Pink Heals Bergen County NJ

07/04/2024

Covid, it might may have slowed Pink Heals Bergen County NJ down a bit but it did nothing to hinder cancer or any of the other debilitating illnesses that impact and often steal our loved ones from us.

That's why we're getting the gang back together again!

We can't think of a better day to let ya'll know about it.

Happy 4th of July family!

Stay tuned for some exciting news from your friends in pink!!!

08/30/2022

We used to think that superheros were make believe, the product of overactive Hollywood imaginations.

Then we met Cole.

While small in stature, his light was always the brightest in the room.

His courage inspires so many of us to dig deeper as we travel our own paths and wage our own personal battles.

This past Sunday, we celebrated Cole's life and gave him a send-off worthy of the hero he is.

The church was packed to capacity, it's parking lot filled with emergency vehicles from municipalities far and wide as it’s pews were occupied by teary eyed folks who would be considered heroes by most themselves.

Emily Potter famously said, "Heroes never die. They live on in the hearts and minds of those who would follow in their footsteps".

Cole will live forever through the beautiful memories we share of him and the actions of the many heroes he's inspired to lean deeper into serving others.

Rest easy Cole, we've got the watch from here brother.

08/26/2022

08/22/2022

Cole was a true HERO and true inspiration to everyone around him. We are lucky to have known him for the time that we did. Our love and prayers are with you.

07/02/2021

04/09/2021

Hospital Day 41.

Cole has been feeling ok overall. He had some pretty significant bouts of abdominal pain that seems to have improved over the last two days. The docs couldn't really pinpoint what was causing it so it was a lot of trying different things. Very stressful.
His "lazy eye" has already improved significantly. Optimology determined that it was most likely the muscles being out of whack from the sedation.
Now on to the big stuff. Cole had his cancer scan today. It's crazy to think that cancer has not been at the forefront of our thoughts for awhile. The results, overall, were good. We knew he had one spot on his skull. Now he has 3. 2 are so close together that it's actually considered one area of disease. So 3 is more than 1 but we choose to look at the big picture: it's all in the skull bone. It's not in the brain and it didn't spread to the rest of the body as it's done in the past. By next Tuesday, he will restart the gene inhibitor. That should help. The plan after that isn't set but they may do radiation to the skull as opposed to MIBG therapy. Radiation doesn't wipe the immune system and we all know that his needs a break.
Now back to the esophagus. Cole has a stricture. Basically, in beginning to heal, at least the top of the esophagus closed up to the point that it's opening is significantly tiny. We are talking, can't take a sip of water and swallow tiny. This has been a tough thing to wrap our heads around but a plan is in place. Tomorrow, in addition to getting his old medi port out and a new one in, Cole will get an NG tube. Many people reading this have seen them before. A small tube that comes out of the nose (taped to the face) while the rest goes down through the esophagus. Normally, NG tubes are used for feeding kids. We have the G-tube for that though. GI docs decided that this would just go in for a week to two weeks to keep things open in there. After that, they will dilate the esophagus every few weeks, a little at a time, until it's wide enough that there are no eating restrictions. We'll start small when he can with drinking fluids and Shakes and such and then eventually he'll get back to no restrictions. This could be a very slow process over months. Not gonna be fun. At least most of this will be done out-patient and the dilation is not generally painful.
While our most recent news is mixed at best we are just celebrating the more frequent moments that Cole is feeling good. He's playing more and starting to process what is going on with the eating and drinking. It looks like he will be able to get discharged once he needs fewer platelet transfusions. Right now he needs them daily so we aren't there yet.
Pray that tomorrow's procedures go well, platelets start coming back, and that we can get closer to going home...and then go donate blood...preferably platelets.

