Jocelyn & Childhood Cancer Awareness

I wanted to start this gofundme for my dear friend as her family is trying to navigate through this nightmare they are enduring.

 

Jocelyn is resting her little eyes as her parents make sure she is comfortable at home. I will keep all updates on here for people who want to keep up with what is going on.

 

Katelynn has said several times that she will make it her life's goal to raise awareness for childhood cancer. She recently said,

"I think it’s so very important to note that even though our journey is almost done; I will never stop spreading awareness. So maybe one day parents can stop going through this nightmare."

 

From this gofundme, my hopes are that money will go to the Ducharme family for whatever they need. It is no ones right to question, please keep that in mind. I KNOW Kate will take a portion and do what she can for childhood cancer awareness. So, during this time, I wanted to take over raising some money for her. Well, at least starting a platform to do so.

 

Thank you all <3

 

 

 

 

Jocelyn was diagnosed May 10th 2019 with a very rare, aggressive form of brain cancer, Atypical Teratoid Rhabdoid Tumor (ATRT). She was only 17 months old. Roughly a month before diagnosis she began vomiting daily and started becoming very lethargic and dazed much of the day. After being misdiagnosed with the flu for a month straight, she was finally given an MRI which showed the very large mass. The day after the tumor was discovered she underwent her first brain surgery. During this first surgery a shunt was placed to relieve built up spinal fluid as well taking a biopsy of the tumor. After it was confirmed to be ATRT she was sent into 2 rounds of high dose chemotherapy. Following these rounds she had her 2nd brain surgery to remove the mass. During the surgery Jocelyn suffered a small stroke which caused some weakness on her left side. Jocelyn made a full recovery after about 3 weeks. Following the surgery she went into 3 more rounds of high dose chemotherapy with 3 bone marrow transplants. Following all rounds of chemotherapy we brought Jocelyn up to Seattle Children's Hospital for 6 weeks of Proton Radiation Therapy. Following all these treatments Jocelyn had a clear MRI & Lumbar Puncture at the beginning of March 2020, and was declared cancer free March 11th, 2020. Sadly this isn't where her journey ends.

Jocelyn had a routine MRI July 13th, 2020 which showed yet again another tumor. This tumor was completely removed a week later during her 3rd brain surgery. Following the surgery she was entered into a trial involving the drug Alisertib. After 2 rounds of this chemotherapy treatment Jocelyn's team performed another MRI to check on the effectiveness of the drug. Unfortunately the scan revealed Jocelyn's 3rd tumor. After a couple weeks of deliberation on what was the best next move we decided on having the tumor removed. Jocelyn just had her 4th brain surgery October 14th. Her surgeon was able to remove approximately 85% of the tumor, without causing any damage to her development. Jocelyn is now recovering from this surgery and will soon be starting the MEMMAT treatment protocol in hopes to eliminate the remainder of the tumor.

 

>>Fast Forward to Summer 2021. Jocelyn and her family were living in NY and driving Jocelyn to treatments in Boston.

 

>>JULY 23, 2021

I’m numb. I have no better way of explaining it.

I can’t feel. I’m in denial.

Life shouldn’t be this way.

Life shouldn’t be this hard.

I’m drowning.

Jocelyn’s scan came back with the worst possible scenario. The pieces of tumor that remained from her surgery 9 weeks ago have both doubled in size. There’s now a 3rd new tumor half the size of those located on her 3rd ventricle. There are multiple regrowing tumor nodules surrounding the entire surgical cavity. There are 4 new tumor nodules in various parts of her brain including on her brain stem. The cancer is taking over. It’s spreading in such a rapid way we never could have imagined. Until now she’s never had a spread beyond the site of her original tumor. She’s developed something called Leptomeningeal Metastases, which in short her CSF ( cerebrospinal fluid) is now flooded with cancer cells. These are coating different places of her brain not only causing the cancer to spread but also causing build up fluids. This is the root to all the nausea she’s been having.

We don’t know where to go from here. We’re currently working with multiple Neuro-Oncology teams around the country to see if there are any options for us. I want nothing more than to wrap her up and run away from all of this, run to a place where cancer doesn’t exist. I feel now more than ever, that we’re going to lose her, and I don’t know how I’ll survive that. Our fight is just about over.

