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DFMO Cycle 1, Day 1

Caden took his first dose of DFMO this morning! I didn't post anything sooner because I felt kind of jinxed after the past two attempts to start this trial. We learned on Thursday that the bone marrow result, although inconclusive, was permissible for the trial. Yesterday, we made the drive to Salt Lake City (about 7 hours without stops) and acclimated ourselves with a new hospital, Primary Children's. Caden had labs and a hearing test, as required by the trial. All of the staff was wonderful and Caden won them over quickly. Caden did his blood draw without any crying, not even a whimper. He only wanted to look at pictures of the Blue Angels on my phone. That was easy! We were so proud of him.

This morning, we met his new doctor for this trial, Dr. Mark Fluchel. He did his residency with Dr. Park in Seattle and was great with Caden. Caden even drew him a picture of the two of them, complete with Dr. Fluchel's ID badge. The picture was then affixed to the front of his chart. :) We went over the basics of Caden's treatment history and the benefits, risks, and logistics of the trial.

So, DFMO stands for Difluromethylornithine or eflornithine HCl. Yep, we'll be calling it DFMO. This drug is believed to disrupt a pathway used by neuroblastoma cells to proliferate. More specifically, it inhibits Ornithine decarboxylase (ODC) which is an enzyme that helps make polyamines in the body. Neuroblastoma uses polyamines to grow. So, the theory is that tumor growth could be suppressed and the residual, microscopic disease dies or matures to benign cells. Lab studies have also found that this drug may increase the body's production of p53, a protein important in suppressing tumors.

Caden will be taking two tablets twice a day. He's never been able to swallow pills, so last week, he started practicing swallowing small candies whole. Worked his way up to a pine nut. Today, when we got the pills, we found they are about the size of an M&M and he was able to swallow it just fine! So thankful for these little successes that make our lives easier. Caden's such a good sport when it comes to these new things.

So these polyamines the drug will be inhibiting in his body are also found in food. In concept, the polyamines in food could negate some of the effectiveness of the drug. We were given a list of foods that are high in polyamines. Dr. Fluchel did emphasize that this is just a recommendation and not to go crazy counting polyamines and eliminating certain foods. Wow, he knows me so well already! :). Fortunately, the foods that are the highest in polyamines (orange juice, grapefruit juice, fresh tomatoes), he's not a huge fan of anyways. Caden had a good laugh when I read "beer" on the list, saying "good thing, cause I can't drink that anyways!". The most challenging foods for Caden will be somewhat limiting his intake of bananas, corn, cheese, potatoes, peas, nuts, rice, and noodles. Even spinach and broccoli (which he likes) are on the list!

This treatment is considered a good one at this point because the side effect profile is quite low. Most kids do not experience any negative side effects. Besides the standard lab work, the thing we will be monitoring closely is his hearing. Mostly at higher doses, reversible hearing loss has occurred. For a kid with existing hearing loss, this could be problematic, so he will have evaluations every three months.

If everything goes smoothly, he could be on this trial for about two years (27 cycles at 28 days each). He will have scans in Seattle and a trial evaluation in Salt Lake City every three cycles. The next set will be in October - the longest we've ever gone between scans. For the in between cycles, he will be evaluated by Dr. Hodgson in Bozeman. If they find neuroblastoma during any of the scans, he will not be eligible to continue on this trial and won't be able to get back on it.

This trial is through the NMTRC (Neuroblastoma Medulloblastoma Translational Research Consortium) chaired by Dr. Giselle Sholler. She is the mastermind behind a handful of the trials available to refractory or relapsed neuroblastoma patients. Her work is funded in large part by foundations (pediatric cancer research gets very, very little funding from the National Cancer Institute, the American Cancer Society, or pharmaceuticals). One of the foundations supporting the NMTRC is Beat NB, the organization I am fundraising and running the Falmouth Road Race for in less than a month. Dr. Sholler herself will be running, too! I am so happy to have the opportunity to go to Cape Cod and support the trial Caden is on right now! The kids and I will be spending two weeks in Massachusetts visiting family and friends we have not seen since before Caden got sick. Camryn was only 8 weeks old last time we were there. Their great-grandparents are going to see a big change! A few weeks later, I hope to run my first half marathon, most definitely my greatest athletic challenge to date. If you'd like to donate, you can do so online at: or mail a check to: Beat NB Cancer Foundation, 76 Park Street, Braintree, MA 02184. A great big thank you to everyone that has donated so far! I'm almost to my goal! If you do (or already have) mailed a check, please send me a quick note (pshrauger[at]gmail[dot]com) so I can count your donation toward my goal and say thank you.

Speaking of thank yous, we want to give special thank yous to Nurse Ryan in Bozeman for working extra hard yesterday to make sure one of Caden's lab results was ready in time for his appointment today, Holly for finding us a wonderful babysitter in Salt Lake City (Camryn was not allowed in the cancer clinic), and the Grabbes for always taking our dog in with little, uncertain notice.

We made it back home late, but we hope this is the start of a calmer, more normal period. The rollercoaster has been exhausting. But hope is an incredible thing.

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Cheryl Hanington
By Cheryl Hanington
Amen... Praying for a MUCH smoother ride from here on in for all of you.
susan backstrom
By susan backstrom
yeah praying for 100% healing and response... you got this caden~!!!! fc
Judy Hensley
By Judy Hensley
So happy that Caden got to start the trial and praying it will be 100%
Successful! So proud of you Caden for all those things you do so well, especially the no tears blood draw and swallowing those BIG pills! you rock!
Erika Tetreault
By Erika Tetreault
So happy to hear that Caden was accepted into this trial. My continued prayers, positive thoughts and well wishes are with you all. Best of luck in the Falmouth Road Race and the half marathon! Hope you enjoy your time in MA with your family.
Diane Gemmell
By Bill and Diane Gemmell
We are so glad that Caden got into this study! Our continued prayers and good wishes will be with you all throughout! Your trip to Mass. should be a lot of fun. The Great Grandparents must be so excited! Good luck with your run! Beat NB Cancer! Caden, you've got this!!!
Diana Pedersen
By Love, Grammy (Mom)
Way to go, Caden! Can't wait to see you in MA ... now that I have a list of foods to avoid during your visit, I'll have to start some creative menu planning!