Abby's Broviac all Patched up

Abby's Broviac all Patched up
Originally uploaded by fireater.

Just a quick note to tell you that Abby's Broviac is all fixed up. It did take 5 hours to find the right size tube patch kit and then they had to splint it to keep it straight... get this using Starbucks stir sticks that a nurse had. Wow, Starbucks is everywhere huh!... Anyway, we are off to take a little drive in the mountians now that we've removed Abby's splint:). It will be fun to get out!



Bieeeeee

Abby's going to have a little "Bro"

Abby's going to have a little "Bro"
Originally uploaded by fireater.

Ya really... Wait, you didn't all think I was talking about a little bro?! No a little, or should I say little-er "Bro"... A Broviac. Now that I got you heart racing with the title of this blog I'll let you in on what's going on. (I've wanted to post that title for such a long time! hehe.)

Anyway, Tiffany is down in Denver at the ER with Abby because she cut her Broviac, her in-line catheter with a pair of scissors. Yup, we just couldn't stand being away I guess, waiting for that extra week you know. I think Tiffany just wanted to go down there subconsciously or something.

So, basically, Tiffany was cutting the tape off Abby's little bro...viac and got distracted by Anna and Abby and whoops... cut the tube. Just barely caught the side of it, but it was enough to let blood out and other bad stuff in so, down to Denver she went. The doctor who put it in will repair it pretty soon, probably getting started by now. I think to fix it they just will shorten it past the cut and then put a new end cap on and hopefully that is it. Hopefully it isn't too short since Abby has to have it in for the next 2 months. That is what they would like to do at least, keep it in until DI is over but if she gets another blood infection they will have to take it out and then Abby will have to get needle sticks for all of her chemo appointments. So, pray that she doesn't get any blood infections and that the shorting of this Broviac Catheter is no big deal.

I'll give you all more news if there is any... hopefully nothing news worthy.

Didn't pass for DI

Didn't pass for DI
Originally uploaded by fireater.

So we thought Abby's immunity counts were good, her ANC, but we thought wrong. We even had multiple get togethers with lots of kids and our "side dish and sanitizer" party thinking that she would be above 1000 or so at least.... Nope..... 200 today. That's Neutropenic, fever alert status and all... Who would have thought so. Oh well.



So, she needed to be at 500 ANC today to start the next phase, Delayed Intensification, DI... We figured she'd pass with flying colors... but nope, 200... crazy. So, we wait a week, or maybe just till Friday, we'll have to talk a bit more with them.



One one side of the coin, I really just want to get going on this phase so that we can be done sooner, and so that I don't have to go through all the potential scenarios in my head any more... Basically tired of the waiting game. But on the other hand, we get our spunky little girl, motor mouth and all, for another whole week. And we don't have to share her with the side-effects of the chemo drugs for another week!



So, probably a really good thing in a way. She won't be finishing up until September at this rate but hey, who am I to say that this isn't the best thing for her? I guess I'll just have to try to enjoy it and not be anxious about what is to come...



Carpe Diem!

Still chemo free

Still chemo free
Originally uploaded by fireater.

Hey all,

I made a quick webpage of the Relay for Life event for everyone to check out. That last picture, though I love it, makes me cry quite often when I see it. I mean there's no escaping it, she is a cancer patient/survivor with a medal, a shirt and all that goes with it... just hits home I guess. BTW, if anyone wants one of these pictures just let me know and I'll post them on snapfish as well.

She is still doing great in this window of rest that she has. She's running, "hoping on Pop" with reckless abandonment (I thought I was in the WWF last night as she through herself from the bed in a cannon ball style plunge onto my stomach! :)), and in all she is have a great time with lots of energy. That is fun to see. If you look at the pictures above you notice that she is in a giant box of Styrofoam, thanks Kimberly! She loves the box as much as the present, She played in this box for seriously about an hour and a half! Giggling the whole time!

