Abby Update - A Vision of Healing!

Abby's still doing great

2009-02-19T22:00:00.003-07:00

Well folks, I figured I should post here even though nobody really follows this anymore. (that's a good thing)

Anyway, Abby is doing great. She has a nasty cold right now and the initial symptoms did get us a little concerned and anxious but in the end it's just a cold. We like that. I've been up the last couple nights at 3am or so to give Abby some medicine for her cough and I'm beat. I really don't know how we did it during those years of being woken up all the time. Especially with Lily being born and Abby on treatment! Only by the grace of God.

So, that's it. Abby's good. Anna's good, Lily... well she's just your normal 2 year-old right now (loud, energetic, cute as can be) basically good.

Till next time I post.

The Dad

I really need to keep this up better!

2008-09-10T21:21:00.003-06:00

I'm a bad blogger. And, I'm glad about that.

See if I was blogging on this site everyday still, something would be wrong... either wrong with me or wrong with Abby. And the simple fact is that no news is good news. Therefore, no blogging.

I don't know if I should retire this site or make it the "Schreiber Update... a vision of healing (that part will aways work). I guess I'll just post when I feel like the time is right. People that still read this, I hope it helps you in some way understand what the process of having a child with Leukemia was and is like. It was a crazy time. One that has changed us all, for the better, profoundly and will never be forgotten.

I'm so glad for everyone that journeyed this road together with us. It was a wild ride. Wow, what a ride.

So, here's the much over due update:

Abby is continually taller, and weighs the same as she has for the last 2 years.
Abby is in 1st Grade, she'll turn 7 in January!
She is a beautiful, silly, inquisitive, strong, empathetic, girl who loves life and lives it minute by minute to the fullest.
She is, just as her name means, her fathers joy.
And, she is, to the fullest and truest extent.... ALIVE in every way... (big sigh... big Smile...) Thank you all, and thank you God.

Till we post again...

Abby's Daddy

Port will be out on Friday!

2008-04-16T19:02:00.005-06:00

Well, it will has been almost 1 year since Abby has been officially "off treatment". Actually the 19th will be a year. She will be getting her port out 1 day shy of that anniversary and we are very excited. It all started a long time ago in a whirlwind with her getting this implanted access port and so this seems a suitable end to the journey.

I've been reflective again about this experience, about what our family, our friends and all those that have been touched by Abby have learned and grasped. I've said it before but I'll say it again, If I could go back and change this whole thing, you know push a little button that just erases it all, stops the cancer and I never had to watch my daughter go through all of this... I don't think I would.

I don't know if I'll ever be sure about that thought but I'm pretty certain that I wouldn't press the stop button. There is too much good that has come from it, too much that I and those around me would be missing from who we are.

All those smiles that she gave to the hospital workers, and to the people at the clinics.
All the people like you that have read and maybe related to the trials of this little girl.
All the memories of the good times contrasted with the painful memories of the bad.
The understanding that life is way better at the top when you understand the bottom and that living in the middle gray area is not a good option.
Grasping the concept that I really don't have control and that in that there is tremendous freedom.
Seeing what true community is.
Being only able to receive and unable to give back to all of you who have blessed this experience... and being ok with that.
Seeing what Abby's head looks like when she's bald and being able to laugh at a lot of things that really should make me cry.
Experiencing the mercy, tenderness, compassion, and kindness of God in a way that I never knew was available.
That picture of her in the Fort Collins paper where she is looking like she is going to beat the crap out of any cancer cell that comes near her.
Being able to experience so many little and big celebrations through the eyes of a little girl that really knows how to appreciate celebration.
The ability to look back through the pictures from those years and instantly be drenched by the emotions that they evoke.
To really know, I mean really know, how precious it is to have any of my girls sit in my lap and smile up at me, even if only for a moment.

I wouldn't trade it. It has all meant too much.

So, with all of that in my mind, the port has significant meaning. I look at her in her little low cut PJ's and I see that little bulge and trailing tube under her skin and I long for her to be fully herself again. Fully Abigail. No extra parts in her, especially ones that have been used to inject Chemo into her veins. Freedom from the medical devices. And on Friday that will be a reality. I wonder if we can keep it and bronze it? Maybe that would be too weird.

I guess I should ask Abby... she usually has good advice on those types of things... and of course, it really does belong to her. With all the needle sticks into that thing, she's earned it.

Say buh-bye to Mr. Med-o-Port

2008-04-04T19:39:00.003-06:00

Well it looks like things are moving in the right direction. All the doctors agree that Abby can have her port out soon! Yippee!

Dr. Smith just reviewed here chart to make sure everything looks good on his end too and it does! So, they are going to schedule the removal of the port to happen in a couple weeks, probably 2 weeks from today if that works for the surgeons.

Abby still has to kick this cold and pre-sinus infection thing that she has. We just went to the doctor yesterday to get some antibiotics for her nose but they said it doesn't look to bad, but with her history the opted to give her some antibiotics.

Lily, Tiffany, and I also have the cold... Anna just seems to sleep these colds off so she is doing great after a couple huge naps in the last couple of days.

Wow, almost back to "Normal", whatever that is...

The dad.

Abby's doing alright

2008-03-20T10:36:00.003-06:00

Hey just a little update. You may have know that Abby has been having some persistent fevers and tummy issue for the last couple of months. Well we finally scheduled a bunch of tests for her. On Tuesday she had a CAT scan and we just got the results that the her sinuses are doing great.

2 weeks ago she did this Hydrogen breath test that came back positive and Tiffany is going down today to discuss those results with the GI guy. Basically it looks like there is some off-balance bacteria in her stomach that is eating her food for her so that she doesn't get the nutrients. Kind of weird I know but we'll know more today.

If the GI guy says that she can stop the IVIG then she will get her port out too!!! Hopefully she'll get her port out in mid April or May. That's our hope.

I'll let you know when we know more. Pretty soon we may have our truly normal little girl!

Diagnosis Anniversary #3

2007-12-30T09:09:00.000-07:00

Well once again here we are at the anniversary of Abby being diagnosed. This year though we don't have any medication to report on, any side-effects to tell you about, or any recent rush trips to the hospital. To tell you the truth, I almost forgot about this anniversary this year. The only thing that reminded me that Abby is still a bit different than others her age was me seeing the bulge from her port under her shirt last night.

I read the blog posts from the beginning of this journey this morning and was instantly taken back to that unforgettable week when I wrote those first posts. How crazy that was! I remember sending out the email to tell everyone that hadn't heard the news. I posted a copy of it here.

Anyway, I'll keep this one short since I've spent all of my alloted blogging time reading and thinking on old posts! Maybe you'll spend your alloted blog reading time doing the same.

If you do I'm sure you'll find a thankfulness beyond all that can be described well up from within you. A thankfulness for the life of my daughter, who as I write this is jumping, dancing, and signing... just being the little girl that God created her to be. Making snowmen, pretending to be a cook, stubbing her toes and crying like all normal little girls. She even got a paper cut this morning and guess what... I didn't even freak out. That a good sign.

Merry Christmas and a Happy New Year to you all!!!

Tis the Season to Post

2007-12-22T06:54:00.000-07:00

Ah... A break. Finally I can tell you all about how Abby and the family is doing.

Tiffany and the girls went down to CHOA last week for Abby's monthly appointment. Here blood counts were great! ANC was up at 4700 and her total white count way up at 8600. I didn't even now it could be that high, well at least without being too high and cancerous. Other than the time when it was at 70,000(total white count) when she was diagnosed, I had never seen it higher than about 2,400 (TWC). Crazy. This is the first blood count report sheet that we've ever gotten with no flags on it! everything was in the "normal" ranges! Yippee.

She seems to have fought off any sinus infections so far even though she's had her share of colds this fall/winter like the rest of the house. The IvIG may be helping so they are going to continue to give to her through the winter. After that she can get her medi-port out and be about as normal as any other little 6 year old. Can you believe it, she's going to be 6 her in a month! How time flys when you're fighting cancer.

I have to tell you, it's pretty weird being on the other side of this thing. Not having to get her up to give her meds. Not having to drive to Denver every week or more often. Not having to, well I guess I never had to, worry so much about what would be the outcome of this disease. It's just weird, good weird but still a strange place to be in it's own right.

There's a ton more to tell but I can only fit so much on a post so I'll have to save the details for later. I'll probably be posting more in the next couple weeks since I'll have some more time to reflect. And because Abby's diagnosis date was right after Christmas, I'll probably have even more to think and write about.

Thanks again for checking up on our family and Merry Christmas to you all!

Thankful

2007-11-18T21:54:00.000-07:00

I've been thinking a lot lately about life and how thankful I am to have my own and my family's, and especially/literally Abby's. I guess November is my reflective month.

I was thinking this week about how much things have changed in the last 3 years. How much we've quote "gone through" as people like to say. And yes granted it has been a lot to go through but I don't know if we've gone through more than any of you all that read this blog. Or maybe we've lived 10 years of life in 3, I don't ever quite know. Did I confuse you yet? I think I confused myself!

Anyway, November is a great month to reflect on how thankful I am for everything that we have. I am most thankful for you all! Really I am. I just looked at the counter today and Abby update is at 20,000 unique visitors! 20k! I don't see that as just a number... I see it as a TON of caring... and for that, I thank YOU. Yes if you just read that and are currently reading this now then my heartfelt "thank you" goes to you.

Thank you for Caring about our family
Thank you for Checking in on us
Thank you for your Prayer
Thank you for your Love
Thank you for Crying when we cried
Thank you for Laughing when we laughed
Thank you for Kind comments
Thank you for your Help in so many ways
Thank you for helping us not to feel alone in this
Thank you for Trying to Understand by reading our thoughts.
Thank you for allowing me to use bad grammar and lots of "..." as I wrote.
Thank you for Journeying with us...

So, once again, a sincere and heartfelt "THANK YOU".

And I'll leave it at that.

Disney Detox

2007-10-29T21:24:00.000-06:00

Well, were home now and we have started the Disney Detox Program. Yesterday we only went out to eat once and we said no to ice cream (only a few tears). We did get them some mickey mouse shaped cheese slices though and had a nice sandwich. We watched one Disney movie, actually 2 now that I think about it, and have weened them back to 1 Disney movie today. Tomorrow we will try to get them back into the letter factory video as well as the Veggie Tales though that may be pushing it.

We are saving the Micky Mouse Mac and Cheese (oh yes, they really do make this magical creation!) for a later date when we see withdraw symptoms surfacing.

They have taken many naps lately and I would like to do the same. Once they are back up on their feet I may take them to some really crowded place and have them wait in a long line just to see if the detox is complete. I have high hopes that this process will go smoothly and that we can re-integrate our children back into reality in the near future.

Actually, they really are doing pretty well. Lots of naps and nobody is back to 100% yet but that is to be expected after such a petal-to-the-metal trip! I have a ton of pictures and video clips to sort through, Tiffany may do most of it, 12.5 Gigs to be exact! That about 767 video clips and pictures. Yikes! It will be fun though. You'll have to see the clip of Abby getting tucked in by the giant bunny! Pretty Awesome.

Well I'll get those pics out here sometime!

Out

Wish Trip: Give Kids the World

2007-10-25T10:26:00.000-06:00

Well, we are here at Give Kids the World (GKTW) and are having a GREAT time! This place is amazing! They have a carosel on-site, DVDs to check out, a water works area and swimming pool, and so much more. The ice cream parlor is open from 7:30 AM to 9:30 PM and they encourage everyone to eat ice cream for breakfast at least 1 time while they are here. The Ginger Bread House is where you go to eat breakfast and dinner and it is a fun place too. To a kid, this is a dream come true. The Disney characters where here this morning and we got some fun pictures of Mickey and Minnie Mouse.

We are resting up today for our final push tomorrow back at the parks. So far we have gone to the Magic Kingdom and to Epcott. The girls are having a blast! We probably could have stayed in the Fantasy Land part of the Magic Kingdom for all of both days and it would have been perfect. Abby wears her button from GKTW and the park cast members see her and rush her through the back way to the front of the line for everything! Maybe this is my wish come true! No lines... yipee! There is something magical about that button!

