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Holly's Cancer Journey

$22,945 of $20,000 goal

Raised by 223 people in 7 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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Hello!

I know it’s been awhile since I’ve posted.  We are on a scheduled break from chemo for a few weeks which is great.  Hopefully we will make counts for our next inpatient chemo August 2nd. 
Since we are getting some chemo breaks we have been busy.  Going to the dentist, eye dr, opthlamolgy, and audiogram to check hearing. Of course we have enjoyed some swimming etc as well.   

Dentist appointment was great.  No cavities and her teeth so far are doing well.  She has lost some teeth, but they are baby teeth and she’s on schedule to lose those anyways :) 

Eye dr appt was good.  Her vision has improved slightly so she still needs glasses but just for school.  She was excited to pick out a big kid pair  

At her opthamalogy appointment where we are monitoring for cataracts etc.  so far so good.  She was a trooper getting her eyes dilated and did a great job with the dr.  Her retina and optic nerve look good.  No sign of cataracts.  So follow up in 3 months like everything else.  

Holly is still having issues for hearing.   Her right ear which has good hearing is having some pain issues.   Mainly due to all the drainage from her sinuses related to the radiation and tumor being in that area.  There is s tube in place but it’s still not quite doing what we need it to do.  So we will see an ear, nose and throat dr in the next week or so to see if we need to replace the tube or what.   Her left ear hasn’t shown any improvement but hasn’t gotten worse. So after some consults we plan to get her a hearing aide for that ear and continue to watch for any changes.   We want to make sure holly is all ready for school and comfortable with any hearing devices she needs.  So more info to come on that.  

We have 4 inpatient chemo rounds left.  This has been a crazy 8 months and we still have a long way to go.  But holly is doing great!  She is feisty and has a great attitude which makes all these appointments and hospital stays not so bad.     

We are all excited for school to start in 6 weeks!   Holly loves school and just wants to learn and be there!   She wants to play basketball again this fall so we will plan to sign all 3 girls up again and hopefully she will have enough energy to play a little.  

Thanks so much everyone for continuing to follow our journey and keeping holly in your thoughts!   

Enjoy your family!
Amy
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Well our Dr called us and he gave us the preliminary results.   The PET scan did NOT light up at all!!!!  This is amazing news :). 

Pet scans will glow where there is usually tumors.    Holly’s scans were negative.  So in theory  the tumor is dead!!!   We will have to continue chemo as schedule for the entire protocol but what a huge relief.  Cautiously optisimistic. :) 

This journey has been an emotional roller coaster.   Or more like a rocket ship.  We have such highs and such lows with this journey it’s hard to explain.   We take this positive answer and we run with it!!   

In my heart I wanted to believe the tumor was dead.  Holly has been feeling great.  No pain, eating plenty, playing with sisters and friends.  Really started to feel like a normal kid!!

Holly doesn’t have chemo this week so we just have to blood work!   We are looking forward to lots of energy and just being a kid :) 

So as I close this we are starting this week on a high note :).  We are happy and relieved. 

Enjoy your family!

Amy
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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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