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Holly's Cancer Journey

$22,895 of $20,000 goal

Raised by 222 people in 5 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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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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Today is a great day!  

Holly got to ring the bell for her last radiation treatment!     She was very happy and excited to ring the bell!!  Her smile says it all!!  Another milestone in this journey!!

We are checking out of The Ronald McDonald house and heading back home!!!!   So many emotions today!!   

Holly’s first request is homemade pancakes for supper so that is the plan.  Easy and yummy !!

We are checking into Sanford tomorrow for another round of chemo.  Her weekly chemo restarts tomorrow so we are celebrating today!!!   We are anxious to get back to our old routine of chemos.  Hoping she tolerates the weekly treatments as well as before radiation.  We are almost to the half way point for inpatient chemo rounds!!!  

Thanks everyone for all the support during this part of our journey!   We love you all!!

Enjoy your family!!! 
Amy
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We are almost done. 

It’s been a busy week. Holly is feeling ok for the most part.  Her mouth sores are worse than she is letting on and so we are pushing fluids.  She is very swollen on the inside of her nose and mouth, but her face isn’t horribly swollen so it’s hard to tell from pictures :(. We are going home this weekend and plan to get fluids at Sanford.  We are almost to the finish line!    She is eating a little again.  Nothing crunchy or spicy etc.  so her favorites are grandmas banana bread, plain dry pancakes, watermelon and plain unbreaded chicken tenders from Buffalo Wild Wings.  So we are getting her much needed protein!   Once she heals I anticipate her appetite will be back with a vengeance. And we are looking forward to her chowing down again. 

We had a variety of appointments this week.  We said our goodbyes to some depts and made plans to schedule follow up appointments in October.  I wouldn’t think I’d be so emotional to leave here.  The relationships we’ve established here it’s harder to leave than I thought it would.  The staff here really cared for holly and we are so fortunate to have an awesome facility so close.  

The radiation staff showed up today in tutu’s (guys too including the drs) to sing with holly as she listened to frozen.   She was so happy and smiling.  We love this place so much!  Just goes to show how a little kindness and fun can really make a patient’s day.  I am curious how Holly will react on Monday when we leave for real!  

  I’m an emotional mess.  It’s hard because they can’t really show us scans from day 1 to Monday for radiation. We will get some results in a month or two.  They have to wait for the swelling to go down to see how it worked.  So we just hope the radiation team got all the areas they needed to.  We will restart chemo and just keep plugging away!

Thanks everyone for all the support, prayers, encouraging words, helping while we are gone and everything else.  It has made this part of the journey away from home bearable!   

Enjoy the weekend and enjoy your family! 

Amy
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Easter weekend flew by.  The sisters came down Thursday about 3 pm. Just in time for holly to be discharged from the hospital!  It made her day!  And ours too!!  

Friday the sisters came along to see where holly “gets her sleepy medicine”.  The girls behaved very well and Haley drew pictures on the nurses whiteboard in her room of what was going on. Lol. We let holly sleep most of Friday and she was in a great mood for her sisters and By Saturday the girls were tattling and squabbling so we knew it was like old times.  Lol   

Sunday we went out for Easter brunch at the Canadian honker restaurant.  We all enjoyed breakfast.  Holly’s mouth sores were pretty bad but she tried to eat. But didn’t eat anything.  So between a few Cheerios and plenty of protein drinks we are trying to keep her hydrated and maintain some weight.  The radiation can cause her to not be hungry anyways and adding mouth sores and then sedation every day.  It’s a chore to get her to eat.  But we try.  We weigh in tomorrow so I am curious how much she has lost.    We have maintained up until now so we just have to make it this week!  Holly hates staying at the hospital here  so she tries her damn best to eat.  That is my main goal this week. 

She doesn’t have many appts outside of radiation this week so plenty of time for her to rest and also gives me time to clean and slowly start packing up our room.   We are planning To move out of the Ronald McDonald house next Monday.  8 days left!!

No other big news.   The girls really brighten hollys spirit.  So we plan to get them together again before holly gets to ring her bell for radiation!

Hope you all had a wonderful Easter!

Enjoy your family!! 

Ps. I just love the pic of holly all mad that Haley wanted to sit with her! She was mad about 10 min then all better. But i thought it was cute :)
    
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