Speaking of magical, on our first day in the park we got out of a ride and were right on the parade route. We watched all the fun characters go by and they were all singing a "dreams come true" song. Abby went right down front to watch it and the Fairy God Mother came by on the Cinderella float. She was singing like all of them and as she came by she made eye contact with Abby. She looked at Abby, held her gaze and threw glitter dust right at her, as she sang "just believe and your dreams will come true." Then she winked right at here and said, "remember dear, a wish is a dream that your heart makes". I looked at Tiffany and she was all teared up, as was I. amazing! And get this...I captured the whole thing on video! I'll try to post it. It doesn't have Abby in the frame but you'll see what I mean.

What an amazing experiance. Everyone has been soooooo loving, so kind, and so helpful. Amazing. I thought that it might be hard to see all the kids and families here but actually it is really neat in a wierd sort of way. I see them with there kids and I don't feel so out of place. They have all gone through and are going through what our family has and than, in a way that is hard to explain, give me peace.

Well, like I said, today is our 3rd day here and as I said we are resting. So I better do the same. we are going to go to Down Town Disney for lunch after the girls get done with a short nap. I'll post more when I can. Probably not until we get home.

Buh Bye!

I am glad to report, that I have nothing to report!

2007-10-18T22:09:00.000-06:00

Once again I have not posted for a while. I guess that is a good sign, not too much to update you all on? But there is, I could write pages about how Abby has changed, for the better, in the last 6 months. She is so different looking, so different acting, and getting so tall! At points along this journey I felt like I would never see my daughters normal little face. I was starting to wonder if it would ever return. Even last spring in Disney Land she was puffy and not feeling well. So, I am glad to report that I have nothing to report!

Well, ok, maybe a few things. But they are all very good! First let me tell you a quick cute little story from yesterday.

The whole Schreiber Clan went to get shots yesterday to protect us from that nasty flu thing that we had when this whole thing started. We got there and gave our insurance cards at the front desk. Abby and an, full of excitement ran up to the front to tell the ladies what we were there for. "We are going to get shots today!" Anna said. Abby had to chime in too, "I got 2 on Monday!"... Anna responds with, "I'm going to get ONE shot!"... I smiled with the yes-my-kids-are-a-bit-wierd smile and off we went to get our shots.

I volunteered to get mine first, then Tiffany, Anna and Lily. Anna cried for a minute but Abby comforted her and she was fine, Lily just smiled at me and then let out a little "what that heck was that?!" kind of cry about 2 seconds after she was done. We all walked out, with no one crying, and a running commentary from Abby about all of our shots. The people at the front desk said something about how no one was crying with a bit of that "who are you people?" "do your kids enjoy shots?" kind of look in their eyes.

Anna limped a little for about an hour and I think that was it. And now, I hope we will have a flu-free winter!

Other than shots, we haven't had a ton of medical stuff lately. Abby still goes down once a month and gets the IvIG in her port, the port will stay till after this cold season is over. And she gets a blood count done then. Last week the counts were up significantly, in a very good range! Yippee. Abby has a ton of energy now and I don't think she quite knows what to do with it all so we have had some talks on being zany. Honestly, I do like zany better than her laying on the couch with her blanket... I'll take the energy any day!

The only other big big news is that Abby's wish trip is coming up soon! Yipee. It is a bit weird to not plan for your own trip. We just got info on where we will be staying but I still don't know much more except when to be at the airport. Actually we are staying in a hotel the night before we leave and then they will take us from the hotel to the airport in a limo. I wonder what Abby will think of such a big car?

I'll take lots of picture of the trip and post, if I can, while we are there.

Thanks for checking in even though my posts are few and far between now.

Blogging? What's that?

2007-08-11T07:06:00.000-06:00

So I've been a bit lax lately. But it's a good sign. Things are going well in the world of Abby and we've been out and about so much I haven't made the time to let you all in on what has been going on. So her it is, a month long summary blog.

Abby is doing pretty good on the medical front. She still has a small fever that comes and goes. It's been pretty low and doesn't seem to bug her too much. She had a little tummy trouble on our 2 week vacation, the last 2 weeks of July, but now she seem to be doing better. She still isn't 100% though. Right before we left on our trip they took her off all of meds! Yippee. Since then we've put her back on Zantac, but that's it.

See, on the doing things front... lets just say we've been making up for lost time. Here's what the Schreiber Clan has been doing for the last month:

Abby and I went backpacking up near Rocky Mountain National Park. Hiked in 2 to 3 miles and back out. I carried all the stuff (35lbs) on the way in. I carried all the stuff (35lbs) plus Abby (42lbs) for the final .5 mile out (uphill). My legs have finally recovered.

The whole Schreiber family took a vacation! We drove to Boise to see Tiffany's folks, did ton including floating the Boisie river with Abby and Anna. They also went to a water park and had a blast!

Then on we went to WA state to see my family. We had a great time there as well. The girls pulled carrots in my dads garden, picked cherries, and loved running around the yard. We went to the beach, went sea kayaking for an hour in the bay, walked around town and Tiffany and I got out to see some great Jazz at the Port Townsend Jazz festival! We had hot dog and marsh mellow roast too at a camp site in Fort Worden.

Then Back to Boise, and back home in time for me to run into work and start to get ready for the school year.

I'm sure there is more that we've done but those are the highlights. I'll get you some pictures of it all soon.

Happy 4th!

2007-07-05T07:20:00.000-06:00

Well, Abby's still doing pretty good. She still has a 99 to 100 degree fever most of the time but you probably wouldn't know it unless you were here all day long. I took her down on Wednesday for another sinus CAT scan and an appointment with Dr. Pashley. He said she looks fine, just a little bit of stuff up there but it is not a sinus infection at this point and we just need to keep her on antibiotics and do the nose rinsing.

She was on some newer antibiotic but it seemed to make her super hyper and she was having a hard time sleeping so I asked if we could find a different one. The possible side effects on that one were pretty terrible too. I think it was called Levaquin. in my opinion, next to some of the chemo stuff, it was the worst drug that she's been on. Anyway, they moved her over to Cleomyacin again for another 14 days from then, we are about 1/2 way through that one now.

Even with her not feeling 100% and Lily not feeling good too, she had her 1 year shots on the 3rd, we still ventured out for the 4th. We went to old town Fort Collins to the little celebration down there. Ate hot dogs, and had some fun. They had this big balloon blowup slide that the girls went down, it was about 40 feet tall I think. Abby went first and then Anna wanted to go. Anna virtually through herself onto it and bounced down the slide! She came out all smiles, so I guess she is just a little thrill-seeker.

After we got home and did naps we went back out and over to the Budzynski's house for some B-B-Qin'. It was fun and Abby and Anna had a ball running around with the kids and playing. Abby ate 2 hamburgers too, good fuel I guess for all that playing.

That's about it, I'll keep you posted about this persistent fever but it doesn't seem to be bugging her.

Mark

Summer Fun

2007-06-24T07:41:00.000-06:00

Well things are going pretty well this summer. Playing in the yard, enjoying the sun, and splashing in the little inflatable pool when it gets too hot. Since Lily doesn't get too much air-time on this blog I thought I'd post this nice little pic.

On the Abby front she's been OK. She still is fighting off another, or maybe the same, sinus infection and so this coming Wednesday we will be taking her down for a full day of tests. Another CAT scan, an appointment with the ENT doctor who did her surgery, and finally over to Dr. Smith's office for her monthly checkup/IvIG dose.

I'll keep you posted as to what the docs say. Right now she is back on antibiotics. They decided to put her on some new antibiotic that just came out that is suppose to have a broader effectiveness than Cleomyacin does. We'll see. They did a blood culture/CBC the other day since she's had this nagging fever but it didn't turn up anything so they think it's probably just the sinuses.

Abby has changed a lot in the last month. She has gotten a lot taller and thinner in her face and torso. I'll be interested to see what her height is when we go down to CHOA, I bet she's 2 inches taller.

And also, Abby had a little celebration party yesterday at the park with a bunch of our freinds that have been helping out so much during this time. I think it was good for everyone to see Abby doing so well even with a sinus infection. If she has this much energy with a low-grade fever and sinus infection I'm a bit scared to see what she'll be like when they finally clear this thing up!

Thanks for checking in. I'll post more and maybe some pics of the party in a few days once we have more information from the docs.

Abby goes pony-back riding

2007-06-11T20:17:00.000-06:00

Hey all,

Long time no post. Well let me catch you up on some things.

See, schools out for the summer. I'm still working part-time doing tech stuff and I'm enjoying having more time with the kiddos.

Abby's counts have been really good. She had a sinus infection from probably before we went to California until about 2 weeks ago when after the 4th round of antibiotics she finally kicked it and is feeling much better. She has a ton of energy! Hard to believe it is the same kid! I had to ask a couple people with older kids if this amount of silly energy is normal for her age!

Abby had another Dr. Appt. with Dr. Smith at CHOA and everything looks good. They tested how high her Gamma Globulin is to see if they can take her off the monthly IvIG therapy or if they should wait. We'll probably go for another few months or maybe more depending on the results of her levels.

Abby has been in Sunday School 3 times now and hasn't gotten sick! She is actually really running the gauntlet this week since she is doing VBS all week long with all those snotty kiddos! :) We'll see how it goes.

The picture on the top is from when we went cabin camping up at Estes Park. Anna and her went on a 30- minute pony ride and had a blast!

Other than that, things are just normal... I mean really normal... kind of wierd, but I'll get used to it!

Pictures of the trip

2007-05-20T06:57:00.000-06:00

Hey all.

Just a little post to deliver the best of the best pictures from our trip. I put them here. I didn't label any of them but I figured you'd all be able to pretty much figure it all out.

Other than that not much has been going on on the Abby front. She still has her sinus infection and constantly has about a 99.5 or 100 degree fever. She is back on antibiotics, Augmenten, and if the fever doesn't go down more we may need to take her in and get a blood culture just to make sure things are ok.

It's a very nice sping time here in Colorado and I'm trying to enjoy the sunny days before it gets too hot. Once school is out I'll have more time to do that. On that note, once I'm done for the year we will be taking a little family trip up to Estes Park to do a little camping. I think that will be a good time too.

I'll try to keep you all posted as we move on ahead. Abby's next appointment will be after Memorial Day so I'll post again after that.

See ya all.

We made it to Disneyland

2007-05-09T20:14:00.000-06:00

Hey all just a quick thanks and a "hello" from Cali.

Here's the outline of what's happened and is to come.

Beach was great! Couldn't keep Abby out of the water... Anna wasn't so sure about the waves but warmed up to it over the few days that we were there. Basically we just sat in the sun, took some walks on the beach, played in the waves and enjoyed the view.

Lily, Abby, Anna all shared a room and did great. We had lots of fun sitting looking at the view above from our 2 rooms.

Abby and Anna went with the Dugalls to SeaWorld on Tuesday and had a blast. Tiffany and I had a blast letting them go to Sea World while we hung out at the beach and did some laundry. We pretended that we had 1 baby for a day and loved on Lily a bunch.

This morning, Wednesday, we all got up, packed, and drove to Disneyland. Put our stuff at the hotel, and went over to California Adventure until check-in time. The kids rested for a moment on the beds once we checked in and then we headed back to California Adventure for a quick dinner.

I took Lily back to the room since she was super tired and the parents plus Tiffany, Abby, and Anna all went over to Disneyland to see the sites until it closes at 8pm.

Tomorrow, the character breakfast, and early day into Disneyland, and a long day at the park.

Friday more of the same and some fireworks.

Saturday we leave after lunch.

Off to rest up for the big days ahead.

At the beach.

2007-05-05T20:59:00.000-06:00

Ahh, we're finally here! Seeing the waves, the sun, the girls playing in the water and sand really does my heart good.

We went to the beach right away and the first thing that Abby did when we got there was to start collecting things. Rocks, feathers, seaweed and sticks. She put them all in a mound and decorated it very nicely. Vicky said she must be building a memorial to God like the Israelites did in the old testiment. So Abby kept building her memorial to God. And by the time it was done it definately was a monument to be reckoned with!

Pretty funny stuff. And so much more to come!

Lots of great pictures on our new camera. We'll have to put a link to an album for you all to look at. I'm sure we'll have a ton of photos by the time we are done!

Off to indulge in the incredible sunset! bye now.

Appt. and Steroids...

2007-04-28T07:09:00.000-06:00

Well, we have a week of steroids again starting yesterday... don't worry, they aren't for Abby, they're for me!

I know the first month that Abby doesn't have to be on the grumpy pill and we still manage to get oral steroids in our house! I have a sinus infection again, actually Abby does too, but for mine they decided to really clear it up and "throw the book at me" as the Dr. said. So, Augmenton and Predinsone for me and Abby gets a round of Zithromax to help her out.

