Update and a Direction

March 7, 2013

There is so much to update since the weekend. Julia began chemotherapy yesterday. As we posted, last Thursday we were looking at her being part of a Phase 1 clinical trial. This was one of the options that the Solid Tumor Board at CHOP had discussed with us. The reason that this option seems like a logical choice is because it included new chemo agents that Julia had not yet been given. The scary part is that this is a Phase 1 trial – Phase 1 trials primarily see if the body can handle the toxicity levels of the drugs. The doctors were looking to see if Julia would qualify for the trial by reaching out to the hospital where it was coming from – during the meeting they mentioned Children’s National in DC and Dr. Jeffrey Dome.

Very early Friday morning, as I thought through all the options, I remembered that a colleague and friend from work had mentioned some time ago that his sister was the Chief of Pediatric Oncology at the National Cancer Institute. I sent an email to Tom and he quickly responded and got me in touch with his sister, Dr. Crystal Mackall. (THANK YOU TOM!!) Dr. Mackall quickly responded asking for a synopsis of Julia’s diagnoses and treatments and mentioning that we may want to speak with Dr. Jeffrey Dome.

We received the synopsis from Julia’s doctor at the hospital later Friday night and I sent it over to Dr. Mackall shortly after I received it, not expecting to hear anything until Monday. Late Saturday afternoon, right before Julia was discharged from the hospital, Dr. Mackall responded. She said that she had an email exchange with Dr. Dome and he thought there may be other options before moving into a truly investigational study. Dr. Dome was willing to see Julia in consultation. We quickly emailed Dr. Dome and Julia’s doctors hoping that we could get everyone talking – getting the greatest minds in the world talking about Julia and searching for the best course to take. We just didn’t want to leave any stone unturned.

Monday, Julia’s lung needed to be drained and not being that confident with the process, I called the King of Prussia clinic and the wonderful nurses said to come down and they would assist. When I arrived, I had an email from Dr. Dome saying that his scheduler would be reach out to us to set up an appointment. He also explained that he was going out of town and would not be back in the office for another week. Knowing that the tumor is growing rapidly, I asked if we should begin any treatment prior to seeing him to at least try to stop the progression. We couldn’t bear the thought of waiting another week before we did anything! Dr. Dome responded that it was best to wait, but also asked about the size and location of the tumor.

I spoke with Julia’s primary oncologist, Dr. Julie Stern, about everything that had transpired with the email exchanges. Dr. Stern was just amazing! Always Julia’s advocate, she called Dr. Dome so that he would get more insight into Julia’s case and she could find out what his thoughts were.

Later that evening, Dr. Stern called us to review her conversation with Dr. Dome and subsequent discussions with Dr. Balis and Dr. Womer at CHOP. Like I said, the best minds in the world.

Dr. Dome suggested using the agent Topotecan. There was a recent Phase II study that closed and shows some promise. They saw an improvement in 50% of the children that used this chemo with the common factor for those in the study that improved had not had chemotherapy in the last year. Julia’s last chemo was one year ago. We know that there are a small number of children in this study, but at least there are some numbers to go on – with a Phase I study, there are no results. Also, if this doesn’t work, we can take the next step and try another clinical trial. However, we lose the opportunity with Topotecan if we try another agent first. The down side is we will only be using one agent and they do like to see a combination of drugs so that we attack the cancer in different ways.

We decided to move forward with the Topotecan. Julia started treatment yesterday. She will get her chemotherapy via IV for now. There will be 2 weeks of daily chemo and then 1 week of rest. We know Julia’s counts will drop drastically and there is a very good chance she will get neutropenia requiring hospitalization. After six weeks of treatment, she will have scans to see if the Topotecan is having any effect on the tumor. Julia is wiped out from the first two days. Last night, she woke up several times through the night with some belly pain. We also had an issue with her IV and a new one had to be placed today. It was painful, requiring several sticks, but once Julia found her “lucky vein” for the nurses, she was able to relax while the chemo was delivered. She has been very tired after each of the infusions and spends most of the evening sleeping. Tonight, she ate almost two bagels with butter and we saw that beautiful smile for the first time in days.

Perhaps it was divine intervention that we now have Dr. Dome on “Julia’s team”, perhaps it was just coincidence, but we do know that we have the best of the best trying to cure Julia’s cancer. We just hope and pray that the Topotecan works and we have a miracle.

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Julia's Grace Foundation  |  PO Box 1081, Royersford, Pennsylvania 19468