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.

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