Well, it has been six weeks since Avery's diagnosis of Acute Lymphoblastic Leukemia. While we were relieved to hear this diagnosis, we had no idea at the time of what was in store for our sweet Avery.
So, now that we are 8 days into the 2nd phase of treatment, called Consolidation, we've been doing some more research. This is a link to a page that outlines Avery's treatment plan, all of the drugs, treatments, and timing - feel free to check it out. http://www.cancer.gov/clinicaltrials/COG-AALL0331
Scroll down to the Outline section, then she is in Group I, (SR-low - ALL) and within that she is in Arm II (which includes all of Arm I treatments, plus a couple of additional items). That should make for a nice afternoon light read.
Basically, what it says is that even though this type of leukemia has about a 95% cure rate, Avery faces 2 solid years of chemo. The first 5 - 6 months will be the most intense, with weekly visits to the clinic for various treatments, procedures and medications, with what looks like a couple of short stays in the hospital. At the end of that, she is in for about 18 - 20 months of "maintenance". Even during this phase she will be in daily oral chemo meds and will still have regular procedures and treatments.
Anyway, I understand now why they don't tell you all of this right away, it's a lot to take in. It's really hard to swallow, the thought of our sweet girl going through so much for so long.
She has had a pretty good week overall, though. After today's intrathecal methotrexate (chemo delivered to her spinal fluid through a spinal tap) she came home and slept for almost 6 hours! That was a first for the reaction, but not the first time she's had this chemo.
As I have mentioned several times before on our caring bridge site, Avery still has some hair, for which we are grateful. This topic has generated an undesired amount of hubbub lately and honestly, I've run out of energy for that discussion. Let's just move ahead with the fact that six weeks into chemo she still has a fair amount of hair. For most people, she probably still looks pretty normal, but to those who know her, the loss is obvious. You can see her scalp, and it's very thin at her hair line. So we don't know if she will lose it all, we assume that she will, it just may take a bit longer. The reasons this is so difficult for us to deal with are (1) she's old enough to notice a difference, we've had to actually sit her down and talk to her about losing her hair, and watch her cry at the mention of it. (2) her hair is so much a part of who she is. While we get it that it will grow back, there's no guarantee that it will be the same and her hair was a unique and special part of who Avery is - those piles of bouncing ringlets of gold that prompted strangers to stop and comment and tell her how she looks like Shirley Temple - who knows if those will come back? and finally (3) her hair loss means the difference between looking normal and looking "sick" - she is already self conscious about people seeing her as it is, I know she will be even more uncomfortable once her hair is gone. Sure, she will adjust, as all of these brave little cancer warriors do, but it just stinks. That's it. No need to respond.
Either way, we adore her and she is such an amazing girl, as are her older sister and brother. They're all great kids and I really hate that they have to go through this, but then again, I wouldn't wish it on anyone else.
Thanks to all of our supporters, you guys rock! Much Love!
Saturday, May 31, 2008
Sunday, May 4, 2008
Avery Bravery
On April 1, 2008 I headed off to Sacramento with our local PTA to meet with legislators and policy makers about our state's dismal budget and what it means to public education. That afternoon I talked to Don, my husband, who said that our youngest daughter, Avery, was coming down with a cold. I came home the next night and she seemed to have a run-of-the-mill cold. She had a slight fever, which was gone by the next night, nothing unusual. By the following Monday, though, she was still not eating and had lost almost 2 pounds so I took her to the Dr. He looked her over and agreed that it looked like a regular cold, her ears were clear and her lungs were clear and even though she had lost a little weight, she was still in the 90% for her age.
The following afternoon - (April 8) we noticed that Avery's legs were COVERED in bruises. She usually has her share of bruises, she likes to wrestle with the kids, jump on the trampoline, and climb in and out of the car by herself. But this was not normal - she also had a few bruises around her elbows, a coulple of small ones on her lower back, and even a bruise on her face from bumping into Kolby, her big brother. I did some research online and thought she may have developed anemia as a result of the viral infection (not uncommon) so we bought some liquid vitamins with iron, offered her more meat to eat, laid off the milk and gave her more orange juice, which helps in absorbing iron. She perked up a little, but after a few more days we were still worried about her. So I started looking things up online and trying to find out the source of her excessive bruising, that's when things got scary.
