Fly High Clare Bear

I need to ask for one last favor for Little Clare Bear.

Please pray for her family as they heal. Clare joined the angels yesterday.

I am at a loss for words...There was an entry into Clare's guestbook after her passing it brought me to tears:

"She fought so very hard. Maybe harder than a little girl has ever fought before... After so long restrained in bed to machines, how exhilarating flying free in Heaven must feel. You really are an astronaut now Claire. Fly far sweet Claire. You own the skies."

If you followed Clare's story, you will know that before Clare had her Bone Marrow Transplant, she had to undergo radiation. Her heroic sister, Phoebe would go on the visits and talk to Clare over an intercom, they would play astronaut. Clare was the astronaut flying high above the Earth, and Phoebe was mission control. What a brave mission they fought. Pray for strength, comfort and peace.

Godspeed sweet Clare

2,4,6,8

2 hours to Pittsburgh

2 hours in Pittsburgh

2 hours from Pittsburgh

...and we didn't even have a spinal tap.

It was postponed 'til this Thursday – tomorrow.

So we've had a couple clinic visits since the last update. As you can guess, things can get a little hectic around our house; just ask Grandma & Grandpa who came for a brief visit yesterday evening. I think they headed home and went straight for the Tylenol!

Anyway, Friday's visit went well. It was long considering we didn't have a spinal, and the appointment was late-day, so we didn’t get home ‘til nearly 7! But Josh got a new chemo, doxorubicin. For the first half of the infusion, the nurse sat with us to make sure nothing leaked from the line. We’ve been told this one can burn the skin. So far no side effects, except for the red-pee J but they said it would take a couple weeks for it to wear him down. Kinda like it will take a couple weeks before he loses his hair again.

Yes, Cookie Monster - I mean - the doctor, commented on how nice his hair was growing back, but warned that it would fall out it again this phase. Good news is, Josh has a cute baldhead and once it grows back, he probably wont lose it again. This week Josh will get more dox, and another spinal tap, on top of his regular chemos, which includes the vincristine, he also gets this in his port - an IV push – this one causes his fingers to go numb and his jaw to hurt.

As long as the first half of this phase doesn't drop his counts too low, Josh will continue to the second half, on schedule. I know I'm getting ahead of myself seeing as though we just started this phase, but I'm just putting that warning out there as the doctor put it to us. He says a lot of times the counts will drop dramatically and the kids will need platelets or blood transfusions to bring their counts back up to acceptable levels. He also cautioned us, that this is the phase where Josh might end up inpatient with fever and neutropenia, and gave us the run down of what to watch for and what to do when it does.

All that said, this past Monday Josh had another clinic visit. [And he goes again tomorrow] This was the first visit I didn't go. I was a little heartbroken, but Jon handled it well! The night before I made up all Josh's meds so that Jon wouldn't have to fuss with that. All four vials, including the squirt gun chaser, were laying neatly on his Spider Man plate in the morning, along side a tube of EMLA, the cream we usually put on Josh's port before we leave for P-burgh to numb it. It's supposed to be applied an hour or two beforehand to allow plenty of time to absorb into the skin & tissue. Josh still feels the pricks, but I imagine without it he would be even more miserable.

This time the cream went on his leg in preparation for the Peg shot. Jon slathered it on and covered it with Glad Press-N-Seal (as opposed to tape which Josh HATES having ripped off, even more than the pokes).

This, the sole purpose for Monday's visit… Can not be on the same day as the port chemos, can not be on the same day as the spinal chemo, and has to follow at least 3 days of steroids to help reduce any reactions.

Jon said they went straight back to a room, no paper work (yeah! for him) since we were just there 3 days prior. And since they only had to see a nurse, there was hardly a wait in the treatment room. Nurse Rose was right in, praised Jon on the EMLA masterpiece, and with Josh on daddy's lap, stuck the needle right in. He still cried (Josh not Jon ;-)), but when daddy requested the bin of toys, the nurse sent them to a playroom instead. Different than all the playrooms we’ve seen before. The pain from the shot was forgotten! Despite the bag of super heroes Josh packs every week, it never fails; someone else's toys are always better!

They got to stay A_WHOLE hour while the nurse watched for any adverse reactions. Good thing they even had big-boy toys for dad – a TV!

Soon after they head home with more meds and a mental list of things to watch for.

Josh's leg did break out in a rash as the day wore on, and not much swelling, but it was back to normal next day

Did I mention that Josh is back on the "Roids"? A 7-day pulse this time - and repeat again in two weeks. It has yet to affect his appetite, but I suspect any day now. Just about the time he ends the pulse...

Other than the normal inconveniences we've been enduring lately (the sometimes nausea and vomiting, the sometimes diarrhea, the brief finger numbness, the leg pain which causes his limp, and his irritable moodiness) Josh is doing pretty well. Oh, if you exclude his restless nights lately. For the past week or so, Josh has been waking up in the middle of the night crying. I don't know why. He doesn't have to go potty, he wont tell us if anything hurts, but with a few cuddles from mom or dad, he settles down enough to fall back to sleep like nothing happened.

