April 27th was the Philadelphia Great Strides Walk. My husband and I formed a team (Team Heavy!) and raised money. Well more like I raised money. We had some family come out from Colorado to walk with us and my dearest friend Kristen came with her husband and her son. My freshman year roommate and one of my best friends came with two of her kids. Her son was diagnosed with Wilms Tumor when he was two years old. He went through a surgery to remove a kidney that the tumor was on, chemo and radiation all at such a young age. He's now almost 6 and his checkups have been clear so she knows what it's like to have a kid with a health problem and the constant worry you feel as a parent. It's nice to know I have someone who's been in the trenches to lean on. My sister was able to come as well along with my mother in law and her mom. So we had a small team comparative to the other large teams.
I felt weird being there. I often feel as though I don't belong in the CF community...that I might be parading my son, who is currently not sick or diagnosed, in front of other parents who have sick kids and others who have tragically lost theirs to this disease. However the other side is that I want to support this community that I now feel connected to. The most awkward part of the whole thing was registration when they handed me my team sign...and a yellow lei. I wanted to give it back and say I didn't need it but then I thougth twice when I remembered that Evan's doctor had told another CF mom that I met through Cystic Life that our boys shouldn't play together to be safe. So I took the lei and went back to our group and talked to my husband. I didn't want to put it on him but Michael said if the doc precautioned us from playing with another CF baby then we should practice the same here. I didn't like it but we did.
The walk itself wsa nice. It was a beautiful Spring day and the walk was at Citizen's Bank Park which is the baseball stadium the Phildelphia Phillies play at. We did a couple laps around the concourse and we got to do a lap on the field which was really cool. Connor loved touching the dirt and running around in it and we got a couple good photos. Evan was just kind of like WTF? the whole day. I think Michael enjoyed being on the field the most as he's an avid Phillies fan! All in all I raised $1600 for Team Heavy. Not a lot but every dollar helps!
A couple weeks ago I volunteered at another local Great Strides Walk in continued support of the cause. I can't say I have ever volunteered a lot but it felt really good even though all I was doing was handing out tee shirts and squirting antibacterial lotion on the hands of all the kids playing the games. It's definitely on my list to keep doing.
Thursday, May 30, 2013
Thursday, May 16, 2013
Makin' Babies
One of the bigger concerns I've had (I know...there are bigger concerns in life especially when it comes to CF) through this whole thing is whether or not Evan would be able to have a family when the time comes. As an infant the pulmonolgist would feel around to see if Evan has vas defrens and he thought he felt them. In February Dr. K referred us to a pediatric urologist. We went a week later and we met with Dr. C who is an older gentleman was an awesome doctor. Very upbeat, very friendly, very happy (when I got our bill Ii realized WHY he is so happy...oy) and he treated Evan so well even though he was crying and trying to crawl onto me with every ounce of his being. We finally got him settled enough to lay him down for the exam. Thankfully as he felt around he was able to tell me that he indeed felt two vas defrens! Great news and another step toward the goal.
The goal...what's that? I guess our goal is to come to a conclusion. I know we may never get a solid no answer but I suppose it's possible one day we could get a solid yes should Evan show late onset symptoms as they seem to be discovering more and more lately. How do aI feel about this? Ultimately I would obsiously love for the stars to align and the researchers to tell us that R1162L is in fact a benign variation. I don't think that is ever going to happen. Sad face. So, next best is that Evan never shows any signs of CF EVER. That seems to be fading as I think they are thinking he might perhaps have a touch of asthma which I'll get to another day. So, given asthma symptoms can sometimes be similar to CF symptoms, I'll always wonder if we're going down the correct path. Only time will tell for that. Worst case is that they one day decide ok he's got this, this and that and we think we can diagnose him with CF. That's not best case BUT the silver lining would be closure. But, for now, it's definitely a maybe.
The goal...what's that? I guess our goal is to come to a conclusion. I know we may never get a solid no answer but I suppose it's possible one day we could get a solid yes should Evan show late onset symptoms as they seem to be discovering more and more lately. How do aI feel about this? Ultimately I would obsiously love for the stars to align and the researchers to tell us that R1162L is in fact a benign variation. I don't think that is ever going to happen. Sad face. So, next best is that Evan never shows any signs of CF EVER. That seems to be fading as I think they are thinking he might perhaps have a touch of asthma which I'll get to another day. So, given asthma symptoms can sometimes be similar to CF symptoms, I'll always wonder if we're going down the correct path. Only time will tell for that. Worst case is that they one day decide ok he's got this, this and that and we think we can diagnose him with CF. That's not best case BUT the silver lining would be closure. But, for now, it's definitely a maybe.
