The grumpy pill

The grumpy pill
Originally uploaded by fireater.

There is a point in every bloggers life when they have to figure out how much to share in this open journal of sorts. That is probably one of the main reasons why I haven't posted since DI started, I just don't really know what to share. Do I share that every morning and night now as I grind up this little pill and cover it with chocolate syrup to disguise it's taste that I feel like I'm poisoning my daughter. Do I share the angst and frustration that really just comes from a deep sadness of having to watch my little girl go from her playful little self to a grumpy, tired, whiney little girl who just wants to zone in front of the TV and how it happened virtually overnight? Do I share the resurfacing fears of losing my daughter not to the cancer but to the side-effects of these drugs that are suppose to help her? Aren't meds. suppose to make you feel better?

So I do know what to share really, it's just I don't know how to share it. I think what's up above is a pretty good start. I know that I need to share these thoughts and these feelings with you all because you all are part of this journey too. God created us for community, to share in the tough times and the fun times. I hope you feel closer to my family and Abby by now and that you really will know what is truly going on when you read a post here. I know that we are not alone in this and I thank you for all of your prayer, support, encouragement, and comments. Keep the comments coming please, it's nice to hear from you all.

So as you can see Abby is doing ok. She went from her smiley chipper self to a grumpy, crying shell of herself over night. When we awoke on Wednesday morning we had a different little girl living with us. I don't know if you can really relate but Tiffany says that it seems like Abby's having a 10-fold killer PMS type week. Just out of control and inconsolable one hour and then seemingly happy and ready to go swing in the back yard the next minute. Couple that with the fact that she had a spinal tap on Tuesday and another chemo drug that makes people very nauseous for days, and one more that makes Abby very constipated, oh ya, and the Decadron that makes them hungry with mood swings and yes... what we have here is a very tired, grumpy, crying one minute/smiling the next, hungry, nauseous, sore, dizzy little girl who doesn't understand why she feels like this and the only comfort that she seems to be able to find is by smelling her blanket and sucking on her fingers.... constantly. On that note, pray that she doesn't get raw sores on her fingers, her middle 2, because she has them in her mouth when ever she is awake lately.

She also saying that she thinks that she needs to go to the Hospital a lot lately since she doesn't feel good. Breaks my heart really. We actually did go down to the hospital yesterday, she was excited for a minute until I put the Emla cream on her things. This is a numbing cream, topical, that they have you put on before they do spinal taps or shots, yesterday was the 2 shot day (see the roadmap for PEG, day 4). I put it on right as we where about to pull out of the driveway and she did NOT want that on... She is pretty smart now and can see the signs of what is going to come when we put Emla on. She cried for about a half an hour... all I could do is tell her that it would help and keep driving. She did ok with the shots but must have been pretty sore on the way home because she just sat there and looked out the window, didn't want to play or talk, she didn't even want to get a new toy from CHOA (they give the kids a toy especially when they get a painful procedure).



Well, the girls are up now so off I go... I've got to go crush up that nasty little pill, drowned it in syrup and give it to my little girl for another day of fun. :)

Getting on the "Road" of DI

Getting on the "Road" of DI
Originally uploaded by fireater.

Merging with traffic on a freeway always has been a hard thing for me to do. You're driving nice and slow, enjoying the scenery and all, and then you hit the on ramp. You hit the gas and faster and faster you go, accelerating towards a mass of fast moving cars at this crazy angle of attack, hopefully finding a spot at the end to fit your car into amongst them.

That's kind of how I feel to day. I'd rather take a country drive, a country drive on Sunday even to really slow things down .in a tractor. But nay, on to Denver we go, roadmap in hand, off to start DI.

So, yes the roadmap that you see in the image above is not your typical roadmap, but for us it is becoming more typical. Every phase of this treatment has its own "roadmap" to help us know what's coming up. This roadmap is a complete protocol of what Abby will be getting, and when, for all of the Delayed Intensification time frame, 59 days in all. As you can see from the top all patients must qualify for this phase with a certain ANC (immunity) count of 750 and a certain level of platelets. Yesterday Abby finally qualified since her ANC was 1600 but last week she was only at 200, that's why she couldn't start.

Well we've got to get going. down to Denver to get all of day 1's Meds. I can feel the car accelerating already:-).

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:)

Concern for the new phase

I'm sick right now and probably should be in bed but I can't go to bed mad, so I type. I get more emotional when I don't feel good so that's part of it, but this is still a stressful gig that we are in, this Leukemia thing, and maybe I've just been hiding from the stress of life. Maybe I'm not so mad about our situation but instead, all the things that I have to deal with because of it, pretty selfish really, but that's the truth. Basically, I really don't want to start this next treatment with Abby. Once again, I'd just like to be done. She's done so well on this last phase and I just want it to last. I want to continue to live in my world of pseudo control and pretend that all is well. Part of it too is that I don't feel like I have anymore emotional energy to deal with more of the unknown. And that is what the next phase is for me, the unknown.

