Ross Riley Testimonial – August 2009
by Kim Kenady – Mother
Ross’ story began several months before his diagnosis. His signs and symptoms started as being tired a lot and a loss of appetite. We didn’t think that was unusual because he had just started taking Strattera for ADHD and those were some of the side effects associated with it. As time passed he complained that his legs hurt and we told him it was probably growing pains because he was getting taller. He had some bruising on his legs, but he was an 8 year old boy so we weren’t concerned about that either. The big onset of everything was in November 2007 while in gym class. Ross was hit in the eye with another classmates head and the results were not good. I received a call from the school saying I really needed to come look at it, so I left immediately. We have never seen such excessive bruising and swelling. He was taken to Quincy Medical Group where they did a Cat Scan to be sure nothing was broken and to be sure everything around the eye area was still attached properly. All checked out okay so we went home. A week or two passed but there wasn’t any improvement in the healing of his eye. Ross began to have night sweats and frequent unexplained fevers. His teachers said he was not himself at school and would sometimes fall asleep in class. Ross also found a couple of bumps on the lower back part of his head and called me in to feel them. A few nights later he was in the tub and I noticed he had tiny red spots all over his body, which we now know are called Petechiae, due to low platelet levels, which is why his eye was not healing. Now I was concerned and knew something was wrong. I took him to see Dr. Go first thing the next morning. After doing a CBC and other lab work it was confirmed that Ross had Leukemia. It was December 4, 2007. We will never forget that day or the impact it had on the whole family hearing such a diagnosis. We were told to go straight to St. Louis Children’s Hospital that day and we arrived in the ER by 10:30 pm. They started in right away and after more detailed tests confirmed the type Ross has is Acute Lymphoblastic Leukemia (ALL). The next day Ross had surgery so a port could be put in for receiving his chemotherapy to prevent him from being stuck with a needle all the time. He also received several transfusions of platelets and blood to replenish what had been lost. Ross was in PICU for 2 days then transferred to 9 West Hematology/Oncology floor. His first initial hospital stay lasted 23 days before he was released to come home. There are four phases of treatment: Induction, Consolidation, Delayed Intensification and Maintenance that will last 2 to 3 years before his treatment is complete. During his course of treatment Ross has also had bone marrow aspirations and lumbar punctures. The lumbar punctures are used to find out whether there are leukemia cells in the central nervous system. He does not, but to be sure it does not go there he had radiation therapy for 2 weeks and during his lumbar punctures they do intrathecal chemotherapy, which goes right into the spinal fluid.
During certain phases of treatment we were taught how to infuse Ross’ chemo through his port at home to save us trips to St. Louis. Besides Ross’ first stay in the hospital he had 4 other stays for treatment lasting four days each and 1 because of chicken pox/shingles. Through these phases of treatment there were many tough times watching Ross struggle, and many questions he asked that a parent hopes to never hear from their child. We explained to him that God would not allow any harm come to him and that thousands of people that love and care for him where praying everyday and you could see the peace fall over his face. All the nurses, doctors & lab techs would tell us what a great attitude and personality Ross had during all of this. He is a strong, compassionate and amazing boy. I tell him all the time how brave he is and how proud I am of him. He is our hero. This journey has been a day to day walk. He has been in the last phase of treatment for a year now, which means he only goes to St. Louis once a month for chemo and every 3 months has a lumbar puncture. The rest of his chemo is given at home in a pill form. He is doing great and life has returned to a new normal. We thank God, the doctors and nurses at Children’s Hospital, our employers, family, friends and the community for all of your love and support through this life changing journey. Because of all of you we did not walk it alone.
Kristopher Schreacke – September 2007
Narrated by: Carrie Bauer Schreacke - Mother
It all began on Saturday, August 16, 2003 when Kristopher, then 3 ½ years old, complained of left shoulder pain just after he went to bed. As a mom, I knew something wasn’t right. We took Kristopher to Blessing E.R. and our nightmare began. After a series of x-rays, the doctors discovered a mass on Kristopher’s chest. Kristopher was diagnosed with cancer.
