39 answers

Advice on Children with Terminal Cancer

In the last 2 months we have found out about 2 children (one is 6 and one is 2) in our little circle of friends that have been diagnosed with terminal brain cancer. One of them is my 6 year olds best bud, and the other a friend.
My heart ACHES for them, and I don't know what to do for them. They both have a very good support group here, so I am feeling very helpless. I have offered my services to them (babysitting, or whatever...), but i still have a great desire to do something for them. I just don't know what. So if any of you have any ideas, or advice on what we can do that would be great.

What can I do next?

So What Happened?™

Hey Gals THANKS for all your advice. I was able to be apart of a Carnival Benefit for my son's friend. I think they did very well raising money for the medical expenses. It turned out wonderful and the kids had a fantastic time! If anyone wants to make a donation to the family they set up a fund at Wells Fargo Branches in the boys name. If you would like to do that just send me a note and I'll tell you what name to put it under.

Featured Answers

I think one of the nicest things to do is to get them a gift certificate to get some fun family portraits done. I am a photographer and I know that many of us give discounts on session fees and/or prints for those families aflicted with cancer.

Please let me know if I can help..

C. Hill

my website is www dot clairehillphotography dot com.

More Answers

What about making/bringing dinner every Wed or helping w/laundry on Tues., something real practical that they don't have to think about and if there is anyone else who wants to help out maybe you could organize meals for other nights.

They will appreciate your thoughtfulness and won't be able to refuse when you bring it to their door. If they are spending a lot of time in the hospital, you could buy some gift cards for them so they can have money to buy food or even go to the movies, buy gas, etc.

Thoughts and prayers,
M.
Mom to 5 Wonderful Kids
www.4MyChildrenSake.com

1 mom found this helpful

I know it gets very expensive so if you can donate money or have a bakesale, carwash, bbq anything that can be a fund raiser would help. Perhaps have the chruch sponser the event or take a special offering. I dont know there financial place. Also be there for them. Just being there for them even if they dont answer the phone or respond to any e-mails. I know it helped my husband out alot when he lost his 60 yr old mom to cancer this past dec. Just having a voice message that someone is thinking and praying for him ment alot to him. I will be praying for these little ones, there parents and your family too. Also I have heard of a place that takes clothing of the passed and makes a teddy bear out of it. I saw it on Denice Richards its complicated" t.v. show. I am thinking it was Hospice that did it for them. God bless.

1 mom found this helpful

One thing I have discovered is that if you tell someone to call you and you will come help...they won't call you even if they need you.

So, when you call just plain ask them, "What night can I bring over dinner this week?" and schedule it right then on the phone. Or call in the morning and say I am free today, can I come on over and just help you out around the house...go on over and take some cleaning supplies with you. When you get there ask what room is bothering them and get to it and clean. When you go over take a plate of cut up veggies/fruit/snack foods and leave it in the fridge for quick snacking/eating. I never wanted/felt up to cooking when my mom was in the hospital.

Some of the very best times that friends helped me out was they would do a drive by...they would leave a brown paper sack of sandwiches or a couple of pies from a local bakery or a loaf or two of fresh bread wrapped up on my porch. And then call to tell me it was there and go out and grab it. Because sometimes I would be so overwhelmed that I wasn't up to visiting.

It is the little basic things of living that seem to pile up and overwhelm you when you are dealing with caring for a sick relative.

Be proactive though...they will need and treasure you as a friend.
{{{{hugs}}}}

1 mom found this helpful

My 2 1/2 yr old is in remission from Leukemia...there is a lot you can do...sometimes just being there...one of my good friends did something that was more helpful than anything...she had her kids come over and play with my son...she took me in the other room...sat me down...and just said "cry"...at first I looked at her and thought she is out of her mind...but before I knew it...I was crying...and it was so cleansing and helpful...we had cry sessions every two weeks until he was well into remission...14 months now...there is also a lot of other things...getting some groceries that they may need like laundry soap gift baskets...that always helped....the medications make the kids really sick...I went through more towels and laundry soap then I could possibly keep track of...hope this helps...I will keep in my thoughts and prayers

