Thursday, December 29, 2005

On this day a year ago...

It all started a year ago today. When I boarded the plane last year, on the evening of the 29th, with my little fever laden sweat ball of a daughter I didn't know much, I just knew she was sick. She had that rash, little pin prick sized bruises basically, all over her feet, around her eyes, and up her legs. She was burning up, even with the use of ibuprofen AND Tylenol rotated every 3-4 hours, without it she was up in the 103 degree range. The plane ride was not fun at all. Abby sat on my lap and cooked me from the top. The lady in front of us put her seat back all the way... ahh the joys of air travel. I just remember wanting to be home so bad... what was wrong with my little girl?...

All during the last half of the plane trip Abby's nose started to bleed and I couldn't get it to stop. Everytime it stopped she would cough again and up it would start. I think she seriously lost a lot of blood from that nose bleed, oh man, the memories... We finally got the nose bleed mostly stopped and then somewhere right before landing or right after she started to cough again... hard coughing... on taking my hand away from over her mouth I realized that the moisture on my hand was not just coughing goobers or saliva, but instead blood! At that point I think both Tiffany and I were pretty overwhelmed. She had a big coughing attack again right off the plane. Standing in concourse B, holding my daughter who was now not just sick with a wierd rash but also coughing up blood, we decided to call our doctor. Dr. Samuelson happened to be on-call that night and he helped to calm us and told us what to look for, and what to do if she started to breath rapidly. We had an appointment with him the next day at 10am so he told us to come in the next morning and he would check her out.

Well, to make the story of the long ride home short, we took 1-70 through Denver, the longer route, instead of going home via the country roads that have no hospitals. We put our bags in the living room, put our girls to bed, and fell into the bed ourself too. We were up a lot during the night since no one could sleep much with that cough of Abby's, nothing like the cough you get with the Flu huh! Tiffany and I weren't feeling too good either, we both were getting the Flu from taking care of our little sick Abby....

Well, I guess this story will have to told in daily section for a little bit.. more to come on the 30th and about the 30th last year.... actually, if you want a reminder, just read the first few entries of this blog.... they sure bring back the memories for me!

Thursday, December 15, 2005

Didn't we just do this?

Didn't we just do this?
Originally uploaded by fireater.
Well, Abby's just finished up this months Decadron/Chemo pulse week. We started early, last Thursday night. She wasn't suppose to start this chemo pulse until Tuesday of this week, but they wanted to see her early and Thursday worked great because the Make a Wish Store party was on Thursday too. The Wish Store was pretty fun. Basically Abby got to go off, by herself, into a room and "buy" gifts with her wish dollars. They also had face painting, family photos, hot chocolate, Santa and Mrs. Claus... (what's her first name anyway?), and lots of fun crafts. Abby had a blast going shopping and I did too. It was a good way to make the trip that involved a spinal tap more fun!

And now it is over. It wasn't too bad this time, demanding but not too bad. It is nice to know what the overall tone of these weeks will be like. Abby wants to be held a lot and is generally tired and a bit moody. Also hungry of course and like to rest a lot instead of playing. But that is pretty good really, I'm glad that she tolerates it so well.

Other than that, not much has gone on around here... that is probably a good thing. I like it when it isn't so exciting/crazy around here... ahhh relaxation!

Merry Christmas... drink lots of egg nog for Abby since she can't have any this year.

Sunday, December 04, 2005

Schreiber Baby..... #3

Just a quick post to let all you know, if you haven't already heard, that the Schreiber Clan will be getting bigger in May. Tiffany is about 14 weeks along and is doing pretty good, still a lot of morning, noon, and night sickness, but she thinks that things are starting to calm down a bit.

Anywho, just wanted to let you all know in a really impersonal way, yet efficient way:)

Hope all is well with you and yours

Wednesday, November 30, 2005

Challenges and Triumphs

Challenges and Triumphs
Originally uploaded by fireater.
So for the Milken Award I had to write some essays about different parts of my teaching style, my career, aspirations and such. One question asked me to respond to the "biggest challenges and triumphs" in my life. I thought you all might like to hear what I wrote so here it is.

A year ago, I would have had a hard time finding examples to answer a question like this about challenges and triumphs but life last year has left me well versed in challenges, now I have plenty of examples. Last year, on December 31st 2005, my 3-year-old daughter Abby was diagnosed with Acute Lymphoblastic, Leukemia. To put it simply this has been the hardest and most challenging yet also the most rewarding year of my life.

I don't know if I can explain what it is like to have a child with a potentially deadly illness. I don't know if I can put into words how it feels to hold your cold and clammy shell of a child on the 4th day of a 103 degree fever while a doctor tells you the diagnosis of cancer and then sends you rushing down to Denver all the while wondering if you will lose her before this is all said and done. I can't even begin to express how tough it is to not only watch your child get, but also have to give, chemo "medicine" that make her feel more sick than when she started; medicine that makes her faces puffy, her mood erratic, and her legs so week that she is left only to crawl around on the floor on the rare occasion that she feels like playing. How do you explain to a 3-year-old the concept of cancer? How do you explain to a child why they feel so miserable and why they don't have hair when other kids do? Why they have to wear a mask and can't go to play with their friends in Sunday school anymore?

Yes, I've had difficulties, and possibly will have even more before this whole thing is done. But in the midst of crazy life that I've taken on as normal, I also have seen some of my biggest triumphs. Obviously there is the triumph of my daughter beating this cancer so far, but even more so, I've got to learn more about what true relationships are. I've seen family and friends, students and coworkers rally around me and my family so much in this last year. This has helped me understand what love is in a way that I will never be able to explain or forget. I would say that because of this, the biggest triumph for me personally is my growth in humility. So many people have given so much to me and my family and I will never be able to repay them. All I can say is a simple, humble, "thank you".

Basically, before this happened I would have probably written a response to this question in a way that outlined my professional growth, maybe my job change and the challenges and triumphs that were involved. Now though, it is much different. I see triumphs all over the place. From the struggling kid that finally "gets it" to the love I feel from my friends and family, these are all big triumphs in my mind. But the biggest one of all is when I come home from work, open up the front door, and get to see my beautiful little girls, one bald-headed and one with hair, come running to give me a hug. Just the fact that I get to hold both of my girls in my arms is a triumph that I don't think I will ever fully be able to explain. I still get to hold both of them, they are both still alive, not just one, but both. what could be a bigger triumph than that?

Friday, November 18, 2005

Back to glasses

Back to glasses
Originally uploaded by fireater.
Just a quick update on Abby's appointments this week. Her eye appointment was good, the surgery worked but one of her eyes is still misaligned so she will need to wear her glasses again. The doctor said that the alignment will ussually go away as they get older and the kids will just grow out of it. This misalignment happens to about 1/3 of all successful surgeries.

As for the CHOA appointment, all went well. No spinal tap this month, so she only had a blood draw, and Vincristine, oral Methotrexate, and the week of Decadron plus her normal nightly 6-MP. It sounds like a lot but it is much better than having the spinal tap, a nice "break" if you may.

