Cancer Kid with a Cause

Cancer Kid with a Cause
Photo by V. Richard Haro,
of the Fort Collins Coloradoan
To buy the image from them click
here

With a look like that I'd say her percentage of a full life long cure just went up!

This picture is from the Coloradoan and appeared in today's paper. Check out the full article here here or at the coloradoan.com site under the lifestyle section for June 2nd.

Well as you know from the last blog entry Abby has a full agenda this month in the journey of not only fighting her own cancer but also helping others join in being part of her journey and a future cure!

Tomorrow we drive up to Steamboat Springs to help cheer on all of the Team in Training participants (the Leukemia and Lymphoma fundraising and awareness event). Abby is the Honoree and will just sit there and give them all that look at the pasta party to get them motivated! I think it might just work! Actually we are honored and excited to be a part of this year's event. It has been a great opprotunity to get to know people from all walks of life that just really want to help out with raising money for Cancer research, Leukemia and Lymphoma in particular. The Leukemia and Lymphoma Society (LLS) has been a great resource to us and even gave us some money to offset the cost of all of our expenses last year. Really great organization.

Next weekend Abby is going to be one of the opening ceremony's guest speakers... I'll probably do most of the talking for her but who knows maybe I can work on getting her to say a sentence in the microphone or two even! That is part of the reason that she was featured in the story today. Diane, the second picture down in the article, is the event chair for Relay for Life and she called up a few weeks ago to see if Abby would do this. Diane fell in love with Abby last year at the event... as did a lot of people I may add. I think it is that little cubby cheeked smile. Anyway, we are excited to be apart of it again this year and help the American Cancer Society raise money and provide awareness too.

To do our part in raising money and awareness we are trying to get as many people to buy a luminaries as possible for Abby. They set these bags out at the beginning of the ceremony in honor or memory of people who have or have had cancer. When it gets dark they light them up. Some are decorated with pictures, others just a name... the whole track is lined up with them, pretty amazing, pretty surreal too. So many people are affected. I just never knew.

Anyway if you want to be part of this event and can't make it or just want a way to help out go to this link and purchase a luminaries, by clicking on the "light the way to a cure", in honor of that little girl up there in the picture or someone else that you know that has had cancer.

Thanks everyone for checking in!

Time to Blog..

Time to Blog..
Originally uploaded by fireater.

Wow, with 3 girls now how will I ever find the time to blog? Even if I have the time I might have used up all of my word by that time with all of the relating that will have to go on now! :) Anyway let me tell you about a few of the things that are going on in our life right now.



Abby is going really good. She still has some hard days during her chemo pulse every month but even with that she seems to be doing a lot better. She gets another spinal tap in a couple weeks and decadron too but it should be a short time. She actually started her chemo pulse the day before Tiffany gave birth to Lily and even with all of that craziness she did really good. We just sent her off to our friends house with a box of cheerios before we went to the hospital. That was pretty funny.



See... Abby is going to be a celebrity for the next couple weeks. Most of you know that she is an honoree for the Leukemia and Lymphoma Society's Team in Training (TNT) race program. We have had a few social events to meet the participants during this season and now the race day has come! Abby, and the family too of course, will be trekking up to Steamboat Springs to cheer on the racers to finish the marathon or 1/2 marathon. We are excited!



Also, the weekend after Abby is the child guest speaker for the American Cancer Society's Relay for Life event in Fort Collins. I'm going to try to get her to say something but we'll have to see how that goes... I may have to do most of the speaking. I'll write more about this event in another post. Abby will be on chemo that weekend so pray that she is up for doing this! It is a great program and so I'm excited to help out with it and Abby truly loves being part of it. Last year she just kept asking to go back over and over again.



Well that's all for now!

Vincristine from a Flower...

So I'm in DC this week for the Milken Educator Awards and since Tiffany was not able to come I took my friend Chris. Today, while I was learning all about the Milken Family Foundation and what all of these cool teachers do, Chris was tromping around our nations capital... He went to the Botanical Graden near the Capital Building and on his tour saw this flower.... The Madagascar Periwinkle. What you are looking at here in this picture is most likely the reason Abby, and so many other Leukemia kids are still with us! Vincristine is made from this flower. The even crazier part of this is that Chris learned from the guide that Vincristine can't be synthesized. It can only be extracted from this plant! Crazy!

Here is a little blurb from a site I found on the web talking about this flower and it's cancer fighting compounds, "...more recently, 2 alkaloids in Madagascar Periwinkle leaves, vinblastine and vincristine, were identified as active anti-cancer agents that could be used in chemotherapy. Vinblastine is used for patients with Hodgkin’s disease and vincristine is used for children with leukemia. With the introduction of vincristine, the survival rate for children with leukemia jumped from 20 to 80 percent." From 2o... to 80 percent... Wow! You can read more about it here.

