Saturday morning 6AM

So I wanted to post and let you all know how I am doing, it's been awhile since I've been on here. I am way excited about our house, we were sharing how quickly we found it and did all the paperwork, loan stuff, etc. with everyone at closing yesterday and they were amazed it all went so quickly and so smoothly. Thanks God. I feel a weight has been lifted off of my shoulders in being given this house. I have so loved living at UV, and I was crying as I walked through our apartment last night after the girls were asleep and Mark was at Home Depot with Brian buying 20 something gallons of paint. We brought Anna home here, we moved in when Abby was only 8 months old. It has been a loving and fun community and we will miss it dearly. But, onto new adventures. I try to stay focused not on circumstances but on truth, God's truth. His faithfulness, His goodness, His power, His love... all are over circumstances. Things can be going totally crappy and God is still God and in control. But I gotta tell you, I am SOOOOO excited to have a bigger place, a yard, a garden, a swing set, color on the walls.... so nice.

I would like to give you all some info on how Abby is doing, I know many of you like specifics to pray for. She is doing so well. She is a bit more tired than two weeks ago, now that chemo has resumed. Her legs are weakening but so far she can still walk, climb and run for the most part. She is waking up during her nap and some at night and just crying. She seems uncomfortable but not enough to wake her up, she seems in a dream state so maybe she is having bad dreams. Some older kids that can talk about their side effects have said they have weird dreams on chemo. Her eye is still improving, the doctor will look at it this Tuesday in Denver. The hemorrage has gone down a good deal, making it easier for her eye to see and not have to work so hard and therefore turn inward. We still patch her good eye for 1-2 hours a day and that helps and she actually loves it. She is pirate Abby, thanks to my dad who came to visit with a full eye patch, pirate hat combo and she totally loves the eye-dea -tee hee. She will continue the weekly chemo in Denver which is primarily the vincrystine in her IV and a shot of PEG in her leg once. We give her 6MP in a pill form at night and AraC in her IV 8 days out of the 3 weeks. I have to be honest, the AraC is the hardest. I will share my experience last night in hopes it will help you get a clearer picture of what to pray for.

Mark was at Home Depot and he usually gives it to her (it's the one he accidentally squirted on himself) but tonight it was me. It is DNA altering, and a known cancer-causer. It is responsible for possible cancers she might get later in life amoung other side effects. It makes her sick, although this round we haven't seen any nausea (yeah!) and the anti-nausea med we give her an hour before is great. But pushing it into her IV is an emotionally wrenching experience. I sat there for about 5 minutes praying and talking myself into doing it. I know God is in control, I know he loves her and has a plan for her life that is good and not only that, but the best for Abby- even if it involves dieing or surviving but having side-effect related issues. But for a mom it is still very unsettling. So in a new attempt to not bottle or stuff my feelings I cried out to God and asked for help. Just because I know he loves her and is in control doesn't mean I have to put on a smile and accept it without question or being real with how I feel. I told him I didn't like it, that pushing some toxic chemical into her little body sucked. I want tea parties and trips to the zoo, not this. I learned something in that moment. I was real with God and he responded with so much love and peace, even though I was still upset at the reality of the whole thing. I saw how hard things can heal us-like chemo and my own struggles through this. I saw that I need to let go of her life, to try to control it our do anything to protect her body is impossible. That brought a sense of relief and a weight lifted in my heart along with a great sense of loss and helplessness. I can love and comfort but I can't do anything physical to heal or protect my little girl. That brought tears to my eyes but also a peace that she is in the hands of her creator, her heavenly father. Do I really believe that he is enough for her? That he really does love her more than I do? That his agenda for saving the world isn't at odds with his good plan for her life but that the two are the same? Do I really believe that I can come to him, greiving and in pain and that he will have something to say in this? I was listening to the NPR interview with John Piper after the tsunami hit Sumatra and he kept saying that God works all together for good for those who love him- actually God said it first right? The big question was, did God send the Tsunami or just allow it, knowing he would fix what he could after. God's sovereignty has to be grabbed ahold of on the other end of things like this. We can't remove God's power even though there is mystery in why he causes these things to happen. We can't say he is powerless or that he just half-heartedly allowed this tragedy in our family. He saw that it would be good in the end, and in the middle too, and so whether he caused it or just let sin do it's thing in this broken world, I don't know. But the deal is, He isn't into sparing us from pain but bringing us to him. So my realization in all this is that regardless of how things turn out or how difficult they are in the middle, the goodness of God in tragedy is that he offers us WHO HE IS to fully enjoy NOW in this pain, and that is enough, more than enough. If I can wrap my mind and heart around this I know ther will be profound growth in who I am in God and in my intimacy with him. A ong I heard that stired my heart and maybe will yours as well:

I've heard questions without answers
I've know sorrow
I have known pain
But there's one thing that I cling to
You are faithful
Jesus, you are true

When hope is lost
I'll call you Savior
When pain surrounds
I'll call you Healer
When silence falls
You'll be the song within my heart

I'm alone out of my sorrow
Thru the darkest night of my soul
You surround me and sustain me
My defender forever more

I will praise you
I will praise you
When the tears fall
Still I will sing to You
I will praise you
Jesus praise you
Through the suffering
still I will sing to you
Always sing to you
Jesus sing for you

When the laughter fails to comfort
When my heart aches, Lord are you there?
When confusion is all around me
And the darkness is my closest friend

I will praise you
Jesus praise you

Little bald heads

Here I am again sitting at the CHOA office surrounded by little bald heads. I feel like I've been gone for the last 3 weeks, lost in the numbness of life, trying not to have to feel. But here we sit on the eve of another part of the phase with no guarantees as to how it will pan out; feeling not so ready to plunge head-long into our out-of-our-control life again.

