I'm the mother of a 5yr old beautiful daughter, who just celebrated her 2nd year of remission from a solid tumor cancer. I know pretty darn well what you are feeling. As we went through all our treatments, clinic appts., we made friends. Some we still have, some got "called home".
You are already doing a great thing by offering your help. One of the biggest things to try to get people to understand is that you sometimes just don't know what you need.
I can only speak from our personal experiences, but here's some of our top helpful memories.
1) Meals are very helpful. Not only while the family is inpatient, but when they are home also. It's very tiring and draining to keep your "game face" on while your own heart is breaking on the inside. When our DD was diagnosed, we were (and still are) a part of Tucson Moms group. Our playgroup friends would all take turns bringing us meals. If they chose to bring their kids with them when delivering the meals PLEASE BE EXTRA AWARE OF ANY SMALL SIGN OF SICKNESS. Because the chemo totally knocks out the body's defenses, any small illness can set back their chemo treatment schedule.
2) Offer to go with your friend, if no one else can, when she's at the HemOnc clinic. It can be a VERY long day, especially for some of the Leukemia kiddos. If they need blood products, it's not unheard of to spend like 12 hrs in clinic sometimes.
3) After our experience, my hubby became the current president of Candlelighters Childhood Cancer Foundation of So. AZ. Here's the website http://www.candlelightersaz.org/
The group is run by parents who are all parents of a cancer kid. We have all stages of members. It cost them nothing, we even offer some financial assistance at times. Frequently a parent has to take a LOT of days off work to take care of their child. Yet the gas & electric still need to be paid. I presume she's at UMC. The Ped. Onc. team there is soooooooooo amazing! We still bring our nurses from 3 East goodies throughout the year. Anyway, our executive director is a parent of an ALL Survivor and I know would be more than willing to come talk to your friend, if she'd like to know where their path may take them.
It's a free website where you can post your child's story. Everyone that loves your friend will want to be updated on the latest findings. Instead of calling or emailing a hundred people, you post it one place and her friends can sign up for alerts. If your friend doesn't have time or desire to do that, you could offer to do the updates for her. Just have her send you what info she'd like to be there. It can be public or private, by invitation only. For an example, here is our DD's caringbridge site:
5) Leukemia is usually a 2 yr road of treatment, depending on the type. What ever pace of assistance you plan to offer, make sure you share the load as it may be a long, hard and tiring trip for everyone.
6) Don't suggest to people to bring cuddly toys. We received SO many that we're still clearing them out after 2+ yrs. Instead, go for low energy complete craft kits. It's best if it's all brand new. Something like a shared crayon is not a good thing for an on-treatment child. Chemo zaps their energy so your looking for things they can do in a hospital bed, or play with in the 3East playroom.
7) If the child's white cell count is good, and she'll be told where it's at every day, ask if the child would like some of their friends to come play with them in the playroom. Try to give them something of their normal routine. Keep it to maybe 2 friends at a time, and make sure that the kids are told that their friend might look different.
8) There is a fantastic social worker on 3 East named Laura Haggerty. We met her through Tu Nidito when she worked for them. She knows me and my family well. You could call and talk with her, and although she can't give you specific information about your friend's case, she could give you information on what else you could do to support. Maybe help out with her housework, offer to do her grocery shopping, laundry, dishes, etc. All depends on how good of friends you all are.
9) The hospital does have movies that the families can take back to their room, for no charge. Maybe ask what the child's favorites are and find out if someone could lend them, or rent them from Blockbuster or something, so if at 3am, they can't sleep, they can put their movie on for some distraction.
10) Decorations for the room!! We would bring in colorful windsocks, a handprint collage on poster board that our playgroup made for us, photos of our dogs. Anything to help personalize the hospital room and bring some happy colors and pictures to their day.
I'm sure there is a lot of other things I should say, but it's 1am and I have to teach in the morning. If you all are in the Phoenix area, the Candlelighters branch there is just getting off the ground, I believe. The Leukemia & Lymphoma Society is another great source of help. As is the Melonhead Foundation in Scottsdale. Please feel free to give my email to your friend if she just needs someone to vent to that's "been there". I wish you all the best of health. Breathe alot, allow yourself to feel the emotions that are running through you. Give your friend a shoulder to unload on, then take her load and put it to rest for her. As parents, we always forget to take care of ourselves, especially when our loved ones are hurting and we can't really help. Be as patient as you can, and remember that they will need their space, as a family, sometimes to just "be". Bless you all and take care.
For updates on Ilaria's progress visit: www.caringbridge.com/visit/ilariaeasom
Plans have begun for our 3rd annual Walk 'n' Lemonade event, 09/27/08 http://www.walknlemonade.com
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