After looking things up online we had narrowed it down to two scary things: 1. I.T.P. (Idiopathic Thrombocytopenic Purpura) which basically is when you have a viral infection and something goes haywire and makes your platelets stop working right. It causes excessive bruising, because your platelets are low and can't clot. OR 2. Leukemia. The more I read the more scared we got, she had so many of the symptoms for leukemia that we were really scared. She had the excessive bruising, fatigue, she was pale, she had purpura (small purple dots on her skin) on her neck and thighs, her belly was swollen (from an enlarged spleen & liver), and she had lymph nodes like marbles.
Tuesday, April 15th - We took Avery back to see our Dr. We told him what we had looked up and why we were so concerned. He said that he was leaning more towards ITP and ordered some labwork. We waited for what seemed like an eternity at the lab for them to draw her blood, and there was so much of it for all of the different tests he had ordered. Even though our Dr. had said that, on a scale of 1 - 10, his worry level was about 2 or 3, his body language told me something different. I got the call back from our Dr. as I was pulling in the parking lot of Bailey's school to pick her up. I was on the phone with Bailey and had to hang up on her to answer the phone call from the Dr. As soon as he spoke, I knew. He said that the results of the blood tests were "worrisome" and to take her to CHOC (Children's Hospital of Orange County) as soon as possible. He said that her platelets were only about 9000 (normal is at least 150,000), her white blood cells were high, and she had immature white blood cells (blasts). I didn't know it at the time, but that right there confirmed that she had leukemia.
We took her to CHOC right away to the E.R. where they drew more blood, confirmed that it looked like leukemia, and admitted our baby into the hospital. I was numb. I remember crying as I called Don to tell him what our Dr. said, and I remember him crumbling, but everything in between there and the first night in the hospital is a big blur. I vaguely recall her having a platelet transfusion and a blood transfusion during the first night. The next day, they did a bone marrow aspiration and biopsy and a spinal tap with a preventative dose of chemo to her spinal fluid. She was pitiful afterwards. It broke my heart. The next day, Thursday, April 17th was relatively uneventful, no procedures so she got to rest a little.
Friday, April 18th - surgery day. Avery had surgery to place an implanted catheter into her chest to replace her I.V. She had another platelet transfusion that morning, and another blood transfusion right before the surgery. She did not tolerate the blood transfusion well, and developed a mild fever as a result. When they started her anesthesia, she puked so she couldn't have the breathing mask, and had to have a breathing tube for the surgery. The surgery itself went well, but got off to a late start which was really difficult since she had not been allowed to eat or drink since midnight the night before. Since she had puked before the surgery and reacted to the blood transfusion, she had to be started on 2 separate anti-biotics in order to prevent pneumonia, which was fine while they were done through her I.V. Later that day, once they made sure that her "portocath" worked fine, they started her I.V. through that and took the one out of her arm! Woo Hoo!
The Conference - That same afternoon we had our conference with our oncologist and a team of people who would be helping to take care of our sweet Avery. I couldn't take notes and I didn't really ask a lot of questions, mostly I just sat and listened. They confirmed that Avery had what's called Acute Lymphoblastic Leukemia (ALL), and believe it or not, that was GOOD news. ALL is the most treatable and/or curable of the 4 types of leukemia. For children under 5 with ALL, CHOC has a 90 - 95% CURE rate! That's right, cure. Not remission - CURE. They were still doing some cytogenetics testing which would help them determine her long term treatment plan, and the results of that are probably a week or so away. Apparently, children under 5 respond best to treatment, and the fact that her spinal fluid was clear of leukemia cells was excellent news.