When you walk into the CHOA (Childhood Hematology and Oncology Associates) Clinic you are greeted by the normal doctor waiting room paraphernalia, toy area, Nemo style fish tank, and the like, as well as some very kind office managers. But really, before you can let yourself believe that you are just at your regular doctors for a checkup, the sore-throat or vaccination kind, the reality of where you are hits you. All around the walls are black and white pictures, large portraits actually, of little bald kids, some have wisps of hair or little tuffs; those hairs that just wouldn't let go and are justifiably being left on the heads as a badge of honor. Others are just clean headed, not a hair on the horizon. The other thing that strikes you and brings you back to reality is the cute little hat tree next to the door, filled with hats free for the taking. If you had somehow missed being brought back to reality of visiting a cancer clinic by the end of the appointment the double door closet filled with toys, hand-made quilts and more hats made for cancer kiddos would probably snap you out of it.

Tiffany was reading a little board book last night to Abby called "What is faith" a simplistic book that talks about trust, patience, believing the best about things, all very simple elements of faith. On one page is this picture of a little girl loading up all of her toys in a box to give away to other kids that would need them more, a very kind act indeed. The sentence read, "Sometimes faith is giving all you have to someone else... because you know God will give you everything you need." I've read it many times, as has Tiffany, but this time we also noticed the label on the box... "Toys for Children's Hospital". Tiffany said out loud, "You know, that's us." Just reading our child a book, and bam, oh ya she has cancer.

I've felt pretty good lately, at least I had thought so but the combination of a lot of things in life and especially having to mark down all the medicines on the calendar for the next month has kept me from squelching my feelings any longer. I'm not despairing or anything, I just still catching up with the reality of life and honestly, as crazy as it sounds, the reality of it all still often sneaks up on me.

But all in all, the last 3 weeks have been really, really smooth in comparison to what they could have been like. No rushing down to the hospital, only 1 to 2 trips to Denver for a couple weeks and last week we didn't even have to go to Denver, we only had to make the 5 minute trip to Poudre Valley Hospital here in Fort Collins to get blood drawn. What a great time! I really loved it. No meds, no major concerns, her eye is almost back to normal, everything is going great... And now we start again. Honestly, I just don't really want to start, I want her to be done, I don't want to lose my little girl back to the fantasy feeling world of chemo drug side-effects. The one effect that we are still not looking forward to is the full lose of her hair. She's been pretty unaffected in that realm up until this last round and we think that this one will probably take the rest of it. Tiffany combs out a fair amount each day but Abby has such a thick head of hair that it just isn't that noticeable yet. I guess we'll see. I'll get used to it though, probably like her cute little bald head. Maybe I'll have to get my camera out at the end of this phase and take a nice black and white portrait of my little bald-headed daughter. I'm sure she'll look more beautiful than all the pictures in lobby of CHOA combined!

I'll post a shot of her when it all goes away.

Till later...

Feeling like Hermits.

So, Abby's still doing good, actually really good. We have had to postpone the start of the second part of this phase of treatment again because her blood counts still weren't up high enough of Thursday. On Sunday we will get her blood run again and hopefully she will qualify to start, her ANC has to be around 750 currently it is only 500, good just not good enough.

Lately we really have been feeling like hermits though. A big part of it is that we can't take Abby out in public when her ANC is below 500 (neutropinic). For the first 6 months that is just how it is going to be though her counts will be low, then bounce back then the chemo will take them down again. After the first 6 months though it should be better since they try to keep her counts between 750 and 1000 ANC. I'm looking forward to those years of the treatment just so we can interact with people.

That's what we miss the most, adult interaction with friends. I mean don't get me wrong, I like cutting paper into tiny pieces and putting stickers on construction paper and even on occasion cutting the stickers into little pieces, all great fun but a little monotonous sometimes. Maybe a house will help with that because we will be able to have people over and actually have a place for their kids to sleep other than the bathroom and out bedroom. But really, we just miss people and I think the reality of 2 months of living with out the adult friend interaction in our lives has finally started to wear on us. Maybe also it is the fact that the last two weeks have been relatively easy, no meds, just a couple trips to Denver, and lots of mellow nights at home.

So anyway, things really are going good, I think we just desire true community but we just don't really know how to do it either. So if you know how or have ideas on how to help us stay connected during these immuno-compromised months post a comment, give us a call, email, write us a letter, or just stop by... or all of the above; we'd love to just say "hi" and enjoy some conversation.

