Clinic day

We had a great day at the clinic. Ronan’s levels are still o.k! They have dropped  a little, as to be expected, but they should be on the up and up by this weekend. Hoping we will be able to keep him home with no signs of fever to send us in to the hospital. Another weekend at home is what we are hoping for. We met with a new doctor today and I liked him a lot. He is part of the Oncology team… a bit younger than the other doctors we have seen (yes, married. I checked his ring finger, Sarah;). He seemed very knowledgable and passionate about what he is doing and the approach we are taking. He 110% believes in it. Woody interrogated him about everything from the treatments we are doing, to the statistics on it, to Slone- Kettering. He had an answer for everything. Our social worker, Marsha, was in the room and after the doctor left she told Woody she very impressed with the questions he was asking. That’s my brilliant hubby for you. I am so thankful for him and his amazing mind. I couldn’t have a better man standing by my side during all of this. We have decided that Woody is going to fly out to New York in the next few weeks to meet with the doctors at Sloan. A second opinion never hurt anyone. I finally heard back from Dr. Maris at CHOP. This is what he said:

Dear Ms. Thompson,

We are happy to provide a consultation, but this should be arranged through your medical team. Please know that there are national standards for approaching neuroblastoma, and it is very likely that Phoenix Children’s (which is a great place) is doing exactly what we would do here. Please feel free to have your physician contact myself or Dr. Mosse directly.

Sincerely,
jmm
John M. Maris, MD
Giulio D’Angio Chair in Neuroblastoma Research
Professor of Pediatrics
Chief, Division of Oncology
Director, Center for Childhood Cancer Research
Children’s Hospital of Philadelphia
University of Pennsylvania School of Medicine

I will be talking to our doctors to have them follow up with him. A third opinion would be great as well. We had such little time to make our decision and although in my gut I do feel like we made the right one… I feel like in order to be sure, we need to hear from some other experts.

Ronan is playing away and is glad to be home. We had a his broviac dressing change and it was not that bad. He is starting to trust Sharon, our nurse, a little more now. We are very excited to see my mom on Sunday. Ronan keeps telling me he wants her, NOW! He is very excited about her coming and can’t wait to see all the Star Wars things she is going to bring him:) I also wanted to tell everybody who has sent gifts and cards, thank you. We have started putting them away in Ronan’s closet so we are not so overwhelmed by the toys. We plan to let Ronan open them while we are in our 20-60 days of isolation during his stem cell transplant. All the new things to play with will help to pass the time in our “cell.”

I am going to try to get my little seal to nap now. He is full of such spunk and energy but really needs his rest. Wish me luck;)

5 thoughts on “Clinic day”

  1. You are an amazing woman, Maya! You’re doing absolutely everything just right for this little fighter! We’re all cheering for all 5 of you (and Kay and Charlie, too!).

  2. Hello. I just wanted to say that you are doing the right thing. I came to your site through the listserv. I am the mom of a neuroblastoma SURVIVOR. Yes, it does happen. My little girl is Ila Jean and she was diagnosed at 18 months. She is now 5 and just started kindergarten. I made the choice to go to Sloan too and I know they saved her life. You can go to her website and read her story. Email me and I’d be more than happy to talk to you. I’m here for you. My prayers are with you.

  3. Hi Maya,
    CHOP is the hospital that discovered and laid out the national standard of treatment for neuroblastoma. All other hospitals follow their lead in this area. They also have the largest team of doctors and research staff for neuroblastoma in the country. Like us, you are in a position where you need to make split second decisions that your childs life depends on…why not go to the authority on neuroblastoma? All of the hospitals you mention are great facilities, but for NB, CHOP is ground zero.
    Our thoughts and prayers are with you and your family!
    Fellow cancer gladiators,
    The Conti’s

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