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.

The start of Consolidation

Abby has been pretty happy lately. Not just sitting on the couch. Her counts are very good, 900 ANC, good total white cell count, and every thing seems to be going good with her blood production. Since she is so good, we now get to move into the "consolidation" phase of the treatment. 2 months, 4 new chemo drugs, weekly lumbar punctures and administration of Methotrexate in her spinal fluid, and a couple anti-nausea drugs to tone down the side effects.

Tuesday was the start of this treatment and she was there with Tiffany for most of the day. They had to hydrate Abby really well and get the Ph of her urine to a certain place while they gave this one chemo drug, cyto.... something. We also started 6-MP which is an oral chemo drug that Abby is learning how to swallow. At this point she seems to think they are like a mint and therefore should be chewed up or just sucked on... not the same minty taste though I would think. Last night we ground it up and put in some chocolate syrup and that seem to work. This med she can't have with food, especially dairy or citrus because it binds with those and don't work the same.

The other drug she is on is Ara C, I don't know the long name, and it is give via her Broviac tube. We gave this to her yesterday night after giving the anti-nausea medication to her and hour prior. It is only about 3 mL but I think that was one of the harder things that I've had to do. Tiffany was reading Abby a story as I clean the tube end, added saline, then the Ara C, saline again and then heparin to keep the line from clotting. As I gave it to her, I started getting nauseous just thinking about what this drug will do to my now cheerful little daughter. I had to take a break so I went into the kitchen to throw away the now empty syringe and wash my hands. I washed them for a bit longer than usual, pondering as to what I was really trying to wash off. It's hard to give her these drugs knowing what they do, the good and the bad. Obviously if they keep her alive, or even have the chance of curing her, which they do, I will continue to give them to her, regardless of the side-effects. It's just hard.

We went upstairs as a family, put Anna down and then together Tiffany and I prayed for Abby. We even anointed her with some oil, not as a magic cure-all, I really don't know why we did, maybe just by faith, just to feel a little closer to our God, knowing that He has the power to heal her or not, and being ok with that. I really feel like we gave over our control, our desire for a full uninterrupted night sleep, and our "suppose to's" again. Not in a defeated way, but a hopeful way; a way that let us just fall in to God's arms and be ok with whatever the night would bring.

The night brought sleep, lots of it in fact. Abby cried out just once and went back to sleep before I could get upstairs to check on her. She didn't throw up either!

Ahhhhhh..... I love a good night's sleep.

All I Can Say

Well, that Dave Crowder song came on as I was standing in my living room, looking at Anna eating her peanut butter toast with Abby's fleece jesters hat on and her pjs, whiggling around in her chair like she does. I had just done the second meet at the door and switch off with Mark for the day as he now took Abby to PVH to have blood taken to see if we need to go to Denver tomorrow for chemo since her blood isn't tip top yet. I thought, ya know, I'm so glad God takes us as we are. The song says, "Lord I'm tired, so tired of working, and Lord I'm so alone. Lord the darkness is creeping in, creeping up to swallow me. I think I'll stop here and rest awhile. This is all that I can say right now, and this is all that I can give." And with God, that's enough. In fact, I'm learning that for God, that's what He most wants. Our realness, for us to just give him what's really there, even if it's not very spiritual. I'm so thankful for that. I am hanging in there. That seems to be what I say to everyone when they ask me how I'm doing. I am hanging by a thread sometimes, but God has me in His hand. Thank you all for your continued love, it is a great comfort to my hurting heart. It is great to see my little girls smile and laugh again. She is teaching me so much.

Denver, 4 out of 7 this week

So for our week "off" between induction and consolidation we went to Denver 4 out of the 7 days, the final trip was Saturday night where Abby was admitted to the hospital for a high fever. We were just about to head out to our friends house and have some hang out time, and I mean just about, when we decided to take Abby's temperature again. We had been monitoring it since she has a staph infection and Dr. Smith told us to call if it reached 102, 101 under the arm. It had been hovering around 100 for a few days but Abby was acting fine. I was getting Anna ready when Tiffany said that it read 100.8 under the arm... I told her to take it again, for sure our thermometer was wrong... sencond reading, a solid 101... add a degree for under the arm and whola! 102. Called the doc and he said I could take her to the ER or bring her down to Pres./St. Lukes. I told him that I'd be right down.

