Back from the Hospital

Just a quick note to let you all know that Abby was discharged yesterday about 4pm and is doing good at home.

She is on Vancomyacin and is still very hungry but all in all she is doing fine. Her face is getting very puffy again from the steroid drugs but we are done with those on Tuesday!!! Yippee!!

I'll write more as I have time.

One of the 70%...

So Abby is now one of the 70% that gets admitted to the hospital during DI. Tiffany just took her down today after they did a blood culture when Abby was down for her chemo yesterday. They have Abby on antibiotics again and from what I've heard they are checking to see if this is the same bacteria infection that she has had before. If so then they may have to do surgery to remove her Broviac line encase it is laying dormant in the line.

So, that's all I have right now. I'll try to post as I have time and access to the Internet. Please be praying for her infection to clear up and for her not to have to get her line removed.

Thanks!

Ravenously Hungry

I'm still in California for the TEAM conferance with the Youth Leadership Institute at APU but I wanted to give a little update as to how things are going on the Abby front.

Abby is still relatively healthy, grumpy and hungry but healthy. Actually VERY hungry in the last 2 days. The request for food has grown and now is even at night. Being a very independent little 3 year old, Abby decided to solve her own problem of hunger the other night. Late into the night and early in the morning she was found roaming around the kitchen and helping her self to different food items in the pantry. Since that wasn't exactly what we wanted to be the norm in our house and since it was an exhausting hight Tiffany decided to put up the baby gate last night and provide snacks in a basket for Abby to eat through the night.... That worked to a point, but the basket still had to be refilled a couple times during the night with snacks.

Now, Abby is a good little girl that has been to taught to share as any child would be at her age. And she is getting pretty good at it too. For instance, last night Abby decided to share her snacks with Anna. Makes sense you know, sharing is a good thing. So..... Tiffany and Vicky found Anna in the crib this morning with various snacks strewn about. Popcorn, rice crispies, and chocolate cookies were probably a lovely breakfast for Anna but probably also a pain to clean up out of her crib.

So, be praying for energy for my wife and mother-in-law while I'm gone. Pray that Abby won't eat us into the poor house, and that she continues to to well with the chemo effects.

Abby's 3rd chemo week is coming up on Tuesday and for the next couple weeks she will be, as our doctor says, "in the danger zone" for this phase. The point when 60-70% if kids are admitted to the hospital. Please be praying that she will be one of the 30-40% that does not have to go in.

Thank you once again for all of your comments, prayers and encouragement!

Noodles... Lots of noodles

Noodles... Lots of noodles
Originally uploaded by fireater.

Well, yes here appetite is back! For a brief glimpse into our life, I give you the breakfast menu.

7:30am Milk
7:45am Request for "Real Pancakes".... "with syrup"
8:05am Pancakes served... with syrup and butter
8:10am Bananas ordered and served
8:15am More bananas... "in the peel please" (at least she still is polite in her demands:))
8:20am Done with pancakes, asks for noodles... Penne pasta to be specific.
8:22am Finished convincing her that Spaghetti Noodles were already cooked and would be better.
8:25am-8:35ish Abby eats 3 bowls of spaghetti "with sauce... without tomatoes please"

At this point I ran and errand but when I returned at around 9am, I found her seated at the table again eating....

9am.... Ice cream, Haagen-dazs of course! Mummmmmm. Breakfast of champions really!

I've been out since then but I'm sure she's found some more stuff to eat. That is actually a good thing really, she needs to gain some weight. She's been about 28-30 lbs since she was diagnosed and we don't want her to lose any more during this phase if possible, so on I'll go being a short order cook and letting my child have her 9am ice cream rendezvous....

The only problem that I see is that I end up eating everything that she "orders" and then doesn't want... Man this is going to be worse than the "Freshman 15" for me! I guess I just have to start throwing food away... so hard for me to do... Oh well better than buying all new clothes. :)

Out for now.

I just like this poem

I THE BRIGHT FIELD

R.S. Thomas


I have seen the sun break through
to illuminate a small field
for a while, and gone my way
and forgotten it. But that was the pearl of great price, the one field that had the treasure in it. I realize now
that I must give all that I have
to possess it. Life is not hurrying
on to a receding future, nor hankering after
an imagined past. It is the turning aside like Moses to the miracle
of the lit bush, to a brightness
that seemed as transitory as your youth
once, but is the eternity that awaits you.


