Hello,My name is Cathy Reid-Satchell and I am a close and personal friend of Sharon, John & Johnny Van Kemp. I first met Sharon through our former pastor while Johnny was towards the end of his 1st battle with Leukemia. Sharon and I became fast friends and since then, I have grown extremely close to the entire family.
I have written the story below as I have experienced this long journey to cure Johnny alongside the Van Kemp's. By starting this GoFundMe campaign...it is just one of the many ways that I can help my friends by donating myself and asking those with giving hearts to donate as well. Please consider donating as you read Johnny's journey.
Johnny’s cancer is back” are the words that I truly did not expect to hear only just six months after Johnny completed his second fight for his life to beat ALL - Type B Leukemia.
Johnny was first diagnosed with leukemia in April of 2012
. He ended treatment after 3+ years in June of 2015
and fought with such determination and faith. The Ironman of Summerfield knocked out Leukemia! Johnny’s parents, Sharon & John, could breath again. They all enjoyed 10 months of “normal life” before their lives came crashing down on them once again.
In April of 2016 they received news that the cancer had relapsed
and Johnny was thrown back into the fight for his life. After two years of harsh treatments, Johnny showed all who know him what a strong & faithful young man he was. By May of 2018, the Ironman of Summerfield's record was now 2-0 against his tough opponent & the Van Kemp’s were on top of the world. John & Sharon planned a summer of fun for Johnny who had spent the better of six years in and out of Brenner’s Children Hospital. They wanted Johnny to enjoy every minute he could before he became a High School freshman in the fall and they succeeded - big time.
Refreshed and renewed - Johnny became a proud Northern High School NightHawk. He completed the 1st portion of drivers training and enjoyed his first Homecoming. Johnny became a "young man" before we knew it. His eyes were bright, his smile infectious, his faith even stronger.
Monthly check-ups are the norm for someone who completes cancer treatment...and appointment after appointment. Johnny and his parents were told that his body was getting stronger and stronger.
During his 6th month check-up, October 23, 2018
- Johnny heard the news he never, ever, ever thought he would hear again. “The cancer is back.”
Shock. Horror. Disbelief. Tears. Every emotion overtook Johnny and his parents. Their lives shattered in a million pieces...again. AGAIN!
For the third time in Johnny’s short 14 years
, they met devastation face to face. Pure devastation.
From the outside, it may look to you like the VK’s have the best in life. Yet, if you were able to peek through a window of their life, you would see how broken beyond belief they are. John & Sharon have watched their only son, who began life on this earth fighting for his life as he was born pre-mature, endure once again intense harsh treatments - trying to kill the bad while not destroying all that is good inside of him. They have watched their son sit on the sidelines of life as others his age experienced the fullness of childhood & become teenagers. They have watched their son sit in the barbers chair to have his head shaved twice already and see Johnny’s self esteem fall on the floor along with locks of his hair. They have held Johnny’s head while sickness overcomes him and run to the “chemo closet” in their home to clean up the mess in the dead of night. They have seen their son look them in the eye and cry out to them - “I just want to survive”
& “Save me.”
To say these past 6+ years have been magical - the farthest thing from it.
This new fight, his third
, is going to be Johnny’s toughest yet. Your prayers along with words of hope & encouragement would be greatly appreciated as we walk along side Johnny. Pray that God will give him the strength he will need to get through this next year(s)in order to reach the goal of healing. Pray that God will cradle Sharon & John with love and guide them as they make the best decisions for Johnny... as well as staying faithful as they endure the pain of witnessing their son fight through this battle once again.
As I mentioned, this is going to be the toughest of fights that Johnny & his parents have had to face. It is going to take all of their family, friends and community’s support to keep them lifted up. The day he learned that his cancer had returned, October 23rd of this year (2018), he and his parents were told to go home immediately, pack some things and return to be admitted to the hospital. They were told that he would have to remain in the hospital for the next 26 days in which Johnny would receive his 3rd chest port in order to begin harsh chemotherapy. Johnny completed those 26 days but not easily. He experienced the expected side effects along with losing over 20 pounds, became extremely weak and frail, and lost a good amount of his hair. He contracted some type of infection in his sinus area which gave him extreme pain in the right side of his face. After many tests and medications, the infection subsided and non to soon. The day we brought him home, he could barely walk.
Since he returned home he has begun to regain the weight he lost and is slowly building his strength. Of course his mother Sharon and father John are doing whatever they need to do to get him as strong as possible for the next phase of treatment. While in the hospital, the Van Kemp's learned that Johnny could be a candidate for CAR - T Immunotherapy which would take place in Philadelphia. After many discussions and the meeting of certain requirements, Johnny was accepted at the Children's Hospital of Philadelphia (CHOP). Thank You God!!!
