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Keep Matthew Strong - Osteosarcoma

$36,763 of $40,000 goal

Raised by 228 people in 20 months
Created December 4, 2017
DL
Deb Lehman
on behalf of DeAnn and John Ceelen
I’m Deb Lehman and I’m proud to call Matthew Ceelen my nephew.  Matthew was diagnosed with bone cancer just weeks shy of his 15th birthday.  In medical terms it is a high grade sclerosing subtype of osteosarcoma.  Approximately 450 children in North America are diagnosed with osteosarcoma each year.  He is 1 of approximately 4 children who will be diagnosed with his subtype of osteosarcoma in 2017.  This page has been set-up to support his fight to obliterate osteosarcoma and we, but especially Matthew, need your help.  

The new goal of $40,000 is only 1/6 of the out-of-pocket expenses that will not be covered by insurance for his aggressive treatment.

The Backstory

In August of 2017, Matthew was looking forward to attending his freshman year at his new high school and was eager to try new sports.  He had been a nationally competitive gymnast since age 8 and made the difficult decision to leave the sport and his teammates.  No one could imagine how monumental this decision would be. 


Football was the first new experience Matthew chose.  Practice started on August 1 and he was doing great.  On August 8, his football career ended as quickly as it started.  Matthew participated in an intra-squad scrimmage that evening.  I received a text from my sister, DeAnn, at 9:43 p.m.  It was a picture of an x-ray captioned “He didn’t even make it to the first game.” 




She is a Physician Assistant and quickly followed the initial text up by telling me she was concerned about the looks of the bone above the break.  I responded, “What are you thinking? Osteo….”  I foolishly thought if I didn’t spell it all the way out he could never have cancer.  By 10:30 p.m. it was determined to be a pathological fracture.  This meant the break was caused by a disease that weakened the bone.  He underwent an MRI that night.  I slept with my glasses on and my phone nearby so I could read updates throughout the night.  By 3:30 a.m., the MRI was done and there were no specific results.  Needless to say this was the beginning of many sleepless nights.

The family met with an Orthopedic Oncologist on Aug 9.  This is when Matthew was told they suspected he had bone cancer.  He was devastated.  A biopsy was performed at 4 p.m.  The waiting game began.  The initial evaluation of his bone biopsy was conducted at Froedtert/Children’s Hospital of Wisconsin in Milwaukee.  It revealed findings consistent with osteosarcoma.  Due to the rare nature of primary bone cancer and the unique findings on Matthew’s bone biopsy, confirmatory opinions were obtained from the leading national pathology experts on osteosarcoma in New York, on August 18, and at the Mayo Clinic in Minnesota thereafter.

While waiting for a definitive diagnosis, they knew it was important to continue testing.  If it was in fact cancer, treatment needed to be started sooner rather than later for the best prognosis.

Seventeen days after Matthew broke his arm he was officially diagnosed with osteosarcoma. 

Prognosis and Treatment

The reality is that his cancer is ultra-rare, has a high recurrence rate 5-10 years down the road and has one of the lowest survival rates of pediatric cancers.   Thus, Matthew’s journey to a cure requires a long and aggressive treatment plan.  Everything is being done to give Matthew the best possible outcome.  I’ve done my best not to look at the statistics and I will not post percentages I’ve read or heard regarding his prognosis here.  He wants to hear some things but not everything.  Matthew only allows himself to believe his cure rate is 100%.  In order to make that happen, his treatment plan includes chemotherapy and surgery.  The chemotherapy he receives each cycle is doxorubicin, cisplatin and methotrexate.   A cycle lasts 5 weeks.

On September 5, I joined Matthew and my sister at his clinic appointment prior to being admitted to the hospital.  The first day of chemotherapy had arrived.  Despite a sleepless night, Matthew still managed to flash a smile.


I was overwhelmed by the information being relayed during this appointment…when you can wear your contacts, what drugs you can take and the appropriate time to take them, the different types of chemotherapy – the red, clear, and yellow stuff, how quickly you have to get to the ER if you have a fever since it can now be life threatening…it went on and on.  Overwhelming!  I wrongly assumed that you have an appointment and chemotherapy would start/finish shortly after.  I had no idea it would take until the middle of the afternoon to start administering the first chemotherapy and that I’d have to leave prior to the start of the second chemotherapy which didn’t start until after 10:00 p.m.     
His first chemotherapy…that’s not the kind of “milestone” I ever wanted to be part of, but I will do whatever I can to support him through this.  I’ve hidden my tears on multiple occasions…the sight of him taking a tour of the inpatient unit for the first time while pushing his IV pole, seeing him at his clinic appointment prior to his second admission, and the hair loss that had occurred in a few short weeks. 