The phase that Abby starts this coming Tuesday is called Interim Maintenance, a fairly restful time for the body prior to the final big push called Delayed Intensification, DI. During DI they open up on her again with both barrels in hopes of eradicating any remaining stubborn cancer cells. That starts in 2 months, start praying now for that one. Anyway, this phase that we are about to enter is the experimental part of the study that we are on. The thing that they will be studying with Abby's group is if High-Dose Methotrexate will attain a higher cure rate for kids with high-risk Pre-B ALL. This method has had good results with T-cell ALL so they want to see how it does with other types of ALL. This is a good study and I'm glad to be on it but also concerned for Abby.

You see, one of the rare side-effects of high-dose Methotrexate is short term and long term learning disabilities. As a teacher that is hard for me to swallow. I want the best for Abby, and education is important to me. Thus my fear of my daughter having a disability because of a treatment that she gets. Now the standard treatment isn't much different, they still give Methotrexate, just a lower dose. Some of the research shows that learning disabilities were from people that received extremely high doses like 33g per meter squared. Abby's high does will only be 3g per meter squared, so really not as high. Also, most of the people that have gotten high-dose methx, even as high as 33g have done just fine.

If I wanted to, I could pull her from the study because of my concerns, but that seems to lay a big burden on my shoulders, a burden of responsibility for how it all plays out. I mean who am I to say, that this is good or bad. For all I know, this may be the only thing that will truly cure her, I'll never know. So, she got randomized to this arm of the study, and we are going to stick with it, anxieties and all. Just another uncontrollable factor in thing called Leukemia treatment.

Please be praying for this next phase. For no side-effects and for peace. Thanks!

Love Wins

Just was listening to a Christmas sermon by Rob Bell, ya I'm a bit behind, talking about who Mary was when the angel told her that she had the savior in her womb. She wasn't this little frail girl but more a woman that knew that that a new kingdom would be coming and that the oppression of Caesar and Herod and such would go away soon. Not by brute force, not by fear, or even by sheer numbers but by the love that that little baby would bring to this world.

I don't know why this all struck me so much but it did. Maybe it was because Mary knew how to trust God in the midst of hard circumstances. I really desire that more, I really desire having that kind of trust in the Lord. I also resonate a bit with Mary, I don't know why I always seems to resonate with these females in the Bible but I do. I think I know a little bit what it may have been like to trust in a plan that seems so odd, that seems so hard at times, and that yet is so brilliant. I can't say that I know why Abby has Leukemia or even why we would be the ones that get to be part of this journey with her. She's no Son of God but she is my little angel. And probably like Mary, I wonder how she brings so many smiles to this world, so many laughs, and so much peace to the hearts of the people that she comes into contact with.

Just last Thursday I saw yet another instance of this while in the hospital. We went down to CHOA, our cancer doc's practice, to get Abby's blood run, an exam, and see if she would still need a platelets transfusion. Abby runs into the clinic and immediately brings smiles to the receptionists faces as she prances around the lobby squeaking out something about the Dory fish in her high pitched, cute-as-a-button, little girl voice. Soon after the vitals nurse checks her weight, temp, blood pressure and draws some blood for testing. Abby jabbers away the whole time telling the nurse what she needs to do next. The nurse, smiling the whole time tells me how much everyone fights over who will get to take care of Abby and how since Joanne isn't there today that the other nurses will get a turn, Joanne always pulls rank on the younger nurses so that she can have Abby as her patient. Soon after the stats. were taken and while we waited for the blood to be run, we moved to the recliner area and played a quick game of Candy Land, I think she beat me, I can't remember. Anyway Dr. Smith came over and pulling his seniority card too informed Sara, the nurse practioner that he would be seeing Abby today, with an "I got here first" sort of smile on his face. He also, informed me that Abby was their favorite.

It's just like that, time after time, Abby's smile, little voice, and peaceful attitude seems to be a light to people, especially people in these medical professions. As we walked down the day procedure ward hallway, on the way to get platelets the whole group of nurses, 6 to 7 in all, stopped what they were doing, turned to watch Abby, holding the hand of our nurse mumbling something about how she liked the hospital how the beds that go up and down, and of course they all smiled. Big grins, and she just smiled back. She's always had a great smile. From a little smiley 3 month old to a just over 3 year old, her smile rarely fades. The nurse at the hospital also told me how Abby had won the hearts of all the nurses the last time she was there too. I don't think it is the smile that really gets me, or all these nurse and doctors that have commented on her, I think it is just the expression of the love that is inside her. Abby truly is a little angel, my little angel. She truly does, in her little 3 year old way, really want to brighten up people’s days. I don't think she understands it yet, or does it in some co-dependent way like we are more prone to do; she just does it because that's who God made her to be. A little loving 3 year old, who somewhere in the depths of her sole, without ever have being told, knows that regardless of the outcome of her trips to the doctors, regardless of the side-effects of her meds, and regardless of the outcome of this whole crazy disease that love still, and only will win.

Smile on Abby :)

All moved in!

Wee are all moved in and it is great! Our friends decided to do a kind of "Extreme Home Makeover" style move and it sure was fun. At least for us... we got to go hang out in a friends parent's house for 2 nights while they packed us up, moved us in and even decorated every room in the house! We even had the bus pull away from our house to "reveal" it to us... ok, well it was actually a minivan and the house still looked the same, but it was fun nonetheless.

