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Michael ’s Story

Site created on March 6, 2009

Michael has been living with inflammatory fibroblastic tumor in his right arm since 2008. It is now 2019. That is 11 years of fighting this! He has endured many treatments - from 35 weeks of chemo - losing hair, eyelashes and getting sick while attending grade school. He moved to a clinical trial in late 2009 traveling to and from Minneapolis for 3 years. Michael was on an oral chemo - through his sophomore year in high school - making him sick to his stomach, cold, not eating well, throwing up and of course diarrhea. Who doesn't like to run out of class to get sick esp in high school? We decided to stop the medications after the clinical trial and compassionate use - that's 4 years including MRIs, Pet scans, and other medications for pain and nausea. We were checking his tumor by yearly MRI's - slowly growing by millimeters. In May 2018 Michael was having trouble moving his neck and was having pain. We knew his tumor had changed as the yearly MRI showed that it had doubled in size. Another biopsy, genetic testing and an adult oncologist, Michael started taking Alectinib - a targeted oral chemo. Michael will be 21 March 14th and is in his Junior at UNO. The Alectinib did not work and the most recent MRI has shown that it doubled again. IMT is rare tumor that is in his right deltoid muscle and has a fingerlike in his back pushing on nerves and neck area. Since it is so rare - there are NO experts in this field and the treatment plans are few to chose. As of Feb 22, 2019 we will be doing a PET scan in Monday to see if has spread, needle biopsy on Wednesday, visiting with doctors for treatment plans, discussing aggressive chemotherapy, immunotherapy, another targeted oral chemo and amputation. All have pros and cons - but the main focus is having Michael healthy.

2022 - Michael's tumor has grown significantly. He now has pain and surgery is not an option - too risky. We are appealing the denial of the new medicine, Loralitinib with Cigna. Appeal is this Friday. Michael has been rehired with TD Ameritrade working from home. The meds will make him sick for a while. It's best to work from home. We are asking for prayers for Michael, Keith and I, and our families for strength and trust in Jesus! Prayers for courage and positivity for Michael as he endures the labs, the medicine, MRIs, PET scans and doctor visits. Prayers for wisdom from the doctors and prayers the medicine will shrink this tumor! Thank you!

Dec 20, 2023 - dealing with this again.

Newest Update

Journal entry by Kathy Toole — Apr 4, 2024

Michael has been in extreme pain as radiation effects have caught up with him. We just went to his Omaha oncologist who gave him different pain meds. His pain is mainly in his back shoulder. It’s peeling, open sores and he is burnt from the radiation. His pain is now a 10 still and will be for a couple of weeks. Right now he cannot sleep or sit in a chair comfortably due to his back. We are trying to manage his pain. His arm still shakes when he tries to lift it again something new. Eating is not a priority but I still cook and provide anything he wants. Keith and I double team him with food and drinks. It is very difficult to watch your child no matter the age suffer and you feel helpless.

We will not have a scan until the end of May or first part of June. They are increasing his dosage for chemo. I cannot tell his tumor has made much of a change. From the back - the tumor has decreased but from his front the tumor is very much the same, still inflamed and in pain.

Continued prayers. His journey will be long. He is hanging in there. God has moved mountains and we pray that God will move more for Michael.

Thank you for all the prayers. Keep them coming!!

MMM 🙏❤️🙏

Read More of the journal titled "April 04, 2024"

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