Can't believe shes doing it again

I really don't want to post right now.  I'm sad and mad but mostly sad.  I can't believe we are doing this again.  I can't believe she is doing this again.  Almost 8 years after we took everything out and said goodbye we say hello and put it all back in.  I don't want to have to watch my little girl suffer again but that's the only option we have right now.

Overall Abby is doing ok.  She's sore and nauseous and it's only going to get worse on those fronts. We went over the treatment roadmap last night with the doctors.  She handed us sheet after sheet of chemo drugs printed out with names and side effects listed for each.  She told us what the 1st block (cycle) of treatment would be for this month and it's pretty intense.  She is on a relapse protocol that has had good results in the past.  It has some new chemo drugs in it and a lot of the old ones that we know about all to well. The goal is to get her into remission by the end of this cycle, test, and then we can decide where to go from there.

The reality of how much we may be at the hospital, and how sick Abby might be, hit me like a truck last night.  It's a hard place to be.  I so long for a nicer set of drugs that can cure these cancers but we don't have those yet.  Chemo feels a lot like using leeches, or maybe a gun, to get rid of an infection on your leg.  It's a really hard thing as a dad to stand by and let someone "heal" your daughter in this way.  I guess this is why people tore their clothes so much in the old testament writings.

So, I'm overwhelmed, Abby is sad, we are all tired.  We will all hit the wall at some point.  And, at that moment we have a choice, either get bitter and mad or rest in our faith in God's plan for our lives. Fortunately and unfortunately, we don't have the choice to insulate ourselves from the harder realities of this world any longer.

To live means you also die.  To really smile you must also cry.  Pray that we will all rest in a peace that is not our own.

Thanks.

Update: port in, tap done, sleeping

Just a quick update. Abby is all done. Port went in well, spinal tap and chemo, went well. She's sleeping now.  That will be good for her as she hasn't had much sleep in the last couple days. 

Bedside Posting

I remember this life.  You can't sleep so you start to think.  And thinking turns into the need to write and so you start to type.  They you figure that you shouldn't keep these thoughts to yourself so... you post.  It's kind of being in a coffee shop. Nice windows, free coffee, comfy chairs that turn into beds, clean sterile floors, lots of fun bells ringing.  Well, I guess the coffee and chairs are the same.  I wonder if they would let spruce it up a bit more.  Maybe let me bring a laser cutter in here? -I could cut our a really cool room sign for everyone!

Anyway, Abby is finally asleep.  It has been a rough re-entry.  I think she just has so many fears that get brought up from her past experiences, fears that she doesn't even know are in there.  Today her main emotion was fear and anxiety over what will be the next painful procedure.  Jet lag doesn't help either.  I'm wide awake at 10pm and I don't have an IV in me.  They moved her IV yesterday and put it in her other arm but still she says it hurts.  Her back was also sore but that seems better now with tylenol.  Basically she has been in some sort of pain for the last 5 or 6 weeks since her legs first started being bruised and swollen.  Chronic pain just wears you down, I hope she can get some sort of relief soon.

They did the bone marrow test today and got the preliminary results in a format that they can read, in English this time too, which also helps with the readability.  Acute Lymphoblastic Leukemia (ALL).  We will know what type it is tomorrow but the Japanese tests already showed that it was pre-b, the same type she had last time.  She will also go into surgery for 2 procedures: a spinal tap + chemo, and she will also get her med-o-port which allows them to access her veins without having to give her an IV.

It's weird to be here again, last time I wrote about her first treatment I was wrought with fear but this time I'm not.  I just want her to get going so that she will start to understand that fear has no power over her.  My prayer is, that her fears of the unknown will be replaced by a kind of peace that can't be taken away by these new circumstances in her life.

Have a good night, or day... depending where you happen to be in the world.

Waiting...

Abby is checked in at Children's Hospital.  They haven't done much yet because the Japanese test results are a bit hard to read so we are going to repeat them tomorrow.  Also in the mix is the fact that her blood counts are pretty good right now and they didn't see any blast cells in the blood today.  So before we move full steam ahead with treatment, we are going to pause and make sure we are heading in the right direction.  Several doctors have stopped by and taken a look at the bruising and Mark's well documented pictures from the beginning until now.  Way to go Mark and the school nurses!  Abby is doing well. With two new owls to keep her company and shrimp for lunch what else could a girl want? The first of the bone marrow test results will come tomorrow afternoon.  The rest we will have to wait a bit longer for, Tuesday night or Wednesday morning.  Thanks for the prayers and love sent our way, we are feeling it all and appreciate it more than we can say!  We will keep you all posted.

