It's been a year
Update on Gerard's year and health.
The good news:
Gerard progressed from third grade (all A's) and will be going to fourth grade next fall. This is nothing short of a miracle! He missed ten days of school (instead of 50 like in second grade), and somehow managed to be strong enough to play a role in Ballet West's Nutcracker, affectionately known in the cast as "Spank Boy" for Cast A, which literally brought him back to life in a way I'd never imagined. He loves to dance and perform. Trips to Salt Lake to rehearse did wonders for his self-confidence and as tiny as he was. He matured leaps and bounds by being around professional dancers and other boy ballet dancers. He's become a voracious reader, and though he still enjoys math and science, he's more inclined in the arts at this time. He still enjoys kicking the soccer ball around, and also has recently learned to ride his bike after having to put that on hold for two years. If you zoom in on his legs you'll see the many bruises, which doctors love to see. Big, big milestones have been reached these past 6 months!
Last year, due to financial considerations, we had to place him in public school, and though he did OK with that educationally, things were rough for him on a social scale. Inner-city Ogden can be a bit challenging. The positive thing about the school was the new facility (i.e. newer plumbing), so the bathroom was easy to navigate and we had fewer of those types of issues to deal with as the school and teachers were completely on board with accommodations for his needs. Of course, he made new friends easily and had a core group that supported one another, even one from his previous school. Sadly, one of his friends lost her mother to the flu in April, and he had a sad few weeks of learning how to cope with grief in a new way. He is a sweet, empathetic boy.
The not-go-great news:
As far as treatment goes, Gerard continues (indefinitely) to receive chemo and infusions geared towards his IBD (both Crohn's disease and colitis). The other auto-immune struggles have improved a little bit with those therapies, though he has had some issues with memory recall, focus, and his being susceptible to STREP. We visited 3 doctors once to get a strep diagnosis, which seemed so crazy - he doesn't present like a typical kid. As our luck would have it, PCMC missed the diagnosis. Frustrating. He's also in physical therapy now, which I've been asking for over a year to address his knee/leg/foot pain. It's helping. And as fate would have it, his therapist has Crohn's disease, so she comes from a position of knowing about the reality firsthand.
The good news:
The good news is that he's on the growth charts again! He's in the 50% for weight and 30% height, which we are thrilled with. He's got a much better appetite, and I work with him on learning how to best navigate his nutritional needs, meds and rest. Because there is no cure for what ails him, we do the best we can with all the good stuff: what he puts in his body, what he gets to be around and not, what he's thinking, how he's sleeping, and how he's managing his pain and allergy exposures. We feel like we have a good handle on this and we have good days in the months, now! We are living life a little bit more and getting outside a little bit more when he's up for it again. He tends to overdo everything because he's afraid of missing out, so we have to reign him in sometimes and force him to be quiet. That's a challenge since he's learning how to play the drums. :-)
The bad news:
Our insurance doesn't cover a huge portion of his medical needs and we continue to struggle with the astronomical expense and we do without a lot. He experiences a lot of unpleasant side effects. He often can't sleep because of pain. I still can't work a full time job because of all of the doctor's visits and therapy that takes him up and down the course of the diseas(es) and the SLC valley. But we're not giving up! The Mayo Clinic was a godsend thanks to our friends, family and followers, and we will forever be grateful. If you're so inclined to share our story, here is the link to our Go Fund Me page, which is still active until we reach our goal. The Mayo Clinic visits, although recommended by ALL of our doctors, was declined by our fabulous insurance. I called the insurance commissioner to no avail. Our insurance isn't monitored by the government. It's "self-regulated" whatever that means. And you know what that means. Lucky us! We refuse to file for bankruptcy or for disability because it shouldn't be that way. So we'll be working a long, long time. So what?!? We know others who are in worse situations, and we know we'll be OK. If you'd like artwork, or writing, or any sort of freelance styling, I'd be happy to give you a bid. Or...this is easy, to share. Sad that it's the top way most people raise funds for astronomical medical expenses. We also applied for reduction and assistance of our bills through our main healthcare provider (a nonprofit one). Brought down a 5" thick file of notes and bills last August. All declined. So there's this - Link to Go Fund Me Here
We've paid over $30,000 out of pocket on our own, not counting that nice link and help from friends. And I'm not complaining one bit! G got care and those providers deserve to be paid. But the $5,000 for one medication every 6 weeks? How do you weigh in on that one? Lucky legislators don't have to worry about such insignificant things like healthcare.