Please be praying for Delayed intensifications... 5 days till it starts, and is going to be rough. This fact was brought back to the forefront of my mind as I was talking to Nikki, a leukemia patient at Relay for Life (black hair in the picture above) and she was telling me about her treatment, how most of her joints died during one of the chemo rounds and how she has had to have a couple joint replacements from donors, just like you would get for any other organ transplant. Also how her body couldn't metabolize 6-MP and other crazy stuff. Just makes me very alert to the fact that the coming road may be more difficult than it has been. It also makes me extremely thankful for how great Abby is doing... so, please ramp up the praying and thoughts for Abby.


Oh yes, more to come...

Relay fun

Relay fun
Originally uploaded by fireater.

Well, the Relay for Life event was awesome to say the least! Abby just loved it and wanted to go back, and back, and back... so we did.

We ended up going around 5:30pm on Friday night and staying until about 9:30pm. During that time Abby did her survivor lap with all the people who had or have had cancer. She walked the whole 1/4 mile and only said she was tired at the very end. Abby was interviewed by the radio station that was there after her lap and she did really good with her high pitched little voice. Around 7pm they had dinner for the survivors, it was spaghetti and I once again, Abby ate a ton of it! That was a big deal too because she hadn't been eating for the last 2 days and I was starting to get a little concerned.

We ended up meeting a ton of people a the event and Abby had this weird connection to the other cancer patients/survivors. She would just walk up to almost anyone in a purple shirt and give them a hug or talk to them. The coordinator of the Fort Collins event Dianne got Abby a little bear, a necklace that lights up, and fell in love with Abby. Dianne walked a lap around the track carrying Abby the whole way! We also ran into a girl who is done with Leukemia treatment, Nikki, that we had first met at Dr. Smith's office in Denver. We talked a lot and I got to meet a bunch of team members that she was on a team with, team Drahota, a construction company team. Abby loved all of these people too and loved playing this little game that they had made to get people to help donate money to the American Cancer Society involving spinning a wheel and then winning a seed packet. If you got 3 of the same seed packets you also won a prize. Abby didn't quite understand the concept and would just go over to the wheel, spin it, and then go get a seed packet... by the end of my talk with Nikki, Abby had a pile of seed packets as tall as her!... Ok, you got me, not 3 feet high from the ground... she was piling them on a chair, but still they were as tall as her when pile up on the chair, and it sounds better when you say a seed pile as tall has her! Anyway...

We finally went home after they lit the luminaries, Abby had 2 in honor of her, Abby lit her own with all of our new friends watching and helping her break the glow sticks. Pretty crazy to see all of those lit up bags all around the 1/4 mile track, all spaced apart by no more than a foot. Some bags in memory, some bags in honor, and some as a sign of hope.

We signed up with team Drahota to walk a lap since they were short 1 person, she had lost the fight to cancer 2 weeks ago. We took her place from the 5am-6am lap and clocked 1.75 miles with Abby in the stroller all wrapped up in a big blanket. That was the bubble blowing lap and we had a great time! They do different things like lap poker, and bubbles through out the night to help the time go by. I took Abby for a long drive to help her sleep until breakfast and then she came back... again, and ate about 6 pancakes! Man that girl can eat!

Well, that was a night all right, a fun filled emotional, and hopeful night. Filled with meeting new friends, connecting with people on a way deeper than usual level and giving and receiving a lot of love. Pretty weird to see someone in a purple shirt, strike up a conversation, hear their story and relate to them in a way that others can't. They know the pain, the angst, the good and the bad days of treatment. They know of hope and they really know how to suck the marrow out of every day. Want to have a good party?... go hang out with cancer survivors and their friends for a night and you'll get to see who knows how to live life in a real, deep, and fun way!



Next year... we'll do a team... who's with me!?

Relay for Life

Relay for Life
Originally uploaded by fireater.

Since Abby has been doing so good lately, we decided to brave the crowds and participate in the Fort Collins Relay for Life. This event is set up by the American Cancer Society and they have local events set up all over.

Abby has been invited walk the "survivor lap", basically anyone who has had or is currently being treated for cancer. After the opening ceremonies they have kids skits and other activities while the teams walk on the track, they walk till 12pm the next day in relay style! Yikes! At 9pm they light the Luminaries, each candle bag has a name of a person that fought cancer, in memory or honor of them. I think it will be a powerful experience to say the least.

