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Laurie’s Story

For complete information on the Connor Johnson Fund, please visit
ConnorsCause.com. Thank you!



"And now begins our journey to remission..." -Laurie Carter Johnson


Mike and Laurie (Carter) Johnson, were Libertyville High School sweethearts. They met and started dating their freshman year and got married after college. A few years later they were overjoyed with the birth of their first son,Connor. Two and a half years later, Connor got a little brother named Kyle (a.k.a. "Godzilla"). Their little family of four was the picture of health and these two little boys became the joy of their lives!

In early November 2011, Connor mentioned having bad headaches so Laurie took him to the pediatrician who recommended going to the eye doctor. An MRI was immediately ordered because the eye doctor saw pressure behind Connor's eyes.... this is the day that will forever change their lives. On November 9, 2011, after discovering an 8 cm mass in Connor's brain, Connor and Laurie were transported by ambulance to Children's Memorial Hospital. On 11/11/11, Neurosurgeon, Dr. Tomita and his surgical team removed the mass from Connor's brain with absolutely no physical or mental impairment. He emerged from surgery as the same 4-year old Connor we know and love. That was the first of many miracles that will happen for Connor and the Johnson Family.

The days following surgery, as Connor recovered remarkably, Mike and Laurie were hit with unbearably, devastating news. Connor's brain mass was malignant and described as a very rare and aggressive form of brain cancer occurring in about 1% of all pediatric brain cancer patients. Mike and Laurie faced overwhelming decisions, with very little information available regarding treatment outcomes, and very little time... They ultimately decided that St. Jude's was the best place for Connor to receive treatment, so a few days after Thanksgiving, they packed up the car and drove to Memphis to face the most frightening challenge of their lives.

During radiation, Mike and Laurie took turns being at St. Jude's with Connor while the other stayed back home to work and care for their 21-month old son, Kyle. In Memphis, treatment protocol for Connor was 6 weeks of radiation treatments to the full brain and spine, followed by four rounds of high dose chemotherapy with stem cell rescue. The physical, emotional, and mental exhaustion that they are enduried was difficult but they were astounded by the outpouring of support from family, friends, strangers, and the community.

Latest Journal Update

Hello summer, goodbye summer, hello fall

Wow.  So summer has come and gone since I lasted posted here. I didn’t realize it had been so long. I have been better at posting on the “Connor’s Cause” Facebook page because it is easier but I know not everyone is on there so I will try to be better at posting here.

It was a nice summer. We were able to make it up to Minnesota to see my grandparents, aunts and uncles, cousins, second cousins, etc. It was so nice to see everyone but Anna was sick and made the drive so difficult that Mike says we will not be making that drive again until she is18. :) Then Connor, Mike and Kyle were in the Vernon Hills and Lincolnshire 4th of July parades to promote the St. Jude Dream Home that is being built in Gregg’s Landing.  They had a blast throwing out candy to everyone! The first weekend of August we had Anna’s first birthday party.  I still can’t believe she is already one and making herself quite known in our house.  Connor took a book away from her and she wagged her finger at him and yelled her baby gibberish to make herself clear.  We have no worries that this girl will hold her own with her older brothers and likely the world. 

The day after the party, Connor and I headed down to St.Jude to test whether his body was producing growth hormones or not.   Given that he has only grown about an inch since being diagnosed, we were pretty sure that it would show that he isn’t producing them and we were right.    This is another side effect of radiation so it wasn’t unexpected.  St. Jude worked with our insurance (since this is one of the few things they do not cover) and he was approved to receive growth hormone shots.  We started them two weeks ago.  He receives one shot each night before bed at home by Mike or I.  They are subcutaneous shots rotated each day in his arms, thighs, back or stomach.  While the first couple of nights were rough, he has accepted that he needs these to “get big like Daddy”and he is amazing us as usual.  He already helps wipe the alcohol swab over the area and dials up the medicine (it is in a “pen”).  He will receive these daily until his growth plates close (between the ages of 16-18).  While this is not ideal, so far there have been no negative side effects and we are grateful that he has this chance to grow.  They said we should see some growth in the next 6 months. 