 

>>AUGUST 4, 2021

The past 2 weeks have been nothing short of exhausting.

Two weeks ago we were told Jocelyn’s cancer had progressed significantly, and was beginning to spread to various parts of her brain. We waited anxiously trying to figure out of next step. The team in Boston gave us some suggestion on possible next steps but wanted to wait until their tumor board met to give us more of a clear answer. So we waited and waited. After expressing the want to know what tumor board thought and still not hearing back we ultimately made the decision to return to her team in Utah, who could treat her immediately.

Over the past several weeks Jocelyn’s condition/symptoms have significantly worsened. She’s lost 5lbs, has started having left sided weakness, excessive vomiting, and just overall not being her active happy self.

We knew we needed intervention asap. Josh and Jocelyn flew home to Utah on Monday, and she was seen this morning.

As her parents we talked to her primary Oncologist and explained how we think a dual treatment approach is the best next step, she completely listened and agreed with us. She’s amazing. We couldn’t ask for a better Oncologist.

Today they started Jocelyn on a Methotrexate Intrathecal chemo injection schedule of twice a week in hopes of clearing her CSF. We will be combining this with an oral targeted inhibitor in hopes of slowing the spread/growth. We are at the point of no guarantees, we’re shooting every last possible shot we have and hoping somehow something actually works. Surgery at this time is no longer an option, we’ve exhausted it as far as possible for those I know will ask.

The future is unknown. But we will never stop fighting for a cure, regardless of what happens.

 

>>AUGUST 15, 2021

Jocelyn is currently admitted to the Oncology wing at her hospital.

Yesterday she began the first half of the day unable to hold any foods or liquids down, she was barely interacting, very lethargic and overall not herself. After a call into her team we determined bringing her into the ER was the most appropriate step. We got some blood work done, which showed all counts looking great. They hooked her up to some continuous fluids which have really helped hydrate her back up to normal levels.

She was given a head CT and X-ray last night which showed her shunt appears to be working appropriately; but also showed some enlargement within her ventricles compared to July’s scan. It’s hard to determine the cause of this from the CT alone, so we’re currently waiting to get her into an MRI scan either today or tomorrow to have a better picture. The cause could either be shunt caused, or continued progression in her tumors. We did adjust her shunt levels in hopes that will help symptoms, but also need to make sure the disease isn’t causing the pressures.

This morning she’s slightly better, she still is barely talking but has been communicating with signals and head shaking more.

At this point I would much rather have a shunt issue that can have an easier fix, than more disease progression. But we also have to prepare ourselves for the worse.

We aren’t sure when she’ll be able to go home, most likely not until after the MRI to rule out any needed surgeries. We will update as we can ♥️

 

 

 

>>AUGUST 20, 2021

Post hospital update:

Jocelyn came home earlier this week. Her MRI results were much better than we could have expected. One of her tumors still showed progression roughly .5-1cm in each direction. Which is never a positive thing. BUT, her other 4 tumor locations showed stability!! This is a big win for the moment, and definitely a peace of mind until next mri. Our biggest worry after her spread shown on the last mri was a continued spread and growth to the tumor on her brain stem. There are currently no knew spreads and the brain stem tumor has become less visible on scan!! For now we will keep pushing forward like we’ve been.

The cause of all her symptoms seems to have come from her shunt adjustment. She’s been feeling a lot more like herself since we upped the setting. Let’s keep hoping for this continuous stability and slowing of growth and spread. This is what we’ve been needing! ♥️

 

 

>>AUGUST 30, 2021

If you take anything away from this post it’s to always be your child’s best advocate.

Over the past 2 months Jocelyn has declined rather quickly. She’s lost over 6lbs, along with losing almost all of her fat and muscle mass. We’ve been trying so hard to get her nutritional levels back up, with no luck. She’s extremely malnourished, it’s time for a more continuous intervention.

We had Jocelyn’s consultation Friday for a G-tube placement. After the appointment scheduling tried to make her surgery for September 20th. Note that Jocelyn has barely been consuming a days worth of calories within an entire weeks time.. So of course I said absolutely not. The next best option they had was for the 8th. This still wasn’t good enough for me. Almost another 2 weeks without eating? I don’t think so.