If anyone wants to come and cheer Abby on in the opening lap or stay for the candle lightings we'll be there from 6pm-9pm on Friday night, June 10th.



Relay for Life

Fort Collins High School Track

June 10th 6pm- June 11th 12pm



So as you can see, every thing is going good, Abby is enjoying this restful phase and so are we! More to come later.

My normal little girl

My normal little girl
Originally uploaded by fireater.

Well the last of the High Dose Methotrexate, HDM, infusions are done and it went really well. No major side effects this time. The normal chemo brain fog for 24 hours but no fuzzy bunnies or visions of Trogdor the burninator or anything like that... and yes, that is a very good thing indeed.



Since she's been so relatively normal, we've been really pushing the boundaries and venturing out of our little germ-free world. Yesterday we went to JAX, an outdoor store here in town, to buy her a butterfly net. The store was incredibly crowded and she was touching every single net and other toy in the kids section but I wasn't too worried. That was really nice not to be worried so much.



Abby's been running more, playing better, and talking constantly in her little mouse pitched sing songy voice... I'll have to find a way to put a clip of it on the web for you all to hear, pretty cute. It's great to see her like this again and at the same time it is a bitter sweet feeling since she is on the eve of DI. We really are enjoying this phase since Abby is so much more like herself, but at the same time we don't want it to end. I find myself thinking back to that first month and all that it entailed. Grumpy Abby demanding food and then not wanting to eat it, then trying to eat it and crying. And then 5 minutes later she eating 4 adult sized portions of pasta. Little Abby's cheeks getting all puffy and hair falling out every time you run your fingers through it. The fact that she couldn't walk and would just shuffle around on her knees. But most of the time she just sat on the couch, that tiny little girl of mine, looking so small in her little semi permanent place at end of the couch. Ya, I don't miss those days.



To be honest visions of those days are still just below the surface a lot of the time. I don't think that I can express to you how much I don't want to go back to those bleak days. Yes, you got me, this strong man is a bit scared. Scared of what is to come in the next round. I'll have a little education day about the next round soon so that you can be scared with me... no, don't be scared, I'll try not to be either. I really do have a lot of hope that it will be different than last time. We know a bit more of what it will be like and that is a good thing. We have a bigger place with a yard and it is the summer, how can anything be too bad in the summer!? We have a small cache of bunny mac and cheese, so we should be set.



I'll try to scan in the "road map" for DI soon so you all can be on track with us.

No hallucinations yet!

Just a quick shout out to let you know that Abby is doing pretty good with
this HDM infusion. She was only up twice last night and is only a little
spacey today.

Abby's favorite nurse at CHOA, Joanne, gave her a smaller, more concentrated
Methotrexate bag yesterday and it was much easier for her to carry around!
Ya! We finally go this down on the last time! We also had the forethought
to ask for the two 1800ml bags of fluids to be split up into smaller bags!
We're getting smart huh!? From this afternoon on, she will only have to
carry around some small 500ml bags of fluid till Friday morning.

We also found out that Abby will not have to start DI until June 21st! So,
if everything goes right with this infusion, we won't have to go down to
Denver again for 3 whole weeks! Whooopeeee! :-) Keep praying for DI, we're
all gonna need it!

Breakfast before Round 4

Hey all~

Above is the picture of Abby and some of the Team N' Training participants and the mentor Tyler. We all went to breakfast on Sunday morning after their run and it was a lot of fun! These folks have been training since the beginning of March or longer for some marathons and other races. They also have been raising money for the Leukemia and Lymphoma Society as part of the race. This is a great program and Abby was an Honoree for this last race training schedule. It has been great to get to know some of the participants and if you are reading this post as a participant. Good Luck and Good Job! Thanks for all that you have done to help families like mine that have been affected by blood cancers.

Hopefully next time that Abby is an Honoree she will be able to come to more events and such since she will be in maintenance. but she's not there yet,just a few more months. 1 more High Dose Methotrexate(HDM) (tomorrow) and then on to Delayed Intensification! Yikes!

