Is it wrong that i'm scared to bring her back home?
I've posted this in two categories, the parenting one and the cancer forum, because i wasn't sure what forum would be best.
I have an 8 year old daughter fighting leukemia, and on wednesday she'll be starting a new trail to get it back into remission. The trial involves two different chemo drugs, and a far less intense treatment. For the last year especially, she's almost always been an in-patient at the hospital, due to the strengh of the chemo she was receiving, and it's been a small comfort to know she's in the best possible place in case of anything urgent happening.
Today we were told that, unless she reacts badly to the treatment, we should start preparing to bring her home in the coming months, and she will continue her treatment as an out-patient most of the time. After the initial joy that she'll be able to lead a more normal life; i've realized that i am really quite worried about having her home. She has several tablets she needs to take and what if i mess those up? Looking at her today, i can't see how she'd be able to cope at home, here she has every facility and hundreds of friends to encourage her.
My wife's practically bouncing off the walls, and i feel guilty as hell for thinking it, but i'm really not sure i want to take her from the security of this hospital.
- Panda
I have been through this with my son .. and you will be surprised by the strength you will find to do what is best for your daughter. She belongs at home with her family. She will do so much better and even if she does not at least she will be home. Take a deep breath and face this . . you can do it . . and her pediatric oncologist will not 'abandon' her . . they will all be a phone call away and more than willing to help you whenever you need it. Many other parents have come before you and done this and you can too. Good luck. You'll love having her home once you establish a routine.
You may benefit from joining an online parent support group for ALL. There are parents who have faced all the problems that you are now experiencing. They may be able to put you at ease and answer questions better than a normal parenting group . . they will understand what you are going through.
ACOR: Support Group for Childhood Acute Lymphoblastic Leukemia (Cancer)
http://listserv.acor.org/archives/all-kids.html
- Anthony S
quality of life. bring her home love her she is in the hands of GOD
- Lily L
OF COURSE you are scared, and all your reasons seem pretty rational. Who wouldn't be scared?
Just make sure you are 100% clear on her med schedule before you take her home. Write it down. You seem like you are a pretty dedicated dad. You will do everything you can. I'd bet she want to be at home as well.
- Messykatt
John, this is completely normal and isn't as uncommon as you think. For example, parents of preemies go through the exact same thing. They want nothing more than to bring their baby home, but they feel they can't provide the care the NICU does.
The first thing you have to do is trust the doctors who have been caring for her. They do this 24/7, and they would never release her if there was a chance of an acute type problem developing. By the time they let her go, they will have observed her on the new chemo, they will have cleared her for unanticipated side effects, etc. Oncologists (as you probably know by now) are extremely cautious, and this is even more true in these days of crazy litigation. If there's any doubt in their minds, she stays.
Also, you will have a consult with them before she's released and will know the pill regiment like the back of your hand. Even if you somehow forget to dose her one morning, this isn't the kind of condition that would cause great harm (like forgetting to give her insulin, for example). It seems overwhelming to you now because you're watching the inpatient care and wondering how you will re-create it. The only thing wrong in all that is that you won't have to re-create it. :)
I'm sure she'll miss her buddies and the support, but every 8 year old would rather be home. And it's good that she's heading in that direction.
- john jones
Hi John, well everything Panda said is true, so please take comfort in her words.
I didn't think i could clean the central line but I did, I didn't think i could hold my son for lumber punchers but i did. You have already done things you never would of thought you could ,but you have.
This is another step closer, and you'll be fine.Your feelings are normal.
Take care.
Leukemia — Comprehensive overview covers symptoms, causes, risk factors, treatment of this blood-related cancer.
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Charleston, WV health care protest and forum
Dozens of protesters both for and against overhauling the nations health care system gathered outside a health care forum Tuesday morning featuring Sen. Jay Rockefeller. The invitation-only event was sponsored by the West Virginia chapter of the AARP, West Virginians for Affordable Health Care, and the West Virginia Center on Budget and Policy. Other such events across the country have been disrupted by people opposed to overhauling the nations health care system, but Tuesdays event was peaceful. About 250 people attended the forum in Riggleman Hall at the University of Charleston. Protester Larry Medley said he was afraid a health care overhaul would lead to higher taxes and the rationing of health care for seniors. Amy and Rich Bord of Grafton talk about their nine-year-old son, Sam, who has leukemia. They have exceeded their insurance policys lifetime cap of million. State officials told them they could divorce, go bankrupt, or purposefully lose their jobs to get on the public dole. Rockefeller says a public option would lead to more competition, and over time more Americans would chose that over their private health insurance.
Leukemia — Comprehensive overview covers symptoms, causes, risk factors, treatment of this blood-related cancer.
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