We got down there in good time and of course her fever was gone and never came back all night. Oh well, being an hour away it's not worth it to wait and see if it persists or keeps climbing. We only had to say the night and Abby was released durning the half-time show on Sunday.

Actually I was glad to go down because I've been a bit concerned about her eye. Her left eye is now drifting towards her nose and she is more often than not closing it to see better. Dr. Smith talked to some eye doctors and checked her out for anything serious at the hospital and she looks fine. He thinks it is probably just that she needs glasses. I'll be relieved when we find out for sure though because it just seems odd to me that this started to come on after a heavy duty month of chemo, low cell counts, a staph infection, and major antibiotics.... but that's just how my brain works, could be nothing.

Other than the eye thing and a yeast infection, yup we got medication for that one called in last night, Abby is in good spirits. Her blood counts are coming back up and she should be good enough to start the next phase of chemo, consolidation. That will start out with an all day appointment tommorrow at the CHOA clinic to infuse another chemo drug into her system. We'll also have an eye appointment sometime this week but otherwise it should, and I say should with a lot of hope, be a fairly mellow week, except for the antibiotic does every 8 hours. At least this antibiotic only takes 5 minutes to put in... way better than the vancomyacin which took 2 hours+.

Well, there's the update, hope all is well with you and your family too.

Christmas in Feburary?

Sitting here in our perpetually Christmas time living room not really feeling the Christmas cheer. Maybe it's the fact that I was woken up a few times last night by coughing, crying to go "potty" or just our alarm notifying us that it is time to give our leukemia daughter with the staph infection the IV antibiotics. Maybe it's the fact that it is almost Valentines Day and the only red things that we have in our house are the red mittens woven into the garland that drapes off the banister. Maybe it's the fact that Abby's legs being the size of small ladies wrists don't function the way they were meant to right now. Maybe it's that helpless pit in my stomach that seems to continually surface and sap away my strength as I watch my family walk this new life out in the same weak and stiff legged way as my daughter... every 10 joyful and perseverant steps followed by a head long face plant in the sand. Just not feeling the cheer you know?

I was watching "We Were Soldiers" the other night with a few other guys and the question came up as to who you related the most with in the movie. It being a movie about an out numbered army unit in Vietnam, I wished to related with one of the brave soldiers holding off the enemy. Or actually just any soldier, the ones that were cornered, or who went back to carry out a wounded friend. Some one in the battle, who has the option of fighting a noble but possibly deadly fight. But I didn't, I resonated with the wives, yup the wives. It may seem weird but let me tell you why. You see, these wives all had their husbands sent off to war. They had to stay at home with the kids, the bills, and the semi-constant knowledge that their husband may not come back. So they would clean, some would hang with friends, would just stare out the window, maybe longing for the days when their husband was outside playing with the kids. But I bet all of them, when they went to bed at night in an empty bed, engulfed by the silence and alone in the dark thought the same thing... What fight is he in right now? Is he going to be severely hurt? Will I lose my husband to this battle? For me though, it's not my husband, obviously... For me, it's my little girl that is fighting this fight.

Oh how I wish I could be in her place and fight this fight for her. I doubt I would do as good of a job though. After the month of treatment I would just want to be left alone and sleep, hiding from the world in bed in hopes that when I woke up it would all be gone. I would just be pissed, quite frankly, of my situation... but not her.