So, looks like we will start the HDM tomorrow and then a week of rest and then.. DI. Yes we are a bit nervous about it all but also very hopeful and glad that it landed in the summer when my schedule is much more flexible. I'll try to scan in the "road map" for the next treatment, DI, soon, I think it will help you all to see what goes on and what days you can all be praying for Abby's health and side-effects.

Well, that's all. Thanks again TNT participants, Mentors, and Coaches!

Restful?!?

So. ya. that's me.

Abby's doing good though, actually a little hyper sometimes, and a little
grumpy still at times. She hasn't been sleeping very well, like last night
she was up about every hour. She still has her low-grade fever, bouncing
around between 99 and 100. She is off the Vanco now and on an antibiotic
that we only have to give her once a day so that is much nicer. The limp is
mostly gone, and we think the new fever is probably from a cold, Anna has a
cold too.

Other than that, we start the last Methotrexate infusion on Tuesday thru
Friday. And then on to DI! Yikes, Please start praying for that one, early
June- mid August. 21 days of steroid drug therapy, weekly doses of
Doxorubicin, more Vincristine, PEG shots, Arac, 6-MP, Cytabarbatine, spinal
taps with Methotrexate. And a few more that I can't remember.. So, please
pray, 60%-70% of kids get admitted during this DI phase, pray that she is in
the other 30-40% that gets to stay home. Pray that the side-effects are
minimal to none, and that she maintains her health the in the best possible
way.

Thanks!

Abby's still truckin'

Just a quick note to say, "It's HOT in Colorado!" Yes, just 2 weeks ago it was snowing and yes it is suppose to be spring here but once again leave it to Colorado to be different... The last 2 days it has been in the low to mid 90's... So... we broke out the pool! Abby loved it, she also loved not having to be attached to the IV fluids bag anymore too.

Quick update: Abby is on Vancomyacin, the strong antibiotic for her blood infection. She still is limping a bit so we'll have to get that checked next week. She is also on a medicine to help negate the neurological affects of High Dose Methotrexate (HDM). She only has one more HDM to go, a week from Tuesday. She what else... Eye Doctor appointment on Monday, and a CBC at CHOA. Other than that I think we are just going to catch up on our sleep, as much as the administration of Vancomyacin allows for, every 8 hours and a 2 hour infusion rate.

Abby's back to herself again mostly, and all the dwarfs have gone away for now, thanks for your prayers and comments. We love you all!

Did I say that this was going to be easy?

I seem to remember saying that these High Dose Methotrexate infusions weren't really that bad... I take that back. This one's been pretty rough.

Abby's gone from sleepy to dopey and is now in the grumpy stage... I'm just plain sleepy. Let me explain.

Tuesday the Methotrexate infusion started in Denver, routine as always, good spinal tap, easy infusion and then back home. But from that night till now it's been anything but routine. Here's the general schedule of recent events:

Tuesday (sleepy)
12pm --- Methotrexate infusion, they start to put it all in and hook her up to the 2-liter bag for the next 24 hours.
3pm --- Home
6pm --- Methotrexate starts to be released by her system (i.e. Peeing)
8pm --- More Methotrexate coming out
10pm -- Metho out
12pm Metho out

Wednesday (Dopey)
2am yup... still coming
4am... I can't remember but I think I took her anyway
5:30am "where's this all come from?!"
9-10am.. Hallucinations of me outside her window and other funny visions
11am-Going back down to Denver
12pm-- Shivers/shakes at CHOA
4:30 leaves Choa
6pm, 8pm,10pm,12am.... "how big is your bladder girl?"

Thursday (Grumpy)
6am... Leucovorin rescue drug given... and yes... more pee:)
8am.. she doesn't feel good, heel pain, limps when walking.
10am.. 100 degree fever... going back down to Denver
12:30pm.. Blood infection found (must be a big one, usually they don't find a positive culture for several hours)
2pm.. Back on Vancomyacin (the only antibiotic left that can kill all bacterial infections)
3pm----> ? Who knows, They are still in Denver.