I'll post soon as to when Abby is going to go down again to CHOA for her all day chemo session, probably Monday if her counts are good.

Love you all!

To low to start

Well, Abby went in to get blood run yesterday and it turns out that she is still too low to start this next part of the consolidation phase. Her ANC (immunity) is only 350 and it needs to get to 750 before we can start. She get blood drawn again on Thursday and if the results are good, we'll take her down for the all day chemo on Friday, if not then we'll wait till next week and she how her counts are.

Other than that things are still good. It is kind of nice to have another week of no meds. The only thing we have to watch for is the fever thing with her low counts.

Just a quick check in, hope all is well with you!

2 months down, 28 to go

Well, on Tuesday, we will start 2nd course of this Consolidation treatment with an all day chemo at the clinic, and then back to the Ara-C and Methotrexate at home. The last couple weeks have been really good, I almost said blissful but it wasn't quite that great but still good. Other than Abby's counts being dramatically low for a week or so, and a couple low fevers there hasn't been much drama... and that is a great thing! So lets catch up now.

Abby has been still having weekly appointments at the clinic, CHOA, and for 2 weeks has been resting from the Ara-C and Methotrexate to let her counts come back up. For these last 2 weeks she has been on weekly spinal taps still with methotrexate administered in the spinal fluid and on Vincristine once a week too.

She also had another eye appointment and the doctor said things are looking good. She could definately see better and the doctor estimated another 2-3 weeks until the blood hemorage is fully dissolved back into the body. Patching her eye has been fine, she likes to be a pirate. Robin joined Vicky here this weekend and brought his own pirate outfit complete with eye patch and cap that he found at pirates.com I believe. Abby got a kick out of having her "Pappa" dressed as a pirate!

See, what else... Tiffany and I got to go to Boulder for an overnight while Tiffany's parents watched the girls. We had a great time! It was really nice to get away for a night and we even talked a bit about things other than Abby or Anna. I also sprained my ankle today, so I'm not much help to my family but I think I'll be healed up good enough by the end of the week.

We are closing on our new place on the 18th, we took Abby and Anna over there for the inspection and they loved it! Especially the back yard, finally a place for them to run around! For the next couple days Abby kept asking to go back over to our new house, even after I explained to her numerous times that it wasn't our house yet. She's a hoot.

I think that's it for now. We'll get a blood test tomorrow to see if her counts are high enough to start back up with chemo on Tuesday. We'll let you know!

Buh Bye

Everything feels almost normal

I haven't posted for awhile because to be honest, everthing seems amost normal. If you were to come over and watch Abby and Anna play, you would probably only notice a few things but wouldn't really guess that she has cancer. Ya, her hair is starting to fall out but she has so much of it that it isn't really that noticable yet. And yes, her walk is a bit straight legged and her eye a bit off but if you didn't know any better you'd just think she had some minor problems. As for medications, we haven't had to give her more than one this weekend which has made bedtime much more enjoyable. Her mood has been great and she has had a great time playing outside lately. The only thing that has been a real issue has been her tummy and even that seems pretty low key to me. But she does still have Leukemia and it still is a long road ahead but man am I glad for a bit of a reprive!

It is a bit weird to be in this spot where she seems so normal yet I know that there is still more to come. I don't really know how to explain it, maybe it's just the fact that she seems so normal and then somthing quickly and harshly reminds you that it isn't the way that it used to be. Like church for example, we went as a family this weekend, the first time since the whole thing was uncorked. It seemed normal enough, get the kids dressed, put them in the van and go to church... but from there it changes a bit. Now we add in: put the mask on Abby, sit away from potentially sick people, keep Abby and Anna with us instead of in the germ infected nursery, worry when people cough around us, etc. Now don't get me wrong, we had a good time and worship was great. The parts of the sermon I caught were good too. But we did end up leaving early because taking care of our girls during the message proved to be a bit focus and time consuming than we had thought it would.

So, we are very thankful that Abby is doing so good and we have had a great time with her, we are just trying to figure out what we can do together as a family during these intial 6 months when things are a bit more trying.

One thing that will be nice in the near future will be moving into our new house! Yup, we close on the 18th of March and then will move in the following weekend, the 26th. During the week of the 18th we are planning on working on the house, paint and such. Also, it give us a bunch of flexibility so if Abby is sick that week we hopefully won't feel rushed to move out.

If you want to help move us, paint or fix up some minor things shoot me an email and I'll either fill you in or forward it on to Brian and Cindy Siebert, I think they are going to coordinate it all for us. Is that ok Brian? :)

The Sacrifice that is Worth Taking!

