Mac's Battle With Ewing's Sarcoma
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On Valentine’s Day, our world came to a halt when Mac was diagnosed with a rare childhood cancer called Ewing’s Sarcoma. What had been a nagging pain in his leg turned out to be the last thing any parent wants to hear: that their child has cancer. No one wants to think that this can happen, let alone to a child that we love — our smart, funny, interesting, and creative twelve year-old Mac.
Mac has been under the care of doctors at Doernbecher's Children's Hospital at OHSU in Portland. After the diagnosis, he quickly began chemotherapy and just finished his second round. It is an excruciating schedule: he is inpatient for all his chemo which is every other week, anywhere from 2-5 days. All totaled, he spends about half the month in the hospital. Mac has to endure 7 rounds of chemo and then will undergo an extensive surgery in May to remove the tumor and rebuild his leg. After surgery, Mac will be non weight-bearing for at least three months! He will be in a wheelchair and eventually on crutches if possible. He will require constant care. He only gets a couple weeks reprieve and then begins several more months of chemotherapy after surgery.
All in all, Mac is facing nearly a year of treatment, hopefully getting his last round of chemo before Christmas. Mac’s prognosis is good, and we are all counting on a clean bill of health and a joyous return to normal life once this process is over. However, it is a daunting year ahead. It will be filled with much worry, suffering, and demanding care — and also with strength, wisdom, love, and support. Our family has felt the love pour in from so many, and now we are asking for your support.
It is difficult to ask for help, but the year ahead will have many trials, including financial. Mac’s chemo schedule requires Laura and Kelby to join him in the hospital (there is no place they would rather be) and then at least one of them must be home to help when he’s sick. Kelby continues to work when Mac is not in the hospital, and his fire department has been unbelievably supportive with offers to cover his shifts and be flexible with his needs. As many of you know, Laura has her own private practice and so when she doesn't work she doesn't get paid. Her schedule has already been vastly reduced, seeing clients when she can. They have insurance, but many things are not fully covered.
Here is an idea of some things they have immediate needs for:
* Wheelchair ramp for Mac
* Bathroom remodel to accommodate wheelchair and non-weight bearing status
* Laptop for Mac to video conference with his class to keep up with his schoolwork
* Knee scooter, wrist crutches and other devices not covered by insurance
* Supplementing Laura's loss of income for a year
This all comes at a great cost, and that is why we are asking for your support. Mac is doing the hardest work of all, and the greatest gift is enabling Laura and Kelby to have the ability to care for him during this unimaginably difficult year. By easing some of the financial stress, you would be directly helping Laura and Kelby devote all their resources to caring for Mac and helping insure that he has the best support possible for the fight ahead.
Here are some words about Mac from a dear family friend: Mac is an incredible friend to so many. He has grown up as a Candalaria Husky and is now an exemplary student at Howard Street Charter Middle School in Salem. Mac delights in the ordinary, and extraordinary experiences that life has to offer. He is zealous about being a keeper of tradition, finding meaning and belonging in annual trips to the Polar Express with family and friends and annual Easter hunts in the back yard with neighbors. He can transform a trampoline or a dining room table into a fortress of fun and innovation. He is an encyclopedia about all things Lego, Marvel, Magic and Star Wars. He loves to create movies and animations of his own that express his interests, talents and showcase his great sense of humor. Mac has an abiding love for dogs, especially his 3 labs, Brick, Lego and Leia. It is not uncommon to find him piled up in a snuggly blanket with one or more of his canine companions. Mac finds points of connection with anyone who lends him an ear. Whether you are an adult or one of Mac's peers, you can't help but admire the way he creates an environment of inclusion wherever he goes. Mac can move from serious to silly seamlessly and has the ability to ignite contagious laughter. He is kind, brilliant, innovative, all without losing his empathic spirit. Mac knows what it is to truly walk alongside others, and often is a place of refuge for those who feel outcast. Now it is our turn to walk with Mac. For such a rare and unique individual to have such a rare form of cancer, we are afforded a rare and unique opportunity to journey alongside Mac and impart our strength to carry him through the next year of treatment.