So as you can see, anything but normal. Currently the hallucinations are gone, the heel pain is still there but it may just have been a splinter or maybe the Vincristine shot from Tuesday, sometimes causes leg pain. She'll be on Vanco until they can run some more tests on the infection and see what else it will respond to. Once they find what it will respond to then they will switch her over to that one. The Broviac is most likely the source of the infections and since she has had three, they may take it out. Hopefully she can make it through the summer with this one in, through Delayed Intensification, DI. If she can make it through DI then they will take it out then and she will only have to get stuck with needles once a month or so, or we could have them put an under the skin line in, called a medo-port, we'll see.

So that's the update. Time to go get Anna, maybe I can't take a nap too. :)

This is Abby during the High Dose Methotrexate

Yep, that's her. Well, without the beard, less hair, no hat, smaller nose
and no cartoon styled cloths. or shoes. but the expression is the same..
Well mostly the same. Anyway, Abby is doing OK. Carrying around 2 liters
of fluids with you can't be fun nor getting yet another spinal tap I would
imagine. Yet even with all of that, she is still remarkably chipper.

It is fast approaching 10pm and I probably should have gone to bed awhile
ago seeing that it may be a long night of used Methotrexate fluid depositing
for the ole Abby, but then again I did have a triple shot of coffee at 3pm
so why should I complain. well actually if you must know, I didn't even have
that triple shot this afternoon. It sounded awfully good but I didn't have
the energy to go get one. Those Denver days tend to wipe you out. I wonder
if people that live in Denver are always wiped out? Hmmm.

Anyway, the spinal tap when well, only a little "owe" and then it was all
done. They always comment about how well she does with these taps compared
to other kids. I'm glad that she is so cooperative for them and me. They
don't even give her Vers-ed anymore because it was making her incredibly
weepy and not real fun to be around when it started to wear off. So the
only thing she gets is a topical pain killer and a little Fentanyl that
wears off pretty quickly after the tap. The infusion was fine, pretty
routine if it can be called so.

Her ANC is down to 650 but Dr. Smith wasn't too concerned. He was wearing a
Sponge Bob Square Pants tie. should I be concerned? :-) No, he even said
that Abby could come to Frontier's Graduation if we wanted, (Frontier
Academy is the High School I work at for those of you that don't know) so if
she is feeling up to it then I think we just may!

Well, since I didn't have that coffee I'm going to go to bed. I probably be
woken up in the next hour and then every couple after that but that's par
for the course. Part of me just wants to pull an all nighter and blog all
night long. But you wouldn't want to read that long of a post so off to bed
I go!

I'll probably look more like my little dwarf friend by the morning than Abby
will : )

2 down 2 to go... Methotrexate starts again

Well here we are again, on the eve of another infusion.

I'm not too nervous about the whole thing this time, either because I
haven't had much time to think about it with school winding down and all of
our visitors or maybe I just really am getting to be OK with the whole
thing. maybe.

This whole infusion process really hasn't been too bad. Abby's counts are
up, somewhere near a normal kid for immunity last week and 1178 ANC today.
Really good like I said. She has been running more now, not as whining and
overall in good spirits. She even had a runny nose and cold last week and
still had enough energy to run and round in the yard with Anna! It really
lightens things up around here, seeing her being able to run around and be
more of a normal little girl and all. I wish she could have come to my
graduation ceremony, just finished my Masters, but we didn't want to chance
it so she stayed with a baby sitter and once again did great!

Anyway, like I said she is doing great. Tomorrow we will go back down to
Denver to CHOA and see Joanne and Dr. Smith. Abby loves seeing Joanne.
Even though she will give her a spinal tap tomorrow and hook her up to the
Methotrexate infusion and also give her Vincristine, Abby still loves to see
the nurses and doctors and even pretends to be them when we are at home.
I've plenty of my own pretend spinal taps and other procedures at home when
Abby pretends to be Joanne. Pretty cute actually. if you've never been
given a spinal tap by your 3 year old, I'd highly recommend it. :-)

Well that's all for now, good night.

Proud owner of a Chemo Spill Kit

Look! We are now the proud owners of a Chemo Spill Kit! Yippee!