1 mom found this helpful

This is speaking from a Mum who has had a son pass away when he was 17 months old from brain cancer.
I know when Dylan was sick and in hospital I longed to speak about what was happening, but the most common question was "Are you ok" well I always responded with a yes because I thought I had to stay strong all of the time.
What I really wanted to do was scream and yell. I never broke down in front of people and looking back now I wish I had of as people thought I was cold hearted. But that was defence mechanism.
The best advice I can offer is to just be there for that cuppa and "chat".
If your friends break down, let them, hold them and just be there. Sometimes words all come out wrong and sympthyies are very hard to express.
If the child is well enough, how about contact the Child Cancer Foundation or equivilent there (I am in New Zealand) or the make a wish foundation and organise a Family get away where they can build some more memories. I took lots of photo's of Dylan even when he was sick as that was a part of who he was.
I have photo's of him when he came out of surgery and when he passed over, and i cherish each and every one of them.
Take footprints and handprints of the child, locks of hair. All of these things the parents will cherish.
Organise family portraits together.
Instead of babysitting, organise a dinner out for the parents or even better in their home, cook them dinner and take the children so they can just sit and relax in their own home, where there are no public boundries of having to stay strong.
Housework is another good way of helping, i could never keep on top of that while we were in the hospital as I stayed in with my son.
They are very lucky to have a support group, I struggled on my own with a 4 year old.
Being a great friend doesn't mean you need to do anything other than be there when they really need you.
And you are also going to have to think of your child and how he/she is thinking and dealing with all of this as well.
I hope this helps a little, I know they are only small things, but these are the things that will help make them memories, making video's is another good way to capture memories as well.
Take Care and anytime you wish to get in touch please do.
My thoughts and prayers are with you all.

1 mom found this helpful

Dear T.,

I am so sorry to hear about these children. It's always harder when they are so young. My suggestion would be to get a prayer chain going. The more the better. I have seen a lot of miracles in my life because of praying. I had a cousin
who was born with a hole in his heart & they said he would not make it through the night. The Elders of a church came in & prayed over him all night & the next morning the doctor could find nothing wrong with Troy. He is now in his early 40's with two sons of his own. I firmly believe in the power of prayer! Just knowing that you are there for them I'm sure is a lot of comfort. I will be praying for these children too. My best to all of you. God bless.

C.

1 mom found this helpful

My Heavenly Father,

We asked that you throw your loving arms around this child and remove anything that is not pleasing in your sight from their body. Remove the pain and restore her memory. In Jesus Name We Pray - AMEN.

A freind sent this prayer to me for my mother today, and I think you guys could use it as well.
Love,
B.

1 mom found this helpful

We have had the same or similar experience before. It will help if you can get a calendar and organize meals to be furnished by your circle of friends a couple of days a week at least. Anything to make their life as normal as can be at this stressful time. The main thing though, is PRAYERS and support. If you have several stay at home moms you can take a few moments to have meditation time together when kids are napping. Good Luck!

I, myself, have a daughter with leukemia. No one can understand all the things you go through unless they are going it or have been through it. The parents may or may not have a support group, but if they don't they should be able to find one on acor.org (though it's on-line, the parents are so helpful).
Gift cards were also helpful, especially gas and restaurant cards. It meant the world to me when people would just be there with me-bring lunch and eat with me-no need to say anything-nothing can make it better. Notes, etc. regarding praying for them, etc. mean much. I know you will be a blessings, T.~

Kids are pretty resilient - the stress is usually more on the parents and the siblings. Since treatment results in a lot of hospital visits and waiting rooms - a "travel bag" filled with "quiet activities" keeps them busy. New items they do not already have will be more interesting. It should include socks and maybe a lightweight jacket or shirt for those chilly rooms.

A goody bag is also great for mom and siblings. For mom, include magazines, individually wrapped snacks, change for vending machines.

Sometimes you can purchase "parking credit" for the parents to use if the medical center where they go has paid parking.

If the sick child has other siblings, the parents may need a friend to take the siblings to church or school activities that they are unable to do themselves. They may not always call you and ask because they may be too preoccupied - so this is where friends and neighbors can be observant and just offer to do a specific thing.