He definitely has his good and bad days and I take comfort in the fact that he is so spiritually strong and is tackling the cancer head on.  He is learning to expect the unexpected and is getting used to his new normal.  His recent schedule after methotrexate was to take leucovorin at 9 a.m./p.m. and 3 a.m./p.m., and take sodium bicarbonate at midnight/12 p.m. and 6 a.m./p.m.  Every 3 hours around the clock.  If Matthew is on fluids at home, the fluid bags and the pump battery need to be changed too.  So even when he is not in the hospital, he is not given a break from the demanding medication schedule and dealing with the side effects of it all.  He attends school whenever he can since it’s the only thing he has control over but this is difficult when his “free time” is so regimented.  Despite everything he is going through, his goal of being a sophomore next year remains.

On November 16, after completing two long 5 week cycles of chemotherapy, Matthew had a major 7 hour surgery to remove his cancerous left humerus (upper arm bone) and insert a donor bone.  The initial pathology results look very promising!  The bone they removed had clear margins and the chemotherapy appears to be working.  The cancer cells are dying – over 90% of them!  The PET scans have not shown further spread of the cancer which is great news.  Unfortunately, there is always the possibility that cancer cells remain that cannot be seen on these tests, particularly in light of the fact he had a bone fracture which could have allowed the cancer cells to move throughout his body.  Because of this, chemotherapy will continue.  Matthew started his third cycle of chemotherapy on Nov 30.  The chemotherapy treatments will continue well into 2018 and once cancer free, he will have regular follow-up appointments and periodic testing for a minimum of 10 years.


How You Can Help

Matthew and his family have received so much support in the past four months.  We cannot Thank You enough!  It has been challenging for the entire family, making this support truly invaluable.  DeAnn is no longer working in order to spend all day and night with Matthew in the hospital, as well as care for him at home.  Unfortunately, they are also dealing with the reality that insurance will only pay a portion of the entire expense related to Matthew’s care.  Therefore, I am reaching out, in hopes of securing monetary contributions that will help the family with a portion of the large uncovered balance.  All funds raised here will go solely to the care of Matthew and his fight to obliterate osteosarcoma.  Any extra donations will be donated to the MACC Fund. 

Additional information about Matthew’s journey can be found at https://www.caringbridge.org/public/matthewceelen

Thank you in advance for your continued support, donations, and helping us get the word out by sharing this page. 

Aunt Debbie
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I walked into the MACC Fund Center and HOT Unit at Children’s Hospital of Wisconsin for the first time on September 5, 2017. I quickly became aware that it was Childhood Cancer Awareness month. There were signs taped to the walls, yellow ribbon balloons, and window paint decorated the large windows throughout the unit as well as the windows in the doors of the patient rooms. Gold is the color of Childhood Cancer and it was quickly learned that yellow is the color of sarcoma/bone cancer. July is Sarcoma Awareness Month and today, the first Sunday in June is designated National Cancer Survivors Day. Two years ago I was not consciously aware of these particular symbols and awareness months/days. These days, I’m aware of many of these and today I paused as I was reminded of National Cancer Survivors Day (NCSD) by a story posted on Instagram by Megan, an above the knee amputee also fighting osteosarcoma. She has been open and honest with her feelings throughout her journey and also has a sense of humor as evidenced by her license plate - 1LEGMEG.

NCSD is even sweeter this year given the fantastic results Matthew has received over the last month. Matthew had a busy April and May, supporting the Bucks in their run to the finals, Physical Therapy, AP and Final Exams, and countless medical appointments.

May 8 - Appointment with Dr Frank (Infectious Disease Specialist). The left arm infection is under control by taking oral antibiotics and the incisions look good.

May 20 - Audiology (Hearing) Test/Labs - This was the third hearing test he’s had since completing chemotherapy. His first test revealed high frequency hearing loss due to Cisplatin, one of his chemotherapy medications, Since there wasn’t any noticeable hearing loss, no treatment was initiated. The second test, 6 months later showed no change. The test on May 20, was more detailed and tested sounds at even higher frequencies than had previously been tested. It showed that the higher the frequency of sound, the worse his hearing loss is. Overall, the test revealed his hearing is stable, with no worsening of his known high frequency hearing loss, and it’s recommended he return in 6 months.

May 21 - Physical Therapy - Matthew completed five intervals on the treadmill including a 6.4 mph run for one minute, followed by a 1 minute cool down. The session left him exhausted. He has been progressing well during his weekly PT sessions and will continue to work on his endurance. His PT sessions will be every other week now that the weather is better and will allow him to do more activity outside.

May 23 - Last day of Sophomore year!

May 24 - A very busy day of medical tests prior to his 3 month follow-up appointment with the Oncology group. This marked one year since completion of his aggressive inpatient chemotherapy. He had a left arm X-Ray, CAT Scan of his chest, and Bone Density Scan. He met with Dr Browning in Oncology and she reviewed the pertinent findings and test results.

