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Keep Matthew Strong - Osteosarcoma

$34,660 of $40,000 goal

Raised by 205 people in 7 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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Matthew is a Boy Scout and is close to earning Scouting’s highest rank, Eagle Scout. To accomplish this Matthew only needs to complete his Eagle Project, a service project he must plan, develop, and lead. His plans to complete his project were significantly impacted by his cancer diagnosis last August. Nonetheless, Matthew has continued to work on the project and raise funds to offset its costs. All extra funds will be directed to the Mequon Nature Preserve.

The Mequon-Thiensville Sunrise Rotary Club is a tremendous supporter of the community. They were overwhelmingly in support of Matthew’s project and are funding the entire cost! THANK YOU!

Matthew has chosen to build two bat houses to be placed in the Mequon Nature Preserve. Matthew chose bat houses because he is concerned about the decline of the bat population due to White Nose Syndrome (WNS). A fungus that makes bats become more active than normal during hibernation causes WNS. This results in them burning up fat they need to survive the winter. WNS has killed millions of bats in North America and there is no cure. Bat houses give the surviving bats a safe place to raise their young and rebuild the bat population. I first learned about WNS on a tour of the Crystal Cave with Matthew, his cousin Blake, and my mom in 2011. When we came back, Matthew shared with his family what he learned about WNS. I was surprised with all the details he remembered from our tour.

Thanks again to the Mequon-Thiensville Rotary Club for their support of Matthew and his Eagle Project and for "telling the rest of his story" on their website.
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On Thursday, members of the Ceelen family will gather to say goodbye to another loved one. Matthew's Grandpa Bill passed away April 26, Bill's brother, Tony, passed away May 17, and their sister, Pat, passed away June 11. They were best friends and huge supporters of Matthew and his fight to obliterate osteosarcoma. They understood the cancer fight first hand and each have asked that all or a portion of memorials be donated to Matthew's Fund.

Here are links to their obituaries:

Bill

http://www.fissbillspoklasnyfuneralhome.com/obituaries/William-Ceelen/#!/Obituary

Tony

http://www.konrad-behlman.com/obituaries/Anthony-L-Ceelen?obId=3091588#/obituaryInfo

Pat

http://www.konrad-behlman.com/obituaries/Patricia-A-Kraus?obId=3114171#/obituaryInfo


If memorial donations have been made directly to the family or to the bank, I will be adding those funds to the total in the next couple weeks.

Thank you all for your support!

#keepmatthewstrong
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“Everything looks great!” That’s the text I received from DeAnn in regards to the results of the whole body PET MRI, left arm x-ray, and a chest CT scan. THERE IS NO SIGN OF CANCER!

Matthew had a relatively uneventful last (planned) inpatient admission. The Ceelen Family thanked the team on the HOT unit with a special treat each day. The staff decorated Matthew’s door with signs and messages to celebrate his last chemo. Luna was able to visit Matthew at the hospital on his last day. He was discharged on May 11 and did not need fluids at home. He says Luna is his good luck charm since he hasn’t had to have fluids at home since she joined the family. The following day DeAnn and Matthew drove to Champaign to celebrate Brian’s graduation from the University of IL. We also celebrated Grandpa Lehman’s 83rd birthday and Mother’s Day the following day.

Matthew went for his weekly drug infusion the following Wednesday and attended physical therapy prior to going to school on Thursday. May 21-May 22 was full of tests: hearing (mild hearing loss in higher pitches), left arm x-ray, chest CT, an echocardiogram, lab work, and a whole body PET MRI. Waiting for the results until Thursday had me full of anxiety. I can only imagine what Matthew and the rest of the family were going through. There were definitely tears when I got the text and found out he was cancer free!

The recurrence rate for osteosarcoma is highest during the first 2 years. Matthew will have a chest CT and a left arm x-ray every 3 months for 2 years. Results from these tests will be available in a few hours instead of days. Additional tests will only be performed if something suspicious is seen. After 2 years, the time between visits will increase over a total of 10 years. Matthew will be 25 at that time. It seems so far away, but it will be here before we know it.
Love from the HOT Unit staff
Thank you MACC Fund Center staff!
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245 DAYS!

It has been 245 days since Matthew’s first inpatient admission. He was introduced to the Hematology, Oncology, and Transplant (HOT) Unit after a LONG clinic appointment FULL of information. - way too much information to fully absorb. On that day he received his first two doses of chemotherapy – the red and the clear.

May 8 was Matthew’s last High Dose Methotrexate – the yellow chemo. HIS LAST SCHEDULED ADMISSION. My parents and I arrived to his room at Children’s just prior to the end of the chemo infusion. The first admission was full of unknowns and firsts. I shed tears as I followed Matthew and his IV pole “Pat” on the first tour of the HOT Unit. Today I shed my tears prior to arriving at the hospital. As I was leaving work, I received a text from DeAnn with a picture of Matthew and the last bag of chemo hanging. No delays, it was really happening! The HOT Unit has been their home away from home for 245 days, but the end of scheduled overnight stays is coming to an end in a few short days.

Matthew still has a full-time schedule as an outpatient until mid-Aug. Thirteen appointments have already been scheduled between May 16 and June 20 and more expected now that Matthew has been cleared to start Physical Therapy!!

In just over two weeks we will find out if the treatment has worked. Please pray that his cancer is gone. If our prayers are answered, his last scheduled treatment will be approximately 98 days from today….but who’s counting.

Thank you for the love and support you have shown the Ceelen Family following the death of Matthew’s Grandpa, Bill Ceelen. It is greatly appreciated.

#keepmatthewstrong
The last High Dose Methotrexate
Strong is an understatement.
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$34,660 of $40,000 goal

Raised by 205 people in 7 months
Created December 4, 2017
DL
Deb Lehman
on behalf of DeAnn and John Ceelen
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