Friday, January 14, 2005

Back home and all is well

Just a quick note to say that Abby is fine. She stopped throwing up within an hour of being on IV fluids and then slept most of the rest of the night, from 2:30am on. Tiffany and I also got a bit of shut eye but we are still pretty tired. They released Abby from the hospital at about 11am, she napped in the car, napped at home and went to bed early. I think we'll be doing the same.

This running to the hospital thing is probably just going to be a potential 'normal' part of our life. If she gets a fever of 101.5 and has a ANC of under 500 (the infection fighting part of the white count) then we belt her in the van and make haste down to Pres./St. Lukes. Even though she didn't spike a fever last night, they sent us down because the throwing up could have been a pre-cursor to a fever from an infection.

Crazy new life style huh? I hope this isn't going to be too common. With some kids it is and others it's not. We're praying that she is one of the 'not'. :)

To bed we go.

Meanwhile, Back at the Hospital :(

Yup, back here at good ole Pres./St. Lukes. What time is it anyway? Yikes! I'll make it short...

I had this whole post ready to post up in the morning. It was going to tell you all about Abby's follow up appointment at CHOA, how many peanut butter crackers she ate, and stuff like that. I also had mentioned that Abby's blood count was continuing to drop, 2600 for her total white count, and that her ANC (which is the immunity, infection fighting part of the blood) was down to 200 (extremely low). Any thing under 500 and we can't take her out in crowded places becuase of her immunity and suseptability to things. I also had mentioned the fact that Anna was still not eating very well from her stomach bug, and that Tiff's mom had caught the bug from probably Anna and had couldn't vistit again until 3 days after her last symptoms because of Abby's low ANC count.

Well, instead of all that I get to tell you that at about 10pm Abby started to throw up. At 10:30 again, and we called the doc. They told us this was not a good thing for her to be doing with her counts low especially if she gets lower GI stuff going on. At 11ish after throwing up a couple more times, and starting to have to poop more, we called the doc again and she told us to drive on down to Denver. 11:30ish, we allowed Vicky back in the house from her quarentine, to watch Anna and sleep at our place and we loaded all of our pre packed bags plus our puking daughter into the van and hauled down to Denver.

They took blood, urine, plugged into her Broviac (Central Veinious Cathoder) port and are now pumping some fluid back into her to keep her hydrated. They will also put her on antibiotics encase this is part of an infection that we don't know about. I think she has stopped throwing up for now. Anyway, I'm off to bed.

If anyone at Frontier reads this before 7:45am could you cover my class... I'm in Denver.

Everything looks like it will be fine here. But better safe than a big blood infection.

Thursday, January 13, 2005

Tonight, we need prayer!

This is Robin with a quick update and request for prayer. I just got off the phone @ 11pm California time...that would be Midnight on Thursday night Colorado time...Mark and Tiffany are taking Abby to the hospital. She has had an attack of nausea...we don't know what could be the problem, but these are the issues that are worrisome because of the susceptability to infection since Abby's blood count is lowered due to the chemotherapy. Please join us in prayer that this is nothing serious and that Abby will be OK. Mark and Tiff and my wife, Nana Vicky need prayer for calm and confident hearts.

Ever feel like you’re in a movie?

Things have been pretty surreal lately, really vivid you know, sharp colors and really feeling the cold and sun on my skin. Do you ever feel that way, like everything is just so vivid? I took a walk the other day, up in the foothills near our house. It was pretty muddy from the melting snow but the sun was still out and I just felt like I had to get out in nature. As I was walking, I felt like I everything was jumping out at me, I was very aware of my glasses frames, and the sound that my feet were making on the muddy gravel path. It was the coolest thing, and I’ve had lots of these types of experiences lately. I feel very alive. I think a part of it is because I can’t really live “in the middle” any more. I’m dealing with powerful stuff here, powerful emotions, powerful love of the people around me, powerful sadness, and yet an extreme sense of peace. I can’t just “get through” the days any more, or pretend that life is “ok” and that is a great thing for me. Maybe you don’t feel the same way, I don’t know, but for me I am soooooo glad that God has given my family such a wake up call to see what this life really has to offer, the hurts, the beauty, all of it. Nature, the way the snow clings to the branches, how drenched we feel in love from all of you out there, even Abby’s hard days… all of it, such an awesome example of God in our midst!

