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Keep Matthew Strong - Osteosarcoma

$36,405 of $40,000 goal

Raised by 221 people in 13 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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Update 28
Posted by Deb Lehman
6 days ago
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Matthew was discharged yesterday and is doing well!

He was in the OR for a couple hours on Thursday. Everything looked really good! The drain will remain in his arm for a couple of weeks. They also took out the sutures in his leg. This is the area where the skin graft, from his left thigh, was placed in order to close the area where his fibula was removed. He enjoyed his traditional inpatient visit with John St. Peter and Bill Jarecki. They have visited Matthew, barring illness, every time he has been admitted since his chemo journey began in September of 2017. He also had friends visit which he truly appreciates.

A PICC line (long term IV) was placed on Friday and he was told he may not be discharged until Monday. He was thrilled to be discharged on Saturday. Home Health delivered the supplies at 9 pm Saturday and his first home dose of IV antibiotics were given. He will receive those twice a day and an oral antibiotic once a day. Hopefully this will take care of the small amount of Staph that grew on the cultures and anything else that was shielded by the antibiotics he was already taking.

He has follow-up appointments on Jan 14 (previously scheduled) and Jan 23.

Thank you for all the shares of the GoFundMe and continued support of Matthew!

#keepmatthewstrong
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Update 27
Posted by Deb Lehman
11 days ago
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Dr King came out of the OR around 2:00 pm. The infection pocket went down to the donor bone and hardware. They cleaned it out and put a drain in. He is on IV antibiotics and will then be on oral antibiotics for months. The hardware may need to be replaced in the future.

He will return to surgery on Thursday to make sure everything looks good. In the meantime, they'll be hanging out in the hospital for Natalie's birthday for the second year.
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Update 26
Posted by Deb Lehman
11 days ago
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Matthew is headed into surgery at noon today with the orthopedic surgeon and the plastic surgery fellow. His arm has looked progressively worse since last evening.

This is not the way anyone wanted to celebrate Natalie's birthday:(
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Update 25
Posted by Deb Lehman
13 days ago
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Matthew was an inpatient for 8 days and was thrilled when it was time to go home. Being in the hospital over the holidays was not easy for Matthew. It really hit him when Christmas came. He has been very strong throughout his 516 day journey, but that morning he allowed himself to express his disappointment for a short period of time.

He spent time with his Grandma Ceelen and Uncle Andy, along with Natalie, and his parents. He was given a very special bag of gifts from Brittany’s Hope Foundation. Brittany was diagnosed with Metastatic Ewing’s Sarcoma just shy of her 18th birthday. Brittany fought her cancer for almost two years. In memory of Brittany, her family started the foundation to provide comfort, support, and hope for young adults fighting a childhood cancer, often in an environment that tends to concentrate on young children. Thank you so much for your generosity. The Ceelen Family would also like to thank everyone who visited, sent messages, gifts, meals, and treats.

Matthew’s arm was getting progressively red around the incision and very swollen on Dec 30. He was able to be seen on Dec 31 which was two days prior to his scheduled appointment. He was given antibiotics for a suspected infection. His next appointment is on Jan 14. A picture from today shows that the redness and swelling in his arm has decreased. Matthew felt a lot of pressure and then it felt much better after a large amount of drainage found a place to escape this morning.

Matthew had a wound vac on his lower left leg for five days. Once it was removed a splint was made which really has no practical use except to protect the skin graft so it can heal properly. This area looks good according to the plastic surgeon’s office. It’s definitely unlike any wound we’ve seen and the confirmation that it’s on track was comforting.

Matthew’s pain has been controlled well since the New Year. He has been mastering wheelchair transfers and has been able to get in some xbox time. His hand has been working better than it did after the first surgery. They have been setting up a home classroom for school which starts Jan 7. This is very exciting. While Matthew was undergoing chemo he fell behind in his studies. He felt awful a majority of the time he was admitted for chemo and the wifi was not reliable. Few classes were recorded, but it was evident how the lectures really enhanced the material he was provided. On Saturday, he tested out his new set-up with a tutor using FaceTime. He’s hoping tomorrow is just as successful using Google Hangouts.

Thanks for your continued support. The GoFundMe has been shared at least 499 times on Facebook. Please keep sharing his story and help us get above 500 shares. Re-shares by the same individual do not increase the counter but we’d love your continued support. The GoFundMe has buttons to easily share via Facebook, Twitter, or a text message.

#keepmatthewstrong
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$36,405 of $40,000 goal

Raised by 221 people in 13 months
Created December 4, 2017
DL
Deb Lehman
on behalf of DeAnn and John Ceelen
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