I found this poem today while I was reading some blogs. I really like it. I like that it give such a good image of living in the present. I like that it reminds of our heritage, of God's promises to our forefathers, and to us.

I so often hurry on to get through things, to the future... The future must be better right? If I'm not longing for the future, then I'm just as often "hanker after an imagined past." Oh how we twist the facts in our minds of the future and the past always thinking the grass is greener somewhere else. That God was so much bigger in our lives then or will be bigger in our lives in the future... But what about now? What burning bushes are just outside of our view if we would stand still enough to look around and find them?

So yes life is still demanding with my moody little girl, often so much that we barely get to sit down... exhausting. I live my days lately longing for the future and the past... anything but the present. Nap time, bedtime, morning coffee... these are music to my ears. But almost a week into, I find again that these times do not satisfy. The coffee doesn't quench my thirst, the afternoon nap does not fill me up, the "I'm so exhausted from the day so lets watch Seinfeld reruns" don't rejuvenate me as in the moment I think they will.

You know what does? .... Sitting in the hammock rocking my little girl, drying her tears, and comforting her. Redirecting her little misguided request for 3 different types of cheese laden pasta within 3 minutes with love and a solid boundary that I really do know what's best for her. Praying in the midst of chaos for God not to rescue me from my circumstances but to comfort me and rock me through them; to give me boundaries in love that really help me to know that He knows best for me. Just talking to friends, looking them in the eye, and with that contact knowing that my family is loved. And in the same way, turning to look past my often misguided focus, to see the burning bushes in my life; realizing that I am on holy ground, right now, in the present, and that more than anyone else, God is drenching our family in love.... If I would only look over to see it more.

The grumpy pill

The grumpy pill
Originally uploaded by fireater.

There is a point in every bloggers life when they have to figure out how much to share in this open journal of sorts. That is probably one of the main reasons why I haven't posted since DI started, I just don't really know what to share. Do I share that every morning and night now as I grind up this little pill and cover it with chocolate syrup to disguise it's taste that I feel like I'm poisoning my daughter. Do I share the angst and frustration that really just comes from a deep sadness of having to watch my little girl go from her playful little self to a grumpy, tired, whiney little girl who just wants to zone in front of the TV and how it happened virtually overnight? Do I share the resurfacing fears of losing my daughter not to the cancer but to the side-effects of these drugs that are suppose to help her? Aren't meds. suppose to make you feel better?

So I do know what to share really, it's just I don't know how to share it. I think what's up above is a pretty good start. I know that I need to share these thoughts and these feelings with you all because you all are part of this journey too. God created us for community, to share in the tough times and the fun times. I hope you feel closer to my family and Abby by now and that you really will know what is truly going on when you read a post here. I know that we are not alone in this and I thank you for all of your prayer, support, encouragement, and comments. Keep the comments coming please, it's nice to hear from you all.

So as you can see Abby is doing ok. She went from her smiley chipper self to a grumpy, crying shell of herself over night. When we awoke on Wednesday morning we had a different little girl living with us. I don't know if you can really relate but Tiffany says that it seems like Abby's having a 10-fold killer PMS type week. Just out of control and inconsolable one hour and then seemingly happy and ready to go swing in the back yard the next minute. Couple that with the fact that she had a spinal tap on Tuesday and another chemo drug that makes people very nauseous for days, and one more that makes Abby very constipated, oh ya, and the Decadron that makes them hungry with mood swings and yes... what we have here is a very tired, grumpy, crying one minute/smiling the next, hungry, nauseous, sore, dizzy little girl who doesn't understand why she feels like this and the only comfort that she seems to be able to find is by smelling her blanket and sucking on her fingers.... constantly. On that note, pray that she doesn't get raw sores on her fingers, her middle 2, because she has them in her mouth when ever she is awake lately.