We go back October 27 for his next scan. His last scan was in April so he has officially graduated to 6-month scans.  That is great and scary all at once.  November will be 3 years since diagnosis.  Three years since we were told by Children’s and St. Jude that Connor had a 20-30% chance of being alive in 2 years. Hearing that he had a brain tumor was devastating but hearing those odds was worse.  September is Childhood Cancer Awareness month and I haven’t done enough to raise awareness in honor of our miracle…our hero… nor for the 46 kids a day that hear that they have cancer…nor for the 7 kids a day that lose their battle. It isn’t right that these innocent children have to fight so hard. It isn’t right that the average years of life lost is 69 years.  It isn’t right that over 80% of the survivors will suffer from long term chronic illnesses. Connor has a shunt due to extra fluid in his brain, hearing loss from chemo, wears orthotics due to muscle weakness from chemo, has learning disabilities from radiation, takes thyroid medicine due to radiation and now gets daily shots to grow.  And yet he is one of the few lucky ones.  He is not only alive and cancer free, but he is also running around with his friends, playing in sports, joining cub scouts and generally doing all of the things that first grade boys should be doing.  Two weeks ago he fell from some equipment on the playground during recess and cut his cheek/eye area.  He ended up with an internal stitch, 6 external stitches and glue in the corner of the eye where they couldn’t stitch.  He will now have another scar but at least this isn’t from a surgery due to cancer.  And it reminds us that we can’t protect him from everything and that we are lucky that he is able to run and play on his own and.  So many kids either on treatment or off treatment can’t run, can’t go to school, can’t eat on their own, and can’t play on their own due to cancer. It isn’t right.  It isn’t ok that these kids are robbed of their childhood and sometimes of their future.  It isn’t right that families are torn apart to seek the best treatment to save their child’s life and have to leave other children behind.  It isn’t right that the siblings have to deal with and learn so much at such a young age.  Their innocence is taken as well.  And yet again, we are the lucky ones.  Our son is doing amazing.   

Connor will turn 7 this weekend.  Tomorrow is the end of Childhood Cancer Awareness month.  Please help us spread awareness that kids get cancer too and not enough is being done to come up with better treatment options to give them a better chance to survive and with less long-term side effects.  Less than 4% of the National Cancer Institute’s budget goes towards pediatric cancer.  In terms of dollars, $26.4MM goes towards research for all types of pediatric cancer while $584MM goes towards breast cancer.  The American Cancer Society funds less than 1% toward childhood cancer research.  Pediatric cancer is woefully underfunded.  It is up to us to help make up that difference.  Our kids deserve it… they need it.   In honor of Connor’s birthday,please donate to St. Jude or St. Baldrick or CureATRT (the cancer Connor had) or Alex’s Lemonade Stand or Make A Wish. These are all great charities that actually use the funds to help kids.  We didn’t know about most of these charities 3 years ago and hopefully you will never know them as intimately as we do, but you can still help.  Here is Connor’s page for St. Jude:     fundraising.stjude.org/goto/Connors.cause

Thank you again for your support and prayers!  We look forward to posting another “ALL CLEAR” on Oct. 28!
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Comments

4 Comments

Jen Bevan
By Jen Bevan
Your incredible story touches my heart. Happy belated birthday, Connor!
Gabriele Ertmann
By Gabriele Ertmann
Thank you for your update. Your fight goes on and on as well as your strength. Always keeping you and other children who fight this in my daily prayers.
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Ann Danner
By Ann Danner
Blessings to Connor and to the whole Johnson family for such good news. We will continue to fight for Connor and all of the kids of St. Jude! See you at the Dream Home soon!
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linda brushaber
By
So happy to hear everything is going great for Connor! We think of him often at SchoolHouse and would love for you to bring him for a visit!! He is one amazing little boy!!
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