I think they were decorating all day long and I do know that during the week some folks were there finishing the wood floor till the wee hours of the night. Thanks guys, I hope my neighbors still like me:) , I bet they will. Anyway, I had a good time and I think all the people that helped did too. Thanks soooooo much everyone, the house is beautiful and a great blessing for us and our girls.

I'll try to post some pictures soon... I just don't know where that cable is right now. I type more too but I cut my finger and so this message is getting long quickly. Yep our extreme make over had an injury too. Drama, new paint, moving a minivan, long nights, lots of help... man, I think we could start our own show! Thanks again to everyone who helped in sooo many ways. Thanks a ton!

Hey, when are we going to finish the basement? :)

Abby's doing great by the way. She's going down to Denver again to day for a couple shots in the legs and some chemo drug in her IV. This particular drug, vincristine, causes some leg weakness but other wise she tolerates it really well. Two more weeks of this phase, the consolidation phase and the on to Interim Maintenance. We'll keep you all posted as to how that goes too.

Later

Change, Change, and more change :)

Well, things have been a bit nuts here lately. Not in a bad way, just a fast paced kind of way... Painting the new house, installing wood floors, air filters, light switches, trying to finish my M.S. Thesis paper, packing, and lots of Dr. appointments have made for a very packed schedule. Let me first give you and update on Abby.

Abby is in the 2nd half of the consolidation phase which is pretty much a repeat of the first month of this phase. She is doing well overall. Tuesday I took her down to Denver for an examination and to get some more Ara-C. Her immunity, ANC, was only at 300 so we have to watch out for fevers and infections. The Ara-C also lowers her red blood cell count which was at a 7.5 for hemoglobin, the part of your blood that carries oxygen. Anything lower than an 8.0 and she has to get a blood transfusion. .. So, Tiffany is going down to Denver today with Abby to get that done at the hospital. It takes about 4 hours to put the blood in and is painless for Abby with her Broviac port. All together the whole thing will take about 6 hours plus the drive down and back, a full day in Denver.

On Tuesday we also so the eye doctor about her hemorage. He said it is almost all gone, and her vision is about 20/30 in that eye I think, that should go back to 20/20 when the whole thing is gone. Her eye is still crossed inward and they aren't sure if it will go back quickly or not. Sometimes people have a disposition to the crossing and when they are weak, sick or tired, it will turn in. That may be the case with Abby. Even if it doesn't come back on it's own, there are things that can be done to straighten it later. Until that time we will continue to patch it for 2-3 hours a day, the good eye that is, to make the turned in one work.

The news about Abby's eye made me pretty sad. I guess I just wanted it to go away as soon as the hemorage was gone, but it didn't and that stinks in all honesty. But, once I went through the emotions of sadness and my little, "this isn't suppose to be this way" little dance in my head and heart, I felt much better and once again I am feeling the peace that surpasses all understanding... and that is a good thing.

On the home front, we just had our last night in our little apartment and will be staying at a freinds mom's house until Saturday when we will take residence of our new house. This apartment has treated us very good for the last 2.5 + years. Be brought Anna home to this house, and yes she slept in the bathroom for a few months but it worked out fine. I never got around to building my pully system loft room in the stairway for her but the Moses basket worked fine, just not as cool. We also will miss the community of the University Village Apartments, and the diversity. Where else can you take an evening stroll and see people from 30 different countries and smell what they are cooking in such a small area. So, to say the least, we will miss it, lots of fond memories.

On the new home front, we are in the process of installing wood floors in the hallway, front room, entry way and kitchen. It's a big process, but my Grandma wanted to have us put them in for dust and cleaniness reason for Abby, so away we went. Paint is done, we bought a new IQ air filter for Abby's room, and replace some of the old outlets and switches. The place looks awesome and I hope that Abby likes it... and yes Aaron, we get to live in Abby's house too:)

So there it is, I'd write more but I have to get Abby and Tiffany out the door, Anna to a freinds for the day, and myself over to the house to nail down some more wood floors!

Buh-Bye

Saturday morning 6AM

So I wanted to post and let you all know how I am doing, it's been awhile since I've been on here. I am way excited about our house, we were sharing how quickly we found it and did all the paperwork, loan stuff, etc. with everyone at closing yesterday and they were amazed it all went so quickly and so smoothly. Thanks God. I feel a weight has been lifted off of my shoulders in being given this house. I have so loved living at UV, and I was crying as I walked through our apartment last night after the girls were asleep and Mark was at Home Depot with Brian buying 20 something gallons of paint. We brought Anna home here, we moved in when Abby was only 8 months old. It has been a loving and fun community and we will miss it dearly. But, onto new adventures. I try to stay focused not on circumstances but on truth, God's truth. His faithfulness, His goodness, His power, His love... all are over circumstances. Things can be going totally crappy and God is still God and in control. But I gotta tell you, I am SOOOOO excited to have a bigger place, a yard, a garden, a swing set, color on the walls.... so nice.