She also saying that she thinks that she needs to go to the Hospital a lot lately since she doesn't feel good. Breaks my heart really. We actually did go down to the hospital yesterday, she was excited for a minute until I put the Emla cream on her things. This is a numbing cream, topical, that they have you put on before they do spinal taps or shots, yesterday was the 2 shot day (see the roadmap for PEG, day 4). I put it on right as we where about to pull out of the driveway and she did NOT want that on... She is pretty smart now and can see the signs of what is going to come when we put Emla on. She cried for about a half an hour... all I could do is tell her that it would help and keep driving. She did ok with the shots but must have been pretty sore on the way home because she just sat there and looked out the window, didn't want to play or talk, she didn't even want to get a new toy from CHOA (they give the kids a toy especially when they get a painful procedure).



Well, the girls are up now so off I go... I've got to go crush up that nasty little pill, drowned it in syrup and give it to my little girl for another day of fun. :)

Getting on the "Road" of DI

Getting on the "Road" of DI
Originally uploaded by fireater.

Merging with traffic on a freeway always has been a hard thing for me to do. You're driving nice and slow, enjoying the scenery and all, and then you hit the on ramp. You hit the gas and faster and faster you go, accelerating towards a mass of fast moving cars at this crazy angle of attack, hopefully finding a spot at the end to fit your car into amongst them.

That's kind of how I feel to day. I'd rather take a country drive, a country drive on Sunday even to really slow things down .in a tractor. But nay, on to Denver we go, roadmap in hand, off to start DI.

So, yes the roadmap that you see in the image above is not your typical roadmap, but for us it is becoming more typical. Every phase of this treatment has its own "roadmap" to help us know what's coming up. This roadmap is a complete protocol of what Abby will be getting, and when, for all of the Delayed Intensification time frame, 59 days in all. As you can see from the top all patients must qualify for this phase with a certain ANC (immunity) count of 750 and a certain level of platelets. Yesterday Abby finally qualified since her ANC was 1600 but last week she was only at 200, that's why she couldn't start.

Well we've got to get going. down to Denver to get all of day 1's Meds. I can feel the car accelerating already:-).

Abby's Broviac all Patched up

Abby's Broviac all Patched up
Originally uploaded by fireater.

Just a quick note to tell you that Abby's Broviac is all fixed up. It did take 5 hours to find the right size tube patch kit and then they had to splint it to keep it straight... get this using Starbucks stir sticks that a nurse had. Wow, Starbucks is everywhere huh!... Anyway, we are off to take a little drive in the mountians now that we've removed Abby's splint:). It will be fun to get out!



Bieeeeee

Abby's going to have a little "Bro"

Abby's going to have a little "Bro"
Originally uploaded by fireater.

Ya really... Wait, you didn't all think I was talking about a little bro?! No a little, or should I say little-er "Bro"... A Broviac. Now that I got you heart racing with the title of this blog I'll let you in on what's going on. (I've wanted to post that title for such a long time! hehe.)

Anyway, Tiffany is down in Denver at the ER with Abby because she cut her Broviac, her in-line catheter with a pair of scissors. Yup, we just couldn't stand being away I guess, waiting for that extra week you know. I think Tiffany just wanted to go down there subconsciously or something.

So, basically, Tiffany was cutting the tape off Abby's little bro...viac and got distracted by Anna and Abby and whoops... cut the tube. Just barely caught the side of it, but it was enough to let blood out and other bad stuff in so, down to Denver she went. The doctor who put it in will repair it pretty soon, probably getting started by now. I think to fix it they just will shorten it past the cut and then put a new end cap on and hopefully that is it. Hopefully it isn't too short since Abby has to have it in for the next 2 months. That is what they would like to do at least, keep it in until DI is over but if she gets another blood infection they will have to take it out and then Abby will have to get needle sticks for all of her chemo appointments. So, pray that she doesn't get any blood infections and that the shorting of this Broviac Catheter is no big deal.

I'll give you all more news if there is any... hopefully nothing news worthy.

Didn't pass for DI

Didn't pass for DI
Originally uploaded by fireater.

So we thought Abby's immunity counts were good, her ANC, but we thought wrong. We even had multiple get togethers with lots of kids and our "side dish and sanitizer" party thinking that she would be above 1000 or so at least.... Nope..... 200 today. That's Neutropenic, fever alert status and all... Who would have thought so. Oh well.



