Abby's doing really good

Wanted to tell you all that Abby did really well with her last treatment. She had a bit of the shakes coming off the Decadron and she has been pretty wired too. That is all really normal effects of coming off the Decadron. All in all, her week was pretty good. She was a bit whinny as usual, but that's just par for the course.
It has been pretty nice outside and I'm on spring break this week so we've been getting outside a lot. That seems to help Abby too, she loves to be outside!

So, other than that, not much is going on. All her doctor appointments went fine and the stomach doctor didn't find anything way out of normal. Maybe a little lactose intolerant but just borderline. We will keep her on the Zantac for another month and then talk to him again about were to go next.

On a final note... I just did our tax stuff and got all of Abby's bills in order. I won't tell you how much we spent last year but suffice it to say....THANK YOU ALL that have helped in that arena! I seriously don't know what we would have done. Next year ought to be much less since she only goes down once a month instead of weekly, or in some cases 4 times a week! We even found one day when we went down twice in one day! Crazy!

Get this... we put 6,450 miles on the van going back and forth to Abby's appointments last year!
No driving today!!! I'm going to work on the yard with the girls!

Spinal Tap Tuesday again.

Hey all,

Long time no post... My friend said that I only post when things are hard. I told him that I only post when things are hard but not too hard. If they are too hard then I just want to sleep when I can! But that is fairly true. Abby has been doing very well. Stomach issues seem to have gone away for the most part. She hasn't had any more colds either!

All in all, pretty good. We went to a Team in Training event the other day at Red Robin and Abby had a blast. She is a patient honoree for the Fort Collins team this year so that was nice little get together.

Abby also just went to the Disney Princesses on Ice show on Sunday. She had a great time! The people at Disney came out before the show and gave Abby and Anna a stuffed Minnie Mouse doll. So during the show they just sat there with their stuffed Minnies and little princess wands... and tiaras watching the show. Anna was pretty much mesmerized during the whole 2 hour event and Abby asked a lot of questions about what was going on down on the ice. Pretty good time!

Now today, Abby is back to the chemo pulse. This morning she will start with a spinal tap/methotrexate push, some Vincristine, and some blood tests. She also has an appt. with Dr. Lee, the GI doc, about her tummy. And then tonight she will come back home and start the Decadron, the grumpy pill, which wasn't too bad last time compared with the time before.

Pray that she does well.

Things are going pretty good

Hey all,

Just wanted to let you all know that Abby is doing pretty good. We had to cancel our appt. with the GI doc on Friday because the weather was sooooo bad. I got to Loveland, about 10 miles away and after seeing multiple cars off the road and only going 40mph I decided to see if we could reschedule and go home.

Other than that, things have been relatively calm around here. Tiffany and I got colds again and I'm sure the girls will get them too or something else since there is so much going around this time of year.

Abby's stomach thing seems to be a bit better too. We increased the Zantac dose and she hasn't been wakeing up at night for that reason as much. She still seems to find a way to wake me up though since she is kind of in that routine. We'll have to work on it here before the next big chemo pulse.

Well that's all. Have a good Presidents Day!

Thankful for so much

You know, on these weeks when Abby is some what of a grumpy, sad, and tired little girl on Decadron it would be easy to get bogged down with life. And to a point we do, especially after that first day when you get a bit side-swiped by her demeanor on Decadron. It is pretty hard to watch your child wake up one morning and be a completely different little girl. Constantly attached to her middle fingers and her blankie she walks around the house for most of the day wanting to be held. Oh well, that's just how it is.

Now, I was a bit down about all of this last night as was Tiffany but this morning.... well let me tell you.

I was driving in early to work, a bit sad about the life that my little girl gets to live for the next year plus and reflecting on the past when I turned East toward Greeley and saw the most beautiful sunrise! The whole sky was lit up with pinks and oranges, unique cloud shapes as far as I could see all lit up. I go so distracted at times that I started to forget that I was operating a motor vehicle. Not good. Anyway, a flood of thankfulness for the beauty in life came over me this morning and I just wanted to share it with you.

So Abby's not feeling good. So I have a bad day. So you have a bad day... or week... Still there's beauty in this world. Sometimes it is right there on the surface and everything is rose colored in life. Sometimes it is buried a little and only an amazing sunrise will bring it back out to the surface.

Today the sunrise brought, along with it's beauty, a deep sense of thankfulness. Abby's alive. I have great friends. I have a great family. I have all of you that read these often misspelled reflections and updates on our life with this beautiful little girl that is surviving a bout with cancer. I have the sight to see, and the ears to hear, all of the beautiful things of this world.

So, thank you for all the you have done in the life of our family. If it was as big as donating money for medical expenses or helping us with the move into our house, or even if you only experience with us is from reading this blog... I want to say "THANK YOU".

