On Facebook at facebook.com/wannabebellied, I have been posting ways our lives have changed because of cancer. I am attempting to post every day of the month (I missed September 1st 🙁 )
I have put those posts here too:
Day 2: In honor of childhood cancer awareness month, I’m going to try to post each day the way cancer has changed our lives: we know what and how to spell neuroblastoma.
Day 3: I can now give subcutaneous shots. And Jesse is so used to it that all she did today was scream during the shot and never shed a tear.
Day 4: We all have a shorter haircuts. Jesse’s due to chemo, Mike’s due to well.. it was going that way, Christine and I to help with cancer research and support Jesse. Plus our wonderful friends who joined us on April 7, 2011 in putting on the St Baldricks event and participating.
Day 5: We have been extremely blessed to meet many wonderful people. Doctors, nurses, child life staff, and people in our community. Plus our friends and family we have know all along, but have done so much to help us.
Day 6: Jesse was not able to start preschool as her sister did at the age of 3 due to her treatment and the stem cell transplant wiping all her immunizations out.
Day 7: Jesse has had morphine before the age of 3. I’ve never had morphine… And I am 10 times older than her.
Day 8: Jesse has spent approxmately 110 days in the hospital. This doesn’t include the 20 days we traveled an hour and half back and forth for radiation and the weekly or biweekly clinic visits. But we are very lucky because we have met others who have stayed months on end.
Day 9: We know that cisplatin, cytoxin, doxorubin, carboplatin, vincristine, etopiside, topetecan, and melphan are names of chemo drugs. And to Jesse, that medicine is for Fred the IV pole
Day 10: some days I am exhausted by this life. Tired of trying to keep everyone in the family happy. Tired of being screeched at and playing 3 year old power struggles magnified by medicines she is on.
Day 11: Christine hates when Jesse is at the hospital. She often comments that she can’t wait for us to be a family again. I always explain to her that we are a family, we just have to be in separate places for a little bit.
Day 12: There are days I feel really guilty for being frustrated over losing time to exercise, to participate in karate, regular working hours, and be there for Christine and Mike too. But I pray everyday that I get to keep Jesse and she will never have to endure chemo, radiation, or immunotherapy again.
Day 13: Mike appreciates the Saturday morning breakfasts and eating dinner when we are here together as a family.
Day 14: The most annoying part of Jesse’s hair loss was her loss of eyelashes. They would fall in her eyes which would launch her into a screaming fit. And because of Accutane (Acne drug that can mature immature cells) her eyelashes are falling out again. So we are suffering through the screaming about eyelashes in her eyes and unwillingness to listen about how to get them out.
Day 15: I though of this one this morning as I made my second over an hour driving on I-64 trip – Need teleportation. Could pop into clinic get Jesse labs done, pop out to get work done, or let Jesse play with her sister.
Day 16: Jesse is facing a surgery to replace her CVL. It just won’t make it to the end. I will not let her go through those double doors to the OR awake. I made that mistake once. I will not live with a double vision of that nightmare.
Day 17: we were neat freaks before, but Jesse’s chemo and stem cell rescue have caused us to be more conscious of germs. Hand washing is so important 🙂
Day 18: I am still blown away by the kindness of strangers. Thank you to everyone of you who has given us a gift, money, and/or prayed for Jesse. We are still floored.
Day 19: I used to do laundry on Wednesday and Saturday. Now because I don’t want to leave any wet towels or other clothes laying around to grow bacteria and fungus, I do at least 1 load a day.
Day 20: Because of high dose chemo and the use of stem cell rescue, Jesse will have to redo all her immunizations next April. Her body has been “wiped clean” of the ability to fight off diseases that are now less common because of vaccines.
Day 21: As any parent of any child who has to undergo any surgery (or adult facing their own surgery) would say- it just never gets easier. Jesse has surgery tomorrow.
Day 22 and 23: Jesse amazes me with her patience to wait for surgery after not having anything to eat for 14 hours.
Day 24: Jesse has come to know the nurses, doctors, and other staff so well I think she’d go home with them:)
Day 25: I have a large grey tub in the back of the vehicle. In there are clothes, toys, food, and other necessities. If Jesse has an emergency, we just have to run out the door. I don’t think I’ll ever let go of that tub.
Day 26: We have learned a lot about Accutane. While it’s a drug for acne, it also can make immature tumor cells mature. With the way it makes Jesse’s skin look, I really hope it’s working.
Day 27: While the staff is warm, friendly, and inviting, there are times that Jesse and I would rather be home.