Thursday, October 20, 2011

Sloan and Setbacks

After Mike's parents left, we went straight to New York City to visit Dr. Kushner at Memorial Sloan Kettering Cancer Center. Sloan Kettering does a different type of treatment after induction. They do not do stem cell rescue, but instead go straight on to antibody therapy for patients who have no evidence of disease (NED). The benefit of skipping the transplant is skipping the additional toxicity of the super high dose chemo. There are a lot of short and long term side effects that come with the type of chemo that goes along with stem cell, not to mention the four months of quarantine that follows because her immune system would be virtually non existent. Antibody therapy has short term side effects, including extreme pain and rashes, but there are no known long term side effects. We did a lot of research and reading and talking and asking about both options, as we knew this would be the biggest decision we made involving her treatment. 
We knew we had to visit Sloan ourselves to get a feel for the place and the staff to see if we would be comfortable going there for treatment. It's always scary to go to a new place where you don't know how things go, and who people are. We also wanted to see how Saoirse would respond to the environment, as it is important that she be happy during her treatments. I think she was the first of us to really respond to Sloan. They have an enormous play room, and kids running around everywhere. She was making friends before we were checked in. Everyone is really social - parents talk to each other in a social way, and introduce themselves very quickly, and the kids just walk up and say hi to one another. (On a side note, this happens at children's, but I feel like it took a lot longer for people to get chatty and start to jump into discussions about treatment. This perception could also be because we are more comfortable now talking about what is going on as we are deeper into treatment than we were when we started hanging around Jimmy Fund and Children's.) When we met with the doctor, we were pleasantly surprised with the real stance he took on treatment options. He of course feels strongly that the treatments being done at sloan are working, but he also was straight forward about Saoirse's probable response to antibody as well as stem cell. I think we were expecting a little more of a sales pitch (which some of the doctors at children's expected us to receive), but instead we got really straight forward answers to our questions. Dr. Kushner was not pushing his treatment on us, but rather sharing the details of his treatment to inform us so we could make our own decision. That in itself was impressive, but we also really liked the idea of sparing Saoirse the long term side effects of the chemotherapy. 
After our visit we did a lot of soul searching, more reading, some fun things to distract ourselves, and a lot of walking. Neither Mike nor I wanted to move hastily into this decision, and we wanted to be sure that we were completely at peace with the treatment we chose. Without spitting out a medical journal, and sparing everyone else the gory details and back and forths, we have decided to pursue treatment at Sloan. We feel that the Antibody therapy, with its fewer long term side effects and its objective to train the body to fight the NB with it's own power, is the best treatment for Saoirse at this time. So even with all the insurance paperwork and coordination we will have to do, not to mention the ridiculous amount of travel back and forth for two years, we are confident that this is the right path for our family, and more importantly, our little girl. 

After we informed Sloan of our decision, we set up an appointment for a new bone marrow biopsy, as they need four sample points, rather than the two that Children's performs. We returned to New York on Monday, and had the biopsy on Tuesday. We met with Dr. Kushner to plan out Saoirse's treatment schedule, and to discuss the protocol. We also made an appointment to see the radiation oncologist there to discus where to go with Saoirse's radiation. This was the first time we really got to discuss the radiation portion of her treatment plan, as we had not approached this at children's yet. It was interesting to learn how they do the radiation at Sloan, and to learn about the radiation process in general. We are pretty sure we will be doing Saoirse's radiation there, although we will still meet with the doctors here to discus their point of view as well. We returned home, hopefully and happy that we had made our decision and that we were on our way into the next phase of treatment. We planned on having some great fun over the next two weeks, and were getting ready for our long trip to New York at the end of the month. We were excited, and calm for the first time in weeks. 

This morning we received a call from Dr. Kushner in New York. Saoirse's more extensive bone marrow biopsy showed disease. We were devastated. We were even more saddened to find out that this meant additional chemo for Saoirse. She will have to undergo a round of higher dose chemo and another bone marrow biopsy before being able to start antibody therapy. As of tonight, we don't know what drugs she will receive, but we know that they will not be as toxic as the drugs for stem cell. We are hoping that one last dose will clear her marrow, and let us continue on the road we have chosen for her. Dr. Kushner did not seem to think that it was a "relapse" but rather a different result due to a different sampling of sites. Bone marrow biopsy's only take a small sample from one site, and are not a perfect process. I guess it's better to know that it is there, and to treat it appropriately, but we were really hoping to go smoothly into the next phase and to work with the schedule we had worked out at Sloan. But now, we will do a round of chemo at Children's next week, go to Sloan for another bone marrow in three weeks, and then (hopefully) get started on prepping for antibody and radiation. With all the positive results we have had so far, I guess there had to be a bump in the road sometime, so maybe this will be the only one, and it will be smooth sailing afterwards. Keeping our fingers crossed. Cancer Sucks!!!! 


  1. So sorry to hear about this setback...sending you positive energy that this will finally clear your baby of disease. Remaining very hopeful for you and in deep admiration of your strength and resolve...

  2. Stay positive and you guys will get through the bump! Keep the faith!!You guys can do this and get through to the other side. The strength you all have is amazing and inspiring!

  3. I am so sorry to hear this setback.. On the positive side of the note is that you know it is there now than later. So, keep the fingers crossed and pray that this will be the golden opportunity to clear everything out so that you can start the new chapter. Your girl is strong like you, mom and dad. She will fight through it and live the life happily every after, like all princess do! :)

  4. so sorry to hear about latest setback . you are in my thoughts and prayers . you and your family have made me realize what is important in life and i am trying not to get stressed out about the little things. you are great parents and have been blessed with an adorable little girl

  5. It is amazing how much a strong and positive attitude can affect your baby girl. She is so beautiful and so are you! I have been following your story and feel a glimmer of joy every time I see you and your daughter. Keep up your good spirits.

  6. Hi Kezia, you don't know me..I came across your story on msnbc. It caught my eye because my husband's family is from Danver/Beverly, we live in AZ. I am Hodgkin's Lymphoma survivor and I just learned of neuroblastoma myself when a family from my childs school son was diagnosed. I read Ronan's moms sacred story and immediately became what she calls her "busy bees" and helped start a fundraiser and currently working on another to help families like yours. I'm not sure of the entire medical path they went thru but do know that Dr. Kushner was one of their doctors too....I hope you don't mind I'm forwarding Maya Thompson your blog. You will continue to be in my prayers. I loved your quote...‎"You speak up because it could be your breast. You speak up because it could be your cervix, colon, ovaries, blood, or lungs. But when it could be your child, there is silence." we can say that as survivors! Gold MUST be the new Pink! Keep up the amazing attitude! Julie Blouin-AZ