I have tried to write this update for the past week.
Three times I have started it only to not be able to find the adequate words to finish it.
Monday we met with Brady’s oncologist and new CART and transplant doctor here in Columbus.
I honestly can’t tell you how much Chris and I appreciate them both. They are kind, caring, both so open minded to all the alternatives/additions to treatment we talked about. They are amazing. Plus, all they want is what is best for Brady.
And in the end two things are very clear.
The first is that our current hospital just doesn’t have the extensive experience in CART therapy in cases as hard as Brady’s. Most of that just comes with time, but since his case is so complex and this could be our last hope and option, we just don’t feel like we have any room for error in this next step.
Because of this, as long as our insurance approval comes through, we are moving Brady’s care to Children’s Hospital of Philadelphia for his CART therapy. Not only were they the first to perform this therapy on a pediatric patient, but they have since completed over 350 therapies in the past ten years. On top of that, there is a new trial that Brady may qualify for pending the results of his bone marrow biopsy tomorrow. And that trial is already showing longer lasting remissions than the original therapy showed.
The second was perfectly summed up by his oncologist’s words, “there is no roadmap for where we are going.”
There is no roadmap.
There is no standard.
There is no longer a protocol.
We all agreed, his doctors in Columbus and the team at CHOP, that a second transplant isn’t up for discussion. He barely survived the first, so it is unlikely that he could make it through a second in the weakened condition his body is now in. So that means our hope is held in the hands of Jesus and this new therapy.
It’s crazy that we are in this place. Making decisions like this. Talking about these things. Having these conversations with the boys. Knowing how close the end could ultimately be. Especially while in the past week we have gotten to do so many amazing things with family.
I mean, this crazy kid even completed two full soccer trainings this week and is 100% determined he is playing in this weekend’s games.
Today a picture was put on my heart driving home from dropping them at school.
After Jesus rose from the dead he showed himself to his disciples. He spent several weeks with them preforming miracles and continuing to teach.
But then, right before he ascends to heaven he spoke some his most famous words, “therefore go and make disciples of all nations, …”
I have to wonder if after Jesus left them if the disciples stood around and asked each other, “how? How are we going to do that? How can we go to the ends of the earth? How are we possibly going to accomplish this impossible task? How?”
But yet here I stand today. I stand here as the fruit of their labor. Their willingness to go. Their willingness to deny themselves to make sure others hear. Their willingness to sacrifice all they had so that we can see.
Sometimes the impossible isn’t understood right now.
Sometimes we never get our answer to how.
Sometimes we just have to go.
So here we go.
Here we go to a different, unfamiliar city with hopes of spreading the love and light of Jesus while we are there. We go with hopes that Brady’s case can bring back to Columbus further knowledge and understanding that could help all the other patients here. We go hoping for Brady to be one of the miracles that can live past six months.
We go unable to answer the question of how, but sure that this is what is next.
During one of the extremely hard conversations right after bedtime prayers Blake rested his head in his arms, breathed out long and hard, then said, “I don’t understand. How is Brady so strong and so normal right now if his cancer is so bad? Why can’t we just keep doing this treatment? Why can’t we keep him like this forever?”
I sat there rubbing his shoulder. I breathed out heavy too. “I know bud. It is so hard to understand the reality of where we are and that is a great question. It is actually one that we asked as well too.” I continued knowing that he needed the straight answer in that moment. “Blake, the thing is, this treatment he just did is only buying us weeks to months. It will only take a few times before his cancer outsmarts this treatment too and it comes back.”
“It just doesn’t seem fair.” Blake said so plainly. “Why would God gives us so many miracles to get here only to have this be the end? I just don’t think that is how his story ends, mom. I just don’t.” He was almost stern with his voice. “I think Brady’s story is just beginning. I just know it.”
I took some breaths. We have been very open and honest with each of the boys, but they still don’t know all that we do.
“I’ll pray that in agreement with you bud, I’ll definitely agree that may this only just be the beginning.”
He seemed content with that answer for a while. I thought he had drifted to sleep when through the silence one last question came out, “mom,” he asked waiting to see if I was still there, “how many kids with Brady’s mutation are still alive?”
I sat there for a second debating whether I should answer.
“Mom?” He said again.
“None, bud. No one is still alive.”
But I felt the need to quickly continue, “Blake, many of these 64 other cases were long ago. Way before the doctors had the knowledge and understanding that they have now. Way before many of the treatments Brady has gotten were even around. I know this is all scary, and I’m so sorry, but we will get through it. No matter what happens, we will get through it together.”
How can this be different?
We don’t know, so here we go.
Into the unknown, together.
Tonight I’m going to ask for some specific prayers if you would join us…
- Pray for Brady’s biopsy tomorrow. That every marker they need for him to qualify for the trial is met.
- Pray we will get insurance approval quickly to be able move forward
- Pray for his cancer to stay at bay so that he can make it to CART without needing any more treatments and he can enjoy so much of what is coming in the next few weeks
- Pray that all the oils and supplements we have implemented will be effective.
- Pray that the dietary changes we are making will remove all the inflammation from his body and restore all that has been ravaged from the transplant treatment.
- Pray that in the next seven weeks we will see Brady’s body morphed into a super-cancer fighting machine that can take these new cells and destroy what tries to attack him.
- Pray for wisdom to cover each doctor and nurse over Brady’s care.
- Pray for Brady. His body and his heart knowing what is ahead.
- Pray for Blake. He is carrying so much of this upon his own shoulders right now.
I know that is a lot. We are just navigating so much right now and would appreciate all the love, support, and prayers we can get.
For now we continue to make “bucket list” decisions trying to get to live out as much as we can together.
We are praying and seeking direction just like the disciples when Jesus said, “therefore go”. We are taking each word of the great commission to heart as we navigate how we can intentionally impact our path where we are headed.
So here is to charting a new, unpaved road for our family.
Way to battle Brady, way to battle.
Believing in Faith for mountains to be moved,