A little info...
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GETTING THE DIAGNOSIS
Edward was traveling with his family (out of country) in Canada, when he was too ill to leave the hotel room. We thought he had stopped eating so much and the slight fever was from his new front teeth coming in. They were very sore and swollen. We took him to a clinic when his ear started to ache and became painful. The doctor said he had an ear infection and prescribed antibiotics. After two days of taking the medicine, he wasn't getting better and had drainage and blood from his ear. On April 2, 2014, we took him to a different clinic. The doctor there sent Edward to the hospital right away. About two hours later, the doctor came to us and said "Well, we have his blood work, his counts are low, it looks like leukemia, we need to....." I have no idea what he said next. Our first thoughts were surely he was wrong. However, our Edward bear was on a plane with medical staff, without any of us, heading for Alberta Children's Hospital in Calgary, Canada, about 11pm. We drove the almost 5 hours to be with him.
On April 3rd, 2014, we got Edward's diagnosis of B-type Acute Lymphoblastic Leukemia (ALL).
TREATMENT THE FIRST MONTH
Edward was admitted to the hospital on April 3rd, 2014. Once they had confirmed the diagnosis of ALL, he had surgery on April 5th to place a "port" device into his chest muscle with a line that runs directly into his heart. This cuts down on how many needles he has to have for all the blood work, chemo, transfusions and tests that will happen. It was a shock when the surgeon came out after surgery and said "It went well, we added a bit of extra line into the heart since he will grow over the next year and how are you going to pay us?" The shock wasn’t the bill; it was because we were slowly coming to realize that Edward would be going through treatment for a long time. Two days later he had a bone marrow biopsy, spinal tap and his first chemo injection into his spinal canal.
Edward’s started treatment (Induction phase) on April 8th, 2014. It lasts 29 days. During this time, he will have: 3 doses of chemo injected into directly into his spinal canal, 5 doses of IV chemo and DEX (a steroid) twice every day. He’s had 4 blood transfusions and 5 platelet transfusions so far. He has a selection of other medications he takes to offset the side effects of the chemo and DEX.
Edward was in the hospital from April 3 to April 15. Most of that time he was in isolation. Then he was treated as an outpatient for 9 days, spending 4 of those days in the clinic. On April 25th he was re-admitted with severe pain in his legs (he could not walk) which required morphine, a fever and a staph infection. The standard is to give 10 days of IV antibiotics for a staph infection, which can be difficult to get rid of. They are doing tests on his heart because the staph bacterium likes to cling to heart valves. It also likes to stick to plastic like the tube that was put into his heart and connected to his port device. If they can't get rid of the infection, the device will have to be surgically removed and Edward will have to get his treatments in his little arms. We pray that they can clear the infection to give him the best chance.
His hair began to fall out about day 17.
ONGOING TREATMENT
After the very intensive phase one treatment, he will have to endure an additional 7 months of intensive treatment where he will have very little if any immune system. His treatments will be combinations of IV chemo, oral chemo, chemo spinal injections, steroid doses, and all of the accompanying drugs to counteract all the different side effects.
Edward’s total treatment will take over three years, during which he will continue to receive chemo treatments. Any infection during his treatment will land him back in the hospital since he has no immune system with which to fight.
We have been told that the chemo in the spine will affect his brain growth and bone strength. The effects of the chemo on his brain will become more noticeable in years to come. Many children who survive ALL will be special needs children in school, with various learning difficulties. Since leukemia is a cancer of the blood, which is created in the bone marrow, the drugs to fight the disease will also weaken his bone structure.
Since Edward was diagnosed and started treatment in Canada, we will need to wait until he is stable enough to travel back to the States, where we have family and friends to lean on for support.
This will be a long road. We are hopeful for his recovery because 90% of children fighting this disease survive.