Thank you all for your friendship and compassion. There is nothing as isolating as a chronic illness. I was a contributing member of my community and was active in nonprofit groups, including fundraising for many great causes, including higher education. I miss that. And I thank all of you who have reached out and given us comfort in these past two, nearly three years of struggle. It's uncomfortable, I know, to talk to me about this. It's uncomfortable, I know, to invite me and G to things you know we'll decline. It's OK. Invite us anyway. It lets us know you care.
The Crohn's and Colitis Foundation have agreed to let me start up a support group in Ogden. It is slow going, because the main person is on FMLA due to a flare up of her autoimmune diseases, but I imagine it will kick off in the fall once school starts up again. If you have friends who need support, please put them in touch with me. I don't have all the answers, but I sure know a lot. And unlike a lot of doctors out there, I'll listen. In fact, we walked in the "Taking Steps" walk for the CCF here in Utah last Saturday in Salt Lake City at Wheeler Farm
and Gerard made it for 2 miles. Here is is afterwards, sitting in the shade, resting and listening to live music. Like I said...milestones! All thanks to all of you. Now go and have a wonderful summer! We plan to. G will be off to Camp Oasis thanks to a scholarship from CCF where we hope he'll learn how to cope like others do with this frustrating group of illnesses. We're so very proud of him. We hope ya'll are, too.
Much love and peace,
Rebecca (Gerard's Mom)
Gerard progressed from third grade (all A's) and will be going to fourth grade next fall. This is nothing short of a miracle! He missed ten days of school (instead of 50 like in second grade), and somehow managed to be strong enough to play a role in Ballet West's Nutcracker, affectionately known in the cast as "Spank Boy" for Cast A, which literally brought him back to life in a way I'd never imagined. He loves to dance and perform. Trips to Salt Lake to rehearse did wonders for his self-confidence and as tiny as he was. He matured leaps and bounds by being around professional dancers and other boy ballet dancers. He's become a voracious reader, and though he still enjoys math and science, he's more inclined in the arts at this time. He still enjoys kicking the soccer ball around, and also has recently learned to ride his bike after having to put that on hold for two years. If you zoom in on his legs you'll see the many bruises, which doctors love to see. Big, big milestones have been reached these past 6 months!
Last year, due to financial considerations, we had to place him in public school, and though he did OK with that educationally, things were rough for him on a social scale. Inner-city Ogden can be a bit challenging. The positive thing about the school was the new facility (i.e. newer plumbing), so the bathroom was easy to navigate and we had fewer of those types of issues to deal with as the school and teachers were completely on board with accommodations for his needs. Of course, he made new friends easily and had a core group that supported one another, even one from his previous school. Sadly, one of his friends lost her mother to the flu in April, and he had a sad few weeks of learning how to cope with grief in a new way. He is a sweet, empathetic boy.
The not-go-great news:
As far as treatment goes, Gerard continues (indefinitely) to receive chemo and infusions geared towards his IBD (both Crohn's disease and colitis). The other auto-immune struggles have improved a little bit with those therapies, though he has had some issues with memory recall, focus, and his being susceptible to STREP. We visited 3 doctors once to get a strep diagnosis, which seemed so crazy - he doesn't present like a typical kid. As our luck would have it, PCMC missed the diagnosis. Frustrating. He's also in physical therapy now, which I've been asking for over a year to address his knee/leg/foot pain. It's helping. And as fate would have it, his therapist has Crohn's disease, so she comes from a position of knowing about the reality firsthand.
