DS just diagnosed with leukemia

trixiejo

Hello, I haven't posted on TB since I was preg with DS#2 in the Fall. I'm not sure if this is even the right forum to post my questions/discussions but I couldn't find anywhere else that seemed right.

DS#1 just turned 2 in December and was diagnosed with ALL (leukemia) in January. It has been a rough few months- with his symptoms starting, progressing & then getting the diagnosis. His symptoms began in September, the same month that DS#2 was born & we bought & moved into a new home.

 We attributed some of his symptoms to the new house & new baby brother so I have some guilt about not knowing he was really sick.

 Are there any other parents here who have kids with leukemia/ALL or other cancer?  TIA, Lisa

soontobeahigh

I personally don't have any experience with leukemia, but I wanted to tell you that you are welcome to post here.

My DD has Down syndrome and kids with Ds are at a higher risk to develop leukemia. Have you checked out babycenter.com? They have so many specialty boards you might find one there too that has a ton of support.

Please keep us updated about your little boy.

Justinlove

I don't have personal experience with my own child, but I did have a student 3 years ago who was diagnosed while in my class.  His only symptoms were leg pain and a constant low grade fever. He was as rambunctious as ever in class prior to the diagnosis.   It came as a complete shock to all.

He is now in remission (since June) and is doing GREAT!  He had rough times and the early treatments were the worst.  One of the things that him mom (who I am close to) really benefited from was meeting other parents in her situation.  We all know that feeling that noone can really understand how it feels unless you are literally in the same shoes.

She also set up a caringbridge site to keep people updated--so she wouldn't have to repeat the same good/bad news 1000 times.

malcivar

Hi there.  I don't have any experience with a child of mine having Leukemia but my cousin's son is less than a year away from being considered "in the clear".  It was a rough road but all the therapies and hard times were worth it and he's a happy pre-teen right now.  So I can't offer much in the way of advice but I can tell you that there is hope, my lil cuz is walking proof!

trixiejo

Thank you for your support & recommendations. I do want to find a support group of moms/parents who are going through similar challenges. We did set up a Caring Bridge website so friends & family can follow our journey. I'll check out babycenter.com - I didn't know about that one. Thanks again

galway

Hi.  Sorry to hear about your son.  My then-14 month old son was diagnosed with neuroblastoma (cancer of the peripheral nerves) in August so I know how terrifying a diagnosis like this can be.  I almost burst into tears during our first clinic visit when they called his name - and that was only to get his vitals taken.  What kind of treatment is your son getting? 

 I am on a list serve through acor.org which allows parents of children with particular cancers to connect.  I've found it to be helpful.

I know a lot people set up pages on facebook for their kids too - you might be able to find others in similar situations that way. 

I would also ask your oncologist or nurse practitioner about support groups at the hospital. I'm sure they'd know any in the area.... 

I hope your son is off treatment and in remission soon.

suzymarie

Welcome to the board.  no cancer here (both mine have a genetic condition and DS has global delays) but anyone is welcome to join the club that no one wants to have to join! 

Onomatopoeia

No experience, I just want to wish you all best, and your son a speedy recovery! 

trixiejo

Galway, I completely understand about losing it in the doctor's office. It takes all my strength not to cry when we go for his weekly checks & I see little kids walking about with no hair Levi isn't at that point yet but the doctors tell me he'll reach that point during his 2nd phase of chemo.

As far as his treatment goes - he's still in Induction or Phase 1. He gets oral steroids twice daily at home (along with other supporting oral meds.) We go to an outpatient treatment facility weekly for IV Vincristine (chemo - they inject this into his port) Occasionally he goes in for general anesthesia so they can do a spinal, check his spinal fluid for leukemia cells & inject Methotraxate (chemo) directly into the spinal fluid. He's due for his 2nd bone marrow biopsy in about 2 weeks. Depending on how he responds to this 1st month of treatment they will determine how his Phase 2 will be managed.

Is your son going through a similar treatment or is it completely different? I must admit I don't know anything about neuroblastoma. Thanks for the acor.org suggestion - I'll check it out. I hope your son is doing well. No one ever wants to hear that their kid has cancer but I can't even imagine it happening at 14 months - how scary.

Thanks for your reply & support

 

 

galway

hi again.  sorry for the late response.  I hope your son is handling his treatment well - that's so much for the poor little guy.  I hope his bone marrow biopsy brings you positive news!

My son's tumor was in his chest near his spine and was detected incidentally on MRI.  He had surgery to remove it and the pathology came back as neuroblastoma.  He then had a bone scan and bone marrow biopsy that indicated it had not spread, thankfully.  So right now he requires no further treatment.  He has MRIs every 3 months to make sure nothing has come back.

I'd love to hear how your son is doing so please post updates here!