After a month of treatment she is as joy-filled as ever. Her smile quite often lights up the dark solemn spots in my own life. What faith of a child really. I keep thinking about what she is going to learn in this, but maybe it is what I am going to learn in this. I keep getting sad at her predicament when she isn't sad about it. I keep getting mad in ways and wondering why God allows this to happen to little 3 year old girls with so much life ahead of them... But she doesn't, she is as giggly as ever! I feeling like I should tell her that she should be a bit more depressed. Say something like, "For heavens sake Abby, you have a staph infection, you have a tube implanted in your chest so that you can get medicine (oh, that by the way is going to kill off all the good stuff in your body too), you can't walk very well any more and it may get worse before it gets better. You know you really should be mad about this! You have every right to." But does she? Do I? Do I have the right to put my warped view on this child’s life?

You know, the thing is, she doesn't know what is "suppose" to be. She probably just thinks that when you turn 3 years old, along with birthday presents comes an implant, weekly trips to the doctor, and leg weakness. For her that is all she knows. That is the faith that I want. I don't want the loss of my "how it is suppose to be" to control my life. I don't want to be like the ladies in the movie who try to busy themselves so that they can pretend that life is different than it is. I also don't want to live life starring out the window, wishing for a different day to come, for my "suppose to" to be reinstated. The reality is that Abby isn't off in a war by herself, she probably doesn't even feel like she is "fighting" anything. She's right here for us to enjoy weak-legged and all. Once again I am going to take a page from her book, actually a bunch of blank pages, pages of "I don't know what will happen and I'm fine with it being out of my control", those pages will have to replace my "suppose to be this way" pages and I pray that they will.

On that note, I think the Christmas decorations may have to come down today. We can't be stuck in the "December of Diagnosis" forever. As much as I like the lights, we're going to have to move on. I think I'll have my little girl cut out some valentines today, I think I need to learn how to redecorate from a child’s' perspective. Maybe, she can cut out a purple heart, one for her, she deserves it!

Thanks for coming along with us in our journey in this too, in the ups and downs, highs and lows, all of your comments and prayers are very special to us. Thank you.

Laughing, Playing and a Staph Infection

Well the title says it all. Tiffany just got down to Denver since the results of the blood culture showed a staph infection for Abby. 3rd time down there in 3 days, a bit tiring but we are doing good. Probably because in the last 2 days we have started to get back our little girl from the grips of Prednisone!
Last night she was just giggling, laughing at Anna and even tickeling me with her blanket. At one point Anna dumped all the toys out of a Play-Doh bucket and put it on her head. Abby just busted up laughing and so did Anna, as she played peek-a-boo with Abby. By the time that they were both laughing I was laughing too and Tiffany was starting to cry as well as I. So good to see her laugh and having fun.
Today, Tiffany went to the park with a freind and Abby played on a swing, walked a little bit, face planted in the sand a couple times too, but Tiffany helped her understand why it is hard for her to walk and the it will get better the more that she walks.

As for the infection, she will start yet another course of antibiotics, every 8 hours and we can probably do this at home through her Broviac. This infection, even though it is a staph infection is one of the easier ones to take care of. They'll put her on the big guns for now, and once the see how this type of staph response to other types of antibiotics, they may be able to put her on one that is a bit milder and only has to be administerd once a day. I hope that one works out for her sake and ours, every 8 hours is a bit hard to keep up with.

We are sooooooo glad to have our smilely child back that a life-threatening staph infection really doesn't bother us too much... I mean what part of this treatment isn't life threatening anyway really?

I'll try to post some more smiley photos here soon!

Tuesday Bone Marrow Results

Well, Tiffany is back down in Denver with Abby... she had a fever of 101 so down they went. Anna and I went to New Belguim... just to look at the building of course... I think I got the better end of the deal.

Anyway, from my breif talk with Tiffany on the phone, It looks as if Abby is in remission! That is at least on the preliminary test anyway, the better test that tells how many cancer cells there are per 1,000 or per 10,000 won't be back for a while. That test will tell us how rapid of a responder she really is, or isn't.