So, she needed to be at 500 ANC today to start the next phase, Delayed Intensification, DI... We figured she'd pass with flying colors... but nope, 200... crazy. So, we wait a week, or maybe just till Friday, we'll have to talk a bit more with them.



One one side of the coin, I really just want to get going on this phase so that we can be done sooner, and so that I don't have to go through all the potential scenarios in my head any more... Basically tired of the waiting game. But on the other hand, we get our spunky little girl, motor mouth and all, for another whole week. And we don't have to share her with the side-effects of the chemo drugs for another week!



So, probably a really good thing in a way. She won't be finishing up until September at this rate but hey, who am I to say that this isn't the best thing for her? I guess I'll just have to try to enjoy it and not be anxious about what is to come...



Carpe Diem!

Still chemo free

Still chemo free
Originally uploaded by fireater.

Hey all,

I made a quick webpage of the Relay for Life event for everyone to check out. That last picture, though I love it, makes me cry quite often when I see it. I mean there's no escaping it, she is a cancer patient/survivor with a medal, a shirt and all that goes with it... just hits home I guess. BTW, if anyone wants one of these pictures just let me know and I'll post them on snapfish as well.

She is still doing great in this window of rest that she has. She's running, "hoping on Pop" with reckless abandonment (I thought I was in the WWF last night as she through herself from the bed in a cannon ball style plunge onto my stomach! :)), and in all she is have a great time with lots of energy. That is fun to see. If you look at the pictures above you notice that she is in a giant box of Styrofoam, thanks Kimberly! She loves the box as much as the present, She played in this box for seriously about an hour and a half! Giggling the whole time!

Please be praying for Delayed intensifications... 5 days till it starts, and is going to be rough. This fact was brought back to the forefront of my mind as I was talking to Nikki, a leukemia patient at Relay for Life (black hair in the picture above) and she was telling me about her treatment, how most of her joints died during one of the chemo rounds and how she has had to have a couple joint replacements from donors, just like you would get for any other organ transplant. Also how her body couldn't metabolize 6-MP and other crazy stuff. Just makes me very alert to the fact that the coming road may be more difficult than it has been. It also makes me extremely thankful for how great Abby is doing... so, please ramp up the praying and thoughts for Abby.


Oh yes, more to come...

Relay fun

Relay fun
Originally uploaded by fireater.

Well, the Relay for Life event was awesome to say the least! Abby just loved it and wanted to go back, and back, and back... so we did.

We ended up going around 5:30pm on Friday night and staying until about 9:30pm. During that time Abby did her survivor lap with all the people who had or have had cancer. She walked the whole 1/4 mile and only said she was tired at the very end. Abby was interviewed by the radio station that was there after her lap and she did really good with her high pitched little voice. Around 7pm they had dinner for the survivors, it was spaghetti and I once again, Abby ate a ton of it! That was a big deal too because she hadn't been eating for the last 2 days and I was starting to get a little concerned.

We ended up meeting a ton of people a the event and Abby had this weird connection to the other cancer patients/survivors. She would just walk up to almost anyone in a purple shirt and give them a hug or talk to them. The coordinator of the Fort Collins event Dianne got Abby a little bear, a necklace that lights up, and fell in love with Abby. Dianne walked a lap around the track carrying Abby the whole way! We also ran into a girl who is done with Leukemia treatment, Nikki, that we had first met at Dr. Smith's office in Denver. We talked a lot and I got to meet a bunch of team members that she was on a team with, team Drahota, a construction company team. Abby loved all of these people too and loved playing this little game that they had made to get people to help donate money to the American Cancer Society involving spinning a wheel and then winning a seed packet. If you got 3 of the same seed packets you also won a prize. Abby didn't quite understand the concept and would just go over to the wheel, spin it, and then go get a seed packet... by the end of my talk with Nikki, Abby had a pile of seed packets as tall as her!... Ok, you got me, not 3 feet high from the ground... she was piling them on a chair, but still they were as tall as her when pile up on the chair, and it sounds better when you say a seed pile as tall has her! Anyway...

