childhood leukemia???

[mtemm]

a friend of mine called me today. she has a neighbor who I know thru playdates. neighbor's son is 3 and is a spitfire of a child. lots of energy, very healthy, all is well. except it is not, and out of the blue this week he's been diagnosed with leukemia (AML). we are all in a state of shock, I can't even imagine what the family is going thru right now. the only thing my friend and I know at this point is that the boy will be at children's hospital for at least 6 months.

my friend is watching their younger son when needed right now, and is organinzing dinners and such, that I can help her with. but we are both so lost, we have never known anyone with a child this sick. is there anything else we can do? has anybody known anyone who has had this and had a good outcome? we've both been doing searches online and its all so scary. any words of encouragement from someone who has been thru it or has known someone who has would be greatly appreciated. and any ideas of what else we can do for the family, as well.

 

[ilovepooh]

I'm sorry to hear about your friends son! That is so sad! My friend's son is going through chemotherapy for cancer. He was diagnosed at 18 months and is now 3.

His outlook at this point is good, but in the begining there was so much uncertainty that it was very difficult for them. There were so many "what if's". Being supportive and a shoulder to cry on is probably the most comforting thing she'll need to be strong for her son. Make sure she takes care of herself too.

**Maybe take turns going to the hospital to sit with her son, so she can take a shower and freshen up. My friend used to stay there day and night. She never left his side, and it was nice for her to get some fresh air and not worry about leaving her son alone. Hope this helps.

 

[Mrs.Milo]

One of our Dis family is going through this now with her grandson; check out her thread on the "caring & compassion thread": NHAnn and her grandson Avery @ 5 years old.

 

[aprilgail2]

I know a lot of kids that had childhood leukemia. Some turn out good, some not...my godson had it when he was 2 and was cured from leukemia but died of a related illness at 14...my friends daughter is now 12, she was about 7 when diagnosed and is just fine. My friend at works daughter was diagnosed when she was 3, she graduated from high school this year. My daughters friend had it at 1 year old and is now 7 and fine. I always remember my godsons Dr saying that "if they had to get a cancer that is the one to get"...sounded really crappy at the time but the cure rate is higher than many other cancers.
When my godson was in the hospital I used to go in on Friday mornings and stay until Sunday Afternoon so his mom could come home and spend time with her daughter. I also spent my time fundraising-it helped ME alot by feeling like I was doing SOMETHING not just sitting helplessly by....and he did need way more money than his mom had (his father was sick and died when my godson was 3).
My friend at work had a caring circle for a little boy in their school with Leukemia, they organized for a different person to cook dinners and bring them over each night so it was one less thing she had to worry about..they had SO many people doing it that each person only had to cook once every three months!!

 

[ZachnElli]

I believe this is what my neighbors daughter has. Are you sure it's 6 months and not 6 weeks in the hospital? That's how long my neighbor's daughter was in for, for her initial treatment. It is a 3 year long process. It has had it's ups and downs, but her overall prognosess is good. She has lost her hair, but thanks to Locks of Love she has a wig. She seems to prefer hats though. She has also swollen quite a bit and turned a 5 year old who was not worried at all about body image to being very worried about it. Lily (my little neighbor) was diagnosed last spring. They went to her kindergarten check up and just did normal blood tests and found it. They started chemo right away. She couldn't start school in the fall, but she is doing so well that she started this semester! And she got permission from school to wear hats. She's also been told, if you are going to get cancer, this is the one to get.

 

[Fishbone†]

My pastor's son was diagnosed with Leukemia 3 years ago at age 3. He is now 6 and cancer-free.

 

[barkley]

this same situation happened to some distant friends of ours. the little guy was about 7 and was always very healthy and active (they called him 'taz' cause he was such an active kid he reminded them of the tazmanian devil). about a year and a half ago he complained that he was tired all the time-so mom took him in for a check up and within 12 hours he was in the hospital with a diagnosis.

it's been a year and half of ups and downs-lots of treatments, and unfortunatly some no so great side effects of the treatments (minor stroke at one point ). but he's seems to be doing realy well-and has gotten approval for some experimental (in the u.s.-proven very successful outside) treatment that seems to be working wonders.