Fast forward to today. Jocelyn had her typical Monday intrathecal injection with her team. During this appointment these dates were discussed and her team had the same feelings as myself, this cannot wait that long. Jocelyn can’t wait. So here we are, now admitted again and hopefully will be having surgery tomorrow to have that tube placed.

As I stated in the beginning, be your child’s best advocated. Know when to take that next step, above someone’s head if need be. Don’t back down, keep pushing. We are so lucky to have the amazing team of doctors, nurses and coordinators that we do, that push right along side us and truly care about Jocelyn’s wellbeing. A team who truly listens and takes action on our each and every concern.

We will update post surgery. Let’s hope this is the bridge we need to get Jocelyn’s strength back up, and her feeling more like herself.

 

 

 

>>AUGUST 31, 2021

Surgery is postponed.

Jocelyn’s sodium levels were elevated during this morning’s bloodwork so that put everything on hold for today. There is no real answer to this elevation yet. It could be in result to some of the fluids & nutrition she was given over night, or could be due to a kidney dysfunction. We don’t know yet.

We are continuing to monitor these levels throughout the day. So far no progress has been made. We will make a decision later tonight or in the morning on if surgery can even happen tomorrow.

If it’s not one thing it’s always another. Nothing comes smoothly. We are so lucky to have the amazing support system from our friends here in Utah. They’ve helped endlessly with the twins each and every time we’ve needed them. We appreciate you guys so much ♥️

I will update as we know more.

 

❗️Update❗️

After further lab work and urine samples, it’s been determined that the elevated sodium levels are due a kidney issue. In short her kidneys aren’t being sent proper signals from her brain to regulate the fluid flow out of them. So every bit of fluids entering her system are being dumped out almost immediately.

She has been on constant fluids since coming into the hospital yesterday, and going through drinks like crazy (another sign of this condition). With this we know it’s not a matter of her fluid intake not being enough, and more of a kidney/brain tumor caused issue. She was just given a drug to try and help regulate the kidneys and we will continue retesting throughout the next day or 2.

I will update as we can. Let it be said that I understand some of you are worried BUT as her mother you can see all the right decisions we’ve made in her best interest. We are working with multiple teams of doctors at this time and are making EVERY single decision with her safety and health at the top importance. I promise, you do not know better than we do regardless of your career status; you have not been on Jocelyn’s care team.

For those showing continued love and support, we thank you. ♥️

 

>>SEPTEMBER 7th, 2021

This is something I never wanted to have to say.

Life has a way of throwing you the absolute worst curveball at the most unexpected time. Last Monday Jocelyn got admitted to the hospital for what we thought was a simple g-tube placement. As the week went on multiple different health issues started to arise. By Thursday things were looking great, she was so happy, so interactive, had the best appetite… things really were great. I even shared that moment of us singing together.

As Thursday ended and Friday began we were faced with a completely different child. Screaming in pain for hours… suddenly unable to support her body in any way.. no longer talking, very confused.. it really was a flip over night.

Moving into the weekend we got another MRI. This determined a slight shift in her tumor/CSF fluids. The cancer has officially taken over. It’s causing all these symptoms. In a matter of hours we lost Jocelyn for the way we knew her, what we have tried so she hard to preserve. Up until now we have made every right decision in favor of not causing her pain and suffering.. and yet we’re here. She is in pain, she is suffering.

We had to come to terms and make the decision no parent should ever have to make. We are transporting Jocelyn home tomorrow by ambulance, on hospice care. We were told we would be very lucky if she makes it past the end of the month. With the rapid decline we’re looking at possible days left with our sweet innocent baby girl.

I am so sorry Jocelyn. You don’t deserve this suffering. You don’t deserve this life you have been given. I am so sorry this is how everything played out. I’ll love you to the end of time. My soulmate, my best friend, my little girl. I’m shattered.♥️

Please respect our privacy as we navigate through the next couple weeks. Thank you.

 

 

>>SEPTEMBER 8TH, 2021

We’re bringing you home princess ♥️

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I think it’s so very important to note that even though our journey is almost done; I will never stop spreading awareness. So maybe one day parents can stop going through this nightmare.

 

 

 

>> WARNING: THIS VIDEO IS EXTREMELY HARD TO WATCH

https://vm.tiktok.com/ZMRaYAMAR