Monster Truck Mania!

After a false start a few weeks ago, we finally made it to the Monster Truck Jam show. Carson and Francesca had a blast, although C said he didn't like the loud noise. We all wore hearing protection of some sort. Carson sported the full blown Monster Truck tire earmuff style protection.

Carson wasn't too keen on taking a picture when the front loader was moving things around down on the arena floor.

Mechanical Mischief takes the jump right in front of us. (No zoom required here!)

Martial Law, however, broke a tie rod on the first jump and had to be towed out. And we didn't even have to pay extra to watch that! :-)

Watching the heavy machinery may have been just as fun to watch.

The Monster Truck show was a big hit for the entire family. Special thanks to Katie at Feld Entertainment for providing such awesome tickets and making up for the show we missed a few weeks ago!!!

Paul.

Same Blog, Second Verse

Same Blog...Second Verse, or is it third..... or fifty-third? I have lost count at this point.

Our clinic visits are starting to run together. At this point I think I could cut and paste a previous posting and no one would be the wiser.

Carson's ANC is up to 1820. Raise the dosages of both methotrexate and 6MP. Get ready for another visit in a week with a spinal tap, steroid round, vincristine IV push and infusion of pentamadine (antibiotic).

Wait a week or so, see where the counts go......

Repeat, repeat, repeat.......

At least the Monster Truck Jam is coming up this Saturday and will give us a break in the cycle. Thanks for hooking us up Ms. Katie!

-Jennifer

Band-Aid and Toy Collection

Just a quick note to say we are getting a lot of band-aids and toys to take up to the kids on pediatric oncology ward at the hospital. Right now we are up to 75 boxes of band-aids, circa 22 Wii/PS2 games, and numerous sacks of prize toys...and we're just getting started!

Carson sifts through the band-aids and talks about the ones he wished he could have. (Hopefully we won't be the recipients of this drive!)

It's been amazing to watch how the news of this travels. Keep spreading the word...and keep praying for the kids who are up there fighting cancer!!

Paul.

Thursday Clinic

We went to the clinic today and were immediately ushered in to an exam room and told it was part of "flu and RSV precautions". That's new!! Carson had flu nearly a month ago. Anyway, it is a new policy that those who've had flu or RSV remain in isolation for clinic visits for one month.

This was a fate almost worse than death to Carson because the isolation rooms do not have a view of the Route 50 and he can't see any cars, construction trucks, buses or passing fire trucks! This also means he can't run around the clinic making candy deliveries, nor hit the art and play area to visit with some of his pals. When you've been stuck and home with low counts, the clinic is a highlight of your week. To then be stuck in a room, with mom, AGAIN, is not something he was interested in, even though he does exclaim several times a day "I LOVE MOMMY!"

We made due with drawing a road on the paper of the exam table and playing with the cars he'd brought in. Then he forgot all about being in isolation when Ms. Gretchen came in to play with him! Crashing planes and cars is the best!

Carson counts were not as high as we'd expected, ANC of only 710; but it is enough to begin chemo again at a very reduced dosage. We start today with our medicine and strawberry syrup concoction then will go back in a week to see what's going on.

Meanwhile, band-aids and prizes are pouring in for the hospital. THANKS SO MUCH for your support!!! Keep 'em comin'

-Jennifer

P.S. Whoever brought the book and basketball to Carson - Thanks! He's enjoying both very much!

Collecting

Our visit and stay at the hospital last week made us aware again of small things that make a big difference on the pediatric oncology ward.

If you're local, or even if you're not, we are attempting to collect as much of the following items from now until March 4th for the kids fighting cancer at INOVA Fairfax. Most of these are EASY and INEXPENSIVE items that will put smiles on the faces of kids. These are specific needs that our fabulous Child Life Specialist, Miss Holly has requested.

Feel free to share this list with any group or any people who might be of help.

