Monday, October 20, 2008

Bowling (for Brian)..

Yesterday our local FAAN chapter held a "Strike Out Food Allergies!" bowling fundraising event. Mark, B and I (along with Mark's brother, his wife, and their kids) attended and had a ball (no pun intended)! You always forget how much of a workout it is to throw around a 10 pound ball and use muscles you didn't know you had. But we had a great time and helped raise money for a great cause (and we even won a raffle prize - 2 lift tickets to Sugar Bowl - score!).

But the event wasn't without some seriousness as to why we were there. We were fortunate to have a very special guest speaker - Brian Hom's father, Brian Hom, Sr. was there to talk about his family's experience losing their son due to a peanut allergy just a few short months ago while on their first night of vacation in Cab San Lucas, Mexico.

My post here doesn't do his speech justice. Brian's composure while talking of the details of his son's death in front of his eyes was amazing. If you looked around the room, you saw other mothers (me included) crying as he recounted his son's last words to him, the nature of his son's allergies before the trip (just some hives that would clear up with benadryl), the details of how he died in the hotel lobby, the agony of planning his son's funeral just weeks after he graduated (and in close proximity to his 18th birthday), and how the true cause of death (anaphylaxis) wasn't listed on the death certificate (heart attack was even though the autopsy showed anaphylaxis).

This could have been any of us there.

The talk really brought home how serious food allergies are and that you should never make assumptions about them (specifically that your next reaction will be the same as the last). That you need to get tested properly by an allergist and take the proper precautions to keep your child safe (which isn't to say that either applied to him - apparently they did have epi pens there and Brian's brother, also peanut allergic, received a shot due to his reaction as well and his life was saved). Brian really wants to make sure families work as hard as possible to minimize the possibility of this happening to them.

Brian repeated a very well known statement: noone should ever bury their child. He's of course, right. You usually hear this from parents burying casualties of war. But I suppose we are fighting a battle of sorts, aren't we?

I hate to be morbid, but I think parents of allergic children hold this thought and fear of death in their back pockets at all times. It's always there for me, hovering, and it's a real possibility (which sucks). Personally I have thoughts of B's death more often than I'd care to admit and hate to think that there IS a possibility of her passing before I do. I have these flashes of the worst happening to B because I didn't plan well enough or wasn't there when she needed me - it's horrible and I know many of you can relate. It's absolutely terrifying to imagine, and obviously even worse to experience firsthand.

Personally I can't thank Brian enough for speaking to our group. I wish I could have done it in person, but I was so emotional after hearing his talk that I feared that I would break down. I'm hoping to find his email address so I can write to him though, to encourage him to keep telling his story.

So Mark and I are supposed to be going to Mexico next year with his folks for their anniversary. At a resort much like the one Brian's family went to. After hearing Brian's story, I'm not so sure this is a risk we're willing to take with B (that is unless we have a negative skin and rast at B's next allergist visit). Not to say that we will never travel internationally EVER, I just feel like we should hold off for a while (Mark felt otherwise until he heard Brian speak).

Am I overreacting? How many of you travel internationally? If so, what precautions do you take to avoid reactions?


alison said...

I was wondering how the bowling event went... that must have been so hard for his family and for you all. But probably a necessary reminder.

I travel to Cabo every year with my family. This year I feel more nervous than other years, probably because I know more. I take letters written in Spanish that describe my daughter's food allergies and emergency plan. I speak Spanish so that of course helps when asking about the food.

If you stay in a condo or timeshare that has a kitchen, you can go to the store and buy food to cook or bring food to cook so you are not always eating out. I always have to pack some food anyway because my daughter is allergic to so many foods.

I will probably write a post about traveling to Cabo after we get back -- look for it at the end of Nov or Dec!

Anonymous said...

