On June 23, 2021, our THIRD beautiful son, Crosby Dylan, was born into this world. He's perfect in every way... and looks JUST like his brothers.
On July 7, we got "the call" delivering the news... the soul-crushing diagnosis we begged and pleaded with God not to receive. Again. Our little Crosby also has ICF Syndrome, which is the same extremely rare immune deficiency dianogis our son Caleb received in 2017 on his first birthday. This essentially means that Crosby is currently isolated from the majority of the outside world, on several profolactic antibotics, and also in need of a bone marrow transplant in Spring or Summer (between April and June) of 2022 at Nationwide Children's Hospital in Columbus.
Crosby's health has unfortunately presented some new challenges for our family, ones that are not unique to ICF Syndrome, but are ones we did not experience with Caleb. Over the first few months of his life, Crosby greatly struggled to gain weight and thrive... lacking an interest in eating, not taking enough bottles, struggling with heavy/raspy breathing, and constantly vomiting upwards of seven to eight times a day at times. Over the course of that time, and MANY tests at Children's in GI, ENT, BMT and radiology, we basically had to chalk up his symptoms to severe GERD, dysphasia (trouble swallowing), aspiration (liquid going down into the airway) and, well, that he has ICF. We don't know how they are related specifically, except to say that ICF is associated with GI/eating troubles- since it involves a poorly working immune system.
The everyday stress/worry of trying to meet a bottle count and calorie goal became far too difficult... and the goal was unobtainable. Ultimately, we all had to give in and give Crosby an NJ feeding tube, which was inserted into his small intestine via interventional radiology (IR) at Nationwide. The NJ fed directly from his nose into his stomach (nasal jejunum), to hopefully bypass his tendency to constanly throw up eveything. However, after about two weeks, we were ready to rip out the NJ ourselves. Crosby was growing, but extremely fussy and ironically throwing up EVEN MORE. After concluding that the NJ tube likely caused an obstruction in his GI tract due to his small size, we quickly decided to try the simpler NG (nasal gastric) tube, which feeds into his nose down to his stomach. Though it's easier to pull out (ask Crosby how many times a day he tugs on it...?!) and often needs replaced, it can be inserted at home or via the help of a nurse without a trip to Nationwide Radiology.
But now... amongst all this stress. We received the BEST news. Crosby has a donor! A selfless young man from Poland is a confirmed 10/10 match, and is commited to donating his bone marrow in either April, May or June 2022! A date for the BMT has not yet been set. Crosby will have an overnight visit one month before admission for extensive bloodwork and testing, and just like Caleb, will then be admitted for about six weeks, followed by about a four week stay at Ronald McDonald across the street. Admission will begin with port (central line) and PICC line placement surgery, followed by several weeks of chemotherapy, the transplant and the "count recovery" period. Crosby will need one extra round of chemo due to having an unrelated donor, as well as to prevent the need for a stem cell "boost" or loss of his graft (new immune system). (Caleb unexpectedly needed a boost six months post transplant, partly due to the lower intensity chemo.)
We often ask ourselves, why is this happening AGAIN, for a second time... but a wise, dear friend asked us to consider this not as a restart... but a continuation. Well, here we are. Five years later, and our medical journey continues. The isolation, the questions, the medications, the sleepless nights... continue. What if the story never really "ended?" We were hoping to be "done" with the suffering, the pain, the loss of "normalcy." But this was certainly God's plan all along. We don't understand, but we must move forward and try to accept that we are exactly where God wants us to be. Acceptance. Hope. They're daily decisions, and ones that can be very difficult some days.
However, we are not alone in this diagnosis this time around. Caleb was the first discovered in the USA, but he certainly wasn't the last. Although we would never wish this upon another family, we are extremely fortunate to now connect with a very small community of parents around the world carrying the weight of the same diagnosis with and for their children... each and every day. Who just want their children safe and healthy and happy, just like we do. Just like every parent does. And just when we thought we were the ONLY known parents in the world, with now TWO kiddos with ICF... we are blessed to have the support of one very special family who has walked and continues to walk this road before us (you know who you are.)
Thank you for reading our story and following our journey... and may God bless you and your family.