i know it was realy helpful for them when they were able to hook up with different support groups and resources. they esp. appreciated a program (kind of like ronald mcdonald house) that provided them with free housing near the hospital during his repeated short term stays. so helping them get info. on that may help. also-someone found out what fast foods and restaurants were within close proximity to the hospital the child was being treated at-got them to go menus and gift cards. that way if mom/dad needed to get out of the hospital for a meal they could-and when the med. staff allowed it and the little guy craved his fav. fast food items or item at a restaurant (i think he loved something at chilis or applebees) the parents had the menu in hand and the gift cards to cover it.

you might also want to set up an 'on call' list of people who can jump in and provide child care for the younger one when it's needed on short notice-it's hard when you have to take a child for repeated tests/appointments and have to bring along a younger sib (and with med appointments you run the risk that the younger one gets exposed to normal colds/viruses-which can cause big problems during certain points in the patient's treatment).

 

[Jillpie]

I'm sorry to hear this news, but they are doing amazing things these days. We spent a week at Children's 8 years ago with my youngest (we're also in E. Ma.) and we really didn't want any visitors as our son was just too sick, but the thing we loved the most was a homemade meal as soon as we got home. My sister brought that over and wow, that was just the nicest thing going. So if you could do something as simple as that every once in a while, that would be terrific. Just bring it over and surprise them, that will be the best.

 

[Brier Rose]

When my DD was going through her chemo and in and out of the hospital sooo much, one of the nicest things someone did for us was grocery shop.

It was so nice to not have that to worry about, and they really had a good mix of stuff in there, including things we could just grab and take to the hospital with us. Instead of coming home from the hospital and having to worry about no food in the house, we could just come home and crash cause it was already taken care of!

I've also always heard the whole if you have to have cancer....
They've come so far with the treatments now!

My DD's cancer is one you NEVER want to get...Malignant rhabdoid tumor. Matter of fact they gave her something like 3% survival. That was when she was 4 months old...she'll be 16 this Oct.!!! AND she has a few very minor problems, but no real lasting damage!

 

[ChrisnSteph]

My son was diagnosed with ALL (acute lymphoblastic leukemia) when he was 20 months old. He was very, very sick, and they didn't think they were going to get him into remission. Long story short, he finished the last of his treatments this past October, and he is now a healthy 5 year old boy. He's not out of the woods by any means, so he's still closely monitored and has monthly labs done to check for any signs of the cancer returning. Every little fever, cold or ache and pain he has causes me a lot of anxiety, because I'm always worried it's going to come back. The treatment for boys is a year longer then it is for girls. Matt spent months in the hospital, then again he was a higher risk patient and it took longer to knock him into remission. The treatment is long, and brutal. The chemo that kills the cancer also destroys your immune system, so you're vulnerable to every little thing. Your friends life is going to change for a couple of years, and here's my best advice as to how you can help:

Offer to sit and visit with her son every now and then so that she can get a break from the hospital. She's going to spend many, many days at the hospital and it can be very stressful and difficult for the family to deal with.

Take a meal over every now and then. If she has other children, offer to take watch them every now and then so that she can be at the hospital.

Send cards, little care packages and fun things to keep her son occupied. The staff tries their best, but the oncology unit can be pretty depressing at times.

Call her up and just ask her how he is doing, and just give her an ear to vent. She'll appreciate it.

 

[shortbun]

I'm so sorry your friends are going through this agony and fear. My son's best friend is a 2 time leukemia kid. He's 10. He is fierce and wild and smart and cute and sweet. He's my second son and I can not imagine the world without him. Both times he has battled the disease we have found different ways to help him and his family. The second time, they got an au pair and a housekeeper through the generosity of family. The grocery shopping we and other people were able to do for them was a big help. Having healthy choices right in your house and not relying on McDonald's is BIG in keeping things sane for the long haul. Having laundry done, beds made, lawn mowed: those things are small but priceless when spending time with your child and working are the only two things you are able to do.

 

[Judy from Boise]

actually AML is harder to beat than ALL, but his age is one thing going for him, kids younger than 6 do better statistically.

 

[aprilgail2]

I believe this is what my neighbors daughter has. Are you sure it's 6 months and not 6 weeks in the hospital? That's how long my neighbor's daughter was in for, for her initial treatment. It is a 3 year long process..