I would like to give you all some info on how Abby is doing, I know many of you like specifics to pray for. She is doing so well. She is a bit more tired than two weeks ago, now that chemo has resumed. Her legs are weakening but so far she can still walk, climb and run for the most part. She is waking up during her nap and some at night and just crying. She seems uncomfortable but not enough to wake her up, she seems in a dream state so maybe she is having bad dreams. Some older kids that can talk about their side effects have said they have weird dreams on chemo. Her eye is still improving, the doctor will look at it this Tuesday in Denver. The hemorrage has gone down a good deal, making it easier for her eye to see and not have to work so hard and therefore turn inward. We still patch her good eye for 1-2 hours a day and that helps and she actually loves it. She is pirate Abby, thanks to my dad who came to visit with a full eye patch, pirate hat combo and she totally loves the eye-dea -tee hee. She will continue the weekly chemo in Denver which is primarily the vincrystine in her IV and a shot of PEG in her leg once. We give her 6MP in a pill form at night and AraC in her IV 8 days out of the 3 weeks. I have to be honest, the AraC is the hardest. I will share my experience last night in hopes it will help you get a clearer picture of what to pray for.

Mark was at Home Depot and he usually gives it to her (it's the one he accidentally squirted on himself) but tonight it was me. It is DNA altering, and a known cancer-causer. It is responsible for possible cancers she might get later in life amoung other side effects. It makes her sick, although this round we haven't seen any nausea (yeah!) and the anti-nausea med we give her an hour before is great. But pushing it into her IV is an emotionally wrenching experience. I sat there for about 5 minutes praying and talking myself into doing it. I know God is in control, I know he loves her and has a plan for her life that is good and not only that, but the best for Abby- even if it involves dieing or surviving but having side-effect related issues. But for a mom it is still very unsettling. So in a new attempt to not bottle or stuff my feelings I cried out to God and asked for help. Just because I know he loves her and is in control doesn't mean I have to put on a smile and accept it without question or being real with how I feel. I told him I didn't like it, that pushing some toxic chemical into her little body sucked. I want tea parties and trips to the zoo, not this. I learned something in that moment. I was real with God and he responded with so much love and peace, even though I was still upset at the reality of the whole thing. I saw how hard things can heal us-like chemo and my own struggles through this. I saw that I need to let go of her life, to try to control it our do anything to protect her body is impossible. That brought a sense of relief and a weight lifted in my heart along with a great sense of loss and helplessness. I can love and comfort but I can't do anything physical to heal or protect my little girl. That brought tears to my eyes but also a peace that she is in the hands of her creator, her heavenly father. Do I really believe that he is enough for her? That he really does love her more than I do? That his agenda for saving the world isn't at odds with his good plan for her life but that the two are the same? Do I really believe that I can come to him, greiving and in pain and that he will have something to say in this? I was listening to the NPR interview with John Piper after the tsunami hit Sumatra and he kept saying that God works all together for good for those who love him- actually God said it first right? The big question was, did God send the Tsunami or just allow it, knowing he would fix what he could after. God's sovereignty has to be grabbed ahold of on the other end of things like this. We can't remove God's power even though there is mystery in why he causes these things to happen. We can't say he is powerless or that he just half-heartedly allowed this tragedy in our family. He saw that it would be good in the end, and in the middle too, and so whether he caused it or just let sin do it's thing in this broken world, I don't know. But the deal is, He isn't into sparing us from pain but bringing us to him. So my realization in all this is that regardless of how things turn out or how difficult they are in the middle, the goodness of God in tragedy is that he offers us WHO HE IS to fully enjoy NOW in this pain, and that is enough, more than enough. If I can wrap my mind and heart around this I know ther will be profound growth in who I am in God and in my intimacy with him. A ong I heard that stired my heart and maybe will yours as well:

I've heard questions without answers
I've know sorrow
I have known pain
But there's one thing that I cling to
You are faithful
Jesus, you are true

When hope is lost
I'll call you Savior
When pain surrounds
I'll call you Healer
When silence falls
You'll be the song within my heart

I'm alone out of my sorrow
Thru the darkest night of my soul
You surround me and sustain me
My defender forever more

I will praise you
I will praise you
When the tears fall
Still I will sing to You
I will praise you
Jesus praise you
Through the suffering
still I will sing to you
Always sing to you
Jesus sing for you

When the laughter fails to comfort
When my heart aches, Lord are you there?
When confusion is all around me
And the darkness is my closest friend

I will praise you
Jesus praise you

Little bald heads

Here I am again sitting at the CHOA office surrounded by little bald heads. I feel like I've been gone for the last 3 weeks, lost in the numbness of life, trying not to have to feel. But here we sit on the eve of another part of the phase with no guarantees as to how it will pan out; feeling not so ready to plunge head-long into our out-of-our-control life again.

