JESSE OWENS! BRUCE JENNER! ---- MICKEY MOUSE?????
300 Days to Go!
Wish us luck, we are loading up the car and getting ready for our Disney trip! I keep reminding myself, as long as I don’t forget her chemo, there’s nothing we can’t buy at Wal-Mart, right? (Repeated over and over and over to myself, in an attempt **not** to pack the entire house, which I have a tendency to do, as Blaine can unhappily attest!)
Anyway! In mentioning to friends and co-workers recently that we were fixing to take Kendrie on her Wish Trip, Blaine and I noticed a few interesting reactions. Friends were, of course, happy for us and wished us well. Those who don’t know us as well either seemed startled, as they assumed this must mean Kendrie had taken a turn for the worse, or they seemed perplexed that we were entitled to a trip --- after all, isn’t that for really, really sick kids?? Terminal kids? As those of you who follow this journal already know, I was also wondering if we were entitled and feeling a tad guilty for taking a Wish Trip. Is this “appropriate” for Kendrie, doing as well as she is, to be the recipient of such a kind gift?
Wednesday morning, I had one of those periodic parent-teacher meetings with Kendrie’s Pre-K teacher. Yes, she’s brilliant, yes, she’s a leader, yes, she’s the greatest thing since sliced bread (Kendrie, not the teacher) …. we already knew all that. Her teacher said absolutely no problem with her missing a week of school for a Disney trip, but seemed surprised it was a Wish Trip. Then, when I mentioned she would still be gone the following Monday for her chemo treatment in Atlanta, the teacher …. the one who has been with her all year …. said, “Still? She’s still getting chemo?? Even with all that hair?”
I was completely taken aback by that …. has she not been paying attention??? Where has she been? Of course, the assistant teacher is actually the one who works more with Kendrie, has taken such an interest in her, and is the one I warn every month when Kendrie is on steroids -- you know, when it’s important to notify the school staff of the upgraded tsunami-storm alert warning.
So I got to thinking …. do people not realize she is still on chemo because she looks good and feels pretty good and plays hard and does well in school? Does the treatment for leukemia go on so *bleeping* long that people outside close friends and family just forget about it?
For the record, here is a glimpse into Kendrie’s current treatment plan:
She is on 28-day repeating cycles of chemo.
Every night she takes one and a half pills of the chemo drug 6mp; except for Sunday, when she only takes one 6mp pill. 6mp is an anti-metabolite that replaces part of the backbone of DNA. Common side effects include low blood cell counts and loss of appetite.
Every Tuesday night, she takes seven and a half Methotrexate pills, an anti-metabolite that replaces nutrients in the cancer cells, causing cell death. Common side effects include low blood cell counts, sun sensitivity, diarrhea, fatigue, skin rashes and headaches.
Four times each weekend (Sat. am and pm, and Sun. am and pm) she takes a dose of liquid Bactrim, a prophylactic antibiotic used to prevent pneumocystis pneumonia (PCP). Common side effects include GI upset, skin rashes, sun sensitivity, and low blood cell counts.
For fun, we’ve added to the mix one half of a Claritin pill each night, which has helped quite a bit with the cough she hadn’t been able to shake since Christmas.
For the first five days of each 28-day cycle, she takes the steroid Decadron; one pill each morning and one and a half pills each night. Decadron is a hormone that kills lymphocytes. Emphasis on the word HORMONE! Common side effects include (are you ready for this?) mood changes (ya think?) increased appetite and thirst, indigestion, weight gain, fluid retention, sleeplessness, nervousness, hyperactivity, hyper-sensitivity and extreme irritability. That sounds just like me when I am pregnant. I have to laugh at that last one; "extreme irritability" … I’m taking these side effects listed directly out of Nancy Keene’s book “Childhood Leukemia” and while we fortunately don’t get most of them, boy oh boy, do I agree with THAT one!
She still has not learned to swallow a pill or gel cap, so we crush all her meds and give them to her in applesauce with a water chaser. By my estimation, by the time therapy is over, she will have eaten enough applesauce to fill an Olympic sized swimming pool.
Once a month, she gets the IV chemo drug Vincristine through her port (the device in her chest) at the clinic in Atlanta. Vincristine is an alkyloid that causes cells to stop dividing. Common side effects include: constipation, bone and joint pain, foot drop (child has trouble lifting front part of foot), numbness or tingling in fingers and toes, muscle weakness, and hair loss. Watch out for pain, blisters and skin loss if drug leaks during administration.
And last but not least, once every twelve weeks she has a spinal tap (ie, lumbar puncture) where she is lightly sedated and the doctor pushes a long needle between two vertebrae into the space where cerebrospinal fluid is found. A small amount of fluid drips out the needle and into a container, so it can be checked for cancer cells. Then, she receives additional methotrexate in her spinal column, to hopefully prevent a central-nervous system relapse, since the systemic drugs can’t cross the blood-brain barrier.
That’s pretty much it in a nutshell; the maintenance portion of Kendrie’s treatment protocol. The first ten months of therapy were considered “intense” …. This maintenance portion is less harsh, but lasts another sixteen months. So, two years and two months total. If Kendrie were a boy (like she prays for every night, ha!) she would get an additional year of maintenance therapy due to the risk of testicular relapse. If she were to relapse, we would either be looking at some form of transplant, or we would scratch all the chemo she's already done and start over, from square one, with a harsher protocol.
