We have now let everyone know what has been happening with us over this last week on Facebook, but we figured there were some people who might like a little more detail.
Karlee has been having server stomach pains and fever about every 2 weeks for the past 3 months. She has been in the emergency ward at the Children’s Hospital twice. The first time they thought it was interception of the bowel that had corrected itself by the time we saw the surgeons. At that point they said there was a very, very strong possibility that it would never happen again. The next time it happened the doctor’s diagnosis was constipation (even though she was going regularly). We went down that road with BeneFiber and Lax-A-Day, but the episodes continued.
On Saturday July 31st she again had an episode that seemed to be particularly painful. We dropped Jennifer and Karlee off at the Emergency Department and got a doctor who was very interested in getting to the bottom of the issues. She was admitted to the hospital on Saturday and the tests started. We all spent the majority of the week at the hospital waiting with her. Being a long weekend they couldn’t bring in most of the specialists until Tuesday or Wednesday. We dealt with many teams (our Pediatricians, the GI team (gut doctors) and the oncology team). They went down many different paths including interception of the bowel, mono, infectious diseases, tumours and leukemia. We did find out that she is IgA deficient (I made several Sobey’s jokes at this point). Wednesday we met with the oncologist and they felt the chances of it being cancer were very low, but they were waiting for the results of the flow cytometry testing. On Thursday the regular doctors returned again and said the flow cyometry testing led them to believe it was leukemia and that further testing was required.
Friday morning Karlee was put under for a couple of tests. They did a bone marrow aspiration and a lumbar puncture (spinal tap). The procedure was completed in about 15 minutes without any incidents. Karlee took a little while to wake up from the aesthesia, but that could have been because she wasn’t in any pain (good thing). Once she got back up to her room she was jumping around in no time. About 3 o’clock the oncologist came back and delivered the bad news that we had been expecting. Karlee has Acute Lymphoblastic Leukemia.
They decided that we could go home for the weekend on a pass and can return to the oncology unit on Monday morning.
Monday they are going to do an assessment of Karlee to ensure she is well enough to start treatment and to give us information about the next 2 and a half years. Tuesday they will put a central line in so they can administer medicine and draw blood much easier. It will have a value just under her skin on her chest and they will access it with a topical. She will still be able to go swimming and have a bath and everything else. Tuesday they will also start treatment. Her first set of treatments will be 4 days and then we will hopefully be home again.
Once Karlee starts treatment her stomach pain should be gone within 1-2 weeks. They think that the pain was caused by the interception in the bowel and that the interception is caused by the lymph nodes in her bowel swelling. She should be in remission within the 1-2 week timeframe as well. Remission is considered less than 5% of the bone marrow cells being infected with the leukemia. The first 4 weeks of treatment we will be in and out of the hospital on a very regular basis. After the first 4 weeks we will have 5 months of weekly visits and treatments. During this time there will be many ups and downs that may require hospitalization. After our first 6 months we then move into the maintenance phase where she goes monthly for treatment for another 2 years.
It looks like we have a long road ahead of us, but at the same time the prognosis is very good. The permanent remission rate is 95% for childhood leukemia and Karlee has several factors in her favour being young and health at the start of treatment.
We would ask that if people are going to call they call before 9pm our time and don’t feel slighted if your call goes to voice mail. We might be screening calls, dealing with issues or at the hospital. We are also going to use the Internet and e-mail to keep everyone up to date on what is happening and where we are at with treatment. If you wish to be on the e-mail distribution list please reply to this e-mail or send us an e-mail to ronlewis@telusplanet.net if you are reading this on facebook.
Thank you all for your support and prayers
Ron, Jennifer, Ryley and Karlee
No comments:
Post a Comment