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Holly's Cancer Journey

$23,045 of $20,000 goal

Raised by 224 people in 8 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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Holly had her First day of School today!

All my girls were very excited!!  They went to bed early, got to bed later after all the giggling and were excited the day had finally came.  The girls are ready to start "big school".  We walked as a family to school which is something I enjoy very much!

We waited in our lines for the bell.  Its nice that Haley and Holly are in lines right next to each other.  They were both ready to rock and Holly was excited.  Another mother came up and introduced herself and child and that was great!  So I know Holly already is making friends : )  

First day in the book!

Right now I am waiting for her Dr. to call with what time we go inpatient tomorrow.  He originally said 9 am but I am wanting to push for hopefully after lunch so Holly can go to school for half a day.  Hopefully if everything goes well like in the past we will be home by Saturday night and ready for school Monday again!  She will be low counts next week, but the kids have a 4 day weekend, so hoping that hospital stay is over the holiday break, which would work out nicely...but who knows...it will be what it will be...

Hope everyone has a great week!

Enjoy your family!

AMY
 
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We have been busy!  Holly was able to come home Monday afternoon and get a day of rest before we met her teacher at Kindergarten Meet and Greet on Wednesday!  She is so excited to start school.  Her teacher seems amazing already and the school has been supportive and ready to help Holly in anyway!!  We have requested Haley and Holly be in separate kindergarten sections. they are right next door so when we went they had to make sure they weren't too far apart :)  They are ready to start school!  We are excited as well!!

On Friday she had outpatient chemo.  All went well and then she got a special treat.  The Air Force Thunderbirds came to the castle and Holly got to meet them.  They were amazing to visit with and so kind to Holly!  

On Saturday we enjoyed a quiet morning and then we had a special surprise at Dairy Queen.  Holly Got her Wish!  She was interviewed back in Jan for her Make-a-Wish and today she got to hear her wish was granted!!!  It was soo amazing to just see the excitement and happiness in her face and just the shock of getting to go to Disney world to meet Princess Elsa.  She is still on cloud 9 and so are we!  Her wish Granters Kerry and Kristin were there and holly was happy to see them!  They have been spoiling us throughout this cancer journey and really lifted Hollys spirits right at the perfect times!  She was happy to see them again!!! The Wish sponsor family is so wonderful and caring and we were lucky enough to meet and visit with them.  Holly enjoyed saying Thank you non stop and gave a million hugs : ).  

 Holly has been feeling really good and having lots of energy!  She will start School on Thursday.  We are practicing walking to school to see if she gets too tired and we have to drive.  Its 4-5 blocks away but they are LONG blocks.  She wants to walk, but she just doesn't have the endurance right now...We will get there...

Holly will go to school the first day, and then go inpatient at the castle for another Big Chemo.  We haven't scheduled that time yet....Im pushing for later in the afternoon or at least after lunch so she won't miss much school.  She is supposed to get blood work the first day of school but we are going to do it the evening before so we can just enjoy the first day like any other kid and not have to rush to lab!  

We are thankful we had a fun summer even if it was at home or at the castle.   Holly and Haley are playing and bonding like before and all 3 girls are Best friends...minus some tattling and squabbles.  Im glad to see all my girls together and enjoying each others company!  Its starting to feel like old times....and it makes me a proud mama of all my girls!

Thank you all for everything!!  Enjoy your family!

 
Amy 


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We are currently in the castle. Holly had low counts and fever Thursday so we went in. Today her anc is still zero. So we won’t be getting out for a while yet. Holly continues to have ear pain along with hearing loss. We are scheduled to see an ENT dr in 2 weeks. We hope her numbers have bounced back by then !! The process to get a hearing aides is taking longer than I thought but we do what we can when we can.

Holly had some visitors who dropped off a donation and gave her a bike plate from a fundraiser they did for cancer patients She loves it and already said we have to hang it in her room!! It’s amazing how wonderful the community has been and how everyone continues to ask and think of holly!

We are more than 9 months since we were diagnosed. It’s getting harder and easier at the same time. Harder because Holly’s body is just taking longer to bounce back from all the chemo. I’m exhausted. I’ll be honest. I’m still very tired. My mind, body and heart. Holly has great spirits and this kid is tough as nails. So I can’t complain. We have been fortunate thus far with how well holly has handled treatment.

Hopefully holly will be out by Wednesday and she can attend the kindergarten meet and greet. She is so excited to start school. I’m excited too but also worried. She will be exposed to a lot of germs and she probably won’t be able to get a flu shot. This has been in the back of my mind constantly. But I can’t keep her in a bubble even if I wanted to. So hopefully between holly washing hands and pure luck we will stay healthy. Haley and holly are in different sections for school per our requests. I am excited to see them grow individually and not be in each other’s spotlight 24/7.

Holly had some friends take the girls out for ice cream this past week and she enjoyed that very much! I enjoy watching her just be a kid and not worry about the castle and she is confident with herself in public and I am so proud of that!!

No other news. We continue to get our weekly chemo again. Our scheduled breaks are over. Appointments got moved to Friday’s now with school starting so she can rest over the weekend. So we are happy the clinic has been amazing to help with school.

Thanks again everyone who has been following our journey! Holly has the best support team and we know you all have helped so much!!

Enjoy your family!!
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We are currently inpatient for another round of chemo. She has 4 inpatient chemos left and hopefully if the tumor is all gone we can switch to everything outpatient. This is week 30 (31 with delay). It’s 42 week treatment regimen so getting close to being done with treatments. We will be planning to go to mayo mid October for follow up and end of treatment scans.

We have had some nice scheduled breaks in chemo these last few weeks and that has been wonderful for holly and all of us really. Holly has gained 7 pounds ;). She is eating like a rock star and feeling great. She enjoys swimming, going for multiple walks a day and riding bike! I love seeing her smile and just getting to act like a kid!

I haven’t posted much because no real news to share. It’s routine for us now. This journey has been going on for almost 9 months since diagnosis. It’s crazy. I feel like it’s been that long, sometimes longer and other days I feel like we were just told yesterday. Time is a blur to me still after all this time.

Holly will be starting kindergarten in 3 weeks. If everything goes according to plan she will get to attend her first day of school with her sisters! Her second day of school we will be inpatient for another round of chemo which I’m sad about but it is what it is. Luckily there is a tutor at the castle so she will be able to keep up with her school work.

We hope to spend what’s left of summer getting ready for school, swim, play, and just enjoying time together!

Thanks for everything as we continue on the journey!

Enjoy your family.
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