In the interest of posting something that's not all doom and gloom (I guess most of it is not so much been doom as gloom) I've got to catch up on a few "fun" things that we've managed to do this year in spite of the bad news we received regarding Emmah. I also must point out that our definition of fun is somewhat tempered by our situation.
So before anyone gets on me to finish writing about the Make-A-Wish trip... you probably forgot about that one... I will get around to it. I'm writing about our trips to Williamsburg and our most recent trip to the tourist trap that is Ohio and how they're connected.
First Williamsburg -
This past May was the band trip... originally it was scheduled for Myrtle Beach, but due to the wildfires at that time, they thought it best to rethink it. I would also like to add that there was also a band competition involved in this trip. So it was business and pleasure for the kids. The rethinking made them think that Myrtle Beach was off the menu. I don't know what led them to make the decision they made by going to Williamsburg, but that's where they ended up going. I find it interesting that they managed to find a competition out there too... perhaps it was just moved. Of course I'm not too immersed in the world of Jr. High band competitions, so for all I know there could be one going on right now.
They did very well and took 1st over all and either 1st or 2nd in everything else and ended up coming home with several trophies.
We were at that time trying to harvest stem cells out of Emmah... you may or may not remember from previous postings. At any rate because of that (the attempts at getting her harvest worthy) there were many transfusions... blood and platelets... seemingly like every other day. Emmah's body decided that it wasn't going to sit still for it and protested by "hiving up".
Since early on in treatment, Emmah had been pre-medicated before receiving blood products and this was no exception, but in spite of the medications, she still hived up... pretty severely, but not life threatening... nothing anaphylactic. Still we didn't like the idea of her traveling on the bus and being 900+ miles away from us, so we loaded up and decided to take the clan camping simply so that we'd be there if anything cropped up... and ensuring that since we were there, nothing WOULD happen.
They (the doctors) knew that she was going on this band trip and so they prescribed Prednisone for Emmah to help with the hive outbreaks. Now to be clear, she was hiving up after the transfusions had stopped... like she hadn't had a transfusion for a couple of days and she's still hiving up. All anyone dared to guess was that it was in fact the transfusions causing this reaction. So it was Prednisone and Benadryl to handle the hives.
In typical family style, we weren't packed and/or ready to go when they were going... they being the band. See our intent was to just tail the buses out there then we'd never be more than minutes away. In reality... we were just minutes away... A LOT of minutes... so much in fact, they have another name for that many minutes... it's called an hour or in our case hours. We had beforehand secured all the cell phone numbers and gave them ours to ensure that we'd be able to make contact with each other. So as darkness fell and we were in the final stages of loading up, we got a phone call from Emmah saying that the hives flared up.
I'd like to add at this time that during the process of our harvest attempt, there was administered a high dose of chemotherapy that was causing her hair to fall out again. Like the previous time that she lost her hair, she was kind of in denial and thus not wanting to get it cut short in an attempt to make it less traumatic, but rather she let the hairs fall as they may... and they did. Finally on the day of departure, she came to her senses and allowed me to buzz her up. This made her head look like a patchy, fuzzy, pasty white orb with red spots/splotches... the Prednisone adding to the orb-ness. I realize that this isn't exactly a Monet image and more of a Picasso, but that's the way it was for her.
So the call comes in... it's Emmah and the hives are acting up again and the Benadryl stopped/isn't working and she can't take any for a while. We're unsettled to be getting the call, but even more unsettling was the fact that they were calling from Fort Wayne, IN… that meant that we were a good 4 hours behind.
Yippee!
After a call to the doc on call and that doc returning a call to Emmah, it was decided that there wasn't any need for any emergency action... like calling an ambulance or taking her anywhere... since there wasn't anything anaphylactic going on. It was about this time that we contemplated/discussed her taking a half dose of the Benadryl every three hours instead of a full one every six. This allows for a more even delivery of Benadryl than the spikes and falls that she was getting with the full dose. At the time of the call, we were in fact minutes away from getting on the road and once things were talked through and settled, we did in fact get rolling.
Now we knew that we were going to be driving through the night... not a highly recommended practice and getting harder as I get older... or perhaps it has more to do with the lack of sleep that always precedes us leaving for a trip. What it ended up being this time was a few stops at a few rest stops along the way to try and take the edge off and enable me to continue and push on til morning light. After a long night of driving, day broke... thank goodness... and we continued on our way knowing that with each stop, we were getting further and further behind them. Then there was the day that it took to get through the DC area.
Ever driven in and or around the DC area?
In a word DON'T! Maybe it's just me, but each and every time driving there is a nightmare. I mean the absolute worst driving (or more specifically non-driving) I have ever experienced... EVER! We finally arrived at the campground, but we were (as is typical with us) under the gun. Daylight was fading and we also needed to get more Benadryl to Emmah.
We got the tent set up enough and headed out to get across town to get to Emmah who was at dinner following their performance... so she was in uniform... a wool uniform... a hot wool uniform. When we got there and she came out, she looked miserable. She looked like a hot strawberry... red with patches of red and compounding the problem is that for that time of the year it was unseasonable warm and humid.