We finally went home after they lit the luminaries, Abby had 2 in honor of her, Abby lit her own with all of our new friends watching and helping her break the glow sticks. Pretty crazy to see all of those lit up bags all around the 1/4 mile track, all spaced apart by no more than a foot. Some bags in memory, some bags in honor, and some as a sign of hope.

We signed up with team Drahota to walk a lap since they were short 1 person, she had lost the fight to cancer 2 weeks ago. We took her place from the 5am-6am lap and clocked 1.75 miles with Abby in the stroller all wrapped up in a big blanket. That was the bubble blowing lap and we had a great time! They do different things like lap poker, and bubbles through out the night to help the time go by. I took Abby for a long drive to help her sleep until breakfast and then she came back... again, and ate about 6 pancakes! Man that girl can eat!

Well, that was a night all right, a fun filled emotional, and hopeful night. Filled with meeting new friends, connecting with people on a way deeper than usual level and giving and receiving a lot of love. Pretty weird to see someone in a purple shirt, strike up a conversation, hear their story and relate to them in a way that others can't. They know the pain, the angst, the good and the bad days of treatment. They know of hope and they really know how to suck the marrow out of every day. Want to have a good party?... go hang out with cancer survivors and their friends for a night and you'll get to see who knows how to live life in a real, deep, and fun way!



Next year... we'll do a team... who's with me!?

Relay for Life

Relay for Life
Originally uploaded by fireater.

Since Abby has been doing so good lately, we decided to brave the crowds and participate in the Fort Collins Relay for Life. This event is set up by the American Cancer Society and they have local events set up all over.

Abby has been invited walk the "survivor lap", basically anyone who has had or is currently being treated for cancer. After the opening ceremonies they have kids skits and other activities while the teams walk on the track, they walk till 12pm the next day in relay style! Yikes! At 9pm they light the Luminaries, each candle bag has a name of a person that fought cancer, in memory or honor of them. I think it will be a powerful experience to say the least.

If anyone wants to come and cheer Abby on in the opening lap or stay for the candle lightings we'll be there from 6pm-9pm on Friday night, June 10th.



Relay for Life

Fort Collins High School Track

June 10th 6pm- June 11th 12pm



So as you can see, every thing is going good, Abby is enjoying this restful phase and so are we! More to come later.

My normal little girl

My normal little girl
Originally uploaded by fireater.

Well the last of the High Dose Methotrexate, HDM, infusions are done and it went really well. No major side effects this time. The normal chemo brain fog for 24 hours but no fuzzy bunnies or visions of Trogdor the burninator or anything like that... and yes, that is a very good thing indeed.



Since she's been so relatively normal, we've been really pushing the boundaries and venturing out of our little germ-free world. Yesterday we went to JAX, an outdoor store here in town, to buy her a butterfly net. The store was incredibly crowded and she was touching every single net and other toy in the kids section but I wasn't too worried. That was really nice not to be worried so much.



Abby's been running more, playing better, and talking constantly in her little mouse pitched sing songy voice... I'll have to find a way to put a clip of it on the web for you all to hear, pretty cute. It's great to see her like this again and at the same time it is a bitter sweet feeling since she is on the eve of DI. We really are enjoying this phase since Abby is so much more like herself, but at the same time we don't want it to end. I find myself thinking back to that first month and all that it entailed. Grumpy Abby demanding food and then not wanting to eat it, then trying to eat it and crying. And then 5 minutes later she eating 4 adult sized portions of pasta. Little Abby's cheeks getting all puffy and hair falling out every time you run your fingers through it. The fact that she couldn't walk and would just shuffle around on her knees. But most of the time she just sat on the couch, that tiny little girl of mine, looking so small in her little semi permanent place at end of the couch. Ya, I don't miss those days.



To be honest visions of those days are still just below the surface a lot of the time. I don't think that I can express to you how much I don't want to go back to those bleak days. Yes, you got me, this strong man is a bit scared. Scared of what is to come in the next round. I'll have a little education day about the next round soon so that you can be scared with me... no, don't be scared, I'll try not to be either. I really do have a lot of hope that it will be different than last time. We know a bit more of what it will be like and that is a good thing. We have a bigger place with a yard and it is the summer, how can anything be too bad in the summer!? We have a small cache of bunny mac and cheese, so we should be set.