This month, she only missed one half day of school because she wasn’t feeling well (it’s usually one or two half days a month that she misses due to the steroids) but we did have our first episode of “chemo burns” on her palms; small, white blisters all over her palms that itched like crazy. The school nurse called me twice this month to request permission to give her oral zofran, her anti-nausea medication. The school nurse also calls me at least once or twice a week to update me on the status of viruses/flu/chicken pox/etc at her school. She is a HUGE blessing to me!
So, where exactly am I going with all this???? Besides boring you to tears?
I think (and am grateful) that through local organizations like Camp Sunshine and The Lighthouse Retreat, that we Georgia families are in the wonderful position of meeting lots of other families, often dealing with other kinds of cancers. Some of my newest, most-admired friends are the moms of kids being treated for medulloblastoma, neuroblastoma, and rhabdomyosarcoma. Another woman, who I am so happy to have met and consider a friend, is a mom of a germ cell tumor patient. Her site is Mary Grace. She and I and another mom were having dinner a few weeks ago (Kendrie was the only kid there with hair, how odd did that feel?!?) :) and she was talking about Mary Grace's upcoming surgery. She was diagnosed last August and has gone through chemo, radiation, and now surgery to remove the tumor. I'm thrilled to report the surgery was this week and things went great --- Mary Grace is cancer free!! I truly couldn’t be happier for this wonderful family! And, I admit that I felt a twinge of envy that the treatment protocol for leukemia can’t be whittled down to six months, also. Then I felt ashamed of the envy, since these other cancers seem so much “worse”. I mean, even the doctors say leukemia is the “good” kind of cancer for your kid to get. Who knew there was such a thing???
I also got to spend time with past weekend with two neuroblastoma moms, Brandon's mom and Camp Jacks' mom. We talked about how some protocols are longer than others, and what some of the different protocols entail, and it was a good reminder to me that as envious as I might be of the shorter protocols, the optimistic survival rates for leukemia make it easier for me to face the challenge. Yes, the long treatment stinks and yes, some kids don't handle the side effects of chemo as well as Kendrie has. But ultimately, the vast majority of kids diagnosed with leukemia will go on to lead long and healthy lives. I can't imagine being told my child only has a 30 or 40 or 50 percent chance to begin with ........ and heaven forbid they relapse, because there is NO cure for relapse with some of these cancers.
Camp Jack's mom summed it up perfectly: Their (neuroblastoma) treatment is like a sprint-- fast and furious and they're desperate to get to the finish line. Leukemia treatment is like a long distance, marathon run. We need endurance and longevity and sometimes it seems like the end will never get here. Does that mean their treatment is easier because it's shorter? No, of course not. Or that our treatment is any less terrifying because the chances for survival are better? No, of course not again. We're all in this together. Truthfully, I feel fortunate to have met other families who can help me keep it all in perspective. Ours sucks; theirs sucks. Pediatric cancer pretty much sucks. Did you see the movie Legally Blonde 2, where Reese Whitherspoons’ character instantly bonds with a woman she meets who wears the same sorority ring as she does? Believe me when I tell you there is a bond you feel with another parent who has also heard the words, “I’m sorry, your child has cancer”. The kind of cancer, and the length of treatment, don’t matter. They all stink.
My point, although it took me a good twenty minutes and who knows how many words to get here, is that yes, Kendrie looks good and feels good …. so good that her own teacher thought she was done with chemo (!) But she has still gone through a lot and I’m not going to minimize that just because our outlook is hopeful. Next week, when we are wearing our Make-A-Wish buttons at Disney like the badges of courage they are, and being allowed to jump to the front of lines, I refuse to feel guilty about it just because she is doing well and doesn’t fit the mold of “really, really sick Make-A-Wish recipient.” It has been a life-altering sixteen months so far. We are ready for a brief respite from our marathon, where we can pass the baton to a big black mouse with funny pants, even if only for a few days. My plan is to return home refreshed and rejuvenated, ready to tackle the remaining ten months head-on. And, do what I can in the meantime to encourage our fellow racers …. whether they are sprinting to the finish, or trudging along in an endurance race. We are all racing … we all get tired at times. So, there it is. My justification for taking my kids on this Wish Trip to Orlando. For what Kendrie has gone through and for what Kellen and Brayden have sacrificed (whether they knew it or not) along the way.
One last mention before I sign off for the night (actually, at this point, it will be technically “morning” before I get the update finished) -- Kendrie received her first hair cut yesterday. Not my choice, and not something I am happy about. I had taken Kellen for a desperately-needed trim and Kendrie announced about a million times that she wanted a haircut. She’s been asking for a month or two, ever since it got too long to spike on the top. I kept asking her if she was sure because deep down I was hoping she would change her mind. But she insisted, so I said ok and up into the chair she climbed. I’ll admit I got a little misty-eyed, thinking about how far we had come and what a milestone this was. Then, I’m not quite sure what the hairdresser was doing, but she mentioned something about spiking it and yet retaining a sense of femininity at the same time. So, Kendrie is now the proud owner of the World’s Worst Pre-School White Trash Mullet you have ever seen in your life. And, she refuses to wear it spiked. That was money well spent, don't you think? Don’t be surprised when you see me putting those funny mouse ears on her head in every picture from Disney. How long until it grows out again???
We’ll update when we get back!! I hope you all have a great week,
PS. I would like to let all of you know that I was donating blood on Tuesday and the technician mentioned to me that the state of Georgia is critically short of blood right now. They are even planning to do a media-appeal for donors. If you have a spare hour, please consider donating. ALL states, not just Georgia!! Thank you!
My perspective is that my mom is a blabbering fool and there is no need for me to make this update any longer. See you in Florida, baby!