As for Abby's current condition, she is on the line between being admitted to the hospital and going home. Right now Dr. Smith thinks it will be ok to give her antibiotics and send her home. Her ANC counts are actually lower than they were yesterday, down to 200 or so, but they should be comming back soon based on how her bone marrow looks. So, they probably are finishing up the IV antibiotic right now, then they'll be home.

Just a quick update, but overall things are looking really good!

Day 28 and Tomorrow's Test

I took Abby to church today, she made it through the first 30 minute but then was getting a bit tired. She had to wear a mask while we were around people, since her counts are still low, and she wasn’t real excited about how it blocked her from smelling her “dee dee” (blanket) and kept her from sucking on her fingers, but it worked and it was nice to get out. One of the reasons that we braved the germ infested world of church was that Anna has a nasty cough and fever anyway, so I figured she’d probably be better off getting out of the house. Anyway, we had fun and it was good to see everyone.

Speaking of tired, I’m tired. This gig is kind of hard, good and worth it but hard. I’m both excited and anxious for tomorrow’s appointment. Excited that she doesn’t have to get chemo again till next week, excited that she will be off the moody prednisone pill for a while and excited that we may get to see more of the little girl that we remember. Doctor Smith, thinks that the leg weakness, excessive hunger, and moodiness will go away once she is off this, and with out chemo either, we may just get out daughter back… But that is also where I get anxious. Anxious about another early morning at the hospital with a hungry girl that hasn’t eaten for 16 hours, anxious about whether or not she really will get less moody when off the meds and a couple other worries. I think that I will stop worrying though, and just hope for the best.

We have really seen some improvements in the last week and on some days, other than walking, she seems pretty normal. I just have a real desire to go out and play with her again, go to the park, have her walk next to me with her whole hand wrapped around my index finger. I’d love to have her want to “hop on Pop” as she says, again when I get home from work. Those times will come, I know they will, I just miss them I guess.

Right now she is sitting next to me eating string cheese, crackers and noodles, her new favorite combo. She’s also been saying that she wants steak, something about New York, I don’t know what she means... Also, she keeps saying Cabernet… and words like ‘private reserve’… J Oh wait… maybe that’s my craving kicking in. Actually I’m glad she doesn’t want pizza all the time or something, I can get club crackers and string cheese pretty easily and it is MUCH better than trying to make bunny mac N cheese!

On another note, Abby is now signed up as an official honoree of the Leukemia and Lymphoma Society for the Team in Training race that I talked about in a previous post. I’ll try to post a link on Tuesday to a website with some photos that participants can use if they want for their support letters. And for everyone else out their that would like a photo of her smile that can light up a room for your desktop, fridge, or encase of a power outage.

We’ll probably know if she is in remission from the tests tomorrow by late Tuesday or early Wednesday. We’ll post them as soon as we know. 95% of kids are in remission by then and Dr. Smith thinks that she will be one of them base on earlier test.

Thanks again!

Some thoughts from Tiffany

It's Saturday morning and I've had two full days of just hanging at home with the girls, Mark at work, and it's felt like a normal life somewhat. But of course what is normal anyway and I am learning that if I set my heart on a normal day or on any of my circumstances I am setting myself up for a fall. And that's good for me to learn. I have been in and out of anger at God and yielding of my heart to His plan. It's hard to swallow a lot of the circumstances of our life right now, like my little girl can't walk more than 5 or 6 steps this week without falling down, and still believe that God is good. But He is relentless in redefining my view of "good" and for that I am thankful. I have been broken and in that place He has shown me the things I hang onto instead of Him. Not because He is narcisistic (sp?) and has to have my allegiance, which has been my belief deep down until now- but because He loves me deeply and wants me to let go of the things that are keeping me from experiencing His amazing love and peace that transcends heartbreaking times. He wants me to know Him and be known by Him in a way that will pull me out of this self-focused place so I can experience truth and see my place in the big story He is writing. That has brought so much freedom (and at times frustration of course, it's not like I've got it all figured out) because I no longer have to make it all work, control, figure it out, whatever. I can let go.

