7 replies to this topic

[strongmom]

At 15 months old, my baby was diagnosed with 2 forms of cancers....CML and ALL. 8 long intense months of chemo, home and at the hospital, i am so happy to say he had a bone marrow transplant in March and is now in remission. But i am so scared to think it might come back. The hospital/doctors have lead me to believe  He is not cured until 3 years after transplant...do i continue to walk on glass and nails waiting?? Why so long? Is the cance really higher to come back within the 3 year window?? I try to accept there are side effects for the rest of his life...from chemo and TBI buts hard to grasp hes 2....theres hopefully so many long years to come

[HPL]

I am so sorry to hear what you have been through, but very encouraged that your baby is in remission. I don't know what to say, other than I have two young boys myself, 2 and 4. I have CML, and I told myself that I won't let that run my life, and I will bless every day I have with them and my wonderful wife. So maybe the same could work for you, none of us know what tomorrow brings, so we make the best out of today, and enjoy them. Because in 3-5 years when hopefully you look back and he is doing great, then you don't want to look at the precious times you missed because you were worrying about it coming back. Fear is a paralyzing force, overcome it by not letting it steal away your time.

Easier said than done, but don't let this run your life. Enjoy every moment with that precious baby, and do your most to make sure he has as normal childhood as possible. Best wishes !

Hans

[Trey]

There is nothing magic about 3 years.  Making it through the first 100 days is important to minimize risk of transplant-related complications.  After that, making it one year without relapse is important, then you can relax some more.  Each additional year that goes by after that without relapse means an ever decreasing chance that relapse will ever occur.  And the relapse statistics are better for infants than adults, because their cells are more adaptable than adults. This also helps regarding long term side effects for such a young child, since they can overcome them better than adults.

So generally, if there is no relapse in the first year, the odds of relapse decrease significantly.  Then after that, as the months roll by, the chances continue to drop even further.  In summary, the relapse odds do not remain "high" for three years and then drop, but rather the odds are dropping even now as the months continue to go by.

[Happycat]

Goodness!  I read your post and got a lump in my throat and tears in my eyes thinking about all that your poor baby has been through.  How difficult that must be to watch your child go through.  Then I saw your screen name and I thought "Yes, a strong mom indeed!"

I can offer no advice about what comes next - but, luckily, Trey's pretty knowledgeable on it.  I would also say Hans had some very wise advice on seizing the day and enjoying it without letting the fear get in the way.  Hold your son, enjoy him and have a wonderful life together.  I'll try to keep you both in my prayers.

Traci

[Susan61]

Hi:  You are a strongmom, and just keep that strength for the many years you will have with your baby. Trey explained it so good, like a lot of us do not know how to do.  I will keep you and your baby in my prayers, and may the Good Lord give him a full beautiful life ahead.

     I am sure your post made a lot of people stop and think, especially those of us who are up in age and have lived a full life that we are so fortunate to have survived our CML to this point.  Please let us know how your little one is progressing from his transplant.

Susan 61

[strongmom]

Thank you everyone. Liam was a rare case being so young with CML and because he had both CML and ALL. Last June I was telling new people i meet, yeah, i have 5{at the time} beauitful healthy children, and like that one month later he was diagnosed. Happen so quick, and i was pregnant with number 6 and now in the hospital with Lee not knowing what had happen or what was going on...i was dumb founded. How? Why? Hes a baby. But i have learned to deal with all of this, you contine to go everday with no choice, im just not sure how being so busy taking care of so many others, how much has sunk in. Im so scared to just break one day.How do i explain to him when hes older....this was caused by chemo, you have to do this because of TBI....worst of all to this day it breakes my heart and makes me cry,something me as his mother will NEVER be able to fix...he cant have children....hes 2...this is really something that will be delt with his whole life.....it makes me sad and afraid....as a mom you need to protect...but it seems so far out of my hands

[Trey]

It is out of your hands....and you don't know what such young cells might fix for themselves over time.  He may overcome everything.  You just don't know for certain that the outcome will be so bad for him.  "What do I expect now??", you asked -- expect that he will surprise you, that he will enjoy life, and that he will bring happiness to those who know him, because he will be stronger inside than most people.   He is alive, and you did the right things to make it so.

[SunNsand]

Hi, I also want to say I'm sorry your family has had to go through this. One thing I have learned from children is that they are so resilient, tough and seem to handle health issues better than their parents. Take it a day at a time and enjoy the moment.  Your family is in my thoughts & prayers.

Also, remember that he can have children. They may not be from him, but he can have a family so hang onto that thought.

SunNsand