Joey Gilbertson

After an extended break from FB we are back (kind of) with a long overdue update on Joey. In November Joey celebrated two years off treatment. Most days we don’t think about cancer and Joey says sometimes he even forgets 🤪 It blows my mind because I never thought that the day would come when we didn’t have The Fear.

Joey sees his oncologist every three months now for bloodwork and a check up. We received his roadmap for lifelong care as well as the detailed treatment he received. This will help Joey as an adult manage his risks, identify potential issues, and help doctors to identify possible causes. It was a sobering reminder that the drugs used to cure him are the very things that could hurt him in the future.

Joey continues to flourish! His EKG and echocardiogram were both normal, indicating that his heart was not damaged from the chemo. We are still waiting the results of his bone density scan. We will not be surprised to see a slightly abnormal finding here. Joey was on so many steroids and had been diagnosed with osteopenia during treatment. Remember all those foot fractures? Joey will be entering physical therapy again on the advice of his doctors. This is due to weak muscles/tendons from chemo, his slightly different childhood experience, combined with growth. We were told to expect periodic bouts of physical therapy until he stops growing. Wondering when that will be... he measured in at 5’5” this appointment!

I’ve had people reach out in concern for Joey because of the Covid19. I’ve also been getting notices from FB about increased traffic on Joeys page, so I assume it’s for the same reason. We are concerned. While Joey technically has the immune system of any other child we know that he responds differently to illness. He tends to get sick more often and with a greater severity. Joey is currently fighting a virus and his WBC is below the normal range. This is not ideal conditions for his immune system to try and fight anything else. We have started behaving in a manner that we did while he was on treatment: stay home as much as possible, limit entry into our home, good hygiene, and an abundance of cautionary measures that some people think is too much. A gentle reminder that when it’s your child who could become gravely sick by living a normal life it’s never too much.

Thank you all for the love and support you have shown Joey and our entire family. It brings us so much happiness to know how many people care for him!!

Feeling very thankful!! Joey has officially been one year off treatment and is still cancer free! We hope that you are feeling as blessed as we are!!

The preliminary test results came back. Joey only had one white blood cell so we are going to call this NOT A RELAPSE!!! He had three vials of spinal fluid removed so they could test for other infections, all of which came back normal. That’s a lot of CSF so Joey has been resting at home with a headache and a backache. Hoping he is feeling much better tomorrow!

While we are still waiting for the more accurate test results his oncologist feels it safe to say his headaches and vision issues are not related to cancer or it’s treatment. What this means is that we will have to find a pediatric opthalmologist who has experience in what we are seeing in Joeys eyes. We are still in the early stages in this new chapter for Joey but... what a relief!!
Thank you for all of your thoughts and prayers!!!

Last week we discussed the results of Joey’s MRI with his oncologist. Everything looked normal in the images. However, an MRI isn’t 100% accurate for leukemia. His oncologist feels strongly that he hasn’t relapsed but wants to definitively lay this to rest. The only way to do that is through a lumbar puncture to test his spinal fluid.

So today we found ourselves in a familiar place, one we thought we wouldn’t be visiting again. As usual, the staff was great and Joey did amazing!! We should get his results tonight or tomorrow. Again, we don’t expect bad news but it’s nerve wracking nonetheless!!

If you could - please send a prayer and good thoughts Joey’s way! The last few months he’s been experiencing headaches, some vision issues, and has developed an area of inflammation in his eye. He has seen a few specialists and they can’t quite figure out what’s going on. Joey earned an MRI to see if they could get a clearer picture of what’s in there. We always knew he was special but now we are learning just how much!! It’s not everyday when you can stump so many doctors at once! Hoping to get some answers for our Moose!!

It’s hard to believe it’s been so long since we posted on Joey’s page!! Joey is about to turn 13, and like most teens, has requested a little more privacy in what we share on Facebook. However, today is Joey’s 4 year Cancerversary and I couldn’t let this day pass without giving everyone an update on how he is doing!!