Anyway, I just wanted to let you all know that Abby is doing better this week. She has been cutting out valentines and coloring and talking in non-whining tones and not asking to just watch TV all the time. Her spirits are coming up and that makes me really happy. I feel like I have her heart back as we work on this trust thing between us. I know she's scared and confused at all that's going on but I sense she is adjusting and trusting Mark and I again to protect her as best we can. I'm sure it has rocked her little girl world to see that we can't majically protect her from all bad things. That's probably good for her, but it does break my heart some. It has been good to see her huge love for life starting to return.

On Monday we go in for the big bone marrow test and a spinal tap. No other chemo that day. They are letting her blood counts come back up and will start the next, less intensive phase of the treatment on the 8th.

To Frontier Academy Elementary school- your gift basket brought lots of tears to my eyes. I don't really know any of you but you lavished us with love and gifts and it was so touching, thank you. I am amazed by your generosity and thoughtfulness.

Abby home on Antiboitcs

Just a quick note to tell you that things are fine. They did another blood culture to really see if she has a blood infection or if it was just contamination. At this point she will be on IV antibiotics for 3 days, we just hook her up at home every 8 hours then wait 2 hours and unhook her. Not too bad, a little less sleep for us, but way better than be in the hospital for now. Once they get the 2nd culture back, they will make the decision of if she will stay on antibiotics for longer or not. If she has a blood infection then she will be on something for about 14 days. Otherwise, she'll just finish up the 3 day course.

That's it, hope you got the photo alblum... If you want to be on the list just email me, click in the right hand colum of the blog for the address.

Mark

TNT meeting.... and now a blood infection

<>So after a bit of a crazy day, I decided to go to the Team in Training meeting and see what it is all about. It was a chore, to say the least, to get out the door since Abby was so, tired and grumpy last night. Her tummy was bugging her all day today and I think dinner didn’t set so well, and she was tired, she kept saying, “I just tired”. Well I finally got out the door after putting Abby to bed and scuttled past our energizer bunny of a child, Anna. I don’t remember giving her caffeinated beverages yesterday, or sugar, but she was wound up! Anyway, I drove to the meeting site, a running store, via the wrong running store on the other side of town, and arrived promptly a half an hour late. After signing in, I looked up and saw my friends and co-workers from Greeley, the Carlenos. How cool was that! Thanks guys! You all rock! There were also about 30 people besides them at the meeting, very cool indeed. <>
This meeting really made me value the human spirit; maybe some of these people came because they just wanted the motivation and support to reach their running goal, some for a trip to Alaska to run a race, some even for Abby, like my friends. I just think it is pretty cool that 30 people, in Fort Collins alone, would sit through an hour + long meeting, sign up, raise money for Leukemia, trains for months, and then run, bike or do a triathlon for a cure.

Well, on another note, Tiffany just called and said that she will need to take Abby back down to the doctor. The blood culture that they have been running since our Monday appointment came back positive for a blood infection. Abby isn’t extremely neutropenic, ANC at about 400 on Monday, but still is at high risk of her body not having enough to fight it off. They gave us the option to check her into the hospital since she will have to be on antibiotics for a while or set up a home care arrangement. Tiffany opted for the home care option so we’ll just hook the antibiotics up to her Broviac ever 6 hours it sounds like. Since Abby doesn’t have a fever, the infection is probably not to severe but it still needs to be taken care of course.

Man, I thought we were off of this roller coaster for a bit! Oh well… I’ll keep you posted but no new will probably mean good news.

Back from Denver, all is well

We're back from Denver now, and all is well. Her fever is gone, and she check out all good. Maybe she just has a little cold because of her counts being so low. While we were down there, since we had an appointment for Tuesday anyway, they went ahead and did the next chemo treatment. This will be the last one of her induction treatment. After next weeks bone marrow test, she will have a week off for her body to recover and get her counts back up before she starts her consolidation phase of the treatment, 2 months I think. She'll be off the Predinsone for a bit which will hopefully make her less moody and whiney. That will be a big releif to us, let me tell you.