Tuesday, May 14, 2013
Now this is a story all about how...
...I have a blog! And I stink at writing in it.
I've been going back and forth on whether I wanted to continue this blog. No one really reads it so what's the point? But then I remembered why I started and it wasn't to have a big readership but more for my own therapy and if someone happens to google CRMS or Evan's mutations DF508 and R1162L and somehow this blog comes up and gives them hope then I've done my job. While I don't write often when I do write a post it feels like I'm getting something off my chest so I'm hoping to keep up a bit more since I feel like I can't write this whole "CF grey area thing" off completely. So let's back it up to February.
I scheduled Evan's 1 year follow up with his CHOP Pulmonologist. I took my mom for moral support since Michael couldn't go. Overall the appointment went well and when Dr. K walked in he actually wondered why we were there since he thought he had told us not to come back when we spoke on the phone about the normal sweat test result. I don't recall those words coming out of his mouth and I'm sure I would have remembered that! So we talked about his illnesses in the last 6 months and the current dry cough he had been experiencing since his last cold. Based on this information he concluded that Evan probably has allergic rhinitis and ordered an allergy medicine. Since we weren't "symptom free" he told us to come back in August for a biannual follow up rather than waiting a year. I asked about Cystic Fibrosis Related Metabolic Syndrome and he said he wasn't going to go there just yet since he doesn't have enough "clinical" information to go on. From there I told him about the woman in Poland with Evan's same two mutations and that the only symptom of CF she has had was that she had difficulty getting pregnant and they had to use IVF. This put the idea in his head to refer Evan to the Urology dept to check for vas deferens. Basically we're going to tick away on a list of tests to see where the road takes us. Again, this was a very good appointment and since I was expecting bloodwork to be done and possibly a chest xray and sort of thinking that we would be walking away with a CRMS diagnosis I was on cloud 9! Mom and I took Evan to lunch and to the mall for some much needed shopping!
More later on the vas deferens check, a Disney vacation and a cough that wouldn't go away....
I've been going back and forth on whether I wanted to continue this blog. No one really reads it so what's the point? But then I remembered why I started and it wasn't to have a big readership but more for my own therapy and if someone happens to google CRMS or Evan's mutations DF508 and R1162L and somehow this blog comes up and gives them hope then I've done my job. While I don't write often when I do write a post it feels like I'm getting something off my chest so I'm hoping to keep up a bit more since I feel like I can't write this whole "CF grey area thing" off completely. So let's back it up to February.
I scheduled Evan's 1 year follow up with his CHOP Pulmonologist. I took my mom for moral support since Michael couldn't go. Overall the appointment went well and when Dr. K walked in he actually wondered why we were there since he thought he had told us not to come back when we spoke on the phone about the normal sweat test result. I don't recall those words coming out of his mouth and I'm sure I would have remembered that! So we talked about his illnesses in the last 6 months and the current dry cough he had been experiencing since his last cold. Based on this information he concluded that Evan probably has allergic rhinitis and ordered an allergy medicine. Since we weren't "symptom free" he told us to come back in August for a biannual follow up rather than waiting a year. I asked about Cystic Fibrosis Related Metabolic Syndrome and he said he wasn't going to go there just yet since he doesn't have enough "clinical" information to go on. From there I told him about the woman in Poland with Evan's same two mutations and that the only symptom of CF she has had was that she had difficulty getting pregnant and they had to use IVF. This put the idea in his head to refer Evan to the Urology dept to check for vas deferens. Basically we're going to tick away on a list of tests to see where the road takes us. Again, this was a very good appointment and since I was expecting bloodwork to be done and possibly a chest xray and sort of thinking that we would be walking away with a CRMS diagnosis I was on cloud 9! Mom and I took Evan to lunch and to the mall for some much needed shopping!
More later on the vas deferens check, a Disney vacation and a cough that wouldn't go away....
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