Abby's a little clingy and grumpy this week but that is to be expected. Hopefully she will be a little better by the time that we go on the road trip in a few days. Well, that's about it, have a great day!

Sunday, November 13, 2005

On to the next pulse

So tomorrow Abby will start her third chemo pulse of the long term maintenance treatment. I'll tell you next week for sure, but it really hasn't been that bad for her or us. She is a bit out of it mentally, probably from the Methotrexate, for a few days but seems to come back to the real world for frequent visits during the whole week. The grumpiness hasn't been too bad either, at least when compared to her 21 day stint on it that one time... That was rough! Her hunger definitely goes up during these pulses and she can be a bit demanding about it but it really has been OK. At least she doesn't get up at night and raid our pantry anymore!

So, I'll have to tell you how it all went next week but I think it going to be alright. Actually for the last day of the pulse, or the day following, we'll be driving in the van up to Utah and then on to Idaho for Thanksgiving. So, if she is grumpy and just wants to eat a lot on the trip that will be fine because that's what people do on trips anyway right?

Abby has a lot going on tomorrow so please be praying for good results. She has an early eye doctor appointment where they will tell us if things are looking good or if they will still need to do something else to help her eyes track correctly. I hope she passes with flying colors. After that she will go to CHOA to see Dr. Smith. She doesn't get a spinal tap tomorrow so that's good! She'll get oral Methotrexate, a Vincristine IV push and she'll start on Decadron. Pretty light day really. They'll do the normal blood work and check her out to see how she is doing overall and that will be it for another month. Much better than going down 1 to 4 times a week like we did in the past!

We'll I better go get the little ones. We hope all is going well in your neck of the woods too. Posted by Picasa

Sunday, November 06, 2005


Sitting here staring at the fire, listening to a bit of George Winston Autum. This stuff always reminds me of living in our old house on Mulberry, where it was so noisy from the constant traffic that we played music all of the time. But the music helps me write and sometimes it's a bit hard to write down my thoughts about my family to a whole group of people that I may know or may not. Interesting stuff this public journaling. Maybe that's why I haven't written for a while. Ya sure, there has been a lot going on in life, but I don't think that is it really. Yes, we've all been sick since almost Abby's last pulse treatment, and yes that award did take over some of my minds thought capacity, but overall, I just don't think I've wanted to write. Both Tiffany and I have been very reflective lately. Reflective mostly about life and Abby.

You see, the end of October, or early November, was when Abby actually got Leukemia. Since it is a blood cancer, they can tell pretty well when the Leukemik cells started to appear and thus started to breed out the normal blood cells by the normal blood cells half life. I don't quite understand it, but it was within these 2 to 3 weeks a year ago. So, we go to the pumpkin patch and though I enjoyed it, in the back of my mind was this little voice saying, "she had it last year and you didn't know". Or saying, "she used to be normal last time we where here". I know weird thoughts but I guess it is just part of the process of greiving the loss of our old life, our cancer free life. A life where we all got to go to church on Sunday morning as a family, a life where we didn't have to worry about Abby getting sick from such a low immunity, just a more normal life really.

I know you all know it, but let me restate it. Life has been hard in the last 10 months for the Schreiber family. Lots of great things, don't get me wrong, but still hard. I think I'm comming to a place though where in a weird way I welcome Abby's cancer in our family because of all of the great things that it has also brought into our life. But just as often, and especially as we approach her diagnosis date, I think about how I'd rather trade all of the awards, money, and anything else that I could just to have my little cancer-free girl back from last year. But that's not how it is, and that's ok. What a joy she is. Maybe we'll pile up some leaves this afternoon and she can jump in them like last year. That will be fun and on perk is that any pictures that I take I'll be able to easily identify in the future since she still doesn't have much hair! What a cutie. Thanks again for checking in on Abby and the Schreiber family as a whole. Posted by Picasa

Wednesday, October 26, 2005

I'm in a Daze... but it's not from Decadron!

This afternoon at a school wide assembly a bunch of people from the Colorado Department of Education gave a give presentation to our whole school. As the assembly went on it became clear that one teacher in the school would be getting an award... a big award. They talked about the trip to Washington D.C., the black tie banquet in Denver and then started to add zeros to the dollar amount of the cash prize. 25, 250, 2500... then another zero, $25,000. Some teacher in our building was going to get 25k for teaching! I started to think who it was going to be... Dr. Madden? Some elementary teacher?... as they rolled out the giant check with the name on it I couldn't believe my eyes... It was my name, Mark Schreiber. They called my name and my body stopped working as hamsters started running faster on their wheels to try to power up my brain. I think my thought process was something like this..."my name was just called".... "there seems to be writing on a giant check up there with my name on it"... processing.... processing..."I think I may need to walk up there"... processing..."everyone is looking at me"... processing... "ya, that really is my name"... it seemed like forever, but somehow the message finally got to my feet and I started to walk towards the Department of Ed. folks to shake some hands.

Shocked is about the most mild way to put this, dazed may be a better term. Me? A National Teacher of the Year? One of 2 recipients in Colorado this year? 25 grand cash award? A trip to Washington D.C. and a black tie event in Denver? Crazy stuff. Slowly but surely it is sinking in. And yes, I think I'm still blushing.

You know just a few days ago I was looking at a large stack of medical bills and looking at our budget wondering how as a teacher I was going to pull this all off. As you can imagine, I was getting pretty stressed too. I try to depend on God in all of this stuff with Abby, but sometimes I just don't do a very good job with that. I was thinking how I was never going to be able to make this work, and then 2 days later this happens. This type of stuff seems to happen a lot and still I doubt God's provision in my families life... So much blessing on our family from friends, from our family, from my school, from all of you that faithfully read my ramble and pray for my daughter... man! I am a very lucky guy.

Thanks again for all of your prayers, support, love and compassion on my family! We definitely feel loved!

Sunday, October 23, 2005

Decadron Daze are over... for now

Just a quick post to let you all know that Abby is done with her second pulse in this Maintinace phase. Her last Decadron (grumpy/hungry pill) was taken this morning, so hopefully she will be more like her normal self tomorrow.

She did almost suck her two middle fingers off though trying to comfort herself during last week and was rarely seen without her blanket. She did seem pretty normal though for most of the week, not too hungry, not too whiney, and played pretty well for a good part of the day before she would tank out. The first few days she did want to be held a lot and then today she also wanted to be held a lot but otherwise she did fine.

See what else... lots going on in life right now for me but on the Abby front it is pretty calm.

Good night and I'll try to post some more info and pics soon.

Wednesday, October 12, 2005

Long Haul

Long Haul
Originally uploaded by fireater.
It struck me last night as I crushed up Abby's nightly medicine and smothered them in chocolate syrup that we are going to be doing this for the long haul. Every night for the next year and 1/2 I'll continue to crush up some little pills douse them with syrup and have Abby take them with lots of water. It not that this make me really sad or even discouraged, just the way it is going to be. Maybe this is a good sign, a sign that things are going so well that I can start to let myself think more about the future without getting sad and discouraged. That's still a lot of crushing, but hey, if it helps her that's what I'll do.

