A Game of Crohn's: Noah's Journey
Donation protected
Game of Crohn’s: The Siege of Noah’s Keep
Hello, friends,
Allow me to introduce my son Noah, if you haven’t already met him. He is a bright, funny (well, punny, really!), engaging young man who, despite the illness that has laid him low these past few years, has an incredible attitude that keeps those around him laughing and buoyed by his hopeful perspective of life in general. To know Noah is to love him and his contagious laugh.
In the spring of 2019, after a long and arduous path, Noah was diagnosed with a severe case of Crohn’s disease that is complicated by flares of polyarthritis. Crohn's disease is a chronic inflammatory bowel disease that has no cure. In Noah's case, the disease presents with mouth, esophagus, and small intestine ulcerations that makes it very difficult--sometimes impossible--for him to eat and absorb nutrients.
https://www.mayoclinic.org/diseases-conditions/crohns-disease/symptoms-causes/syc-20353304
After Noah's initial diagnosis, followed by some improvement from the subsequent treatments and therapy, we rested a little easier as his symptoms decreased. However, a few months ago, Noah’s symptoms returned abruptly; his condition went from bad to worse, resulting in him losing 50 pounds in fewer than six months.
Since May of this year, we have been on a rough road of doctors, treatments, multiple ER visits, a hospital stay, feeding tubes, blood clots, a different kind of feeding tube, and piles upon piles of blood draws and tests. Complications from the Crohn’s and Noah’s treatments seem to await us at every turn. At this point, even with me being here in Utah for the past twelve weeks and being Noah’s primary caregiver, we are struggling to make progress. His weight gain has plateaued, the arthritis returns at odd times (which keeps him pretty firmly in bed), and he has virtually no appetite. This disease is simply ravaging his body, despite us fighting for improvements.
During the past three months, it has become increasingly apparent that I will need to move Noah back to our home in Massachusetts. His living situation here in Utah has become increasingly unstable, and we seem to be hitting a cul-de-sac in his medical care. I know that we can provide far better care for Noah long-term—and it’ll be a while—from our home base.
I've told you that to tell you this: We have exhausted our resources with my being in Utah to care for Noah. As my available working hours have decreased (added to my decreased workload due to covid), the cost of keeping up Noah’s care with medical expenses, prescriptions, groceries, basic living expenses, many (many) trips to doctors and hospitals--while trying to stay current with other responsibilities—have driven home that this pace and situation is unsustainable for Noah, for me, and for my partner Andy.
All this has brought me to this point, doing something that, historically, I am reluctant to do: I am asking you for help. My family can not continue to tackle this on our own. We need to move Noah and his belongings across the country to Massachusetts and get him settled there by establishing a new team of doctors and a safe space for his healing. And, because of Noah’s vulnerability to infections, we cannot take the risk to fly and will need to rent a moving van. The drive across country will most likely take extra time due to his lack of stamina and overall health condition.
I recognize that things are rough for so many people these days, and my asking for financial help comes amid difficult times. If, however, you are able to help, anything and everything is support that I value greatly. I am sure that with the help of our friends and family, the siege of Noah's body and soul will come, in time, to an end.
I have been truly inspired and buoyed by the kindness and generosity that our communities have shown these past few months, and I fully appreciate your support and positivity. Thank you.
Please feel free to share this far and wide.
With gratitude,
Mae
(and Noah:))
Hello, friends,
Allow me to introduce my son Noah, if you haven’t already met him. He is a bright, funny (well, punny, really!), engaging young man who, despite the illness that has laid him low these past few years, has an incredible attitude that keeps those around him laughing and buoyed by his hopeful perspective of life in general. To know Noah is to love him and his contagious laugh.
In the spring of 2019, after a long and arduous path, Noah was diagnosed with a severe case of Crohn’s disease that is complicated by flares of polyarthritis. Crohn's disease is a chronic inflammatory bowel disease that has no cure. In Noah's case, the disease presents with mouth, esophagus, and small intestine ulcerations that makes it very difficult--sometimes impossible--for him to eat and absorb nutrients.
https://www.mayoclinic.org/diseases-conditions/crohns-disease/symptoms-causes/syc-20353304
After Noah's initial diagnosis, followed by some improvement from the subsequent treatments and therapy, we rested a little easier as his symptoms decreased. However, a few months ago, Noah’s symptoms returned abruptly; his condition went from bad to worse, resulting in him losing 50 pounds in fewer than six months.
Since May of this year, we have been on a rough road of doctors, treatments, multiple ER visits, a hospital stay, feeding tubes, blood clots, a different kind of feeding tube, and piles upon piles of blood draws and tests. Complications from the Crohn’s and Noah’s treatments seem to await us at every turn. At this point, even with me being here in Utah for the past twelve weeks and being Noah’s primary caregiver, we are struggling to make progress. His weight gain has plateaued, the arthritis returns at odd times (which keeps him pretty firmly in bed), and he has virtually no appetite. This disease is simply ravaging his body, despite us fighting for improvements.
During the past three months, it has become increasingly apparent that I will need to move Noah back to our home in Massachusetts. His living situation here in Utah has become increasingly unstable, and we seem to be hitting a cul-de-sac in his medical care. I know that we can provide far better care for Noah long-term—and it’ll be a while—from our home base.
I've told you that to tell you this: We have exhausted our resources with my being in Utah to care for Noah. As my available working hours have decreased (added to my decreased workload due to covid), the cost of keeping up Noah’s care with medical expenses, prescriptions, groceries, basic living expenses, many (many) trips to doctors and hospitals--while trying to stay current with other responsibilities—have driven home that this pace and situation is unsustainable for Noah, for me, and for my partner Andy.
All this has brought me to this point, doing something that, historically, I am reluctant to do: I am asking you for help. My family can not continue to tackle this on our own. We need to move Noah and his belongings across the country to Massachusetts and get him settled there by establishing a new team of doctors and a safe space for his healing. And, because of Noah’s vulnerability to infections, we cannot take the risk to fly and will need to rent a moving van. The drive across country will most likely take extra time due to his lack of stamina and overall health condition.
I recognize that things are rough for so many people these days, and my asking for financial help comes amid difficult times. If, however, you are able to help, anything and everything is support that I value greatly. I am sure that with the help of our friends and family, the siege of Noah's body and soul will come, in time, to an end.
I have been truly inspired and buoyed by the kindness and generosity that our communities have shown these past few months, and I fully appreciate your support and positivity. Thank you.
Please feel free to share this far and wide.
With gratitude,
Mae
(and Noah:))
Organizer
Mae Tanner
Organizer
Charlemont, MA