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Thursday, February 20, 2014

A Brooke Mulford Update

As 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,
Amy

7 comments:

  1. Thanks for the update! Nice to hear about the miracles going on in Brooke's life! He gets all the praise!!! What a trooper she is!!!! Keep up the great fight Brooke!! We all love you!!!

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  2. Amy -- Have Brooke's doctors considered giving her the Neulasta prophylactically? My husband went through chemo for Hodgkins last year, and he ran into the low white count/infection problem early on. He was hospitalized twice with infections just a few weeks apart. The oncologist decided then to give him Neupogen for 4 days in a row beginning 5 days after each round of chemo. He also decided to remove the port, which he believed might have been the seat of the infections. It all worked -- no more infections (not even a cold), and my husband's white count stayed up. His veins took quite a beating, but they're improving. Just a thought. You and Brooke and your family are in my prayers every day. Stay strong.

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  3. tough girl, tougher mom

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  4. Queen girl, I am sure they have and are trying everything. But thanks for giving your medical advice to a team of the nations top doctors. What's your theories on the JFK conspiricy, Alzheimer's, aids and the moon landing?

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  5. 1:46 get a life you @hole.

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  6. 1:46
    Queen girl was not offering a layman's opinion but was sharing a creative medical strategy that helped her husband. She did not cough up a worthless furball of sarcasm. Until you're asked to audition for Letterman, consider using your scathingly brilliant wit elsewhere.

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  7. Thanks for the update on Brooke. She sure is a fighter ! Our church has been lifting her up in prayer. I love that she has a special furry friend too !

    I thought it was nice that queen girl was offering some advice that had worked for her husband. Way to go, Queen Girl!

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