Friday, August 2, 2013

Declan Update

A few weeks ago I blogged about Declan, which you can read here. He was a sad little lump, not feeling well in so many different ways, requiring lots and lots of appointments, and just kind of puzzling the medical community. The most troubling symptom was his collection of swollen lymph nodes - since the beginning of June they have been hanging around, growing, and multiplying. Our family doctor and a pediatrician both agreed they were too big, they didn't feel quite right, and were in too many locations for their comfort. It was time for a biopsy.

Today was a day we were eagerly anticipating yet dreading: pre-biopsy consultation day. We really wanted to know if we were facing lymphoma or if we could cross it off the list of possibilities. But even though we wanted answers, and knew that we were looking at lymphoma as a real possibility, when the call came that Declan had an appointment at CancerCare, I cried. It was very real and very scary all of a sudden.

So early this morning we headed off to CancerCare, which is sort of between Children's Hospital and Health Sciences Centre. I've accompanied my Mom to the adult CancerCare several times and I knew the staff that worked there was awesome. Still, I wasn't prepared for how amazing the Pediatric CancerCare centre would be.

 We had an early morning appointment and were one of the first families there. In fact, the only other kid there was about 13 so Declan had free reign of the amazing play room.  

Check it out.

A tree house inside. Awesome.

Super cool airplane

Their cozy coupes come with a gas pump. So funny.

"What does this do, Mommy?"

He totally didn't see that coming. See how far he jumped back? LOL

So many toys to choose from

Playing airport with Daddy

Before long, other kids started coming in. Some were with nervous parents and seemed to be there for the first time, like us. Some were obviously regulars. Kids and parents were greeted by name and with big hugs. The woman who worked in the play room knew all the kids and siblings - asked how their camping trip was last week, told them she found a new butterfly craft she knew they would love, challenged them to beat her high score on some game on the iPads she handed out. She told us if we needed to have a grown-up conversation with the doctor, Dec could hang out with her. She got kids busy painting and crafting. One little guy gave a doll an injection with a real needle, practice for a procedure he was going to get. We'd been there about an hour when a clown came in and started blowing bubbles for kids to chase. It was awesome.

There was so much love and laughter in that room, but it was really hard to see how many kids were there! Some were really, really sick. The older boy who was there when we got there was with his dad - who was crying. One little girl had only been in Canada 2 months, and her family said if they were still in their home country they wouldn't even know she had cancer. One little guy laid in his mom's lap, getting IV fluids and weakly trying to play Rescue Heroes with his little friend who was being tube-fed on the other side of the toys. One tiny baby was only 9 weeks old.

A 5 year old girl got all hooked up with a blood transfusion and came out sobbing. That was a hard moment for me. But not as hard as it was for her, so I quickly tried to focus on the walls of the room to keep myself from crying - that didn't really help. Different things in the room are named in memory of kids. A beautiful tribute, for sure, and an amazing gift for the kids that spend so much time there. But so, so sad.

Eventually it was our turn and Dec marched right in and hopped up on the exam table. He's an old pro at new doctors wanting to check out his lumps. We gave the doc (Hematology Fellow) the full history that we've repeated 6 or 7 times now, and she gave him a thorough exam. Then it was back to the waiting room while she consulted with the Hematologist. Finally we were brought back in and the news was great: Declan's swollen lymph nodes measured half the size they had been just 10 days ago! They are all smaller and feel fine, like boring old regular swollen lymph nodes. 


So the random, weird illnesses from the last 6 months have all been a virus, or a collection of viruses. The docs said they've tested him for all the big, common ones and haven't come up with anything. Maybe that's because sometimes a virus like Mono can hide in the bloodwork. Maybe that's because there are hundreds of viruses and we'll just never know which one it was. But the bottom line was this: it definitely was not lymphoma. 

We were so, so, so relieved. And I felt so, so, so guilty walking out of that room and through the amazing playroom full of amazing kids and families that did not get good news like we did. They seem like a big family, full of positive, brave, incredible people. But I was really relieved that today we were not joining their club.

Celebration lunch
Huge thank yous to all our friends and family members who have been supporting us through these last few months. Huge, huge respect to all the health care workers who dedicate their lives to kids who have cancer. Huge, huge, huge hugs to all the families who are regular visitors to the amazing playroom. You are all incredible. xoxo


Julie Biljardt said...

Wow! What a relief. Scary time for you all, and I'm so glad for you how it turned out. Hugs!

Amanda said...

Gah this made me cry again. So so grateful you aren't a part of that club. Healthy kids are nothing to be taken for granted.

hugs and love and gluten to you, my friend.

Violet said...

Wonderful story! So glad that he is not seriously ill and on his way to recovery.

Jennifer Wald said...

I am ugly crying. I am so relieved Declan is okay but reading about all the other children broke my heart and highlighted how easily he could have been one of them. We have so little control over most health issues but if I've learned anything in the last 7 years; it is that we have control over how we live our lives, the kindness we show others, the time we put into our relationships and the gratitude we show for all we are given. I am so glad you were able to get the 'funk' out of CancerCares and take your little man home...where he belongs!

Kylie said...

I am sobbing at my desk at work now - I cannot tell you how relieved and happy I am for all you. And how much I wish I was closer. Give that little man the biggest hug you can and don't let go. We love you!