We spent the next 36hrs in a daze. We met with our family doctor on Monday, August 18, 2003 at 8:30a.m. By 11:00a.m., we were on our way to St. Louis Children’s hospital. Kristopher was seen in the hematology/oncology clinic by Dr. Robert Hayashi and Dr. Aarati Rao. The doctors repeated blood work and completed a bone marrow aspiration to diagnose Kristopher with T-cell Leukemia. He also presented with a menianstinal mass on his chest, which is common in most T-cell leukemia patients. We were admitted to the Pediatric Intensive Care Unit and started our cancer journey.
Looking back on Kristopher’s health in the months prior to his diagnosis, he had symptoms, enlarged lymph node, fevers, bruising, but the doctors never did any blood tests to look for anything. The ear nose and throat specialist we took Kristopher to did not think the lymph node was large enough to biopsy and the fevers and bruising were left unexplained. It was very frustrating as parents to know something wasn’t right with your child, but because of Dr. Stoops, emergency room physician, Kristopher’s life was saved.
The first few months after diagnosis were a blur to us. I was 39 weeks pregnant with our second child when Kristopher was diagnosed with leukemia. Kristopher spent the first two days in the PICU. Parents were allowed to be in their child’s room, but could not sleep there. It was a very exhausting time. Because of the menianstinal mass, the surgeon could not place Kristopher’s broviac in his chest. His first broviac was placed in his groin area. The broviac placement was vital to his treatment. This device allowed the doctors and nurses to administer medication without sticking Kristopher with a needle. His first chemo treatment was on Tuesday, August 19, 2003 at 10:00pm. Amy Hermann, Kristopher’s primary nurse at St. Louis Children’s hospital, became part of our family that night. She was very patient with Kevin and me. She explained the medications to us and was very comforting thru the entire night. She helped Kristopher endure the side effects of the treatment. After the doctors felt Kristopher was stable, we were transferred to the oncology floor (9West) at St. Louis Children’s hospital. Kristopher’s treatment plan called for hospital stays for IV chemotherapy every three weeks, with each stay lasting 3-6 days, for the initial phase of treatment.
Our first hospitalization lasted 10 days, with Johnathan Kent Schreacke arriving on August 26, 2003 at Barnes Jewish hospital. Kristopher underwent surgery to replace the broviac in his chest on Wednesday, August 27, 2003, so he could be discharged to come home on Thursday, August 28, 2003. We were home for two days and back in St. Louis Children’s because of fever. Anytime Kristopher develops a fever over 100.5, he has to be hospitalized to ensure he does not have a bacteria infection. Over the course of the next nine months, Kristopher was hospitalized more than he was at home. Kristopher continued weekly visits to the oncology clinic and multiple hospitalizations for chemotherapy, blood and platlet transfusions, and infections. This was a very difficult time for him. He felt sick all of the time. He had numerous oral medications to take each day, weekly methotrexate infusions and weekly blood work. He was secluded from everyone because we were afraid he would get some type of infection. During this time, Kristopher’s ANC remained below 500. One month after treatment started, Kristopher received the good news that he had achieved remission status. What a blessing!!!