Too bad mom and dad still remember. Especially when the 5 o'clock hour rolls around and the alarm starts to sound...

Clare

I need to ask everyone a favor.

There is a little girl from Maryland that desperately needs our prayers. Her name is Clare. In May of this year Little Clare relapsed after being completely off treatment for 16 months. Off treatment – OT. Which means Clare had completed her 2 ½ years of Chemo and was free and clear of cancer! (girls endure one less year than boys for anatomical reasons) 16 months later, the monster reared it’s ugly head. Four years earlier Clare was diagnosed with Leukemia, ALL, the same as Josh’s, November 2001. She was on CCG 1991, the same protocol as Josh. She was also 3.

Now she is 7.

Nearly 2 months ago, Clare’s brave sister, who was found to be a perfect match, gave the greatest gift a sister could give. LIFE. Phoebe checked in to the hospital, was hooked up to machines and bravely donated her bone marrow, the core of her being! so that her sister could continue to fight for her life.

Phoebe is home, Clare is not. Mom and dad juggle home and hospital in 12 hour shifts as their family is temporarily fractured. Clare now wages another war. She had been moved to the Pediatric ICU unit, and has been there for the last 37 days as her lungs battle for the next breath. I wont go into details, but in my mind, I picture a little girl in bed resembling Doc Oc with all the wires and tubes going in and out of her body, greatly outnumbering the 8 appendages our super-villain exhibits. One of the machines that helps support her life is called an ECMO. Two large catheters are placed in her groin, blue blood flows out of one leg, pumps through the machine, is oxygenated, then red blood is returned through the other leg.

This is supposed to give her lungs rest. Buy them time to heal. Build up her reserves to once again breath unassisted. Her parents report that they are rapidly approaching the end to the time she can safely be on the ECMO.

She needs prayers. Please pray that the remaining time is enough to rest her lungs so they may work again as they should. Please pray that her family finds the strength to continue to make the decisions that help Clare strive. Please pray that her doctors and nurses and technicians find the knowledge they need to heal Clare. Pray for Phoebe, who misses her sister dearly. You have been so generous in your prayers and support. We are thriving with both. As hard as Josh’s treatment seems at times: the dreaded clinic visits, the humbling ‘accidents’, the nightly meds, the weekly trips, the puke bucket… there is always someone who needs a prayer that much more. As Benno and Karen (Clare’s parents) humbly quote, reflective of the hurricane, “everything is relative”. As I tell the girls, you may seem ordinary standing next to a super-hero like Spider-Man J, but imagine how vital you are to a 3-year old toddler wanting a Popsicle out of the towering freezer!

Yesterday, Monday, at 10 a.m., was a moment of silence, a time to reflect and hold Clare in one’s thoughts and prayers, as she underwent another bone marrow aspiration at that exact same time. The results came back clear. She remains in technical remission, but she still needs our prayers. Your pleas and prayers are so powerful, if you can, please give them to Clare today!

If you so desire, you can visit Clare’s site at her Caring Bridge Page:

www.caringbridge.org/md/clareschmidt

Stickers, stickers everywhere

Have I ever told you how much Joshy LUVS stickers?

Stickers, stickers everywhere,
Stickers, stickers in my hair!
On the windows,
On the door.
I even put them on the floor!

Oh yes, have you happened to check out the pictures and spot the pic of Joshua’s head plastered with a few ‘here and there’. How long do you leave them stuck to your front windows for all the neighbors to admire? And what about the dog's big fuzzy butt after he gets up from his slumber on the floor that once housed that same sticker like a leech ;-)

It’s a wonder that he has any stickers left at all. Well any unstuck stickers. And believe me, Josh got LOTS of stickers in the many cards he received for his birthday. If it weren’t for Mommy and Grandma F stashing some of them, they’d all be wallpapered to the nearest inanimate (or animate) object that Josh could find! That may be the ONE sole highlight of any of Josh’s trip to Pittsburgh week after week: the stickers he gets from the nurses. And who can say no to those flashy baby blues when he reaches in the basket and pulls out more than he’s allowed?

If you tell him two, he’ll flash you three fingers and bargain for more.
But you better watch close, as he counts them to FOUR!

So what brings me to today’s post? Could it be the dog with the sticker on his butt?

You thought I was joking?

I want to say: Maureen, thank you for signing Josh’s guestbook, I am SO glad to hear everything is relatively okay for you now and you are safe from harm’s way. We have been praying for you and thinking of you daily. You have a contagious outlook! Thank you for all your prayers, even when you needed the prayers yourself!

