Saturday, January 08, 2005

Hopeful for a Sabbath

Once again I’m out of my morning daze enough to realize that I do have a child with Leukemia. Maybe I’m just a bit dense in that way, but it’s taking a while to sink in. Actually, I think I was on to that fact a bit sooner this morning than normal. On about the 4th call from Abby, every 2 hours last night, to go “potty” I was pretty keyed in to the fact that something was different with this picture than say, 2 weeks ago when we all were sleeping through the night. Maybe that is one of the side effects of the drugs… frequent urination, I’ll have to look through that thick gray binder that they gave us. The only problem with doing that is then I have to read through all of the side effects, not my idea of “light” reading.

Hopefully she’ll be less grumpy than she has been. You know, when she was a baby she cried every night from 5-7pm, “happy hour” we named the time. After a couple months of that we started to call her ‘Crabigail’, but we soon pulled the name because we didn’t want it to stick. I’m praying that today she will be feeling more like her self. I want to see her get outside and play today, walk around our house instead of always wanting to be carried, and smile that big bright smile that lights up a room. I want to have a normal family Sabbath type day today and rest in God’s peace and provision. That is something we have been doing lately, in the last year, having a Sabbath. Just a day of rest, a day to not do any normal work, a family day, and a day to rest in God’s arms. Pray that we can have that type of day today, we could really use a Sabbath rest.

Abby did pretty well yesterday from what I heard, I had my first day back to work so it is all second hand info, but good info none the less. I think what has been making her so whiney is the fact that she hadn’t pooped since we left the hospital. I know, I’m talking about poop, but for her this could be a medical emergency. No really, let me explain… Abby is now getting to a place where her white blood cell count is getting low, white blood cells are a big part of the bodies immunity. If she gets a cut it has a higher chance to get infected when her counts are low, so if she is constipated, well lets just say she could get a cut in a place that has a high likelihood of getting infected. That would not be good. The doctor gave us paper orders to take with us if she ever gets an infection or just spikes a fever of 101.5 or above. If that happens we put everyone in the car and drive down to the hospital to check her in to Pres. St. Lukes.

Well so much more that I could say, but I’ll save it for another day. I've also got to go help give her the morning meds, and put the pulse/oxygen monitor on her toe. Thanks again for you prayers and support of Abby and our family. Have a good Sabbath!



Friday, January 07, 2005

Dr. Office Visit... and noodles.

<>Went to CHOA yesterday to see Dr. Smith, there is something very comforting about him, when he walks in the room you just feel like it is all going to be OK. We told him that and he said, “thank you for your kind words”. We all had to wear masks before we got into the office since we might still be contagious with the Flu. We definitely didn’t want to get others sick, especially kids that are immuno-compromised, so we all walked in looking like we were prepped and ready, going in to perform a surgery. In the waiting room was cool fish tank with all the Nemo movie fish right down to Peach… well, no Bloat that I saw, but very cool indeed. The walls were filled with professional black and white pictures of patients, most all of them bald, and there families. I think that is what got both Tiffany and I, the pictures, little bald kids, I’m not real used to or comfortable with that yet. I know it is going to be our reality, and when Abby looks more like that those pictures will probably be very comforting to us, but yesterday, to be honest, they were just another thing that woke me up to our new reality.

<>The appointment went pretty well, other than the rush hour traffic on the way home. Abby got another blood test and they had the results for us in a few minutes, shows you how important these blood counts are to them. The white count is down to 2,600 from the original 77,000 the night that we went in. Hemoglobin is good at around 12 and the platelets, the stuff responsible for clotting the blood is a bit low. She’ll get another transfusion of platelets on Monday before surgery.

<>Dr. Smith was optimistic and said that the counts dropping so quickly is a good sign, shows that she is responding well to treatment. Monday is the key day though, when they test the bone marrow, they will be able to see how much Leukemia is still there. If it is really low, and she has responded well, then the treatment can be less aggressive, thus less side affects.

<>This month we will have to be extra careful about infections and disease for Abby since her counts will be so low. When one part of her white blood count gets below 500 she will be considered neophylitic, (I think that is how you spell it) and that is the most dangerous time. Right now that count is around 1000. Also, she’ll probably start to loose her hair this week, that will be a bit rough, but we’ll love her just the same of course.