So like I said, Abby is doing really good. She was a little nauseous from the Methotrexate on Monday night and all of yesterday but pretty mild in comparison to what we've seen. We'll start another Decadron pulse next Tuesday along with a spinal tap, Vincristine and all of the other "normal" home chemo meds. I think this one will be a good example of what these pulses may look like, how she'll feel and such, since she won't have had surgery along with it. Hopefully she isn't too grumpy.

On the University Village front I think I've got to the end of the road there for now. I finally got in touch with a statistical analysis person at the Colorado Central Cancer Repository (CCCR) and they were very helpful. Statistically the occurrences that I reported to him are not significant. They get about 200 calls from the public like mine each year and based on several factors they either can classify it as a cancer cluster or not. These instances would just be chalked up to chance on the statistical side.... ya I know it seems like there should be a connection, but I can also see this other side pretty clearly too. If it was a rare cancer, all the same type of cancer, or a higher number then it would start to become more significant but since it was 2 of the most common cancers in kids, ALL and Brain Cancer, it isn't as significant. Also since there are so many kids in that complex it also is less significant because there is a greater concentration of kids than in a normal population sample. Finally, even if it was significant, because of a large number of the same types of cancers, or a bunch of rare cancers, it would be really hard to calculate accurately anything about UV because it is such a moving target, people only live there for a couple years, and then move on.

So, I'm going to talk to the UV manager to see if he will just keep tracking any more occurrences and also talk to CSU to see if they want to investigate it further. For me though, I don't think I can do much more. If there is another case of ALL though... well, then I've got a problem.

Hope all is well with you!

Wednesday, October 05, 2005

More cancer research

So, I've been a little obsessed lately with cancer research based on geography. I've been up too late for my own good searching the ol' Internet for info. And talking to people from University Village (UV) that know a few more of the facts about what has gone on there in the last few years in terms of cancer occurances, especially with kids.

Here's what I've found:
More than one case of a single type of cancer in a small region could still statistically be attributed to chance. One site that I saw talking about statistically analysis of cancer occurances said that it would take 16-18 instances of the same type of cancer in a population of 200,000 people, in the same geographical area, to no be attributed to chance. I'm not sure how large of an area they were speaking of but it does show that these could just be a crazy coincidence. Doesn't seem like it to me, but it could be attributed to chance. I think a lot of this came from a bunch of ALL case in Fallon.

Also I talked to an old long time resident of UV last night and confirmed some of the information from the last post. Here it is:
6 kids total have been diagnosed with cancer while living in UV in the last 4ish years.
1 with bone cancer, age 1? I think
2 with ALL (Abby and the girl that we saw down at light the night). Both diagnosed at age 3.
2 with brain tumors... not sure of their ages but I think both were young.
1 with Lymphoma, age 16 at diagnosis...lived in the building adjacent to us. Not sure of what type of lymphoma but some non spreading type that effected some nodes in his chest, neck and groin.

So 6 kids. But according to research only the same type of cancer can really be linked together for statistical puposes sooo.... hmmm. Very interesting stuff to me.

Anyway here's what I'm doing:
I've called the UV manager to let him know what I'm doing and see if he has records of any other cancer case.
I've contacted the CCCR Colorado Central Cancer Repository... (thanks Julie for the comment on this) and they are going to call me back. These Central repositories are set up in most states now and they track all occurances of cancer based on type of cancer and geographical data. They also will research reports of "clusters" from the general public. So that's what I'm going to ask about.

I'm trying to take this research from the bottom up so that the people at UV don't get a bunch of top down presure with out being in the loop. Actually, I think most of the people at UV have kids and all of them live there so they all definately have a reason to want to help. Hopefully none of their kids get something. Maybe it is just a statisical anomaly? Definately weird though huh?

Other than that obsession of mine, things have been pretty normal. Abby's doing good. Her counts are good, and she has great energy. Her next pulse of Decadron is in 2 weeks as well as a spinal tap, and Vincristine. Until that time, we are just pluging away and having fun.

More news on all of the Schreiber's crazy life to come soon... and yes it's just gonna get crazier.

Tuesday, September 27, 2005

Light the Night, and a Wierd Encounter

I almost forgot to post about the Light the Night event that we went to on Friday night and some things that make you go... Hmmm.

So, we went to the Leukemia and Lymphoma "Light the Night" event and walked around Old Town Fort Collins with lit up balloons to help make money for the Leukemia and Lymphoma society. It was a good event all in all but there was this one weird thing...

We were getting registered when Tiffany and I recognized a young couple who also used to live at UV, University Village. I went over to ask them if they had lived at UV and the first thing she asked me was, "did you live in the 1600's?" I told her yes and asked her about her daughter, who seemed to have the typical round puffy cheeks of a kid with cancer. Her daughter, also has A.L.L. and also lived in the 1600 campus of CSU's Married Student Housing in UV. She proceeded to tell me of several other people who had contracted Leukemia, Lymphoma, and other cancers, at least 4 of them kids, all in the 1600 block of UV, 8 total.

So, basically that really sucks. I know that I couldn't have know about that when I signed up for graduate school and moved our family into UV... But it still stinks. And it stinks for all the kids that are still living there. I wonder if anyone will get it this fall? To me, there is an obvious link. There is no way in my mind that when 3000 kids a year get A.L.L. that 2 of them would get it 2 years in a row and in the same building complex!

So, I don't know what to do from here, but I don't see myself being able to let it go. CSU has to have good records of everything that has been sprayed around there, everything that those old buildings are made of, and much much more. It seems like a great opportunity to help figure out what may be one of the causes of Leukemia and Lymphoma.

Anybody have any ideas of where to start?

Eye Follow Up Exam

So Abby's doing really good lately, still not sleeping through the night yet, but we'll keep working on that one.

Tiffany and her mom and Anna, took Abby down to see the eye doctor early Monday morning... Anna drove. Just wanted to see if you were paying attention. Anyway they all went down to see Dr. King. He said that everything looked perfect for this point and now it's just up to the brain to snap it all back together. We won't know if the brain has started to drive both eyes, man everyone driving in this blog entry, for about another couple months. Until then Abby won't need to wear her glasses and in a week or so her eyes won't be so bloodshot either. So hopefully she will have straight eyes from now on!

That's about all on the medical front until our next appointment on Tuesday next week.

Friday, September 23, 2005

Out of the fog

Just a quick FYI to let you know that the Decadron fog has lifted in the Schreiber household and Abby has been reported to be in good spirits.

I came home from work yesterday not to find her waiting by the door for my like a lost puppy, but instead playing with Anna. Pretending to draw her outline on the floor like she must have seen on one of our videos. They giggle and laughed all the way through dinner pretending that their rice was some different food... "you want some potatoes Anna?" Anna replies, "You want some green beans Abby?" and on and on... They both were almost crying with laughter... Does my heart good!
Just nice to know that Abby can be almost back to herself, still a little tired, just a couple days after some pretty major surgeries and chemo treatments.