We were not able to allow Kristopher to be around people other than immediate family until April 2004. Kristopher entered the next phase of treatment, consolidation, which was not as intense as the initial phase. He felt better, was able to play outside, and be around friends and family again. On March 8, 2005, we learned that Kristopher had a CNS relapse, seventeen months into treatment, which was discovered by a routine spinal tap. He had been experiencing some headaches that were severe, but his counts were still normal. We were told his only chance at survival was a bone marrow transplant. Before Kristopher could undergo the transplant, the doctors changed his treatment plan to put him in remission a second time. The doctors began the donor search immediately. Your sibling has the best chance to be your bone marrow match. In Kristopher’s case, Johnathan was not a match, but the doctors could have used the cord blood that we saved, if necessary. The cord blood was not a perfect match, but it was better than no match at all. After searching the national bone marrow registry, we learned there were no perfect matches. The doctors were going to have to go to the international registry to find a match for Kristopher. After three months of searching, a perfect match was found. Kristopher’s “blood brother”, as we like to call him, was a 24 year old male from the United Kingdom. We felt so blessed because the doctors felt this was a perfect match for Kristopher. One June 8, 2005, Kristopher went down for his last chemo treatment before transplant conditioning and Dr. Rao found a small match of chickenpox on Kristopher’s back just above the tailbone. This caused Kristopher’s treatment to be delayed. After a routine spinal tap, the doctors discovered that Kristopher had not achieved a second remission from the chemotherapy. Dr. Rao felt it was in Kristopher’s best interest to undergo cranial radiation. This was his only hope of achieving a second remission. On June 13, 2005, Kristopher started his daily cranial radiation. We stayed in St. Louis for the next two weeks, coming home only on the weekend. On Tuesday, June 28, 2005, Kristopher entered the Bone Marrow Transplant unit at St. Louis Children’s hospital. Kristopher’s transplant conditioning regimen called for six total body radiation treatments, which was completed twice a day for three days, and was followed by three days of chemotherapy. He had an off day on Monday, July 4, 2005 and his transplant took place on Tuesday, July 5 at 10:00a.m. For the next three weeks, Kristopher was very sick. He was having an allergic reaction to some of the necessary medications and it was very difficult to figure out which ones were causing the reaction. His face swelled to the point his eyes were swollen shut. Kristopher had his days and nights mixed up and because of his allergic reaction, his skin itched continuously. He had to take daily baths to ensure his skin remained as germ free as possible. Johnathan was not allowed inside his BMT unit. He could only see Kristopher from behind the glass doors. It was a very stressful time for all of us. We had to move the family to the Ronald McDonald apartments in St. Louis, Mo until Kristopher was released to come home to Quincy on October 15, 2005.
Kristopher developed Graft vs. Host disease of the skin, which caused his skin to break down and peel to the flesh. He has been battling Graft vs. Host disease of the skin since transplant. He has had to be very careful to keep his skin moist and clean. The number one cause for concern was infection because of the skin peeling. He was hospitalized numerous times over the next 100 days because of staff infections.
With his ANC still below 1000 on a consistent basis and his continual battle with GVHD of the skin, the doctors felt home schooling would be best for Kristopher for kindergarten. We worked with the Quincy Public Schools to have a teacher, Mrs. Holzgrafe, come to the house everyday for 1 ½ hrs. Kristopher did well with his schooling and has been able to attend St. Peter’s School for 1st and 2nd grade. Kristopher’s skin has continued to heal, but the GVHD is still active. We have been able to control it with anti-rejection medications. Kristopher is still on every medication he started with because of his transplant. He is now considered to have chronic GVHD of the skin. He takes 15 medications daily to keep the GVHD under control. The GVHD has been a necessary evil for Kristopher’s survival. For those children who have leukemia, there is “Graft vs. Leukemia” affect that helps leukemia patients achieve continued remission. It increases Kristopher’s chances of survival. It was so important that the doctors were going to induce GVHD if it did not happen naturally.
Kristopher has developed bone fractures, glaucoma and cataracts because of the long term use of the steroid, prednisone. This medication is vital for keeping the GVHD under control. Kristopher is considered to be steroid dependent and responsive. We have finally been able to drop his dose of steroids after two years, but will need to continue the medication indefinitely.
Kristopher lives with constant pain related to his vertebrae fractures and he has developed stomach problems as well. He constantly feels nauseated and his stomach cramps. The hardest part for Kristopher is not being able to do “normal” 7 year old things, like playing ball, skating, and participating in gym class. He feels isolated because he is not physically able to keep up with his peers.
In spite of all this, he continues to get better and lives life to the fullest. He loves John Deere and Caterpillar, playing with friends and visiting with family. He still has to be careful about germs and keeping his skin healthy, but he is 815 days post transplant and counting. His love for life is motivating. He has persevered thru 4 years of life altering changes and hopes he can one day be cancer free. He is proud to say he is a cancer survivor.
