Hello everyone... we have some news from Brooke's doctor to share, but the thing is,we don't know exactly what it all means... yet.
But, here is what we know right now:
When research is funded, miracles CAN happen. The research Brooke hasbenefitted from over the years has been:
Fall 2010 COG trial (COG and PARENT LED FOUNDATION FUNDING SUPPORT)
Summer 2011 Irino/Temo therapy
Fall 2011 Irino/Temo/Avastin trial (not sure how this was funded)
Fall 2011 Hu3F8 trial (PARENT LED FOUNDATION FUNDED)
Spring 2012 ICE therapy
Spring 2012 MIBG therapy trial (not sure how this was funded)
Summer/ Fall 2012 Molecular Guided therapy trial 1,2 (PARENT LED FOUNDATION FUNDING)
Spring/ Summer 2013 Molecular Guided therapy trial 3,4 (PARENT LED FOUNDATION FUNDING)
Fall 2013 DFMO trial (PARENT LED FOUNDATION FUNDING)
Spring/ Summer 2014 Molecular Guided therapy trial 5 (PARENT LED FOUNDATION FUNDING)
Fall 2014 CAR T Cell Trial (PARENT LED FOUNDATION FUNDING)
Just LOOK at that list.
MOST of the research Brooke has personally benefited from has been clinical research trials funding in part or FULLY by parent led foundations, INCLUDING Brooke's own foundation support to some of these trials. This list could be much more comprehensive and list all of the foundations behind these trials,and all of the parents and more importantly, the individual children that have fought cancer so bravely leading the way to pay for these trials that otherwise WOULD NOT HAVE EXISTED as options for Brooke if not for PARENT LED FOUNDATION FUNDING. Brooke’s path would be very, very different if this funding effort among foundations did not exist.
There are 3 key points here:
1. God opens many doors through compassion.
2. Miracles can and do happen when doors are opened.
3. Research leading to cures is not free and requires funding.
We know Brooke has experienced many miracles in her battle with stage IV cancer over the years, and we believe with all of our hearts may be in the midst of another incredible miracle thanks to PARENT LED FOUNDATION FUNDING for the trial she is currently on.
The Texas Children’s Cell and Gene Therapy team took samples of her blood last December. We were in Michigan at the time and they were overnighted to Houston. Her immunity had not been that high at the time with her therapy and we weren’t sure if there would be enough white cells for them to work with. Then the researchers isolated T cells from those blood samples. By February of this year, they requested more, so we sent in a few more vials of Brooke’s blood. Brooke’s T cells were isolated from the samples and frozen: ALIVE but frozen (which amazes us).
Because of strict FDA requirements, it took a long time before Brooke was next on the waiting list. Before Brooke, the researchers would thaw the patients frozen T cells, modify them to have a special GD2 antibody inside to make them sensitive to seeing the Neuroblastoma cancer whereas, before, the natural T cells did not see the cancer as a threat to the body. Then when the patient came, they would thaw the cells, and inject them into the patient.
They discovered this was not working well. With CD19 CAR T cell therapies they like to see expansion or modified Tcell multiplication happening in the body after they are infused into the patient. With the frozen cells they were followingpatients labs and seeing results like “10” of expansion happening, which is alow number.
They decided to change the plan and had to then wait on the FDA to re-approve the new“recipe” and they decided to instead of make the CAR T cells then freeze them,that they would make them and two weeks later when the batch was all ready,they would inject them directly into the patient… BUT before they would do this they would give the patient a low dose of chemo to knock back his or her own natural T cells which would hopefully allow the T cells to expand.
Brooke was originally going to be the first child to ever have this done – but she wasn’t. As many of our prayer warriors who follow her blog will recall, Brooke was almost ineligible for this trial. She was receiving hefty doses of steroid with every platelet transfusion and the doctors quickly informed us that steroids KILL T cells. Brooke was even on these steroids back when her blood sample was taken and shipped off last December and again in February to derive T cells from her blood. She had been on steroids for over a year to keep her body from having a bad anaphylactic (suffocation) reaction to platelet transfusions. The Texas CH team had basically said they were sorry for us she could not qualify. This did not sit well with us and we prayed heavily and decided to allow a few safe options to be tried with Brooke and lo and behold, they were successful. Brooke was able to demonstrate that she could have platelet transfusions safely without reactions when given a regiment of oral Tylenol, IV Benadryl and IV Zantac – no steroids required.
