Dylan (11.17.2015) I'll spare the long winded "this has been the longest" since we've updated, although it really has...crazy to think it's been 6 month's since last update. Its really not for a lack of updates but really wanted to do a mass update once we had more info on a few things.
Over this past summer Dylan turned 10 years old! Which to me is crazy to think he is now double digits...time sure seems to pass us by fast.
Also this summer, Dylan got to go to a very special camp. Its a camp that is put on by Stanford Children's Hospital. Its deemed "Transplant Camp" and its for all the kids like Dylan whom have had solid organ transplants and need extra attention in regards to their camp experience, albeit food allergies, meds, and/or other special needs. Its held at St. Dorothy's Rest in Camp Meeker California, which is part of the Episcopal Diocese of California. It was the first time Dylan was ever away from us, he never even made it for a sleepover all night at a friends house 2 doors away, and as you can imagine he was pretty upset and didn't want to be away from us for 6 days. In the end it was an amazing experience for him, even though it took him a few months to fully realize it..ha ha.
The nice thing about him going away this past summer was once he got back to school this year, which now he's a 5th grader and in his final year of elementary school (and when did that happen! Ugh, its goes so quickly), he had less drama going to his 5th grade camp outing...even though it was only for 3 days and 2 nights. Seemed like a piece of cake but it was made a bit more complex because the organization couldn't/wouldn't be responsible for Dylan's allergies and/or meds. So we had 2 options: 1- he would be discluded from camp with his friends or 2- we would have to provide him with all his meals pre-prepared. So of course we did what any parent would do, we made a ton of food so he could feel "normal" like the rest of his friends. So he was on his way with an igloo cooler packed with food and got to have the experience of being out at the Marin Headlands alongside his friends.
Throughout the last 6 months, there has been ups and downs, Dr. visits, an MRI, Pneumonia, tested EBV positive, etc. Its kind of a never ending cycle as we've mentioned over and over throughout the years.
But one of the more breaking news on our end is...over the past week we've been informed that Dylan has received FDA approval for IVIG IL-5 treatments. To rehash this a bit, here is what I mentioned previously in my last post:
"The treatment is called Intravenous Immunoglobulin (IVIG, more specifically targeting IL-5) infusions. In short, they will be injecting IG plasma that would be specific to killing off Dylan’s Eos’s, where as in other forms of this treatment it’s used for supplementation/replacement therapy. The thought is, every 3-4 weeks Dylan would have to go to the hospital and have these treatments (they take 2-4 hrs). The desired outcome is to be methodical in lowering (killing off) the current Eos’s in his blood to that of a normal person (6% and under)…in doing so, hopefully it will settle his system down and he can go about his life a bit less susceptible to normal elements, every cold turning into Pneumonia, or causing a bump in his labs…which in turn causes inflammation in his liver."
We don't have a set time table or date to start any of this yet, as of right now they're trying to figure out protocol for Dylan (remember this isn't a drug used over here or even for this condition he has, so therefore he is more or less the baseline when it comes to this). It's a bit to take in, we worry about what if it doesn't work, or worse...what if it has a negative affect. But mostly, we have lots of hope.
When I came about doing my son's website and furthermore the journal entries that I personally do I never really thought about how it may impact others. I often times refrain from doing more journal entries b/c I'm not looking for sympathy from anyone, I'm not asking for a handout, and mostly I'm not trying to place our burden (our pain, our hardships, our scenario) on anyone...All to often folks read "into" what some write/say and I never wish to portray ourselves that way. I simply put...am putting my thoughts on his journal b/c its a good way for me to clear my head, to keep from going insane, and/or worse. I do all too often not take that step these days b/c I just don't want to have folks look at Dylan poorly based on my views or how I see the world (most often).
We do the best we can with what we got...we aren't perfect and nothing about this life has gone perfectly but its our life and I hope by sharing it, others see it could be worse....you could be in my shoes (and on the flip side, I know our scenario could always be much worse as well...its a two way street and this life has shown me that). I'm fortunate for what we got but that doesn't make it any easier...its still tough.