Her counts are 1300 total White cells, 400 ANC, and the rest of it looks good too. She still is at risk of a fever/infection but not as low as she has been, that is a good sign that her bone marrow is starting work good again.

Well, I'm off to rest. Just wanted to let everyon know that things are A-OK.

Yup... Back Down to Denver

I'm leaving to Denver here in 1/2 hour to meet Tiffany there. Abby has a low grade fever, a couch, and threw up last night so they recomended that we bring her in. She's napping right now and Tiff's going to leave when she gets up. We will just be going to the office for now, they'll check her there give her the chemo that we were going to go down for tommorrow while we are there and if she isn't looking good, we'll check into the Hospital again. Hopefully not, but you never know.

The stress of this new lifestyle is really starting to wear on Tiffany and I. Lots of whining at home, crying, mostly from Abby, (but everyone has their share I'm sure) and stressful times of taking medicine or getting her Broviac site cleaned. Well, time for me to go.

Tell you all more later.

Out

A Way Cool Way YOU can Help!

A Way Cool Way YOU can Help!

Hey, everyone is always asking if they can help and other than cleaning our house weekly, watching our kids so we can go out for a date, or lavishing us with lots of love and prayers I haven't had may good ideas. But now that I'm a bit more past the shock of the diagnosis and have been poking around online, I've found a big winner of an idea in my book!

There is a great organization called "Team In Training" that does sponsored races to help children with Leukemia. Way cool idea really, and the best part is there is an info meeting tommorrow night in Fort Collins! I might even go if I can get away for an hour. I think it would be really cool if any runners, bikers or triathatetes out there would want to race and at the same time help out kids like Abby. You can even run with a picture of Abby or another child with Leukemia who you are helping on your bib! Way cool, like I said.

So check it out! Abby is running a big long race, with lots of hills, and climbs. Wouldn't it be cool to run with a purpose? When you feel like you can't go on any more, or you can't finish the race, you can get inpiration from what you are running, biking, or walking for! You'll be able to identify with these kids a bit more and help them at the same time! I'd encourage EVERYONE to take a look at this site even if you are not an athlete of any type, it is very motivational!

Maybe I'll see some of you at runners roost tommorrow, I mean Tuesday Night!


Home page of Team in Training

Fort collins meeting Jan 25th Tuesday!

Here is an awesome video!

Abby & the TV

Haven't posted many updates lately. Frankly it's because it's a bit depressing really, not really much to update on. Abby, after each treatment is kind of a wreck for a few days, doesn't want to do much and just sits on the couch and watches T.V. All day she watches that thing, eats bunny mac and cheese, popcorn, and sips out of her pink water bottle... she's just not herself. I think this is the hardest part for us right now, now that the shock of the diagnosis is gone, just seeing her sit on the couch staring at the TV. I'd take some pictures and post them, but they would mostly be the same, Abby on the couch. I know it's not a real uppity post but that's just how she's been, for the most part during this induction phase of the treatment. It honestly breaks my heart to see my little girl like this. I know this treatment is the best for her, but what kind of life is that, sitting in from of the TV.? Just making it really, trudging through these days, hour by hour and minute by minute.

Now don't get me wrong, she does smile sometimes, that beautiful Abby smile that lights up the room. And she has been playing with stickers a bit more now... So, I'm hopeful and very glad that this phase only has to last another couple weeks, the thought of another potential full month of induction treatment was making me crazy.

The other day, actually yesterday, Tiffany and her mom did take the girls down to the Bellevue/Watson Fish Hatchery and the Poudre River. I'm sure it was nice for them to get out and Tiffany said that Abby had fun feeding the fish. At one point though, Abby was walking, a novel experience for her lately, and she tripped and then couldn't get up. She just sat there and started to cry... Tiffany picked her up, gave a big hug and cried too. I think it was a "I just want my normal smiley little Abby back" kind of cry. Abby's cry too, was probably of a similar thread, just in a child's understanding, knowing that something is drastically different right now.