Thank you for the encouragement that you give us. Even if you don't post a comment on this blog, I know that hundreds of you visit this page each week to see how Abby is doing. To see how you can be praying for us. And just to post encouragements to our family.

So thank you; and I hope that this post can be a little bit of a sunrise in your life today too.

Endoscopy went well

Abby had her Endoscopy this morning and things looked good. No ulcers, no big infections or anything else alarming. They did do some biopsys of each area to run some more test on so maybe that will show something.

Dr. Lee gave us the results of the lab test from last week and the ultra sound results. Basically everything looks normal there too. This could have all been caused by some sort of virus that just took a long time to get out of her system since she is immuno supressed or it could be something else all together.

In some ways it is nice that it is nothing major so far but also it is a little disconcerting to see your child so tired and uncomfortable so often. Hopefully this isn't what the rest of the chemo treatment will be like.

Tonight she starts Decodron (i.e. Grumpy/Hungry Pill) again tonight. Hopefully she does better than she did last month with it. I probably should take a nap while I have the chance... Pray that she does well.

---

Cat Scan... & 3 other appointments

Cat Scan... & 3 other appointments
Originally uploaded by fireater.

So Abby had her birthday CAT Scan today at the hospital. The machine looked a lot bigger than this one and no, no cats were harmed in the making of this blog. Anyway, she did really good for the scan. So good that she was done in 5 minutes. The scan showed that everything was fine in her sinuses, that was what they were looking for. Sometimes kids that are immuno-compromised can get sinus infections that don't show up by the normal means but still make the kids feel really tired and worn out. But that was not the case so at least that is one thing that can be ruled out.

Our next stop on this tour was Dr. Lee, the tummy doctor as we like to call him. We talked about her symptoms and the history and all that and then about options. The best option is to do an Endoscopy of her tummy to see what is going on. This will happen next week on Tuesday and they will put her under again for it. Hopefully that will shed some more light on the why she hasn't been feeling so good.

Dr. Lee ordered some tests so while we waited for them to get scheduled, and since they are just across the hall, we went over to CHOA for Abby's exam. The decided to draw blood and do all of the labs so that we wouldn't have to go to another lab and she saw Dr. Smith to talk about our appointment with Dr. Lee. Abby did pretty good but she wanted to eat and when I told her no she had a bit of a melt down... But the reason I told her no was that since she hadn't eaten for 7 hours, since breakfast, there was a chance that we could get the abdominal ultra sound, ordered by Dr. Lee today... They fit us in so back down stairs we went and checked in at the ultra sound place.

Whew... Appt. #4. The ultra sound took about a half hour and Abby once again did great! What a little trooper huh! She stayed still for a while and then I realized that she thought this was like the CAT scan... I filled her in and told her she could move her head and watch the "movie" of her tummy and that kept her pretty occupied.

After that was done, we went back up to CHOA to pay our bill and get some food... after 2 cookies, a banana, 1 muffin, a glass of water and a couple snack for me, we were on our way.

Anyway, as you can see it was a busy day but a good one. Hopefully we will be a step closer to figuring out why Abby has been having such a difficult few weeks.

I'll continue to keep you posted as we learn more.

Abby's turning 4 and is getting some more tests.

So Abby is turning 4 today! Yippee! Crazy too. 1 year ago I was in the hospital for her day 28 bone marrow test. Also a year ago on her birthday, her cheeks looked like big fat balloons, cute but big! And last year she almost fell asleep on her birthday cake!

But not this year! Nope, this year we had a terrific party! On Saturday she went out to tea with Tifffany and her mom and then we all went out to dinner that night. She even had a big bowl of ice cream after dinner. She did end up throwing that up later in the night but lets not talk about that right now. On Sunday, we had an early party for her with a butterfly cake that she helped make and decorate.

Overall it was a great little family party and she had a blast. She got a couple presents and some very nice cards and was happy as a clam for the night.

Now since Abby is so special, she is going to get a couple more presents this year for her birthday... one will be a CAT scan tomorrow, and the other will be a gastroscopic survey. Wohoooeee! I mean what other 4 year olds do you know that get to utilize such amazing technology so early in thier life! Pretty special indeed!

Anyway, Abby will be getting a scan tomorrow to check out her sinuses since she just doesn't seem like herself lately. Immunocompromised kids often can have a sinus infection but not show the symptoms since they have such a low immunity.

She will also meet with the gastro intestinal doctor to get things ready for a gastroscopic survey in the near future to check for ulcers and/or whatever else may be going on with her tummy. They will have to put her under for that procedure so we'll just be talking to the doctor tomorrow and setting up a time for the procedure.