Hope all is well in your world too ;)

Wednesday, September 21, 2005

Abby's doing "OK"

So, Abby had her last dose of Decadron this morning so hopefully she will be back to herself in a few days. She was pretty sore the first day home, Saturday, and the rest of the week she has been doing so so. Some days have been pretty good, not too whiney, and not super hungry either. Most afternoons she has been pretty grumpy and very clingy, she would be content just being held all day long. Often she just sits at Tiffany's feet while she does the dishes or fixes a meal. Today, I found her sitting on the rug by the back door waiting for me to come home to hold her. So, hopefully she will feel better soon.

At least she has been sleeping well, for the most part. She's only really had one terrible night, the rest have been pretty good.

That's about it, not much to report, just a tired sore little girl that wants to be held because, as she says, "I'm just not feeling good" and, "I'm just having a hard time"...

Speaking of sleep... I better get some rest too.

Sunday, September 18, 2005

5 day forecast

5 day forecast
Originally uploaded by fireater.
Sunny skies were overhead all week long last week so it must be time for a change. A sudden cold pressure system, attributed to Decadron, (i.e. the grumpy pill) moved in quickly on Friday and seems like it will be hanging around for the next few days.

The forecast for all 4 remaining days is as follows:

Sunday---Partly sunny with sudden intense Thundershowers showing up only to vanish seconds later

Monday---Afternoon looming clouds with a chance of the demands for noodles to fall out of the sky

Tuesday---More Thundershowers, often intense in nature, followed by high gusts of a whiney sounding wind that seems to sound like my daughter asking for food... must just be the wind.

Wednesday--- Ever changing weather, suggest wearing "layers", as hammock sitting weather may be on one side of the yard while gusty winds and rain engulf the other side... wear sunscreen, SPF 82, and bring your umbrella.

a.. Thursday--- Weather should be tapering down as the Decadron front moves out to sea... only to gain strength for another visit in 3 weeks. Sun should come back to the region as will the presence of my kind, sane little girl.

Ahhh.... the joys of Decadron!:) Pray that the weather stays clearer than my forecast predicts... hopefully I'm a bad weatherman.

Till another break in the weather.

Saturday, September 17, 2005

Home and Healing

Well, we got home earlier than expected last night, around dinner time. Our good friends the Maddocks had dropped off dinner and it was waiting for us. I (Tiffany) sat with Abby while Mark got it all ready. She did really well. She doesn't do well with one of the relaxing meds they give before going into the OR so Mark went in with her, all gowned up. He said she was just chatting away with everyone and asking about what everything was. Then they put her under and he laid her down on the bed and left. 3 hours later we saw all the docs (in the meantime I took Anna to the zoo, she had a ball) and everything went fine. She has a new mediport on the opposite side (left) and the broviac site is healing without stitches. Her eyes are pretty red and bruised but will look worse than they feel for her. She also had a spinal tap and two doses of chemo. She came out of the anisthesia pretty confused and upset that her eyes were draining and she couldn't see but once we got her into the van she fell asleep and did fine for the drive home. Anna sang us Barney songs and a few made up ones of her own about flushing the potty the whole way home so we were kept entertained! Thanks for all the prayers! The next few days will be filled with her getting used to her eyes, healing from all the pokes and prods and starting the side effects of the steroid and other two oral chemo meds we started yesterday for this new maintenance phase of her treatment. So pray for lots of patience for us and that no infection develops in her eyes, there's a 10% chance of one. But all her blood work is excellent right now so that's good! Oh, and the doc said that the broviac needed to come out, it was hanging by a thread and looking pretty, well, lets just say it wasn't as clean as when it went in!

Thursday, September 15, 2005

Surgery Tomorrow (or today, if it's Friday when you read this:))

I've know this was coming. I've known it. But once again, over the head it has hit me.

Tomorrow morning we will make our trek down to Denver again for another start of yet another phase, the last and longest phase, Maintenance. A rotating cycle of redundant treatment that will last about a year and a half. We'll start it all off as I said in the last post with a barrage of surgeries, chemo treatments and oral meds at home... just to keep things exciting.

And oh yes, don't forget about Decadron! Grumpy Ville, here we come. Hopefully it will be a bit better this time... but I'm not holding my breath. I think the hardest part of these time is the fact that she is always doing so good right before them! Swinging, playing, laughing, running... And then tomorrow, things will change and she may be back to sitting on the couch sucking on her fingers, smelling her blanket and asking for lots of pasta dishes to keep her satiated. Just not really looking forward to it if I may say so.

But on the flip side, we have had a great few weeks and this will be mild in comparison to Delayed Intensification! Even if it is tough, it should only be that way for about a week. Once the Decadron wears off, she should bounce right back. And it's fall, our favorite season! So, once again we'll take it in stride... but that stride still concerns me.

I was talking to a friend at work and saying something about how this whole treatment has felt like a really long run. The first part you are just pooped but then you kind of get in the groove, get your second wind and feel pretty good, then further along, you really feel good...still hard but you're just in the zone. That's were I feel like I am lately, just came off a big hard run up a hill but I'm still running, the whole family is actually, and yet I feel really good. My concern though is that somewhere in this next part of the race, the year and a half long part, that I'm gonna hit the wall, bonk out, my legs finally failing me...

That's my concern, that's my metaphor, that's my families' life right now.
Pray that things go well tomorrow, that Abby does as incredible as she has in the past, and that our families emotional, spiritual, and physical tanks will be filled up for the journey that still lies ahead!

Thanks for all of your comments, prayers, encouragement, notes, meals, financial help, friendships, and even for taking time out of your day to read my often disjointed little rambling about Abby, my little trooper of a girl who has been through more than I'll ever be able to comprehend... and still, for the majority of the time, has a smile... A BIG, BIG smile on her face.

Friday, September 09, 2005

Lots happening in 1 week

Lots happening in 1 week
Originally uploaded by fireater.
Well, we are finally going to start... and start with a bang I may add! Not only will Abby start all of her medications for day one of this new long phase but she will also have a couple surgeries and a spinal tap! Yikes! So pray for next Friday.

So like I said, lots will be going on next Friday! Abby will have multiple doctors working on her for all her various aliments and treatments. Basically we'll check here in at 10am and then at 12 noon it all starts. First Dr. Blinman will take out her Broviac and replace it with a Med-o-port, just a different style access port for taking blood and administering chemo. It will be under the skin instead of a tube hanging out of her... I wonder if she'll miss her little "tube-e"? Next goes Dr. Smith who will do the spinal tap for the start of this long final phase. Finally Dr. King will go , who will do a corrective operation to fix that wandering eye. Actually he'll be doing surgery on both eyes to straighten her all out. Once she comes out of surgery with her new port and straightened eyes (and is awake enough to leave) we'll carry her over to Dr. Smith's office, CHOA, and she'll get an injection of Vincristine. And, if that all wasn't enough, when she gets home she'll start her new phases meds which will include 5 days of Decadron "the grumpy pill" and nightly 6-MP..... Whew that's a lot of stuff!!