As you can see, I love being outside, so does Abby. All summer we would go over to the park, or find a short trail near our house to take a walk on. Her favorite thing to do at the park is to climb things that kids her age should not be climbing on. If she is in a really good mood, when she gets to the top, she’ll catch my eye with hers and then jump to me, hopefully I have a free hand, or better two; pretty fearless little girl really. She also does this at home, usually from the landing of our stairs she’ll just jump to me, a good 7 stair leap, with reckless abandonment. What faith!

I love that my daughter can teach me about faith from her playing and I think I might just be ‘getting it’ now. There is a lot of trust in that little girl and a lot of faith. Maybe it takes something like this to happen to us to get rid of those calluses that have formed from our reaction to the hurt in life. Maybe I've felt like I've jumped at times, and not been caught in the way that I wanted to. Maybe things like this happen so that we won’t continue to live in the middle, always keeping things in order, in control, so that we can save ourselves a little pain. Maybe I need to take a page out of my little girl’s book, learn to just catch God’s eye and leap.

Today Abby jumped to me on the stairs, only one stair but I bet it seemed like 10 to her… It makes me smile to see her playing like this again, to see her not becoming callus from this new lifestyle that she has been thrown into. I can’t wait to continue to see her get her climbing spirit back and also see her throw her self back into things with the same type of faith and trust as I’ve seen from her in the past. Maybe not the full 7 stairs, I don’t know if I trust myself for her sake, but definitely that same spirit.

Off to live a day in reckless abandonment and faith.

Wednesday, January 12, 2005

A Word from Tiffany

Well, here's my first blog entry. I didn't even know what a blog was before Christmas and now I know what they are, why they are called "blogs", and my daughter has cancer. A lot can happen over Christmas break. I am totally blown away be everyone's love and support. You are all a part of our healing journey and I thank God for you. I was sitting in my living room today looking out the window at the snow and thinking about this blog and how encouraging it is for me. I can read encouraging words, funny words, words to keep me going at any time (if my computer is actually working that is!) from all of you and feel God's hand comforting me through you all. So many people are asking me how I am doing. I am somewhere between sadness and hope. I so often look at Abby and feel my throat closing up with the thought of losing her, or just having to watch her go through so much. Then so often I also look at her, or outside at the sky, or I read encouraging words on a card from a friend, or a bible verse gets me, and I feel really alive and like I've caught a glimpse of God's big story and the part I play in it, the part Abby plays in it. So we are doing this cancer thing, one day at a time. You all can pray for me as Abby's mom. I need God's strength to not fall apart when she is suffering. I need perspective to see things as God sees them. I need patience with Abby when she is grumpy. Thanks for you prayers, they are truly felt and appreciated more than any of you will ever know. Here's to Abby's healing!

Tuesday, January 11, 2005

Quick update: Bone Marrow results

Dr. Smith called Tiffany this afternoon and was very optimistic as to how Abby is proceeding and responding to treatment. She has about 10% cancer cells still in her bone marrow but that is still really good. She was at about 90%-100% a week ago, so that is a huge drop. This does mean that next Tuesday they will do another bone marrow test, and spinal tap. By then it should be under 5% and she would still be catagorized as a 'rapid responder'. Pray for that.

We also found out yesterday that she is nutrophenic (I think that is how you spell it). Basically that means that she is at a higher risk for infections because the infection fighting types of white blood cells is below 500, she's at 400 currently.

Abby will go back to Denver for a check up on Thursday and then again for the Chemo treatment and bone marrow procedure on Tuesday after Dr. Rev. Martin Luther King Jr.'s Birthday.

There you are... short and sweet.

