We’re not married…. we’re still dating;)

I wish I could tell you tonight that we have our answer. But I can’t. Woody and I both left the house on the same page this morning, thinking we knew which approach we were going to take. That all changed after meeting with Dr. Adams, the head of Stem Cell Transplant at PCH. I should have known the answer was not going to be so easy. Woody, Fernanda, and a I sat across from Dr. Adams and Woody did all of the talking. Fernanda sat and wrote notes and held my hand; I sat, listened, absorbed, and cried. At one point I looked up and told everyone I was just trying to do my best not to throw up everywhere. Dr. Adams looked at me and said she didn’t blame me, she was devistated that she had to be having this conversation with us. But, she said she still feels like Ronan can be cured…it’s just going to take a little more work than we would have liked. She said we have a ton of options available but unfortunately, nobody knows the right answer. The decision we are going to have to make is going to have to be based on all the data we collect and a gut feeling. Those were her words exactly. I told her I’d be gut feeling, and Woody could be the data:) Sounds like a perfect match to me. What Dr. Adams would like to see is us do 2 more rounds of a different type of  chemo here, than rescan Ronan and make a decision after that. She does not want us to jump head first into anything. Woody and I both agreed that this sounded like a good idea to us as long as it won’t close any doors as far as other options go. We are waiting to hear back from Dr. Kusher at Sloan to see if he is o.k. with this. We don’t see how this would hurt Ronan at all, if anything everyone seems to think we can get rid of some more of his disease this way.

There are not many people in the world that I would trust with the life of my baby, but Dr. Adams is one of them. I don’t have a super personal relationship with her for obvious reasons, but I don’t need one to know that she is a very special woman. She is brilliant beyond belief, compassionate, open minded, and has dedicated her entire life to this. She truly cares about each and everyone of her patients. She has this amazing aura around her and I feel it whenever I’m in her presence. After we left her office, Fernanda and I went out into the main waiting room to take care of some business. Fernanda looked at me and said, “I still have goosebumps after being in that room with that woman.” Fernanda felt it too. This woman is a gift to us and I want to keep her involved in Ronan’s care for as long as possible.  I fully trust her and respect her opinion so much. She wants to give Ronan the best shot possible is willing to do whatever she can. She was very hopeful because Ronan has responded so well and as I said before, she just thinks he needs a little something extra. Staying here and starting chemo would give us more time to figure out our exact plan. I hate just to jump right into anything if we can take baby steps instead to really make sure what we are doing is right. Fernanda had Dr. Eshun’s assistant get all of Ronan’s scans out to about 6 different doctors. We will take all of the opinions we can get right now. This is not the end of the road my friends, not even close. This is the beginning of a new path we are going to take to get Ronan well. I am embracing it with open arms and know it will be the right decision, when the decision is made. I trust in the higher power who is in charge of this…..whomever that may be as I believe there are many forces behind getting Ronan well.

Once again I am in awe of my husband. I sat today and watched him fire out questions to Dr. Adams that I think she was even surprised to hear him ask. He knew the names of all of the studies, the side effects, what things would open doors and what would shut doors. It is pretty amazing when you can watch someone like Dr. Adams be so impressed with a father and his wealth of knowledge. I wish I could have been of more help, but I cannot seem to detach myself from the emotional side of all of this. I don’t know what I would do without Woody. I said to Tricia yesterday, “Could you imagine if I were married to a moron and going through all of this?” There is no way I could get though it. I am so thankful I am married to such a brilliant man. I love you, Woo ❤

We still know Ronan is going to beat this but as I said before, he is going to do it his way. We will get this figured out but it is going to take a little bit of time. Nothing is set in stone and I loved it today when Fernanda said in her beautiful accent, “Honey, I love that you’re not married to one idea, your still dating!” I’ll never forget how her words made me feel today. I’ll never forget her sitting in the clinic with me and seeing her tears over something I had shown her that I carry with me everywhere I go…. her Christmas card picture with all of her 5 beautiful children on it. I feel like it brings me luck and it will help to guide me. It’s the little things that mean so much to me now. Whether it be the Claude necklace I always carry with me, my four leaf clover necklace that I never take off, Pam’s bracelet that she gave me that I also never take off, or Fernanda’s Christmas card. All of those things bring me peace and although they seem little and insignificant, they all mean the world to me.

Today was a long day to say the least. I have taken my sleepy medicine so I can actually sleep tonight. If I miss a dose, sleep does not happen. I’m o.k. with this. It won’t be forever, and I know how important it is for me to get some real sleep. My dreams are still intense and sometimes they are good, and sometimes they are bad. Working on tricking my mind into making my dreams as peaceful as possible.

Goodnight my sleepy friends. Goodnight Moon. Goodnight my sweet baby Ro, Liam, Quinn and Woo. Goodnight my Fernanda… I will meet you in my dreams for cocktails, on a beach, far away from all of this. I love you.

The dawn is breaking
A light shining through
You’re barely waking
And I’m tangled up in you

I’m open, you’re closed
Where I follow, you’ll go
I worry I won’t see your face
Light up again

Even the best fall down sometimes
Even the wrong words seem to rhyme
Out of the doubt that fills my mind
I somehow find
You and I collide

I’m quiet you know
You make a frist impression
I’ve found I’m scared to know I’m always on your mind

Even the best fall down sometimes
Even the stars refuse to shine
Out of the back you fall in time
I somehow find
You and I collide

Even the best fall down sometimes
Even the wrong words seem to ryhme
Out of the doubt that fills your mind
You finally find
You and I collide

You finally find
You and I collide
You finally find
You and I collide

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