Hi to all of our family's friends, prayer-partners/warriors, and family members in Abby's journey! This is "ole Rob" filling you in on the journey from a California perspective. As you can see it with your own eyes...my sacrifice is something that God blesses! My darling wife is hanging with the Colorado clan and having tons of time with Abby. This pic was taken last month when days were filled with much more tension, uncertainty, pain and chaos. We felt the presence of God in that part of the journey in ways that we cannot even begin to express. Now, we are on the other side of one of the mountains Abby is scaling...she's a "rapid responder"...she's in "remission"...all that is awesome news! There are even times when my "way too young to be called a Nana" Vicky and Abby are reporting much giggling, jumping and fun being had in these moments. Even so, just as you can scale one huge mountain in your life and feel accomplished for doing so, there are always more to climb. We are not void of a poliferation of peaks to ascend. It is the same with Abby...a few peaks have been climbed...there have been victories...but more is ahead! As Abby's grand-father (still something extremely difficult to fully admit since I'm such a young pup!), I still call each of you to prayer. There isn't a moment where we are not coming to the throne of healing and grace and seeking God's mercy! So, thank you for the sacrifice of your time, energy, gifts, love, and prayer. Believe me, it is a sacrifice worth taking! It is a sacrifice that is a "sweet aroma to the Lord". Our trust in God is filling these strenuous moments with gifts of hope beyond measure!

I'm running out of good titles... another appt.

Abby and Anna

Just got home from rescueing Anna from a potentially germ infested house of our freind who was watching her while Abby was at the clinic. Seems like Anna is a germ magnent! She could stay inside our super clean house, in isolation from all sick kids and the like and it seems like the first time that we go out or she plays with another kid... boom!... She gets sick. I guess we'll see this time.

I left early from work after getting a call from Tiffany who had just got a call from our freind who was watching Anna telling her that her little boy was throwing up. I sure hope Anna doesn't get it because it seems like when one person gets a stomach bug the whole family gets it and boy I really don't want to have to watch Abby get anything else if we can avoid it. But it happens and if it does no big deal, we'll deal with it. Abby's counts are up so at least we wouldn't have to take her down to the hospital.

On that note, Abby is doing good still. She's still a bit cross-eyed but that's ok, I can deal with my cute cross-eyed little cancer patient until it clears up in a month or two. Until then we still need to patch it for a couple hours a day but she does fine with it so far. I'm going to get her the pirate get up and we can pretend that we are on a ship sailing the 7 seas! ARRRR ye scurvey Dawg!!! I just really wanted an excuse to type that:)

As for her appointment today, it sounds like things went well. Abby's a bit tired and when she is like that she can change into a very, well lets say "spirited" little girl... ok so she get a bit, no not a bit... really nuts sometimes and out of control, screaming and all. Not a fun experience but it has happen both yesterday and today, hopefully whatever is waking her up at night will stop waking her up and she can get some good sleep. Better yet, since her counts are up, ANC =900 today, we can give her Ibuprofen to take the aches and pains that she may be having away! Yippee! Pray that that will help, her cute smile can only go so far, you know?

She also got her PEG shots, (one in each thigh) her Vincristine (the one that gives her the aches and pains and muscle weakness too), and she had a lumbar puncture (spinal tap with chemo). So lots today in the office but at least she is off the Ara-C and 6-MP (oral med) for a week... that will be nice.

That's my quick or not so quick update. buh byeeee

Living in a Dream

Tiffany and I both feel like we are living in a dream. Part of it comes from the whole surreal feeling of having a kid with cancer, part of it the new life style that we live in and a big part is the realization that we really have no control in this life. Just different to get used to ya know? We start to get used to it a little bit and then something else pops up, like Abby's eye problem or thoughts about potential side effects of the chemo drugs like infertility for her and once again, back into this surreal dream state.

"Take my life" from the passion CD just came on as I write this, the chorus goes "Here am I all of me, Take my life it's all for thee." That's what I feel like has happened in all of this. I feel like I didn't really have much to give before this and if that is the case I really don't have much right now. Actually though, I have a lot more now because I'm not trying to control everything.

Another aspect of this dream state that we are in just came in to play as we are in the process of putting an offer on a house. Ya crazy I know, but what isn't really crazy about my life right now... so why not buy a house. No really, we weren't planning on this at all but through some very generous gifts towards the down payment from our family we are now in a position to get something. Crazy, we're getting a house. Last week we just went to look at rentals while my folks were here because the added stress of this small apartment was getting a bit tough. If you haven't ever seen our place, it's small, a shoe box really, 11.5 feet wide and about 30 feet long. At least is it 2 floors but still, a bit small to have to live in when you can't take your immune-compromised child out to public places. So, we're moving, buying a house and now living in a dream more than ever!

The real estate agent asked us if we were excited and we had to think about it for a minute because, like I said before, this all seems so far beyond us. And yes, we are excited but it also doesn't seem real, I mean we looked at rentals last Saturday, then houses on Sunday and some more this week. And then we found one yesterday 2 days ago and away we go! So, if it all works we'll get an accepted offer on a nice 3 bedroom ranch with an unfinished basement and a nice backyard for the girls to play around in. Now we can have people come over and we'll have space for them to sit!

We'll keep you posted!