On December 3rd, Johnny and his parents traveled to CHOP with the aid of the caring people at HondaJet. They spent several days there that included a day full of meetings with the medical team, tests and the extraction of his own T cells which would be sent off for harvesting before they returned home. Upon returning home Johnny was suffering extreme leg pain which eventually was diagnosed as Shingles. This landed Johnny back into the hospital for over a week and as he described - this was the most pain that he has ever felt. Johnny was able to come home for Christmas which was an amazing blessing. Friends from Total Bliss had come and decorated the house to surprise him upon his arrival. The family spent the remainder of December and January of '19 waiting for the phone to ring. Waiting for the news that Johnny's new T-cells were ready and be given the date to return to CHOP for infusion. That call came on January 16th and the family learned that they were to return to Philly to begin the next phase of treatment on February 11th.
Johnny began with 3 straight days of pre-infusion chemotherapy in order to get his body ready to receive his new T-cells. The remainder of the week was filled with mandatory testing along with OR procedures. On February 19, 2019 Johnny received the infusion of his new super charged T-cells.
The Van Kemp family remained in Philadelphia where Johnny could be monitored for the next 4 weeks. Johnny celebrated his 15th birthday in Philly and received hundreds of birthday cards from all around the world. On March 28, 2019 the family returned home once again by the caring folks at HondaJet. Johnny received a welcome home surprise that he will never forget. https://www.facebook.com/WFMYNews2/videos/783744248654564/?t=21
Since then, Johnny has enjoyed getting back to school and ever so determined to complete his freshman year of High School. He has begun to gain weight and build his strength back up. The end of May Johnny and his parents would return to Philly for his 3 month check-up. This testing would reveal how effective his new T-cells have been working. Even though initial reports showed good progress, on June 4th they received the news that they had found a few B cells deep in Johnny's bone marrow. For the first six months after the initial infusion of the T-cells, no trace of B cells is what they were hoping for but now that they had been detected - more treatment is needed.
Of course this was another hit to the system as Johnny was so looking forward to enjoying a full summer without treatment. A full summer with friends. As determined as Johnny is not to ever let cancer define him, he set out to get his drivers license (learners permit) before he left for his second T-cell infusion. Well - he did it!!
On June 9th, Johnny and his parents traveled back to CHOP where he would have to endure 4 straight days of harsh pre-infusion chemotherapy. He completed those treatments which left him weak, nauseous and with a weakened immune system. This would force them to stay inside their temporary home in order not to put Johnny at risk of illness until June 17th when Johnny returned to CHOP to receive the second T-cell infusion.With hopes of returning home to North Carolina the end of June, Johnny will first have to endure final testing. He will then receive regular testing at his home hospital in hopes that the tests will not detect any B-cells in his body. It is crucial that none are found as this would be the indicator that they need that this new batch of T-cells are working to get him to the goal of being forever cancer free.
August 2019 - Johnny's scheduled testing detected B-cells in his body. Although the cells tested non-diseased, after many meetings with his medical team it was suggested that Johnny endure a second T-Cell procedure in Philadelphia to prayerfully be what his body needs to stay cancer free forever. As he began his 10th grade school year, Johnny and his parents were anguished with the decision whether to put him through yet another difficult procedure and treatment that would diminish all of the strength that Johnny had gained since the last treatment in June of 2018. Johnny looked the healthiest he has since he was 7 years old.
September 10th, 2019 - Johnny endured yet another surgical procedure to implant a temporary line in his neck. After recovery Johnny spent the next 5 hours laying perfectly still where his blood is drawn out of his chest port and blood cells are organized into groups. This process is called aphaeresis. Johnny's T cells are removed, while the other blood cells are then returned to the body leaving him exhausted, weak and nauseas.
The family will return home while Johnny's T cells are sent to a specialized lab where receptors (or hooks) are added to the T cells, programming them to create the patient’s particular CAR T cell therapy. This process took 6 weeks last year and the family will nervously wait again until they receive the call to return to Philly for infusion procedure.
Of course, Johnny will get back to 'living' his best life until his parents give him the news that it's time to return to CHOP.
Your prayers are most needed as we once again prayerfully ask God to make this next phase the final cure.
If you feel led to donate to Johnny’s Leukemia Fund, it would most certainly help ease the financial burden in which the family has carried for the 7+ years of medical costs.
Showering them in love... especially in prayers and your funds, so graciously donated to Johnny's Leukemia Fund, will help remove the added stress so that John & Sharon can focus soley on Johnny and winning this fight for his life.
If you would like to stay up-to-date on Johnny’s progress, you may join the “Prayers for Johnny Van Kemp” on Facebook or Johnny’s Caringbridge page at: https://www.caringbridge.org/visit/johnnyvankemp.
You can also follow Johnny's story on his Facebook page: https://www.facebook.com/jvkironman
If you donate to Johnny’s Leukemia Fund on GoFundMe, you will receive regular updates directly as they are submitted. Johnny’s Faith is strong and he knows God will see him through this.
In gratitude and love,
Friend of Johnny, Sharon & John Van Kemp