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Anaplastic Large Cell Lymphoma (ALCL)

Anaplastic Large Cell Lymphoma (ALCL)

Posted by Planner_Dawn on Aug 7, 2020 8:29 pm

Hi all!

I'm Dawn and mom to Ollie who is 8 and was diagnosed with Anaplastic Large Cell Lymphoma (ALCL) ALK Positive in November 2019. We live in Ottawa, but are currently in Toronto where our son had a stem cell transplant 18 days ago. 

It started as a small mark on his neck and belly like a mosquito bite last summer. The neck one grew into a blister and two pediatricians thought it was a bacterial infection. When antibiotics didn't fix it we got referred to CHEO.

There he had every test imaginable. They thought it was cat scratch disease, Tuberculosis or a relative of it, glandular, a cyst, etc. Biopsy on November 11 finally confirmed it was lymphoma. 

His journey has been so difficult these last 9 months. Although he had 5 spots on his body, the systemic cancer was gone by the end of round two of chemo. In January he got lymphoma in his cerebral spinal fluid (they thought he had meningitis for 7 days as he had fever and the worst headache, back and neck pain imaginable) and that's been the greatest challenge. It caused him to go blind (permanently), landed him in the ICU for 8 days with SIADH which caused seizures, and did two more harsher rounds of chemo to get into remission. Next he needed a stem cell transplant, but because of COVID we couldn't use the three perfect matches on the international stem cell registry. His then 11 year old sister became his haplo match. In March we came to Sick Kids Hospital to get the transplant. His sister made her donation and he relapsed in his central nervous system before he could get the transplant.

We tried Ceretinib and that did nothing for him. So back to Ottawa to take Lorlatinib and 13 sessions of radiation on his brain and spine. Back into remission and back to Toronto. 6 sessions of total body radiation over three days, two days of chemo before, stem cell transplant, two days of chemo after and we're on day +18 post stem cell transplant with early signs of grafting! 😃

I am now part of various international forums and we have created one on Facebook for ALCL Pediatric. We know there are more families out there, but the data is not giving a complete picture and there's no standardized treatment for relapses. I want to change that. If your child has or had ALCL, I'd appreciate connecting with you.

Please follow my blog and feel free to reach out.

http://olliesbump.blogspot.com/

Thanks in advance!

Dawn

 

Re: Anaplastic Large Cell Lymphoma (ALCL)

Posted by ashcon on Aug 8, 2020 9:45 pm

Planner_Dawn
Dawn, 
Wow,  what Ollie has gone through is truly incredible. 
It is only matched by your amazing advocacy work and kind reach-out to help support others. 
I hope you hear from others via this site. 
My heart and wishes are with you, Ollie, and your whole family. 
---- "Nothing ever becomes real till it is experienced." ----

Re: Anaplastic Large Cell Lymphoma (ALCL)

Posted by Trillium on Aug 8, 2020 10:32 pm

Planner_Dawn‍ 

You and Ollie have been through so much, Dawn. Thanks for sharing his story here. I hope you find all the others in a similar situation to Ollie and that you are able to make the changes you want so that others can have a less difficult time of it. I can only imagine how difficult this has been with such a young son. Your family is an inspiration for many!! I look forward to reading your blog.

Wishing Ollie the best in his recovery and warmest of hugs to you and Ollie!
“Every day I wake up and decide today I’m going to love my life.” Carrie Hamilton

Re: Anaplastic Large Cell Lymphoma (ALCL)

Posted by Planner_Dawn on Aug 12, 2020 10:36 am

Thanks for the kind messages. I am having some formatting issues trying to import my pre-existing blog, butt hope we can work that out. 

Hope you are well.

Dawn

Re: Anaplastic Large Cell Lymphoma (ALCL)

Posted by Cynthia Mac on Aug 16, 2020 11:48 am

Hi, Planner_Dawn‍ ,  I just ready your story about Ollie this morning, and want to reach out to you. It does sound as though you’re navigating this well, but if there’s anything I can help with, reach out.  I was caregiver for my late father when he had lung cancer.

For now, I’ll just leave the reminder for self care with you. I know that can be hard when you’re also the mom, but it really is imprortant.
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: Anaplastic Large Cell Lymphoma (ALCL)

Posted by Planner_Dawn on Aug 16, 2020 7:15 pm

Many thanks, Cynthia. It isn't always easy to do self care when you're the mama, but I certainly try. 

Thanks for your kind words and kind offer.