Sunday, December 30, 2007

Diagnosis Anniversary #3


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!!!

Saturday, December 22, 2007

Tis the Season to Post


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!

Sunday, November 18, 2007

Thankful

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.

Monday, October 29, 2007

Disney Detox


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

Thursday, October 25, 2007

Wish Trip: Give Kids the World


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!

Thursday, October 18, 2007

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

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.

Saturday, August 11, 2007

Blogging? What's that?


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.

Thursday, July 05, 2007

Happy 4th!

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

Sunday, June 24, 2007

Summer Fun

 

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.
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Monday, June 11, 2007

Abby goes pony-back riding


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!

Sunday, May 20, 2007

Pictures of the trip

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.

Wednesday, May 09, 2007

We made it to Disneyland



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.

Saturday, May 05, 2007

At the beach.



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.

Saturday, April 28, 2007

Appt. and Steroids...

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!!!!

Friday, April 20, 2007

Officially Done!


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!

Wednesday, April 18, 2007

The Last Pills

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.

Tuesday, April 10, 2007

In the Middle

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.

Tuesday, April 03, 2007

The last of the Grumpy pills

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.

Friday, March 30, 2007

Rewishing


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.
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Monday, March 26, 2007

Phobic

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.

Saturday, March 24, 2007

The Wish Lady

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.

Sunday, March 18, 2007

Psuedo Spring

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.

Wednesday, March 14, 2007

Back on Chemo

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!

Sunday, March 11, 2007

Abby's Home

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.

Friday, March 09, 2007

One More Night

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

Thursday, March 08, 2007

The Uncomfortable Bed

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.

Tuesday, March 06, 2007

Spent.

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.

Saturday, March 03, 2007

Overnight in the Hospital

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!

Wednesday, February 28, 2007

Sinus Surgery Thurs

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.

Tuesday, February 27, 2007

A Full Week

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!

Sunday, February 25, 2007

Fair to Good

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.

Friday, February 23, 2007

Just pray for Abby's health

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. :)

Wednesday, February 21, 2007

Abby's new meds

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!


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Tuesday, February 13, 2007

ER Sunday

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

Sunday, February 11, 2007

RSV?

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!

Friday, February 09, 2007

Upper GI

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.

Saturday, February 03, 2007

Biopsy results

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.

Tuesday, January 30, 2007

AWOL Appendix


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.

Saturday, January 27, 2007

Tuesday Chemoscopy

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.

Thursday, January 25, 2007

GI doc Friday

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!

Saturday, January 20, 2007

Still getting better

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!

Sunday, January 07, 2007

My Family is Different...

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.