We have been so blessed with the help of family, friends, co-workers and many people we have not even met. The constant prayers and support have helped us thru this difficult journey. The doctors and nurses both in Quincy and St. Louis Children’s hospital have been tremendous. Without their continued care, Kristopher would not be with us today. But most importantly, our family will always remember the selfless gift of life our United Kingdom friend gave. Without his donation, Kristopher would not be alive today. We continue to thank God everyday for Kristopher’s continued remission. Thank you to all of those who keep Kristopher and our family in your thoughts and prayers.
Gregg Teel -- August 2007
In July of 2003, I was shocked to find out that some recent blood work came back abnormal. After a retest, they confirmed my platelet count of 1.4 million (normal range is 175,000 to 350,000) with slightly elevated red and white counts as well.
Dr. Kimber, my general practitioner, contacted Dr. Arrambide who had recently moved to town to join the Cancer Center at Blessing Hospital. She had an initial diagnosis of Polycythemia Vera (PV) or Essential Thrombocythemia (ET). Later testing confirmed the diagnosis of ET. While still in the hospital my family tried to research this disorder to see what we were facing. After finding much information at many unreliable websites we then found the MPD Foundation.org, sitewhose goal is to search for a cure for Myeloproliferative Disorders which consists of the following Polycythemia Vera, Essential Thrombocythemia, and Myelofibrosis. Mr. Robert Rosen, a MPD patient himself and the President of the foundation, started this organization in 1999. This site and The Leukemia & Lymphoma Society, allowed us to find others with similar disorders and to contact them on how they treated and coped with the disorders and the side effects of the medicines used to treat them.
There have been approximately three or four different approaches / medicines to treat the three different MPDs. I started on one the three treatments for the first couple of years with some success but at the same time dealing with the side effects that accompanied this treatment. In 2005, a new study was being released that made us change our thoughts on the medications of how to treat my ET. I switched to a different medicine that had the ability to reverse the marrow condition. I struggled with the side effects of the new medication for several months. This appears to be one of the main reasons this medication is discontinued by many. After debating whether to discontinue this new treatment due to the side effects at only 1/3 the dose that they expected I would need to be taking, we started to see significant improvements in my blood counts. Eventually my counts started to go too far in the opposite direction, so I was able to reduce my medication and have recently stopped the medication all together. Needless to say we feel blessed to have access to the doctors at the Blessing Cancer Center and the research funded through the MPD Foundation and The Leukemia & Lymphoma Society. This allows me to focus on other aspects of my life.
When Dr. Arrambide explained the upcoming walk- MatchMakers of Hope, my wife, daughter and I were more than happy to help. Four years ago if someone told me that I would no longer need medicine and that I would be helping others learn about blood disorders and raising money for such a great cause I would never have believed it.
The MPD Foundation along with organizations like The Leukemia & Lymphoma Society has worked diligently to bring awareness to other blood cancers in recent years. Research dollars have been raised and huge strides have been made in the last 2 to 3 years.
