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Brooke’s Story

1/5/09, Brooke was diagnosed at Children’s Hospital of Philadelphia (CHOP) with stage IV high risk Neuroblastoma, a very aggressive pediatric cancer.  Her cancer started in her adrenal gland & spread through her entire body (every single bone in her body from her skull down & 80-90% of her bone marrow was packed with cancer).  Her prognosis was not good.  She went on to endure 6 rounds of chemotherapy, surgery to remove her right adrenal gland, 2 stem cell transplants(lethally high doses of chemotherapy followed by stem cell rescues), 12 rounds of radiation to her skull, abdominal area & both femurs & a 6 month immunotherapy clinical trial ch.14.18. Brooke’s scans on 9/10/09 showed that she was NED (No Evidence of Disease)!  Brooke finished treatment in April 2010. 

Asa result of her treatments, Brooke has high frequency hearing loss and now wears hearing aids, has Thyroid disease from her scans and Horner’s Syndrome.

NB has a very high chance of relapse & potentially serious late effects from the toxic treatments so she was being monitored closely & having scans done every 6 months.  12/5/12 she relapsed with a tumor on her spine (L4).   Brooke is now back in treatment & participating in a phase 1 clinical trial at CHOP.  Statistics are abysmal…but Brooke is a fighter & I pray that we can keep her disease stable or better & hope that a cure is found in time for my baby.

Update:  12/5/12 Brooke relapsed with a small tumor on L4 of her spine.  It was picked up on her routine 6 month scans.  She participated in a clinical trial at CHOP for 5 months involving Irinotecan, Temodar and the trial drug Temsirolimous.  She remained stable on this trial but it also made her very sick with terrible migraines.  From July 8th-Dec 30th she participated in a clinical trial at Boston Children's/ Dana-Farber Cancer Institute involving a Dendritic Cell Vaccine.  Brooke did great on this trial and had very little side effects, wonderful quality of life and her disease continued to be stable.  As much as I wish she could stay on this trial longer the protocol is only for 6 cycles so we will be off in search of a new trial (most likely heading to Texas Children's Hospital in Houston for our next adventure). 

 

Latest Journal Update

Heartbroken

Brookes MIBG Thurs showed massive progression through her entire body.  The Neuroblastoma has spread everywhere (skull, both shoulders, spine, hips, pelvis, both femurs and possibly her liver).  She had additional CT scans last night and a bone marrow biopsy this morning.  Her morphine was increased this afternoon and that has helped a lot with the pain. My heart is completely breaking.  Thank you everyone for all your texts, emails, Facebook messages and voicemails.  Your love, prayers, words of encouragement and support mean so much to me I'm not answering phone calls right now (it's just too difficult to talk right now) and I'm doing my best to read every message and so is Brooke.  Just please understand if we don't respond to each one.  Please continue to pray for a miracle and ask your churches and friends and family to consider doing so as well.  I forgot to mention in Wednesdays journal entry that we moved the week of Christmas. If you would like to send Brooke a card our new address is:
Brooke Mulford
1099 Corbridge CT
Voorhees, NJ 08043
 Thank you so much
Amy
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Comments

58 Comments

Michele DaTorre
By Michele DaTorre
Amy, Brooke is always in our prayers, but I will continue to pray for the miracle. Brooke is a tough little girl and her mother is extremely tough. Stay strong!
joanie baker
By Joanie Hoey
Thank You for the updates Amy! Praying for both of you Much Love and Hugs
Kristen Hyland
By Kristen Hyland — last edited
Please pray for this precious little girl. Please Lord we ask that you heal and hope that you come into her and take away illness, pain, or any fears associated with her cancer.

Lord we beg you to spare this child any suffering. Please Lord guide this family let them feel your amazing power and grace, bestow upon them the love, faith and guidance they will need to conquer these trials, we praise you Lord.

In Jesus name Amen
Liz MacFarlane
By Liz MacFarlane
Amy and Brooke you will continue to be in our prayers. Your strength has been inspirational. May God give you peace.
gail fogarty
By Gail Fogarty
Amy, I've always enjoyed reading your medical updates or fun adventures with Brooke when you shared them on this site.I'm note on Facebook, so it was great to hear what was going on with you guys without bugging Jean to find out what was.This time I wish this posting didn't exist.May the Good Doctors come up with a solution to this latest problem and ease both your pain.Know Brooke every one is wishing you well.Your strength, faith and love have gotten you thru a lot together.Hang in there! Praying for your miracle to come quickly..
EVA VAYO
By Eva Vayo
You are both in my prayers. Hoping God's richest blessings & healing will come your way!
Jane McClung
By Jane McClung
We've been praying for you both.
John Breda
By John Breda
Praying and believing for a working of miracles, gifts of healing, and special faith. Psalms 107:20.
Pamela Hoffman
By Pamela M. Hoffman
Brooke, I was lucky enough to meet you a few years ago during a children's Halloween party at the Wicomico Yacht Club that I took my granddaughters to. I was selected to be one of the people to sit in a chair while the kids made a mummy out of me by wrapping toilet paper around and around. You were doing most of the wrapping for your team and started getting it tighter and tighter around my neck. Your Mom said, "Not so tight, Brooke." It was so funny and all I could do was laugh.
I have since been following your Mom's posts to see how you were progressing. You are such a strong girl, Brooke. I know it is tough, but just keep hanging in there. So many people are thinking about you and praying for you. I will continue to keep you and your Mom in my thoughts and prayers. Hugs to you, sweet girl.
Kelly Niemczyk
By
Brooke & Amy,
The two of you have to be the strongest, most amazing women I have ever had the honor of meeting. We met a couple of years ago at CHOP in Philadelphia where my son was going for treatments for liver cancer. Ever since we met you have been constantly on mine and my husbands mind and in our hearts and prayers. May God watch over you both and help with both the pain of Brooke's body and the pain in your hearts that you both and your families must all be feeling.
I know that our hearts are hurting. Continue to be strong and know that you are not alone. You have touched the hearts of many who would be honored to do anything they could to help you at these moments of need. Keep believing in God and prayer. Be strong, you are both an inspiration to anyone you have ever met.
With Love Always,
Kelly, Joe & Nate Niemczyk from N.J.