During the time Brooke was passed by, another child was the first to try the new regiment for this trial. The child went through the lymphodepletion chemo and fresh (not frozen) CAR T cells, and the doctors were thrilled when she had a small fever and expansion was seen into the hundreds! This was great and hopefulnews for the child. The week Brooke finally did get to begin the trial here, the other child’s scans came back stable.
The day Brooke got her CAR T cells, a few hours later she developed high fevers that lasted for days. Her heart rate was soaring. The inflammatory markers theywatch for in her blood were high (Ferritin, LDH and her CRP or C ReactiveProtein even went up to 28 which is a marker they watch for a Cytokine stormwhen T cells get busy attacking something foreign in the body).
The doctor called us today to tell us the first patients expanded around 10, then with added lymphodepletion (killing off the body’s natural T cell defenses temporarily) and fresh CAR T cells, expansion jumped into the hundreds. With other types of cancer that has had successful CD 19 generically modified T cells, expansion is in the thousands,or even ten-thousands.
His exact words were “Brooke is 100 fold that” and he told us Brooke’s blood work (as of yesterday) shows her CAR T cells have expanded to 20,000.
THIS IS A VERY GOOD SIGN in her body.
With T cell therapy, they first look for cytokine storm or a response similar (but perhaps even more intense) to what Brooke experienced with her fevers and heart rate although Brooke had NO pain. Next, they look for some signs of expansion or multiplication of the new T cells inside the body. Brooke’s expansion isoff the charts. Then, they watch forother clinical signs like pains or problems in the body, but ultimately thiscomes down to scans. Brooke still has 4more weeks until her scans.
Yep..4 more weeks before we will know.
We are PRAYING the new CAR T cells in her body are not only expanding and growing, but that they will be more than capable and eager to hunt and destroy any and all Neuroblastoma cancer cells lurking in her body and bone marrow. We HOPE and PRAY that this is Brooke’smiracle. We don’t know why Brooke’s CART cells are expanding like this when another child’s did not other than Brookehas a larger disease burden to start with and weaker bone marrow when they didthe lymphodepletion which brought her to rock bottom (again).
In FOUR more weeks, if her scans come back with clear improvement which we BELIEVE they may, she might be eligible for another batch of CAR T cells to be made fresh (not frozen) and delivered into her body but without the added lymphodepletion – BUT this would all be up to the FDA if it gets to that point. We have so SO SO much HOPE and we appreciate all of the continued prayers being lifted for Brooke and her medical team at this time.
If this is Brooke’s miracle, it can do nothing but lead to more miracles for more children as the researchers learn more about the nature of childhood cancer, which behaves so differently than adult cancers.
To put it into the words of one of Brooke’s favorite pastors from Sunday morning television, Joel Osteen:
"The scripture says in Philippians 1:6, 'He that began a good work in you will continue to perform until it’s complete.' The good news is that you’re not a finished product. God is still working on YOU."
Brooke... we believe God is still working on YOU and we continue to pray for your miracle!
Thank you to friends and family who have sent Brooke little notes and gifts in the mail (SHE LOVES MAIL) and for the anonymous grocery and gas cards for our family at this time. We feel so blessed and full of faith that God has led Brooke once again exactly to where he needs her to be. We continue to pray as well for her counts recovery as her body and bone marrow are still suffering from some long term late effects and we pray her bone marrow will recover and that her blood and platelet dependencies will dwindle. She is such a strong little girl with such a big heart and we hope that God will continue to use Brooke’s life and our lives to positively impact others around us in her battle. Please also keep Brooke’s friend Bailey in your prayers as her news was not so good this week. There are so manychildren fighting and we continue to focus our prayers on God’s mercy and goodness in their lives and stay on our hands and knees in gratitude and hopefor our little Brooke too.
To learn a little more science behind CAR T cell immunotherapy, you can visit this site: http://www.cancer.gov/cancertopics/research-updates/2013/CAR-T-Cells
Please keep praying with us!!