So anyway, there is your fact for the day. Don't just be looking at pretty flowers anymore, they might just be one the you could fix your aching back with... or at least your kid with A.L.L.!!!

Well, back to the conferance... you can check out more about the conference and how the week is going on the conference blog found at this site.

Buh bye!! 

Pictures of a Lily

Hey all,

I put together a little website for Lily's pictures that we have so far.

I hope you enjoy them all!

Click here or go to:
http://www.i-netconsulting.net/Lillian/

I'm going to go sleep some more!
:)

Abby has a new little sister!

Hey all,

Abby and Anna have a new baby sister.
Lillian Christine Schreiber, 6lbs 4oz, 18.5 long, almost 3 weeks early! 11:51am May 10th, 2006

We just started Abby on her monthly chemo pulse yesterday so pray that we get some sleep this week! I was going to title this blog, "Chemo, Contractions, and Christine... Lily Christine" But I figured just to post it out their as it is!

I'll try to get some pics up soon. Long labor, Tiffany started some stuff a couple days ago and then really got going last night. We went in from 11pm until 2am then the they kicked us out and said it was probably just her body getting ready.... not too much sleep later, and a bunch of crazy big contractions, we decided to go get checked at the clinic and they said to go to the hospital!

2 hours later, Lily was born.

Have a great day, off to take more pictures!

Ohhh the Big blog blood drive

Ohhh the Big blog blood drive
Originally uploaded by fireater.

Well, I've been hinting at it for a while now and now we are going to pull the trigger. Here's the deal, give blood, get a limited edition, hand drawn, refirgerator worthy, signed... well kinda signed picture from Abby and Anna.

Now you may be thinking, "will I really get a limited edition, hand drawn, ya da ya da ya... Picture from Abby?" Well, the answer would be a big stinkin' YUP! one of a kind I may add.

Now you also might ask, "How could I get one of these limited edition...ya da ya da.. pics from Abby?" Well, once again I'm glad you asked and I also may add that I'm glad that you are so concise.... Well, here's how it works. You go to your local blood bank, ( just check the yellow pages, call your hospital, doctor, or just Google it), and then give blood. Once you are done and you aren't feeling light headed anymore, come back to this site and post a comment on this blog entry. When we see your name, we'll look up your address, if we don't have your address please post it or an email. We will then get Abby to draw you something nice, personal, and using a lot of red colors to remind you of this event that you took part in!

We would like to have people give at least as much as Abby has used since this whole thing started. I'll have to calculate but I bet it's up in the teens- 20's. While you are at the blood bank you might want to have them see if you are a good canidate to give platlettes, Abby used a ton of those too! Maybe you could become a monthly donor! That would be really cool! We'd have lots of pictures coming your way in that case.

Here's an added bonus... no, not ginsu knifes... but close... if you really want to help people and get a color picture of Abby, signed I may add... go give blood like the rest of us, and then check into this http://www.marrow.org/HELP/join_the_registry.html . This is the national bone marrow registry. Pray that Abby never needs a bone marrow transplant, but lots of people do. Leukemia, Lymphomoa, and lots of other diseases can be cured by a bone marrow transplant. If you really are willing to give bone marrow to anyone that needs it, then get on this list. If you do, please comment on this blog and we will send you not only a drawing, but also a signed picture of Abby! Talk about a deal huh!

Well really, if you want to help, go give blood. Give it on Abby's behalf if you want and know that what you are giving is saving someones life just like someone elses donation helped save Abby. Remember the retinal hemorrage? Donate some platlettes... Remember how Abby was short of breath and couldn't walk very well? Donate packed red blood cells.

There you have it the Big, Blog, Blood drive. Drawings and pictures will be sent out as soon as someone jumps on this one.... PS... I already got my picture 2 weeks ago when I donated... Wait... I get them all the time... Anyway, the gauntlet has been thrown down.

A Good Wed, Thurs & A Good Friday

A Good Wed, Thurs & A Good Friday
Originally uploaded by fireater.

Happy easter all!



This chemo week has been really good. Before it started I kept hearing the good weather forecast and considering how much I've used that analogy in the past I was hopeful that since it would be a sunny week, that maybe Abby would do good... My hopes and prayers paid off and aside for a few gusts of wind, outside and in, all has been relatively calm here.

We dyed some easter eggs this week and the girls have been eating them all up! Abby eats about 3 a day! I guess that is better than a bunny mac and cheese craving! As for the steroids and cravings... she really has done great. Lots of wanting to be held, and lots of resting but not a ton of requests for food constantly as has been the norm in the past.

See, we've bumped Abby up to a 3/4 dose of 6MP and 1/2 of the oral Methotrexate. We'll check her counts again in a week and see where they want to set the medicine back to. Abby's been trying to chew up her Decadron instead of swallowing it up... she says it taste "yucky". She used to swallow it on the first try, good for a 4 year old, but of late she's decided to chew it instead. We'll have to work on that.