When my godson was in the first time it was 3 months, after that he was in and out for the next 2 1/2 years (that was the protocol then), when he went in after he relapsed a few years later he was in for a bone marrow transplant he was there for months again. He also had to stay at the ronald mcdonald house (and back then they charged 15.00 a night and you had to supply all your own food so it added up after awhile but I think they stopped charging now) because they didn't want him to be far from the hospital (we were an hour and 30 minute drive away but it is the best cancer hospital there is in NY!) One other thing we did to help out was a bone marrow donors drive to try to get someone that would match him for transplant and also to help out other families that were searching for donors, hopefully someone ended up matching someplace!
I missed the OP stating that it is AML and not ALL- ALL is the easier one to cure. I am not up on my treatment plans since my godsons was a long time ago but I remember when he got it they told us with AML they look for donors right away for a transplant, is that still how they do it??

 

[mtemm]

Are you sure it's 6 months and not 6 weeks in the hospital?

yes, they are hoping by his birthday (july) he'll be able to come home.

thank you all for your ideas and support. I will definitely be implementing many of them. going to the hospital is tough for me...I have 3 little ones at home right now, and dh is in his busy time at work, but I can definitely do dinners and put care packages together and grocery shop. we are trying to figure out how to go about doing a fundraiser.

 

[aprilgail2]

yes, they are hoping by his birthday (july) he'll be able to come home.

thank you all for your ideas and support. I will definitely be implementing many of them. going to the hospital is tough for me...I have 3 little ones at home right now, and dh is in his busy time at work, but I can definitely do dinners and put care packages together and grocery shop. we are trying to figure out how to go about doing a fundraiser.

We did car washes, garage sales where people donated everything to be sold, chinese auction, spagetti dinner at the school, bowling at night, flower sales at school on valentines day, and the best one, we put his picture and sotry in the local newspapers and a PO box and people just mailed checks in. We also had jars in local stores, we raised close to 75,000.

 

[Pop Daddy]

Anyhting you do is good, my first instinct would be to avoid the parents and child because this is just to terribale to comprehend. There isnt anyhting more unfair in the world then a child getting sick like this.

 

[hydster]

Our family is currently going through ALL with our 3 year old Nephew. He was diagnosed at the age of 21 months. He has had a lot of ups and downs, almost died in my sil's arms after a spinal tap and bone marrow check, has had extremely high blood pressure and has been in and out of the hospital numerous times in the last year and a half. It is a frightening time.

I know for my sil they suggested that while he was in the hospital for the first time they borrowed our steamer and steamed everything in their house to get it as germ free as possible.

He has his ups and downs but seems for the most part to be doing well. He has his hair back for now but when they start the next round of IV chemo with him he will lose it again. When they give him the steroids they make him crazy, puff him up huge and he is hungry all the time. Thankfully those are only given for 5 days at a time.

Give the family some time to adjust and then start figuring out ways to help them even if it's just a meal here or there!

 

[honeymom]

I lost my favorite cousin to leukemia when we were both 13. Back then, the mortality rate was very bad for the childhood leukemias. From what I understand now, it is completely the opposite. While still a very tough fight lying in store for the child, depending on the type of leukemia most childhood leukemias are survivable. My parents' neighbors daughter had leukemia when she was about 18 months old. She is a little older than my dd - about 12 years old now.

A friend of mine's son had a brain tumor a couple of years ago. I think the biggest thing is not to disappear and do be helpful. There were friends who couldn't bring themselves to pick up the phone and talk to her. They just didn't know what to say. I think it is fine to call and say that you heard what they are going through and that you wanted to give her your support and help in anyway possibe. I used to run a helping hands group and find that people often do want to talk and feel hurt when their friends disappear in these situations.

 

[krcit]

My best friends ds was diagnosed with ALL at 18 months. He is now almost 12 years old and completely healthy. It was a long, long road that htey went through. I remember how helpless I felt but I did what I could-cooking, calling, shopping. Another thing you could do is sign up to be a marrow donor. My friend and I actually went to a bone marrow drive for a little girl we had seen on a poster, the day the thank-you came in the mail was the day that her son was diagnosed. Very weird. Thankfully, Joey never needed a transplant but I am still on the list and would love to get the chance to help save a life. I will pray for your frie nds son