-ColesCrew

04/04/2021

Happy Easter from the good ol' boring oncology floor! After 23 days in the ICU we've finally moved back to a regular room. It's been a very interesting few days to say the least.
From a physical strength standpoint, Cole has been amazing. PT and OT have been working with him a little and he's progressing significantly every day. A goal a few days ago was for him to take a few steps which he did well with. Fast forward to 3am on Friday and he was doing squats next to the bed and then stood on one leg for about 20 seconds with only one hand against the bed for support. He stood and played with Steph for over an hour yesterday too. Not bad for a kid that was in bed for a month.
It's not all smooth sailing though. Cole had to be weened off of the sedation medications over a period of days. Not easy to do. At one point he was wide awake for 30 hours straight. For the most part he was comfortable though. He was pretty perky at times and had a Mickey Mouse Clubhouse marathon to help. He also went right back to cheating during our thumb wrestling matches.
During that 30 hour marathon Thursday into Friday it was noticed that Cole's left eye was pointing off to the left (outward) a little bit. Since it was a fairly sudden development, neurology got involved and he did a CT scan at 4am. Nothing was found on the scan. An MRI was done later in the day to make sure there's nothing scary causing it (blood clots and such). MRI was clear too. The docs are chalking it up to a "lazy eye" that can be addressed down the road. Steph and i are thinking that it might be from the medication withdrawal and hope that it corrects itself. This wouldn't be common, but nothing about Cole is. Time will tell.
While he was sedated for the MRI he was brought back down to the OR where GI tried another scope to see what's going on in the esophagus and stomach. Mixed results here : they didn't get very far with the scope. His esophagus is still pretty beat up down there. The upside is that it's still not swollen to the point of threatening his airway so he doesn't need breathing assistance. It seems like it's going to just take a lot of time and maybe a surgical procedure at some point for the esophagus to get itself in a good place. Patience is hard with this but we are going to need it. Nothing heals quickly. Cole will continue to get fed through his G-J tube. We are still waiting for the okay for him to sip water. That's his one big request that we can't help him with yet.
We don't know how much longer we will have to be here but we are greatful to be out of the ICU and off of so many monitors.
-ColesCrew

04/03/2021

STRENGTH OF AN EGG

Parents of children with cancer, or any serious condition,
are often referred to or viewed as having strength "like a rock". Although flattering, it isn't quite true. It is more like the strength of an egg. An egg, you ask? Yes!

If you'll think about it, you'll see my point. An egg has a polished, smooth outer appearance, with no cracks or weak spots visible. It seems almost inconceivable that the inside might not be so smooth or solid.

Most children, at some point, are shown the famous egg trick. An egg set at just the right angle can withstand enormous amounts of pressure and cannot be cracked or broken. Yet the same egg tapped gently at an even slightly different angle, will break. The contents, once so neatly concealed, will come spilling out. The no longer perfect shell will be crushed. It looks so fragile that it seems inconceivable that it ever held any strength.

A rock, on the other hand, is solid all the way through. To break it is almost impossible. If you succeed, you will find that there is nothing inside but more rock.

It takes a lot more than pure hardness to hold the hand of hope. Parents of children with cancer are not solid all the way through. We hurt, we fear, we cry, we hope. It takes a very careful balancing act to keep the shell from being shattered. "Balancing an egg" while running a household, going for chemotherapy appointments and hospital stays, keeping the family together, and holding on to the constantly unraveling ties of your sanity can be very tricky indeed. Occasionally, the angle will be off and the shell will break, shattering hope and all the neatly secured appearances of a truly fragile existence.

Unlike Humpty Dumpty though, parents of children with cancer will pick themselves up and put themselves back together again.

-Juliet Sexton
"I wrote this during my daughter Kyla's battle with a brain tumor which took her at age 4. To all of you getting up every day and putting yourself back together, I salute you. You are amazing."

03/30/2021

Happy 5th birthday Cole!

I'm going to say that on here but not to him. Not yet. 5th Birthdays shouldn't be celebrated in the hospital. We'll go big when he gets home.

There was a procedure scheduled for tomorrow where the surgery, GI, and ENT teams were going to go back in the esophagus and be more aggressive in clearing out what was stuck. That won't be necessary. Cole cleared it on his own!