-Noah
Over this past summer Dylan turned 10 years old! Which to me is crazy to think he is now double digits...time sure seems to pass us by fast.
Also this summer, Dylan got to go to a very special camp. Its a camp that is put on by Stanford Children's Hospital. Its deemed "Transplant Camp" and its for all the kids like Dylan whom have had solid organ transplants and need extra attention in regards to their camp experience, albeit food allergies, meds, and/or other special needs. Its held at St. Dorothy's Rest in Camp Meeker California, which is part of the Episcopal Diocese of California. It was the first time Dylan was ever away from us, he never even made it for a sleepover all night at a friends house 2 doors away, and as you can imagine he was pretty upset and didn't want to be away from us for 6 days. In the end it was an amazing experience for him, even though it took him a few months to fully realize it..ha ha.
The nice thing about him going away this past summer was once he got back to school this year, which now he's a 5th grader and in his final year of elementary school (and when did that happen! Ugh, its goes so quickly), he had less drama going to his 5th grade camp outing...even though it was only for 3 days and 2 nights. Seemed like a piece of cake but it was made a bit more complex because the organization couldn't/wouldn't be responsible for Dylan's allergies and/or meds. So we had 2 options: 1- he would be discluded from camp with his friends or 2- we would have to provide him with all his meals pre-prepared. So of course we did what any parent would do, we made a ton of food so he could feel "normal" like the rest of his friends. So he was on his way with an igloo cooler packed with food and got to have the experience of being out at the Marin Headlands alongside his friends.
Throughout the last 6 months, there has been ups and downs, Dr. visits, an MRI, Pneumonia, tested EBV positive, etc. Its kind of a never ending cycle as we've mentioned over and over throughout the years.
But one of the more breaking news on our end is...over the past week we've been informed that Dylan has received FDA approval for IVIG IL-5 treatments. To rehash this a bit, here is what I mentioned previously in my last post:
"The treatment is called Intravenous Immunoglobulin (IVIG, more specifically targeting IL-5) infusions. In short, they will be injecting IG plasma that would be specific to killing off Dylan’s Eos’s, where as in other forms of this treatment it’s used for supplementation/replacement therapy. The thought is, every 3-4 weeks Dylan would have to go to the hospital and have these treatments (they take 2-4 hrs). The desired outcome is to be methodical in lowering (killing off) the current Eos’s in his blood to that of a normal person (6% and under)…in doing so, hopefully it will settle his system down and he can go about his life a bit less susceptible to normal elements, every cold turning into Pneumonia, or causing a bump in his labs…which in turn causes inflammation in his liver."
We don't have a set time table or date to start any of this yet, as of right now they're trying to figure out protocol for Dylan (remember this isn't a drug used over here or even for this condition he has, so therefore he is more or less the baseline when it comes to this). It's a bit to take in, we worry about what if it doesn't work, or worse...what if it has a negative affect. But mostly, we have lots of hope.
When I came about doing my son's website and furthermore the journal entries that I personally do I never really thought about how it may impact others. I often times refrain from doing more journal entries b/c I'm not looking for sympathy from anyone, I'm not asking for a handout, and mostly I'm not trying to place our burden (our pain, our hardships, our scenario) on anyone...All to often folks read "into" what some write/say and I never wish to portray ourselves that way. I simply put...am putting my thoughts on his journal b/c its a good way for me to clear my head, to keep from going insane, and/or worse. I do all too often not take that step these days b/c I just don't want to have folks look at Dylan poorly based on my views or how I see the world (most often).
We do the best we can with what we got...we aren't perfect and nothing about this life has gone perfectly but its our life and I hope by sharing it, others see it could be worse....you could be in my shoes (and on the flip side, I know our scenario could always be much worse as well...its a two way street and this life has shown me that). I'm fortunate for what we got but that doesn't make it any easier...its still tough.
-Noah
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