Pretty funny huh... ha ha. I'd laugh but it would hurt my face:)

Anyway, Abby's doing really good. She had her appointment yesterday and got IvIG. It all went well. Her ANC is up to around 3000 and everything else is coming up too! She'll get her IvIG levels checked next time to see how much longer she may need to be on that stuff. Dr. Smith said that sometimes it takes awhile for that part of the immunity to come back, it is just a bit slower to return. The ANC though is quick to return and so hopefully that will boost her cold and disease fighting ability in the near future. Especially since we are going to the "germiest place on earth"... I don't think Disney would want that to be their true tagline.

Well, off to take my meds. I'm thinking, just for old time sake, of smothering them with chocolate syrup and then waking myself up at 10pm to give them to myself.... or maybe not. I don't think I'd want to use that spoon!

Have a great day! We are off to Disneyland in T-6 Days!!!!

Officially Done!

2007-04-20T09:33:00.000-06:00

Well the last pill was given last night. I still put the spoon back in the chemo container with the remnant pills and put it away. I don't really know what to do with it all now. What will we use that space on the top of our microwave for now? I'm also going to get back about 2 square feet of cabinet space back too. What will I do with such sacred space? :)

Anyway, pray for Abby's continued healing. I'm excited to see the gradual change as her body gets rid of these chemo substances and starts to slowly back to normal. I bet combination of low altitude, higher blood counts and lots of sugar in Disneyland will make for one energetic little girl! And one exhausted little girl by the end of the day!

Have a great day and enjoy the fireworks in your life too!

The Last Pills

2007-04-18T22:26:00.000-06:00

Well we are fast approaching the final day of treatment. A date that I've been looking forward to since I've known about it.

I thought about tallying up the total number of pills that she's taken, or maybe the number of needle sticks that she had received, or the pints of blood that she has had transfused... but I thought that might be a bit depressing. Lets just say it's a lot and call it good.

This is a picture of really the last 1.5 pills that she will take. Crazy little pills. It is weird think we won't be dealing with the monthly grumpy and hungry pills anymore, nor the Methotrexate and spinal taps, or the 6-MP. It all just goes away. No more refills... weird. Can you put extra unused portions of medicines on Ebay? Just kidding. :) Actually we don't have a ton of any meds left over so that is good. I kind of feel weird about putting them down the sink or in the trash... what if some little critter gets it in their bloodstream and starts to glow, or turn into a super hero maybe. So I'll just have to take the extra to our clinic next time we go down.

And now we let her body rebuild. I wonder if she will feel and act a ton different? Or if she'll even notice being off all of this stuff? Let me say it one more time... Weird. But definitely a good weird.

I'm off to bed... the 19th of April, Abby's official treatment end day only 1.5 hours away. I feel like I should stay up, set up some fireworks in the driveway and welcome in these new years of our lives after chemo. Actually my dream firework show will probably be much more spectacular than my sidewalk show, so off to bed I go.

In the Middle

2007-04-10T23:25:00.000-06:00

It's 10:45pm and whole house is asleep except for Abby and I. I think it might have been the double espresso that we split before dinner. What can I say the kid likes Starbucks:) Actually, I just gave her the "chocolate medicine" pill, #9 we're in the single digits now counting down to zero. I got the spoon out, put the M&M sized pill on the spoon and covered it with chocolate syrup. Crunch, crunch, sip, sip and back to bed she goes. I wash off the spoon, put it back in the sealed chemo container and back into the cabinet. Pretty much the same as the last 600+ nights of my life. I think I might have get that spoon bronzed... or maybe incinerated. I don't have much time... I guess I should decide here soon.

Now, with that being said, I should probably jump right into some point about how happy I am for Abby to almost be done and all that... But that's the problem, I don't really feel that way... it's hard to explain but let me try.

I guess I'm glad that Abby is almost done but in a way I'm still a bit numb. I don't if numb is the right term, maybe apathetic... but you know that doesn't really fit either because I do care, I care a lot actually. I care so much that I'm scared. That's right, scared. But I don't want to be scared and there is so much to be happy about, so much to celebrate and so I sit here in this hard to describe place. Somewhere between exuberant to be almost done and yet scared to be done... just kind of in the middle.

I think Dr. Smith maybe had the right words to describe it, "unprotected" he said. That's how people often feel when they come to the end of the treatment, unprotected. That word really resonates with me, rings me to the core. I mean even though chemo is ugly, makes peoples hair fall out, makes them feel like junk it still protects them. It still kills off the cancer. I mean lets be honest, if it wasn't for all of the nasty treatment that Abby was on she most likely wouldn't be here anymore. And now the day I've been waiting for, the day we've all been waiting for, Abby last treatment day is quickly approaching. The day where we stop suppressing her cell division and let everything grow like it is suppose to!? (exclamation and question mark intended). And with that fact, I'm left in the middle.

Now it's not like I won't be celebrating because I definitely will! But it may look a little different than i was thinking it would look like. Maybe more of a phased celebration. A little celebration to start here on April 19th with a bit of underlying anxiety. And then a few weeks later while we are on the beaches of California and at Disneyland a bit more of a celebration. The one month follow up... a celebration while holding my breath for the blood counts to come back. And then this fall when she gets her med-o-port removed a bit more of a party. October we will be going on her wish trip and I'll be looking forward to that trip as an even bigger way to celebrate all that Abby has walked through at such a young age. I'm excited to see her, actually see us all, be in our best child behavior!

So, does that make sense? I'm fine with it for now, but I don't want to stay in the middle for too much longer. I'm more of an extremes guy myself, give me the top or the bottom. Let me tell you, it's a much better way to experience life. I'd rather have highs and lows than just live in the middle with it's illusions of control and it's pseudo protection. All that happens by staying here is you get numb and apathetic... and once you're there you get stuck, and you don't really care about taking the risk and going back out into the non-safe looking world...

come to think of it, maybe I will bronze that spoon... it can be part of those series of celebrations that are speeding on towards us! Looking forward to all the potential highs and potential lows.

Off to dream of the days to come.

The last of the Grumpy pills

2007-04-03T22:34:00.000-06:00

28 days of the grumpy pill (steroid drugs, Dexemethasone and predinsone) in Induction.

21 days of the grumpy pill during Consolidation.

5 days each month for the remaining 2 years of treatment.

The dosage has gone up as she's grown up, from 1 pill twice a day to now 2 pills in the morning and 2.5 at night....

Tomorrow morning is the last day of the grumpy pills, and boy is she grumpy this week!

... all I have to say is, "2 more pills to go."

I'm tired, I'm getting grumpy, I better go to bed.

Rewishing

2007-03-30T15:32:00.000-06:00

Well last night we had the "wish lady" over again to modify Abby's wish. For some reason it seems that Abby has changed her mind about going to Disneyland and now wants to go to Disney World. I don't think it had anything to do with me showing her Disney World on the computer hooked up to the TV. An showing her the pictures of the giant tomatoes and cucumbers at Epcott didn't have any bearing on this change of heart either. And I'm sure me making up songs about Disney World didn't matter much either... but for some reason she decided to pick Disney World instead of Disney Land... weird. :)

Actually, the Make a Wish granter said that it would probably be better and since all she really wants to do is ride the Dumbo ride and Disney World has that ride too. Disney World also has the "Give the Kids the World Village" which is set up for wish kids and their families. The village has a fishing pond too, since that was another wish of hers I think it will be perfect. So, even though they are both Disney places she still had to say "Disney World" to the wish granter. So, last night the Wish granter came over again and asked her again what her wish was. Quickly Abby said, with very clear speech I may add, "Disney World." Pretty funny actually.

Her second wish, the one that they will do if they can't fulfill the first wish, was a bit harder to get out of her. She didn't really have a particular place like St. Lucia, or the Bahamas, or Hawaii but she did get across that she would like to go and find sea shells on the seashore. I think any sea shore would do to her. I probably could make a beach in the backyard and throw store-bought sea shell on the sand and she would happy to collect them. So, that's the second wish.

I tried to take a picture of the wish token that she recieved with her wish but it seems that it is hard to photograph wish tokens, maybe something magical about them. Maybe they are occupiing a different part of the space time continuum... or maybe my camera just doesn't have macro lens. I'll go with thought # 1.

Hey... did I tell you that Abby's in Denver right now getting her Last Treatment? I know crazy. Tiffany took Abby, Anna, and a cake as big as Lily down to CHOA. Hopefully she got a picture of it. Abby gets her checkup, her Vincristine, and IvIG and then a bunch of oral pills at home today and 5 days of the grumpy pill. But these are her last 5 days of this grumpy pill! Yipee!.

It doesn't seem real that she is on the eve of not having to take all this medicine soon! Crazy.

Phobic

2007-03-26T21:41:00.000-06:00

Sometimes I'm in the mood to write and sometimes I'm just not in there. This is one of the latter moments in my blogging life. But, I thought if I just started I'd probably get into it. So here I go, maybe I'm just tired...

You know Abby is coming up to the end of her treatments soon and I know I should be joyful and happy that Abby's almost done, but nay. You see during this last 2 plus years I've become kind of phobic. And in a weird sort of way, I don't know if I'll know how to act any differently when all is done.

Let me explain with a little story about church. Just last Sunday we all decided to go to church. The plan was to sequester ourselves off on the side, our usual spot, and worship together. Then Tiffany was going to go off and help in the Preschool classroom and I was going to take the girls to our less germy and therefore safe house. So we get there early, pick a nice remote spot with a great angle of the profile of the pastors nose way off to the side. No one around, perfect. As church begins people start to file in late. Now maybe they thought we were lonely over there all by ourselves so a family came and plunked down right behind us. Then another small family in front, to the side, 2 rows in front, on and on. So there I am with my daughter, who has no mask on by the way, and these germy people all around me. You know, they don't pass a plate for money around in our church but I had visions of filling it with sanitizer and just passing it around our neighbors in the pew. So, I'm trying to sing and I keep hearing coughing, and then sniffs. Kids around us are picking their noses, people are coughing and it pretty soon that's about all I can hear. (ok so I'm exaggerating but you get the point.) This is my life. I now open the bathroom doors with a paper towel on the way out. I flush with my foot or elbow and I find myself smelling Purell like it's a fine perfume.

So now you see why I'm a bit anxious when this is all over. Right now most of you would say that it is completely fine for me to be a bit germophobic. But what about in a month? Or a year? I may be doomed to be "one of those people". What happened to me? I used to just boil the spaghetti sauce if it was older than I thought reasonable... now I throw it away. Oh no what have I become!?

Obviously my germphobia is irrational. Obviously my hand washing isn't working. Nor is the humongo air filter! Oh well I'll tell you how it all goes in a year.

Now onto the Abby front. Abby's last treatment, yes... LAST TREATMENT. Hey that's fun to say, "Last Treatment". [PERSON A]: "Where are you guys going on Friday Mark?" [ME]: "Oh we're off to Denver for Abby's last treatment." [PERSON A]: "Wow, it's her last treatment?!" [ME]: "Yup! it's her last treatment. Pretty cool huh?!"

So ya, Friday, Abby's last treatment. Last one. Finae, done, audios, buh-bye, Final. (i.e. Last). Tiffany is going to take her down and I'm going to hang out with Lily and Anna at home. We thought about taking her today or tomorrow but I was going to have to take more work off and so Friday worked better. Abby will get Vincristine, and IvIG and then some oral meds (plus the grumpy pill) at home. Wow! Only 10 more Decadron pills to go! Yippee. Then we'll continue the nightly meds until April 19th.

Wow, I think this whole soon to be done thing is going to take a while to sink in. It's coming up fast!

While I wait I just keep washing my hands to pass the time.

...Oh hey! I almost forgot to tell you... Abby's got Pink Eye again. I think I do too, and Tiff. Ah the fun of it all.

The Wish Lady

2007-03-24T07:33:00.000-06:00

Abby is still doing really good. The weather has been great and so she has been able to play outside a ton. Her Nonnie, my mom, was here last week she got the girls a new bike to share. Anna has a little pink one but the wheels are still flat so I'll have to fix it soon so that they can race or something. The went out on the trail by our house and I guess Abby pooped out about 1/2 way into it so Tiffany had to put the bike on lily's stroller and push it home.

The Make a Wish Foundation people came over last night to see what Abby wanted. She was excited all day and keep asking me what time it was. When they finally got here both the girls ran off to hide. I know, I don't get it either. By the time that I hand wrangled them out of the corner of the family room Abby had fallen, stubbed her toe and was crying. But, she soon was over it and bouncing on the couch next to the "wish girl" as she called her.