Although meals are nice - sometimes just taking them a freezer load of quick microwave meals is better since they may not be sure when threy will be home. and - recruit a few friends to clean their house one day is great too.

Although you may not be able to help the child directly, assisting the family with the mundane but necessary chores relieves them of that responsibility and may ease their stress.

I am SO Sorry to hear this. I lost one of my best friends to brain cancer a couple of months ago. It is not easy.

My advice and things that I did. Bring over meals whenever you can or organize meals to come a couple of times a week. I will tell you up front it is easy to stay involved and active it as time goes by is when they will need you more. Hang in there and be patient. You may not be needed as much up front but as time goes by is when many fade and they will really need help.

Also, if you are really up for it. Fundraising, the cost of everything is crazy even with insurance. There are many things that you can do it just depends on what scale you want to fundraise on.

If you need more ideas my email is ____@____.com

God Bless,
J.

You might want to look into this Houston area non-profit organization for children and families with children that have cancer called Kids Unlimited. I recently heard about this organization from their vice president (who works for the same company as I do) and think it is such a great organization. They have a ranch near the medical center that serves as the organization's "hub" and they do all kinds of activities there. They also take the kids on fishing and bowling tournaments and to sports games (Astros, Aeros, etc.), etc. I encourage you to look at their website (www.kidsunlimited.org) for more info. Take care and God Bless You for helping their families any way you can!

My mother-in-law has a terminal illness and her best friend set up a share the care group she read about in a book. We gathered 35 peoople committed to helping out and designed a rotating scedule of help (meals, company for her during the day, housework) The one thing they said that really stood out to me was that it wasn't that my father-in-law couldn't do these tasks or even felt he needed help doing them. It was about doing the tasks for him so all his timme was free to spend with her doing whatever they wanted to do. It was about giving them the maximum amount of time they had left to just spend together. I hope that helps put whatever you can do for the family in a different perspective.

We had a family in our church with the same issues. The most important thing right now is for the families to spend as much time together as they can. If you are very close to the families it will be less awkward to discuss these things with. There is one major thing you can do for them...cleaning or hiring a maid service...you know how much time it takes to keep up with a house. That is the last thing you want to worry about when you have a sick child. The gal in our church just let her house go to the point that we had to go in and start from the beginning...it took us hours...don't let her house get that far, but talk to her before making any arrangements. Let her know that it would not be shirking her duties as a wife/Mother/homemaker, but explain that for now, her priorities have to change and that you want to help. In a lot of places in Texas, LEGAL hispanic immigrants will do laundry, bathrooms, change bedclothes, ironing, vaccuming, mopping and dusting. You should be able to hire someone for $35-$50 a day and usually once a week is sufficient to keep things managable. I am sorry that you and your friends are having to go through this. Our prayers are with you all.

My daughter had a classmate with a younger sibling with brain cancer as well. The school decided to send home mass flyers asking if anyone was willing to provide healthy dinners during the week of chemo and/or hospital visits. Many, many parents responded bringing home cooked meals frozen, ready to heat up by the family after long days in the doc's office. This provided great support for a family with little time and energy during this difficult time.

Any time someone is suffering or going through a bad time, numerous people offer their support but wait for a response. Usually they don't get it, because the family is too busy dealing with everything.

Suggestions: JUST DO IT-Don't wait to be asked!
Every family choose a night to bring a meal. (Make sure you get suggestions-to make it easier, a checklist of foods/meals will make it easier so they won't have to think too much).
Alternate taking turns to go to the grocery store, cleaners, etc.
Have the children form a prayer group. There are a lot of books their age that talk about diseases, death, etc.
Have the kids/parents make and draw a photo album for the family. This needs to be as positive as possible-use lots of color, but still deal with the changes (appearance, etc.)!
The kids can make and sell HOPE bracelets. Use your imagination for the colors or let your friends choose a favorite color to represent them.
Above all, be completely honest with your kids. If you find it hard to talk to them, a priest, counselor, etc. can give suggestions and help.
May God bless you all, as we have dealt with stages 3 & 4 cancer and a friend's brain tumor in the past years!

