Chemo Update

Today was a clinic day. A big clinic day! She had a scheduled lumbar puncture, chemo injection in the spine, and chemo thru her port. She for the first time ever REALLY, REALLY, threw a fit about going. She knew she couldn't eat prior to her visit and that always makes her mad, and rightly so. Today she refused to get dressed, said I was, "SO SO MEAN FOR MAKING HER GO TO CLINIC" and cried. I felt bad for her. It truly stinks and the older she is the more she "gets that!" We got there and she didn't want to talk to anyone. She just sat on my lap and fell asleep, which is strange because she does love seeing and chatting with her nurses. She had her LP and chemo, followed by a donut and juice. We chatted with the doctor and waited for her counts. Her counts were surprisingly low. Her ANC was 550 (normal on chemo is 1500) and her white count was 1.5 (normally on chemo it's 3.5 or 4). Dr. G took her off 2 of her nightly chemo pills for 2 weeks and wants to recheck her then. Too bad she couldn't have taken her off her NASTY grumpy steroid instead. Dr. G said that often after almost 2 years of chemotherapy the bone marrow just gets totally worn out and tired of fighting against these strong killer drugs and can sometimes slow down. We're trusting that a 2 week break from oral chemo will kick the bone marrow back in gear and get her counts back up.
The other thing that is EXTREMELY frustrating to me and certainly Cora is the side effects of this chemotherapy. Cora looks and acts like a normal little girl and sometimes I even forget what her little body has been through. With many types of cancer you go through chemo for 6-8 weeks or until the cancer appears to be gone and that's it. Most the time long term chemo effects are minimal. But ALL in children is treated with a standard protocol of 2 years and 2 months of chemo in little girls with B cell ALL. The GREAT news is that she only has 5 more treatments over 5 more months and that her prognosis after that is VERY promising. And I thank God every day for that!!! The BAD news is that she's experiencing some neuropathy (swelling of the nerves) which seems to be getting worse as a result of the drug Vincristine that she gets through her port once a month. Vincristine is a derivative of the poisonous Vinca plant that many of us have in our window boxes. Essentially we are allowing our daughter to have small doses of poison leaked into her blood and hoping and praying that it is doing it's job and killing the cancer cells. The problem is that the vincristine kills and affects other parts of the body. In Cora's case the vincristine is affecting the nerves in her legs. She's experiencing lots of tingling and leg pain not only right after chemo, but all the time. Her legs hurt, she stumbles more than the average 4 year old, and she can't climb and run as well as her peers. The other day she told me, "mommy it feels like someone is putting hot glue all over my foot, but they aren't." When I was explaining the leg pain to Dr. G she said it was common, but needed to be closely monitored. She said some kids describe it as a dragon breathing fire onto their legs and it is very painful. Dr. G said that normally when treatment ends this gradually goes away, but it can be long term or last for several years. She is going to conference with the other 2 oncologists about actually reducing Cora's dosage of vincristine for the next five months to try to prevent long term nerve damage. Cora has also complained of eye pain every once in awhile which can also be due to nerves. Please pray that her vision stays good and we can keep the neuropathy to a minimum. When I think about this lil girl being affected long term from this chemo it breaks my heart! I JUST WANT IT ALL TO GO AWAY AND BE OVER! She's done so well to this point, but it's so evident that her body is DONE with the drugs! Many doctors even think that the standard protocol for this type of ALL is an overkill. Sorry this is a gripey post, but I just hate that this is the only form of treatment that's successful! I'm convinced there's a better way out there and we will continue to do our part to help find it!!!