So, what do you think? Pretty cool presents huh!? Actually, I think it will be very helpful to kind of get to the bottom of some of these things that have been making Abby feel so bad. Pray that they can get some answers so she can start to feel better.

More on Abby

So just another quick post to let you know about Abby. Overall she is doing pretty good. No blood infection ever showed up, her immunity (ANC) is fine, and she's been playing a lot more. Some days she still feels a bit tired and grumpy/whiney, but hopefully that will be less in the near future.

She still is having a hard time at night, waking up a couple times a night sometimes crying, or wanting to be held. Last night she threw up and had some real pain in her stomach, probably from all of the acid and the possible ulcer. We are still working what to do about that but for now it seems to be doing alright most of the time.

Anyway, have a great day and thanks for continuing to come along in our journey.

When will it stop?

So in the last week since my last post Abby has gotten a cold and Anna has gotten a stomach bug. We took Abby down to Denver for the cold since she had a fever. They did a blood culture and gave her Rocephin in case it was a blood infection. Then on Friday I left work early and took her to our local doctor for a rash that they wanted to check out and make sure it wasn't anything serious. All weekend we have been keeping the girls apart so that Abby wouldn't get the stomach bug from Anna.... but to no avail! Last night at 10 ish she threw up and was up off and on until about 2:30am. If that wasn't enough, Anna woke up this morning with Abby's cold, a tit for a tat I guess. Anyway, Abby spiked a fever of 102 today... that would ussually get her admitted to the hospital but the doctor on call said to wait it out for a day and give her Tylenol. So, currently her fever is at about 100, hopefully it goes down to normal by tommorrow or off to Denver we may be going again.

So that's about it really... pretty boring around here at the Schreiber house! :)

I'm going to go nap.

Pray that Tiffany and I don't get it.

This one's been rough

So, I guess these monthly chemos are going to be a bit less predictable than I had thought! Going into this one, I thought things would be a bit more intense but not too bad... I was very wrong.

Man, Abby has been pretty miserable this week. The chemo just wiped her out and then the steroid drug, decadron, just made her extra grumpy and crazy hungry again. This last week reminds me of some of the long times that she was on steroids like last year and this summer. So, I guess these monthly rounds won't be all the same. Oh well.

Here's the current state of the Schreibers... Tired. That pretty much says it. Abby's demands for food coupled with her insatiable appetite, especially for salty foods and carbs, has been quite exhausting. I just hope she doesn't try to raid the pantry tonight or I'll have to put the baby gate back up! She's actually feeling a bit better other than the hunger issue. All she wants to do though is watch the Disney Chip and Dale DVD over and over and over and over and over... Whew! I really need to get those songs out of my head.

Anyway, this morning was her last Decadron pill so she should be coming around here in the next couple days. She'll have couple days of withdraw symptoms and then things should be back to "normal" whatever that is. Actually, the Schreiber house "normal" has been pretty good so far and I'm looking forward to it again.

Pressing on...

The Schriebers

Spinal Tap Tuesday

Hey all,

Just letting you know that Abby is in Denver today for her spinal tap/chemo and to start the monthly steroid treatment... Oh how I love those decadron days! Hopefully Tiffany will come back with some good ideas for Abby's stomach problems too.

Anyway, retroactive prayer for the day and the week to come would be great.

"not feeling good"

"I'm not feeling good." That's what Abby has been saying a lot in these last few weeks. It is so hard to hear that from a 3 year old, not just because I can't do anything about it most of the time, but also because she can't really tell me why. I ask her where things hurt, or how they feel but I usually get the same response... "my tummy."

Lately Abby has been waking up in the night a lot more. And last night she was awake crying about 3 times. We called CHOA last week and they said to put her back on Zantac, so we have. They also said it may take a while so I guess we'll just have to wait. Chemo medicines can be so rough of kids stomachs since the treatment is so long, because of that she might just have to stay on Zantac for the rest of the treatment.

I think it's probably an ulcer, or some other upper GI wall inflamation. What ever it is, pray that she will start to feel better soon and that her body will get healthier... she also has a yeast infection, so you can pray for that too. Thanks!

Man, what a year!

Well what a year it has been huh? I've been relfectiving lately as I remember each day from the past year on how crazy this whole year has been. It's been a year?! I mean that alone is crazy enough. From that morning before we knew that Abby had cancer until just a few days ago... one whole year! Crazy. She's done soooo well and grown up so much!

The night of New Years Eve I said a special prayer of thanks as I put Abby to bed and tucked her in. A prayer and a kiss on her forehead that expressed a deeper love, joy, hope, and relief than I could ever express in words. Please pray with me this year for another year full of love, joy, and healing for my precious little girl.

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!

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.

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

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?

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!

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. 

Contrast

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.