Maybe all of this is finally hitting because the whole leukemia thing has finally sunk in. "Hi, my names Mark and I'm a parent of a leukemia kid", (you say, "Hiiii Mark!"). No, but really, it has definitely sunk in, we still feel loved, still encouraged, still hopeful most of the time, and now it's time to keep on keeping on. We don't want to just "make it through" this phase either, we want to be alive in it, we want Abby to be alive in it, we want to live it as a family, no trudging through here! Pray that we do.

Well, Abby will be home soon from her check up in Denver, sounds like she is doing great. Dr. Smith, or Dr. Sniff as Abby pronounces it, said that she will just be a bit weak while her counts are so low, a bit nauseous & tired from the chemo, and moody from the Prednisone... Well that explains it! :) I'm just glad it's 70 out and I can sit on the porch and enjoy the sun, feel it's warmth, the breeze and in it all remember how small I really am.

Rapid responder!

Dr. Smith called today and told Tiffany that Abby's bone marrow tests were very good, under 5% cancer so she is classified as a rapid responder! I'm glad for her that she doesn't have to keep this agressive chemo up too much longer, it's got to be hard on her, she just hasn't been herself.

But, in 2 weeks, on her birthday, she will have her final treatment of this induction phase. At that time she will have anther lumbar puncture (spinal tap and chemo), a bone marrow test again, and another round of chemo. What we want to see from that test is no signs of leukemic cells, that would mean she is in remission and that would be a great 3rd birthday present indeed!

Until then, keep her in your prayers, especially while she is so nutropenic, under 500 ANC, and at such high risk of infection.

Thanks you to everyone that is reading this, thanks for being part of this wild, often stressful but always rewarding journey!

Couple quick updates

No word on the results of yesterdays bone marrow test, should know soon though.

Her blood counts are very low. Total White count = 2300 and her ANC (immune fighting part of the white count) is 100, very low. Normal is around 1500 in healthy kids, under 500 is dangerous because of the possibilities of infections. Since a lot of the drugs that she is taking, and the absence of white blood cells, a lot of the since of infection can be masked. So if she gets a fever of 101 right now we have to go back down to the hospital like we did the other night.

As you can see, things are a bit up in the air and tense right now. Please be praying. We are hoping that her bone marrow shows less than 5% cancer cells so that she will be classified as a "rapid responder". If they don't then the treatment will have to be a bit more aggressive.

Abby is not herself today at all, probably from a lot of factors, one being the bruise left on her back from the procedure yesterday, and probably the fever. Also the first couple days after the chemotherapy can be worse in terms of side effects so that may be it too.

We'll let you know as we things progress, if her fever is still at 99.5 or higher at 1pm we will probably go back down to Denver.

Man, what a wild, uncontrollable ride huh! Like a big crazy roller coaster. I often wish it were different at moments like these, but what do I know really? I don't control the world, or even my little part of it, that's a good thing. So, off to hang on and enjoy the crazy ride, I just hope their isn't a double loop up ahead.

Valley song reflections

Jars of Clay “Valley Song” just started playing on my computer as I was surfing the Net, trying to get some work done for my new Engineering class that I’m teaching this semester. Powerful song, makes me cry each time that I hear it; even more now, I’ve always loved it. Just the other day, on the snowing drive to work, I was thinking I should download it from I-Tunes so that I could listen to it more. Then, in the mail that night, a package from Chaya and Brian came. I hit the button to play it, bumped the skip buttons some how and guess what the first song to play was? Yup, the Valley song. I just started to cry there in the living room, in front of the stereo. The only one around at the time was Anna, Abby was sleeping. Anna just looked at me with a sort of look of confusion or something, her lip starting to quiver in empathy or fear. She is a very sensitive child. I told her that it was ok, and that Daddy was just sad. Then she did the unexpected… She fell onto my shoulder wrapping her little arms around my back and gave me a hug. She hugged me longer than I can ever remember her embracing me before, and right there, in the middle of the living room, with my 18 month old girl hugging me, I cried a bit more. It was a cry of confusion, a cry of hardship in this journey, a “I wish I could take it all away” cry. It was a cry of me wanting her so much to just be ok in the midst of thinking about possibilities that I just can’t think about right now. Most of all though, it was a cry of hope, of me letting everything that was burdening me go and letting God take the load.