Kayla Dinkheller -- August 2007
KAYLA WAS 21/2 WHEN SHE WAS DIAGNOISED WITH "ALL". WE WENT TO THE CLINIC, BECAUSE SHE HAD BEEN VERY CRABBY LATELY AND I COULDNT SEEM TO DO ANYTHING TO HELP HER. THE CLINIC RAN BLOOD TEST AND SURE ENOUGH HER BLOOD COUNT WAS NOT RIGHT. SHE EITHER HAD A VIRUS OR WAS ANEMIC. THEY SENT US TO THE EMERGENCY ROOM RIGHT AWAY. KAYLAS DAD WAS AT WORK SO I HAD TO CALL HIM AND HAVE HIM COME HOME. I WAS CRYING AND VERY UPSET AND MY SICK LITTLE GIRL PATTED ME ON THE BACK AND SAID MOMMY I'LL BE ALRIGHT. SO THE EMERGENCY ROOM SENT US OFF TO SAINT LOUIS CHILDRENS HOSPITAL, TO SEE WHAT WAS WRONG WITH KAYLA. THEY WANTED TO FLY HER, BUT I BEGGED TO TAKE HER MYSELF AND THEY GAVE ME MY WISH. KAYLA WAS LOSING BLOOD AND READY TO GO INTO A COMA, HAD I NOT TAKEN HER TO THE DOCTOR WHEN I DID. WHEN WE GOT TO CHILDRENS HOSPITAL KAYLA HAD TO HAVE BLOOD TRANSFUSIONS ALL NIGHT. THIS WAS THE WEEKEND SO THAT WAS ONE OF THE LONGEST WEEKENDS WE EVER HAD WAITING TO FIND OUT WHAT WAS WRONG WITH OURLITTLE GIRL. KAYLA HAD ALL KINDS OF TEST DONE AND SHE HAD" ALL", THIS MEANT WE WOULD UNDER GO MANY CHANGES IN THE NEXT 2-3YRS. WE HAD SURGERY TO PUT A PORT IN FOR 30 HRS OF CHEMOTHERAPY EVERY OTHER WEEK. KAYLA WAS A CHAMP. SHE NEVER CRIED, YELLED OR SCREAMED. SHE DOESNT EVEN REMEMBER ANYTHING ABOUT BEING SICK WHEN SHE WAS LITTLE. ALL SHE KNOWS IS THAT THE LORD MADE HER WELL AND THE PEOPLE IN QUINCY, IL. LOVED HER DEARLY AND HELPED OUR FAMILY ANY WAY THEY COULD. THE GREENLEIFS FROM MENDON VOLUNTEERED TO HELP US AND WERE THERE EVERY STEP OF THE WAY.
KAYLA IS NOW 12 YRS IN REMISSION AND 17YRS OLD AND IS GOING TO BE A JUNIOR AT QHS. KAYLA DINKHELLER
Quentin Karlstrand – August 31, 2006
The short version of a very long story is that, thanks to the
unselfish
generosity of an anonymous perfect-match bone marrow donor living
in another country, I have been given a second chance at life.
After being diagnosed with advanced stages of Chronic Lymphocytic
Leukemia (CLL) and having undergone eight months of chemotherapy
without getting a lasting remission, I had a bone marrow stem
cell transplant at Barnes Hospital in St. Louis on April 4th of
this year. It was not easy. We lived in St. Louis for 79 days
while I recovered from the transplant procedure. The good news
is that because of this transplant my diseased bone marrow has
now been replaced 100% by the bone marrow of my donor.
I am doing very well now and have been able to return to work
full time and have even been able to return to my Quincy Rotary
Club. It sure feels good to be back home.
I am so very grateful for the overwhelming support and encouragement
I have received from family, friends, my employer, many churches
of all
denominations and the loving and caring citizens of our Gem City.
Your
prayers, cards, emails, and visits kept us going during some very
difficult
days and were very important to my wife and me.
I encourage each and every one of you to consider giving the
gift of life to someone else by participating in Rotary Club’s
“Matchmakers of Hope”
Walk on Sept. 30th in Washington Park and the Rotary Club Bone
Marrow Drive on Feb. 3rd, 2007 at Blessing Hospital Auditorium.
Who knows, there is a chance that you can save the life of another
just as someone unknown to me has saved mine.
-- Quentin Karlstrand
John McCarthy – August 23, 2006
Hello, my name is John McCarthy and I have cancer, Mantel Cell
Non-Hodgkins Lymphoma Stage 4. I got a bump on my neck in August
of 2004. We thought it was a bug bite. Ha – the biopsy told the
doctor it was a very bad type of cancer. The prognosis was 3 to
6 months to live. *!?
I went to M.D. Anderson Cancer Research Hospital in Houston, Texas.
I received my treatment for 7 months and got home in March 2005.
