Update On Brooke Mulford 12-17-12

I wanted to start by thanking everyone for the outpouring of love, prayer, support and offers to make Brooke's dreams come true. To those who have offered to help: thank you so much and I am sorry that I have not gotten back to you yet...this week has been brutal and I have been focused on coming up with a plan- I will get back to everyone soon and we will start planning a lifetime of fun for Brooke! 

We headed to CHOP again this past Wed and I met with Dr. Weiser and Dr. Maris. There are really no good options. CHOP does things a little different from most hospitals with NB relapse. Instead of hitting the cancer hard again, they believe in starting with a clinical trial that Brooke should tolerate well and still have good quality of life. They look at it similar to a chess game and like to look at not just the move they are making now but looking 3 moves ahead as well. If they hit it hard now than in the future they have less options available. Brooke is now enrolled in a COG clinical trial called ADVL0918, A Phase I study of Temsirolimus in Combination with Irinotecan and Temozolomide. On this study, she will only have to go to CHOP one day a week for about 2-3 hours. She will start this Wed and will get one of the chemos through an IV and the other two orally. Phase I clinical trials are about testing safe levels of dosages of drugs and Brooke will be on the highest dose level of the experimental drug Temsirolimus - which part of me is glad about because I feel like that will increase the chance it will kill her tumor however it also means it increases the toxicity and will most likely have more of the side effects. She will start to lose her hair again in about 10-14 days after starting the chemo. Brooke is having a much tougher time with the thought of losing her hair this time around. She has done really well dealing with her relapse although she did have a pretty rough night earlier in the week. She was taking a bath and I think everything just pretty much hit her. She started crying about losing her hair and for the next couple hours had so many questions about what was going to happen with her treatment. It broke my heart. She is 4 years older this time around and is so much more aware of her disease and what can happen. I spoke to her doctor about her anxieties this time around and while we were there this week had her Child Life Specialist for the clinic and day hospital, Meghan, really focus on helping her deal with fears through medical play. Other than that one night Brooke has really been her usual joyful self that just loves Jesus, life and everyone she meets.

Brooke and I stayed at Grammy's house Wed night after our meeting at CHOP and had to be back at CHOP early the next morning for her to have a bone marrow biopsy to see if her cancer has spread to her bone marrow. I have not gotten the results back yet. She was so brave and did not shed a tear while getting the IV put in her hand and woke up from the GA just as happy as can be. She has had some pain at the two sites where they took her marrow from her hip bones but is mostly doing well. We headed back to Salisbury that night and we were able to catch most of the Cirque Christmas show at the Civic Center with my girlfriends. Friday, Brooke was asked to be the guest of honor at the Salisbury Zoo for the ribbon cutting for the new Wallaby exhibit - she even got to name one of the 2 Wallabies and named him Skipper. It was a wonderful afternoon.

Friday night her school had their Christmas Concert and we went to DQ afterwards with all her buddies. We have a big day today for soccer with a double header this morning and then a team party after the second game. Uncle Johnny came down for the Christmas concert last night and to see her games today and Aunt Johanna is heading down this morning to cheer her on as well. 

Well, I need to start getting ready for the day ahead. I was asked to share with everyone on this site and facebook that friends Kellie and Laurie have set up

A checking account at M&T bank in honor of Brooke! Brooke's Wish account is specifically going to be used to help Brooke fulfill her dreams!

Donations can be made at any M&T branch or mailed to:
Brooke's Wishes
26691 Passerdyke Ct
Eden, MD 21822

Checks made out to Brooke's Wishes!
Brooke also still has a Medical Gift Account through Bank of Delmarva that helps with medical/travel expenses.

Thank you everyone again for staying with us through Brooke's journey. Please continue to pray for a miracle and that we are all blessed with her for many years to come.

With much love and gratitude,

Amy