Lately we have just been tired. We get up in the morning have maybe a half an hour before Anna starts to tell the world that it is time to get up, usually around 6:30. Abby gets woken up since they are in the same room and so I either move her to our room or just let her get woken up by Anna.... Then it starts, we get them up, or I leave for work and Tiffany gets them up, and the day gets going. Meds, meals, naps, germ-a-phobic hand washing, play times and the like all day long. For awhile there, when Anna was also on meds for RSV, bedtime seem more like medtime. I'm glad she is off of those! Currently we give Abby an antinausea med at 6pm, clean her mouth, rub Nystatin in it too, then no food or milk, at 7 she gets her Ara C via her Broviac tube, (clean the access cap, 3ml saline, Ara C, 3ml saline, then 1.5 of Heprin) then the 6-MP crushed up and put in chocolate syrup, and then get her to drink lots of water with it while we read a story. Somewhere during the day we clean her Broviac site where it enters her skin so she doesn't get another staph infection. And then to bed, lately we've been putting her down in our bed with towels over our comforter and a bowl just encase the nausea matures and decides to exit via her mouth. By 8pm we usually get to sit down, contemplate the day and try to rest a bit before it all starts again tomorrow.

<>In the midst of this I did have some energy so I went running; only my second run since this whole thing started, and man was I tired. I thought I'd just do a little jog to relieve some of this pent up stress and get out in nature, so I drove to the west edge of town to run around the foothills. There are some really nice trails that roll up and down along the bottom of the hills there, a great place to jog, think and pray. I got out of the car, stretched and started up the dirt trail. It was getting late enough that the sun was starting to get low in the sky. As I got closer to the steep hill ahead the sun started to disappear behind it and I was left in the shadow. This frustrated me a bit because all the joggers that were running below on the road were still in the sun yet I was stuck in the shadow of this big hill. Their road was flatter, sunnier and probably much more enjoyable than the one that I had picked. But nonetheless, I continued on my trail.

As I continued running my normal loop I realized how poorly in shape my body was too. I was soooo tired, the trail looked way too long and I didn't think I was going to be able to even make the run back down the trail. I decided to listen to the complaints of my feet and knees and turn around. So I did, I turned around to jog back down the trail. About this point is when I got my second wind, maybe it was knowledge that I was more than half way done, or a flat part of the trail but I felt great. I thought about how tired I get at home, how tired Tiffany can be and especially Abby. As I ran, I finally got back to the sunny part of the trail and the warmth of the sun felt great.

It's been pretty easy for Tiffany and I to feel run-down lately. We also feel a bit like hermits. We don't want to be hermits but after the day we are just spent. Often, I look down off this hill that we are on and see all the people running their flat routes in the sun and just wish that was me. But it's not, and actually I think I'd rather be right where we are. I like our path, I like the rolling hills, the big rocks along the trail, all that stuff. Sometimes wish that it was sunnier and that I was in better shape for it but the more I run it the better shape I'll be in right. Really I like the run though, sometimes it’s tiring, but it also can be so beautiful, so peaceful and good.

So that's were I'll leave you.... I'm going to bed

The Eye Problem Diagnosis

So, we've been watching Abby look at us cross-eyed for a couple weeks now with no real improvement. The first appointment that we could get with the recommended eye doc wasn't until the end of Feb so we were just planning on waiting. Yesterday during the appointment with Dr. Smith he decided that we should probably get it check out and so he got us an appointment in the afternoon with the same doctor. This doctor works with Pediatric Oncology patients primarily so that was why we were waiting for him, Dr. King.

Tiffany took Abby there in the afternoon after the lumbar puncture (LP), basically a spinal tap where they inject Methotrexate to get rid of the cancer cells on the other side of the blood brain barrier. Abby did good for the procedure considering she couldn't eat that morning because of the sedation that they use for the procedure. After she came out of it she wasn't so happy though so I think they will try it with out sedation next week. Anyway, Dr. King said that she had a blood hemorrhage in her eye, probably because of the low platelet’s that she had and that it would take a few months to clear up. Basically she can't see out of her left eye when she is looking straight ahead because there is a glob of blood trapped in a fluid sack which disrupts her vision. She can see when she looks up or to the sides, just not straight ahead. Since it will take a month or two to resolve she is going to have to wear a patch on the good eye to force her to use the left one. We'll go back and see Dr. King on March 4th to see the progress.

Other than that the only other concern for Abby right now is that her hemoglobin is low and her ANC is so low that they can't read it... so, expect us to post on the blog in the near future from the hospital. We'll probably go down with her with a fever since her ANC is soooooo low. As for the hemoglobin count Abby will be getting a transfusion again on Thursday to bring it back up, right now it is on ly 8.1, pretty low.

Anyway, there's the info! Anna doing better, Abby is in a good mood mostly and other than being perpetually tired, Tiffany and I are doing great! Thanks again for all of your support!!!

Bye, bye.

Did I mention Anna has RSV?

I think I forgot to mention that Anna has a chest infection, most likely RSV. They put her on a bunch medications too, makes bed time that much more fun!:) One of the meds it Predinsone! One of our favorites, also a air way diallator, and an antibiotic.

She seems to be doing much better now we just hope Abby doesn't get it! Yikes! Oh well.

Just thought I should let you all know.

Abby's doing Great!

Just a quick post to say... Abby's doing great! The Ara C and 6-MP, the new chemo drugs, aren't making her nauseous and she is walking around a lot more this week.

