Miles’s Story

Site created on July 21, 2018

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting. For disclosure purposes, I am going to do my best to update you on the Hartz family and Miles to help minimize the number of times Ingrid and Dave have to repeat themselves. Pretend like this is them talking. I will do my best to relay accurate information.

Our journey started while hiking on vacation. Miles complained his right lower leg was hurting. Upon examination, it seemed something was wrong, so we made a note to take him to the orthopedic surgeon once we got back from vacation. On Friday, July 6th, we took Miles in, and the doctor ordered an x-ray. The results were alarming, and the doctor wanted an MRI right away. They worked us in, and he told us we were going to have to see a pediatric oncologist. The pediatric oncologist we were referred to was going to be out of town, and the next available appointment was July 25th. Ingrid called the orthopedic surgeon back, who told her she needed to get in ASAP and would start working on gathering more referrals. This could not wait that long. By divine intervention, Ingrid called a number on TCH's website for osteosarcoma (not yet knowing the diagnosis), and happened to get the head bone tumor doctor, Lisa Wong, on the phone. Dr. Wang instructed Ingrid to contact her assistant, and that she would need to be worked in the next day, Tuesday, July 10th at 9:15. Ingrid, Dave and Miles met with a team of four doctors, including Dr. Wang and the original doctor Ingrid was referred to (ironic). The decision was made to biopsy the suspected tumor, which was done on Thursday, July 12th. In the middle of all of this chaos, Miles is supposed to be at a three week summer camp, so Ingrid and Dave drove him up to camp to spend one night and get his bunk set up. They picked him up the next day to take him to the doctor and attend the follow up biopsy, etc. After the biopsy, they drive him back to camp. On Wednesday, July 18th, they got the call that confirmed the tumor was osteosarcoma and met with the TCH team that afternoon to go over the plan of treatment. After leaving TCH, they drove back and picked up Miles at 8:30 that night, telling him he wouldn't be able to return to camp. Friday, July 20th was baseline studies - heart, eyes, kidney, lungs, hearing, bloodwork. (maybe more but that's all I remember her telling me...) Monday, July 25th, Miles will have a port put in. While this sounds scary, it is a far better option than a PICC line and will help minimize the number of times Miles is stuck with a needle. Tuesday, July 24th they will go in for a bone scan and a CT scan and one other test. These results will allow the team to stage the cancer. The cancer is located in his fibula, which is the smaller of the two lower leg bones.  After the doctors get the results of the scans, they will determine the chemotherapy regimen. Miles will be checked in as an inpatient for the chemotherapy, which Ingrid thinks is two nights and three days. Each cycle of chemo starts every third week, and it sounds like there will be four cycles of chemo before he has surgery to remove the tumor. Once he has recovered from that surgery, they will continue chemotherapy. Ingrid has been told there might be transfusions in between the cycles of chemo because his blood counts can drop low. There will be more clarity on this during the week, so please check back on this site for updates.

So, what do they need? Prayers. Prayers for localized, resectable, non-metastatic cancer. Prayers for strength and healing.

The Hartz's friends are working on compiling a MealTrain, arranging transportation for Isabel, and gathering a list of needs. She gave us ten items yesterday, and we knocked those out. I made sure she knows no request was too small. When my husband Scott was in the middle of chemotherapy, Ingrid was running over to Costco. She called and asked me what we needed, which was Ziploc bags. Those types of offers will be very helpful to the Hartz family as they travel through this journey. The Hurricane Moms group is collecting DVDs and parking money for downtown. Help where you can. As someone who just wrapped up the cancer caregiver role, my best advice is to not ask an open ended question like, "What can I do to help you?" A more pointed question like "I am going to the grocery, can I pick up some fresh fruit for your house?" or "Would you like me to bring lunch to you at TCH today?" Cancer can be a lonely place, so if you get a chance to visit them while getting infusions or while Miles is recovering at home, please do. 

Dr. Lisa Wang is Director of the Bone Tumor Program and the Clinical Leader of the Musculoskeletal Tumor Clinic at Texas Children's Cancer Center. Dr. Wang has a special interest in sarcomas, particularly bone sarcomas such as osteosarcoma and Ewing's sarcoma.

Newest Update

Journal entry by Ingrid Hartz

Miles finished his last inpatient chemo on March 12, and is doing well.  We will go this week for post treatment scans and meet w/ his oncologist afterward.  We are so excited to be done with this chapter of his treatment!

Now that he will be out of the hospital and home on a regular basis, he will focus on his classes and complete his required schoolwork for 7th grade.  

Thank you to everyone of you for being so involved in his care and helping our family.  We truly appreciate and cherish all of our friends and family.

Finally, Spring Forest is holding one last blood drive for Miles on Thursday, March 21 from 3-6pm.  It is being held in tandem w/ the Health Fair and should be a fun event to stop by!  
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