Monday, January 22, 2007

Too Toxic?

1 year 7 months and 21 days since diagnosis. Since that date 19 children from my Childhood ALL (acute lymphocyte leukemia) support group have relapsed.

19 children in 20 months.

8 children have passed away. Including one over this weekend.


Most of you probably remember me posting about Clare. I was so devastated then. She was the same age as Josh when she was diagnosed; she was on the same protocol Josh is on now. It was the first death I seen from this awful disease. 8 children - and a year and half later - it doesn’t get any easier. Donovan was barely 2 years old. He fought a HARD battle nearly his whole life. He was just over a month when he was first diagnosed. Baby D and his family used to live in Indianapolis, but moved to North Carolina over a year ago when Donny underwent his Cord Blood Transplant at Duke. Baby D and his family are HUGE Colts fans. I sat on the edge of my seat tonight as I watched the second half of tonight’s game. I believe the Colts had an extra player pulling for them tonight from the sidelines!

Since our beloved Steelers aren’t in it this year… I gotta say – GO COLTS! GO! Let’s go win that Super Bowl! And if you'd like to leave a message for Melissa and their family, follow this link.

In other news: I haven’t really updated cuz honestly, I didn’t want to “bug” you guys so soon

But now that I’m here…

Josh’s last visit went extremely fast. Considering… It was a spinal week, so we left Erie early (read: 4 a.m.) but he was the first patient on the OR roster. Had a new anesthesiologist... and don’t know what he did different this week, but Josh woke up extremely fast this time and was in wonderful spirits. Ate not only the one [required] Popsicle but asked for another! Imagine that… and this was BEFORE his roid-boy week.

So we made it up to his clinic appointment a whole HOUR before it was scheduled… in comparison, usually we are late to the doctor’s appts on spinal weeks. Here we hit a little snag. I guess Joshua is showing some toxic side-effects from one of his chemos, Vincristine (aka: mean christine). So the doctors had to decide on whether he should get this month’s dose. In the end they decided the benefits outweigh the risks and he received his IV-chemo as scheduled. Now, I guess I should also mention that Josh’s counts have been doing EXTREMELY well. Too well actually. Remember when I’ve told you that in order for the chemo to do its job it kills the cells in the blood – the good with the bad? So another of his chemo doses, the one that he takes orally every night, was raised. That and they raised his weekly oral Methotrexate dose. Yet another chemo. These are the little orange tablets Josh _hates_ taking, there are 5 of them and the part he dislikes is having to swallow so many. After the first few he tries to convince me he’s had enough and is done. Anyway, he now has to take 6… so far he really hasn’t noticed the difference ;-) It doesn’t hurt that I try to sneak in two at a time… ;-)

Doesn’t really make any sense does it? How one chemo can be too toxic, and the other not strong enough... Guess that’s why I’m just the willy-nilly mother sitting not-so-patiently on the side-lines. Although, sometimes I do think I deserve an honorary MD badge!

And to wrap things up, Josh will go back to Pgh this week to have some test done on his heart to make sure there wasn’t any damage done caused by yet another chemo, Doxorubicin (I hope I spelled that right cuz I don’t feel like looking it up at this hour) that he had way back in his Delayed Intensification Phase. ***Remember Ding Dong D.I. is done!?

So that’s it. Two chemos were raised; we have an echo this week and go back in two weeks for our regularly scheduled chemo appt. No spinal though… just “mean christine” and counts.

Until next time… Love from the whole clan!

Wednesday, January 10, 2007

Be Better Tomorrow

Two updates in one week, someone mark it on the calendar! Many of you probably haven’t even read yesterday’s update yet. Don’t worry; you didn’t miss much, just a bunch of wee-morning mush.

So it’s 5:00 in the morning. Again I can’t fall asleep. Not like I haven’t tried. The house is silently still, all but the sound of Jon’s heavy breathing, sleeping in the other room on the couch. I went upstairs to bed once. I just laid there, my head rushing with a million thoughts. I miss mom. I keep picturing her there, sitting on the edge of my bed. I can smell her perfume. I can still hear her words.

Few of you may know October and November were rough months for me. One day in particular, just before Thanksgiving, I didn’t even want to crawl out of bed. Jon couldn’t coax me out, the boys were busy with their play, and the girls were in school. But Jon, he had went to his parents house that morning, and I imagine he told them I was feeling down, and mom, despite how she must have been feeling herself that day, came to our house, made the grueling ascent upstairs (bad knee, chemo pains and all) and gently convinced me everything would be okay. And she repeated the story she told me several times before of a conversation Josh and her had on the phone one day, and Joshua said to her “everything will be betta' tomorrow”. I don’t think it would’ve mattered one bit what she said to me that afternoon. She could’ve told me that she would beat me over the head with her cane if I didn’t get up. Just the mere fact that she was there, just her presence sitting there with me on the bed, knowing what her and Josh and inevitably others have had to endure, made all my sorrows seem trivial in comparison. And deep down, I already knew it would “be better tomorrow”. It always is.