I'm a bit better with giving her the Ara C in her IV tube now, but still I'd rather not. This week I spilled some on my hand and we got repremanded by the office for trying to get the air bubble out... it was a BIG bubble by the way but still... They told us to leave the bubbles!!! And also how carcinogenic that Ara C can be, alters DNA and such. My thought was, "why are we giving this carcinogenic drug to our daughter again?... to get rid of her cancer?... ironic huh? Anyway, if my hand starts to glow or grow large tumors out of my palm I'll probably give them a call. I did have to throw away my shirt that I was wearing at the time, my YLI journey shirt... I guess I'll just have to be ok letting some things go along this journey! :)

Abby helped make cookies yesterday, has been playing A LOT more and is much more content. Her eye is still a bit lazy and legs a bit stiff but otherwise she is really improving!

Well just wanted to let everyone know how things are going this sunny and bright weekend in Colorado.

The start of Consolidation

Abby has been pretty happy lately. Not just sitting on the couch. Her counts are very good, 900 ANC, good total white cell count, and every thing seems to be going good with her blood production. Since she is so good, we now get to move into the "consolidation" phase of the treatment. 2 months, 4 new chemo drugs, weekly lumbar punctures and administration of Methotrexate in her spinal fluid, and a couple anti-nausea drugs to tone down the side effects.

Tuesday was the start of this treatment and she was there with Tiffany for most of the day. They had to hydrate Abby really well and get the Ph of her urine to a certain place while they gave this one chemo drug, cyto.... something. We also started 6-MP which is an oral chemo drug that Abby is learning how to swallow. At this point she seems to think they are like a mint and therefore should be chewed up or just sucked on... not the same minty taste though I would think. Last night we ground it up and put in some chocolate syrup and that seem to work. This med she can't have with food, especially dairy or citrus because it binds with those and don't work the same.

The other drug she is on is Ara C, I don't know the long name, and it is give via her Broviac tube. We gave this to her yesterday night after giving the anti-nausea medication to her and hour prior. It is only about 3 mL but I think that was one of the harder things that I've had to do. Tiffany was reading Abby a story as I clean the tube end, added saline, then the Ara C, saline again and then heparin to keep the line from clotting. As I gave it to her, I started getting nauseous just thinking about what this drug will do to my now cheerful little daughter. I had to take a break so I went into the kitchen to throw away the now empty syringe and wash my hands. I washed them for a bit longer than usual, pondering as to what I was really trying to wash off. It's hard to give her these drugs knowing what they do, the good and the bad. Obviously if they keep her alive, or even have the chance of curing her, which they do, I will continue to give them to her, regardless of the side-effects. It's just hard.

We went upstairs as a family, put Anna down and then together Tiffany and I prayed for Abby. We even anointed her with some oil, not as a magic cure-all, I really don't know why we did, maybe just by faith, just to feel a little closer to our God, knowing that He has the power to heal her or not, and being ok with that. I really feel like we gave over our control, our desire for a full uninterrupted night sleep, and our "suppose to's" again. Not in a defeated way, but a hopeful way; a way that let us just fall in to God's arms and be ok with whatever the night would bring.

The night brought sleep, lots of it in fact. Abby cried out just once and went back to sleep before I could get upstairs to check on her. She didn't throw up either!

Ahhhhhh..... I love a good night's sleep.

All I Can Say

Well, that Dave Crowder song came on as I was standing in my living room, looking at Anna eating her peanut butter toast with Abby's fleece jesters hat on and her pjs, whiggling around in her chair like she does. I had just done the second meet at the door and switch off with Mark for the day as he now took Abby to PVH to have blood taken to see if we need to go to Denver tomorrow for chemo since her blood isn't tip top yet. I thought, ya know, I'm so glad God takes us as we are. The song says, "Lord I'm tired, so tired of working, and Lord I'm so alone. Lord the darkness is creeping in, creeping up to swallow me. I think I'll stop here and rest awhile. This is all that I can say right now, and this is all that I can give." And with God, that's enough. In fact, I'm learning that for God, that's what He most wants. Our realness, for us to just give him what's really there, even if it's not very spiritual. I'm so thankful for that. I am hanging in there. That seems to be what I say to everyone when they ask me how I'm doing. I am hanging by a thread sometimes, but God has me in His hand. Thank you all for your continued love, it is a great comfort to my hurting heart. It is great to see my little girls smile and laugh again. She is teaching me so much.

Denver, 4 out of 7 this week

So for our week "off" between induction and consolidation we went to Denver 4 out of the 7 days, the final trip was Saturday night where Abby was admitted to the hospital for a high fever. We were just about to head out to our friends house and have some hang out time, and I mean just about, when we decided to take Abby's temperature again. We had been monitoring it since she has a staph infection and Dr. Smith told us to call if it reached 102, 101 under the arm. It had been hovering around 100 for a few days but Abby was acting fine. I was getting Anna ready when Tiffany said that it read 100.8 under the arm... I told her to take it again, for sure our thermometer was wrong... sencond reading, a solid 101... add a degree for under the arm and whola! 102. Called the doc and he said I could take her to the ER or bring her down to Pres./St. Lukes. I told him that I'd be right down.