I'll try to scan in the "road map" for DI soon so you all can be on track with us.

No hallucinations yet!

Just a quick shout out to let you know that Abby is doing pretty good with
this HDM infusion. She was only up twice last night and is only a little
spacey today.

Abby's favorite nurse at CHOA, Joanne, gave her a smaller, more concentrated
Methotrexate bag yesterday and it was much easier for her to carry around!
Ya! We finally go this down on the last time! We also had the forethought
to ask for the two 1800ml bags of fluids to be split up into smaller bags!
We're getting smart huh!? From this afternoon on, she will only have to
carry around some small 500ml bags of fluid till Friday morning.

We also found out that Abby will not have to start DI until June 21st! So,
if everything goes right with this infusion, we won't have to go down to
Denver again for 3 whole weeks! Whooopeeee! :-) Keep praying for DI, we're
all gonna need it!

Breakfast before Round 4

Hey all~

Above is the picture of Abby and some of the Team N' Training participants and the mentor Tyler. We all went to breakfast on Sunday morning after their run and it was a lot of fun! These folks have been training since the beginning of March or longer for some marathons and other races. They also have been raising money for the Leukemia and Lymphoma Society as part of the race. This is a great program and Abby was an Honoree for this last race training schedule. It has been great to get to know some of the participants and if you are reading this post as a participant. Good Luck and Good Job! Thanks for all that you have done to help families like mine that have been affected by blood cancers.

Hopefully next time that Abby is an Honoree she will be able to come to more events and such since she will be in maintenance. but she's not there yet,just a few more months. 1 more High Dose Methotrexate(HDM) (tomorrow) and then on to Delayed Intensification! Yikes!

So, looks like we will start the HDM tomorrow and then a week of rest and then.. DI. Yes we are a bit nervous about it all but also very hopeful and glad that it landed in the summer when my schedule is much more flexible. I'll try to scan in the "road map" for the next treatment, DI, soon, I think it will help you all to see what goes on and what days you can all be praying for Abby's health and side-effects.

Well, that's all. Thanks again TNT participants, Mentors, and Coaches!

Restful?!?

So. ya. that's me.

Abby's doing good though, actually a little hyper sometimes, and a little
grumpy still at times. She hasn't been sleeping very well, like last night
she was up about every hour. She still has her low-grade fever, bouncing
around between 99 and 100. She is off the Vanco now and on an antibiotic
that we only have to give her once a day so that is much nicer. The limp is
mostly gone, and we think the new fever is probably from a cold, Anna has a
cold too.

Other than that, we start the last Methotrexate infusion on Tuesday thru
Friday. And then on to DI! Yikes, Please start praying for that one, early
June- mid August. 21 days of steroid drug therapy, weekly doses of
Doxorubicin, more Vincristine, PEG shots, Arac, 6-MP, Cytabarbatine, spinal
taps with Methotrexate. And a few more that I can't remember.. So, please
pray, 60%-70% of kids get admitted during this DI phase, pray that she is in
the other 30-40% that gets to stay home. Pray that the side-effects are
minimal to none, and that she maintains her health the in the best possible
way.

Thanks!

Abby's still truckin'

Just a quick note to say, "It's HOT in Colorado!" Yes, just 2 weeks ago it was snowing and yes it is suppose to be spring here but once again leave it to Colorado to be different... The last 2 days it has been in the low to mid 90's... So... we broke out the pool! Abby loved it, she also loved not having to be attached to the IV fluids bag anymore too.

Quick update: Abby is on Vancomyacin, the strong antibiotic for her blood infection. She still is limping a bit so we'll have to get that checked next week. She is also on a medicine to help negate the neurological affects of High Dose Methotrexate (HDM). She only has one more HDM to go, a week from Tuesday. She what else... Eye Doctor appointment on Monday, and a CBC at CHOA. Other than that I think we are just going to catch up on our sleep, as much as the administration of Vancomyacin allows for, every 8 hours and a 2 hour infusion rate.

Abby's back to herself again mostly, and all the dwarfs have gone away for now, thanks for your prayers and comments. We love you all!

Did I say that this was going to be easy?

