Abby's still doing great

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

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

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

Till next time I post.

The Dad

I really need to keep this up better!

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

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

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

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

So, here's the much over due update:

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

Till we post again...

Abby's Daddy

Port will be out on Friday!

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

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

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

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

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

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

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

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

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

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

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

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

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

The dad.

Abby's doing alright

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

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

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

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

Diagnosis Anniversary #3

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

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

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

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

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

Tis the Season to Post

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

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

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

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

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

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

Thankful

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

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

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

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

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

And I'll leave it at that.

Disney Detox

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

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

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

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

Well I'll get those pics out here sometime!

Out

Wish Trip: Give Kids the World

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

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

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

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

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

Buh Bye!

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

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

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

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

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

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

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

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

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

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

Blogging? What's that?

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

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

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

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

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

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

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

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

Happy 4th!

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

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

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

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

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

Mark

Summer Fun

 

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

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

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

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

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

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

Abby goes pony-back riding

Hey all,

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

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

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

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

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

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

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

Pictures of the trip

Hey all.

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

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

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

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

See ya all.

We made it to Disneyland

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

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

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

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

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

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

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

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

Friday more of the same and some fireworks.

Saturday we leave after lunch.

Off to rest up for the big days ahead.

At the beach.

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

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

Pretty funny stuff. And so much more to come!


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

Off to indulge in the incredible sunset! bye now.

Appt. and Steroids...

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

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

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

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

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

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

Officially Done!

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

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

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

The Last Pills

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

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

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

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

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

In the Middle

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

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

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

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

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

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

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

Off to dream of the days to come.

The last of the Grumpy pills

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

21 days of the grumpy pill during Consolidation.

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

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

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

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

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

Rewishing

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

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

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

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

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

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

Phobic

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

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

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

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

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

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

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

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

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

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

The Wish Lady

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

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

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

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

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

Psuedo Spring

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

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

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

Back on Chemo

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

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

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

Abby's Home

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

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

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

That's it for now.

One More Night

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