Neuroblastoma- how to help?

[canoehead, BSN, RN]

My 3yo niece was diagnosed with stage 4 neuroblastoma this week. My sister and her husband are beside themselves, of course, and so is the rest of the family. They live about 3000 miles away from anyone else in the family, so it's hard to think of them out there all by themselves and coping with this.

We are all trying to think of ways to help. Of course Dad is the conduit for information on this end so they only have to make one phone call with updates. Dad also got a phone plan so they can call anytime for free. I offered to take care of whatever Christmas shopping they needed done and mailed, but it all seems so little compared to what they need. Plus we aren't right there to notice little needs, or make meals, clean, all the stuff that would be done if they were within driving distance.

What have families done that made things easier for parents of a child with a serious illness? I need ideas, anything that we can do. We are all biding our time about visiting, my BIL's parents are out there now, and they may need time alone as well.

Thanks for any and all ideas.

[RN2Bn2006]

I am so sorry to hear about your neice canoehead. I don't really know how what to tell you - what ya'll have done sounds helpful. If they don't have cellphones, providing them with phone cards they can use from the hospital is great.

I personally had a friend who had two - yes I said two - of their children diagnosed with Neuroblastoma. I can't remember their exact ages at the time, but one was 2, and the other was 4 I believe. They were diagnosed just months apart. The older child, a little boy was Stage IV, also and is cancer free today. Here is the website - if you read his journal you will find out a little bit of what he went through. He eventually had a BMT, but today is a beautiful red-headed ball of energy. http://www2.caringbridge.org/ar/elijah/

His sister is also cancer free, but did not have such a great outcome. She had problems from infection from chemo, and suffered brain damage (long story). This was not directly related to Neuroblastoma, just chemo related problems in general, but might not be the most encouraging thing to read right now.

As for my friend, I gave her a journal and pen to keep with her at the hospital. She said that was so helpful, because she was able to write down her feelings, and things the doctor said when they come in and out, etc.. She like it so well, she bought some to hand out at the children's hospital to newly diagnosed cancer patients parents. I also kept in touch, and let her know that I was still praying for them, and that I cared. We live in a small community - where everyone knows everyone, but a friend and I arranged a fund raising bake sale in the bank where we worked, and were able to raise $1,000 for them to help with their travel expenses, food, etc or whatever else. When the first child Hosanna was finally coming home from the hospital after many months, a friend and I made a banner for their front porch, put up balloons, and left presents for them to welcome them home. I know these aren't things you can possibly do since you are so many miles away, but just wanted you to see just some of the smaller things we did, that my friend says she will never forget. Maybe you can come up with ideas from this.

I pray that your neice responds to therapy, and lives a long and happy life.

[johnnrachel]

I just responded to this thread to tell you about Caring Bridge which the prior post mentioned. I will pray for your niece. God Bless

[EricJRN, MSN, RN]

I'm sorry to hear about this child's illness.

You might consider donating blood. You can find out whether your local blood center would be willing to send replacement credits to the child's hospital account. Neuroblastoma pts often end up getting transfused.

[renerian, BSN, RN]

I am so sorry..for your family..I think Erics idea of blood donations is excellent......blood products..........

renerian

[canoehead, BSN, RN]

Thank you guys.

My neice was scheduled to start chemo Monday but due to a bowel obstrution it got delayed while she got Golytely (human Drano) and they started today. I talked to my sister on the phone and she is doing well considering the circumstances.

I got my goodie box put together and ready for mailing. Took a whole roll of tape to make sure it holds together! Then finally toted it out to the kitchen and found one mor thing that should have been in the box and got missed. That is always the way it happens, but I will certainly be sending another parcel at some point. I have also found that working in the ER is an advantage since I can steal the really good stickers to slip into cards for my baby. :) Found out today that when the doc came in she piped up with "What to you WANT?" and is fighting meds, even Tylenol (with a temp that doesn't go below 40C) so she's certainly still got some spirit.

I will be sending that link to my sis, we NEED some good news. Thank you.

[elthia]

You said that they weren't withing driving distance. well, they are probably spending a lot of time at the hospital. Find out what restaurants are nearby and give them some gift cards to those nearby restaurants. A coupon to a nearby dayspa would be nice, just to relax for awhile...I've suggested this for many family members with caregiver role strain. If they have a religious preference, a book with daily prayers/affirmations or something similar can be nice.

[canoehead, BSN, RN]

Excellent idea!

[KatieBell]

Sounds like you are an excellent support. To get more support for your family check out this web site:

http://www.chemoangels.com

I've been a ChemoAngel for several years now, and have had 3 different patients. it has been an excellent volunteeer activity for me, and it has really given a lot of support for patients and families with Cancer.... Sometimes it helps to have that outside support- specifically for this- I know one Mom wrtoe to me because she felt she couldn;t worry her family. It doesn't cost anything to get her a Chemo-buddy. They are so good, usually remembering the other siblings and parents....

Things I have done for my patients that you could do to help:

Merry Maids- have them come and do a one itme cleaning- it isn't too expensive...or have then come once weekly...

Fun Medicine cups- I used to paste googly eyes on them...and when my patient was a little older, I let her decorate her own...helped with med taking...

A squirt gun to "get the doctors" (They only get a little wet and the child feels so much more in control, plus it is fun for adults too.)

Care packages that include stuff like nice wet wipes, soft tissues (hospital ones are awful), snack packs of healthy dried fruits etc- so they don't stuff themselves at the vending machines....and of course a roll of quarters if vending machines are needed...

Of course, just being there on the phone, and sharing your knowledge of hospitals, is the best of all.

Best Wishes for your niece, I have a Nephew that is the same age, so this really hits home for me...

[canoehead, BSN, RN]

I loved the chemo angels site, it has lots of ideas to help, and small gift ideas. I am going to have to find out about restaurants and cleaning services in Calgary-I see a day of googling ahead of me.