Well first to explain the picture: Joncee decorated his Ash Wednesday Program from last night and Jayme and I think it perfectly depicts his perceptions of himself. We thought it was adorable. Even though it’s his other eye, I imagine he thinks everyone should perceive the world the way he does. It was inspiring to watch him in the batting cages taking hitting practice. He hasn’t missed a beat. He’s better with one eye than many I know with two!
Our doctor’s appointment today has revealed what we feared. Joncee is going to need a 6 month regimen of chemotherapy to attack these unknown cancer cells. Being he’s had 11 cycles of chemo already in his life, this is just more that we wanted. There is no testing available to locate where the cancer cells that have bypassed his eyes and into his bloodstream. The area where they escaped is a rich blood supply.
Our options are chemotherapy or to just wait and see if anything happens. Research shows there is about a 5-10% chance anything would happen, but if something did happen the results would potentially be extremely destructive. If we do chemotherapy, the chance of any reoccurrence at this point in studies are about 2-3% which increases our success to 97%. We like those odds, but remain hesitant in our spirits as Joncee has constantly been a unique case in every circumstance. (Leukemia within 6 months after initial treatment and then this at age 7 when eye cancer growth for Retinoblastoma usually ends at age 5) To not go with this treatment feels like playing roulette with 1 bullet in the chamber of a gun.
Jayme will be visiting a holistic doctor tomorrow who is a former MD and talk about diets and such to help our recovery and use these as a partnership toward healing. I worry about long-term effects of more chemo, but we can’t life in a “what if” world.
Jayme and I are moving in this direction together. It’s so hard making these types of decisions as no matter what you choose, you can easily second-guess yourself or set yourself up for heartache later on. We are at peace right now in moving this direction.
The regimen of chemo he will be receiving is nothing like what we had when he had Leukemia. That had us in the hospital for 4-6 weeks each time. This dosage is less extreme and will be outpatient so we can go home after each cycle that will happen every 28 days until late September. There is belief these cancer cells split and divide at a slow rate and so this plan of attack appears to be best.
Usually when we go through this we have to avoid everyone like crazy because of his blood counts, but this regimen will allow Joncee to be in school and live fairly normally. He will have a port inserted under his skin that can be accessed and will still allow him to play baseball as long as his counts are stable. This is really good news as it won’t disrupt the rhythm of his life too much and that is what we want for him. There is a good chance he won’t lose his hair either to draw more attention to himself as well.
We have an annual family trip we take with some of my hometown family in Idaho where we attend March Madness every year. We will be allowed to go on that trip and begin this journey at the end of March and he’ll have his fake eye put in by mid-April. It will be a final hurrah for us as we’ll need to stay close to home for 6 months while we are on this journey TOGETHER. Even though it’s only 4-5 days, it will be good for us. We have let our Foster Agency know today we can no longer care for Samuel the way he needs care and on March 12 we will learn if he is placed in a new home or granted guardianship by some of his family. Pray about that transition for this little life. We have to trust God’s provision for him as he has to transition again.
Saturday night I walked into Joncee’s room as he slept and listened to him breathe in and breathe out. I thought about the creation account in Genesis one that says, “there was evening and there was morning.” It reminded me about the fact that even while we sleep, God is at work and I asked God to allow each breath he took to be a healing agent over Joncee while he slept.
I then began to touch his head, arms, legs, feet, hands, face, and asked God that every time I touch my son, the healing hand of God and answers to the thousands of prayers being prayed on his behalf would be manifested in each touch as we journey together.
The phrases “I will heal and I will restore” have been running through my mind the last several days. I cling and hope it is the voice of God subtly speaking to my spirit so I’m clinging to the promise of those words as we begin what feels like another exhausting journey forward.
As we journey together, please help refer people to this blog or to facebook or through email as we are happy to tell you what we can, but this will be the best way to gather information. What used to feel like a day at a time may move us more to an hour at a time now as we will regularly be trekking to LA for blood draws and check-ups.
Continue to pray for us by name: Jayme, Keegan, Joncee, and Kaizlee that our lives would be continual reminders of God’s goodness to us and our hope is that whatever your faith journey looks like right now, you wouldn’t hesitate to investigate this guy name Jesus we center our lives upon.
As Jayme and I took communion together last night in our Ash Wednesday Service, we begged God to give us wisdom and clarity. We feel we have received that and now move forward with you all and we don’t believe for a second God has forsaken us. He hasn’t before and he won’t now.
You are loved.