My son and his leukemia

[ChrisnSteph]

Is anyone here familiar with ALL (acute lymphoblastic leukemia)? My son was diagnosed in 2003 and is currently in remission. We are in the maintenance phase and he will be ending all treatment in October. Though it's an exciting time - soon no more chemo! - it's also a very nerve-wracking time. As we get nearer to the end, I'm getting paranoid about every little cough, fever, ache and pain. You always hear the stories about the kids who fall out of remission just before the end of their treatment, or the ones who fall out just after they stop treatment. Matt is a little bit of a higher risk patient, and I'm so afraid that's going to happen to him. If he falls out of remission, he'll have to start his treatment all over again - another 3 years of chemo. Is this just a normal thing us cancer moms (and dads) go through? I should be feeling relieved, but instead the closer I get to the end, the more worried about everything I get. He's been running a low grade fever for almost a week, and the antibiotic he was prescribed hasn't worked. We are going to see the doctor today to see if it might be his ears. Fevers aren't normally a huge deal for most kids, but for Matt...I'm just so worried!

 

[Miss Jasmine]

This isn't something I have dealt with, so I can't offer advice. I can offer a and some prayers though. I hope that Matt will never need any more treatments ever again!

 

[BibbidiBobbidiBOO]

I had no idea you had a son with leukemia. Does he have a caringbridge site? I know a lot of moms and dads keep in touch with others through these sites. I don't have firsthand knowledge, but have read a lot on these sites. Will keep you all in my prayers.

 

[ZachnElli]

I don't know, just wanted to let you know he's in my prayers! My neighbor's little girl started chemo for ALL in April, scary stuff.

 

[lulugirl]

I'm sorry I can't offer any advice, but I will keep your family in my prayers.

 

[Lisa loves Pooh]

Good thoughts for your son that he makes it safely to remission!


While not familiar with the different leukemias--I did do Team in Training and was educated on the many services that the Leukemia Lymphoma Society offers and it is really a wonderful organization.

You may consider looking into your local chapter if you have not done so already.

I'm not familiar with where you live--but here is the chapter map for california: LLS California link You can zero in on the chapter closest to you.

They also offer family support groups where you can meet with parents who are in your shoes or who was in your shoes.
Link for family support groups:
family support group link

They do offer other benefits as well.

 

[Hillbeans]

Stephanie, I do not have any experience with ALL, and I can't imagine what you and Matt have been through - 3 years of Chemo - that sounds so long and your little boy must be one tough cookie.

My thoughts and prayers are with Matt and your family.

 

[mommaU4]

I also did not know you had been dealing with this. You are such a strong person and I believe your family is so lucky to have a mom like you.
I don't have any advice although my thoughts will be with you.

 

[Robinrs]

Oh, Stephanie, I had no idea, either!

Honey, it's a normal thing for children who are going through nothing like this.... you're a Mom... that equals WORRY!

God bless,

Robinrs

 

[ChrisnSteph]

Thanks everybody. We don't focus too much on the cancer because we want Matt to live as normal a life as possible. Earlier in his treatment when he was bald, it was pretty obvious that he had cancer, but now he looks so healthy you can't even tell. We adopted Matthew, and he was diagnosed before he was placed with us. Having lost two of my own sons, I think I'm just really paranoid that the worst is going to happen and he'll fall out of remission. They say if you have to get cancer, ALL is one of the better ones (high survival rate) but it's very scary nonetheless.

 

[Gwene65]

I don't have anything but prayers and hugs to offer you. You are a much stronger women then I could be given all that you have been through. I have much respect and admire you for that.

Just keep the positive thoughts and energy flowing. Try not to think of the worst. I know it is easier said then done but Matt will know when your sad, mad, etc.

 

[grimley1968]

Wow, that has to be an excruciating thing to go through. To think I paced for about 12 hours straight when my then 1.5 YO DD broke her arm! I can't imagine how I'd react to either of my DD's having something like this. I don't think you're over-reacting at all, given the circumstances. I'd be far more antsy than you sound like.

I'm so sorry for all you've been through, and I'm hoping and praying that Matt gets through this as easily as possible, for him and for you. I'm glad to read ALL has a relatively high survival rate, but I don't blame you at all for being paranoid. It's only natural, but hopefully unwarranted.

 

[goofy!]

First of all , you are one strong lady. I have read your lovely website tribute to your sons! And your support of Matt is amazing!

Next, for having to go through this.

I have no experience with cancer, but I do have a daughter with a serious heart defect. It was round the clock meds on a very tight schedule to keep her alive and lots of oxygen. And although not cancer, I did go through a worrisome period after she was "cured."

I do remember after the surgery that I actually worried more than before. I panicked that we were losing the meds, she was coming off oxygen, that we were losing the constant monitoring of the docs.

Although not the same worry as you have, I do remember I wanted to rejoice that the surgery went well, however, I was extremely worried that the patch would get infected, it would not hold, lungs would collapse, heart lining would become infected, etc.

So, I think as parents of ill kids, we want to rejoice when things are going well, but you also worry about what will happen when you stop all the stuff that was giving them life before. I think it is entirely normal.

You are in my prayers that Matt has a lifelong remission without any complications!

 

[MinnyGranny62]

Praying that everything is just fine with Matt. Always keeping you and yours in my prayers. Shirley

 

[ChrisnSteph]

I have no experience with cancer, but I do have a daughter with a serious heart defect. It was round the clock meds on a very tight schedule to keep her alive and lots of oxygen. And although not cancer, I did go through a worrisome period after she was "cured."

I do remember after the surgery that I actually worried more than before. I panicked that we were losing the meds, she was coming off oxygen, that we were losing the constant monitoring of the docs.

Although not the same worry as you have, I do remember I wanted to rejoice that the surgery went well, however, I was extremely worried that the patch would get infected, it would not hold, lungs would collapse, heart lining would become infected, etc.

So, I think as parents of ill kids, we want to rejoice when things are going well, but you also worry about what will happen when you stop all the stuff that was giving them life before. I think it is entirely normal.

You are in my prayers that Matt has a lifelong remission without any complications!

You hit every nail on the head. I feel like the meds, the constant monitoring my doctors, it's our crutch. And I'm afraid of what will happen when they take that crutch away.

Your dd, is she ok now? Sounds like you've been through a lot too!

 

[sweet angel]

I, too, hope your son is done with treatment. I can't even imagine what you've been through. To say your heart is huge and your spirit is strong is such an understatement.

Big, big hugs to you and your family.

 

[SillyMe]

I don't have any experience with it either. I just wanted to say as a mother that I can't even imagine what you've gone through. Stay strong. Prayers to Matt, you and your family.

 

[mytwotinks]

I think that what you are feeling is totally normal. Our first daughter was born with a tumor on her liver that almost took her from us. I think that I have a different feeling about the future than some of my friends do. I think that I know what can happen in a way that maybe I wouldn't have if Riley hadn't gone through what she did. There is always going to be that "maybe something is wrong" in the back of my head, but I think that I also have a better appreciation for what I have than some of my friends who take things for granted. I wish that we all hadn't had to go through it and I wish that Riley didn't have to go through the tests and meds that she will always have to put up with, but really 8 and a half years later it is so much of who we are that I can't even imagine it any other way.

A good friend of ours is now in remission and doing great! Good luck to Matt. I am sure that he'll be great!

 

[DISUNC]

Matt is in our prayers!

 

[Nancyg56]

Oh Stephanie, I don't have any advice, but I do have prayers for Matts complete recovery, and for your peace of mind.