Here's the details:

Items Needed for Kids Fighting Cancer @ INOVA Fairfax

*as requested by Child Life*

· Small, inexpensive “prize” toys for boys and girls ages 2 – 12

o These will be given out in the procedure room on the pediatric oncology ward. This is where all procedures not serious enough for sedation, but still very painful, are conducted. Think dressing changes, troubleshooting mediport issues, IM chemo injections, and the like.

o Items must be new and in original packaging

o Examples include: Hot wheel cars, coloring books, small action figures/dolls, easy puzzles/games, etc.

· Wii and PS2 games (no PS3 systems just yet)

o These items can be new or used, and go a long way in relieving boredom. Each of the rooms has a system installed, but the game selection is very, very small.

· Band-aids with cartoon characters

o The hospital provides plain band-aids, but for young children the cartoon character band-aid is a prize in itself. Boxes must be unopened.

Going Home

We are all at home! Carson was released just before noon!


This photo was taken right before we got word that we'd be leaving the hospital. Carson had spent part of the morning handing out Valentine's Day candy to nurses and patients. We're happy, but there are still several children and families here that are fighting hard, please remember them in your prayers.

And thanks everyone for the support while we were in "the big house"!!

-Jennifer

Hospital Update

Paul reported that the IV IG finished around 2 AM last night with no more reactions! Yay!
Carson continues to have no fever and his ANC this morning is 430. He's still neutropenic, but things should be improving rapidly due to a high volume of monocytes (baby neutrophils that grow up and cause your ANC to rise). We are now waiting on the doctor to let us know if we're getting out today. It looks promising! We'll have to stay home, but that's where we want to be any way!

Thanks everyone for the prayers and loving support!

-Jennifer

Infusion Continues

Carson's IGG infusion is still continuing as I type this note at 9:30 PM. We started at around 3 PM this afternoon; and, as promised by the doctors, they are infusing slowly. We expect to finish the infusion by about 2 AM.

It is actually quite alright with us. Carson began to have a reaction around hour 3 when the infusion rate was bumped to 18 ml per hour. It began the same as it did 9 months ago, uncontrollable shaking, mottled skin and the feeling that he can't get warm. The nurse came immediately and the rate was lowered back down to 9 ml/hr. They gave benadryl this time (instead of a steroid) and Carson got better quickly rather than getting worse.

So...things are still going, we are still praying, but it seems that we might actually make it through this. With a little bit of luck and some more Divine intervention, we can bring that boy home tomorrow.

-Jennifer

Not Going Home

Carson's IG level is low, so he'll be getting a transfusion this afternoon. Please keep him (and all of us!) in your prayers. The last time he had this type of infusion he had a serious reaction - something we don't want to see repeated.

Paul.

Back in the Hospital

Carson started running a fever late yesterday...again. Ugh...it seems like we go through this every couple of weeks!!! Unfortunately, this time his ANC was 300, which means he is neutropenic and very susceptible to infections/viruses, etc. This earned us a room back up on the pediatric oncology ward.

Carson seems to be feeling fine. He is playing and watching movies...and basking in all of the loving, personalized attention he's getting from the nurses. (Who wouldn't?) We'll probably remain there until he stays fever-free for 24 hrs, or his ANC rises above 500. I'm hoping we achieve both. Today.

This is our first admission back in the hospital since last May. Please pray this is a quick, uneventful trip.

Paul.

Clinic Update

Our chemo dosage roller coaster continues in to February. Our doctor assures us he will find the right dosage. He probably could, if Carson would help out by not getting sick; but as of now, we are still finding our way.

The details: Carson's ANC had fallen to 580 since our weekend ER visit. It had been nearly 2000 on Saturday morning. Since he had restarted his oral chemos on Tuesday, there was no way to tell if the chemo had caused the fall or if this was a natural let down in the ANC after fighting off the flu.

All that means that we are back to 50% dosage on the 6MP and MTX after just having raised them two weeks earlier. Oh well, one good thing; Carson actually has Saturday and Sunday with no chemo to take!!

The vincristine and pentamadine (antibiotic) IV's went on as planned. Th 5 day round of steroids also began as well.-and so did the hunger.

This morning's breakfast: 2 bowls of Honey Nut Cheerios and a Special K protein bar! Yep, some things are still the same.

-Jennifer