So, as you might imagine, we're a bit anxious about all of this stuff but hopefully we'll warm up to it all by next Friday. It actually does make sense to do it all on the same day instead of going down multiple times and it is really nice that she can get her eye done and the Broviac at in one visit! Switching the Broviac to the Med-o-port will be the best for her in the long run, less chance of infection and no tube hanging out of her chest, but it also means that whenever she has to get blood or receive chemo she will have to get an "owee". We don't like the idea of her having to get a needle prick every time we go down to CHOA but also she has had so many blood infections that it just seems like the best thing to do at this time. If we wait until she gets another blood infection she would have to get 2 surgeries, one to take it out and then wait two days for the infection to clear until the Med-o-port could be "installed"... sometimes I feel like my daughter is a car or something, always "looking under the hood" and installing new devices... weird.

Anyway, lots will be going on next Friday. The recovery time is pretty quick for both the eye and the implant and the Decadron is only for 5 days each month... I'm sure I'll really be looking forward to those weeks huh? Who knows, maybe she won't be grumpy or ravenously hungry on such a short dose... I guess we'll find out soon!

Friday, September 02, 2005

Who can really say when she'll start...

Well, I thought we'd be going down today to start the Long Term Maintinance but nope, still didn't pass. Actually her counts were lower, 225 ANC from 250 last week. The other components of her blood look good though and have steadily been bouncing back. The doctors said not to worry and that it may take a while to have everything bounce back up to normal. So, the plan is to start now on Tuesday, but we have an eye appointment on the same day so I'm going to see if she can start on Wednesday instead or just later in the day on Tuesday. I'll straighten it all out with them soon, but if she still doesn't qualify on Tuesday then I don't know what they'll want to do.

She seems to be in good spirits, and it is nice to not have to give her much in the way of medicines too.

Well, stay tuned, and thanks again for all of the prayers, thoughts, comments and calls... and for just for reading too!

Tuesday, August 30, 2005

Didn't pass again! :(

Well, Abby didn't pass the blood count requirement to start the next phase, she is still to low. They will test her again on Thursday and hopefully she will start on Friday. If she doesn't pass, they will most likely schedule a bone marrow aspiration again to check things out further. So, pray that she passes, I really don't want her to have to get another bone marrow test.

I really hope that it does come up soon, kind of worries me that it isn't... but I won't go down any those roads unless she doesn't pass on Thursday.

She's been doing relatively good in the 2 weeks since she's been off treatment, gets tired sometimes but really does good for having such low blood counts. Once her hemoglobin comes back up we are planning on going up the canyon a bit to see if any leaves have started to change up there, that is always a pretty time of year for the mountians.

Anyway, I'll write more on Thursday when we know the plan.

Thursday, August 25, 2005

On to the last phase... on Tuesday

So, Abby didn't pass on Tuesday, in terms of her counts, so she will have to wait until next week to start her final phase. That is fine with me, it is nice to have another little break, if you can call it that. She had a bit of a fever today, so pray that it isn't the beginning of another blood infection. It seems like every time she starts to get a low grade fever, something is brewing inside of her. She still in neuotropinic, under 500 ANC of her immunity count, so we have to watch all of that stuff closely. Also because of her ANC we can't take her out to crowded places or around sick people... that means once again we are hermitized for a bit. Hopefully her counts will come up soon and we can once again rejoin society as normal folk... for the most part anyway :)!

Other than that, things are still rockin' and rollin' around here. Anna decided that she wanted to become a big girl and use the "potty" instead of diapers and so we are on the potty training road... hopefully it will be a short trip. I'm getting more into the groove of the school year and am looking forward to Labor day weekend already! Actually the kiddos are fun, and I enjoy my classes, just long days compared to the flexible summer.

Off to sleep, I have to get up at 6am again tomorrow:(

Saturday, August 20, 2005

Happy B-Day to Abby's Mom:)

Happy B-Day to Abby's Mom:)
Originally uploaded by fireater.
Today is my lovely bride's Birthday! 33 years old! How crazy is that huh?! We still feel like kids except now we have kids too! Weird. But it is true and so we will celebrate!

One thing that has really hit me during these last several months of Abby's treatment is how much I love my wife. She is an amazing woman, let me just tell you that. In relation to Abby and Anna, she is the best mom around. As my wife... hands down... the best I could ever wish for!

These last few months have been stressful, yes, and through it all Tiffany has been there to hug, cry with, and talk to about deep things, life and death, God and who He really is, how spirituality and life's hardships really line up, and on and on... Lots of tears have been shed, voices been raised, and deep thoughts have been thought until my mind seemed too full to function... and through it all, my wife has been there, in-the-trenches, if you may, with all of this care our family.

I just want you wish my wife, yes you Tiffany Schreiber, the brightest happiest fulfilling birthday that you've every had!

Sunday, August 14, 2005

Still doing relativly "good"

Still doing relativly "good"
Originally uploaded by fireater.
You know people often ask me how Abby is doing these days and the reply I get to give them lately is "really good". That response is a little misleading in some ways though. I mean yes, side effect wise... she is doing outstanding, no mouth sores, no major hospitalizations, no heart problems, the list goes on and on. But I think I've also gotten used to some crazy things that I see as pretty routine. 2 blood transfusions in the last couple weeks, a extremely low platelet count last Thursday that made us drop everything and run her down to Denver, the effects of the last low platelet count expressed in her crooked eye gaze from that retinal hemorrhage last winter, not being able to take Abby out to public places until her counts come back up... Oh I could go on and on, but the point is that I just consider these medical procedures, like monthly spinal taps, routine and normal. Kind of weird what we can get accustomed to huh?!

Anyway, now that we are getting a bit more rested and normal around here, I'm starting to think a little bit more about how the whole DI experience effected us as a family. And all in all, I think we came out relatively unscathed. Medically, yes Abby did great! Anna, has gotten a little more demanding of our attention, expressed in very commanding renditions of her favorite songs... loud renditions, and any silly thing that she can do to draw our attention that way. Tiffany and I have faired well too, mostly just glad to not be soo tired anymore and very ready to be able to take Abby back over to our friends house and such, back into the world. We love our house, but what joy it would be to sit on our other friends couches with our girls again. Sounds kind of funny but we definitely miss that interaction.

Other than above, things have been relatively "normal" in their own sort of way. We did take a little trip up the Big Thompson Canyon and then up towards Glen Haven to play near a smaller creek. The girls loved it! That is what the picture above is from, it was a great time, we'll have to do it again before the summer slips away.

Thursday, August 11, 2005

Worn out but winding down

Worn out but winding down
Originally uploaded by fireater.
Worn out

You know I'm glad it is starting to get more normal around here but man, talk about being worn out by it all. I'm glad Abby doesn't have 2 Delayed Intensifications (DI) like a lot of kids do... for her sake and mine. Seriously I feel like I have been in a fog for the last few months, well, maybe more of a tunnel. We've just been so focused on all the Abby things to do and take care of plus just trying to continue to do life, which on a normal day with 2 little kids is probably challenging anyway. Then add on all the beginning of a school year job stuff and bam, we suddenly became a very crazy family. But, like I said, I think it is starting to wind down, and wind down to a more reasonable level for the long haul.