Oh gosh, that poor family! We took a family cruise in January. We just did day visits to St Maarten and St Thomas. We only ate food on the ship. Disney Cruise Lines, by the way, is a AMAZING with the food allergy bit. Our allergist had me carry four doses of epi at all times and preferred that we rushed back to the ship instead of looking for help on the island is possible in case of a reaction. It was a 100% reaction free kind of a week. I think, with a bit of research, you can totally do the vacation. I want to empower my child and show him what he CAN do, not what he CAN'T do. Does that make sense? Recently a member on the Baby Center Food Allergy Board posted amazing, to me, information. NASA astronauts food can accommodate food allergies. Seriously, they can reach the stars if they want to. :-) Hugs from another food allergy mom. It's always scariest when we hear, first hand, about our greatest fear.

Connie said...

This is a very sad story. We all know that reactions can change from one time to the next, but I don't think we actually believe it; especially from benign to life threatening. Did Brian's dad mention whether they were able to administer Epi quickly?

Cherie said...

I would agree with ohblogthis: do your research. We were once backpackers and looked forward to introducing our kids to international travel. After the peanut and egg allergy diagnosis we've had to rethink. As a family we are only considering English speaking first world destinations at the moment. We want to be comfortable that in an emergency we could get the care we needed with no language barrier and adequately trained medical professionals. We recently holidayed in our own country (Australia) in a small town, and that was the scene of our first and only episode of anaphylaxis. We were in a restaurant where we clearly explained the allergy and asked to see the packaging of the food our son was to eat (a bowl of ice cream with choc topping) and within minutes of eating the reaction started. Cross contamination was the likely cause (blood work afterward suggested peanuts). It was scary not being 100% sure how to get to the hospital in a strange place and when we arrived at the hospital the doctor on staff had never administered an epi pen so while she dithered about trying to calculate his body weight and the amount of epinephrine he might need my husband administered our own epi himself. It shows that an accident can happen ANYWHERE despite the precautions you take as a parent. Its always wise to research what facilities are available to you in the event of an accident when you are not at home and in your familiar surroundings.

Pez said...

No, you are not overreacting! I remember reading about Brian's death right around the time dh and I were trying to figure out where to go on vacation (in the end we did not go) and it was that moment that we decided that now is not the time to travel outside of the country (except to Canada) for any type of family vacation.

I do think of Brian often and wonder how his parents are managing. I did not realize that his brother too had a reaction. Such a sad, sad situation.

ChupieandJ'smama said...

Gab, I remember when Brian first died that you mentioned to me that you felt like you didn't want to do the trip. I think as a mom, you have to go with your gut, but do the research first and then see how you feel. You can get chef cards written in Spanish and most resorts will be able to accomodate you. Ship some safe stuff down ahead of time too so you won't have to worry about things like snacks.
Before we did Disney I would have said NO WAY, but now that I've seen what can happen with a lot of planning I say give it a chance (unless of course you need an excuse to get out of going with your in laws ;D).
My heart breaks for Brian's family and the scarey thing is that I'm sure they DID everything right.
I'm afraid for Jason, but I'm also afraid to not let him live his life as he's meant to.
It's a fine line and I'm sure what ever decision you make will be the right one for B.

Michelle said...

The only place we've traveled (in terms of a resor destination) is Disney and they were amazing, as you know. But, I think I would he hesitant unless you are staying in your own condo and plan to make B's meals yourself. It's just not worth the stress and anxiety you will have in the back of your mind thinking of Brian's story. :( And, when my daughter was diagnosed with her peanut allergy, we were told to avoid Mexican (among other) resturants completely, as they use peanuts in sauces, desserts and in many of their recipes and the potential of peanut oil on a table (even if she isn't eating the food) is very real. I hate to scare you, because I know how much time and energy goes into vacation planning, but I think there are certain destinations (because of their cuisine alone) that I will probably do my best to avoid. With that said, the other girl Brian mentioned was killed from a local subway shop, so you can't put your life on hold. I tell myself that all of the time...we can't avoid everything, but I think there are certain things where you have to weight the risk/benefit. The difference is, you'll have B's epi pen and benadryl, which weren't available to BJ should anything's a tough call. Sorry...probably not very helpful! :(