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My daughter, 7, was diagnosed with ALL on 4/3/09. We are looking for other families that are taking or have taken the pediatric cancer journey. We are in the consoldation phase right now and would love to talk to others that have been there. We know it's a long journey.
I am sure that you are still catching your breath going into consolidation. I would also talk to your social worker and ask them about support groups in your area. When you come out of induction and are working your way towards maintenance, you may find your daughter's counts going up and down which makes it hard to get out to meetings anyway. That happened to us - plus no family, living in the country which translated to longer commute time to the support group at our hospital, etc. The PAC2 group is on-line at least so when you can't get out, you can at least talk to people and not be so isolated. Plus you may find that other families are able to offer you the support that your non-cancer friends can't. Good luck!
my experiance with my daughters leukemia was a roller coaster,she was 8,she is 15 now and doing really well.stay positive!any questions feel free to ask anytime.Good luck
Right now we are in the middle of consolodation. As I look to the next school year, I am thinking about how to make it best work for my daughter. The county provides a homebound teacher who was great in helping her finish up this past year. She did go to school a bit after induction, but never for a full day...so as I look at 2nd grade for her, I want her to get to school when it makes sense (she loves school) and have homebound, too for when she's not up for it. Did your daughter get to school? How did you coordinate it all? Thanks!
Our daughter had a homebound teacher come to the house for kindergarten. Frankly, with all the chemo (delayed intensification was in October/November) she really wasn't able to concentrate. Plus, she had multiple infections with the port, rare but serious side effects - mainly from the IT methotrexate that left lesions on her brain, but the other chemos too. We won the lottery frequently! lol And because she was at the elementary school level, she would have been walking into a giant germ factory - I just couldn't do it. She was supposed to start school before Christmas but when the school announced a MRSA "issue" I held off. Then in the spring, there seemed to be continuous waves of illnesses and both clinic and school advised to hold off sending her. We spent enough time in the hospital and frankly, she was just more fragile than some of the other kids in treatment.
She then went to first grade this year. She was thrilled to be with her peers after being isolated for so long. She had a wonderful, experienced teacher who took everything in stride. While Fiona still missed 41+ days of school this year, she made so many strides, caught up and surpassed many of our goals for her. We and her teacher are so proud of all her hard work. It really motivated her to be with the other kids. Of course there were days that she didn't feel great or couldn't concentrate. You could tell when the chemo brain was bad by just looking at her handwriting. She accomplished wonderful things - all this while in the maintenance phase - and with the lesions.
Having said this, you will have to decide what is right for your child and your family. We have friends whose son NEVER stopped going to school and he was in first grade at diagnosis. The family chose not to have a port (which our doctor said wasn't an option) so he has avoided many of the port infections. (However he does have one more year to go and his veins are starting to have some issues...) He has always had his taps done in clinic without sedation. Don't get me wrong - he has gotten sick and had to stay home or be "in house." His teacher did come to the house when he was not able to attend - like homebound. [Note: my district did not allow for homebound unless she was out for 4+ days. By the time she hit the magic number, counting the weekends, she was usually back in school. Maybe your district will be more cooperative!] Nothing is perfect but their approach to dealing with their son's cancer has worked for them. We just have to make the decisions for our kids and try our best. Remember, you can try something and if it doesn't work, switch course. I would sit down and have a 504 written asap - but they probably won't do it until after school starts and 3 weeks of observation. Anyway, the 504 will allow you the leeway to try different things. The school should agree to it because it is not an IEP. You will need to get a letter from your doctor to get that ball rolling.
Best of luck!
Sherry
ps I don't know if it will help, but I blogged alot about this (and my frustrations) on her site, maybe if you go back and look the older entries, you might find something to help you? I apologize in advance - I'm a whiner! lol
www.caringbridge.org/visit/fionamonahan
My daughter, Anna, was diagnosed 3/2/2007 with pre-b cell ALL. She just finished treatment on May 9th.
So you are doing consolidation, which for us was 4 weekly LP's. I know those are tough. Watching your child get sedated is not fun, but the next part is much easier. I don't know what the protocol is now, but I think Anna had eight weeks of interim maintanence, which was a nice little break from the hard stuff.
Please let me know if you have any specific questions for me. Or you can just vent if you need to.
Bless you and your family.
Jenny Cumbie
Yes, I am counting down the two more weeks on consolidation. The days go by so slowly. But when it's time to get to the clinic again, it seems we were just there! Consolidation's been tough on Erin. She's been on ARA-C for the last two weeks. Interim maitenance will be another 8 weeks, then reinduction in the Fall for 8 weeks. She had a transfusion today of red blood, she had a few rough days leading up to today. She's feeling much better now. Did your daughter attend school while in treatment? Any tips on coordinating with school personel?
It's so great to hear stories of children OFF treatment, it's inspiring to us!
Thanks for all input.
Eileen Frederick
My son recently underwent liver transplant and we are currently debating on whether or not to send him to school this year. To date, he only has partial abdominal muscle closure. His skin is intact but 40 percent of his abdominal muscle is gone as they had to cut it out due to the tumor invading. This, plus, he still has to undergo more chemo and clinic appts, scans, labs, etc. I called our school district in Oklahoma and they were unwilling to work with us at all. They said unless we wanted to place him in remedial classes then there wasn't much they could do. His mental state has not been affected, he is a very bright young man and would be extremely bored in a remedial class; however, he does have physical limitations as well as missing many days of school. Can anyone give any suggestions on what we should do?
rhenry3,
It makes me sad to hear your school district is not willing to help your son. I live in Delaware and they bent over backwards to help us. I don't know if they have IP testing where you are at, but it helps to place childern with special needs where they need to be. I'm not talking about special ed classes, but chemo brain and smart kids who need extra time with tests.
