November 20, 2015 The roller coaster ride continues

On November 21, 2015 by Michelle Love

What a roller coaster we’ve been on lately. This is going to be a bit long, but totally worth the read. I promise.

On Wednesday (Day 13 from cell infusion), BJ’s white blood cell (WBC) count went up to 72k. His doctor came to talk to us about it, and was very pessimistic about the outlook of BJ’s success on this clinical trial. Thankfully, BJ didn’t fully hear that news, even though it happened right in front of him, as he was still heavily medicated. His doctor also said that he thought we should go ahead and put in the paperwork to transfer BJ back to Charlotte (Levine Children’s Hospital) in case it came to that. We needed to have the approval from insurance ready, so that he could get back to Charlotte, and start chemotherapy again if it was determined that this therapy wasn’t working. I immediately felt defeated, crushed, completely weighed down. This clinical trial is really BJ’s last option. After calming down and thinking more logically, I asked to talk to his doctor again. I asked him to contact Dr. Grupp again, at CHOP (Children’s Hospital of Philadelphia), and ask him if BJ’s low CART cell count at infusion would make the process take longer. I told him that in my opinion, BJ’s white blood cell counts were still in a plateau, even given the rise in the last few values. He still has high fevers, and high CRP and LDH values, which are all signs of the brewing battle. I told him I didn’t want to give up on this just yet, that to me, it still looked like it was working, and maybe he just needed more time. If we pull the plug, what’s the other option going to be? He agreed to call Dr. Grupp.

On (Day 14) Thursday, actually 30 minutes into Thursday, I was awake, pouring out my heart to God and asking, no, pleading for guidance. I pulled out my Jesus Calling devotional, and read that day’s entry. This is what it said:

(November 19)
LEAVE OUTCOMES UP TO ME. Follow Me wherever I lead, without worrying about how it will all turn out. Think of your life as an adventure, with Me as your Guide and Companion. Live in the
now, concentrating on staying in step with Me. When our path leads to a cliff, be willing to climb it with My help. When we come to a resting place, take time to be refreshed in My Presence. Enjoy the rhythm of life You already know the ultimate destination of your journey: your entrance into heaven. So keep your focus on the path just before you, leaving outcomes up to Me.

Wait for the Lord; be strong, and let your heart take courage; wait for the Lord! Psalm 27:14 ESV

More tears came, as I realized I was just given the answer as directly as it could possibly come. And the peace that followed was just amazing. When BJ’s labs were back from the midnight draw, his WBC count was 64.8k. So it had dropped, but not to his doctor’s satisfaction. He still had a glum look, and said he would need more tangible proof that the treatment was working. He said, in lieu of the test results from the research lab showing the presence of CART cells in his blood, he would need to see a significant drop in BJ’s WBC count. I told him I still believed it was working and that I felt we needed to give this more time. The noon lab draw showed BJ’s WBC down a little more, at 57.1k. The doctor came back in later that afternoon to let me know that Dr. Grupp had called. His advice was to wait until we get the Day 10 and Day 14 labs back, and do not pull BJ off the study. He also said that the low cell infusion would make this process take longer. Carly’s 11th birthday was also that day, and we talked openly about BJ. She also believes that he is going to make it through this. She said her only birthday wish was that BJ would get better.

Friday (Day 15)…Today’s midnight lab draw showed another small drop in BJ’s WBC count, at 50.8. He is still having high (up to 104.5) fevers, still somewhat confused, and is sleeping (or trying to sleep) most of the time. He is still on TPN and lipids (IV nutrition and fats), and is still needing about 3.5 liters of oxygen. The morphine drip was decreased, and that has helped some with his mental alertness. BJ’s noon labs came back this afternoon and his WBC is now 32.5k. ((Let me say that again…32.5k!!!!)) The nurse and I hugged each other, and tears of complete and utter joy started flowing. I have NEVER been as happy to see a set of numbers in my life! The nurse told BJ the news. He looked at me and I told him again. He understood, and started to cry. I think what he mumbled was “finally”. He reached out his arms, and I hugged him, and we cried together.

So, while his doctor is still cautious to say that this huge drop in the WBC is an objective indicator that the CART cells are working, I fully believe. How can you not believe it, with everything else matching the symptoms, and seeing a 39.5k drop in WBC count over the past 48 hours? He did say that with the super high Ferritin levels, BJ will still continue to have high fevers for several more days. Things are headed in the right direction. I believe that BJ really is going to beat this.

In BJ’s words…..”Finally”.

Much love and gratitude to all of you who follow his fight, think about him and continue to pray for BJ to kick this cancer once and for all. There is power in prayer!

#Fighter #CureForBJRound2 #BJStrong #FutureNavySEAL #KeepPounding