The good news:
The good news is that he's on the growth charts again! He's in the 50% for weight and 30% height, which we are thrilled with. He's got a much better appetite, and I work with him on learning how to best navigate his nutritional needs, meds and rest. Because there is no cure for what ails him, we do the best we can with all the good stuff: what he puts in his body, what he gets to be around and not, what he's thinking, how he's sleeping, and how he's managing his pain and allergy exposures. We feel like we have a good handle on this and we have good days in the months, now! We are living life a little bit more and getting outside a little bit more when he's up for it again. He tends to overdo everything because he's afraid of missing out, so we have to reign him in sometimes and force him to be quiet. That's a challenge since he's learning how to play the drums. :-)
The bad news:
Our insurance doesn't cover a huge portion of his medical needs and we continue to struggle with the astronomical expense and we do without a lot. He experiences a lot of unpleasant side effects. He often can't sleep because of pain. I still can't work a full time job because of all of the doctor's visits and therapy that takes him up and down the course of the diseas(es) and the SLC valley. But we're not giving up! The Mayo Clinic was a godsend thanks to our friends, family and followers, and we will forever be grateful. If you're so inclined to share our story, here is the link to our Go Fund Me page, which is still active until we reach our goal. The Mayo Clinic visits, although recommended by ALL of our doctors, was declined by our fabulous insurance. I called the insurance commissioner to no avail. Our insurance isn't monitored by the government. It's "self-regulated" whatever that means. And you know what that means. Lucky us! We refuse to file for bankruptcy or for disability because it shouldn't be that way. So we'll be working a long, long time. So what?!? We know others who are in worse situations, and we know we'll be OK. If you'd like artwork, or writing, or any sort of freelance styling, I'd be happy to give you a bid. Or...this is easy, to share. Sad that it's the top way most people raise funds for astronomical medical expenses. We also applied for reduction and assistance of our bills through our main healthcare provider (a nonprofit one). Brought down a 5" thick file of notes and bills last August. All declined. So there's this - Link to Go Fund Me Here
We've paid over $30,000 out of pocket on our own, not counting that nice link and help from friends. And I'm not complaining one bit! G got care and those providers deserve to be paid. But the $5,000 for one medication every 6 weeks? How do you weigh in on that one? Lucky legislators don't have to worry about such insignificant things like healthcare.
Thank you all for your friendship and compassion. There is nothing as isolating as a chronic illness. I was a contributing member of my community and was active in nonprofit groups, including fundraising for many great causes, including higher education. I miss that. And I thank all of you who have reached out and given us comfort in these past two, nearly three years of struggle. It's uncomfortable, I know, to talk to me about this. It's uncomfortable, I know, to invite me and G to things you know we'll decline. It's OK. Invite us anyway. It lets us know you care.
The Crohn's and Colitis Foundation have agreed to let me start up a support group in Ogden. It is slow going, because the main person is on FMLA due to a flare up of her autoimmune diseases, but I imagine it will kick off in the fall once school starts up again. If you have friends who need support, please put them in touch with me. I don't have all the answers, but I sure know a lot. And unlike a lot of doctors out there, I'll listen. In fact, we walked in the "Taking Steps" walk for the CCF here in Utah last Saturday in Salt Lake City at Wheeler Farm
and Gerard made it for 2 miles. Here is is afterwards, sitting in the shade, resting and listening to live music. Like I said...milestones! All thanks to all of you. Now go and have a wonderful summer! We plan to. G will be off to Camp Oasis thanks to a scholarship from CCF where we hope he'll learn how to cope like others do with this frustrating group of illnesses. We're so very proud of him. We hope ya'll are, too.Much love and peace,
Rebecca (Gerard's Mom)
Sad stories are difficult to hear, but thanks for sharing. Acknowledging that others have it worse is truly impressive because I know that doesn't ease your burdens. Yet, it does describe courage rather than pity. I wish there was a clever cliché that could make all your troubles go away. For now, please know that I read with interest and I continue to pray for Gerard's healing. I extend to you a virtual bear hug and wish for you a miracle from the heavens.
ReplyDeleteHow very kind of you Pablo. Thank you for your words of love.
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