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Holly's Cancer Journey

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Raised by 223 people in 6 months
*This page was set up by a family friend to help support the Huntimer Family.

Sweet Holly is 5 1/2 and  has been diagnosed with an aggressive form of cancer called parameningeal rhabdomyosarcoma. While we wait for more details, what we do know right now is that an MRI will be done and a spinal tap to look for cancer cells in her spinal cord. She is also having a port placed to make it easier to administer her necessary medications.

The Huntimer family has been busy meeting with many doctors, trying to figure out the best course of treatment as the tumor is not operable.

Currently it is looking like chemo will be done at Sanford and proton beam radiation at the Mayo Clinic in Rochester, MN. 42 weeks of seven different chemo drugs and 5-6 weeks of radiation. Then continue maintenance chemo for 6 to 12 months after the initial 42 weeks.

While we don't know what future holds, we know Holly is feisty and she is a fighter. Please help us support the family as they dedicate their time to helping Holly. There will be many doctor appointments, hospital stays, travel and much more. This also means lost income and many medical bills that will be piling up.

Holly is a twin to Haley and they have an older sister, Lexi.

Kudos to the family for staying on top of Holly's health even when answers were hard to come by. It all started when Holly said her ear hurt. She spent 5 days on medications with no improvement. She was put on an antibiotic, but the pain wouldn't go away. She had some swelling by her jaw and doctors thought she had an infection they added some steroids and saw some improvement. When things weren't getting better, Amy took Holly in for a hearing test. She had no hearing in her right ear. She saw an ENT doctor who thought maybe she had TMJ. Amy made sure an ultrasound was done right away, which showed there wasn't an abscess, so a CT scan was done Friday morning. They found out Friday afternoon (12/7/18) she had a tumor in her sinus that was inoperable. More tests are scheduled in the coming days. Right now it does not look to be involving her brain, however the tumor is growing into her skull base and the bone under her right eye.

Adam and Amy are doing everything they can to make sure their daughter is getting the best care possible. Please consider a donation to help them offset costs and missed time at work as they fight for Holly.
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We got some of Holly's scan results and are waiting for some final confirmation from Mayo....unfortunately there is some areas that are still suspicious. So Sanford is completing a PET scan next Friday. We are sad and devastated to say the least. The PET scan will show better if the area in question is still active tumor or if its inflammation. We are hoping it's inflammation, but the drs are not too confident it is. Dr said the questionable area was the size of a fingerprint. The tumor didn't shrink much since March, but that is common with proton radiation. The radiation kills the tumor and stops it from growing. Holly will continue to get CHEMO and we hope that the chemo will finish the job. They are now maybe discussing surgery if its needed which means another trip back to Mayo. I am asking a lot of questions about surgery since its been considered inoperable since day 1 and I asked if this was considered plan B. They said the area is in a easier accessible area, but it would be considered major surgery and have lots of cosmetic issues. We honestly just a lot of unanswered questions...

We are struggling this week since last week was amazing and such a highpoint for our family and then 3 days later just down in the dumps. We remain hopeful....but its been emotional for all of us. We haven't really talked to Holly about it, not sure how much she would understand. we don't want her to think the bad guys are winning.... We are using better terminology now and she knows she has cancer bad guys...So we continue to discuss how we have to keep fighting the cancer until every last one gone.....

We do have to be positive and look at the good parts. The tumor didn't grow any...so that's good....its still responsive to treatment. Holly is feeling great....honestly. she is doing so well...She has strong muscles, etc and her balance is still great....reflexes are gone but she hasn't lost any sense of her feet...so no braces or PT is even needed at this point. Holly is laughing and really loves going to preschool/daycare...she hates it when she can't go due to dr appointments...

We will know more next week. Until then we will continue to have her Weekly chemo and keep pushing ahead!!

We are so thankful for all the encouraging words, thoughts and prayers from everyone. We couldn't do it without all!

Enjoy your family!!

AMY
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It’s been a whirlwind these last two weeks.

Today As I write this holly is getting her mri. We are hopeful that the radiation worked and the tumor is completely dead. She will continue to get chemo for along time yet as we still have to follow the protocol. If the tumor is still showing some activity then I don’t know what the next steps will be. But right now we are planning for good news. If scans are good We will get them again in September/October at our “end of treatment” to see if we can switch to maintenance chemo.

