Sunday, December 31, 2006

Ringin' in the new year

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

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!!

Thursday, December 28, 2006

Chemo before the storm

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!

Friday, December 22, 2006

We'll be Home for Christmas

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.

Monday, December 18, 2006

Still sick

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.

Wednesday, December 06, 2006

Chemo and the Christmas Angel

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.

Sunday, November 26, 2006

Everybody's sick... but Abby

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!

Tuesday, November 14, 2006

Contemplative

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.

Thursday, November 09, 2006

Sinus news

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.

Sunday, October 29, 2006

Hope

 

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 :). Posted by Picasa

Thursday, October 26, 2006

Navy Academy

 
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. Posted by Picasa

Saturday, October 14, 2006

Bedside Blog

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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.

Tuesday, October 10, 2006

Ahh the fall

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.

Monday, October 02, 2006

light the night

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

Sunday, September 24, 2006

New End Date :(

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!

Monday, September 18, 2006

I like the Night



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

Sunday, September 10, 2006

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Only 6 treatments to go.

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!

Tuesday, August 29, 2006

Abby is pretty good

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.

Saturday, August 19, 2006

IgG Therapy


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.


Saturday, August 12, 2006

Finishing up this round...

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

Monday, July 31, 2006

Door Prize of a Cold

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.

Wednesday, July 19, 2006

The count down in my mind.

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!

Friday, July 14, 2006

Amazing...


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.

Sunday, July 02, 2006

Low Key?


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. :)

Sunday, June 11, 2006

Living with a Celebrity

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

Wednesday, June 07, 2006

Celebrity Daughter


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.

Friday, June 02, 2006

Cancer Kid with a Cause


Cancer Kid with a Cause
Photo by V. Richard Haro,
of the Fort Collins Coloradoan
To buy the image from them click
here
With a look like that I'd say her percentage of a full life long cure just went up!

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

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

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

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

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

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

Thanks everyone for checking in!

Tuesday, May 30, 2006

Time to Blog..


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



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



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



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



Well that's all for now!

Tuesday, May 16, 2006

Vincristine from a Flower...

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

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

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

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

Buh bye!! Posted by Picasa

Friday, May 12, 2006

Pictures of a Lily




Hey all,

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

I hope you enjoy them all!

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

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

Wednesday, May 10, 2006

Abby has a new little sister!

Hey all,

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

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

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

2 hours later, Lily was born.

Have a great day, off to take more pictures!

Monday, April 17, 2006

Ohhh the Big blog blood drive


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

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

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

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

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

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

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

Saturday, April 15, 2006

A Good Wed, Thurs & A Good Friday

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.

Tuesday, April 11, 2006

Yet another Spinal Tap Tuesday

Hello all!

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

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

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

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

Saturday, April 01, 2006

Counts are coming up!

Hey all,

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

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

Tuesday, March 28, 2006

38.... Just 38

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

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

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

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

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

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

Monday, March 20, 2006

neutropenic is not the best

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

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

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

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

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

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

Wednesday, March 15, 2006

Abby's doing really good

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

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

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

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

Tuesday, March 07, 2006

Spinal Tap Tuesday again.

Hey all,

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

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

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

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

Pray that she does well.

Monday, February 20, 2006

Things are going pretty good

Hey all,

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

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

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

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

Thursday, February 09, 2006

Thankful for so much

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

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

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

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

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

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

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

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

Tuesday, February 07, 2006

Endoscopy went well


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

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

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

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


Wednesday, February 01, 2006

Cat Scan... & 3 other appointments

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.

Tuesday, January 31, 2006

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

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

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

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

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

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

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

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

Sunday, January 29, 2006

More on Abby

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

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

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

Sunday, January 22, 2006

When will it stop?


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

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

I'm going to go nap.

Pray that Tiffany and I don't get it.

Sunday, January 15, 2006

This one's been rough

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

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

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

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

Pressing on...

The Schriebers

Tuesday, January 10, 2006

Spinal Tap Tuesday

Hey all,

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

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

Sunday, January 08, 2006

"not feeling good"

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

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

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

Tuesday, January 03, 2006

Man, what a year!

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

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