The doctors have been marvelous but let me explain something, this is how at least in our lives God is real and actively working. Because everything about Daniel’s journey has lined up in just a way to prove he is a living, breathing miracle, specially gifted to us by God. Let’s look at a brief recap of his life and the stacks against him
- Conceived after 5 years infertility and miscarriage
- confirmation by doctors in the case of pregnancy my inability to carry to full term – born at 32 weeks pre maturity – HEALTHY!
- 23 days of fever at 12 months, does not develop MAS complication UNTIL being under the medical care of some of the best doctors in Canada
There is something else you should know, when Daniel turned one – Will and I had a serious conversation. 5 years we tried to get pregnant with Daniel and he was and is in our mind an incredible miracle. We had no expectations that we would have another baby, we loved the idea and so desperately wanted to but felt maybe we would be asking to much? that it would be greedy, to want more than the blessing we already received? but we also felt that if it was not meant to be or if it would take another 5 years to get pregnant than that’s okay, we just didn’t want to close the door on the possibility.
So…in sports terms we pulled the goalie and trusted God for anything. Well we were in for a little surprise. In the midst of all this, stress and sleeping on a cot in Daniel’s hospital room, feeling constantly tired and sick. We realized we were pregnant!! There was no waiting 5 years, in what felt like a dark dark valley we got a ray of sunshine.
We found out just recently we are having a baby GIRL! which is such an amazing gift, but here is another really awesome part of Gods plan ~ not just for Daniel but for our daughter.
When testing for ongoing MAS the doctors explained that the only cure for MAS would be a bone marrow transplant. For anyone familiar with bone marrow transplants, it is…like any transplant a very major operation that requires months of recovery and a very specific donor match in order to even do the surgery.
The doctors explained to us that for most of us, if we were to require a bone marrow transplant the best match for anyone would be a sibling, (think about this now) waited 5 years for Daniel, didn’t know we could get pregnant again, got pregnant with our daughter right away during a very difficult time, best possible match for Daniel’s bone marrow transplant = SIBLING!
God knew this little girl could and would be a source of Hope that we so desperately needed. Now the thing is she would definitely not be old enough to be able to donate enough bone marrow that Daniel needed but the doctors were elated when we shared our newly discovered pregnancy. They explained that banking our babies cord blood would act as the perfect source for Daniel’s bone marrow transplant because the stem cells in the cord blood are so new that they had the ability to mold into whatever makeup Daniel needed to be the best possible match for transplant.
So to give you a brief recap of the medical side of things:
- Doctors are testing Daniel’s blood for an auto inflammatory disorder known as CAPS disease
- Doctors are doing a bone marrow aspirate on Daniel to test for possible ongoing MAS (also known as HLH)
- Doctors immediately begin treatment of unknown auto inflammatory disorder and MAS – scary fatal blood complication with high doses of steroids and a daily protein injection, that Daniel will likely need for the rest of his life as there are no official cures for auto inflammatory disorder.
These treatments began during our time at Toronto Sick Kids, and within 24 hours of treatment, we immediately began to see an improvement in Daniel (Thank God!)
Also, a little side note so far…our daughter appears healthy and strong. The doctors do have some concerns as Daniel’s auto inflammatory disorder is a genetic disease (so there is a possibility the baby could also have it) but also because Daniel was a preemie, and the doctors didn’t know if I could carry to full term, they do have some concerns she might be born early as well.
So for those of you who are praying along with us in this journey. Thank you so much for your prayers for Daniel, could your prayers also include that our daughter make it to full term, healthy and strong.