When you walk into the CHOA (Childhood Hematology and Oncology Associates) Clinic you are greeted by the normal doctor waiting room paraphernalia, toy area, Nemo style fish tank, and the like, as well as some very kind office managers. But really, before you can let yourself believe that you are just at your regular doctors for a checkup, the sore-throat or vaccination kind, the reality of where you are hits you. All around the walls are black and white pictures, large portraits actually, of little bald kids, some have wisps of hair or little tuffs; those hairs that just wouldn't let go and are justifiably being left on the heads as a badge of honor. Others are just clean headed, not a hair on the horizon. The other thing that strikes you and brings you back to reality is the cute little hat tree next to the door, filled with hats free for the taking. If you had somehow missed being brought back to reality of visiting a cancer clinic by the end of the appointment the double door closet filled with toys, hand-made quilts and more hats made for cancer kiddos would probably snap you out of it.

Tiffany was reading a little board book last night to Abby called "What is faith" a simplistic book that talks about trust, patience, believing the best about things, all very simple elements of faith. On one page is this picture of a little girl loading up all of her toys in a box to give away to other kids that would need them more, a very kind act indeed. The sentence read, "Sometimes faith is giving all you have to someone else... because you know God will give you everything you need." I've read it many times, as has Tiffany, but this time we also noticed the label on the box... "Toys for Children's Hospital". Tiffany said out loud, "You know, that's us." Just reading our child a book, and bam, oh ya she has cancer.

I've felt pretty good lately, at least I had thought so but the combination of a lot of things in life and especially having to mark down all the medicines on the calendar for the next month has kept me from squelching my feelings any longer. I'm not despairing or anything, I just still catching up with the reality of life and honestly, as crazy as it sounds, the reality of it all still often sneaks up on me.

But all in all, the last 3 weeks have been really, really smooth in comparison to what they could have been like. No rushing down to the hospital, only 1 to 2 trips to Denver for a couple weeks and last week we didn't even have to go to Denver, we only had to make the 5 minute trip to Poudre Valley Hospital here in Fort Collins to get blood drawn. What a great time! I really loved it. No meds, no major concerns, her eye is almost back to normal, everything is going great... And now we start again. Honestly, I just don't really want to start, I want her to be done, I don't want to lose my little girl back to the fantasy feeling world of chemo drug side-effects. The one effect that we are still not looking forward to is the full lose of her hair. She's been pretty unaffected in that realm up until this last round and we think that this one will probably take the rest of it. Tiffany combs out a fair amount each day but Abby has such a thick head of hair that it just isn't that noticeable yet. I guess we'll see. I'll get used to it though, probably like her cute little bald head. Maybe I'll have to get my camera out at the end of this phase and take a nice black and white portrait of my little bald-headed daughter. I'm sure she'll look more beautiful than all the pictures in lobby of CHOA combined!

I'll post a shot of her when it all goes away.

Till later...

Feeling like Hermits.

So, Abby's still doing good, actually really good. We have had to postpone the start of the second part of this phase of treatment again because her blood counts still weren't up high enough of Thursday. On Sunday we will get her blood run again and hopefully she will qualify to start, her ANC has to be around 750 currently it is only 500, good just not good enough.

Lately we really have been feeling like hermits though. A big part of it is that we can't take Abby out in public when her ANC is below 500 (neutropinic). For the first 6 months that is just how it is going to be though her counts will be low, then bounce back then the chemo will take them down again. After the first 6 months though it should be better since they try to keep her counts between 750 and 1000 ANC. I'm looking forward to those years of the treatment just so we can interact with people.

That's what we miss the most, adult interaction with friends. I mean don't get me wrong, I like cutting paper into tiny pieces and putting stickers on construction paper and even on occasion cutting the stickers into little pieces, all great fun but a little monotonous sometimes. Maybe a house will help with that because we will be able to have people over and actually have a place for their kids to sleep other than the bathroom and out bedroom. But really, we just miss people and I think the reality of 2 months of living with out the adult friend interaction in our lives has finally started to wear on us. Maybe also it is the fact that the last two weeks have been relatively easy, no meds, just a couple trips to Denver, and lots of mellow nights at home.

So anyway, things really are going good, I think we just desire true community but we just don't really know how to do it either. So if you know how or have ideas on how to help us stay connected during these immuno-compromised months post a comment, give us a call, email, write us a letter, or just stop by... or all of the above; we'd love to just say "hi" and enjoy some conversation.

I'll post soon as to when Abby is going to go down again to CHOA for her all day chemo session, probably Monday if her counts are good.

Love you all!

To low to start

Well, Abby went in to get blood run yesterday and it turns out that she is still too low to start this next part of the consolidation phase. Her ANC (immunity) is only 350 and it needs to get to 750 before we can start. She get blood drawn again on Thursday and if the results are good, we'll take her down for the all day chemo on Friday, if not then we'll wait till next week and she how her counts are.

Other than that things are still good. It is kind of nice to have another week of no meds. The only thing we have to watch for is the fever thing with her low counts.

Just a quick check in, hope all is well with you!

2 months down, 28 to go

Well, on Tuesday, we will start 2nd course of this Consolidation treatment with an all day chemo at the clinic, and then back to the Ara-C and Methotrexate at home. The last couple weeks have been really good, I almost said blissful but it wasn't quite that great but still good. Other than Abby's counts being dramatically low for a week or so, and a couple low fevers there hasn't been much drama... and that is a great thing! So lets catch up now.

