January 24 was as good of a day as December 9 was bad. After six weeks of “Induction” we finally heard the word, “Remission.” We all cried, including the doctor.
Until then we knew things were bad for Harrison, but we didn’t know just how bad. One doctor described the entire medical team as “distraught” over Harrison’s case. When they discovered his form of ALL was not responding to the treatment, they saw little hope. A bone marrow transplant would have been the only shot at getting rid of this, and offered little chance of success.
I’m glad they didn’t tell us their level of concern; it was bad enough knowing what we knew.
Apparently two weeks ago, at the stage when 98% of ALL patients go into remission (defined at less than 5% lymphoblasts in the bone marrow), Harrison was at a full 30% blast count!! Typically he would have gone on to the transplant protocol right then.
But Dr. Weston refused to give up. He and a team of researchers at UNC, Johns Hopkins, Mayo Clinic, and St. Jude worked tirelessly to find some way forward. He believed that Harrison’s form of leukemia was due to a particular type of chromosome translocation. Of the eight doctors he consulted seven of them agreed that treating with this new drug Gleevec was the only hope (even if it was a “shot in the dark,” to use his words). As an aside, I am glad that “one” doctor is not Harrison’s primary oncologist! Thank God for Dr. Weston.
Long story short, the shot in the dark worked. When the lights came on, Harrison was in remission!
Remission does not mean cured, or cancer free. It means that the percentage of remaining leukemia cells (lymphoblasts) in his bone marrow is less than 5%. In fact, the preliminary count showed NO blasts at all. But THERE ARE STILL CANCER CELLS hiding in Harrison’s body, even if the doctors cannot find them. Were the treatment to stop now there would be a quick relapse of the disease. Despite being in remission, Harrison still has leukemia.
So the celebrating was sweet, but short.
Tuesday began the “Consolidation” phase of his three-plus year treatment. What is consolidation? It is a 56 day treatment designed to kill of the remaining leukemia cells. In includes weekly visits to the cancer clinic for chemo and blood tests to make sure there is no relapse. There will be two more phases before “Maintenance.” Here are the medications/chemos he is on for these two months.
Kepra – Anti-seizure med because of the stroke. Four giant horse pills each day.
Lacosomide – Anti-seizure med because of the stroke. Two pills each day.
Septra – Antibiotic as a prophylactic to infection. Four pills every Mon, Tue, Wed.
Arixtra – Blood-thinner due to the blood clots in his brain. A shot every morning.
Metholtrexate – Chemo injected into his spine and brain each week through a spinal tap at his Tuesday visit to the hospital.
Cytoxan – Chemo treatment on Tuesdays. About six and a half hours. Given at the hospital.
Cytarabine – Chemo treatment Ginger and I give him at home through his port Wed, Thur, Fri.
Zophran – Anti-nausea med he gets through his port before each of the chemo treatments and as needed by pill.
MP-6 – Two chemo pills he takes each night before bed.
Gleevec – Protein-inhibitor that is the “miracle drug” right now. Three pills each day.
No steroids, flumoxacole, or pepsid in this phase.
On Friday a nurse comes to our house to “de-access” Harrison. That means to remove the line going into his chest. To administer the drugs, Harrison has a “port catheter” implanted in his chest for the entire three years. Each week he has a three-quarter inch needle inserted through the skin into the port. A tube then connects to the needle. If you have ever seen an IV, you can picture that going into his chest rather than his arm. They will “re-access” him on Tuesday and leave the line in until next Friday. Then, he has two weeks off of that chemo.
We give praise to the Lord for Harrison’s healing, and are grateful for God’s provision of wonderful doctors, nurses, and researchers. We cannot say enough about Dr. Brent Weston. His tireless efforts on behalf of our son are what we pray for in a doctor.
I’ll do a better job of posting updates and explanations (daily, I hope). The last two weeks have been filled with such fear, I simply couldn’t find the motivation to write.
Thanks for continuing to pray, even when you didn’t have all the details. We know that God continues to hear your prayers. We’ve seen Psalm 126 right before our eyes.