You have already been given a lot of really good advise so I will just add, don't say "if there is anything I can do", offer specific things. Call and say I am coming to pick up your laundry, mow your lawn, take the other kids for an outing. Make yourself available but be specific.

When planning meals ask:

What time do you normally eat
How many people will be eating the meal
Any specific dietary needs?
What does your family love to eat?
What does your family not like?
Low sodium?
Pork?
vegetables?

Once I gathered the information I write directions to their home and include all information someone who is furnishing a meal might need. This cuts down on the phone calls and questions, or worse someone making a meal that the family wont eat.

Whatever your special talent is, offer that to the family.

The best thing that you can do listen, take pictures, help when needed, have your son be there too for support and for the friendship for the child. The greatest treasures in life are the one's that only last for a second. Keep a memory box for the family and for your son so they can always remember. Let the parents know that anytime they need or want you for anything you will be there. They just may not need help right now but in the future they may so don't feel helpless your doing all that you can by just being there.

My thoughts and prayers are with you all.

Of course, keeping them in your prayers is one of the best things you can do. I know we tend to think that is just not enough sometimes and we want to lend a helping hand through acts of service. When my father was in his last days with brain cancer, one of the things that was such a blessing to my family was people bringing meals. It kept us from having to worry about cooking or making trips to the grocery store (and from ordering pizza all the time). Another neighbor took care of the yardwork for us and yet another neighbor even came over and helped with laundry. All of that help allowed us to spend more time with my Dad and not having to worry about all the day-to-day chores that had to be taken care of. I hope this helps in some small way. I will keep these 2 children and their families in my prayers.

You've recieved a lot of great responses so far, but I just wanted to add my 2 cents.

My husband is a childhood cancer survivor. He volunteers at a camp for kids with cancer every summer. We've seen a lot of campers pass on, but we also see a lot grow up.

I agree with the responses that all you can do is be there. If there are siblings definitely offering to babysit should be a big help. Do they needs transportation to and from treatment? Can you organize a fund raiser to help the families? Just a few thoughts.

Another thing you may want to do is educate yourself on the type of cancer and offer any support you can to the parents. I hope they are getting 3rd opinions on everything and looking into all possible treatment options!!!

I will keep them in my prayers!

gift cards to restaurants
pay for a maid service, or show up to clean

Someone mentioned this below. Maybe set up a time to take some candid or posed pictures of the family and children (if any) with their sibling. I'm certain the family would cherish the pictures forever.

Pray for them. Love them and their parents. Ask the children if the need any thing. We ask the parents and most of the time they will say they are ok.
If there is anything I can do Let me know.

Hi T.-

One thing that I can recommend for the family is the website www.caringbridge.org. It helps them keep in touch with everyone via the website. People can write in the journal to the family and they can post their journey. It is a powerful source to keep the family and friends connected during this time in their lives.

Good Luck, C.

That breaks my heart to hear about children with any illness. I would do anything really as far as making them happy. Any little surprize or a meal for the family. I would also start a prayer change for them with your church or any local churches. I know that medcial expenses are so high you could start a fund raiser for them. I would also remind them to call St. Judes for children with cancer. I'm so sorry this had to happen. My heart and prayers go to those two kids and there families.

You could prepare a meal for the family. The best thing you can do is to pray for these families. Right now they are probably in shock and just as confused about what needs to be done as you are. When you are with them, be a listener. Usually people in this situation need someone to talk to. You do not have to say anything, let them talk.

This really touches me. All I can think of is making a donation in their name. I am glad there are people like you. Keep offering your support to them I am sure that means everything to them. Also you can nominate them for the Kidds Kids trip. It is a national radio show called Kidd Kraddick in the morning and they take children and their family to Disney. You can probably google the show and listen to them on the web if they do not reach where ever you might be. Good luck.

My heart aches right now for these families and their families and friends. You are very kind to want to offer them help. I'm not exactly sure what you're looking for but here are a few suggestions...

*prepare meals for them, things that are easy to heat and savable for leftovers ~ set up a regular day or two where you bring them, say Mondays and Thursdays. Something like that.

*offer to run errands for them ~ grocery shopping, pick up laundry, etc.

*they'll prob. need help with house/yard chores.

*offer rides to the hospital/dr.s office visits, etc.