They gave her a neat coin that says "wish" and asked her a bunch of questions about what her favorite things were. When she was all done with those they asked her the big question, what do you want to wish for?

Now I have to give you a little history before I tell you what she wished for. All week long she's been saying she wants to see the seashells, or swim with the "fishies" or go fishing or stuff like that. The week before though she wanted to "fly off to Never Land" which was cute and all but I thought might be hard to do. But last night it was none of these things it was simply that "I want to go to Disneyland". That's the wish. We made sure that she knew that she was already going to go to Disneyland but that made no difference to her so... sometime this fall we will go back to Disneyland and do it all again! I'm sure it will be great, she will have a blast both times as will we. But, I do have to say that swimming with the fishies in Hawaii would have been my first choice. That wish did come in second though so if they can't fulfill the first wish they will try to make the second one happen.

So that's the deal. I'll post some more pics soon.

Psuedo Spring

2007-03-18T07:44:00.000-06:00

Well spring has sprung here in Colorado, even if it's only for a week or two. I love these little teaser spring days in March. We'll probably get snow next week but that's OK. Since it's been in the 60's and 70's this week Abby and Anna have been outside a ton. Playing in the yard, swinging at the park and riding their bike down our sloped driveway... Anna's a bit of a daredevil on that one!

The sun has definitely brought a new lightness to our family. It's great to see everyone feeling well and playing so great. Sometimes I forget that we have been locked up in our house for the last 3 months. No wonder this freedom to at least the yard has felt so nice!

We'll it's sunny again, so I'm going to make breakfast and go enjoy the sun. I'll be leaving the computer inside.

Back on Chemo

2007-03-14T06:37:00.000-06:00

Tiffany took the girls back down to Denver to see Dr. Smith on Monday. Here counts are all way up, about 2000 ANC and 5000 for the total white blood cell count.

So, now she is back on her nightly chemo meds at a half dose for now. At the end of March she will have her last chemo pulse. By mid April she will be off all of her chemo and will just go down for checkups, IvIG and CBC checks. Sometime in September or October she should be able to get her access port out.

So, things are looking good. Abby's having fun playing outside in our nice weather and we are all starting to get back into the old routine of having non-sick kids! Yippee!

Abby's Home

2007-03-11T09:04:00.000-06:00

Hey all, just wanted to let you know that Abby came home from the hospital yesterday around lunch.

She seems to be doing ok but still is a bit grumpy and under the weather with her cough. The fever is gone and her counts and back up to a good range.

She still is off her chemo. We'll have a checkup on Monday to see how she is and if we should start back up her meds.

That's it for now.

One More Night

2007-03-09T14:24:00.000-07:00

Well it looks like Abby will be staying yet another night in the hospital, this will be her 4th night there. Tiffany took the shift last night and I came home with the girls. Tiffany's mom came back in to help and she arrived last evening. That let me catch up on some stuff this morning at a coffee shop while Vicky watched the girls. She is actually going to stay down with Abby tonight and let Tiffany come home. That will be nice because I haven't seen Tiffany much since this whole thing started.

Abby seems to be doing better today but the cough is worse, probably all that sitting in the bed. They are going to start her on some nebulizer treatments to help clear out her lungs. Dr. Pashley stopped in this morning and checked in on Abby and said her nose was looking really good, he's the one that did the sinus surgery. Dr. Smith also stopped by and checked her out. Since her fever is still bouncing around in 99-101 range and her cough is worse he wants her to stay another day for now. I never got a CBC result to see what her immunity is but I'm sure it's still pretty low.

So that's the scoop. I'll update more when I get a chance. But for now... a nap.

Mark

The Uncomfortable Bed

2007-03-08T11:37:00.000-07:00

Well, I'm sitting here in this same uncomfortable bed that I remember so well from the first time we were here. This time I was smart though and I brought a nice cushy sleeping bag for to pad the bar in the bed that gets you right under the ribs, still though it's not the most comfortable thing I've ever slept in. Still I think for the price of this room per night they could have a more comfortable bed, I mean I only pay $100 plus for a really nice B&B during the off season and it comes with breakfast too! Oh well, I guess we're paying for them to wake us up all night long instead, they're doing a good job in that area. :)

Abby's doing ok. Here fever stayed down in the 99-100.5 range today with and without the help of Tylenol. Tonight when they checked it it had bounced up to 102.6 again so they gave her some Tylenol to bring it down. It seems like when her fever is high, her cough get worse too. They put her on droplet precaution and now anyone that enters has to wear a mask... except me because I'm impervious to everything but kryptonite... actually, I think sardines is my kryptonite but I digress.

So, back to Abby. Right now her stuffed poodle is visiting with the red light on her toe (the pulse/ox). So, either she is delusional or just feeling better. Oh no, I think the poodle is using the Kleenex box as a potty. Maybe I'm delusional! ...I think she's feeling better, yep, 99 degrees now.

Anyway, I'm off to bed myself now. Hope you don't mind a late posted blog because I'll have to post this in the morning.

Spent.

2007-03-06T21:34:00.000-07:00

After 3 months of chemo coupled with colds, infections, surgeries, procedures, trips to Denver and a multitudes of medications I am now spent! Abby was up 4-5 times last night, Lily was also crying about as many times (she's teething). Abby's cough is worse again and she isn't sleeping or eating very well.

Usually I can brush it off, get through it and find the positive side of the issue in the moment but not this time. I think Abby sums it up best when she said to me last night, "I don't think this cough will never go away!" or "I didn't sleep at all last night!" in her little sad and frustrated tone. Really breaks my heart.

Anyway, that's how it is. Tiffany took the family down to Denver again today to get Abby checked out. Her ANC was at 0 and her total white count was only at 300. They checked her out, talked it over and since she sounded ok in the lungs they let her come home.

I came home early and walked into the house to the sound of Abby screaming and crying. I held her and tried to figure out what was wrong through her crys. It is really hard to not be able to do anything about all of this, really hard. She had a fever again so Tiffany called CHOA and they decided that we should get Abby admitted to the hospital again. Tiffany took her this time and when she got down to the hospital Abby's fever was up to 103. The staff did all the usually neutropenic fever stuff, cultured the blood, gave her a stiff shot some mega antibiotic and got her started on fluids.

It's 9PM now and things sound like they have started to settle down. Abby's cough is still keeping her away and hurts her to cough. Her fever has come down a good amount and now hopefully she can sleep. They did a chest X-Ray and we should no the results of that tomorrow.

Tiffany said that they are in the same room that Abby was in when she first got diagnosed... kind of weird. Tiffany commented on how things seemed to have come full circle. Indeed they have. My hope is that they can figure this thing out and kick this bug that she has. My hope is that Abby will feel better.

My last hope is that this truly has come full circle and that the bed that Abby now sleeps in tonight, the same bed that she was diagnosed in over 2 years ago, will the last hospital bed that she will have to sleep in for a very long time.

Ahhh, I can't wait until she feels better. Thanks again for checking in.

Overnight in the Hospital

2007-03-03T14:37:00.000-07:00

As I was sitting there beside Abby's bed at PSL watching her put the pulse/ox on the stuffed poodles paw I thought, "Man, I haven't had to be here for a long time and boy am I glad." Actually sometimes I like it there. With all the beeping, tubes, people coming in and out, and even the little chair that turns into a most uncomfortable bed... still, I feel comforted and safe. I guess it makes sense, you're in a hospital, state of the art medical technology, trained staff, lots of good drugs.

It also brings up lots of emotions from the the past and makes me reflect on the last 2 plus year of our life. Especially with surgery. This one was a bit harder than most of the other ones except maybe the eye surgery. She didn't feel good at all when she came out and all she wanted to do was blow her nose. Obviously she couldn't do that. It took her a couple hours to stop crying, man that was hard. Part of it was that she was so tired. Once she took a little cat nap she was much better, that was at about 3pm. Tiffany left once Abby had calmed down and went back home to relieve her mom who was watching Anna and Lily.

The overnight in the hospital was pretty good. Abby woke up a lot during the first part of the night and went through 2 boxes of Kleenex dabbing her nose. It bleed a lot at first and by midnight it was pretty much done. Speaking of bleeding, she did have to have 3 transfusions on Thursday. One during surgery of platelets and one more unit of platelets after surgery following a quick infusion of packed red blood cells. She had a hemorrhage when they did the bone marrow and since her platelets were down to 68,000 they decided that they should give her some more before they started the sinus surgery.

The right sinuses were pretty clogged up with infection gunk and the other side was a lot better with just a little bit of gunk. They drained the right side and made both sides a bit bigger and easier to drain in the future. They also took a bunch of cultures of different spots so that they know what antibiotic will be the best to put her on. Those cultures will take a while since she's been on so many antibiotics but we should know by next Wednesday or Thursday. Right now she is still on Cleocin twice a day. She also is starting her Dexamethasone (steroid) pulse but is off all of her other chemo meds until her blood counts come back up. Her ANC (immunity) is still pretty low at 400- 600 depending on the day.

On a positive note, the spinal tap that they did while she was under was her last tap! Also, this Dex pulse is her second to last pulse! And the bone marrow that they did (the preliminary results came back fine) will take the place of the normal final bone marrow that they do in the last month!

So, overall Abby is doing much better. She's been playing today and seems to be in good spirits. She's a bit grumpy and her face and back are a bit sore but you wouldn't know it by watching her wrestle with Anna. She still doesn't like to do the nose rinse but really, who does?!

Thanks for all of your calls, prayers, and help during this busy medical time! You all rock!

Sinus Surgery Thurs

2007-02-28T21:41:00.001-07:00

Hey all,

Abby's on for the sinus thing tomorrow morning at 11am. We'll take her down, check her in, and they do it all. It takes about 45 minutes per side of her nose and they will also be doing her spinal tap, and a bone marrow while she is under too.

She'll start her Dex pill tomorrow too so I hope she feels like swallowing them. We should be able to bring her home tomorrow afternoon but we may have to keep her over at PSL (the hospital) if they need to watch her. We'll see.

I'm off to finish getting ready.

A Full Week

2007-02-27T06:37:00.000-07:00

Well, it looks like we will be going ahead with the sinus surgery. Tiffany took Abby down to see Dr. Pachly, the ENT doc, and he took a look at her old and new films and said that we really shouldn't wait any longer. He's a nice doctor but also doesn't want to mess around and keep trying antibiotics anymore. Actually in the films from October her sinus infection wasn't completely gone on the 2nd scan and in last weeks scan the sinuses are completely filled up, mostly on the right side. There is no opening for the stuff to drain out this time, last time there was a small opening, so we can do nasal rinses until we are all blue in the face but in the end nothing is going to get past that blockage. So, surgery is really the only option left.

Now I do have to say that the film he looked at yesterday was from last Monday, Presidents Day. Things probably are a lot better after a week of antibiotics so maybe some of the wash is getting up there but who knows.

I really don't want for her to have to do yet another surgical procedure but I'm also tired of her being sick. Dr. Pachly said that she'll feel stuffed up and uncomfortable in her nose for a few days after the surgery but it will probably just feel about the same as she does now.

So that's one part of the week. The other part is the Chemo pulse. We start that today. She'll get one of her last spinal taps, some Vincristine, and IViG. And then off to the eye doctor to check her out for her 6 month follow up. She'll be on Dexamethosone for the week so Thursday ought to be a bit fun since she won't be able to eat before the surgery.

That's the scoop. I've got to get Abby ready to go to Denver again. I'm going to need to get her a more comfortable car seat with all of this driving!

Fair to Good

2007-02-25T15:35:00.000-07:00

Just a quick post to tell you that Abby is doing fair to good. Her fever is down a bit, 99-100, and she is eating a little better too. She still is pretty pale and takes a lot of rests but hopefully things will keep slowing getting better.

We're suppose to call tomorrow to tell them how she is doing so and then we can see what the next step will be.

That's it.

Just pray for Abby's health

2007-02-23T07:11:00.000-07:00

Hey all,

Abby's still not doing good. Still has a fever. Still is coughing a lot and not feeling good. Tiffany took her back down to Denver yesterday and they did a blood culture and gave her fluids and a dose of IV antibiotics. They also put her on 1 more antibiotic to help her chest since it sounds like she is getting some fluid/gunk in there. So, now she is on 4 antibiotics. They also did a CBC and saw that her hemoglobin (the oxygen carrying part of your blood) is pretty low, 8.0.

