Monday, March 29, 2010

First Round of Antibodies

We started the next phase of Jordan's treatment, immunotherapy, last week. In order to prepare Jordan, we had to start Leukine shots the week before last. Leukine is a medication that increases Jordan's white blood cells to help make the antibody therapy more effective. Because Leukine is not FDA-approved for this use, we had to go through the appeal process with Craig's insurance. (What is FDA-approved for neuroblastoma? Umm, nothing...) While waiting for the appeal approval so we could fill the prescription, we had take Jordan to MSKCC each day to receive Leukine. Lots of driving and traffic for a shot that took all of 10 seconds to administer. Fortunately, all was in order by the weekend so I could start administering the shots at home.

On a side note, we ended up at MSKCC for a Leukine shot on Saint Patrick's Day. As the hospital is only five blocks from the parade route, we decided to take advantage of being in the city and swung by the parade for a bit. I think my expectations were a bit high (a mini-Thanksgiving day parade?!?), but Jordan seemed to enjoy the horses and the drums....but she was probably equally interested in the golden retriever sitting next to us wearing a green sequined bow tie.

Immunotherapy consists of a 30 minute infusion of the 3F8 antibody each day for one week. The medical team at MSKCC cautioned us many times about the intense pain associated with antibody therapy and I was hopeful they were somewhat overstating it...unfortunately they were not. Jordan's pain started five minutes into the infusion and the next twenty-five minutes seemed like an eternity. Jordan was red and sweating profusely, her stomach was rock hard, and she was screaming and writhing around in my was horrible and definitely the hardest thing I have seen Jordan endure. I remember feeling so sad and so angry...angry that this painful treatment is the best option for preventing relapse and sad that it is not always successful.

MSKCC has a team of nurses dedicated to 3F8 and they were right there with us, administering pain medications and antihistamines, monitoring Jordan's respiratory and heart rates. There was also a dance therapist, Suzi, to help Jordan and me cope...not by dancing (although that might have made a better story) but by physically helping me rock Jordan in my arms and sing to her. I'm not typically into the touchy-feely therapist thing but Suzi was so key in helping me care for Jordan.

Jordan received so much Dilaudid for her pain that she was completely knocked out the rest of the day. When we got home she would sit up and attempt to play with a toy for about 30 seconds and then put her head back in my lap.

Fortunately, the infusions the rest of the week were not quite as traumatic. They were still extremely painful for Jordan but the nurses said the first day is always the I knew what to expect. Jordan even started tolerating the pain medications a little better and was waking up by early evening, ready to play for a bit.

Despite the difficulties, I am thankful Jordan is able to have this treatment and grateful that we have this first cycle of antibodies completed. Jordan will continue with the antibody therapy every four weeks for three more cycles. After that the frequency decreases to every eight weeks. Antibody therapy continues for two years or until Jordan mounts an immune reaction to the antibodies (a HAMA response). We are praying that Jordan will be able to continue for a long, long time so that she is able to get the maximum benefit from this treatment.

Pictures from the St. Patrick's Day Parade


Kale said...

I can't imagine how tough it would be to endure just that one week. J is lucky to have such great parents who still find time to take her to fun events through all of the treatment. Finn is still praying for you every night!

Michelle said...

Holy cow. Those shots sound terrible. I am so sorry that Jordan has to feel that much pain. That sucks. She sounds like she is one tough cookie.
The pictures of the parade look fun! Jordan is beautiful, and I love her little sweater.
Thanks for the continued updates. We are continuing to pray for yall!

Dezzy Lou Where Are You said...

I am so thrilled for Jordan and of course for you, but it sounds like youre not quite out of the woods yet. I will continue to pray for your family and keep Jordan in my thoughts.

Allena said...

Sending prayers and {{{hugs}}} your way. The pictures were (as always) adorable. Jordan is so cute!! Let me know if you got her hat, I got an email that it was shipped. Hope it fits!

Maria Parlapiano RN IBCLC said...

That first treatment must have been so scary for you both. But staff sounds great and even though immunotherapy is super difficult,
I am so glad you are able to get the best cutting-edge therapy available at the best place.