Vince and I have always had strong faith that things in this life are beyond our control. We do our best in all things, pour into our marriage, and trust that we will be led where we are supposed to. Since our son Jonah was born in 2020, he has taught us to "expect the unexpected," and this year has been the biggest lesson in that theme.

Our family has been blessed. We just switched to a church in Fulshear that we love, Vince volunteers yearly at the MS 150, and I own a business in Katy helping kids and their families through my specialty of pediatric pelvic health. We love to pour into our friend circle, and we make “brisket and a blanket” for our friends who welcome new babies - Vince smokes meat as a postpartum meal, and I crochet a baby blanket filled with prayer as I make it. We love to pour into others, our family, and our marriage. Beginning in January 2024, we have become the recipients of others pouring into us. Accepting support from the people around us is a new process, though becoming more and more familiar.

December 2024, we were telling our close friends that I am pregnant (baby #3 due July 2024!). I had a pretty memorable conversation with some friends who know that we had a miscarriage in 2021. We had Leo at 14 weeks, and we held him in our hands - he was a fully formed, tiny baby with ten fingers and toes. Our friend asked if there would be a time that I would feel “safe,” or less anxious during this pregnancy because of our previous loss with Leo. I didn't hesitate with my response. I told her that we are never in charge of our life timeline, including our kids. God could decide at any moment to take Jonah or Genevieve, or this new baby, and that was something that we simply cannot control. Even though losing Leo led us through quite a bit of grief, we are at peace knowing that there is a plan bigger than our own that we will never understand. The same peace would be true for us if Jonah, Genevieve, or this baby were to die tomorrow. It would be painfully hard, and there would be a lot of grief involved, but there would also be peace, knowing that God is good all of the time.

January 2024 is when everything started with Jonah’s medical workup and our lives unexpectedly met challenge and change.

Jonah has slowly moved through the diagnosis process that all started with some weird, increased bruising. His every-growing strand of "beads of courage" show the number of pokes, blood draws, IV line placements, and blood transfusions to keep him safe and healthy while we worked to figure out his underlying diagnosis. After his first bone marrow biopsy on January 22, Jonah was officially diagnosed with congenital bone marrow failure, called Aplastic Anemia. With this diagnosis, comes Jonah's immune system struggles. He has had two bouts of infection because of his severely immunocompromised state - one of these leading to an unexpected week-long admission to the hospital. Genetics are still being worked up, but Jonah and his siblings likely all have the same risk of this disease process. This means that Genevieve and our unborn baby might develop bone marrow failure as well and have similar medical paths.

The treatment for Jonah’s congenital Aplastic Anemia is bone marrow transplant. 

Jonah has gone through multiple x-rays, echocardiograms, EKGs, bone marrow biopsies - all in the interest of making sure his organs and body can withstand the chemotherapy he will receive in the eight days leading up to his bone marrow transplant. In order to give Jonah “new” marrow from a donor, we need to Jonah’s current marrow and immune system. So while Jonah doesn’t have cancer, his treatment is very similar. 

His BMT admission was originally scheduled for April 14th, however has been delayed twice due to recurrent fevers, fungal infections, and seven different hospital admissions. Now scheduled for June 9th, Jonah will spend about 6 weeks isolated to the BMT floor at Texas Children’s Hospital receiving chemotherapy, the actual bone marrow transplant from a donor whom we may never meet, and then weeks of monitoring to watch for “engraftment,” or more simply, the new organ of this donor’s marrow taking place of Jonah’s old marrow. 

The goal is that Jonah will *finally* start to make his own red blood cells, white blood cells, and platelets. Until then, he might be dependent on blood and platelet transfusions for the next 3-6 months, our family will have to stay vigilant and quarantined for about a year until his immune system normalizes, and Jonah will have yearly organ assessments for the rest of his life to check for delayed organ toxicity from the chemotherapy, and something called “graft versus host disease.” To say we’re in this for the long run is very true reality for our family. 

After a very quick process of deciding to sell our current home, we have a new home in a community in Katy, called Elyson. We will move in sometime June 2024. Our medical team has advised us that the more clean Jonah’s post-transplant environment is, the better. We’re excited to be in this beautiful new home and community, and to do everything in our power to help Jonah be as healthy as possible. 

We’re installing air purifiers, dehumidifiers, water purifiers, higher power exhaust fans, buying new sofas, mattresses, and installing other items in our new home to keep our environment as free from toxins as possible. The lifestyle shift has been dramatic, as well as the financial one. 

I am no longer seeing patients, while trying to run my business and pay for childcare while I take Jonah to infusion appointments and other visits (because taking Genevieve for hours long visits, especially during Jonah’s harder moments, isn’t the easiest). The cost of driving to the medical center multiple times per week, parking, and extra time off for Vince to join when he can is beginning to add to the medical bills. We are doing our best to be as financial prudent as possible, but the reality of the financial strain is evident. This is quite a season we are living, but like all difficult seasons, we hope that this is a short one. 

Ultimately, nothing is promised. Jonah might relapse and need another bone marrow transplant. He will be at a higher risk for blood cancers, and other organ failures for the rest of his life. He might die. But Jonah might also thrive and live an almost-normal life. We’re excited to see what our life is like in a year from now, and to see the blessings that come from this hard season. Vince and I know there are many different outcomes of might happen. We have surrendered to this whole path that God has put in front of us. We can’t change anything about this, so all we can do is to surrender, do our best, and know that whatever happens, Jonah’s life has been planned to every detail. Thank you for reading, and ultimately being a part of our story. Just you knowing about Jonah brings us hope that there are people praying and thinking about him, and in that, there is immense power. 💚

With gratitude and hope,

Katie