So here is the new game plan:
See how she does over the weekend.
See if the fever goes away.
See if the cough goes away.
See if the nausea goes away.
Do lots of nose rinsing.

If she seems a lot better on Monday then we'll continue as we have been.
Get Chemo, Tap, IvIG, and go see the eye doc on Tuesday.

If isn't any better on Monday then we will do a surgery for her sinuses on Wed. To reshape them and help them drain better on their own.

So basically she get a lot better in the next 3 days or we go ahead and do surgery on Wednesday to clear this thing up. If the culture comes back positive then we'll have to go back down today too.

There you go. Now just add one more drug to that picture from the last post in your mind and you'll know what our microwave now looks like. :)

Abby's new meds

2007-02-21T19:57:00.000-07:00

Honestly I don't know how she does it. She is on yet another new antibiotic to help her fight off her roaring sinus infection that we found out about on Monday. We took her down to get another sinus CT (CAT scan) because she has been so miserable lately. Coughing at night and carrying a bowl around sometimes during the day. Other times she seem full of energy and is just playing outside seeming rather normal. She's a little trooper.

Now, after looking at the top of our microwave and seeing this whole new batch of drugs I think I see why Abby's not feeling so good. I mean who would feel good with all of these medicines?! And man, what would she feel like without them? Tonight I gave her an anti-nausea, a cough med with codine, some antibiotics, zantac, Tyleno, and I still have to give her the two chemo drugs later tonight. Crazy.

She's had a pretty high fever off and on for the last week. 10 days ago it was 103, and then last weekend it climbed to 102 and then hung out for a few days at 101. Today it went away for the afternoon but was back at 101.5 this evening. Pray that it goes away tomorrow becuase if it doesn't then we'll probably have to take here in again or admit to the hospital.

The treatment plan is this:
3 weeks of the antibiotic and then we'll do another CT. If it is still there then we'll talk to the Ear, Nose, Thoat Doc to see what to do next, maybe another 3 weeks of antibiotics, maybe surgery. So, please pray that this sinus infection will go away soon!
Tuesday she will also be going in to CHOA for a spinal tap, chemo, IvIG, and an eye appointment with Dr. King. This Friday, we have an appointment with the GI Doc. to see what's up with her tummy and what the appendix thing is all about.

So, that's our boring life. Sorry there's not too much to talk about :) Pretty typical her at the Schreibers' house! No really, I'm doing ok with it even though I'm a bit tired and also sad about all that she's had to go through. Tiffany has her good days and bad days too. Anna and Lily are pretty oblivious so they've been fine. Please pray for our family, for Abby, and for all the germs to take refuge into somebody elses house for a little bit.

Thanks for checking in!

.

ER Sunday

2007-02-13T12:02:00.000-07:00

Hey all,

We're still hanging in there. Actually I'm doing pretty good with all of this sickness stuff. I tend to do better when things are most definitely out of my control. These last couples months have been just that. Now, don't get me wrong, I would love to have a healthy family for more than a week but that's just not the case right now so I'll have to be ok with that.

Abby spiked a big fever on Saturday morning and it didn't come down by Sunday morning so we had to take her to the only place that was open, the ER. Not the best place to go if you don't have to... just my opinion. They actually were pretty good there. They checked her out, listened to her lungs, accessed her port, took blood, ran a CBC, and did a blood culture. Her fever was still in the 102.5-103.5 range so they gave her a shot of Roseffen, an antibiotic, just in case she had a blood infection. I assume the culture was negative since they didn't call back.

Abby's fever is gone now, her cough is getting better but I think Anna is getting it now. Lily already had it and Tiffany too so I guess Anna is the last one for this virus unless I catch it. I think I have it, but it has been tolerable for me. Tiffany also had something, it turned into a sinus infection so she went to the doctor yesterday and they put her on antibiotics. Hopefully she will fell better tonight.

So, that's life in the sick lane. Isn't it fun? I am definitely looking forward to Disneyland... I think we are all going to wear masks on the plane though!

Later

RSV?

2007-02-11T07:21:00.000-07:00

Well it looks like Abby may now be the winner of a new virus called RSV. I told her to choose door number 3, but she went for door number 2 and now... RSV.

Actually we don't know for sure if it is but they are treating her like it is since RSV peaks in Feb and Jan. Lily had a cough last week, and Anna didn't feel too well either so it probably finally just got to Abby.

Yesterday morning, while I was gone, Abby spiked a big ol' fever so Tiffany called Dr. Smith at CHOA. They put her on a double does of her weekend antibiotic since that one covers for pneumonia and we really don't want her to get that! We did the old ibuprofen & and Tylenol tag team to get her fever down and I gave her a little codeine/Tylenol so that she could get some sleep last night. She seem better this morning and she slept great last night compared to the night before.

On the tummy side she is doing ok. They still have her on the anti-protozoa med every other day until we can see the doc again at the end of the month.

So pray that both of these goes away quickly and that other infections stay at bay.

That's all the medical news from the Schreiber household. Everything and everyone else is going real good but we all are looking forward to the spring!

Upper GI

2007-02-09T11:37:00.000-07:00

Well, Abby had her upper GI on Tuesday and things went fine as far as I know. She just had to fast for about 12 hours and then drink some radioactive stuff so they could watch it go down into her stomach. The test was painless and only took about 30 minutes. Tiffany went with her and she said it was kind of neat to see it swirl down to her stomach.

I guess this test is to see about any ulcers or problems with the lining of her stomach. We'll talk to the GI doctor about it near the end of the month. We could get an earlier appointment with him but the end of the month one he will be here in Fort Collins so that is much better than driving down to Denver again.

I think her stomach is getting better slowly but surely. She seems to be feeling good except for a bit of a cold.

I can't wait till cold season is over and we can let them out of the house to breath some fresh air. Ahhhhh... spring will be here soon.

Biopsy results

2007-02-03T13:08:00.000-07:00

Just a quick update to tell you about Abby's biopsy results from her tummy. On the cancer side things are great, no cancer cells or anything unusual found

As for infections, she has one. They started her on an antibiotic that seems to cover for protozoa and such. Anyway, she'll be on that one for a week to 10 days. We have an upper GI test scheduled for Tuesday and then a follow up for all of this stuff on a Friday at the end of the month.

It will be nice to talk to the doc and see what all he has to tell us.

See ya.

AWOL Appendix

2007-01-30T21:20:00.000-07:00

So we are back from our Chemoscopy Tuesday and all went well. It was kind of like a progressive dinner but instead of parts of a meal we focused on different medical procedures... just like a progressive dinner though at the end Abby got dessert, a gianormous Popsicle!

So IvIG went well, as did the Vincristine. Abby's counts were great, actually a bit too good. Other than being really hungry at CHOA and unable to eat since the night before and unable to drink after 9am she was in good spirits. Things went really quick and in only 2 short videos we were out the door and on our way to the surgery center 15 miles away. We checked in and got everything all filled out and such. Abby was very excited to be able to eat a Popsicle when she got done and also was looking forward to being pushed around in the bed with wheels. The doctor actually took her for an extended ride around the recovery area before taking her into the surgery room.

40 minutes later she was done with both top and bottom "oscopies" and the doctor came to show me the nice color pictures of the inside of her colon and stomach. I know lovely! Good for show and tell later I guess. He gave us 3 copies of each, I don't know why so many really, maybe he is just very generous.

He took biopsies of her stomach and colon and is going to have some tests run on them. We won't know about those for a few days or a week. But that wasn't the big news. The big news was that her Cecum and Appendix are not where they are suppose to be. Wierd I know. Remember my family is different, refer to previous posts if you need a reminder. See her a the Schreiber house we try to do things in creative ways. Sometimes it's interesting colored pages that the girls draw, sometimes it's the care bears dressed up in Barbie clothes, and sometimes we just really try to get creative with how our organs are placed in our bodies. Yup our organs.

So they found the appendix if you are still wondering. It's just not in the bottom right side of her like it should be. Instead it is in the upper left quadrant. When he said it was in the upper left quadrant I really didn't mind because I had no clue as to what he was trying to say. I still don't really know what he is trying to, or not to, say about this condition. All I know is that it's about 180 degrees out of phase with the normal human. Did any of you ever watch X-Files? Just wondering.

Anyway, they'll be doing some more tests on her this coming week at PVH her in Fort Collins. Basically they just want to get an idea of where the rest of her GI track is. I guess that is a nice thing to know.

Well, that's all for now on the case of the AWOL Appendix. Stay tuned next time to see where the rest of her organs are!

PS. For those of you that have watched X-Files in the past, I can assure you that none of the future test have anything to do with bees, clones and or any vaccine that I know about.

Tuesday Chemoscopy

2007-01-27T17:44:00.000-07:00

Look, I made a new word "Chemoscopy"
Chemoscopy-- Definition: (Noun, Adjective, and Verb.) Pronounced-- (Kee Mo Os Cope ee).
1)To drive to Denver for many procedures. 1a)The act of lots of procedures being scheduled for the same day. 1b)To describe a day filled with medical devices such as small intestinal cameras, fiber optics, laxatives, access ports, IvIG, and chemotherapy. 1c)To give multiple procedures that have to do with chemo, and multiple "oscopy" procedures in rapid succession on one day. "Abby will have a Chemoscopy on Tuesday, Mark told his concerned friends."

Yup, you got it. It's Chemoscopy Tuesday next week. Here's the day plan give her multiple laxative for about 12 hours before. Drive her down to CHOA where they will give her Vincristine and IViG in 2 hours instead of the normal 4 hours. Then by 10am ish we will give her some other lovely looking "clearing" device to help the colonoscopy go better. We will arrive at the outpatient surgery center where they will put her under for the procedures, and endoscopy and colonoscopy, to determine what might be going on.

So you say, "where did all this come from?" or "When did this all get scheduled?" Well, just on Friday, so get off my back. I can only type so fast! :) just kiddin'.

Ya, so Friday Tiffany took Abby to the GI Doc and they decided to try to get this all taken care of on the same day that we have chemo/IViG schedule, Tuesday. By Friday afternoon they had it all scheduled. They don't think there will be much to see but with her tummy being in such disarray for such a long time they want to make sure there isn't something more going on. They will also be able to take some biopsies that will help them to determine what is going on. I'll be glad when we have something more solid, no pun intended... actually it was, to go on. Get it all figured out, that's what we'd like.

They think it is probably just some reaction of the bodies to the virus that she had where the body stops processing foods the correct way. If that is the case then we will just have to do some dietary changes until she gets back on track.

Well, that's it. Pray for Tuesday.

GI doc Friday

2007-01-25T22:46:00.000-07:00

Well, Abby still is having tummy issues. Nauseous in the morning sometimes and well... lets just say she isn't exactly happy in the bathroom yet. It's been about a month and a half now. We had her on immodium for a few days in a row and took her off of it on Monday and back to the same old. We called CHOA and they wanted us to get checked out soon since the immodium should have taken care of it all for good. They got us in to see a doc that they work with and bonus, he's in Fort Collins on Friday! So no need for a trip to Denver. Actually the funny thing is I still have to go to Denver for a conference on Friday and a luncheon on Saturday. Then next week, Tuesday, I'll take Abby back down to CHOA for another round of chemo. After this one we only will have 2 or 3 more! Yippee! Crazy.

Other than that, the pink eye is gone... we hope. Tiffany looks like she is getting another cold and I think the girls might not be that far behind her. Oh well, what can you do? We can't just stay cooped up in the house every waking moment. Maybe Abby will fight it off! She is getting IvIG on Tuesday so who knows.

That's about it... Oh ya Abby's B-day is coming up at the end of the month! The big 5 0 minus the "0" so I guess that's just the big 5. I'll say it again, crazy! That should be a good B-day, we are excited.

Have a good night!

Still getting better

2007-01-20T07:16:00.000-07:00

Does it seem like forever to you? It does to me. But now think things are finally on the up and up. We are half way threw the drops for the second round of pink eye (Abby, Tiffany, and Lily). I'm praying that we will get that all over with soon.

As for Abby's tummy issues, they are still there. I took her down for her 3rd fill up on Monday afternoon and they checked her out and topped her off with some fluids. I'm thinking of getting a frequent fill up card for her to see if we can maybe get one free soon. They had us take another sample in for testing to the lab but I haven't heard anything back from that so I assume it was another negative test. They finally let us put her on immodium and after a few doses that seemed to do the trick for now. I don't know how long she'll need to be on it, probably just a couple more days.

