Still Holding on to Hope - Guest Post by Kelly Crum

Hello from a guest updater. Our friend Stacey and I made a quick trip to Memphis this weekend to lift up the Hagens and to try and to tell them in person about the incredible amount of love and support that is with them on this journey. I know that all of you who read Kathy’s beautiful posts are anxious to hear the latest news as you pray for John and his family.

First and foremost, right now John is resting comfortably and having what one of his nurses described as “boring” days. Right now boring = good. Although tired and extremely weak from the grueling transplant process, John is stable and even played a few hands of UNO with the family yesterday. Bella, Rich and Kathy are savoring these moments, all the while still hoping and praying for John’s forever cure, and most of all for his comfort and peace.

On the medical front, here is the latest:

Last week, John did go to Le Bonheur, the children’s hospital in Memphis, to undergo the TIPS procedure to put a shunt in his liver. Unfortunately, the pressure in his portal vein was too low (still high but not high enough to keep a shunt open) to proceed with the procedure. Needless to say, this was another devastating blow, as it prevented the surgeon from fixing the problem that most likely caused John not to engraft from the transplant. Fortunately, John continues to be cared for by the amazing doctors at St. Jude, who along with his parents, have consulted with other worldwide experts, to devise a Plan B.

 Plan B

On Monday morning, John will undergo surgery at St. Jude to have his spleen removed. The surgeon was very blunt about the risks involved in a surgery for someone whose organs are as compromised as John’s are.  Once John recovers from the surgery (hopefully a week or so), he will begin a five-day regimen of re-intensification chemo, with the goal of getting his cancer back in remission (MRD= 0). John’s beloved Dr. Pui has consulted with other experts all over the world to try and create a protocol to cure John. After re-intensification, they will do another MRD and make decisions about the next steps.

More than anything, the Hagens need our prayers that God will guide them through the next part of this journey and bring them all peace. John’s situation changes rapidly and they are in unchartered waters--most certainly having to make decisions that no parent should ever have to face. Yet as you know from reading Kathy’s posts, they meet each challenge with grace, always meeting each challenge head on, still holding on to hope.

Next weekend is the Hagen’s fundraiser in Charlotte, the Evening of Hope (www.stjude.org/eveningofhope). It is not too late to join them in supporting all the children and families who find find hope at St. Jude. 

Much love from Memphis,

Kelly Crum