You know I never thought that I would type the words "chemo spill kit" in the same sentence with the name of any of my family members but, oh yes, a historic day it is. And yes we, or I should say Abby is the owner of a lovely chemo spill kit complete with gown, gloves, bio-hazard bags and the like. You know at this point it just makes me laugh, and no it not a hysterical laugh, just more of a "this is our new life" kind of laugh.

Because of this kit and it's implications I decided to review everything deemed out of the ordinary that has happened to us since December...

Abby was DX with Leukemia, Weekly trips to Denver, 4 stays at the hospital, 5 surgeries/bone aspirations, 8-10 blood transfusions, weekly or more trips to CHOA, 1 retinal hemorrhage, patching and new glasses, bought a house and moved, finished my CSU course work and survey... Oh , also in the last month or 2 I have cut my finger/thumb on a saw, sprained my ankle, broke a mercury thermometer which got on my gold ring and made an amalgamate of it, 2 high dose Methotrexate infusions (both times she unplugged herself) and have had multiple appointments to keep us all fixed up.

That seemed like a bit when I put it all in short span so I decided to take the online stress test to see how stressed our family might/should be. I found one online and here are the results.

44 Change in family member's health
31 Mortgage or loan over $30,000
26 Starting or finishing school (CSU and I'm a teacher too... does that count as 2?)
23 Personal injury
20 Change in residence
19 Change in recreational habits
19 Change in church activities
18 Change in social activities
16 Change in sleeping habits

My total score was 197, I bet it is about the same for Tiffany and Abby... And Anna could probably care less. Her stress scale would have things like having to wait for her milk, being corrected, how many times she had to share and the like.

Maybe we should all go around and share our "numbers"... "Hi I'm Bill and I'm an 86 this week." "Nice to meet you Bill, my house just burned down, I'm and 202." Maybe that would be too weird.

Actually, things are going pretty good. Abby is doing OK, she's been a sick from a cold and the infusion probably didn't help much but she is in good spirits. Last night Tiffany took Abby down to Denver to the hospital because she might have an infection in her Broviac so they wanted to take a culture, look at her and start her on some antibiotics. Tiffany got back late last night after they started Abby on some antibiotics and did the culture.


More later

Ramping up for Methotrexate #2

Here is a picture of Abby with her Methotrexate infusion bag. I don't know why they have to color it this mountian dew/sci-fi green yellow color but they do. I asked our nurse Jo Ann about it an she said they are all dyed different colors. I also asked her if any were colored blue or purple and she looked me and seriously said, "there's blue... but don't get the blue one, you don't want her to be getting the blue one." Kinda scary don't you think? I mean Neo took the blue one in the Matrix and he turned out fine... Hmmm... Well, pray that I don't have to blog about the "blue one" any time during this process.

This last week has been so much better than the first week of the High Dose Methotrexate (HDM). Abby hasn't had to wear a backpack full or Methotrexate nor any fluid... 2-liters, that is about how much it is when it is full so 3pm - bedtime probably feels like she is walking on Mars or wearing a heavy rocket pack on her back. The hardwood floors make it a bit better as she can slide it around behind her buy pulling the arm strap of the back pack.

I can't say that I'm excited for this every other week HDM treatment but maybe this is exactly the treatment that will keep the cancer from returning by getting those last subborn cells. We also are dreading the Delayed Intesifycation (DI) phase after this but at least it is in the summer. I'm think we are going to get a nice big hammock to hang somewhere in the shade so that when she isn't feeling up to walking around we can just go relax in the back yard. She also seems to like to garden, or at least dig in the dirt, so maybe that will take her mind off of the DI side-effects this summer too. Who knows, one day at a time is how we take it around here, and since she is doing so good these days we're going to party while we can!

Going to play with my girls... more to come soon.

Just Plain Thankful!

Once again I sit down with no idea what to write but also with a longing to
convey my thoughts of this journey with you all. In short, Abby has been
doing really good, she hasn't been sleeping well for a few weeks, but last
night she did great and didn't wake at all. Other than the sleep, or lack
there of, and the low counts, Abby has been great!