Lily has 4 teeth coming in on the top all at the same time so she hasn't been real happy about that... now I know why she is always trying to chew on our Zantac bottle! We've since bought a chew-toy for her... wait is a chew-toy what dogs get? Maybe it is a chew ring or something like that.

We'll Abby's not feeling good this morning so I'm going to go help get some food in her tummy. All in all we are doing good.

Thanks for checking in on us!

My Family is Different...

2007-01-07T09:28:00.000-07:00

As I was watching Lily chew on the top of Abby's mega Zantac bottle the other day(don't worry it was closed!) it struck me that my family is different than most. I know, news flash did someone forget to tell me!?

So, Abby got sick again (after the pink eye) in the tummy arena on Tuesday. She had such bad issues (ie. diarrhea) that we took her down to CHOA to get checked out. She was dehydrated so they plugged her into some fluids for an hour and a half to rehydrate her. See that's what I mean... different. I mean your kid doesn't get sick and just go get plugged in to fluids. Sometimes I feel like she is a little car. "Plug her in and get the coolant flushed and don't forget I have a frequent buyer coupon." Different.

Maybe other families went put their kids in the Christmas pageant without a mask and their kids are still sick but I don't know of any. Different. I guess I could have made her a cute Christmas Angel mask with glitter and stuff but that just seemed kind of sad to be honest. She was a cute Angel though... I'll have to post some video.

So, as you can tell, I'm a little worn down... we all are a little worn down. We're trying to keep our chins up, find the best in things and not become a product of our circumstances but to be honest, it's still tiring. Just like the snow here in Colorado, it just keeps coming. Cold fronts and "Cold fronts". I'm really hoping for a change in the metaphorical and real weather around here.

So, here are some requests if you are the praying type:

For us to all get better (Tiffany's cough, my sinus infection, Lily (whatever her deal is) and of course Abby's health.
For us to see the best in what is set before us.
For the Lysol to actual work.
Good nights sleep.

I hope you all are doing well. I'm sure that we will be healthy soon... it just can't go on for more that 30 days in a row can it? I'm going to believe not.

Two words... Pink Eye

2007-01-03T11:27:00.001-07:00

Enough said.

Ringin' in the new year

2006-12-31T21:08:00.000-07:00

We'll it's 9pm and everyone is sleeping. I figure it's midnight somewhere so why fight it, I might as well just go to bed :)!

Actually, even though everyone has been sick and Tiffany is still pushing through the cold it still is a good night. I mean honestly I can get down about these circumstances but when you look at the whole picture... we are doing great! Remember 2 years ago? I had the flu, Tiffany had the flu, Abby had the flu and was in the Hospital getting a Broviac put in, bone marrow taken out, and a spinal tap with Methotrexate. So again, this is nothing really.

Perspective.

What a crazy time. Tiffany and I were talking and saying that it seems like it was 5 years ago that this all started, not 2. Yet in some ways it seems like just yesterday.

With all of us getting sick this break and the 3 feet of snow there has been a lot of time to think and that's been really good. Last year I think we kept ourselves busy enough to not have to think about the previous 12 months and that was good. But all this time to think about it this year has also been equally as good. It has really made me and our whole family a lot different in who we all are... and once we can start to leave this house again maybe you all will notice! But really, things are good. We would like to get out some more and Tiffany and I are definitely looking forward to being able to put Abby and Anna back in Sunday school or take them to germ infected play room in the near future. Actually I bet it will be pretty hard not to hose them down with sanitizer or burn their clothes when we get home but I'll cross that bridge when I get there.

And there is coming up soon! When Abby is done with this round of chemo we should have only 3 more to go (slight chance of 4 but I'm holding out for 3). That sounds weird. She'll be done in 3 months. Done. Weird. I don't know if I'll be relieved or just stressed about it coming back. I'm going to shoot for relieved with just a tinge of stress on the side. Anyway that is going to be a really nice belated Easter present. Maybe we'll chance it and take her to an Easter egg hunt... outside of course... with a mask. Hey with 11 days to go on Easter Sunday I may just for go the mask... we'll see.

Well, I got to mention 3 new years and an Easter here in one post so I'd say my job is done.

Happy New Year!

Give us this day our daily meds

2006-12-31T14:34:00.000-07:00

Hey just a quick update of the drugs that the Schreiber clan is currently on.

Abby:
Dexamethasone (grumpy/hungry pill)
Vincristine
Methotrexate
6-MP
Benadryl (just because)

Anna:
Benadryl (why not?)
Robitussin

Tiffany:
Ibuprofen (sore throat)
Cough drops
Ocean spray
Tussin

Mark:
Augmenten (antibiotic)
Anti-inflamitory
Tussin
Benadryl (just kidding!)

Lily:
All of Tiffany's medicines while nursing
Tylenol
Diaper rash cream

The Fish:....
I probably should feed it but it seems to be doing OK.

Ahhh... we are ready for the new year! Yippee!

Actually, we are all doing pretty good. Abby has done great during this round of chemo. Still lots of "hold me's" and such" but otherwise really good.

Tiffany has the cold that we all had finally and I think Lily has it a bit too.

I have a sinus infection and I'm starting my second round of antibiotics (just got off Amoxicillin). Hopefully this will kick it.

Anna went to the doc with me yesterday and she got a chest X-Ray. Everything seems to be going good, they just wanted to make sure since she has been sick for soooooo long.

Well, that's the update! Hope you all have a happy new year too! Stay healthy and wash those hands!!

Chemo before the storm

2006-12-28T16:18:00.000-07:00

We just got back from Denver... What a drive it was! Yikes! Lots of snow. Another 1-2 feet expected tonight. Denver seems to be getting more than we are. I guess shoveling will once again be in my future... round 28 I think. Maybe since Abby will be on Dexomethosone again I have her help shovel. They increased her dosage so that should be fun. Not really.

I feel like we moved to Michigan or North Dakota or something... so much snow! Piles everywhere and more is on the way. At least it is pretty.

Well, once Abby is done with this round she'll only have 3 more chemo's to go (maybe 4 but I don't think they'll tack that one on... we'll see). I'm so excited. Nervous but excited. It will be really weird when we don't have to give her nightly meds and such. Weird.

As for the sick front in our house, it seems that a high pressure system is starting to move back in to our house. Some of the pressure still seems to be lodged in my sinuses and maybe Abby's too but otherwise the big bad low cold pressure seems to be on the way out. Whew!

Well, everyone is back up so... off to hold Lily!

We'll be Home for Christmas

2006-12-22T18:38:00.000-07:00

So where still here... in Colorado. The 2 feet of snow didn't help us get on the road to Idaho in time but that's not the main reason that we'll be staying home this year.

As you know Abby's been sick. Actually, Abby, Anna, Lily and myself have all been sick... Tiffany is taking good care of us. I have a sinus infection and Abby has the same cold I think. Lily seems like she is getting it today too so we'll just have to see how everyone does. Abby went into the local hospital to get some blood cultures done for the last couple days and a shot of Rocefin (sp?) antibiotic. She seems to be doing fine but they wanted to make sure since she was running a 101 fever and spiking up to 102.5 at times. Her fever broke today and she seems in good spirits.

We almost didn't make it back from the hospital on Wednesday since we had to go over during the blizzard. I dug us out of the parking lot with a basket and we made it mostly into our drive way before I gave up and left it there. Since then it has been about 15 rounds of digging to get various vehicle out of the snow and clear a path in our driveway. It was a nice neighborhood even. Everyone was digging and now we all have a mountian of snow in our yards!

So we are staying home. Maybe we'll all be healed up by new years! We'll see.

Still sick

2006-12-18T21:28:00.000-07:00

Hey all,

You can be praying for Abby. She isn't feeling good at all. Walking around the house for the last week with a bowl in her hand in case she throws up. It's just a stomach virus, Anna and Tiffany also had it, but for Abby it is lasting a lot longer. That's pretty common for people with low immunities like her but still not fun. decided that I would not get their stomach bug and did everything in my power to keep it at bay... Instead I got a major sore throat and now I can barely talk. I was reminded though as grated through the pain of swallowing and eating from the sores in my throat about how happy I was that Abby have very few if any sores from the chemo last year. So, at least one good thing from this cold. It also reminded me how happy I am that Abby isn't like this all of the time like she was during some of those first few rounds. Man those were rough.

Still, it makes us sad having to see her like this for so long, pushing 9 or 10 days I think. We were up with her last night till about 2am and then again at 3:30. She seems to be eating and drinking better today and she hasn't thrown up so that is a huge deal. We are hoping that it will work it's way through and be done soon, hopefully without having to go to the other end of her system before it is all done and gone!

Well, lets just say it's been a tiring month. We did have a little reprieve while Tiffany's mom was her but then we all got sick again. I guess that is part of this winter season.

Pray that Abby will feel better and that she won't throw up her medicine again this night. I haven't been able to give her her chemo for the last 2 nights.

Chemo and the Christmas Angel

2006-12-06T13:30:00.000-07:00

So Abby is on chemo again this week. She had a tap on Tuesday and we started her Dexamethasone (grumpy pill) a day early so that she would be done by Saturday since she is in the Christmas program at church... She gets to be an angel with a little group of girls. I think she'll have a good time. I'm not so sure about Anna though, she is a bit scared of large crowds of kids right now. She also hasn't been in Sunday school for a couple months becuase of the chicken pox thing at church. So, we'll see.

Over all Abby is doing good. The spinal tap with fine yesterday and Anna even stayed there in the room with her all wide-eyed watching everything that they were doing to her sister. She has been really getting into the protector and comforter role when Abby has to get a shot or wash her nose out. Anna just stands next to her and pats Abby on the foot or something like that. Pretty cute and loving.

Since Abby was already on the steroids for a day, she was quite hungry at CHOA. Anna tried to eat everything that Abby was eating but by lunch time she had hit her limit. Abby still was hungry and kind of in the "you gonna eat that?" mode wanting all of Tiffany's food too! Crazy how much she can eat.

Well, that's the breif but true update... I'll tell you how the Christmas program goes later.

Everybody's sick... but Abby

2006-11-26T19:55:00.000-07:00

Hey all.

Just a short post to let you know that Abby is still doing good though the rest of the kiddo's are sick. Anna isn't doing good at all. Her eye was all red this morning so we'll see if she has an eye infection from this long cold of hers. Lily has her first cold too and isn't too happy about it. Tiffany and I had something but only for a couple days... we must have slept it off. Maybe it was the antioxidant effects of large amounts of turkey who knows.

Anyway, pray that they start to get better and Abby can remain unscathed. Also that she doesn't get anything else that might turn into another sinus infection!

Happy post Thanks Giving and a pre-emptive Merry Christmas!

Contemplative

2006-11-14T20:32:00.003-07:00

Tonight I've been in a contemplative mood. Listening to music, thinking about our life: past, present and future. Sometimes it is just hard to believe that Abby has/had cancer... I've been watching this slide show of Tiffany's favorite picture on her computer screen saver. Lots of memories there. Lots of pictures of a puffy-faced Abby. Of a bald Abby. Of an Abby with a "peach fuzz" head. Crazy. I look at those old pictures and I just have a hard time that that is and has been our life. Just very surreal. I'm glad I have these posts to re-read and pictures to look at to remind me and bring the highs and lows back to my mind.

Anyway, on the Abby (present tense) front, things are going good. She still is complaining of not feeling good. Her appetite is sometimes good and sometimes not good. She was running a low fever the last couple of days but I think that is gone now. IgG can give you a fever and also make you achey so who knows. She is a bit stuffy again and the cough is back but we are just watching it to see how it all pans out.

We don't have to go to Denver this week... that is nice, it seems like I've been down there every week lately! Other than life just keeps moving. It's a wild ride in so many ways so we just are holding on tight to see where it all goes!

Later all.

Sinus news

2006-11-09T06:21:00.000-07:00

Hey sorry for the delay in the Sinus updates but here is the scoop:

Abby had another CAT scan (CT) and chemo last Friday. Dr. Smith looked at the CT Monday and said that they look really good, a dramatic improvement.
The Ear Nose Throat (ENT) looked at them on Tuesday and said that they look good. I'm not completely sure what the ENT said we got the info second hand from a nurse at our clinic.
If the sinus infection comes back then they will need to do surgery to clear it all up.