These are just a few ideas. Get creative. But when you offer something, make it specific. If you just say, "let me know what I can do / when I can" they may not take you up on the offers. Instead, if you want to bring meals over say something like, "I'd like to bring meals to you on such and such day(s). Is that okay with you?"

If you're wanting to do a fund raiser of some sort, there are lots of options for that.

I'll be praying for you and these families.

Follow their lead. This is sooo heartbreaking, and you want to be there, but you don't want to be intrusive in what they might see as their last precious moments. It's easy to say the wrong thing--with the best intentions--and, fortunately, they will understand just being quiet. It's personal and different for everybody, so I cannot stress enough to follow their lead.

The following link/URL might be helpful. Maybe you can contact someone there for insight. http://www.mdanderson.org/children/

Tough question. Don't wait for them to call you for help. Pray for them, pray for how you can share God's love with them, and when you feel lead, just step up and do it. Maybe its bring a meal, or housecleaning, babysitting to give the parents a night out. Let your kids make cards or pictures to remind the children they are thought about and prayed about. Have your kids think of something their friend likes to do, that they can do in a hospital bed, and make up a care package. I think its hard for people to accept help, even if they could use it. Sometimes they just need to know you are serious and really want to do something.

T., I had a brother that just died of gliablastoma multiforme a very agressive stage 4 brain caner. He lived 20 months while most die in 12 months. Looking back he did some things right and some things wrong.In the end we know God is sovereign.

However if I were them I would immediately consider some things in the alternative realm since allopathic medicine hold little hope and the results are less than satisfactory. To read a little bit about the ineffectiveness of chemo check out this link and there are many more...Dr. Ralph Moss that wrote for Sloan Kettering has a book called Questioning Chemo therapy. Doing a tumor removal may give temporary relief but chemo and radiation many times has so many side effects. There are a couple of things that have been helpful for some. One is something called PolyMVA (google it), or using something called Zynergy and Megahydrate. (if they are interested they can get this wholesale from Jim Walters below of let me know and I have another source. Shaklee has a product called Vivix. While the child may not need a "anti-aging" tonic this is Reseveratrol on Steroids and Resveratrol does halp many cancers. This can be found at www.TryVivixNow.com There is another Shaklee product called Nutraferon developed by the Dr. who invented Interferon for the medical community but for children with underdeveloped immune systems it may not be the best...Great for older ones and adults. Nutraferon can be found under www.TryShakleeNow.com under immune. And last but not least there is a naturapath in Mt. Horeb WI and he can do energetic treatments remotely. I would not hesitate to go to this man. His name is Jim Walters and his number ###-###-####. He can actually test the child for various products that be specific for them. I hope this helps. C.

PS My brother unfortunately did hyper baric which no one told him was contraindicated for brain cancer...it makes new blood vessels grow for the cancer.

Oh, my heart breaks for these children, their families, and for all those that are touched with brain cancer. My father died at 52 years of age from a GBM (after an 18 month battle and two aggressive experimental surgeries), and although I was 25 years old at the time, it was comforting to know that my dad and our family were being held in people's prayers and their thoughts. It sounds like you are there for them and that is the best thing at this time.

Make it a point to call once a week just to touch base. My mom had (very good) friends that became "strangers" during this time, and that was difficult to deal with.

You might want to get on to the National Brain Tumor Foundation's website (www.braintumor.org) for additional information. I organized an Angel Adventure in Denver years ago in memory of my Dad...you might want to get involved with the committee or commit to walk at the annual event.

Just keep doing what you're doing...provide support, your time, an ear, a shoulder, tissues, and most of all your heart.

