Magic Medicine…. Day 2, Round 7

We are at the clinic while Ronan does his second day of his new chemo. This morning we did his oral dose at the house before we left. Mimi Kay stopped and picked up a Slurpee and I put on my rubber gloves, opened his chemo pill, and dumped the powder into a little cup of Slurpee so he wouldn’t taste it. He hesitated a bit but then downed it like a champ. We arrived to the clinic and they got things moving fairly quickly. Bethany and Fernanda both came and sat with us for a few hours. It was so nice to have their company. Makes the time pass more quickly. We have a couple of hours left of hydration and then we will be set to go home for the day. Ronan is more than ready for that and has asked for the past hour when we can leave.

Today, my stomach is in knots. I know in my heart of hearts that we are taking a different path for a reason…. the only reason which is because we are going to get Ronan rid of this disease FOREVER. It’s the not knowing which path we are going to take that is hard; the anticipation of how this chemo will work is eating me alive. I know I can’t worry too much about the future because we just have to take it day by day. We have a lot of decisions to make and I am so thankful to be surround by the smartest people in the world to help us make these decisions. My head hurts, my stomach hurts, I can’t stop crying and I’m tired and just want to fast forward time until Ronan is back to being cancer free. Once again, my crazy intuition tells me that he is going to be fine and grow up to live to be 100. I know my intuition and it is always right. I also know that it is going to help us in making the right choice for Ronan. I just have to trust in it and trust in myself.

I can’t stop crying today and it is over everything from how blessed I am to have the amazing support I do, to feeling sorry for myself, my family, and my son. It’s been a roller coaster of an emotional day. This new life gets overwhelming at times but I have to just keep pushing forward. There has to be a light at the end of the tunnel someday…. it’s just going to be awhile until we get there. We will continue this fight for the rest of our lives for Ronan and everyone else until a cure is found.

After Ronan and I left PCH it was about 2:30 and he was begging for Mexican food. Like father, like son. I took him to one of my favorite spots, America’s Taco Shop and he ate a huge bowl of salsa, chips, a carnita taco and an entire burrito! The kid has such an appetite and it was so nice to sit outside with my son and bathe in his happiness. My heart skipped a beat. The love I have for him is almost painful at times. After we were finished, we were walking to my car and he grabbed my hand and goes, “Thanks for the date, mom. I love you.” I was overcome with so many feelings at once; of my stomach dropping but my heart was singing. I never knew before all of this how many emotions one could experience all at the same time. These little life lessons I’m learning are not always fun, but I am thankful for them. Ronan and I came home, both tired and we curled up in my bed, I read him a book and then he does what he always does which is snuggled his little head below my chin and goes, “Goodnight Mama.” We both fell asleep. Although my sleep was restless, I still needed it.

Tomorrow, we will be admitted into the hospital until Monday to finish this round of chemo. He is handling it so well and is running around like normal. On Tuesday we will go out to San Francisco to meet with Dr. Katherine Matthay at UCSF. She won’t do a consult without seeing Ronan so off we go. Not excited about putting Ronan on a plane, but we will make sure to be extra careful. We have to get opinions from others so we will do UCSF first, and then head to CHOP in Philly, in early March. That is the plan as of now; but we all know how quickly plans can change. It will all have to do with how well Ronan’s immune system is doing as far as keeping our travel dates.

Thank you for checking in on us and keeping our little guy in your prayers. We know they are going to work. We hope you have a very blessed weekend!!

xoxo

This is what we are up against

Dr. Eshun,

OK. I have spoken to Dr. Matthay at UCSF, Dr. Kushner at Sloan, and Dr Kletzel.

 

Matthay would not advise over the phone, but would set a consult for next week once she’s seen the scans.  She did suggest that more chemo followed by MIBG would be a likely option.  She thought Ch14.18 would be important as well.  He concern was that Ronan may not be able to receive the Ch14.18 if he does not start stem cell transplant  within 9 months prior to diagnosis.  See http://clinicaltrials.gov/ct2/show/NCT01041638
The following MIBG with stem cell trial appears available:
Dr. Kushner has seen the Bone scan, PET, CT, MRI, and MIBG reports.  He wants to see the scans before making a formal recommendation, but he is inclined to one dose of topotecan (sp?) and the chemo it is paired with in a higher dose, then immediately into 3f8 with NK cell.  He says he is leaning towards this because he believes the MIBG spots are likely marrow since the bone scan was largely negative.  He said he would do MIBG later if the MIBG spots remained.  Kushner doubted the ability to use 3f8 if MIBG therapy is done first.  He said another benefit of this plan is lower toxicity which would allow Ronan to better tolerate chemo and radiation down the road.
I believe this trial is here:
Kletzel tended to agree with Kushner’s assertion that if the bone scan showed no discrete abnormality then the MIBG spots were likely marrow.  He also said that it is difficult to recommend anything without seeing the scans.  But, he liked the idea of MIBG therapy best because what remains is MIBG avid.  Logically, if the cancer has MIBG uptake then the MIBG therapy should be effective.  He then said antibodies would be important afterward.  He was concerned about further treatment that would change the cancer to not be MIBG avid and then MIBG would not be effective.  Overall he was not optimistic about future treatment.
Kushner and Kletzel both agreed that stem cell transplant, single, tandem, or even triple will not likely make a difference unless and until the MIBG is clear.  The data from the abstract seems to support this contention (although many of those on the abstract did not get antibodies).
All 3 were a bit surprised that all bone marrow biopsies and aspirits have been clean since cycle 5, the bone scan negative, but MIBG active.  But ultimately all three said NB doesn’t always follow logic.
I see the logic in both courses of treatment, but again does logic apply?
If boney, I tend toward MIBG.  If marrow, I tend toward MSKCC’s approach.
So, a primary question becomes: Do you believe that the residual cancer is boney, marrow, or both?
I hope we can discuss on Tuesday.
Thank you again for your help.
Woody Thompson