Amy's Team

For: Jason and Susan Kindstedt
Organizer: Amanda Tombarelli
of $60,000 goal
93% Complete
This fundraiser is closed. Thank you for your support!

The Story

On January 10, 2014, Amy came home from school reporting that she didn't feel well at school and she had gone to the nurse. Friday night she barely slept and kept coming into her parents' room saying her chest hurt. Her mother had brought her to the doctor twice this fall for this chest pain. Her pediatrician had diagnosed it as costochondritis (growing pains).

Saturday morning, Amy had a low grade fever so her mother brought her to the doctor again. The doctor thought it was the start of a virus. Susan asked if they should get an X-ray (they had suggested this at a previous appointment but didn't think it would show anything). The doctor said they might as well do the X-ray.

Following the X-ray she was diagnosed with pneumonia. Her mother asked if the pneumonia could have been lurking since the fall and the doctor said that no, this was probably unrelated. This diagnosis didn't seem 100% right to Susan as Amy insisted it was the same pain all along. But they started on antibiotics anyway. She spent all weekend laying down watching movies. Her condition did not improve with the antibiotics. Susan kept calling the doctor and they kept telling her to give it 12 more hours. By Monday morning, Susan knew they had to go back in. She called at 6:30 am so that she could be sure to speak directly to the on-call doctor. He wanted them to come in first thing that morning. He ordered an ultrasound. The ultrasound revealed a nodule, and he told the family to go directly to the ER at Children's Hospital in Boston. 

They arrived at around 5pm Monday evening and after repeating X-rays and ultrasounds Amy was admitted to the ICU. They still believed it was pneumonia and Tuesday morning they surgically removed fluid from her left lung. Pathology revealed no infection in the fluid which was cause for alarm as they were not sure why the fluid had collected.

On Tuesday afternoon a CT scan revealed a mass in her chest. Wednesday it was biopsied. Thursday it was confirmed to be cancer, and Friday it was classified as rhabdomyosarcoma. Friday night Amy had her first dose of chemotherapy.

Amy has two younger brothers, Thatcher and Hunter, who love her dearly.  Amy loves to read and play with her American Girl dolls.  She has a deeply empathic heart and is frequently thinking up clever ways to raise money for school children in Haiti for an organization called, "Help for Haiti."

Thank you for praying for Amy and her family. Your support will help to defray medical-related expenses and allow the family to focus on Amy's full recovery. The money from this fund will help the Kindstedts pay for hotel expenses, travel to and from the hospital, the insurance deductible, medicines and procedures not covered by insurance, food, and all of the other countless expenses that are popping up because of this medical crisis. Thank you for being a part of Amy's Team! 

Fundraiser Updates

Posted on July 17, 2014 by Amanda Tombarelli
7/17/14: Here is Susan's latest update:
Smoothie day again at the Jimmy Fund Clinic! Amy has a special recipe that is quite delicious and she was pleased with the tiny umbrellas they had for us today. :) Amy's feeling great. She has gained more weight - she's just a couple of pounds under her pre-diagnosis weight. She had a brain scan this morning and tomorrow we will meet with the neurosurgeon to discuss the plan for surgery and the results of the scan (which will hopefully help her classify the 'spots'). Amy has five days of chemo starting today. Please continue to pray for wisdom for the doctors as they develop her treatment plan.

Posted on July 1, 2014 by Amanda Tombarelli
Tuesday, July 1, 2014: Here is Susan's latest update:
Amy's done with her five days of chemo and hopefully home for a bit. Amy's oncologist was presenting her case at a conference at Dana Farber yesterday and was also consulting with the PPB experts in Minnesota. Most likely she will have another brain surgery the week of July 14th as we need to wait for her blood counts to rise again from this chemo cycle. Please continue to pray for the doctors as they try to determine the best course of treatment. We still have not received the final pathology from last week's biopsy.

Posted on June 23, 2014 by Amanda Tombarelli
Monday, 6/23/14: Here is Susan's update for today:
We just met with the neurosurgeon and she is "guardedly optimistic" but not 100% certain about what was found today. She had to take four biopsies from the 2cm spot on Amy's cerebellum because each time she took a sample it was tested and found to be normal tissue! Amy will have another MRI tomorrow to confirm that the samples came from the area that looked suspect. If the MRI confirms it was the correct area she believes it was just a vascular defect that has always been there and no treatment will be needed. In this case she will (in a month or so) remove the other two 2mm spots (which are very small and close to each other and therefore one surgery). The surgeon is stressing that she is guardedly optimistic as the 2cm spot had the appearnance of a tumor on the MRI. The final pathology of today's biopsy will come next week - which will provide additional confirmation. Amy will be heading to ICU shortly. Thanking God for bringing Amy safely through this procedure and for this amazing finding! Please pray that the MRI and final pathology are able to conclusively confirm that the spot is not a tumor!

Posted on June 19, 2014 by Amanda Tombarelli
Thursday, 6/19/14: Here is today's update:
She made it to the last two days of school! We spent this afternoon swimming in our neighbor's pool and bike riding. You would never know she is so 'sick.' Tomorrow we head to Boston to meet with the neurosurgeon. Amy will have the larger of the three spots biopsied on Monday. Two of the spots are 2mm and one is 2cm. The 2mm spots are close to each other and in a location that makes them 'easy' to remove, however they close enough to the larger spot to remove during the same procedure. The 2cm spot is in a slightly more challenging location but also has a 'different' look to it. They want to biopsy it first before removing it to be sure it is a malignancy rather than an area altered by chemo or a vascular defect that has always been there. Tomorrow we will get more details about the procedure and recovery. Amy will have another pre-op MRI. Thank you for keeping us in prayer!

