Not Ready to Let Go

Jan 22nd, 2015

John has once again relapsed.  His most recent MRD test result showed a Leukemia burden of 0.089%.  Rich and I are devastated.  With each relapse we experience a new level of heartache, a heartache that takes our breath away.

We received the news Tuesday and I delivered it to John Tuesday night.  I tried to be strong but I could barely get through the word relapse without decompensating.  We hugged each other for a long time & cried until no tears were left.  As he drifted off to sleep I pulled up a chair next to his bed and draped my arms around his legs.  I love him so much and I wanted him to feel that love.  

After sleeping on the news John & I had the hardest conversation we’ve ever have to have.  When is enough – enough?  Did he want to keep fighting?  He told me he didn’t want to “give up”.  I have decided that at this stage of his journey, I hate that phrase.  I tried to explain to him that he wouldn’t be giving up, he would be letting go – letting go of the suffering if he’s too tired of fighting.  I shared with him my view of Heaven, a place where he wouldn’t be poked and prodded, nauseated or in pain – a place of peace – a place where someday we would meet again and “hangout forever”.  I wanted him to know that he shouldn’t fight for me or Rich, we can’t selfishly ask him to fight for “time” with us anymore.  He didn’t ponder long before telling me that he wasn’t ready to “let go”, he wanted to keep fighting and that he would let us know when enough was enough.  He amazes me with his continued determination and courage.  So, we will follow his lead and let him guide us.     

Why didn’t the Transplant work?

John is still 100% donor but he was too slow to engraft and his new immune system wasn’t strong enough to fight off his very resilient Leukemia.  They feel his compromised liver caused his spleen to sequester the stem cells, not allowing them to engraft properly.   

The plan

He started chemotherapy last night, a very low dose, just enough to keep his Leukemia from blasting off.  Why so little?  We need decent counts.  Next Monday John will be transported to the local children’s hospital, Le Bonheur, for  a TIPS procedure.  He will be admitted to their ICU Monday night, have surgery Tuesday morning and spend at least one more night in the ICU before being transported back (in an ambulance) to the ICU at St. Jude – there is so much more to the transfer … given John’s compromised status it has taken days to orchestrate the actual transfer and organize his care.  Its not a procedure usually done on children so it’s in John’s best interest it be performed where they have access to all the right instruments, appropriate staff, etc.  A Transjugular Intrahepatic Portosystemic Shunt (TIPS) is placed between the portal vein and the hepatic vein.  The hope is that the shunt will reduce the pressure in the portal vein, stop the sequestration of cells in the spleen and diminish the varices to decrease the probability he will hemorrhage from ruptured varices.  There are many life-threating complications to this procedure (I’ll let you Google it) – but after much consideration and input from other hospitals (CHOP and Dana Farber) this is our best chance at a alleviating the pressure in John’s portal vein (caused by his liver cirrhosis).

Upon his return/recovery we will test his MRD again and restart ReIntensification.  A week of knock down, blow out chemotherapy – aimed at achieving remission so he can head back to BMT for another transplant.  We have almost no details at this point regarding the actual protocol or conditioning regimen they will use – all we know is that Rich will more than likely be the donor.  A second transplant is risky, and they certainly aren’t making us any promises.  This is our Hail Mary Pass, made in desperation with only a small chance of success.

As you can imagine Rich and I are heartbroken and trying to process the new reality we are faced with.  Every minute seems like forever, we just tell ourselves, “get through the next few minutes”, and we do.  That is how we plan to make it through this part of his journey, minute by minute.  

Sweet, sweet Bella is a pillar of strength, also determined.  She’s fought along side John for almost 3 years and she’s not about to leave his side now, literally or figuratively.  She hasn’t left his bedside in weeks.  She also sleeps in his hospital suite on the sleeper coach.  She works diligently on her studies during the day and steps is as my helper at night – never complaining, never looking away.  She is truly a survivor too and I couldn’t be more proud of the young lady she is becoming.  

I’ll do my best to keep you all updated but writing is hard, it’s just another reality check that my heart can’t always tolerate.  

Please pray for our family and all of the families at St. Jude whose children are fighting for their lives.   

Our children deserve a lifetime – and only through research will they get that chance!  Please join our family in making a difference by donating to St. Jude through our annual St. Jude Evening of Hope 


Love, Kathy