I seem to remember saying that these High Dose Methotrexate infusions weren't really that bad... I take that back. This one's been pretty rough.

Abby's gone from sleepy to dopey and is now in the grumpy stage... I'm just plain sleepy. Let me explain.

Tuesday the Methotrexate infusion started in Denver, routine as always, good spinal tap, easy infusion and then back home. But from that night till now it's been anything but routine. Here's the general schedule of recent events:

Tuesday (sleepy)
12pm --- Methotrexate infusion, they start to put it all in and hook her up to the 2-liter bag for the next 24 hours.
3pm --- Home
6pm --- Methotrexate starts to be released by her system (i.e. Peeing)
8pm --- More Methotrexate coming out
10pm -- Metho out
12pm Metho out

Wednesday (Dopey)
2am yup... still coming
4am... I can't remember but I think I took her anyway
5:30am "where's this all come from?!"
9-10am.. Hallucinations of me outside her window and other funny visions
11am-Going back down to Denver
12pm-- Shivers/shakes at CHOA
4:30 leaves Choa
6pm, 8pm,10pm,12am.... "how big is your bladder girl?"

Thursday (Grumpy)
6am... Leucovorin rescue drug given... and yes... more pee:)
8am.. she doesn't feel good, heel pain, limps when walking.
10am.. 100 degree fever... going back down to Denver
12:30pm.. Blood infection found (must be a big one, usually they don't find a positive culture for several hours)
2pm.. Back on Vancomyacin (the only antibiotic left that can kill all bacterial infections)
3pm----> ? Who knows, They are still in Denver.

So as you can see, anything but normal. Currently the hallucinations are gone, the heel pain is still there but it may just have been a splinter or maybe the Vincristine shot from Tuesday, sometimes causes leg pain. She'll be on Vanco until they can run some more tests on the infection and see what else it will respond to. Once they find what it will respond to then they will switch her over to that one. The Broviac is most likely the source of the infections and since she has had three, they may take it out. Hopefully she can make it through the summer with this one in, through Delayed Intensification, DI. If she can make it through DI then they will take it out then and she will only have to get stuck with needles once a month or so, or we could have them put an under the skin line in, called a medo-port, we'll see.

So that's the update. Time to go get Anna, maybe I can't take a nap too. :)

This is Abby during the High Dose Methotrexate

Yep, that's her. Well, without the beard, less hair, no hat, smaller nose
and no cartoon styled cloths. or shoes. but the expression is the same..
Well mostly the same. Anyway, Abby is doing OK. Carrying around 2 liters
of fluids with you can't be fun nor getting yet another spinal tap I would
imagine. Yet even with all of that, she is still remarkably chipper.

It is fast approaching 10pm and I probably should have gone to bed awhile
ago seeing that it may be a long night of used Methotrexate fluid depositing
for the ole Abby, but then again I did have a triple shot of coffee at 3pm
so why should I complain. well actually if you must know, I didn't even have
that triple shot this afternoon. It sounded awfully good but I didn't have
the energy to go get one. Those Denver days tend to wipe you out. I wonder
if people that live in Denver are always wiped out? Hmmm.

Anyway, the spinal tap when well, only a little "owe" and then it was all
done. They always comment about how well she does with these taps compared
to other kids. I'm glad that she is so cooperative for them and me. They
don't even give her Vers-ed anymore because it was making her incredibly
weepy and not real fun to be around when it started to wear off. So the
only thing she gets is a topical pain killer and a little Fentanyl that
wears off pretty quickly after the tap. The infusion was fine, pretty
routine if it can be called so.

Her ANC is down to 650 but Dr. Smith wasn't too concerned. He was wearing a
Sponge Bob Square Pants tie. should I be concerned? :-) No, he even said
that Abby could come to Frontier's Graduation if we wanted, (Frontier
Academy is the High School I work at for those of you that don't know) so if
she is feeling up to it then I think we just may!

Well, since I didn't have that coffee I'm going to go to bed. I probably be
woken up in the next hour and then every couple after that but that's par
for the course. Part of me just wants to pull an all nighter and blog all
night long. But you wouldn't want to read that long of a post so off to bed
I go!

I'll probably look more like my little dwarf friend by the morning than Abby
will : )