Vital Signs - Matthew has regained the 15 pounds he lost during the months of Dec 2018 - Feb 2019 following the extensive left arm surgery (Dec 19, 2018), subsequent left arm infection requiring 2 debridement surgeries, and antibiotic side effects (Feb 2019) that resulted in his liver tests 5x normal and his White Blood Cells extremely low.

He also grew half an inch! His growth was prevented while he was actively receiving chemotherapy. This is very exciting!

CAT Scan of Chest - Most likely site of osteosarcoma cancer recurrence = NO EVIDENCE OF CANCER!!!!!

Bone Density Scan - Chemotherapy did not affect his bone density and is within normal limits

Labs (from May 20) -

The inflammatory markers (Sed Rate and C-Reactive Protein) are normal which reassures the antibiotic is keeping the left arm infection at bay.

The Complete Blood Count (CBC) - Revealed evidence of Iron Deficiency Anemia. This is likely a consequence of his Dec 19 surgery and contributing factor for the fatigue he has experienced. They recommended he watch his diet and take a multivitamin with iron.

The Complete Metabolic Panel (CMP) - Revealed his kidney function test was at the higher level of normal prompting the recommendation that he drink more fluids. The rest of the CMP was within normal limits. Most notably, his markedly abnormal liver test had returned to normal.

Left Arm X-Ray - Dr King, Orthopedic Surgeon, joined the visit to discuss the results. The X-ray showed evidence of significant healing of the fibula/donor bone and his native distal humerus (at the elbow). There was also evidence of healing of the fibula/donor bone between the elbow and shoulder. He also felt this evidence of healing was ahead of schedule.

There was no appreciable healing between the fibula/donor bone and the proximal humerus (at the shoulder). This was disappointing to hear, however the screws were intact and revealed no evidence of loosening which was a good sign that there may be some healing that is not yet visible on X-ray. A CAT Scan of the left arm will be performed in a month to determine if there is any evidence of healing using that method and will mark 6 months since his surgery. If healing is observed at the shoulder on the CAT Scan, he will be allowed to move his left arm at the shoulder.

The Ceelen’s feel blessed with the wonderful visit and almost perfect results!

Matthew went on a mile run shortly after his results. He was disappointed it took him 30 minutes, resulted in some soreness in the front of his left leg, and he was really tired thereafter. Running came relatively easy last year after inpatient chemotherapy ended and he had to be reminded of everything he has been through, especially since December. He had to admit he has come a long way and it will take him a bit longer to get back where he wants to be.

Continue to pray for healing of his left arm! He cannot wait to be a normal teenager again!
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Matthew’s appointment with oncology was delayed to Feb 22, but the wait was worth it. The CT scan was normal and he is officially nine months cancer free! In the weeks since that appointment, his labs have improved. HIs liver tests went back to normal on Feb 18 after discontinuing Rifampin. His white cell count and neutrophils, which fight infection, have normalized after being really low. The numbers were similar to his counts when he was on chemotherapy. The low counts can be a side effect of Vancomycin, but given Matthew’s history it could have also been a side effect of the high dose Methotrexate chemotherapy. Methotrexate can cause bone marrow issues long term. If the numbers would not have improved, Matthew would have had to have a bone marrow biopsy which he was upset to hear. Luckily, that is not necessary at this time. The “late effects” of his cancer treatments may not show up for years and add a layer to his healthcare that must be taken into consideration throughout his lifetime.

As Matthew was graduating from his use of the wheelchair his dad, John, suffered a tibial plateau fracture, at the end of January. After trying to walk for 2.5 weeks John had an MRI and realized things were worse than expected and crutches are in his future for months. The fracture occurred in Miami following a half marathon and weekend at the Make It Better (MIB) conference. The conference is devoted totally to osteosarcoma. It brings together researchers, medical oncology, surgeons, patients, and families. They work together to provide money for research for better treatments and outcomes for those with osteosarcoma, as well as assist families and patients with osteosarcoma.

Matthew saw his classmates in person for the first time in months on Feb 17 when he attended a Father Son Dinner sponsored by the Fathers Club at Marquette High. The evening was great with thought provoking and motivating speakers. On Feb 19, Matthew felt strong enough to see his friend, Luc, and the MUHS hockey team win a playoff game in double overtime. A week later he returned to the classroom. The school weeks have been shortened due to scheduled days off and this week will be his first full week. It has been tiring, but the hope is his stamina will improve as his blood counts improve. He has a lot of catching up to do, but he has been using his lunch and after school time for meetings and to make up quizzes/tests. He hopes to be caught up in a couple weeks.