Holly’s images will also get sent to mayo to have the radiologist read so I am unsure of when we will get results. But I will update as soon as I know :)

We just got back yesterday from a wonderful trip. We were fortunate to get to go as we had this booked prior to diagnosis. Our doctors worked with us and it just happen to fall on a good week for holly!

I didn’t ever really write about it, But We had some low points at mayo during radiation with pain and sadness, nothing a parent should see or a child should endure and we would talk about our trip coming up this summer and it was a good incentive to have holly continue to fight. That is how we survived mayo! She is an amazing kid.


We spent a lot of family time together which was awesome and lots of swimming and beach time. The girls all swim many hours everyday. This was great for Holly’s muscles and she really got some strength back. She also ate a ton!! Which was amazing. That kid gained 3 pounds in a week :) We also spent some time at the beach., making sand castles, chasing crabs and playing in the crashing waves. The best week ever!

It was so nice to have a week off from all tests, appointments, chemo and just thoughts of this horrible disease. We will cherish these memories forever.

I didn’t take lot of photos during this trip. I was away from my phone and just stared in awe of my kids playing together and laughing and being kids. I enjoy those memories and we hope to make many more in the future :)

Thanks for all of you who continue to follow our journey. It takes a village and we are so lucky to have you all care for Holly so much!!!

Enjoy your family.

Amy
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Hello!

Sorry its been a while since I have updated.  I have been busy with going back to work full time and just getting things organized for the next step in this journey.  Post radiation scans have finally been scheduled.  Monday June 10th we will get a CAT scan and MRI to see if the proton radiation did what it was supposed to do.  We will not get our answer right away that same say but later in the week.  I am anxious and hopefully it worked and the tumor is dead!  

Holly has been receiving her chemo like clock work since we have been back.  The burns on her face have healed wonderfully and her mouth sores are healing.  She was having ear pain due to the burns healing, but those have subsided as well.  She will be low counts this week so we are anticipating a stay at the castle soon.  While she was receiving radiation she couldn't receive one of the drugs due to radiation toxicity.  Last week that drug was added back in.  We are now monitoring for what's called "radiation recall". It can cause her burns and mouth sores to fester, etc.  So far Holly has only had her face more swollen in the areas where she received the radiation and her eye tearing and nose constantly running.  So we will continue to monitor and hope this is the worst we see for this...  

We are passed the half way point for her inpatient chemos.  She will get some nice breaks this summer so perfect timing for us to enjoy the pool and go to "the pirate ship" and "river" aka Wild Water west.  I look forward to having a the most normal summer we can!!

Holly has lost some weight so we are trying to get her to gain some back.  She lost about 10 pounds over the past month.  I joke that I feel like we live with a little pregnant lady: Whenever/whatever Holly wants to eat we try to indulge when possible.  Her appetite is getting stronger so we are happy to help...lol.  Most requests now include ice cream, fruits and veggies, cheese pizza, TCs, HyChi, and grandmas banana bread.  

Another thing I have noticed as Holly continues to heal is that she is TALKING more and more.  I think back to prior to when she was diagnosed that she was my "quiet twin". I think about how the tumor was hurting her jaw, mouth and she couldn't hear anything to take part in the conversation.  Now she is little CHATTER BOX...and I absolutely love it....We do need to tell her to eat in-between stories!!  HAHA. I just love hearing all the stories she has to share!  She does inform Haley often of how she's not following rules...Haley selectively listens.  

The girls relationships are getting better too.  They are enjoying slumber parties and playing more together and lots of giggles and laughing in the next room....I am so proud of all my girls for supporting holly and continuing to include her.

We are taking a break from Chemo next week and going on an adventure before Hollys scans.  We just want to focus on our family and create some wonderful memories for Holly and for all of us to share for the many years to come!!

Enjoy your family!!


AMY

 

 
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Tonight we got to celebrate Haley and Holly’s preschool graduation! Kindergarten here we come!!

We were so happy to have Holly well enough to attend and her and Haley practiced their songs so they were all ready! Holly had chemo this morning then she rested most of the day and so she was bright eyed and ready for her program!!

Our hearts are so happy that we got to see both girls graduate together!!

What sometimes seem like Little things in life are big things to us. We are on cloud 9! We can’t wait for summer. Lots of fresh air and quality family time!!!

Enjoy your family :).
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