Kaitlyn Strong

My cousin’s daughter has been living, bouncing back, and I would say, at her age, currently thriving. However, they are not back to chemo and large medical bills. Kaitlyn and Julie need our help. Every single penny will go towards Kaitlyn’s medical bills. Please read my cousin Julie’s update on Kaitlyn below. We will continue to update and some pictures show more information. Kaitlyn started this awful journey in 2019. You can also view her care,

progress, downfalls, surgeries etc on her Kaitlyn Strong Facebook page. This is the most

recent information on Kaitlyn’s journey.

Kaitlyn had a follow up MRI today.

One of the hardest things to hear as a parent of a child with a brain tumor is... There is tumor growth.

Let's start with this: Kaitlyn is in good spirits.

To go backwards and to kind of give some history.

Kaitlyn initially, post diagnosis (January 2019), went on the first phase of Chemotherapy, Carboplatin and Vincristine. These two meds were infusion, and she had done them to hopefully stop the growth of her tumor and, if possible, shrink it. These two meds were very hard on her body, and she had the side effects that most people taking chemotherapy had. She did lose her hair, she had some appetite loss, and it was very difficult. She finished that Chemotherapy in June 2020 and was able to ring the bell.

Within the next 3 months, her tumor had started to grow, and we were on watch and wait. It was small growth, not significant but then the side effects of the growth started in January of 2021, and she had cyst fenestration where they went in again and, that was followed by her endo nasal surgery in March of 2022.

September of 2022, Kaitlyn then started her next round of chemotherapy treatment, this time in the form of pills. She was on Mekinist and Tafinlar. These pills kept Kaitlyn's tumor stable for 2 years.

During the time she was on those medications, endocrinology continued to monitor her hormone production to identify what areas she had deficiencies. First, it was the thyroid hormone. Then it was estrogen.

Now, where we are, it is growth hormone. In order for Kaitlyn to use growth hormone, she had to come off of chemotherapy. We started the wean from the chemotherapy in September and she was fully off the medication as of November. She had an MRI at that time which showed the tumor was still stable and the baseline was set.

Since November, Kaitlyn has had additional testing, which included the confirmation that her growth hormone is insufficient. The window of her growth plates closing is getting smaller, so the plan was to start on growth hormone. It is actually set to be delivered tomorrow.

At the MRI today, I was worried. I know that Kaitlyn has been showing signs of increased fatigue, but she didn't have any headaches or anything. In my mind, I knew that last time, the tumor grew when she stopped chemotherapy, so I was worried. So very worried.

Her oncologist came into the room as Kaitlyn was in another room getting some bloodwork situated to confirm if she has any indication of diabetes insipidus and the first thing she said was - there is growth.

What a scary thing to hear. Thinking about all the things we hear when talking about tumors and cancer and all those things that are scary - this is one thing that you don't want to hear. Watch and wait is hard. Stable is what we want to hear. We never want to hear that it is growing. This tumor that we can't control without medication is growing, in a place you can't see. You don't know what is happening from one MRI to the next.

So, we talked about it. She brought up the MRI on the screen - I am still waiting on the final version with the measurements on it - and you can visibly see the difference - you can see the size difference. Her doctor said that she was reaching out to endocrinology and that we cannot start the growth hormone. She is going to work on the authorization to be done so she can get back on the chemotherapy meds - Mekinist and Tafinlar - ASAP.

She will need to get back to stable so we can determine next steps related to her hormone deficiencies - one scenario, she stays at the height she is, maybe get a little bit taller but highly unlikely. Another possibility is that they identify if she is eligible for both growth and chemo at the same time, which is not approved and probably will not happen.

On Wednesday, we have ophthalmology. The ophthalmologist will look at her vision and identify if this growth caused any impact to her vision. If he feels it did, she will have to go on a medication at the day hospital, once every two weeks, to bring down any swelling of the blood vessels by her ocular nerve. This will only be a few treatments, so there will not be a need for a port again, at this time.

Neurosurgery is not being called in yet. However, that is always a possibility. The immediate need is to stabilize the tumor and stop the growth.

This path is not easy. It is not easy to know that there is this tumor that can shift, move, and grow, at any time in my child's brain. There is so much uncertainty. So much of a cost - in so many ways - that wears at your soul.

Today has been a hard day and I can't explain what that feels like.

To Kaitlyn, she doesn't have to have the daily injection that comes with growth hormone, and she is a pro at the chemotherapy pills, so she is not seeing what I see, and I am ok with that. I want her to not worry, and I want her to be ok with all of these changes. We always ask if she has questions and right now, she doesn't. Maybe as she gets older and other things come up, she might have some but for right now - she is being the rock star she is and taking each step as it comes.