Friday, September 7, 2007

Short Story:
Despite a trip to the Emergency Department (ED) yesterday, Frankie is doing very well today (see below "Long Story").

Next Friday, September 14, at 7:00 Hamden High School, there will be a fundraising event for Frankie. The only information I have right now is that it will be either a softball or baseball game between the Hamden PD and a team from Wallingford. I'll update when I can, but keep the date!!

Long Story:
Where to begin. Sometimes, heck, all of the time, my days blur into one another. Before I know it, days and weeks have gone by and it feels like I haven't gotten anything accomplished. But, enough about me...

Thursday, before Labor Day weekend, Frankie went to clinic for blood draws. His ANC had dropped to under 500. So, I gave him a GCSF shot. He normally gets low-grade fevers after his shots, and he did not disappoint... So yes, the holiday weekend, Frankie started with low-grade fevers. His temp never got up past 99, but that's still high for him. Frankie's temps usually run around 96-97 degrees, to give you a baseline.

On that Saturday morning, we noticed a rash beginning on Frankie's feet and on his forehead. So, of course, GvHD came to mind. And, as the weekend passed (without fever, mind you, thank goodness) the rash got worse.

However, when I called on Tuesday, Carolyn suggested that we hold off coming to clinic until Wednesday. Because of the holiday, both clinic days were happening on Tuesday and the already small clinic was over-crowded. So, since Frankie wasn't showing any other signs of not feeling well, we made arrangements for him to be seen on Wednesday.

Wednesday's clinic visit went fine. But, his ANC wasn't completely back to normal. It was 760. We've been wrestling with this up and down ANC game for quite some time. So, we decided to see what would happen over time... to see if he would self-regulate or not. The plan was to come back to clinic next week to do a recheck... That was the plan...

Yesterday morning, Frankie had Physical Therapy at 8am. Prior to the session even starting, he knocked over a chair (presumably to get my attention), walked over to his books and started coughing. I knew what was coming (up) next... breakfast... yup, he vomitted all over his books.

So, condensing the next couple of hours... he kept vomitting and experiencing some really horrible diarrhea. Calls were made back and forth between Yale and myself. Again, clinic was extremely overcrowded, so Carolyn asked if we could wait until 1pm to bring him in. Since he had pretty much collapsed from pure exhaustion, I felt it would be best to let him rest.

Unfortunately, when we got to clinic at the arranged time, there was, as I put it, "no room at the inn." We were redirected to the ED. We weren't exactly thrilled with this move, but what else were we to do?

Wrapping this up as quickly as possible since I have rambled on way too long... Frankie started to perk up even before they accessed him to give him fluids. Our nurse drew blood for all sorts of cultures and I had brought them a present (stool) for them to check as well.

By 5:30pm, we were back home! That was a first... going to the ED, and actually NOT getting admitted. And, since then, he's been doing so much better. He's not 100%, but he's not nearly as sick as he was yesterday.

So, basically, we all believe that what happened was a typical pediatric virus! Nothing transplant related! wow... is that possible??? Okay, he still has the rashes, but the vomitting and diarrhea is gone. So, he's probably still battling the virus, but that's normal, because his immune system is still compromised, it will take longer for the virus to completely get out of his system.

I think that's about it... remember... fundraiser next Friday night at Hamden High School!

Monday, September 17, 2007

Since I don't really have a "Long Story" to tell this time around, I'll just write your basic update.

First, check out the new pictures! We went apple picking on Sunday, so these photos are much better than the last set I uploaded from the PICU in July!

Second, Friday's fundraiser was a lot of fun. It was nice to get out as a family again, doing something normal. This was our first fundraiser that all three of us attended. I totally forgot my camera, so I don't have any pictures of that night... sorry. :(

Many thanks to the Hamden Police Department, Soraya, Officer Pentera, and the Silver Bullets of Wallingford for a great night out! We brought the Hamden PD some luck that night, so I feel even better about that! Unfortunately, we couldn't partake in the pizza and drinks after as it was passed Frankie's bedtime.

Frankie was presented with a awesome Hamden PD T-shirt with "Frankie D." on the back and a signed softball. Both teams also raised money toward Frankie's COTA fund. Thank you, Thank you, Thank you!

Also, more thanks go out to our family and friends who were able to make it to the game. Again, it's nice to feel "normal" again. I hope this becomes our pattern now.

Frankie has been doing well since our last clinic visit on Thursday. His skin was a bit pink and bumpy/rashy for the doctors and Carolyn, so we didn't make any changes with his immuno-suppressant drug.

Wow... this is turning into a "long story" now isn't it??? I digress...

We did stop the BP patch since it was falling off every couple of days and his BPs have been "ok" even by Renal's standards. So, this Thursday I just have to bring Frankie in just to have his BP checked. Then, the next visit is the 27th, all things staying status quo, that is.

If things are good on that visit, we're going to discuss Frankie getting re-immunized so he can (gasp) possibly (another gasp) attend school! Wow. I know I'm probably shooting myself in the foot for even writing about all of this, so I will pause for all of you reading this to knock on wood for us.................................................... thanks.

That being said, I sent my resume out to a couple of places (another huge gasp). It's a little weird thinking about it because I haven't worked in over two years. I gave it to a friend of mine who actually was nice enough to say I was probably over-qualified for the job. My brain is mush and needs an incredible amount of time to adjust back to the Cynthia-Jane listed on the resume. So, we'll see. Again, I'll pause for those of you who will, yet again, knock on wood for us.................... ...................................................................... thanks.

So, my dear friend, and you know who you are, here's your update. I'm surprised I haven't heard from you before this! I can't believe I beat you to the punch! :)

Before I forget, and I'm sorry that this has turned into the "Long Story" I didn't think I was going to write tonight, but this is important...

MAJOR PRAYERS are needed for a precious little girl, KACEY (2 years old). Her link is here if you would like to share in her story. We met at Yale, 7-West, many moons ago. She is in desperate need of prayers as she approaches her transplant (stem cell). She has relapsed and needs to heal before making the trip to Boston.

Friday, September 28, 2007

It is with an extremely heavy heart that I write this. Our sweet, beautiful transplant friend, Noelle Naylor, passed away yesterday.

Please pray for her and her family that they can heal and find comfort in time.