I've been reading through the Leukemia and Lymphoma Society's bulletin board
of other parents with children with Leukemia and some of the side-effects
and hospital stays that other kids have had to go through are crazy and sad
to say the least. It's not to say that Abby won't be up there with a
similar story in the months to come but at least right now she is feeling
pretty good and I am soooo thankful!

We've just been feeling so thankful and blessed lately. Thankful for Abby's
condition in the midst of her treatment, I mean you know, she still has her
hair and acts/looks pretty normal. Thankful for all of our friends, family
and the support that they have brought us. You all moved us into our new
house, after remodeling it and painting EVERY room! Meals, so many meals,
people keep knocking on our door and dropping off food at the perfect time,
we even have a ton in the freezer just encase! You know, after coming back
from Denver from a full day of chemo for Abby and who has the energy to make
dinner? I sure don't. You all have saved my family from becoming
drive-thru junkies! Thank you! The checks, the fundraisers (that's another
blog entry), the prayers, (especially the prayers), and the tremendous
amounts of love and encouragement that you all have poured out in so many
ways from cards and packages to helping us move; people from town and from
far away have done so much. Since you've all done so much, a simple "thank
you" doesn't really seem to do it justice. but "Thank You!" Thank you.
Thank you. Thank you! We are humbled by your love and support.

Thank you all! More updates later this week as she moves on into Interim
Maintenance.

landslide of sorts

From 4/11/05 (we don't have the Internet at home anymore:-()

I have so many things that I want to write about that it seems a bit
daunting... I guess I'll just write in my random style and see what comes
out.

Right now I'm listening to "Landslide" by Fleetwood Mac. I don't think I
can vocalize why this song strikes me so much, it definitely isn't Stevie
Knicks voice, but it does. Old home video style footage that was never
taken of Abby plays in my head as the song moves on.

"I took my love and I took it down,

I climbed a mountain and I turned around,

and I saw my reflection in the snow covered hills

and the landslide brought me down.

Oh mirror in the sky what is love

can the child within my heart rise above,

can I sail through the changin' ocean tides,

can I handle the seasons of my life... mm mmm I don't know...

We'll I've been afraid of changing

cuz I built my life around you,

but times makes you bolder,

children get older and I'm getting older too."

Just a song that plays lots of video in my head when I hear it. So many fun
times that we are and have had with our little girls... yet I am afraid of
changing, and often those "ocean tides" have quite the undertow. Lately
it's been a lot better, so good that I sometimes forget that she is sick.
Almost like a day at the beach, the thing that is hard to explain is that I
used to just send her down to the metaphoric waves and I sat back; and while
still watching her, I enjoyed the sun. Now, even though it may look similar
from the outside, it is a lot different. Now I tend to still sit back and
watch her play in the proverbial waves of life, but instead of sitting back
to enjoy the sun, I'm sitting on the shore looking out past Abby to see if
or when the big set will break over her. When the Mega-Tsunami, as my
brother-in-law says, will come crashing to shore. Actually, I don't even
think that it is the Mega-Tsunamis that I'm really concerned with, it is
more just those waves sneak up to shore, looking just like a small wave yet
cresting out to a 10-footer when it breaks.

So that's me, and probably Tiffany to a large degree too. I think this
month it is really setting in that our daughter isn't just sick with a long
cold of sorts, but instead has a disease that has some real side-effects. I
know it may sound silly that it takes us so long to really internalize it
but for some reason it has.

And even though it has been a draining journey, we are very hopeful. The
treatment waves have been relatively small, and the waves of support from
all of you have been oh so large and constant. Thank you all so much for
being part of this journey with us, I don't know how people would do it with
out friends and family like all of you! We sure do appreciate all of you!
Thanks again!

Abby's High Dose Methotrexate Experiance... and ours

So I was going to post about how great this whole high-dose Methotrexate
experience has been, how the trips to Denver on Monday, Tuesday and
Wednesday were and are going fairly well and how we had fun visiting
downtown Denver, seeing the big building and all between appointments. and I
still will tell you all about that but it seems a bit overshadowed by the
fact that Abby woke up soaked on one side in Methotrexate (from coming
unplugged) and is now back down on her way to CHOA to sort it all out.