Well, only 3 more Decadron pills to go! We will be done this round on Easter morning.

Yet another Spinal Tap Tuesday

Hello all!

Abby just got done with her spinal tap and Tiffany and the girls are on there way back from Denver. Tiffany also had to take Abby down yesterday for an eye doc appointment. So where to start....

Well, Abby is doing much better, the counts have come back up and she started back on her meds (at 1/2 the dose) about 5 days ago. Her counts were still good today and they started her on her chemo pulse... (Decadron, Vincristine, spinal tap Methotrexate). They will be increasing her oral meds back up towards normal too. Tiffany said that she did really good with the tap this time and hopefully she won't be too grumpy for this coming week.

Yesterday Abby went down to the eye doc for another follow up to her corrective surgery. He said her vision is fine and her eye drift is pretty much gone. He was going to even have us take the glasses away and be done with them but we've noticed a bit of eye wander when she is tired or on more chemo so he said to stick with the glasses until she grows out of them. At that time she will be done! Yippie! Also, her glasses have a 1 year warranty so we took them in to have them looked at and they are going to replace them with a new pair since they aren't holding up the best. Nice to get a new free pair of glasses!

Anyway, that's it for now... I'll post some more stuff here soon.

Counts are coming up!

Hey all,

Just wanted to let you know that late yesterday we talked to the doctor and they said that Abby's counts, immunity counts, are coming back up. 320 yesterday, so she is still neutropinic, but much better. We'll get her checked out early next week and probably be able to start her back on chemo. She is scheduled for a spinal tap, Methotrexate, Vincristine, and the Decadron pulse on Tuesday but I think we may see if we can move it back a little bit since I have a big event at school on Friday night.

Thank you for all of your thoughts and especially your prayers for Abby!

38.... Just 38

Yesterday when Tiffany told me what Abby's ANC was she said, "38". I said, "Oh good, 3800... wow, great!" She said, "no, just 38".

So as you can see Abby still has a very low inventory in the immunity store.

So, you might ask, "what does that mean". Well thanks for asking! That means that she will be off chemo for another week and off of her weekend antibiotic. "Is there any thing else?", one might ask. And to that I would respond again with, "why yes, you are very insightful and yes there is something else." If Abby's counts don't come back up by the end of the week then we will have to take her down to get a bone marrow test again... Now that is a big if, and for that reason, I really do hope that her counts do come back up soon.

Now being that you are so insightful and questioning in nature, you may also be wondering what Dr. Smith has to say about all of this. Well, he says things like, "what's up with her counts?" That's just doctor Smith... Let me translate. "What's up with her counts?" means... (Her counts are really low and so we will keep her off chemo again for this next week. This is pretty normal during these treatments and it is a really juggling act to keep kids from being too low or too high. Her counts should come up in the next week and if they don't we'll do a bone marrow but that is unlikely as she is probably just fighting off some virus.)

So, counts again on Friday here in Fort Collins... If they are low then to Denver we go... Pray that they come on up.

Thanks again for checking up on Abby and our family... stay tuned for exciting news where you can do something and quite possibly get a limited edition and autographed picture from Abby and Anna!

neutropenic is not the best

So, though Abby has been doing really good, she is still neutropenic (very low immunity). They like to keep her between 1000-1500 in her ANC (immunity blood count) and if she drops below 500 she is deemed neutropenic. When people are neutropenic they have a high risk of infection with very little symptoms, obviously not so good. Last year, Abby was neutropenic quite often but this year she has been really good until now. 2 weeks ago, she was about 300 and so they wanted to see us in 2 weeks, i.e. today... Today they ran the blood count and she was at 100! Yikes!

So... the protocol that she's on says to take kids off their meds for a week if they are neutropenic like Abby so guess what? Yup, no chemo meds for a week! That means I don't have to wake up Abby before I go to bed and give her the chocolate coated chemo! Kind of a nice break, I don't know what to do with myself:)

Her blood counts should go back up by taking her off the meds and with it her immunity too. If the counts don't come up within a week then they will have to take her off for another week to let them recover. Dr. Smith said that they usually come back up in a week.

See, we also had a hearing test for Abby today at the hospital. Dr. Smith wanted to get a baseline since her speech isn't the clearest, just to make sure it wasn't being caused by any hearing problems. The test came back great, her hearing is perfect! Now she has no excuse not to listen to me because I know that she can hear me!

Well, that's it for now. Pray that she doesn't get the cold that Tiffany has or that Anna has. Pray that she doesn't get a neutropenic fever, over 101.5, because if she does we have to take her in to the hospital to be admitted.

Oh ya... stay tuned for information on the upcoming Abbyupdate blood drive... Oh ya... it's gonna be big!

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.