In other news: Jon and I celebrated yet another anniversary this week. Too bad we forgot it... Yesterday as I sat on the front porch with the boys chatting with Jon’s parents, I see Jon pull up and get out of the van with a bouquet of flowers. My first thoughts were: he got them because he knows I’ve been having a hard time since going back to work or maybe he’s trying to earn brownie points. He gets up on the porch and wishes me a Happy Anniversary.

D’oh! How could I forget? And how special that he remembered, albeit a few days late, but it was more than I could muster. I think that was a gift in itself!

Today: Kaitlynn played in a Make-A-Wish softball game. It was an exposé to kick off the MAW tournament held this weekend. We got ourselves a couple of awesome ‘Share the Wish’ tie-dye tee shirts, but alas they didn’t have any in Joshy’s size.

Anyway: Josh had an oral chemo yesterday. MTX. It’s the stuff he usually gets shot into his spine, but this time, in anticipation (and empathy) of the intense months ahead, he gets to swallow it. We have to crush it, like his other nightly meds, and disguise it with yummy cherry syrup. It’s not much of a diversion, though, as Josh still hates taking it, or any med for that matter. We have resorted to giving him his own large syringe filled with water to take as a chaser. Just a side note (and Grandpa can attest to this) Josh also likes to use it as a squirt gun, and he insists on having it filled over and over and over. So, just as the spinal MTX makes Josh nauseous, so do the pills. All 5 of them. Not an hour later, Josh comes running to us with his hand over his mouth. “I gonna poo’k”, he says. Jon runs for the bucket, I carry him to the kitchen. False alarm. But he walks around the house with the bucket in hand, just in case, making several unsuccessful attempts to purge that poison from his system. So now we get more medicine for his poor little body to help counteract that side effect.

Bed Time: This night Josh follows mommy upstairs opting not to fall asleep on the couch as he’s grown accustomed to doing since the day we’ve come home from the hospital.

It’s mommy’s turn to take her meds. Just a single pill. Pales in comparison to the ones I just crushed, but I take it with a swallow of Diet Coke like a trooper. I see Josh look from me, to the bottle of pills, to the can of soda. He thinks that looks like more fun. He grabs the medicine bottle and wrestles with the childproof lid. Maybe mom’s tastes better??? So I think, maybe Josh can try to swallow his meds. I’ve read tips from other moms who have their child practice with mini M&M’s. Good idea, but Josh is too content with just chewing the brightly concealed chocolate!

Stick the single sugar capsule on his tongue, gargle mouthfuls of juice, swallow, chew… Chew? How’d that bugger manage to escape his esophagus? ‘Pill’ after ‘pill’, he manages to swallow the drink, but not the candy. Half bottle of M&M’s later at 11(!) o’clock at night, we call it quits. Well at least we got some nourishment in him ;-)

Childhood Cancer Awareness Month

Hello every one, my computer is suffering some kind of mishap, but for now, I've found a way around it... still need to get it fixed, but too lazy to find my computer discs.

First I want to say I hope all our Louisiana and Alabama friends are safe and sustained minimal damage from Katrina. You guys have been in our thoughts and prayers and we hope to hear from you soon!

Second, hope everyone is having, well... had a nice holiday! We went to a picnic at my aunt's (held by my cousin) on Saturday. Josh got to play with some boys his age. It was nice to see him running around and keeping up with the best of them! Today we went to mom and dad's house (Jon's parents) and had a wonderful time! We loaded Josh's truck up in the van and lugged it over there. He drove it all around the back yard and didnt even run over grandma's flowers once! I think he may have *drove* grandpa nuts though, as they were collecting the balls in the yard. Josh was driving and grandpa was navigating. Josh may have gotten steering down, but not listening ;-)

Of course I have more pics.

On another note -- I wanted to let everyone know that September is Childhood Cancer Awareness Month. And something I just learned today is that on Monday, September 26th, Chili's restaurant will donate 100% of their profits to St. Jude Children's Research Hospital! Now I know that Josh doesnt go to St Jude's, but everything that our hospital knows, stems from the research done there. Although the cure rate for Josh's type of cancer and risk category may exceed 70%, 10 years ago he may not have been so 'lucky'.

For that we are extremely grateful.

However; there is still 3 out of 10 children who suffer a relapse and dont have as much luck.

And for THAT, we will not stop until there is a CURE.

Also, for those of you that may not prefer Chili's or maybe can not get away that day, Chili's is also hosting something called "Create a Pepper". During the month of September, for a dollar you can purchase a pinup of a pepper to color and have displayed in the store! Or if you go online you can buy your own Create a Pepper Fight Childhood Cancer tee-shirt.

Here's a little clip from their website:

Last year, Chili’s raised more than $2.5 million through its 850 company-owned and franchised U.S. locations. For more information, to create a pepper online, or to purchase a “Create a Pepper” t-shirt, visit www.createapepper.com.

THIS JUST IN -- in case you are looking for the older pictures ;-) here are the links to their folders:

Joshy's 3rd Birthday

Josh's original photo album

and the new one:
Labor Day and more