Abby has been still having weekly appointments at the clinic, CHOA, and for 2 weeks has been resting from the Ara-C and Methotrexate to let her counts come back up. For these last 2 weeks she has been on weekly spinal taps still with methotrexate administered in the spinal fluid and on Vincristine once a week too.

She also had another eye appointment and the doctor said things are looking good. She could definately see better and the doctor estimated another 2-3 weeks until the blood hemorage is fully dissolved back into the body. Patching her eye has been fine, she likes to be a pirate. Robin joined Vicky here this weekend and brought his own pirate outfit complete with eye patch and cap that he found at pirates.com I believe. Abby got a kick out of having her "Pappa" dressed as a pirate!

See, what else... Tiffany and I got to go to Boulder for an overnight while Tiffany's parents watched the girls. We had a great time! It was really nice to get away for a night and we even talked a bit about things other than Abby or Anna. I also sprained my ankle today, so I'm not much help to my family but I think I'll be healed up good enough by the end of the week.

We are closing on our new place on the 18th, we took Abby and Anna over there for the inspection and they loved it! Especially the back yard, finally a place for them to run around! For the next couple days Abby kept asking to go back over to our new house, even after I explained to her numerous times that it wasn't our house yet. She's a hoot.

I think that's it for now. We'll get a blood test tomorrow to see if her counts are high enough to start back up with chemo on Tuesday. We'll let you know!

Buh Bye

Everything feels almost normal

I haven't posted for awhile because to be honest, everthing seems amost normal. If you were to come over and watch Abby and Anna play, you would probably only notice a few things but wouldn't really guess that she has cancer. Ya, her hair is starting to fall out but she has so much of it that it isn't really that noticable yet. And yes, her walk is a bit straight legged and her eye a bit off but if you didn't know any better you'd just think she had some minor problems. As for medications, we haven't had to give her more than one this weekend which has made bedtime much more enjoyable. Her mood has been great and she has had a great time playing outside lately. The only thing that has been a real issue has been her tummy and even that seems pretty low key to me. But she does still have Leukemia and it still is a long road ahead but man am I glad for a bit of a reprive!

It is a bit weird to be in this spot where she seems so normal yet I know that there is still more to come. I don't really know how to explain it, maybe it's just the fact that she seems so normal and then somthing quickly and harshly reminds you that it isn't the way that it used to be. Like church for example, we went as a family this weekend, the first time since the whole thing was uncorked. It seemed normal enough, get the kids dressed, put them in the van and go to church... but from there it changes a bit. Now we add in: put the mask on Abby, sit away from potentially sick people, keep Abby and Anna with us instead of in the germ infected nursery, worry when people cough around us, etc. Now don't get me wrong, we had a good time and worship was great. The parts of the sermon I caught were good too. But we did end up leaving early because taking care of our girls during the message proved to be a bit focus and time consuming than we had thought it would.

So, we are very thankful that Abby is doing so good and we have had a great time with her, we are just trying to figure out what we can do together as a family during these intial 6 months when things are a bit more trying.

One thing that will be nice in the near future will be moving into our new house! Yup, we close on the 18th of March and then will move in the following weekend, the 26th. During the week of the 18th we are planning on working on the house, paint and such. Also, it give us a bunch of flexibility so if Abby is sick that week we hopefully won't feel rushed to move out.

If you want to help move us, paint or fix up some minor things shoot me an email and I'll either fill you in or forward it on to Brian and Cindy Siebert, I think they are going to coordinate it all for us. Is that ok Brian? :)

The Sacrifice that is Worth Taking!

Hi to all of our family's friends, prayer-partners/warriors, and family members in Abby's journey! This is "ole Rob" filling you in on the journey from a California perspective. As you can see it with your own eyes...my sacrifice is something that God blesses! My darling wife is hanging with the Colorado clan and having tons of time with Abby. This pic was taken last month when days were filled with much more tension, uncertainty, pain and chaos. We felt the presence of God in that part of the journey in ways that we cannot even begin to express. Now, we are on the other side of one of the mountains Abby is scaling...she's a "rapid responder"...she's in "remission"...all that is awesome news! There are even times when my "way too young to be called a Nana" Vicky and Abby are reporting much giggling, jumping and fun being had in these moments. Even so, just as you can scale one huge mountain in your life and feel accomplished for doing so, there are always more to climb. We are not void of a poliferation of peaks to ascend. It is the same with Abby...a few peaks have been climbed...there have been victories...but more is ahead! As Abby's grand-father (still something extremely difficult to fully admit since I'm such a young pup!), I still call each of you to prayer. There isn't a moment where we are not coming to the throne of healing and grace and seeking God's mercy! So, thank you for the sacrifice of your time, energy, gifts, love, and prayer. Believe me, it is a sacrifice worth taking! It is a sacrifice that is a "sweet aroma to the Lord". Our trust in God is filling these strenuous moments with gifts of hope beyond measure!

I'm running out of good titles... another appt.