Abby's Second Treatment

So here I sit on this foggy morning, day 9 of my daughter’s Leukemia treatment. To be honest, yesterday was really good overall, but highly stressful for the first 2 before they sedated her. Other than not really understanding why we were back at the hospital and the anxiety that probably goes with that, I think the bigger problem was that she hadn’t eaten since dinner the night before. With the Prednisone that she is on, she eats continually, as you may have read about. She was so hungry, tired from not sleeping very well the night before, and probably anxious about why we were back at Pres. St. Luke’s. Basically she was an out of control grumpy, whiney, tired and hungry child. Not the Abby that we all know and love. I don’t even know if I can explain the emotions that go along with being at your child’s bedside in a hospital and not being able to comfort, help or explain to her what is going on. Tormentingly stressful might fit, maybe too harsh though. Finally they gave her some Benedril to help her settle down and sleep. That was a very peaceful sleep for us all and finally our teeth became less clenched as we relaxed at the sight of our little precious daughter sleeping.

The Anesthesiologist finally came in and gave her a drug to relax her before the took her off to the O.R.. This Dr. was pretty funny, and would say things like, “this one is a good one, it will make her feel pretty goofy pretty quick.” Or, “This will be great one for her, right into la la land.” These type of comments always make me wonder if they get to try them all out like waiters do on a wine tasting night or maybe in med school when it says lecture and a “lab” they get really excited. I don’t know, just strikes me as funny and odd. I am glad for these Dr.s thought because bone marrow aspirates aren’t the best feeling procedures from what I’ve heard. I’m not sure how many more times they’ll take a bone marrow sample but I know it is at least 2 or 3 more times, probably more since that is the only way to conclusively see how she is responding to Chemo.

The rest of the day was good, she slept a long time in the recovery room, and that was a blessing. We finally woke her up for her appointment at CHOA at 1pm. We wrapped her in a warm blanket and took her across the street, up to the 5th floor and after a quick sit in the waiting room, they gave her a room with a view. A cool little room actually with a twin bed and TV with a VCR/DVD player for movies. Over the next few hours, till 4:30pm, she ate 3 packages of peanut butter crackers, a bowl of noodles, a bag of microwavable popcorn, and a glass of milk while we waited for the chemo drug to drip into her IV. We talked to Dr. Smith who, thought things are going pretty good, while Abby watch Stewart Little and Tele Tubbies. Tele Tubbies is about the weirdest show that I’ve ever had to sit through, but hey my daughter has cancer, so I’ll watch it with her.

As for all the tests on the bone marrow, we’ll know more today. Basically if she has responded well, then she’ll continue the chemo treatments till day 28 when they’ll do another bone marrow sample. If she hasn’t responded that quickly as of yesterday, then they’ll probably do another sample next Tuesday, like they did yesterday, to see how she is responding. Pray that she is a rapid responder, and has less than 5% cancer cells in her bone marrow on today’s test and definitely on next weeks test if that is needed.

Thanks again for all of your support and prayers.

Sunday, January 09, 2005

A great day

Philipians 1:6 Being confident in this, that he who began a good work in you will carry it on to completion until the day of Christ Jesus.

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Short post today. It seems like it should be because it is Sunday. Anyway, Abby did really good yesterday, thank you for your prayers. We played in the snow where she made a snow angel on the picnic table and wiped all the snow off of the benches. We also had a tea party while Tiffany, Vicky, and Anna went out to do some shopping. It was nice for me to have a little 'date day' with my girl.

She still is way into 'Bunny Mac & Cheese', ya these little pastas do look like bunnies, I'm not sure if this is a good thing or a curse. To open the box, you push the tail in and then rip open the box... kinda cute, yet kinda violent for a kids food product. I get tense trying to open it with out ripping Mr. bunny's little fluffy tail off. Still she likes it so I like it and she loves to help make it so I'll continue to support the bunny mac and cheese company. If we run out it may be a crisis situation though. I think in a pinch I could boil up some spegetti and tie it into bunny shapes... It might fool her, you never know.

Tommorrow is the Day 8 appointment where they put her under general anestisia, do the bone marrow samples, spinal tap sample and chemo treatment, and then wake her up for more. After she is done at the hospital, out patient, we will take her over to the clinic for fun filled afternoon of chemo treatment. This part takes at least 2 hours for the drugs to be given. I bet she will like this part because she will get to go in the kitchen.