The next day they were going to Busch Gardens and we were still concerned as to the control of her hives. They had extra tickets to Busch Gardens and offered tickets to come to the amusement park... not that we would tail Emmah, but the thought was that we'd be at/in the park should anything arise. We arrived at the motel that they were staying at and Emmah looked great so we decided that there was no need for us to go, but they told us to keep the tickets just the same... since (and I think) they were donated? Emmah went to Busch Gardens and we went back to the campground deciding that we'd keep checking in on her via the phone.
We hung around the campground riding the banana bikes that they had and the kids went swimming and played on the big bouncing pillow. Emmah's day proved to be uneventful and she had a good time. As the weekend was drawing to a close and we readied ourselves for the long return trip, it was decided that Emmah would in fact ride home with us instead of the bus. So that's what we did.
By now you might be saying to yourself (or perhaps not) what does ANY of this have to do with Ohio other than we passed through it?
Remember those passes to Busch Gardens that they said that we could keep? They didn't/don't expire until November. We contemplated making a return trip when Emmah was done with treatment mostly because since her platelets were still low for this trip. They (they being the doctors) don't approve of her going on any rides that would be jarring... there's no need for any kind of internal bleeding or anything like that, so she spent her day there not doing much of anything other than hanging with her friends and watching them. So we promised her and the kids that we'd use those passes and come back out in the fall before they expired.
So it's the fall... and we "owe" a trip. So we started planning a return trip to Williamsburg. The more we planned and thought through it, the more it was shaping up to be another "stressful" trip. Stressful in that a lot of driving would have to be done and things would have to be packed in in order to make the most of our time there. The more we laid things out, the more it was looking like the trip wouldn't be all that "fun".
First there's the business of driving. I didn't want to make it a one day drive again, so we started talking about two days out and two days back. So right there there's 4 days of driving. We were leaving on the 6th and getting home on the 12th... that was the plan. So 2/3 of the time away was shaping up to be spent driving.
Hmmm...
Then there was the business of the passes to Busch Gardens... a ONE-DAY pass to Busch Gardens. So we'd go and most of the kids would be too small to ride the majority of the rides anyway. Then Julie and I aren't in the best of shape (both us have had some back "issues") thus rendering us less than optimal candidates to be riding the rides. So that of course leaves Emmah and Nick to rely on each other to go on the bigger rides. Well... what if one doesn't want to go on a ride... then what? Ask someone? "Hey Mac... you wanna ride this ride with my kid?"
I don't think so.
So let's see... 4 days driving... one day in the park. Hmmm, that still leaves a day to fill... and gee really only leaving Colonial Williamsburg to walk around. We just didn't see the kids being all enthused about walking around Colonial Williamsburg. It was mutually agreed upon (upon further discussion) that this wasn't looking like the best choice.
In the end, we decided that maybe going all that distance wasn't the best idea after all especially if what we were looking for was good quality family time. Something in the 5 to 6ish hour range of driving would be more ideal. Our thinking was such that we'd still have the rest of the day (after arrival) to do something. Yeah... right... this is us we're talking about... we never leave on time and we always (especially on trips) run behind.
But what to do and where to go?
We had been (previously) given a monetary donation by a friend (who to this day remains anonymous... thanks again anonymous friend) and we used it to put towards a family membership to the Museum of Science and Industry. The membership level that we purchased also gives us entry to other museums around the country as members and/or with membership perks. There are museums all over that participate in this program.
I don't rightly remember how the "plan" came to fruition, but we ended up looking at the Columbus Zoo. Then that spurred the idea in Julie to check and see if any museums were on the list of participants out that way. Ultimately we ended up planning a trip to Ohio to visit Boonshoft Children's Museum and the Columbus Zoo with a trip to an apple orchard/pumpkin farm on the return trip home.
So we camped at a KOA in Brookville, OH for the week making the trek... an almost 90 mile trek... to Columbus three times. I know, why didn't we find/stay someplace closer? Well, Boonshoft is in Dayton which is really close to Brookville... like 12 miles or so and the KOA we were staying really was the most convenient. We planned two days for the zoo and two days for the museum. What we didn't know was there was a really cool museum in Columbus the COSI museum (Center of Science and Industry for long). They were also a member... thus adding a trip to Columbus. It really was a cool museum... they both were.
As for the zoo, we ended up getting a family membership (good for one year) because when everything was added up for one day passes, it was only ten dollars less than the family membership... at least the level of membership we were looking at. So now we can go back any time we want... it's just 5 hours away.
We worked around the weather and Emmah's condition (never did make to the apple orchard... we figured that they weren't going to have a wheelchair to "rent" for Emmah to get around) and managed to have a "good time" in spite of Emmah being in pain and Julie flipping out whenever Emmah would wince and then Emmah getting upset that she was upsetting Julie and...
Then there was also the knowing that when we got back that we'd be heading on in to "start something" for Emmah.
So you see, there really was a connection.
I don't know how ambitious I will be in the coming days with potential hospital trips and trying to tie up some loose ends on the house before winter setting in, but (and I am making no promises here) I will try and get a couple photo albums posted from the two trips. I will add them in this post.
As a side note here and totally unrelated; the water heater problem is a problem no more... installed the new one today. Gotta love having hot water...
KEIYTAP
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