They said that when they stopped the paralytic drugs a few days ago they would have to be careful that he didn't try to take out the breathing tube on his own. They had restraints ready in case he woke up too much and panicked. That wasn't necessary. Cole became pretty alert over the last few days, more than expected at times, and never panicked. In his semi-sedated state, he seemed to understand that the tubes were helping him. He only lifted his arms to stretch them out or reach for our hands to hold. The second part of that...what an amazing feeling.

The doctors, pretty much all of them, said that even with clearing the esophagus, it was probably going to be too inflamed to take the breathing tube out. It was going to be awhile until it wasn't pressing on his airway. Pretty much telling us that the ventilator would be the for awhile. A tracheostomy was talked about. Not to brag, but we were betting on them being wrong. Guess who was right?

Cole immediately started to ween himself off of the ventilator on his own. They kept dropping the pressure on it to the point that he was taking most of his breathes on his own and needing little to no oxygen while he did it.

Cole is off the ventilator today! The breathing tube is out. Our little warrior is talking again. God is great!

Back in October, the doctors at Sloan Kettering gave us treatment options but their demeanor gave us little hope. They underestimated Cole McKeon. 90% of his disease is gone. His genetic amplifications continue to show no signs of being present, even after stopping the meds for it. Prayers and an amazing doctor jumped in and let Cole do what he do best : fight.

We have a ways to go. He's has to build himself back up after being in bed for a month. He has more disease to beat and then has to keep it away. Cancer or Cole. Guess who we are betting on?

Don't underestimate Cole McKeon. Our son. Our warrior. Our 5 year old.



Pic is pre-hospital.

03/25/2021

Day 13 on the ventilator. Day 25 in the hospital. Cole has remained relatively stable throughout all of this and that's been the most important thing.
This morning Cole was brought back down to the O.R. where he was met by doctors from : surgery, interventional radiology, G.I., ENT, Pulmanology, and anesthesia. The fact that all of these doctors can get together at the same time is impressive. More importantly it has shown how unique of a case Cole is. The extent of the infection in his esophagus seems to be rare to them and everyone seems to want in on the procedures so that they can approach at every angle. The main goal of going down was so that surgery, along with interventional radiology could place a G-J Tube in his stomach. It's a tube with two tracks. One track goes into the stomach for nutrition (G-tube) The other goes into his lower intestine for medications (J-tube). They did the intestinal part to ensure there's nothing, especially his gene inhibitor (Crizotinib) going into his esophagus via reflux. Cole will have his "button" in his stomach for awhile but I don't think he's going to care in the least. He does so well with things connected /implanted on him.
Pulmanology reported that his lungs continue to be in relatively good shape. ENT reported that his airway had improved and while a little dinged up, in pretty good shape. They have not yet decided how much the swollen esophagus is still impacting his airway. This will be an important step to getting him off of the vent and extubated. G.I. went last and reported that the esophagus is still swollen but that it had improved since they last looked. There's some crap caught along the esophagus wall (maybe a combo of Mucasitis and stuff) that they couldn't clear but the hope is that will heal and clear itself at some point.
So overall, Cole has made some progress. It's still incredibly frustrating at this point because he is sedated and simply put, Steph and I just really miss talking with him and seeing him awake. There's no immediate plan going forward other than him getting fed through the G-J tube instead of IV nutrition. After that, all of the minds have to get together and decide when another scope would be or if he's at the point that he can start coming off of the ventilator and waking up. Time will tell.
Either way we will be here for the long haul. While I had previously hoped that he would be home for his birthday next Tuesday that hope has turned into the hope that he is awake for it. We may not even acknowledge that it's his birthday so he doesn't feel like he's missing anything. We'll see. Unfortunately, Home is a long term goal right now.
Thank you to all who continue to support us. We really really don't need anything but do know that people want to help. The grubhub /door dash gift cards have been very helpful lately. The fundraising for charity is just as important too. Prayers are the best though. They are getting us through.

Today's picture is of what was mobilized to go down to the OR this morning.

-Cole's Crew