Posted on June 13, 2014 by Amanda Tombarelli
Friday, 6/13/14: This is Susan's update for today:
Amy's oncology team came by after her transfusion this afternoon to go over the results of this morning's MRI. I knew it was probably not a simple good report when our team psychologist was with them. It's actually a long story that begins a couple of weeks ago with the pathology report following Amy's surgery. There are still more questions than answers, but here is what we know.

Amy's tumor, when completely resected, was reclassified as a cancer called Pleuropulminary Blastoma (PPB). This type of cancer is exceedingly rare with only 300 cases worldwide ever diagnosed. Her original diagnosis was not a misdiagnosis and still stands as well. Her doctor explains it as the PPB 'transitioned' into a Anaplastic Embryonal Rhabdomyosarcoma tumor. The pathology is the same at a cellular level but when the whole tumor was examined it was found to be PPB. Confusing, I know. This reclassification did not change her chemo protocol. Last week we had her tumor sent to Minnesota Children's Hospital which is home to the international experts on PPB, for a second opinion concerning treatment and to confirm the diagnosis. We were waiting for this confirmation before we told Amy and all of you.

This brings us to today... PPB frequently spreads to the brain. 'Regular' Rhabdomyosarcoma rarely does. When the possibility of PPB arose a couple of weeks ago I immediately asked for an MRI to check her brain. She had not had one yet so we have nothing to compare today's MRI to. This afternoon we found out that Amy has three "spots" on her brain. There are a lot of uncertainties still about the significance of this finding. Are the spots cancer or something else (ie a side effect of chemo)? If the spots are malignant are they active or dead? If they are cancer did they spread before treatment or during? Once these questions are answered we will know more what this finding means. We know the spots are not in a place that puts her in any immediate danger. They are not causing her any problems functioning or pain - both of which are encouraging signs. Amy's oncologists are very encouraged by how well she is doing overall especially in light of this new finding. She is very strong physically and continues to gain weight and be much more active than they would expect - again encouraging signs in light of today's findings. Amy's team will conference with the neurosurgeons about what the best plan will be over the next couple of days.

We made the decision to tell Amy about the 'spots' and she is understandingly confused and angry (angry she said that she might have more cancer). Overall she is handling the news remarkably well. Please pray for peace and wisdom as we go down this new road. Please pray for wisdom as her doctors make a plan for treatment. Please pray that Amy can take part in the last week of school next week. She will be so disappointed if she has to miss it. Today she said she just wants to be a normal kid again and normal kids don't have to miss the last day of school.

We are thankful to be going through this at the #1 rated Pediatric Cancer Hospital in the country (per US News &World Report this week - thank you God for this timely confirmation that we are getting the best possible medical care for our little girl!). God is faithful and we trust Him to lead us through this time of uncertainty.

For more information on PPB visit

Thank you for your continued prayers and support!

Posted on June 13, 2014 by Amanda Tombarelli
Thursday, 6/12/14: This is Susan's update for today:

It's been a long day for Amy... We started early with an MRI (which lasted 1.5 hours - she was very annoyed to have to be perfectly still for that long). Then her clinic visit and blood work. Next chemo and a transfusion (her platelet levels were low). Her white blood cell count is also very low, so we're back to being super cautious about illness. We're hoping to be heading home by 4:00 - just in time for rush hour traffic...

Posted on June 1, 2014 by Amanda Tombarelli
Sunday, 6/1/14: Here is Susan's latest update:
Amy was very tired and not feeling well this morning - indicators that her hemoglobin had dipped even lower. She's at Portsmouth Hospital now having a transfusion. Her white blood cell count is also dangerously low (not fixed by a transfusion), leaving her susceptible to infection. So once again, please stay clear if you have been sick. Hunter has a slight cold so we're going to be extra vigilant with hand sanitizer and have Amy wear a mask at home. Please pray that his cold does not last long, does not spread to anyone else and especially that Amy stays well. A cold or simple illness could land her in the hospital...

Posted on May 30, 2014 by Amanda Tombarelli
Friday, June 30, 2014: Here is Susan's latest update:
Amy has been feeling great this week! No ill effects yet from last weekends five days of chemo. We have finally figured out a perfect combination of anti nausea medicines for her. She had a great time at field day today at school (even though she had to sit out a few events because she's only four weeks post-op). She's been eating well and her weight is up to where it was just before surgery. No chemo this week. We were supposed to have an MRI today but after arriving they had to reschedule it for when she is six weeks post-op. Amy was annoyed that she missed half a day of school for nothing. Next week we go for an echocardiogram Wednesday (the chemo she had last weekend can cause heart damage so they need to monitor her heart closely) and then a two day chemo course Thursday and Friday. Thank you for continuing to keep her in prayer. God is good!

Posted on May 16, 2014 by Amanda Tombarelli
Friday, May 16, 2014: This is Susan's latest update:

I just returned from a field trip with Amy and her class. She's tired but all in all feeling pretty good physically this week. She has been struggling with insomnia as the result of the appetite stimulants she was on, which leaves her pretty groggy during the day. She is neutropenic right now (meaning her white blood cell count is dangerously low and she has no immunity) so please no sick visitors. Two trips to Boston this past week - Tuesday to see her surgeon for a post-op visit and Thursday to see her oncology team and have chemo. Next week is a five day chemo course so we're hoping for a nice, relaxing weekend hopefully without any complications from low blood counts. Thank you for continuing to keep her in prayer!

Posted on May 7, 2014 by Amanda Tombarelli
Wednesday, 5/7/14: Here is Susan's latest update:
Looks like Amy will come home Friday. The chest tube came out today. Now she'll have chemo tomorrow and Friday, then home! She got to go out to the garden this afternoon.

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