My son dx at 16yrs went back to school in 11th grade and now wears an artifical leg (above the knee) and can't sit down for long periods of time, which the testing helped him to get up and walk around the back of the room during class to relieve the presure of sitting. I'm not sure if it's a national law but I believe I was told it's a state law here. I would talk to his teacher or social worker might have more info. I wish I could be more helpful.
Still Expecting Miracles for our childern,
Shauna
My son finished chemo for T-cell ALL in March this year. I also kept an online journal at www.caringbridge.org/visit/tobywilson I really feel like writing it all out was very theraputic for me! It also helped inform people who weren't close by. I would love to be a support of your bad days (good days too :) Sometimes you just really need to talk to someone who understands. In cases like ours, sympathy and empathy are significantly different. Good luck with everything...stay strong. You all will be in my prayers.
Wow, you are so right about the sympathy/empathy thing. I hadn't thought about it that way before but we have realized that conversations with cancer families are so different than with family/friends.
I just read some of Toby's caringbridge. He's a cutie. I have a son who is getting ready to turn 6 in a few weeks. My kids are all blond hair/blue eyed, too (it looks like yours are)
Thanks for reaching out - I'm sure I will use it. Right now we are just waiting for Erin's ANC is bounce up to be ready to start Interim Maintenance, should be this coming Monday (8/3). From what I understand, it's a little break. Fall will bring reinduction.yuck...but we will get through!
Erin's website is caringbridge.org/visit/ladybug7
We are in maintenance. My son was two, now three. Diagnosed on Sept. 7 2008. It is a day I will never forget. I thought I literally would die from a broken heart. There is no set way to act or grieve. This is my first time talking to anyone other than friends & family. For the first month, I couldn't even speak to the docs for crying so much. I knew I had to get myself together for my children, (and only you will know how to do it ). I also have a 6 yr old daughter. It was tearing her up seeing me like that. I have to believe that this journey we are all experiencing, will one day make us stronger people. I do know that I would not have said that 6 months ago. I wouldn't say it will get easier as time goes by, but you will begin to look at life so much differently. I no longer sweat the small things......you know, when someone cuts you off while driving on the highway, well I no longer "flip the bird" , I just smile and wave them over. You should see the shocked look on their face. ha ha One more thing, then I will stop. I was at a four way stop coming out of a store, and apparently I did something wrong, don't even know what it was, but this young man was just cussing up at storm at me. He looked so angry. You know, I didn't cuss back, I felt sorry for him that he had that much anger inside him. I pulled up next to him, I looked at him and told him, I wasn't sure what I did to upset him so much, but I was sorry, life is to short to carry so much anger. I thought he was going to cry, he apologized over and over. I would like to think that maybe that helped him in some way. Don't get me wrong, for the first few month after diagnosis, I was not kind at all. I was an angry, God blaming, person. I don't think I will ever stop questioning why my perfect son has to go through this. My best advise........Just stop, close your eyes, take a deep breath...... you will get there. Oh yea, go to your bedroom, lock the door, grab a pillow and scream and cry into it. Then give it a few good blows. After how ever long you need to do that, come out with a smile on your face and a look of confidence (for your child's sake) that everything will be OK!
My daughter was diagnosed with ALL on her 3rd birthday. She is now 14 and doing well. Your journey will be difficult over the next 2 years. The advice I give is to keep a binder/folder of the treatments your child receives along with the testing exams your child will get. You will want to keep this forever, it will help you a great deal when your child gets older and they continue to test them from any side effects that may occur in the future. This will especially if you change or lose your oncologist, it will be a time saver from unnecessary testing. Be prepared that your child will never be like any other child. Treatments will affect them in some way. My daughter suffers from low platelets and she has terrible vision. In time everything will calm down, but to this day I continue to pray that she remain in remission.
Hi,my daughter went to school whenever it was possiable the school worked very well with me,having friends is very important and be isolated as much as they are at times going to school was important to her,half days was good if her counts were too low she be home and a teacher would come in.it worked out great yes there were times where i made the desicion no school this week but she did go whever possiable.
My son was diagnosed with T-cell ALL in April 2008. Its been a tough 16 months. He is now in long term maintenance and its slowly been better. He was out of school for 10 months, and only went part-time the rest of this past year. We hope that he is strong enough to attend a full day this year. Its a long road, but I have found that I just take it one week at a time. Actually, for a awhile I was taking it one appointment at a time. There is a group that is just for kids with ALL, we are very active, with a lot of people who are off of treatment (OT) and more who are in the throes of it. Its found at www.all-kids.org This group was able to answer when my son had weird symptoms, or else something else happened. It has been my lifesaver. Check us out.
Nancy, mom to Dale, 13, DX with high risk T-cell ALL on April 16, 2008 now in LTM! ( www.carepages.com at daletall)
My daughter was diagnosed with ALL on 4/12/09. She has pre-B ALL. We are waiting for her ANC to go up so she can start interim maintenance...hopefully, this Wed.
It been a long road especially since I just had a new baby 5 days before Gia was diagnosed. She was 22-months at diagnosis. We know what you are going through.
My 7 yr old son was diagnosed with T-cell ALL on 7/6/09. This is all new to us. We finished Induction on Wednesday and are meeting with the doctors on Tuesday to find out what's next.
Wow you have your hands full - I hope you have lots of help! We are one week into Interim Maintenance. We had a 3 week delay because Erin's ANC had bottomed out...it doesn't get any lower than zero. They were long weeks because you just want to keep moving forward and it was very slow to get close to the 750 we needed. We were told that the start of Interim Maintenance will mark the end of her treatment in two years. We were given a 8/3/2011 end of treatment date. My daughter is 7 and is doing really well right now.
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