That’s a spiritual moment right there, I time that I won’t soon forget; being comforted by your little girl, by God, by song, and at the same time knowing that it’s going to be ok and passing the knowledge on to Anna with a hug.

One of the lyrics of the Valley Song that give me great hope and comfort, and hopefully will you too, is the following:

You have led me to the sadness
I have carried this pain
On a back bruised, nearly broken
I'm crying out to you

Chorus
I will sing of Your mercy
That leads me through valleys of sorrow
To rivers of joy

While we wait for rescue
With our eyes tightly shut
Face to the ground using our hands
To cover the fatal cut

And though the pain is an ocean
Tossing us around, around, around
You have calmed greater waters
Higher mountains have come down

Thanks again to everyone for all of your reflections, comments, support and prayers!

A Personal Encounter

As I read the comments to Abby's blog, to Mark's and my and my dad's posts, and as I see people or talk to them on the phone, I keep hearing "you are doing so great with all of this", "you have such faith", "you have such courage". Don't get me wrong, I appreciate and am truly encouraged by these words. But this morning as I sit and read the Psalms I am struck by my own humanity, my own flaws and my own inability to handle any of this. It is so big. How do you deal with the truth that an all powerful God would allow a child to suffer? And possibly to die? How do you put to rest in your heart the thought that if God is so loving, why would he take a child from her parents? Or at least allow her to suffer? These are are the things that my heart wrestles with. And I know that I can take these hard questions to my Savior, to the One who may not be able to give me answers I want because I can't understand the workings of the universe and why things are the way they are, but I will take them to Him and He will help me get through them and find peace. And He has. I have heard Him telling my heart that this is not what He would have for Abby, or for all of us who grieve. In the beginning there was a plan for glory and for paradise and we chose to doubt God's goodness and because God didn't want to force us to chose Him, He allowed sin to rock our world. It is because of sin that Abby's body is wracked with cancer cells. It is not because God can't or won't fix it. Now He does have the power to heal her right now, I do believe that. That is the hard thing. Why won't He? Well, He has whispered to my heart through this all the reasons He has allowed this. There is a bigger story than Abby's health and our love for her. It is so key for me to lock into this or I will get bitter and angry at God. And I'm not just spitting out sunday school answers here. God has told me that He will use this whole process of Abby's cancer to bring so many people closer to Him. The desire of His heart is that everyone will know Him and chose Him and therefore be able to be with Him forever. Abby's cancer will shine a light into a dark world in a way that her not having cancer wouldn't. I believe that to the depths of my soul. I have seen it already in more ways that I can even list here. It is amazing how the lover of our souls really does turn all things to good. And as for my "courage" in all this, the only reason I am standing and moving through each day with peace in my heart is because I have had the honor of a personal encounter with my Savior. He has rushed in and comforted when I didn't even have words to say to Him. He is amazing. He is so faithful. He loves Abby more than I do. She is His daughter first. He will take care of her. I pray constantly that He will heal her so she can be with us for many years. But I also know that, like Abraham when he walked to that altar with his precious, only son, that You can be trusted. In my heart I know that I will be okay because You are with me. The verse I am hanging onto in this is Psalm 28:6- "The Lord is my strength and my shield. My heart trusts in Him and I am helped." Thank you all for reading this. It is good to share my heart with you all. It is therapy. I know you are all praying for Abby and that is so comforting. You all give me strength to run into God's arms.