Brooke Mulford's Journal
Written Feb 19, 2014 5:22pmAs usual I am way overdue on an update! Last update was back in early January with scan results. Since then Dr. Maris and I have been trying to come up with a plan for treatment. I had wanted to go right from the trial in Boston to a T-cell trial at Texas Children's Hospital in Houston, TX however they are not going to be ready for Brooke until May/June at the earliest. She will need to go on another trial in the meantime but there just isn't a lot out there. The Foundation Medicine lab that her tumor biopsy was sent to was not able to get enough genetic info from the tumor to lead us in a treatment direction. The biopsy did let us know however that there is still very active Neuroblastoma cells in the tumor and that there is 50% involvement in the bone marrow at the site of the tumor. So we knew that we needed to start treatment quickly. Dr. Maris wanted to put her in a trial involving 2 standard chemos (Cyclophosphamide & Topotecan) combined with Celebrex and a drug called DFMO. Here is more info on the study if you would like to see the details http://www.nant.org/Patients_and_Families/N12-01.php Anyway, the trial wound up filling the last spot prior to Brooke getting in so then again "what should we do?". We decided to start the standard chemo involved in the above mentioned DFMO trial (Cyclo & Topo) and hope that a spot would open up soon. In the meantime another trial opened up that I really like (because it's another immunotherapy trial) called Tem1 but unfortunately that too filled before Brooke could get a spot! So on Feb 6th she started the standard chemo (inpatient because it was started at the end of the week). She seemed to tolerate it pretty well (only one pukey night on day 4 of 5 days). She finished the 5th chemo day was discharged on Mon Feb 10th. We returned to CHOP clinic the next day so she could get a Neulesta shot (to help with her counts) and get labs done. We drove back home to Salisbury with Brooke feeling great on Wed the 12th. She was so excited Wed night to go to school the next day however when she woke up on Thurs she was "just not feeling quite right" so I let her stay home. That night she spiked a fever of 103 which took us to PRMC ER and labs indicated that her ANC was only 0! Anything under 500 means that you are neutrapenic and very high risk of getting sick. An ANC of 0 means that she had essentially no immunity. We stayed the night in the ER due to the snow storm in PA Thurs night and first thing Fri morning she was transported to CHOP and admitted for a Neutrapenic Fever. Her Hemoglobin was only 7.5 on Fri so she needed a blood transfusion. Her fever remained 103 until late Sat night but finally broke over night. Sunday her platelets had dropped to 8 so she needed a platelet transfusion. She slept most of the day Sunday. Since Monday she has felt great! They generally would like the ANC to get to around 200 before they let you go home. This morning (Wed) it was 168 but her platelets have been steady dropping so we will see how they look tomorrow and hopefully they will be more stable and she can be discharged. She loves being here and is in no hurray to get out - haha- only Brooke!!!! She was just disappointed that she had to miss the Sock Hop that Salisbury Christian had Sat night to raise money for Brooke's medical expenses and in memory of Wayne Bailey who was a schoolmate of Brooke's that lost his battle with Neuroblastoma in 2010 soon after Brooke had finished treatment. They were able to work out a short Facetime call with Brooke over the big screen from her hospital bed but she was just not up to much more than a couple minutes. Thank you everyone at SCS!
So anyway, back to treatment, this week another spot on the DFMO trial opened up and they were able to grab it for Brooke! So she will start the trial in March. I will update soon (plan to anyway)!
With love and hope,
Written Jan 14, 2014 9:42pmLong day at CHOP (10 hours) but the news was good. Brooke's tumor remains stable and there are no new spots! She will have an MRI of her spine Thursday at CHOP and then at some point next week she will have a biopsy of the tumor. Thanks for all of the encouraging messages and prayers.
End of Study Scans
Written Jan 14, 2014 7:58amThe Clinical trial at Boston ended last week. We had a couple days at home in MD and then headed to NJ Friday after school. Saturday night we went to the Alex's Lemonade Stand Foundation Lemon Ball and Brooke got to present the "Stand of the Year" Award. She had to give a speech in front of over 800 people and did fabulous! http://youtu.be/--v93zmljVQ. After the live auction they asked guests to donate to a research grant in Brooke and her friend Charlotte's name. The goal was $50,000 but they raised over $100,000 in just a matter of minutes! It was so great seeing so many old friends and we had such a great time.
Yesterday Brooke had a bone marrow biopsy and her MIBG injection. She is still having some pain but doing better. Right now she is doing her MIBG scan and when that's done she will start drinking the contrast for her CT scan. Once all the testing is done we will head up to the ontology clinic to meet with Dr Maris to get the results and come up with a treatment plan. Please pray for stable or better scan results and clear bone marrow.