game plan for Ezra. He underwent chemotherapy at 8 weeks old and had the transplant a week later. There were a lot of risks going in and we had to deal with some nasty side effects. But the alternative was to wait for Ezra to get sick and die.

Transplant was successful, but he has had continuous problems with rashes and throwing up. Signs of GVHD but not necessarily the sole cause. We are currently admitted because his sodium was extremely high. We have been able to bring it down, but there is no knowledge as to why it was so high in the first place. Fluid intake was fine and salt intake was normal. He also tested positive for a urinary tract infection. Depending on the specific bacteria that is growing will determine if there are any oral antibiotics he can take. If he needs IV antibiotics, we will be here for another 7 days. My husband Zach will take Judah home on Friday (since we were planning on being here until Friday anyways) and will come back next week to pick me and Ezra up. The doctors have had to do a lot of guessing and trials with medications. It is frustrating and all I want is for my baby to be well and whole. If you think about us please send up a prayer for Ezra and our family.

I truly believe that the Lord has great plans for little Ezra. His name means "Help"(yes The Beatles song is his song). Who would have known that not only would he need so much help in the beginning of his life, but that he would be bringing help to so many others. He truly is a pioneer in the medical field and he encourages me every day to live life to the fullest and to cherish each moment. If Ezra's story touches you at all, I ask that you please consider becoming a donor. Getting on the Bone Marrow Registry is very simple, you swab your mouth with cotton and mail it in. Be the Match is a great organization, I highly recommend going through them.

Thank you for your prayers,

Rachel

Fred Hutchinson Cancer Reseach Center was also involved with Ezra's care.

Media Stories:
Seattle Cancer Care Alliance - Ezra Dixon 
Spokesman Review
KOMO News
King 5 - The Future Starts Here
Seattle Children's Connection Magazine

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