I'm so sorry to hear this. I love the ideas that the pp said, so I won't repeat those. Prayer, lots and lots of prayer. I also would help do what I could to give them as much time together as a family, like yard work, cleaning, errands, GROCERY SHOPPING!, meal preparation, laundry, maybe plan a family getaway, if possible. Maybe see if you could host a party in their honor, make sure it is happy and upbeat, celebrating their life and show them all of the love they have around them. Maybe you could make a schedule for the things above and schedule other loved ones to help on different days. Seeing everyone that they love together cherishing the time they have left would be reaffirming. You could give them the schedule that everyone has volunteered for as a gift at the party, so everyone could share in it. Anything to take some extra weight off mom, so she can just enjoy what time she has left.
Offering to drive the family to dr appointments, or taking other children to their events and cheering for them, while mom and dad are with the other child at the dr might help too. If there are other children in the family, they will need support too, though they will want to be with their sibling when they can, even if they don't know what is going on.
I know that if I was in this spot, I would let everything fall down around me as long as I got to play with/cuddle with my baby for one more hour.
I wish you and the families the best and all of you will be in my prayers.
I almost forgot. You could let them know about http://www.carepages.com/
If they don't already know. There are a lot of services availible to the family, and they can keep a diary/blog to keep family and friends updated without having to call everyone. It sends everyone an email when something new is posted on the site.

As a mom who had a son with cancer (thank you, God...he is now in remission) I know that a lot of people offered...then waited to hear from me. And then, since I never thought about all that resource in the times I really needed it, I never called, or when I did, the results were half-hearted at best. Don't just offer. DO. Schedule a night a week to cook for them. When you bring the meal, sometimes you could ask to take their car to fill it up with gas...while you're out with it, get it washed and vacuumed. (This is ESPECIALLY helpful if their appointments are a fair drive away.) If you live close to the hospital, grab a parking card or two to give them (make sure it's a multiple use card, instead of a timed card). And oh, when a child is actually IN the hospital for a few days, take a few meals up for the mother or father that's staying there with him or her. While you're there, offer to do their laundry (at Texas Children's, there are free laundry facilities on the sixteenth floor of the inpatient building, just bring the detergent and softener) so that the parent won't have to. Those were our biggest unmet needs at the time. If you can't do it all yourself, get a couple of other women to help you, and rotate. Just make sure it gets done. You can't imagine how much help those simple things would be. Oh, and don't forget to pray. Never stop praying.

Most importantly, don't stop after a month. The needs of that family will be just as urgent at six months in, or a year in, as they are in these first frantic months. Now, everyone is offering. Be there to help when no one else remembers or thinks about it anymore.

God bless the little ones.

Take lots and lots of pictures if you can. The parents don't always have time but just try to preserve some memories while they're busy trying to get on with their daily lives. I would make a beautiful scrapbook album for them.

T. -

I know this is a late response.

It would be wonderful to ask your 6 year old for stories about he and his friend and write them down. If you know the parents of any other friends get their stories as well as copies of pictures.

A scrapbook for both the parents and your child would be a wonderful gift. You could leave blank pages for additional memories to be added.

Encourage your children and other friends to continue to visit within the limits set out as well.

I think one of the nicest things to do is to get them a gift certificate to get some fun family portraits done. I am a photographer and I know that many of us give discounts on session fees and/or prints for those families aflicted with cancer.

Please let me know if I can help..

C. Hill

my website is www dot clairehillphotography dot com.

Hi T.,

I agree with what alot of the ladies have said. My best friend's little boy was diagnosed with ALL Leukemia in 2006. He just turned 10 and praise God, he is in remission but still has to undergo an aggressive treatment plan for at least another year and a half.

When we first found out about the diagnosis, I too, felt helpless. I was in Houston and she was in Dallas. What I did was contact a friend of hers in Dallas and asked her if she would organize a meal schedule for the family. And as one person said, someone came and cleaned the house, took care of her other 2 boys while she was at the hospital, etc.
We also did a "gift card" drive. We contacted as many friends and family as we could via email, phone, etc. and collected TONS of gift cards from grocery stores, gas, restaurants, etc. That helped tremendously as the financial strain was more than you can imagine.
I think you've received lots of great ideas and of course one of the biggest is prayer. I also sent out a prayer request to everyone I knew to pray for this little boy and his family. God is good and I know he'll protect these children.

God Bless~
M., Tomball, TX

the best thing you can do is be an ear to listen and a shoulder to cry on and spend all that time you can with them to make all the memories you can so that your little ones have something to remember and so that their families have the memories of the fun times to look back on..all of you guys will be in my thoughts and prayers...take lots of pictures and make a scrapbook of things that happen

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