But it was nice, just knowing that she was there for me. That she would always be there for me. Even now, through my tears, I can smile, knowing she is still here for me, even if only in our memories.

So I’m lying in my bed, and my thoughts drift from her sitting on the edge of my bed to us sitting in her living room. It’s just before Christmas. Jon and dad are in the kitchen hamming it up. Mom’s showing me a picture book Aunt Louise sent to her. We laughed at some of the pictures and the narrations she put with them. In particular, one of mom squeezing Aunt Carol’s arm when they were just babies themselves. I can still imagine her far off look as she remembers the moment.

Now my thoughts drift to mom lying in bed, it’s few days before Christmas. And now I’m sitting on the edge, and I’m trying to convince us both that “it will be better tomorrow”. She’s telling me a story about Aunt Kay. They were on the phone earlier. It’s a story about tires. She’s barely able to focus on the words to tell, but you can tell this story is special.

Finally I decide to just get out of bed. Perhaps now, with my memories etched in this journal, I can leave them for another day.

Yesterday I was going to post about Oreo cookies. Joshua’s favorite. I can’t tell you how many times mom and dad would stop by just to drop off a gallon of milk and a package of Oreos. Heaven only knows, they never lasted through the day, but the kids (and dog) enjoyed every last crumb. The other day we were walking though the store, and we passed an isle that had Oreos displayed. They were on sale.


I couldn’t help but smile, point them out to Kaitlynn, and throw a packet in the cart. To Josh from Grandma.

Tomorrow Josh has an appointment in Pittsburgh. It’s a spinal month. We already know it will be a long day, but it’s almost scary how routine it seems anymore. In an answer to one of yesterday’s questions, this is his 15th spinal tap. Intrathecal with Methotrexate they call it. Five of those spinals were postponed to other dates; due to low counts or the multiple blood infections he had the beginning of last year. But he still got them. Fourteen down – only 7 more to go. He only gets them every third month now. Almost seems surreal. We’re in the single digits now. Really is hard to believe that we are halfway there! As my best friend, Alina, has been telling me all along, look for the light at the end of the tunnel. I think I can start to see it. Not that it doesn’t scare the heck out of me, or that I’m afraid to jinx myself, or that I don’t worry about side effects he might have to endure in his future, but I can see it. I can see that light.

It’s now an hour later… I sure know how to ramble on. As mom could talk about nothing forever on the phone, my fingers can do the same… I’ll be on again. Perhaps Friday, with a day-after report.

With all our love ~ sixteen-ever!

Tuesday, January 9, 2007

Halfway to the Finish Line

It's past 3 in the morning here - it took me WAY longer than expected messing around with special effects and *junk*


This will be short.

Maybe tomorrow I will find some time to update further.

Maybe I'll update it before anyone even reads it around

If I don't --- leave a message in the guest book that tells me. I see the counter climbing, but I swear half of them just might me me - well maybe not half. BUT, I was going to write something to the effect that it was getting close to 7600 visitors. If you were the magic number sign the guest book. But all my messing around and *I* ended up being the 76th-hundred.



My update was going to include something about being halfway there.

1 year, 7 months, and 7 days ago our world (as we knew it) was turned upside down. We found family and friends where we didn't know we had it. And our lives and routines changed dramatically. Sacrifices were made and bonds were formed. But most of all, we learned to put things in perspective. We work to remember what is REALLY important in each in every day. I will be the first to admit, sometimes it's a struggle, but we get there. It's all about each other, and making the most of every moment. It's hard to believe we've made it this far already. Much love to everyone that has been a part of our 'moments' even if it was to sign the guest book or to send us a quick email or card to check in on us. Or even the most powerful prayer. We really are feeling them. I don't know how else we're making it through these days sometimes. We draw strength from the outpouring of love and encouragement you all have shown!

Well, I guess this update took a bit of a turn somewhere. I suppose I get a bit sentimental and ramble on in the wee hours of the morning. That's probably why I'm still up. Better to be sitting here doing something half constructive than to be lying in bed typing imaginary emails that I never remember in the morning anyway.

BTW... if anyone know of a device that can transfer thoughts into emails... drop me a line to let me know. It sure would make life easier for me... and a few others I can think of too kenyit

Tomorrow... maybe I'll get on here and post a couple facts. Since it's the half way mark, I was going to give some material that will be tested on 1 year and 7 months from now...

Just a sneak preview:

Can anyone estimate how many pills Josh has had to take in the last year and a half?

or how many spinals he's had to endure?

I'm going to add it all up. I'll post soon. Come Josh's OT party, believe you me - there will be a test

With all our love and appreciation
~ The Fromknecht Family

Jon & Marian,
Kaitlynn, Halie, Kennidy,
Joshua and Nathan