My cancer team was made up with the following: A positive attitude;
my God; my family; my doctors. I believe your own team is the biggest
help you can have in making your recovery. My doctors informed me
I was into remission in November 2005. You can do it. It takes a
good attitude, God, family and a great medical team.
You Can Do It!!!
John
Olivia Jarvis Testimonial - by Heather Jarvis (mother)
It all began about two weeks prior to Olivia's diagnosis, when
she seemed to have cold like symptoms. She developed a fever
and then began to become tired and wanted to lie down and sleep
a lot. She just had started Preschool and it was Culver Stockton
Parade time. She begged us to let her be on a float with her
friends for the “Happy Time Preschool”. We let her ride, even
though you could see in her eyes she did not feel well at all.
That next week we took her to the Walk in clinic at QMG, where
she was diagnosed with Bronchitis. Her symptoms did not seem to
go away, so October 17, 2003 we saw our Pediatrician, Sue Grigsby
at the Quincy Medical Clinic. They did a CBC and other blood work.
A few hours later, it was not good news that Dr Sue had to give
us that night. She said Olivia either had Leukemia or Severe Anemia.
Her platelet count was very low, which was critical, but they let
us drive her to St. Louis Children's Hospital. Immediately Children's
ER knew that she had Leukemia just by asking questions and looking
at her. After several tests, she was taken to the 9 th Floor (Oncology/Hematology)
where the next day surgery was done to put in a Port and a Bone
Marrow Aspiration test was preformed to see which kind of Leukemia
she had. Fortunately Olivia had the best kind, the most treatable,
ALL-Acute Lymphoblastic Leukemia. Olivia was 4 at this time.
From there we were in the hospital initially for one month with
that being the heaviest and hardest phase of Chemotherapy. After
being in the hospital for a month we got to come home November
3, 2003 only to return to Children's three days later. Olivia had
developed a fever. The infection cleared up and her counts were
good to come home.
On November 18, 2003, one month after the diagnosis of Cancer
we received good news that Olivia was in Remission! We had been
blessed to move on to the next stage, Consolidation. We made trips
to Children's every three weeks and spent two nights and three
days getting Chemotherapy. In December 2003, the week before Christmas,
Olivia had a very bad bacterial infection that took a week's stay
and five antibiotics to finally help her get over it. She was able
to come home for Christmas, which was a blessing to be all together.
We had Home Infusion Care during our Christmas holiday, but at
least we were at home.
Another Hospital stay was on April 8, 2004 when Olivia had Pneumonia.
During our stay she had an allergic reaction to a drug. It was
a very scary time.
After the completion of Consolidation came Maintenance. This was
less intense Chemotherapy, which started April 13, 2004 and ended
April 18 of 2006. Olivia would receive a spinal tap and chemotherapy
to her brain, along with a shot of Methotrexate every three months
at Children's Hospital. She went to the Blessing Cancer Center
for weekly Methotrexate shots and blood tests. When the spinal
taps and chemotherapy to the Central Nervous System were complete,
Olivia would only have a CBC done every two weeks and Methotrexate
shots every week. During this time Olivia bonded with the doctors,
nurses and staff at the Cancer Center. She was treated like a “Princess” the
whole time. Not only would she get gifts each week, but her little
sister Abby would get them too. We cannot say enough about the
compassion the people have at the Blessing Cancer Center.
The end of chemotherapy treatments (2 ½ years) was April
12, 2006 at Blessing Cancer Center, with Olivia being “The Princess
for the Day”. Family, friends, nurses, doctors, staff, and media
were all there to wish the very best for our Princess.
Olivia is our hero; she is so motivated and has been so brave
through all of this! Olivia started First grade August 21, 2006
and is doing wonderful! She loves Sports, Dance, playing with her
sister, and just being a “normal kid”.
We are currently rotating each month for a year to go to Children's
Hospital and the Blessing Cancer Center. God has blessed us in
our journey in so many ways, in ways we never imagined. We have
met so many wonderful and caring people along the way. This experience
has given us strength and friendships that will last forever. We have touched
hearts and have been touched by many, many hearts.