The following afternoon - (April 8) we noticed that Avery's legs were COVERED in bruises. She usually has her share of bruises, she likes to wrestle with the kids, jump on the trampoline, and climb in and out of the car by herself. But this was not normal - she also had a few bruises around her elbows, a coulple of small ones on her lower back, and even a bruise on her face from bumping into Kolby, her big brother. I did some research online and thought she may have developed anemia as a result of the viral infection (not uncommon) so we bought some liquid vitamins with iron, offered her more meat to eat, laid off the milk and gave her more orange juice, which helps in absorbing iron. She perked up a little, but after a few more days we were still worried about her. So I started looking things up online and trying to find out the source of her excessive bruising, that's when things got scary.
After looking things up online we had narrowed it down to two scary things: 1. I.T.P. (Idiopathic Thrombocytopenic Purpura) which basically is when you have a viral infection and something goes haywire and makes your platelets stop working right. It causes excessive bruising, because your platelets are low and can't clot. OR 2. Leukemia. The more I read the more scared we got, she had so many of the symptoms for leukemia that we were really scared. She had the excessive bruising, fatigue, she was pale, she had purpura (small purple dots on her skin) on her neck and thighs, her belly was swollen (from an enlarged spleen & liver), and she had lymph nodes like marbles.
Tuesday, April 15th - We took Avery back to see our Dr. We told him what we had looked up and why we were so concerned. He said that he was leaning more towards ITP and ordered some labwork. We waited for what seemed like an eternity at the lab for them to draw her blood, and there was so much of it for all of the different tests he had ordered. Even though our Dr. had said that, on a scale of 1 - 10, his worry level was about 2 or 3, his body language told me something different. I got the call back from our Dr. as I was pulling in the parking lot of Bailey's school to pick her up. I was on the phone with Bailey and had to hang up on her to answer the phone call from the Dr. As soon as he spoke, I knew. He said that the results of the blood tests were "worrisome" and to take her to CHOC (Children's Hospital of Orange County) as soon as possible. He said that her platelets were only about 9000 (normal is at least 150,000), her white blood cells were high, and she had immature white blood cells (blasts). I didn't know it at the time, but that right there confirmed that she had leukemia.
We took her to CHOC right away to the E.R. where they drew more blood, confirmed that it looked like leukemia, and admitted our baby into the hospital. I was numb. I remember crying as I called Don to tell him what our Dr. said, and I remember him crumbling, but everything in between there and the first night in the hospital is a big blur. I vaguely recall her having a platelet transfusion and a blood transfusion during the first night. The next day, they did a bone marrow aspiration and biopsy and a spinal tap with a preventative dose of chemo to her spinal fluid. She was pitiful afterwards. It broke my heart. The next day, Thursday, April 17th was relatively uneventful, no procedures so she got to rest a little.
Friday, April 18th - surgery day. Avery had surgery to place an implanted catheter into her chest to replace her I.V. She had another platelet transfusion that morning, and another blood transfusion right before the surgery. She did not tolerate the blood transfusion well, and developed a mild fever as a result. When they started her anesthesia, she puked so she couldn't have the breathing mask, and had to have a breathing tube for the surgery. The surgery itself went well, but got off to a late start which was really difficult since she had not been allowed to eat or drink since midnight the night before. Since she had puked before the surgery and reacted to the blood transfusion, she had to be started on 2 separate anti-biotics in order to prevent pneumonia, which was fine while they were done through her I.V. Later that day, once they made sure that her "portocath" worked fine, they started her I.V. through that and took the one out of her arm! Woo Hoo!
The Conference - That same afternoon we had our conference with our oncologist and a team of people who would be helping to take care of our sweet Avery. I couldn't take notes and I didn't really ask a lot of questions, mostly I just sat and listened. They confirmed that Avery had what's called Acute Lymphoblastic Leukemia (ALL), and believe it or not, that was GOOD news. ALL is the most treatable and/or curable of the 4 types of leukemia. For children under 5 with ALL, CHOC has a 90 - 95% CURE rate! That's right, cure. Not remission - CURE. They were still doing some cytogenetics testing which would help them determine her long term treatment plan, and the results of that are probably a week or so away. Apparently, children under 5 respond best to treatment, and the fact that her spinal fluid was clear of leukemia cells was excellent news.
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