So, Abby is off antibiotics and we are just waiting to see how it all progresses. We're still doing the nasal rinsing as much as we can remember to. Abby is doing better with it now and even Anna gets involved by standing next to Abby and telling her it will be alright... pretty cute.

Abby goes down for IgG again tommorow and we are praying that that will give her the immunity that she needs to fight off any colds or reoccurances of the sinus infection.

See what else... oh Chicken Pox is going around our church so Abby can't go to Sunday school anymore. Once the last case has surfaced we will be able to go back 21 days later. We are trying to be positive about it but it is still a bit of a pain especially since they have a vaccine for Chicken Pox now. If everyone had the vaccine then this would be less of an issue... oh well.

Abby just finished up her last Dexamethasone (ie. grumpy/hungry) pill for this chemo round. She is doing pretty good, a bit tired but good.

That's it for now.

Hope

2006-10-29T20:05:00.000-07:00

It's been a long couple of weeks. Abby is up and down. Good mornings and still mornings when she thinks she is going to throw up or just "doesn't feel good"... as she puts it. She really doesn't like having saline water rinsed up her nose either. I bet it feels like getting pounded by a wave in the ocean while all the salt water goes up your nose. I never did like that sensation. Anyway we haven't been doing the salt water wash lately and in the last couple of days I think we've started to just loose hope a little bit resigning to the seemingly imminent surgery to clear this thing up. I mean why put Abby through all of these nasal rinses if she is just going to have it all scrapped out in a few weeks? So, as you can see our hope is definitely waning.

Tiffany read me a quote this morning that brought me to tears and renewed my hope a bit so I thought I should share it with you all...

"There are three ways of committing suicide---taking my own life, letting myself die, and letting myself live without hope. This last form of self-destruction is so subtle that it often goes unrecognized and therefore unchallenged. Ordinarily it takes the form of boredom, monotony, drudgery, feeling overcome by the ordinariness of life.
We begin by admitting in the inner sanctum of our hearts that the Christian calling is too demanding, that life in Christ Jesus is too sublime. We settle into a well-worn groove and lose the stuff of gospel greatness. We become like everyone else, fail ourselves and the community by failing to respond to the living, vibrant, magnificent image of Christ that is within us waiting only to be expressed."

We started the nasal washes again this morning. That's all I have to say to that :).

Navy Academy

2006-10-26T07:59:00.000-06:00

Well I'm at the Navy Academy in Annapolis Maryland right now for a tour and it's been a great experiance. They have a great program... I wish I had gone here when I went to school, really neat place here. Maybe one of the girls will want to come here some day. They have great vision and the students here are incredible.

Anyway, Tiffany is home with the girls by herself so pray that the girls are good for her. It sounds like Abby is still up and down depending on the day and time of day. I'm still praying that she does good. We will go on down and get another CAT scan next Friday at CHOA's new office... yep CHOA, Abby's clinic office, is moving to a new location. We will still do most of our hospital stuff at Pres/St. Lukes. The office is moving further south to Littleton Colorado, the drive will be about another 1/2 hour but that shouldn't be too much of an issue. It is a bit hard to say good-bye to the place that we started this whole journey in but I'm sure the new place will feel like home too.

Anyway, I'm tired so I'm going to go rest... the Navy works your hard out here. Pray that Abby's Chemo and CAT scan go well next week.

Bedside Blog

2006-10-14T08:19:00.000-06:00

Sitting here at CHOA listening a mom of a patient and a teen age patient talk about cancer. It is a common occurrence here, different chemo drug references flying around and medical terms. IV benadryl or oral and the effect of it is the current topic of conversation out there in the hallway. Just a few minutes ago it was all about treatment end dates... wait, I just heard the conversation change to crack and heroin and how one of the kids is like she is on PCP when she is on steroid drugs... I concurr with that statement! It's an interesting mix of conversations here, some comforting some depressing. How are your counts? How did the IVIG make you feel.

Speaking of IVIG or IgG (gamma globulin), that is the reason that we are down here again. We actually are here a week early because Abby hasn't been herself lately. She wasn't too bad until after the last treatment and then she just went down hill. Wanting her blanky all the time, eating a ton, and throwing up in the morning a couple times a week. Cough, green snot, and just the overall blahs got us in here quicker.

Dr. Smith was wondering if she had a sinus infection and he wanted to get a CAT scan of her sinuses like he did last year. Last year they were all clear, this year... not so good.

I figured it wasn't good news when he called me back to his computer to check out the pictures from the CAT scan. When the ENT (ear nose and throat) doctor, came in with us I really figured it wasn't good. The ENT gave me a nice drawing of where all the sinuses are and how they should be all air and look black on the CAT scan. He then proceeded to show me how, in the pictures of Abby's sinuses, they were all gray and white with very little black in most of the cavities... not good. What it is is a major sinus infection. Honestly I can't believe she just walks around with it and self medicates with her blanky and by sucking on her fingers... getting held by us when she can. If you've ever had a bad sinus infection then you know what she must feel like. The think is she doesn't really know how to describe it... she doesn't really know what a headache is probably. She just knows that, in her own words, "I don't feel good daddy". Makes me sad. But now we know so we can treat it.

So, she'll be on antibiotics now for 3 weeks and then get another CT (CAT Scan). If that shows that it is all cleared up then great... if not, then she will have to have a sinus surgery to clear them out and see what type of bug the infection is so they can then give her more antibiotics, IV antibiotics if it gets to that point, that are targeted for the specific bug.

Dr. Smith is optimistic since we now know why she hasn't been feeling good. He is giving her a 30% chance that the antibiotics will clear up the infection. The ENT is very nice, was very helpful, and draws a great picture of the sinsus cavities... but he only gives her a 15% chance of the antibiotics clearing it up. I hate percentages so I'm just going to pray that it clears up and that the antibiotics help it all clear up.

He told me a bunch more stuff about surgery, the risks, the potenial complications, and some what if scenarios for people with a supressed immunity but they aren't real pleasant, so I'll keep them to myself for now.

I'll keep you all posted as we go. Pray for the antibiotic that she is on to be the best one for this bug and to not give her any major side-effects like intestinal stuff. Thanks.

Ahh the fall

2006-10-10T19:03:00.000-06:00

Ahh... I love the fall! Bright colors on the trees, orange pumpkins, and all the fall festivities. It has been typical Colorado weather lately, sunny and 80 on Saturday followed by low 50's and 30's at night last night. Crazy.

Abby just finished another round of treatment last week. Dexamethasone for 5 days ,which made her quite hungry and grumpy this time, Methotrexate Monday's and the normal nightly 6-MP plus the one does of Vincristine. Tiffany's parents were here for most of the week and that was really helpful.
We did light the night on Friday and Robin and I went over with Brianne to check out the acoustic Ninja (www.acousticninja.com) and Brianne stayed for the headliner. The Light the Night event was fun, but registration was a bit confusing. It seemed like you had to donate $100 just to register but you didn't really have, it was just a suggestion. Kind of threw me off. Anyway, the walk was good but Abby got tired and whiney about 1/4 of the way into it so we just waited until they all came back around and let her rest. She got tired easily this round, kind of weird. Made me sad but that will have to be another post.

Overall, this round was great. Abby did ok, and it was full of fun activities. Hope this finds you all well.

light the night

2006-10-02T21:40:00.000-06:00

Hey all here is the info for Light the Night, the Leukemia and Lymphoma's annual blood cancer awareness/ fundraising event.

It is in Old Town Fort Collins this Friday the 6th. The festivities begin at 5pm until 7pm, the walk starts at 7pm. I think we will show up around 6pm ish if you are looking for us. If you are going to come let us know and we'll look for you too. I'm not sure if we'll walk since Abby just started chemo today, we'll see how she feels.

So far so good but we did just give her the first of the grumpy pills at dinner. The doctor visit went well today. Tiffany took down the whole little herd of girls and they did fine. Abby got a flu shot and her Vincristine so we need to get our flu shots now too. Abby's stomach hasn't been feeling to good for the last couple weeks and she's been throwing up about every other day in the morning so we started her on some new medicine, Carafate. We'll see how it works, she's only been on it for 2 days and she didn't throw up this morning so maybe it's working.

Other than that, it's the same deal around her just with some added fall colors... ahhh I love the fall!

Till later

New End Date :(

2006-09-24T07:56:00.000-06:00

I have to tell you, my heart sunk when Dr. Smith said, "looks like that will be May 13th. I'll write that down up front so we don't forget." You see, they've been saying Feburary for a while and I wanted to get the specific so I asked... Let me back up a bit.

Abby and I went down to the CHOA office to get the IgG therapy on Friday. It takes about 5 hours to do the whole thing so during my time with Dr. Smith I asked him when the exact date would be that Abby would be done. He said probably Feb. but that he would check. He looked at the protocol that she is on and it said that the kids are done 2 years from the start of Interm maintenance. He proceeded to look on back in the chart and said, "May 13th.", that is when my heart sank. I was thinking that they would tell me it was the end of Feb. or maybe even the beginning of March... but May? Ouch. That's like 90 more 6-MP pills and maybe even another spinal tap. That's 15-20 extra days of a grumpy, hungry steroid girl... That means that we wouldn't be done until after our celebration trip to Disney Land.

That's why my heart sank.

He left, and I started to think. I thought about all the things above and tried to gear my mind up for the new time frame. Then I started thinking... "That can't be right." I had to be wrong. I got out my trusty CHOA folder and the protocol that she is on and started reading it myself. In our book Interm Maintenance started April 19th, still not great but at least a month better, only 60 pills and probably no extra spinal tap. I thought that I might have to check the blog to see if our records where right, another good reason to keep a blog huh!?

Anyway, I finally talked to one of the nurses, and asked them to see if they could reconcile the differences in what I found vs. Dr. Smith. It turns out that April 19th is it.

So, a new end date but a firm one. April 19th. Still sounds a lot further away than Feburary. Oh well. I'm still a bit disappointed but I also want everything to be ok when she is done so an extra 2 months is probably good insurance.

Change your calendars! Now you get 2 more months of sporadic blogging! Yippee for you!

I like the Night

2006-09-18T22:40:00.000-06:00

I love the night times around our house. Everything is quiet and peaceful.

I have a little routine that I do every night whether I want to or not. Yep you guessed it, it has to do with Abby's meds. Every night after I make the coffee, I douse Abby's meds with chocolate syrup and set it on the sink in the bathroom. I then go into Abby's room and scoop up my daughter in my arms with her head on my shoulder. She is ussually pretty out still but yet she somehow manages to give me a couple little pats on the back as she settles her head onto my shoulder.... I love those little pats. I really have no clue why she does it, but for me it is a nice little comfort, especially on the nights that I don't really want to give her her meds; tonight is one of those nights. Methotrexate Monday. That's what I like to call it, actually I don't know if I really "like" to call it anything but none-the-less I do. Monday's are the nights that I get to tell her in her sleepy state to open up for the "big chocolate medicine". She then gets a chaser of Benadryl and some water to finish it all off. I'm sure it would actually be a pretty good tasting little dessert... well if it didn't have the chemo in it.

Know what? Methotrexate is now on the acceptable list of what you can be on and still be able to give blood. Hey, I just thought you should know. Now you do.

Anyway, like I was saying, I like the nights. What struck me tonight, while engaging in this compulsory routine, was the fact that she has changed a lot in the 21 months that we've been doing it. For one thing she is a lot heavier than she was, up in the 40 pound range now and tall too! But as tall as she gets she still fits just as well on my shoulder. She is more compliant in this whole process than she used to be too. I still pick her up very carefully under the arm pits, careful not to pull on the "tubie" (Broviac) that has been gone now for almost a year. Ah, I'm so glad that that thing is nothing but a small scar, in flesh and memory, now. It was a lot of work to keep it clean and not pull on it while playing. I could go on and on..

But I won't. Instead I'll enjoy this peace and cherish those little pats, a really good part of a hard routine. Maybe when all of this is done I'll get her up anyway and take her to the bathroom... just for that little Abby pat on my back.

Good night

2006-09-10T15:15:00.000-06:00

Only 6 treatments to go.

2006-09-10T11:13:00.000-06:00

Hey all,

Abby took her last Dexamethasone of the week this morning. We celebrated. This week was a pretty sad week for Abby, she was very emotional and very hungry. She's almost eaten an entire box, a very big box I may add, of corn flakes this week! Last night she put down 1 large ear of corn, 2 chicken thighs, and a good helping of quinoa (did I spell that right?). When she was all done she asked if Anna was going to eat her other half of corn!