Mac has been under the care of doctors at Doernbecher's Children's Hospital at OHSU in Portland. After the diagnosis, he quickly began chemotherapy and just finished his second round. It is an excruciating schedule: he is inpatient for all his chemo which is every other week, anywhere from 2-5 days. All totaled, he spends about half the month in the hospital. Mac has to endure 7 rounds of chemo and then will undergo an extensive surgery in May to remove the tumor and rebuild his leg. After surgery, Mac will be non weight-bearing for at least three months! He will be in a wheelchair and eventually on crutches if possible. He will require constant care. He only gets a couple weeks reprieve and then begins several more months of chemotherapy after surgery.
All in all, Mac is facing nearly a year of treatment, hopefully getting his last round of chemo before Christmas. Mac’s prognosis is good, and we are all counting on a clean bill of health and a joyous return to normal life once this process is over. However, it is a daunting year ahead. It will be filled with much worry, suffering, and demanding care — and also with strength, wisdom, love, and support. Our family has felt the love pour in from so many, and now we are asking for your support.
It is difficult to ask for help, but the year ahead will have many trials, including financial. Mac’s chemo schedule requires Laura and Kelby to join him in the hospital (there is no place they would rather be) and then at least one of them must be home to help when he’s sick. Kelby continues to work when Mac is not in the hospital, and his fire department has been unbelievably supportive with offers to cover his shifts and be flexible with his needs. As many of you know, Laura has her own private practice and so when she doesn't work she doesn't get paid. Her schedule has already been vastly reduced, seeing clients when she can. They have insurance, but many things are not fully covered.
Here is an idea of some things they have immediate needs for:
* Wheelchair ramp for Mac
* Bathroom remodel to accommodate wheelchair and non-weight bearing status
* Laptop for Mac to video conference with his class to keep up with his schoolwork
* Knee scooter, wrist crutches and other devices not covered by insurance
* Supplementing Laura's loss of income for a year
This all comes at a great cost, and that is why we are asking for your support. Mac is doing the hardest work of all, and the greatest gift is enabling Laura and Kelby to have the ability to care for him during this unimaginably difficult year. By easing some of the financial stress, you would be directly helping Laura and Kelby devote all their resources to caring for Mac and helping insure that he has the best support possible for the fight ahead.
Here are some words about Mac from a dear family friend: Mac is an incredible friend to so many. He has grown up as a Candalaria Husky and is now an exemplary student at Howard Street Charter Middle School in Salem. Mac delights in the ordinary, and extraordinary experiences that life has to offer. He is zealous about being a keeper of tradition, finding meaning and belonging in annual trips to the Polar Express with family and friends and annual Easter hunts in the back yard with neighbors. He can transform a trampoline or a dining room table into a fortress of fun and innovation. He is an encyclopedia about all things Lego, Marvel, Magic and Star Wars. He loves to create movies and animations of his own that express his interests, talents and showcase his great sense of humor. Mac has an abiding love for dogs, especially his 3 labs, Brick, Lego and Leia. It is not uncommon to find him piled up in a snuggly blanket with one or more of his canine companions. Mac finds points of connection with anyone who lends him an ear. Whether you are an adult or one of Mac's peers, you can't help but admire the way he creates an environment of inclusion wherever he goes. Mac can move from serious to silly seamlessly and has the ability to ignite contagious laughter. He is kind, brilliant, innovative, all without losing his empathic spirit. Mac knows what it is to truly walk alongside others, and often is a place of refuge for those who feel outcast. Now it is our turn to walk with Mac. For such a rare and unique individual to have such a rare form of cancer, we are afforded a rare and unique opportunity to journey alongside Mac and impart our strength to carry him through the next year of treatment.
Organizer
Lisa Mangum
Organizer
Portland, OR
