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

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.

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.

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!

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.

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!

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.

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. :)

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!


.

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

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!

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.

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.

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.

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.

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!

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!

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.

Two words... Pink Eye

Enough said.

Ringin' in the new year

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

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

Perspective.

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

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

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

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

Happy New Year!

Give us this day our daily meds

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

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

Anna:
Benadryl (why not?)
Robitussin

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

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

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

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


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

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

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

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

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

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

Chemo before the storm

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

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

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

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

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

We'll be Home for Christmas

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

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

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

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

Still sick

Hey all,

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

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

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

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

Chemo and the Christmas Angel

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

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

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

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

Everybody's sick... but Abby

Hey all.

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

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

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

Contemplative

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

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

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

Later all.

Sinus news

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

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

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

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

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

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

That's it for now.

Hope

 

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

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

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

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

Navy Academy

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

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

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

Bedside Blog

  

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

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

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

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

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

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

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

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

Ahh the fall

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

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

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

light the night

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

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

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

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

Till later

New End Date :(

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

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

That's why my heart sank.

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

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

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

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

I like the Night

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

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

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

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

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

Good night

 

Only 6 treatments to go.

Hey all,

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

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

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

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

Abby is pretty good

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

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

Thanks for your thoughts and prayers.

IgG Therapy

Abby is still sick.

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

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

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

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

---

Finishing up this round...

Hey all

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

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

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

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

Till my next entry... bye!

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

Door Prize of a Cold

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

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

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

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

Well, there's the update. see ya.

The count down in my mind.

So it starts, the count down in my mind.

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

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

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

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

Amazing...

Amazing...
Originally uploaded by fireater.

Doesn't this picture just say it all?



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

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

Low Key?

Low Key?
Originally uploaded by fireater.

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



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

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

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

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

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

Living with a Celebrity

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

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

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

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

See ya.

Mark