We got down there in good time and of course her fever was gone and never came back all night. Oh well, being an hour away it's not worth it to wait and see if it persists or keeps climbing. We only had to say the night and Abby was released durning the half-time show on Sunday.

Actually I was glad to go down because I've been a bit concerned about her eye. Her left eye is now drifting towards her nose and she is more often than not closing it to see better. Dr. Smith talked to some eye doctors and checked her out for anything serious at the hospital and she looks fine. He thinks it is probably just that she needs glasses. I'll be relieved when we find out for sure though because it just seems odd to me that this started to come on after a heavy duty month of chemo, low cell counts, a staph infection, and major antibiotics.... but that's just how my brain works, could be nothing.

Other than the eye thing and a yeast infection, yup we got medication for that one called in last night, Abby is in good spirits. Her blood counts are coming back up and she should be good enough to start the next phase of chemo, consolidation. That will start out with an all day appointment tommorrow at the CHOA clinic to infuse another chemo drug into her system. We'll also have an eye appointment sometime this week but otherwise it should, and I say should with a lot of hope, be a fairly mellow week, except for the antibiotic does every 8 hours. At least this antibiotic only takes 5 minutes to put in... way better than the vancomyacin which took 2 hours+.

Well, there's the update, hope all is well with you and your family too.

Christmas in Feburary?

Sitting here in our perpetually Christmas time living room not really feeling the Christmas cheer. Maybe it's the fact that I was woken up a few times last night by coughing, crying to go "potty" or just our alarm notifying us that it is time to give our leukemia daughter with the staph infection the IV antibiotics. Maybe it's the fact that it is almost Valentines Day and the only red things that we have in our house are the red mittens woven into the garland that drapes off the banister. Maybe it's the fact that Abby's legs being the size of small ladies wrists don't function the way they were meant to right now. Maybe it's that helpless pit in my stomach that seems to continually surface and sap away my strength as I watch my family walk this new life out in the same weak and stiff legged way as my daughter... every 10 joyful and perseverant steps followed by a head long face plant in the sand. Just not feeling the cheer you know?

I was watching "We Were Soldiers" the other night with a few other guys and the question came up as to who you related the most with in the movie. It being a movie about an out numbered army unit in Vietnam, I wished to related with one of the brave soldiers holding off the enemy. Or actually just any soldier, the ones that were cornered, or who went back to carry out a wounded friend. Some one in the battle, who has the option of fighting a noble but possibly deadly fight. But I didn't, I resonated with the wives, yup the wives. It may seem weird but let me tell you why. You see, these wives all had their husbands sent off to war. They had to stay at home with the kids, the bills, and the semi-constant knowledge that their husband may not come back. So they would clean, some would hang with friends, would just stare out the window, maybe longing for the days when their husband was outside playing with the kids. But I bet all of them, when they went to bed at night in an empty bed, engulfed by the silence and alone in the dark thought the same thing... What fight is he in right now? Is he going to be severely hurt? Will I lose my husband to this battle? For me though, it's not my husband, obviously... For me, it's my little girl that is fighting this fight.

Oh how I wish I could be in her place and fight this fight for her. I doubt I would do as good of a job though. After the month of treatment I would just want to be left alone and sleep, hiding from the world in bed in hopes that when I woke up it would all be gone. I would just be pissed, quite frankly, of my situation... but not her.

After a month of treatment she is as joy-filled as ever. Her smile quite often lights up the dark solemn spots in my own life. What faith of a child really. I keep thinking about what she is going to learn in this, but maybe it is what I am going to learn in this. I keep getting sad at her predicament when she isn't sad about it. I keep getting mad in ways and wondering why God allows this to happen to little 3 year old girls with so much life ahead of them... But she doesn't, she is as giggly as ever! I feeling like I should tell her that she should be a bit more depressed. Say something like, "For heavens sake Abby, you have a staph infection, you have a tube implanted in your chest so that you can get medicine (oh, that by the way is going to kill off all the good stuff in your body too), you can't walk very well any more and it may get worse before it gets better. You know you really should be mad about this! You have every right to." But does she? Do I? Do I have the right to put my warped view on this child’s life?

You know, the thing is, she doesn't know what is "suppose" to be. She probably just thinks that when you turn 3 years old, along with birthday presents comes an implant, weekly trips to the doctor, and leg weakness. For her that is all she knows. That is the faith that I want. I don't want the loss of my "how it is suppose to be" to control my life. I don't want to be like the ladies in the movie who try to busy themselves so that they can pretend that life is different than it is. I also don't want to live life starring out the window, wishing for a different day to come, for my "suppose to" to be reinstated. The reality is that Abby isn't off in a war by herself, she probably doesn't even feel like she is "fighting" anything. She's right here for us to enjoy weak-legged and all. Once again I am going to take a page from her book, actually a bunch of blank pages, pages of "I don't know what will happen and I'm fine with it being out of my control", those pages will have to replace my "suppose to be this way" pages and I pray that they will.

On that note, I think the Christmas decorations may have to come down today. We can't be stuck in the "December of Diagnosis" forever. As much as I like the lights, we're going to have to move on. I think I'll have my little girl cut out some valentines today, I think I need to learn how to redecorate from a child’s' perspective. Maybe, she can cut out a purple heart, one for her, she deserves it!

