More tests and treatment starts

Greetings from Memphis,

Catie and M.E and Christine and I are all in Target House, Christine and I are just about to share a pizza, and M.E. and Catie are asleep at the moment, (more about that later).

Because the doctors are still skeptical of Catie’s diagnosis, (remember, this is the FIRST ATRT tumor with a primary site in the spine that St Jude’s has seen in the 18 years since they started classifying this type of tumor), they ran another round of CT scans to make sure that the tumor really did originate in the spine. She passed this test as well. So here is where we are as we begin treatment officially. There are 3 ways to battle this tumor, which is rare enough (less than 1 % of the reported brain tumors diagnosed in children each year….puts the number somewhere around 30 cases per year….all of them in the brain….until Catie). Step 1 is to surgically resect as much of the tumor as possible while still preserving as much healthy tissue as possible. Step 1 – complete – THANK YOU to Dr Mark Iantosca who did a great job getting the tumor and Catie seems to have full function. Step 2 is to use radiation therapy to “kill” any residual cells with a boosted dose of radiation at the primary site and a lower dose across the entire brain and spinal column, (reason for this is that anywhere that spinal fluid can get to could potentially be a spot for the cancer to re-emerge so, anyplace that spinal fluid touches, gets radiation. Step 3 is to use 3 very toxic chemotherapeutic drugs to destroy all rapidly producing cells in Catie’s body, this should eliminate any residual cancer cells, but also “kills” off white blood cells, red blood cells, and platelets, so in conjunction with the introduction of the chemo, they will do a harvest of the stem cells in Catie’s own bone marrow and then re-inject it into her after each round of chemo to allow her body to start to reproduce and replenish the blood cells depleted by the chemo. And that should be that. By next March-April, she should be home and cancer-free.

Today’s events:

M.E. and I were in the car on our way to Philadelphia airport by 2am, and she did great on the plane and waiting in terminals. For anyone that has not attempted to have a 2-yr old use a lavatory on a regional jet in light turbulence, I recommend the experience. It is far more exciting than changing a diaper in the back of a rental car while the agent is holding the rental agreement awaiting a signature. We met up with Catie and Christine at 9:30 at the main entrance of the St Jude’s Research Hospital. What a facility. My fervent prayer is that you never have to see this place because you have child that needs their care, but it is a testament to the vision and care of the Thomas family and the thousands of benefactors that such a facility exists and that it is as extensive and beautiful as it is. We then spent the day going through Catie’s scheduled appointments for the day, speech therapy, physical therapy, a meeting with Dr. Greg Armstrong, the primary physician, and finally, the first of 30 radiation treatments. Catie did great and had no issues during the treatment, and when she came out to us in the waiting room, I asked the technician if there were any side-effects after the first treatment, (nausea, and vomiting, flu-like symptoms). In other words, would Catie feel like Christine while pregnant. No, was the quick response, and if there is any symptoms like that, there are medications that can ameliorate the symptoms. We left the hospital, went to RiteAid to get some supplies for Target House, and then went to mass at St Mary’s, (feast of Our lady of Mt Carmel). During mass, Catie began to exhibit “flu-like symptoms” ……… hmmmmm. After mass, we got in the rental car and headed back to Target House (the initial plan was to go out to dinner, boy would that have been a mistake). We didn’t get a block from the church before the back seat was covered….(Check above symptoms and see if we have experienced them all yet). We got Catie back to the house and in bed, and she was quickly asleep, and then continued to wake up every hour on the hour to get sick all over again. At 9pm, Catie and I went back to St Jude’s (remember dear friends that we did not get any medicine when we left the hospital, because these symptoms do not occur after only one dose of radiation). By 10:30, after an injection into Catie’s newly installed central-line, she was feeling 100% and we had her in bed and sound asleep so that Christine and I could focus on us, and on getting the word out to all of you.

We love all of you for the care, concern, prayers, and support you continue to shower upon us. The cards continue to arrive both at home, and at Catie and Christine’s home away from home in Memphis, THANK YOU. They are the bridge that allows us to be together despite the distance. May this message find you at peace and in God’s hands.

Love and blessings,

Christine, Kevin, Maggie, Max, Catie, Mia, Molly, and M.E.

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