Matthew and Natalie (named to the Fall Dean’s List at UW-Madison) enjoyed the Travis Scott concert at Fiserv Forum Feb 22 and returned the next day with their parents to watch the Bucks take on the Minnesota Timberwolves. It was Matthew’s first Bucks game since his surgeries. A member of the Bucks organization, Kareeda Chones-Aguam, was aware of this and arranged for Matthew to meet with Giannis after the game. Kareeda was a special guest at Matthew’s Bell Ringing ceremony last August. The Ceelen’s would like to thank Kareeda and the entire Bucks organization for all of their support since Fall 2017. Unbeknownst to me, as Matthew was meeting with Giannis, my brother Dave and I were watching a recording of the documentary “Finding Giannis”. Find it online if you haven’t seen it. Giannis is truly in a league of his own and not just where basketball is concerned. The Ceelen’s will be cheering for Giannis and the Bucks as they head into the playoffs. #FearTheDeer

#keepmatthewstrong
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Matthew has been improving since the Rifampin was stopped. HIs liver blood test results drawn Thursday showed improvement and his fever has decreased each day and is now normal. His appetite is returning, but he is still exhausted. The incision is looking okay.

Matthew has been extremely busy with his studies over the last month. The snow/weather days were spent catching up on those days missed while he was hospitalized for the infection. He will be missing many classes this week because of appointments, but he hopes they will be recorded so he can watch them later.

He has Physical Therapy (PT) on Tuesday. His first PT appointment after the Dec 19 surgery was on Jan 22. He started walking shortly before the appointment after being wheelchair bound for a month. His first steps were uneasy with his legs crossing one in front of the other. This was particularly nerve-racking to watch since a fall could be disastrous. The stairs were off-limits for awhile although he may have tried them out when no one was looking;) The first PT appointment was tiring and a nap was needed on the drive home. The PT focus has been on his leg. He was told on Friday that his shoulder is a lot more stable this time around, but it will take a long time to heal. His arm has been in the sling almost 100% of the time until recently. He is able to have it out of the sling so he can start working on moving his elbow - mostly by using gravity to help it start to straighten out - no active PT exercises. The elbow was stuck at 90 degrees and has improved slightly since. He has been hesitant to move any part of his arm. He wants so much for it to heal correctly and there’s a fear that it will not.

Matthew will be seeing Dr King (Orthopedic surgeon) and Dr Frank (Infectious Disease) on Wednesday. Friday Matthew has his quarterly appointment to follow-up on the Osteosarcoma. He will have a chest CT and spend time in the Oncology Clinic. The plan is for him to receive the results of the CT that day. Please pray there is no evidence of the cancer and send calming thoughts to the Ceelen Family as they anxiously await the results.

#keepmatthewstrong
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The rollercoaster continues. Since being discharged on Jan 12, Matthew has been on IV Vancomycin twice a day, Rifampin (another antibiotic that helps to reach the biofilm surrounding the hardware in his arm), probiotics, and occasional pain meds.  While his left leg has been healing nicely, the incisional wound on his arm has been fluctuating in appearance since he was discharged. It became progressively redder leading up to his appointment with the plastic surgeon on Jan 28. The remaining stitches were removed at that time. It is possible that some of the redness was due to the stitches tearing the skin.

On Thursday, Matthew had a mild headache, but no fever and Tylenol seemed to take care of it.  On Friday, he developed a fever of up to 102.4.  He was exhausted and had no appetite.  He was given Tylenol throughout the weekend after calling his doctors and being referred to the Visiting Nurse who comes once a week to draw labs and change his PICC line dressing. The Infectious Disease doctor ordered labs on Monday. The Visiting Nurse came  that night, but couldn’t get the PICC line to work to get blood and had no needle to draw the old-fashioned way. As a result, an appointment was made Tuesday morning with Infectious Disease. Labs were drawn, and then 3 hours were spent getting his PICC line cleared with TPA (a clot buster).  

The results came in Tuesday evening. Matthew’s liver blood tests are almost 5 times normal. He is stopping the Rifampin and DeAnn has decided to stop the Tylenol as well.  Rifampin may be the cause of his fever, exhaustion, and no appetite too.  The Vancomycin level was low, but the test is time sensitive and it was drawn late so it will be rechecked Thursday when he gets the liver blood tests rechecked.  If it’s not getting better by Thursday, they will look for another cause.  The incision is still red, but DeAnn is going to watch it for now and Dr. King (orthopedic surgeon) said he would see Matthew Friday, or sooner if necessary.

They will continue to take things one day at a time. Please pray that things get better.  
#keepmatthewstrong
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$36,763 of $40,000 goal

Raised by 228 people in 20 months
Created December 4, 2017
DL
Deb Lehman
on behalf of DeAnn and John Ceelen
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