Let's recap. Abby is almost done with DI and has done very well in the side effects category with very few to mention. It looks like the 3 weeks of intense antibiotics and Vanco/Heparin locks in her Broviac tube took care of it. If she doesn't get anymore infections then we won't have to be in a hurry to take it out. Abby still has no, and I mean NO immunity protection, her total white blood cell count is still around 300 (normal kid = 15000 I think) and her ANC, immunity component of her total white count, is unreadable. She's only needed one transfusion so far of packed red blood cells and 1 of platelets. If she goes any lower on either though, they'll have to transfuse her again. Currently her red count is at 8.9, normal is around 15, and platelets are around 30,000, usually 150,000-200,000 is normal. So thing are looking up but she still is a bit "in the woods" you might say.

With her immunity gone, we don't get out much unless the place is really empty. Last night we went to the ice cream store, ordered and then went and sat outside. And this last weekend we went a little bit up the canyon, not too far up with so little hemoglobin (oxygen carrying red blood cells), and the girls got to get out and played by a little creek, that was a lot of fun. So, as you can see, things are getting much better.

Let me also fill you in on the future plans... DI finishes on the 23rd I believe. From there they let her counts all come back up for a week or more and then start her on the Long Term Maintenance (LTM). LTM will last, well a long term of time, a little under 2 years. I'll try to post the image of that road map, but basically it is a reoccurring rotation of nightly meds, monthly or maybe 6 in between spinal taps, some IV chemo and monthly or more blood work, plus check ups. Also in the beginning of this phase she will be getting her Broviac out and a Medoport put in. This device is also an access port but it hides under the skin and to access it she'll get one "oweee". We are still deciding what way we want to go with this issue. Finally, she will be getting a corrective surgery for her eye once her counts get high enough to do that. The nice thing about all of these surgeries is that if she doesn't have any blood infections she can have them done all at the same time, eye, Broviac out, Medoport in, while she is under general anesthesia.

So, that's the scoop.

Friday, August 05, 2005

No transfusion needed today

Just a quick note to let you all know that Abby went down to Denver today ready to get another blood transfusion and didn't have too. Her counts were high enough from the last transfusion on Tuesday so back home they come.
Anyway, she's doing really good and has been mostly back to her old self, laughing, playing, arguing with her little sis Anna, and just being plain old cute!

I'll try to post some pictures soon.

Tuesday, August 02, 2005

Blood Transfusion

Blood Transfusion
Originally uploaded by fireater.
Hey all,

Abby went down for her morning chemo appointment today and was sent over to the hospital to get some blood/platelets transfusions.

She should have just started getting the platelets and they'll take an hour to go in. Then she will have to wait a bit and then they will start the blood, packed red blood cells to be exact. The blood will take about 4 hours and then she can come home as long as she doesn't get a fever. When kids are neutropenic and get a fever they admit them for the night and often when kids get blood they will get a fever just from the transfusion process, so, she may stay overnight. We'll just have to wait and see.

Other than that she is doing fine, her counts are low obviously, but all in all she is doing really well with the treatment. She is also off Vancomyacin for now, just finished this morning. Hopefully she can stay off of the antibiotics because that is a lot of work and probably is not the best for her body. I'll post more as I know more, or maybe I'll just go to sleep instead. :)

Saturday, July 30, 2005

Reds are Meds.

So yes, this is a picture of our calander for this week. All the red things are Abby's meds... Crazy huh?! Abby's doing great with all though, I don't know if we could say that for Tifffany and I but we're doing OK. Here's the typical daliy schedule for a few more days and then we'll see if we have to keep up the antibiotics or not.

6am- hook up Abby to Vancomyacin
8am- unhook her, and put in a Vanco/Heprin lock (in her Broviac)
8am-Kytril (to counteract nausea)
8am after breakfast... Zantac
8am after breakfast... Mouthwash and Nystatin (to keep mouth sores at bay.)
12pm after lunch Mouthwash and Nystatin
2pm hook her up to Vanco again
4pm unhook her and give AraC
4pm lock her with Vanco/Heprin
6pm Zantac
6pm mouthwash/Nystatin
7-8pm give her 6-TG(hour after food, no milk, no citrus... they make it not work, milk, or super potent, citrus).
10pm Hook her up to Vanco
12am unhook her and lock her with Vanco/Heprin

I write that all for my memory as much as I do for your information. Lots to take in and do huh. But as I said, Abby is doing really well with all. She is playing much more with Anna, walking around pretty good, and is very giggly. She doesn't want to leave the house much but neither do we after 3 trips down to CHOA last week. They ended up putting her on a second Antibiotic on top of the Vanco for a couple days last week becuase she had a little fever and they wanted to make sure it wasn't the blood infection. She's had this blood infection for pushing 3 weeks now so they are really trying to knock it out for good. The crazy thing is that she might not have had any blood infection, it could all just be contaminates from handleing it but they don't want to take any chances, so they treat it and keep culturing the samples.

Other than that, there really isn't much to say. This is just our life now, and it's pretty demanding. But the high pace is offset by having my smilely little girl back and that is worth it all.

Off to drink more coffee.

Tuesday, July 26, 2005

Starting DI, round 2

Hey all,

I took Abby down to the eye doc yesterday and we stopped by CHOA to get her blood counts. The machine said that she wouldn't pass, ANC 400, but when they did the manual count under the microscope she passed with a 748! Weird, I was sure that she wouldn't make it especially after they ran it on the machine and it came back with a 400. Anyway, she needed a 750 to start the 2nd part of Delayed Intensification (I put the roadmap here that should be big enough to read) so she will start today.

Today on the menu is: 1 Spinal tap with Mexthotrexate chemo, 1 dose of Cyclophosphomide, 1 dose of Ara-C, and 1 pill of 6-TG... to counter the side effects of these chemo drugs she will also get Kytril for nausea, Zantac for her stomach, and Nystatin & Perodex 3 times a day as a mouth rinse. They sure know how to load these kids up huh!? Well from here on out the mountain of meds should be substantially smaller.

Please be praying for no side effects on these drugs as some of them have pretty scary yet uncommon side effects such as making the patient sterile. Here is a good link for side effects of the common Leukemia drugs if you want more info.

As for the hair situation, yes it still is gone, just some rouge hairs left looking for company. Actually she has lots of peach fuzz. If you want to see what she looks like click here. It's amazing how quickly it all came out and yes we're still getting used to her new look. Once her cheeks go down a bit and she can smile with out her cheeks closing her eyes that will be better too. Not much to say about her eye from the doctor. He'll see her in 6 weeks and then we'll decide on surgery then, most likely they'll do a surgery.

We'll lots to do on day 29! Hope all is well with you.

Sunday, July 24, 2005

Hair today, gone tomorrow

Hair today, gone tomorrow
Originally uploaded by fireater.
Well, actually that would have been a better title a couple days ago being that Tiffany finally cut off what was left of her hair yesterday morning.