Abby Has Relapsed

This week, we pulled the eject lever, and rapidly came back to Colorado to start treatment for Abby's Leukemia.

Below are some excerpts of emails that I've sent this week to my friends and family from both sides of the globe.  We leave in 30 minutes to the Children's Hospital in Denver and we will once again have a better view of what this journey will look like soon.

From Wednesday night after diagnosis to some great guys in my life:
******
"Well, it looks like this will be our 2nd time that we get to walk down the road of Leukemia treatment.  But right now I'm in Japan so I need your wisdom and I have about 2 days before I need to make preparations.

Basically, our big fear came true today, when I took her downtown to St. Luke's (the International Hospital).  They did another blood test that I requested and detected blast cells (they shouldn't be in your blood stream though).  So to get the definitive answer, they asked to get a bone marrow sample.  They got the sample and 90% of her marrow is blast cells (that means she has Leukemia again).  They will know the specific type of Leukemia tomorrow. "

****

And to our Colorado Friends once we had made the decision to fly home for a bit:

******

Colorado friends,

I had lots of catchy subject lines for this email.  Like, "Dusting Off the Old Abby Update Page"  or "What are the Odds?"  But, in the end I decided not to even do an executive summary and just put the news right in the subject line.

Yes, Abby was just diagnosed again with Leukemia.  

8 years off treatment she has relapsed.  This is very very rare, kids don't normally relapse like this... but when has our family ever been normal.  I will find out what type of Leukemia it is in a couple of hours when the results come back. So yes, we are dusting off the old "Abby Update" blog from 8 years ago and I'll be recording some new entries. Or maybe I'll do a Facebook page but those are kind of the least of my concerns right now because I'm still in Japan.  I definitely didn't see this coming.

So here is the nitty gritty.  We are coming home for a bit. Abby is doing remarkably well.  We caught this really early.  She still has an ok immunity and we are praying for that to hold up for another week or 2.  She has a bit of time before she has to get on treatment, probably a week.  We've talked to a lot of people and prayed a bunch and both the people here in Japan and our doctors in Colorado agree that we should get treated in the USA, especially for the first month.  So, we will be flying back to Colorado with 10 suitcases this weekend or early next week. 

I'll post info on Facebook as I know and send out links to other ways you can keep in the loop in the future soon.

On to the heart stuff.  This is hard.  It's going to be a bumpy road again and we are all ready pretty worn out from all of this transitions that we have just gone through.  I am optimistic that Abby will be cured again.  And I also know what the treatment will look like.  It will be long and tiring, there will be days again when I don't think I can do another day.  And then I will do that day, and the next and the next.  This time Abby is a teenager, she will also face this struggle much like Tiffany and I will.  It will leave some marks on her, some more battle scars, some more physical scars too but we all need to continue to remember that our life is not our own and that we are not in control.  That illusion of control has once again been stripped away for the Schreibers and I'm going to trust that we will experience God's freedom in new ways as we all walk this out together.

~The Schreibers

*****

More info will be posted here soon.  From Tokyo to Colorado, we love you all!

Dusting Off the Old Abby Update- Makes it real

Writing helps me think and process.  While we were in the Japanese hospital, St. Luke's in Tokyo, I wrote this while waiting to get the bone marrow procedure and test.

November 12th-

Well, I guess we'll have done this twice now.  Wow.

When you walk into a room with 4 doctors that is never good. That's what I just did.  There are some things that transcend the language barrier huh?!  Lots of doctors in a room after a longer-than-normal wait time is one of those things.

I will remember this day for the rest of my life, just like the time that Dr. Samuelson told me the first time that Abby had Cancer.  I remember that vividly too.  I'll remember this in the same way.  I will remember walking out to the little garden area, calling Tiffany and telling her that, “we need to talk.”  But this time it is in Japan, on my Japanese phone, I took a crowded rush hour train here not a car.  How will we do this cancer thing here?  Oh, how your life can change with 1 train ride. Yet, at least this time I know the potential road ahead.  Blood cell counts are abnormal, but you shouldn’t have 12.5 % Blast cells in your blood, you should have 0.  12.5- I will now have another number burned into my brain.  Last time it was 70,000 total white count, this time it’s 12.5.  -oh how numbers can have such significance.

But 50%.  It could just be a scare.  I used to have the mug that said, “reaching for 50%”, I wish I had that now.  It would be good to carry around. 

That's all I got to write that day.  The rest is a blur.  Leukemia in Japan.  The taxi ride home was worth the full cost.  We sat in the quiet and I thought about how my life was once again going to change.  I don't know what Abby thought about she is often pretty quiet.  She is a strong kiddo but I don't want her to have to be so strong

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.