Dearest friends,
I’m afraid this blog is going to be a little different for a while, as I will likely be using it mostly to provide updates for friends and family on little Felix. This is the best and easiest way I know to keep loved ones up to date on our baby’s condition. I hope to be as thorough as possible, both for those who love him and are concerned about his well-being, and so that those who are the praying type know what, specifically, to pray for.
As most of you know, last Monday (December 3), when Felix was only 12 days old, I got called from the newborn screening center at the Victoria Hospital in London, letting me know that Felix’s blood test got flagged for a rare, life-threatening disease called SCID — severe combined immune deficiency. We were called in to get him re-tested two days later, since false positives are very common. So we made the two-hour drive out to get him assessed and to have his blood taken. He appeared perfectly healthy, aside from some oral thrush, which is comon in babies, and a mild cough.
By the time we had arrived back home, we were called again — the initial results seemed to confirm the diagnosis. We were asked to return first thing next morning. We were warned that we might end up being admitted and have to stay the night.
So we left Lydia with grandparents and made the trip back out to London with a change of clothes and toothbrushes. As soon as we arrived, the bad news started rolling in. It hasn’t stopped.
We are now admitted here long-term. We have been here a week, which is just the start. We have been told that best-case scenario, we will be in hospital at least for the next three months, but very likely it will be much longer.
The diagnosis has been confirmed. The good news is that the disease is treatable, possibly curable.
As I’ve mentioned, this genetic disorder affects Felix’ immune system — he is unable to produce t-lymphocytes, which are necessary to fight infection. In other words, he has no immune system. Any bacteria or virus that he gets exposed to can be life-threatening. So far, he’s done quite well, though recently they’ve identified a bacterial infection in his bladder and an unidentified infection in his lungs. They are treating both with antibiotics until they can learn more.
Fortunately, he doesn’t seem to be suffering too much as a result of these infections besides the cough. The greatest source of suffering comes from the constant testing. He gets blood work every day, and has had numerous catheters, a spinal tap, a lung swab that required sedation, three x-rays, and an ultrasound. He is due for another ultrasound, more blood work, and a catheter dye test tomorrow.
Meanwhile, to prevent any exposure to pathogens, Felix is in strict isolation in a sterile environment. To see him, we must wear masks, gloves, and gowns. I undersand that this will be the case the entire time we are in hospital.
Felix’s absolute best bet for recovery is a bone marrow transplant. Ben, Lydia and I have gotten our blood taken to see if any of us is a match. If we are, and the transplant is successful, he will essentially be cured. If we are not, there are other treatments available, though they are expensive and life-long.
My two greatest prayer requests are these:
1. That none of his current infections spread or put him in serious danger until he can get treated; and that he doesn’t develop anything new.
2. That one of us is a match for a transplant. Lydia is the most likely match, and the odds are only 25%; Ben and I are even less likely.
Thanks so much for all your love and support. It has meant more than you can know. I will try to keep you updated as I can.
You are in our prayers daily. Thanks for the update and for letting us know how we can pray.
Abbey Dupuy recently posted..Advent: Jesus, anyway.
praying that one of you is a match for little Felix.
Constantly praying. All day. I’m putting his picture up to remind the kids. Praying that you guys are a match. Thank you so much for the update, and please keep us informed if there’s anything we can do!
Praying so hard for you guys.
Praying for you!
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I have never commented on your blog but I have been a long time reader. Just wanted you to know that I am keeping Felix and the rest of your family in my prayers. And I will be especially praying that one of you guys is a match.
This is my first time leaving a comment on your blog, but I’ve been reading for awhile and have the link saved on my favorites. I felt this warranted leaving a comment so you know people are reading and praying. So I will surely be praying for Felix, you, and your family as a whole. Stay positive.
Sending you love and light. What a terrifying thing to happen to your newborn. Praying for you daily!
Praying for you and your precious one – that your infant is restored to perfect health. Also praying for you, your husband and your daughter: shalom & joy.
Peace and Prayers for Felix and you all. May God’s Blessings be a comfort and support during this difficult time.
Praying for all of you!
Praying for him and you.
Thank-you for posting this update. You guys have been on my mind constantly since I saw your post last week…. We are praying for a match for your sweet baby boy ((((hugs))))
Continuing to pray for Felix!
Baby Felix will continue to be in my prayers every day.
We’re praying for Felix and your family – for strength and health for everyone.
Oh my heart just sunk when I first heard the news that he had a disease. It sounds every bit as trying as one might think or fear. Know that you are being prayed for during this holiday and take heart knowing that many are thinking of you right now.
Everyone reading this please goto http://www.onematch.ca. this is the Canadian bone marrow donor database. It’s easy to sign up and the test is simple. Let’s find Felix a donor.
We are praying for you and Felix every day.
Praying for you all, and especially praying that you find a match.
I’ve been praying for you daily, especially that one of you is a bone marrow match for him! My small group is praying for him also. Thanks for posting an update – I will pray for everything you mentioned!
I’ll be praying, Kathleen, for Felix and your family.
I’m sending my love to you guys, be strong.
Kathleen-
I don’t know you personally, but I have read your blog for quite awhile. I am thinking of you, your family, and the medical staff involved during this season. If we can do anything more than pray, we would love to.
I’ve never commented, but wanted you to know that your little guy and family are in my prayers. I appreciate you updating us. I’m with Marcie, please let us know if there is anything else we can do.
Praying for you guys. I have an idea of what those longer hospital stays are like. Praying that you guys will be surrounded by support and the Spirit. Both are super helpful :)
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Just another person who has read your blog for awhile and is praying for Felix and your family.
Praying and praying and praying again. Lord, please let one of the family be a good match for donation so that Felix may be cured.
Laura recently posted..The ache: a litany of gratefulness.
Love and prayers for you guys.
Praying for you guys!! ♥
Praying for Felix and all of the family
The less control you have over the situation, the greater your faith that all the answers are in God’s hands.
He loves little children and he loves you
Pray that Felix will be safe and that the perfect donor is ready and waiting
Look after your own health too
Praying for the age of miracles and wonders
Love from Alice Springs
Australia
I am another one of your regular readers who never said a word before. I loved your blog title from the first day “Adventures in a Backward Kingdom”. That is where you are now, that is what you are telling us. Everything you know about being real and earthy, crunchy and thoughtful, you are using all that now in the high risk NICU in this stunning crisis. This is so backwards.
My thoughts are with you, as we all try to follow the Wise Men who don’t know where they are going, other than they are trying to follow light, when the day is at its darkest.
I am sending you prayers and love. Especially praying for a quick bone marrow match. Also feeling gratitude (again) for you.
Been reading since your blog on engagement and marriage. Sending all my prayers to you at this terribly difficult time. May God fill you with the peace that passes all understanding and use this time to make you even stronger as a family and community.