I've know it was coming and during the last big round her hair definitely thinned out a bunch but I still wasn't looking forward to it or was I prepared for it all to just come out so fast. Basically it took about 24 hours for her to go from looking pretty normal in the hair department to real sparse. It just came out by the handful, the weirdest thing really, kind of made me nauseous, I don't know why, it just did. I didn't want Tiffany to cut it at first but by Saturday morning I decided that she would probably look better without the remaining hair since it was so spotty.

The first night that it came out she was just bald on the top with the mullet look in the back, she decided to dress up. She got this little skirt on, and some beads, put on a bikini top over her shirt and some clip-on ear rings. I was working downstairs when all of this was going on and when I came upstairs and saw her I couldn't help but laugh. She was all decked out as pretty as could be with her wispy hair just smiling with how beautiful she has made her self. I didn't tell her but all I could think in my head was that she looks like a bag lady... with Gollum's hair.

Actually it is great to see her all lit up and trying to be all beautiful, dressing up, playing, laughing and smiling more it really does offset the fact that her appearance has changed so dramatically. Those are the things that make me see my little Abby more. Past the chubby cheeks, the wandering eye, and her little bald head I really do see daughter more now and that is a great thing. It is amazing how Decadron can change not only Abby's appearance, but also her mood, emotions, and metal functions so much. Crazy stuff. Her face and belly will get more normal looking in the next couple months but she will still have quite the puffy, "moon face" as they call it through the term of her treatment since she'll be on Decadron for 5 days out of each month.

As for us, we're tired. Abby still isn't sleeping very well at night. Actually the last couple nights I found her sleeping on the floor our room or the guest room in the middle of the night. I don't quite know why but I think she is just sore and achy and is having a kind of Decadron withdraw since she wasn't weaned off of it like is often done with these drugs.

Well, speaking of tired, I'm gonna go take a nap. I'll post a puffy-faced-bald-headed picture for you all soon... you have been warned. :)

Thursday, July 21, 2005

20,000 hits prize

20,000 hits prize
Originally uploaded by fireater.
Last week when I saw the total hit counter fast approaching 20,000 total hits I thought that I should do something special for the person that made the little hit counter hit 20,000. I-Tunes does it, the customer that downloads the 100,000 song or the 200,000 song, etc.. gets an i-Pod and a bunch of free music. I think the millionth song download is coming up and that person get a ton of stuff! Anyway, I don't make I-Pod's and there are no customers her at this site but still I thought I should do something... So what would I do? I thought all morning long, well for as long as I could concentrate on it anyway, at least a minute... I thought of a bunch of ideas: maybe give that person the last Decadron pill that we have left over, or maybe a chemo spill kit, or a loc of Abby's hair since it will all come out anyway. Those all seemed too weird, or sad, or just plain boring so I got another idea. Whoever hits on the 20,000 has to... I mean gets to give me a shoulder massage! Much better idea indeed.

So, I was all ready to implement this fabulous idea and post this message above when I decided to go look to see if there were any comments this morning. I opened up the site, clicked on the comment and BAM!.. Guess who was # 20,000?

Yup, me... So here I sit trying to type with one hand and give myself a lousy shoulder massage with the other. Oh well, it was a good idea. I'll just have to wait for #30,000.

So on the Abby front, she is much more pleasant today. The Decadron must be wearing off because she is much less hungry and a lot more playful/smiley. That is a great thing! Her hair has been falling out and today it started to come out in clumps so, probably by my next post I'll have a bald little girl... It's about time really, most kids loose it the first month or two so it is pretty amazing that she still has so much of it 7 months into the treatment. Still stinks that she has to lose it at all but I'm sure we'll get use to it in time. Otherwise things are relatively calm, especially in comparison to the last 3 weeks. We'll get more info on what to do about her lazy eye on Monday, most likely surgery, and we'll also see if her counts are good enough to start the next round of chemo on Tuesday.

That's about it... I've got to go and finish giving myself a back rub. :)

Monday, July 18, 2005

My Chipmunk-Cheeked Girl

My Chipmunk-Cheeked Girl
Originally uploaded by fireater.
Hey all,

Here's a recent pic for you all. Ahh the wonders of steroidal drugs. Not just grumpy and hungry but "moon face" too. That's what they call it, the cubby cheeks and Buddha-belly, comes from water gain and salt retention... crazy stuff. Anyway, it will gradually go away and she will look more like her normal cheeked self. She'll still have a bit of the puffy cheeks through the course of the treatment since she will still be on this same steroid, Decadron, for 5 days each month.

Wanna hear the good news????

She is done taking the grumpy pill tomorrow evening! Yippee, day 21 is finally here! And if that wasn't enough good news, our doctor called today and told us that we can take her off the monster antibiotic, Vancomyacin, and switch her to another more narrow spectrum one that we only have to give her ONCE A DAY!!! Yippeeee!!! We have to give her the Vanco 3 times a day, every 8 hours and it takes 2 hours to infuse it via her broviac so.... guess how much consecutive sleep we get while doing that?... Ahhh... I see you all paid attention during that math class, yes, you are correct... 6 hours... minus the snacking and potty breaks of course:) Actually she has been doing good on that front too. Only really wakes us up maybe once a night or not at all. She still goes to the bathroom her self and the big bowl of cheerios seems to last her through the night. The only thing that I occasionally wake up to is the sound of loud crunching at 2am in the adjacent room:) I just chuckle and fall back to sleep.

See what else?... Still a challenging pace but we can see the light at the end of the tunnel. Tiffany's mom Vicky is leaving on Wednesday so we will miss the help but hopefully we are through the most demanding times. Hey Robin... Thanks for loaning us your wife for so long. It has been sooooo needed and very helpful! Dr. Smith said that they will probably pull the Broviac after we are done with DI, if she can make it through without a ton of infections. Abby's eye has been more crossed since the start of DI, probably since she is weaker and more tired but I'll have to ask the eye specialist why when we go next week. The tentative schedule for the eye is to do corrective surgery after DI is finished. So, looks like lots of surgeries in September and November... Oh well, one day at a time.

I think that is about it. Just taking it day by day. Some days, like yesterday and today, she does really, really well. And some days are a bit harder. She has a week off of chemo now so that will be a good thing for her, but also this is the danger zone and Dr. Smith told me not to be surprised if she gets admitted again in the next couple weeks. I

In general though she's doing great. She's been playing a little bit, mostly with her kitchen and food toys and watching a lot of videos... she really likes the Blues Clues Snack Time video! The only problem letting her watch is that she starts asking for everything that they make! I can't keep up with the video when they have something new every 5 minutes! :)

Well, there is the long and short of it. I'll have to write more later about how she makes these little noises when she eats... kind of reminds us of rain man... and how she pretty much mumbles constantly about everything and anything that is going on around her. All I have to say is Chemo is some pretty strange and often disturbing stuff!

Bye for now.

Saturday, July 16, 2005

Back from the Hospital

Just a quick note to let you all know that Abby was discharged yesterday about 4pm and is doing good at home.

She is on Vancomyacin and is still very hungry but all in all she is doing fine. Her face is getting very puffy again from the steroid drugs but we are done with those on Tuesday!!! Yippee!!