Now, don't freak out on me or anything, it's not as bad as it sounds. Yes,
Methotrexate in its liquid form does look a lot like an X-Files style sci-fi
experiment fluid with it's fluorescent hue and yellow-green appearance. and
yes it is also true that she came home with a backpack full of a liter and a
half of the stuff to get infused into her via her Broviac over 24 hrs. And
oh yes it also is true that Methotrexate, being a chemo agent is not the
nicest thing to wake up into a pool of, but lets be honest, they're
saturating her body with the stuff on the inside so a little on the outside
isn't that big of a deal.

Let me start with a quick synopsis of the week to bring us all back up to
speed

Abby's counts were up to 500 ANC, 1500 Total white count, and 8.8 on the
hemoglobin front, platelet's are great somewhere around 140,000. With those
counts on Monday she qualified to start this next phase, IM. She also went
to the eye doctor, and got some really cool purple glasses to wear for a few
months but that is a different post. you can be praying that she won't have
to have surgery this summer and that her eyes will straighten out by
themselves before that has to be considered. anyway, I took her back Tuesday
morning for a spinal tap of Methotrexate, a IV push of Vincristine, and to
start the high-dose Methotrexate treatment. They hydrated her all morning,
got her urine up to a certain Ph and then started the Methotrexate pump.
This pump is the one that continuously infuses the Methotrexate into her
Broviac tube for 24 hours. They put the stuff in a big bag, and then put
the pump and the bag of fluid (1.5 liters) into a back pack the size of
Abby. So that is the scoop.

Now this backpack was way too huge and watching her try to walk around with
it, as comical as it could have been, was just too heartbreaking for me. So,
in my MacGyver style I mounted all of her mobile infusion kit, into a
strawberry shortcake backpack for her mobile roaming. Now imagine for a
moment being 28 pounds and trying to carry a 2-liter bottle of soda around
on your back. ya, not fun but it worked ok for the evening. I've got some
pictures; I'll have to post them for you.

Anyway, having all the fluid pumped into you makes a little girl want to
pee, and did she ever! I stopped counting after 1:30am, but we were up to 6
by then. So yes, once again, coffee is my friend. Trying to move all that
equipment and my sleepy little girl is a hard thing when you are well rested
and even harder by 5:30 in the morning with little sleep. That was the last
time I took her before I left to work and she was still dry then, so,
sometime between 5:30 and 7:30 this morning she came unplugged; it could
have been on that last potty break but who really knows. Tiffany got her up
and she was soaked on one side with Methotrexate as well as her bed,
actually the guest bed. Anyone still want to sleep in our guestroom. don't
worry about the glowing mattress :-) Just kiddin'. It only soaked the
sleeping bag a bit.

Tiffany called the on-call doc and the nurse and they told her what to do,
bath for Abby, wash the linens, and drive her down to Denver to fill the bag
up with what had been lost. So that's where she is going and speaking of
going, I have to go teach. Rest assured though, everything is fine, this
drug is relatively safe, and we have great doctors seeing us through this.
on the nerve front, well, we're a bit tired and worn down, probably stressed
too but we know we are being prayed for and are in good hands at CHOA.

Bye now!

No High does Mexth till next week

So, I had it all planned out, even highlighted on my lesson planning book. I was about to get all my subs lined up for the next few weeks and then it changed on me. Oh well, I was just so excited that I was actually all planned for it.

Tiffany took Abby in for a CBC (complete blood count) at the fort collins hospital lab yesterday to see what her counts were. Last week they were at 700 ANC (immununity) which was great, we expected it to be even higher but it wasn't. ANC of 48! Total white blood cells at 600, hemoglobin at 7.2 and everything else was fine. I don't know why it dropped so much, maybe she was fighting off a cold, she did have a little something. Anyway, we won't start the next phase, regardless of what my planner says, until next week on Tuesday.

We will also have to watch her for any fever since her blood counts are so low and she is at risk of infections. Other than that things are going really good. She had fun playing in the spring snow this weekend and getting out in the sun the day before... got to love Colorado weather!

See ya, more and more to come as my typing finger gets better:)