Thanks for coming along with us in our journey in this too, in the ups and downs, highs and lows, all of your comments and prayers are very special to us. Thank you.

Laughing, Playing and a Staph Infection

Well the title says it all. Tiffany just got down to Denver since the results of the blood culture showed a staph infection for Abby. 3rd time down there in 3 days, a bit tiring but we are doing good. Probably because in the last 2 days we have started to get back our little girl from the grips of Prednisone!
Last night she was just giggling, laughing at Anna and even tickeling me with her blanket. At one point Anna dumped all the toys out of a Play-Doh bucket and put it on her head. Abby just busted up laughing and so did Anna, as she played peek-a-boo with Abby. By the time that they were both laughing I was laughing too and Tiffany was starting to cry as well as I. So good to see her laugh and having fun.
Today, Tiffany went to the park with a freind and Abby played on a swing, walked a little bit, face planted in the sand a couple times too, but Tiffany helped her understand why it is hard for her to walk and the it will get better the more that she walks.

As for the infection, she will start yet another course of antibiotics, every 8 hours and we can probably do this at home through her Broviac. This infection, even though it is a staph infection is one of the easier ones to take care of. They'll put her on the big guns for now, and once the see how this type of staph response to other types of antibiotics, they may be able to put her on one that is a bit milder and only has to be administerd once a day. I hope that one works out for her sake and ours, every 8 hours is a bit hard to keep up with.

We are sooooooo glad to have our smilely child back that a life-threatening staph infection really doesn't bother us too much... I mean what part of this treatment isn't life threatening anyway really?

I'll try to post some more smiley photos here soon!

Tuesday Bone Marrow Results

Well, Tiffany is back down in Denver with Abby... she had a fever of 101 so down they went. Anna and I went to New Belguim... just to look at the building of course... I think I got the better end of the deal.

Anyway, from my breif talk with Tiffany on the phone, It looks as if Abby is in remission! That is at least on the preliminary test anyway, the better test that tells how many cancer cells there are per 1,000 or per 10,000 won't be back for a while. That test will tell us how rapid of a responder she really is, or isn't.

As for Abby's current condition, she is on the line between being admitted to the hospital and going home. Right now Dr. Smith thinks it will be ok to give her antibiotics and send her home. Her ANC counts are actually lower than they were yesterday, down to 200 or so, but they should be comming back soon based on how her bone marrow looks. So, they probably are finishing up the IV antibiotic right now, then they'll be home.

Just a quick update, but overall things are looking really good!

Day 28 and Tomorrow's Test

I took Abby to church today, she made it through the first 30 minute but then was getting a bit tired. She had to wear a mask while we were around people, since her counts are still low, and she wasn’t real excited about how it blocked her from smelling her “dee dee” (blanket) and kept her from sucking on her fingers, but it worked and it was nice to get out. One of the reasons that we braved the germ infested world of church was that Anna has a nasty cough and fever anyway, so I figured she’d probably be better off getting out of the house. Anyway, we had fun and it was good to see everyone.

Speaking of tired, I’m tired. This gig is kind of hard, good and worth it but hard. I’m both excited and anxious for tomorrow’s appointment. Excited that she doesn’t have to get chemo again till next week, excited that she will be off the moody prednisone pill for a while and excited that we may get to see more of the little girl that we remember. Doctor Smith, thinks that the leg weakness, excessive hunger, and moodiness will go away once she is off this, and with out chemo either, we may just get out daughter back… But that is also where I get anxious. Anxious about another early morning at the hospital with a hungry girl that hasn’t eaten for 16 hours, anxious about whether or not she really will get less moody when off the meds and a couple other worries. I think that I will stop worrying though, and just hope for the best.

We have really seen some improvements in the last week and on some days, other than walking, she seems pretty normal. I just have a real desire to go out and play with her again, go to the park, have her walk next to me with her whole hand wrapped around my index finger. I’d love to have her want to “hop on Pop” as she says, again when I get home from work. Those times will come, I know they will, I just miss them I guess.

Right now she is sitting next to me eating string cheese, crackers and noodles, her new favorite combo. She’s also been saying that she wants steak, something about New York, I don’t know what she means... Also, she keeps saying Cabernet… and words like ‘private reserve’… J Oh wait… maybe that’s my craving kicking in. Actually I’m glad she doesn’t want pizza all the time or something, I can get club crackers and string cheese pretty easily and it is MUCH better than trying to make bunny mac N cheese!

On another note, Abby is now signed up as an official honoree of the Leukemia and Lymphoma Society for the Team in Training race that I talked about in a previous post. I’ll try to post a link on Tuesday to a website with some photos that participants can use if they want for their support letters. And for everyone else out their that would like a photo of her smile that can light up a room for your desktop, fridge, or encase of a power outage.

We’ll probably know if she is in remission from the tests tomorrow by late Tuesday or early Wednesday. We’ll post them as soon as we know. 95% of kids are in remission by then and Dr. Smith thinks that she will be one of them base on earlier test.

Thanks again!