She's been going to bed early every night and constantly sucking her fingers with her blanket close by. Basically just not herself. Hopefully she'll be back to herself soon.

But like I said, only 6 more to go! Yippee! We talked about how she'll be done soon and what happens after that. She asked if she will still get "pokeys" I said, "yes, in your finger though because they'll take your port out when you're done." She said, " I don't like those kind of pokeys." I think it will be better than the port though!

So, as you can see things are going pretty good. I love the fall here in Colorado so that makes even weeks like this more than just bearable. Maybe we'll have to go check out the Scotish/Irish festival up in Estes Park today, or maybe we'll just all rest!

Abby is pretty good

2006-08-29T19:50:00.000-06:00

Just a quick post to let you all know that Abby is doing pretty good.

She still has some hard days, more often mornings, but overall she is much better since the IgG infusion.

Thanks for your thoughts and prayers.

IgG Therapy

2006-08-19T14:34:00.000-06:00

Abby is still sick.

She's been on one round of oral antibiotics and then they took her off of them since it was causing some tummy problems for her. Last week CHOA asked us to go get Abby checked out from our family doc her in town, Dr. Samuelson. He put her on Azithromycin to see how that would work. She has one more day of that prescription.

Yesterday Dr. Smith from CHOA, Abby's Oncologist, called to give us the results of another type of immunity test that they took blood for during the last time we were down there. She was fairly low on that one so they are recommending that we start her on IgG therapy once a month. Basically it is an infusion of gamma globulin and stuff that will boost her own immunity without increasing her white blood cell production. It is kind of like a blood transfusion and so it will take several hours to do. IgG is made from human plasma and has been used for some time now to treat people with low immunities that continue to get sick. You can read more about the therapy here or go to: http://www.iggamerica.com/patients/faq.html.

So we'll be off to Denver this coming Thursday, pray that it goes well. There are several common side-effects with this treatment but they all seem pretty minor and overall she will probably feel much better than being sick is making her feel.

I'll tell you all how it went next weekend.

Finishing up this round...

2006-08-12T07:39:00.000-06:00

Hey all

Abby is right near the end of this pulse of chemo. She still has a nasty cough and bit of the left over cold. The doctor never called for a CAT scan of her sinuses, instead they just put her on a type of Amoxacillian for 21 days. She's been on it for about 11 now but it doesn't seem like she tolerates it very well so right after we refilled the prescription they took her off of it... Anybody need an expensive bottle of liquid antibiotics? Actually, don't answer that. I probably shouldn't be the antibiotic dealer for you all.

Abby's been up and down for this round. Some days are great and some are harder. She mostly has just been a little duckling of sorts, always wanting to follow up around and be held. She should finish up her Dexamethasone (steroid/hungry pill) tomorrow morning.

It was nice that this last time she didn't have to get a spinal tap. Actually she will only have about 3 more until she is done! I think she does a lot better these weeks when she hasn't had the spinal tap.

Other than that, things are relatively normal for our life. School is starting for me and the kids are back on Monday so that's been a little crazy. Anna has decided to carry over some of her "terrible twos" into the 3 year old realm, but not too bad. And Lily... well, she's just doing the baby thing. Finding out that she can control, somewhat control at least, her hands and smiling all the time. Tiffany is doing great being a mom of 3 and no hairs have turned grey as far as I can see. It definitely can be challenging but, for the most part, I think we do OK.

Till my next entry... bye!

PS, Erin & Rich H. I haven't been able to find any contact info for you guys. email me if you can.
schreiberm @
gmail.com

Door Prize of a Cold

2006-07-31T23:17:00.000-06:00

So lately things have been tiring to say the least. Our whole family got sick with some summer cold except for Lily. We've been plugging away at life even with the colds and when we have time we rest a bit to try to get healthy.

To be honest, I'm not used to having so many people in our family sick! That is a rare occurrence around here. I think other than the chemo side-effects, nobody had a cold for about 10 months after Abby was diagnosed. I bet we've only had a couple colds all last winter too. Anyway, I guess this is normal, it just doesn't feel like it. I was a bit discouraged that the first time we took Abby out with out a mask she got this cold and then gave it to all of us. I know we should probably still have her wear a mask when she's around a bunch of kids but sometimes I just want her to feel like a normal little kid at a birthday party. It's kind of hard to eat cake with a mask on too!

So, I guess she got the normal experience... party, cake, snotty kids, lots of fun, and a little door prize of a cold for the way home. Who knows, maybe she got it the day before at the store, or just from one of our friends that she visited.... oh well she should be over it soon.

Next Monday the 7th will be her next pulse of chemo, I don't think she gets a spinal tap this time but I can't remember for sure. If she does get one it will be the last one for at least a couple months. I think she will do a lot better with out the taps every month. That seems to knock her on her back pretty quickly.

Well, there's the update. see ya.

The count down in my mind.

2006-07-19T13:34:00.000-06:00

So it starts, the count down in my mind.

It's always been there, ever since we started this journey but now I can start to see the light at the end of the tunnel.

I'm planning my curriculum for school right now, well I'm suppose to be, and as I've been looking over the calendar my eye keeps getting caught by the word February. I don't know if I can really explain it but as my eyes hit that spot on the calendar a million images flood through my head. Images of Abby in the Hospital... all of those images. Images of her bald head and puffy face, and the images of how Anna has changed and how a new baby has joined our family. Images of friends bringing more meals than I could ever count for almost a year. And those crazy images of Abby playing in the back yard with a backpack full of methotrexate. ---As you can image it is hard to plan my curriculum with all of these non technology related images flashing through my head.--- So here I am blogging.

February, I still don't remember if it is the end of Feb. or the beginning but that doesn't really matter. What matters is she will be done! And with that date in sight, the count down begins. Last night as I was picking up my sleeping daughter to take to the bathroom and give her 6MP I realized that she is a lot heavier that when I started doing this. Her hair is in full bloom and we actually had to give it a little trim just last week. Ahh the change. She'll be 5 here before we are done... 5! Crazy. Wasn't she just 2.5 yesterday? Crazy.

So, T - 7 months... what will we do with ourselves?! Well, I guess if I don't get my planning done then I'll be doing that when she is done... so, on that note, back to planning!

Amazing...

2006-07-14T17:02:00.000-06:00

Amazing...
Originally uploaded by fireater.

Doesn't this picture just say it all?

Yup Abby just got done with her steroid and chemo pulse and once again could eat a whole box of donut, maybe even a bakers dozen, by herself. The hunger effect is starting to wear-off now but lately it hasn't completely worn off until a couple days before we start it all over again!

Anyway, just a short post to show you that picture... but while I'm on the amazing point... you all are amazing and we appreciate all of your support, prayers and comments! So many amazing things! Maybe another post on that soon.

Low Key?

2006-07-02T07:42:00.000-06:00

Low Key?
Originally uploaded by fireater.

I don't blog much anymore because things are pretty low key. I guess that is a good thing. The funny part of that is that "low key" for me is probably a bit different than it is for other families. I guess I just don't know what is blog worthy anymore. I'll just write it all down anyway and you can all tell me it is good info or not.

See, Abby starts her monthly pulse tomorrow, Monday, again. This time will include the steroids for a week, the spinal tap with Methotrexate, and a shot of Vincristine. Abby hasn't been feeling very well with her tummy so this one might be a bit more difficult than normal. She just threw up this morning and is now resting in bed. Maybe we will have to put her back on the Zantac again.

Abby still has her rash on her face and sometimes it looks pretty good while other times it looks like teenage acne. We took her to our family doctor, the doctor that diagnosed her, and he said the rash is actually all over her body and only getting red on her face. When it gets really red it might be a secondary infection of the rash and we could get some stuff for that if it persists. We'll just have to talk to Dr. Smith again about it. It is probably from one of the chemo drugs so there really is nothing that we can do about it. We can't very well take her off of her chemo for a rash huh!?

Both Tiffany and I are just chronically tired. Usually it is not a problem but when Abby starts getting up often during the night, like last night, and Lily is up a lot to eat then it can get pretty rough.

See what else, oh, we took a trip to Idaho to visit the family... 3 kids + 1 Van + large quantities of coffee + stops for gas = a 12 hour drive (13 if you miss the turn off near Salt Lake... not that that would ever happen). Anyway, it was a good trip and girls had a blast.

So that is about it for now. We have some friends coming in on Monday, and my folks + my grandma in on Thursday and then I leave for 4 days on Sunday... like I said, pretty low key. :)

Living with a Celebrity

2006-06-11T14:41:00.000-06:00

Well Abby's cute face is in the paper again from our involvement with relay for life.

Click here or go to:
http://coloradoan.com/apps/pbcs.dll/article?AID=/20060611/NEWS01/606110328&SearchID=73247352768480

The Luminaria ceremony was very nice again, emotional but nice. I do want to say "thank you" to everyone who bought a Luminaria! Abby had a whole 40 feet of bags with her name on them! Thank you for honoring her that way and especially thank you for your support of the American Cancer Society by buying one of these.

Well, I'm pretty worn out still so I'll write more about the experiance later.

See ya.

Mark

Celebrity Daughter

2006-06-07T19:50:00.000-06:00

Celebrity Daughter
Originally uploaded by fireater.

Quiet. Not something that I'm used to lately. With 3 little girls now these moments are few and far between, unless I want to get up super early.

Abby is back on chemo again this week and to be honest I'm not looking forward to it. You would think by this point I would be fine with these weeks, and usually I am, but for some reason this week is different. Maybe it is all the attention that Abby has been getting lately. The picture and article in the paper, the Team in Training weekend stuff and the upcoming Relay for Life event this weekend. Now don't get me wrong, it all been great stuff but it has also unpacked a lot of things that I think I had forgot about.

I got to speak this weekend, with Abby of course, at the Team in Training event. In the email they asked if I'd get up and say a few things about how the Leukemia and Lymphoma Society had helped up out and I said sure. I imagined that it would be a big long table with a handful of runners there and I would just stand up at the table with Abby and say something. Instead it was a big conference room with a stage and podium that I got to speak from... That's ok, I'm flexible. Abby and I went up there and she leaned into the mic and said, "I'm Abby and I have Leukemia." Just encase some of them didn't know. I guess I just wasn't ready for how those words would bring back so many emotions. To say it myself is one thing, but to hear it from the lips of my daughter is a whole different thing... a very uncomfortable sentence really.

And though the reason that we were there was hard it really was a great weekend for our family and Abby. The girls got gifts, we were put up in a very nice hotel room with a great view, the pasta dinner event was fun and Abby loved talking to all the runners. She was especially great at handing out candy and pretzels to the runners at mile 25! Tiffany got to get up early with Lily and got to get a Starbuck's in the lobby (yes they had one in the lobby of the hotel!) and just reflect on life in the quiet of the morning.

So, even though it brought back some memories and emotions that I would rather not ponder on, it also brought joy and hope to a lot of the people that were involved with last weeks event. I'm sure her little speech and chubby-cheeked smile will do the same for the people this weekend at Relay for Life... how can anyone not smile back at that little face!

Off we go into the decadron week, pray that it will be a good one.

Cancer Kid with a Cause

2006-06-02T21:04:00.000-06:00

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..

2006-05-30T13:56:00.000-06:00

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...

2006-05-16T16:37:00.000-06:00

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

2006-05-12T14:00:00.000-06:00

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!

2006-05-10T18:14:00.000-06:00

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

2006-04-17T23:44:00.000-06:00

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

2006-04-15T08:41:00.000-06:00

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

2006-04-11T12:27:00.000-06:00

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!

2006-04-01T18:23:00.000-07:00

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

2006-03-28T06:09:00.000-07:00

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

2006-03-20T21:29:00.000-07:00

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

2006-03-15T09:19:00.000-07:00

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.

2006-03-07T06:10:00.000-07:00

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

2006-02-20T10:53:00.000-07:00

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

2006-02-09T07:45:00.000-07:00

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

2006-02-07T20:57:00.000-07:00

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

2006-02-01T22:15:00.000-07:00

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.

2006-01-31T06:30:00.000-07:00

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

2006-01-29T08:24:00.000-07:00

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?

2006-01-22T13:44:00.000-07:00

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

2006-01-15T13:10:00.000-07:00

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

2006-01-10T11:26:00.000-07:00

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"

2006-01-08T07:45:00.000-07:00

"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!

2006-01-03T15:03:00.000-07:00

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...

2005-12-29T21:03:00.000-07:00

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!