I'll write more as I have time.

Wednesday, July 13, 2005

One of the 70%...

So Abby is now one of the 70% that gets admitted to the hospital during DI. Tiffany just took her down today after they did a blood culture when Abby was down for her chemo yesterday. They have Abby on antibiotics again and from what I've heard they are checking to see if this is the same bacteria infection that she has had before. If so then they may have to do surgery to remove her Broviac line encase it is laying dormant in the line.

So, that's all I have right now. I'll try to post as I have time and access to the Internet. Please be praying for her infection to clear up and for her not to have to get her line removed.


Monday, July 11, 2005

Ravenously Hungry

I'm still in California for the TEAM conferance with the Youth Leadership Institute at APU but I wanted to give a little update as to how things are going on the Abby front.

Abby is still relatively healthy, grumpy and hungry but healthy. Actually VERY hungry in the last 2 days. The request for food has grown and now is even at night. Being a very independent little 3 year old, Abby decided to solve her own problem of hunger the other night. Late into the night and early in the morning she was found roaming around the kitchen and helping her self to different food items in the pantry. Since that wasn't exactly what we wanted to be the norm in our house and since it was an exhausting hight Tiffany decided to put up the baby gate last night and provide snacks in a basket for Abby to eat through the night.... That worked to a point, but the basket still had to be refilled a couple times during the night with snacks.

Now, Abby is a good little girl that has been to taught to share as any child would be at her age. And she is getting pretty good at it too. For instance, last night Abby decided to share her snacks with Anna. Makes sense you know, sharing is a good thing. So..... Tiffany and Vicky found Anna in the crib this morning with various snacks strewn about. Popcorn, rice crispies, and chocolate cookies were probably a lovely breakfast for Anna but probably also a pain to clean up out of her crib.

So, be praying for energy for my wife and mother-in-law while I'm gone. Pray that Abby won't eat us into the poor house, and that she continues to to well with the chemo effects.

Abby's 3rd chemo week is coming up on Tuesday and for the next couple weeks she will be, as our doctor says, "in the danger zone" for this phase. The point when 60-70% if kids are admitted to the hospital. Please be praying that she will be one of the 30-40% that does not have to go in.

Thank you once again for all of your comments, prayers and encouragement!

Wednesday, July 06, 2005

Noodles... Lots of noodles

Noodles... Lots of noodles
Originally uploaded by fireater.
Well, yes here appetite is back! For a brief glimpse into our life, I give you the breakfast menu.

7:30am Milk
7:45am Request for "Real Pancakes".... "with syrup"
8:05am Pancakes served... with syrup and butter
8:10am Bananas ordered and served
8:15am More bananas... "in the peel please" (at least she still is polite in her demands:))
8:20am Done with pancakes, asks for noodles... Penne pasta to be specific.
8:22am Finished convincing her that Spaghetti Noodles were already cooked and would be better.
8:25am-8:35ish Abby eats 3 bowls of spaghetti "with sauce... without tomatoes please"

At this point I ran and errand but when I returned at around 9am, I found her seated at the table again eating....

9am.... Ice cream, Haagen-dazs of course! Mummmmmm. Breakfast of champions really!

I've been out since then but I'm sure she's found some more stuff to eat. That is actually a good thing really, she needs to gain some weight. She's been about 28-30 lbs since she was diagnosed and we don't want her to lose any more during this phase if possible, so on I'll go being a short order cook and letting my child have her 9am ice cream rendezvous....

The only problem that I see is that I end up eating everything that she "orders" and then doesn't want... Man this is going to be worse than the "Freshman 15" for me! I guess I just have to start throwing food away... so hard for me to do... Oh well better than buying all new clothes. :)

Out for now.

Sunday, July 03, 2005

I just like this poem


R.S. Thomas

I have seen the sun break through
to illuminate a small field
for a while, and gone my way
and forgotten it. But that was the pearl of great price, the one field that had the treasure in it. I realize now
that I must give all that I have
to possess it. Life is not hurrying
on to a receding future, nor hankering after
an imagined past. It is the turning aside like Moses to the miracle
of the lit bush, to a brightness
that seemed as transitory as your youth
once, but is the eternity that awaits you.

I found this poem today while I was reading some blogs. I really like it. I like that it give such a good image of living in the present. I like that it reminds of our heritage, of God's promises to our forefathers, and to us.

I so often hurry on to get through things, to the future... The future must be better right? If I'm not longing for the future, then I'm just as often "hanker after an imagined past." Oh how we twist the facts in our minds of the future and the past always thinking the grass is greener somewhere else. That God was so much bigger in our lives then or will be bigger in our lives in the future... But what about now? What burning bushes are just outside of our view if we would stand still enough to look around and find them?

So yes life is still demanding with my moody little girl, often so much that we barely get to sit down... exhausting. I live my days lately longing for the future and the past... anything but the present. Nap time, bedtime, morning coffee... these are music to my ears. But almost a week into, I find again that these times do not satisfy. The coffee doesn't quench my thirst, the afternoon nap does not fill me up, the "I'm so exhausted from the day so lets watch Seinfeld reruns" don't rejuvenate me as in the moment I think they will.

You know what does? .... Sitting in the hammock rocking my little girl, drying her tears, and comforting her. Redirecting her little misguided request for 3 different types of cheese laden pasta within 3 minutes with love and a solid boundary that I really do know what's best for her. Praying in the midst of chaos for God not to rescue me from my circumstances but to comfort me and rock me through them; to give me boundaries in love that really help me to know that He knows best for me. Just talking to friends, looking them in the eye, and with that contact knowing that my family is loved. And in the same way, turning to look past my often misguided focus, to see the burning bushes in my life; realizing that I am on holy ground, right now, in the present, and that more than anyone else, God is drenching our family in love.... If I would only look over to see it more.

Saturday, July 02, 2005

The grumpy pill

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

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

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

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

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

Tuesday, June 28, 2005

Getting on the "Road" of DI

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

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

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

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

Saturday, June 25, 2005

Abby's Broviac all Patched up

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


Tuesday, June 21, 2005

Abby's going to have a little "Bro"

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

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

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

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

Monday, June 20, 2005

Didn't pass for DI

Didn't pass for DI
Originally uploaded by fireater.
So we thought Abby's immunity counts were good, her ANC, but we thought wrong. We even had multiple get togethers with lots of kids and our "side dish and sanitizer" party thinking that she would be above 1000 or so at least.... Nope..... 200 today. That's Neutropenic, fever alert status and all... Who would have thought so. Oh well.

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

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

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

Carpe Diem!

Thursday, June 16, 2005

Still chemo free

Still chemo free
Originally uploaded by fireater.
Hey all,

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

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

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

Oh yes, more to come...

Tuesday, June 14, 2005

Relay fun

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

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

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

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

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

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

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

Thursday, June 09, 2005

Relay for Life

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

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

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

Relay for Life

Fort Collins High School Track

June 10th 6pm- June 11th 12pm

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

Sunday, June 05, 2005

My normal little girl

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

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

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

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

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