Abby and Anna

Just got home from rescueing Anna from a potentially germ infested house of our freind who was watching her while Abby was at the clinic. Seems like Anna is a germ magnent! She could stay inside our super clean house, in isolation from all sick kids and the like and it seems like the first time that we go out or she plays with another kid... boom!... She gets sick. I guess we'll see this time.

I left early from work after getting a call from Tiffany who had just got a call from our freind who was watching Anna telling her that her little boy was throwing up. I sure hope Anna doesn't get it because it seems like when one person gets a stomach bug the whole family gets it and boy I really don't want to have to watch Abby get anything else if we can avoid it. But it happens and if it does no big deal, we'll deal with it. Abby's counts are up so at least we wouldn't have to take her down to the hospital.

On that note, Abby is doing good still. She's still a bit cross-eyed but that's ok, I can deal with my cute cross-eyed little cancer patient until it clears up in a month or two. Until then we still need to patch it for a couple hours a day but she does fine with it so far. I'm going to get her the pirate get up and we can pretend that we are on a ship sailing the 7 seas! ARRRR ye scurvey Dawg!!! I just really wanted an excuse to type that:)

As for her appointment today, it sounds like things went well. Abby's a bit tired and when she is like that she can change into a very, well lets say "spirited" little girl... ok so she get a bit, no not a bit... really nuts sometimes and out of control, screaming and all. Not a fun experience but it has happen both yesterday and today, hopefully whatever is waking her up at night will stop waking her up and she can get some good sleep. Better yet, since her counts are up, ANC =900 today, we can give her Ibuprofen to take the aches and pains that she may be having away! Yippee! Pray that that will help, her cute smile can only go so far, you know?

She also got her PEG shots, (one in each thigh) her Vincristine (the one that gives her the aches and pains and muscle weakness too), and she had a lumbar puncture (spinal tap with chemo). So lots today in the office but at least she is off the Ara-C and 6-MP (oral med) for a week... that will be nice.

That's my quick or not so quick update. buh byeeee

Living in a Dream

Tiffany and I both feel like we are living in a dream. Part of it comes from the whole surreal feeling of having a kid with cancer, part of it the new life style that we live in and a big part is the realization that we really have no control in this life. Just different to get used to ya know? We start to get used to it a little bit and then something else pops up, like Abby's eye problem or thoughts about potential side effects of the chemo drugs like infertility for her and once again, back into this surreal dream state.

"Take my life" from the passion CD just came on as I write this, the chorus goes "Here am I all of me, Take my life it's all for thee." That's what I feel like has happened in all of this. I feel like I didn't really have much to give before this and if that is the case I really don't have much right now. Actually though, I have a lot more now because I'm not trying to control everything.

Another aspect of this dream state that we are in just came in to play as we are in the process of putting an offer on a house. Ya crazy I know, but what isn't really crazy about my life right now... so why not buy a house. No really, we weren't planning on this at all but through some very generous gifts towards the down payment from our family we are now in a position to get something. Crazy, we're getting a house. Last week we just went to look at rentals while my folks were here because the added stress of this small apartment was getting a bit tough. If you haven't ever seen our place, it's small, a shoe box really, 11.5 feet wide and about 30 feet long. At least is it 2 floors but still, a bit small to have to live in when you can't take your immune-compromised child out to public places. So, we're moving, buying a house and now living in a dream more than ever!

The real estate agent asked us if we were excited and we had to think about it for a minute because, like I said before, this all seems so far beyond us. And yes, we are excited but it also doesn't seem real, I mean we looked at rentals last Saturday, then houses on Sunday and some more this week. And then we found one yesterday 2 days ago and away we go! So, if it all works we'll get an accepted offer on a nice 3 bedroom ranch with an unfinished basement and a nice backyard for the girls to play around in. Now we can have people come over and we'll have space for them to sit!

We'll keep you posted!

Lately we have just been tired. We get up in the morning have maybe a half an hour before Anna starts to tell the world that it is time to get up, usually around 6:30. Abby gets woken up since they are in the same room and so I either move her to our room or just let her get woken up by Anna.... Then it starts, we get them up, or I leave for work and Tiffany gets them up, and the day gets going. Meds, meals, naps, germ-a-phobic hand washing, play times and the like all day long. For awhile there, when Anna was also on meds for RSV, bedtime seem more like medtime. I'm glad she is off of those! Currently we give Abby an antinausea med at 6pm, clean her mouth, rub Nystatin in it too, then no food or milk, at 7 she gets her Ara C via her Broviac tube, (clean the access cap, 3ml saline, Ara C, 3ml saline, then 1.5 of Heprin) then the 6-MP crushed up and put in chocolate syrup, and then get her to drink lots of water with it while we read a story. Somewhere during the day we clean her Broviac site where it enters her skin so she doesn't get another staph infection. And then to bed, lately we've been putting her down in our bed with towels over our comforter and a bowl just encase the nausea matures and decides to exit via her mouth. By 8pm we usually get to sit down, contemplate the day and try to rest a bit before it all starts again tomorrow.

