Michael’s Story

Site created on March 20, 2010

Thank you for following Michael's story. We so appreciate all of your prayers and love for Strong Boy. We cherish each and every day with our Mighty Michael and praise God for the time He has given us, even as we pray for many more such days. When Michael was nine months old his head began to tilt to the side. Our wonderful pediatrician was concerned and ordered an MRI. As our sweet baby was brought back into the recovery room following the scan the radiologist said that Michael's doctor wanted to talk with us on the phone. Jon took the call and as I watched his face turn white and the tears begin to fall I knew our worst fears were being realized. Looking to the radiologist, with my own tears falling on Michael's precious head I could only whisper, is it a brain tumor? The doctor nodded and our nightmare began. That afternoon we rushed Michael up to Children's Hospital in Seattle where we soon found out that Michael's tumor was located next to his brain stem and wrapped around his cranial nerves. It was most likely cancer and he would need to have a risky operation to remove as much of the tumor as possible. We were sent home with steroids to bring down the swelling in Michael's little brain and to prepare for the procedure. On the Sunday before Michael's scheduled surgery his tumor began to hemorrhage and we almost lost Sweet Boy on the side of the freeway. However, God spared our son. Michael had an emergency tumor resection but remained in a coma for eight days. When he awoke he could not move or breathe on his own, resulting in another surgery to place a trach and feeding tube. We were told there was a good chance Michael would never walk, let alone run. But movement slowly started to return to his little body. The pathology report showed that the tumor was a slow growing, hard to cure form of cancer called an Ependymoma. Chemotherapy was not an effective treatment so a day after his first birthday Michael began a five week course of radiation to his brain. Finally, after three months at Seattle Children's Hospital Michael was sent home. Six months after his tumor hemorrhaged Michael's trach was removed and a few months later the feeding tube came out. God had performed a miracle for our boy. At the age of two and a half Michael started to walk and then run in a diagonal, hopping sort of way. Our amazing God had performed another miracle. For two years MRI's showed no new cancer growth or tumors. Then in June of 2006 a spot appeared on the scans. By October the spot had grown and we knew Michael's cancer had returned. Because of the nature of recurrent ependymomas we were left with few treatment options and no known cures. After much prayer Michael underwent a gamma knife surgery which stopped the growth of the tumor. We were told it was likely that Michael would continue to have more frequent recurrences until the cancer took full hold, no treatment options would remain and the end would come. For most children the cancerous ependymomas come back within two years, if not sooner. By God's grace, Michael miraculously went TWELVE AND A HALF years with no new signs of cancer. That just doesn't happen with ependymomas! In May 2019, doctors noticed a new spot on Michael’s routine MRI. By August the spot had grown and we were told it was most likely another recurrence. Only this time it appeared to be growing in the brain stem and once again involved the cranial nerves. So, we again embark on this awful journey, clinging to God’s promises and hope. And trusting and believing for another miracle for our Mighty Michael.


https://www.gofundme.com/f/mighty-michael039s-mission-to-beat-cancer?utm_medium=more&utm_source=customer&utm_campaign=p_na+share-sheet&rcid=081497b6a2654966a2b2ada2b06b255a

Newest Update

January 12, 2024

Journal entry by Jill Johansen —

FULL MRI RESULTS: New Finding

Jon and I have been trying to process all of the information we learned during Michael’s appointments yesterday.  

We got great news…Michael’s tumor bed is stable, no new Ependymoma cancer or spread! That’s a huge praise! 

However, we did find out that he has a new meningioma brain tumor that was likely caused by radiation. 

We knew 20 years ago, that if Michael survived this long we would begin to see the lasting effects of his terrible, but life saving treatment. 

And here we are. 

Michael’s Meningioma is not considered a cancer. Our neuro oncology NP called it a “brain wart” and said it is like a callous or mole. But it can, and has grown. There’s not a lot of margin for things to grow in a brain. 

Our team will be watching the spot. If it grows too much they will do surgery to remove it. 

Today’s overall news was good. No metastasis or new cancer. BUT we just added another big variable to the complicated mix that is Michael’s health. 

We have almost reached the 21 year mark of Michael’s brain tumor marathon. That’s a huge amount of time in the pediatric brain tumor world and we are so very grateful! 

Michael is a living miracle. We rejoice in that! 

And at the same time we are weary. 

Sleep clinic was on Tuesday. Talk of transitioning to the UW, high CO2 levels and trouble breathing highlighted the conversation. 

Yesterday was MRI, Oncology and Endocrinology. Talk of new tumors, stable tumor beds and possible treatments for extreme fatigue and adrenal issues ruled the day. 

In a few weeks we have a CT scan to check on the lung nodules and pre-op for vocal fold surgery at the UW. 

Then, on February 1, the surgery will take place with the hope that it will help Michael protect his airway and improve his voice quality. 

A week later we will be back in Seattle to see Pulmonary and will add in a sleep study or two in sleep clinic. 

All the while I will daily continue to watch for neuro symptoms that could signal meningioma growth. 

Although I feel tired right now, through all of this, I hear a constant whisper in my mind…

God is good all the time. All the time God is good. 

God gives me the strength to take each new step, to keep going.

He gives me the courage to make the phone calls and ask the hard questions.  

He gives me the peace to comfort and pour into my other kids who so often feel forgotten. 

And He reminds me that He is still bigger than cancer and brain tumors! 

Feeling better already knowing He’s got this!
Read More of the journal titled "January 12, 2024"
Patients and caregivers love hearing from you; add a comment to show your support.
Help Michael Stay Connected to Family and Friends

A $25 donation to CaringBridge powers a site like Michael's for two weeks. Will you make a gift to help ensure that this site stays online for them and for you?

Leave a comment of support for Michael

Did you know? A quick comment, no matter the situation (positive or negative), can boost morale by 28.2%.

Comments Hide comments

Load more comments
Read More Journal Entries

Show Your Support

See the Ways to Help page to get even more involved.

Personal Fundraiser
Support Links
Helpful Requests
Go to Ways to Help
SVG_Icons_Back_To_Top
Top