Joey spent most of the last nine months regaining his strength. By the end of last school year he was fully participating in everything but PE. We were able to work with his school so that during his missed PE class he was putting in the hard work at physical therapy. Once he was cleared for regular exercise he started working with the amazing trainers at Movement Fitness Rockford. His trainers (you know who you are) have helped him make great strides in his strength, mobility, and dexterity. The effect this had on Joey’s self-esteem is priceless! He’s so proud of all that he’s accomplished in the gym and how that has transferred into his everyday life and PE this year. What a difference 6 months can make!!

Joey also enjoyed partnering with our community and Band-Aid to have another bandage drive. We were able to collect over 1,000 boxes of bandages for the kids at American Family Children’s Hospital. It makes a big difference in the lives of children who regularly get “poked” and we can’t thank you all enough for your help in making it a successful drive!!

Joey was excited to start 7th grade this year. He is growing so fast now that he’s off chemo. He’s currently 5’2” tall and loves saying he is taller than his mom. He continues to go for his monthly oncology check-ups and is sailing through this phase with flying colors! Every once in a while we are painfully reminded that this could all change in an instant. A fever, headache, and fatigue still produces anxiety in all of us. Today especially I think about this day four years ago and the months that followed… we could never have done it without the love, prayers, support, and help of so many people!!

On Thursday we got the best Christmas present we could hope for. Joey had his monthly follow up and his labs were absolutely normal!!!

Merry Christmas!!!

Today made it official.
The actual date was 11 November.
It's been complicated.
Today we celebrate and breathe.
Survivor!

Final week of chemo!!!!

Picked up Joey's very last bottle of chemo. The end is near!!!

Close your eyes and make a wish.... you deserve them all!!!

Hospital shenanigans with medical supplies from last weeks appt

The brain is not cooperating today

It is going to be a rough burst

Sometimes people ask, why do you choose to stay involved with childhood cancer after your days in the hospital are done? The answer is simple: You can't "unknow" childhood cancer. It becomes part of you. Each story, family and child you meet becomes ingrained in your heart. Each vision of a child tangled in IV lines while riding a tricycle down the hallway, or the sound of screams howling from behind a closed exam room door in the clinic hallway... as you walk your own child to their exam room, can't be pushed away. Each parent you find in the hospital break room crying silently to themselves to hide their pain from their child, can't be forgotten. Most importantly, the sadness from the final note from a family you love, telling the world that their child is no longer with them...you can't "unknow" those feelings of helplessness and grief.

-When we can help others, we heal too-

September is important because it gives us, childhood cancer families, the opportunity to let others peek inside our world, and ask for help in honor of the families we have met and supported through our own heartbreak.

Awareness negates isolation, and gives us the opportunity to help each other, by bringing others in.

-Awareness is an opportunity for new hope-

Three years of plumping. We loaded him up this morning in preparation for his FINAL lumbar puncture. Not eating for 6+ hours is hard on a growing Moose!

*technically it's August and I got a little ahead of myself for the date 😁

"Childhood Cancer Awareness Month Begins One Week From Today!"

Are You Ready To Go Gold?

For the past few years many across the world have worked so hard to help achieve our dream of seeing as much gold in September as there is pink in October.

With greater awareness, there will come much needed increases in funding and research that is desperately needed to help stop the monster that is childhood cancer.

Major League Baseball, NASCAR, Professional Soccer are stepping up this year in a big way to recognize September’s Childhood Cancer Awareness Month. (Also, rumor has it there may even be some gold on the fields of some NFL teams this year!)

Hundreds of buildings, bridges, and landmarks across the world will be lighting gold this September. Click on this link to see if some of these places are near you: https://www.facebook.com/thegoldworldproject/

You can all make a golden statement to help increase awareness. Dig in your basements and attics for golden holiday ribbons and ornaments and display them on your homes, cars, trees, and mailboxes. Do your part to turn the world gold for our kids!

“It all begins with awareness!”

#

Tony (Cole’s Dad)

Please Share:
Help increase Childhood Cancer Awareness:
"A Day of Yellow and Gold to Fight Childhood Cancer"
www.facebook.com/yellowandgoldforcole
The GOLD WORLD Project
https://www.facebook.com/thegoldworldproject