<>In the midst of this I did have some energy so I went running; only my second run since this whole thing started, and man was I tired. I thought I'd just do a little jog to relieve some of this pent up stress and get out in nature, so I drove to the west edge of town to run around the foothills. There are some really nice trails that roll up and down along the bottom of the hills there, a great place to jog, think and pray. I got out of the car, stretched and started up the dirt trail. It was getting late enough that the sun was starting to get low in the sky. As I got closer to the steep hill ahead the sun started to disappear behind it and I was left in the shadow. This frustrated me a bit because all the joggers that were running below on the road were still in the sun yet I was stuck in the shadow of this big hill. Their road was flatter, sunnier and probably much more enjoyable than the one that I had picked. But nonetheless, I continued on my trail.

As I continued running my normal loop I realized how poorly in shape my body was too. I was soooo tired, the trail looked way too long and I didn't think I was going to be able to even make the run back down the trail. I decided to listen to the complaints of my feet and knees and turn around. So I did, I turned around to jog back down the trail. About this point is when I got my second wind, maybe it was knowledge that I was more than half way done, or a flat part of the trail but I felt great. I thought about how tired I get at home, how tired Tiffany can be and especially Abby. As I ran, I finally got back to the sunny part of the trail and the warmth of the sun felt great.

It's been pretty easy for Tiffany and I to feel run-down lately. We also feel a bit like hermits. We don't want to be hermits but after the day we are just spent. Often, I look down off this hill that we are on and see all the people running their flat routes in the sun and just wish that was me. But it's not, and actually I think I'd rather be right where we are. I like our path, I like the rolling hills, the big rocks along the trail, all that stuff. Sometimes wish that it was sunnier and that I was in better shape for it but the more I run it the better shape I'll be in right. Really I like the run though, sometimes it’s tiring, but it also can be so beautiful, so peaceful and good.

So that's were I'll leave you.... I'm going to bed

The Eye Problem Diagnosis

So, we've been watching Abby look at us cross-eyed for a couple weeks now with no real improvement. The first appointment that we could get with the recommended eye doc wasn't until the end of Feb so we were just planning on waiting. Yesterday during the appointment with Dr. Smith he decided that we should probably get it check out and so he got us an appointment in the afternoon with the same doctor. This doctor works with Pediatric Oncology patients primarily so that was why we were waiting for him, Dr. King.

Tiffany took Abby there in the afternoon after the lumbar puncture (LP), basically a spinal tap where they inject Methotrexate to get rid of the cancer cells on the other side of the blood brain barrier. Abby did good for the procedure considering she couldn't eat that morning because of the sedation that they use for the procedure. After she came out of it she wasn't so happy though so I think they will try it with out sedation next week. Anyway, Dr. King said that she had a blood hemorrhage in her eye, probably because of the low platelet’s that she had and that it would take a few months to clear up. Basically she can't see out of her left eye when she is looking straight ahead because there is a glob of blood trapped in a fluid sack which disrupts her vision. She can see when she looks up or to the sides, just not straight ahead. Since it will take a month or two to resolve she is going to have to wear a patch on the good eye to force her to use the left one. We'll go back and see Dr. King on March 4th to see the progress.

Other than that the only other concern for Abby right now is that her hemoglobin is low and her ANC is so low that they can't read it... so, expect us to post on the blog in the near future from the hospital. We'll probably go down with her with a fever since her ANC is soooooo low. As for the hemoglobin count Abby will be getting a transfusion again on Thursday to bring it back up, right now it is on ly 8.1, pretty low.

Anyway, there's the info! Anna doing better, Abby is in a good mood mostly and other than being perpetually tired, Tiffany and I are doing great! Thanks again for all of your support!!!

Bye, bye.

Did I mention Anna has RSV?

I think I forgot to mention that Anna has a chest infection, most likely RSV. They put her on a bunch medications too, makes bed time that much more fun!:) One of the meds it Predinsone! One of our favorites, also a air way diallator, and an antibiotic.

She seems to be doing much better now we just hope Abby doesn't get it! Yikes! Oh well.

Just thought I should let you all know.

Abby's doing Great!

Just a quick post to say... Abby's doing great! The Ara C and 6-MP, the new chemo drugs, aren't making her nauseous and she is walking around a lot more this week.

I'm a bit better with giving her the Ara C in her IV tube now, but still I'd rather not. This week I spilled some on my hand and we got repremanded by the office for trying to get the air bubble out... it was a BIG bubble by the way but still... They told us to leave the bubbles!!! And also how carcinogenic that Ara C can be, alters DNA and such. My thought was, "why are we giving this carcinogenic drug to our daughter again?... to get rid of her cancer?... ironic huh? Anyway, if my hand starts to glow or grow large tumors out of my palm I'll probably give them a call. I did have to throw away my shirt that I was wearing at the time, my YLI journey shirt... I guess I'll just have to be ok letting some things go along this journey! :)

Abby helped make cookies yesterday, has been playing A LOT more and is much more content. Her eye is still a bit lazy and legs a bit stiff but otherwise she is really improving!

Well just wanted to let everyone know how things are going this sunny and bright weekend in Colorado.