Those are the stats. Things seems to be going really good, she is and eating machine and I could write a couple stories about that but lets just leave it at she really likes spaghetti. Breakfast, noon, and night she wants noodles, no sauce just noodles. That’s a side effect of Predinsone, a ramped up metabolism. So noodles she will be eating, only noon and night for now. I’ve got to draw a line somewhere and breakfast I think is going to be that line. It seem like alcohol… “no noodles before noon.” :)


Thursday, January 06, 2005

Day 2 @ Home of the Journey

Ephesians 6:10-18

<>10-12. “Finally, be strong in the Lord and in his mighty power. Put on the full armor of God so that you can take your stand against the devil’s schemes. For our struggle is not against flesh and blood, but against the rulers, against the authorities, against the powers of this dark world and against the spiritual forces of evil in the heavenly realms.” Please read the other verses your selves, they are really good.

<>Just last week while we were in California with the family Robin and I were anxiously waiting to watch our new gift, a DVD, Lord of the Rings (LOTR): Return of the King. We kept saying things like, “Lets go to Mordor!” during the course of the day. Or if we were watching another movie with the ladies, like Princess Diary 2, we would comment during the flick, “where’s the swords?”, or “when does the princess lead the troops to Mordor?”, things like that. I love LOTR’s, everyone I know does. I think somewhere deep inside we all get this sense that we are part of a larger story and also a larger battle… We are.

<>I woke up this morning again wishing in some ways, in my groggy state, that this was just a bad dream. I think we all will have that feeling during this process. That split second of hope as you start to open your eyes and lift your head from the pillow, the hope that it all just went away, all just vanished magically, and everything is back to normal, back within the reaches of our short arms of control. I walked down stairs still with some of that groggy hope yet by the time I had passed by our newly stocked medicine cabinet that we assembled last night and had entered the kitchen to see our pile of drying medicine droppers the illusion had vanished. That is what that groggy state really was though, just an illusion.

There is a great scene in another of my favorite movies, Instinct with Anthony Hopkins, where he tell takes control from the physiatrist, Cubbin Downing Jr., and asks him what he has lost. “Control” Cubbin response? “No, try again”, shouts Anthony Hopkins character, another few more failed Reponses bring the tension up and Cubbins character in to a life or death situation in the hands of Anthony Hopkins character. Anthony Hopkins character asks him one more time, “last chance, what did I take from you?... write it!!!” Slowly Cubbin pens out the following… “My ILLUSIONS”. And with that Anthony Hopkins pats him on the back, and lets him go from him life or death predicament.

<>That’s what I feel like, when I wake up, it’s not so much that I’ve lost my normal life, or even my control of it, I never had that in the first place. It is more that I have lost my illusions, and thank God for that. We are in a battle, there is a bigger story going on here, and the forces of Mordor, the fantasy world that it may be, still rings true in our lives. So today we put on the full armor of God and expect big things in our lives. I hope this is true for your life today also.<>

Abby is doing good, a good day yesterday except for the tired & whiney attitude, but that is to be expected. We are going down to the Dr. office, Childhood Hematology & Oncology Associates (CHOA) in Denver today. Pray for a good drive and good visit!

Wednesday, January 05, 2005

A Gracious Gift - Support in Prayer and Finances

Dearest friends across the country - our family praises God for you and your prayer support as we continue Abby's journey. Below is an email that we received from one of our friends that has set up an account to be able to receive financial gifts for the expenses along the path to healing. This is a very humbling move on our part...we praise God simply for your prayers and love. Even so, this has come from outside of our family in love. So, read the following and respond as God leads.

In Jesus,
Abby, Anna, Mark, Tiffany and the rest of the extended family


Both Mitch and Robin were kind enough to help out by spreading the word of Abby at Summitview Church and also on the Blog page. We all know there are so many people out there wanting to help out and really are not sure what they can do. I figure the move that I am laying before you will be easier for Mark and Tiff then receiving 37 Spiral Cut Hams. We all know this battle will include multiple co-pays, trips to Denver, hotels stays and so on which will be a huge drain on the family, but hopefully we can help out!!!!

But anyhow, I am the custodian of the account for right now. The custodian is simply an intermediary so people don't think this is the parents acting alone. As God leads you in your heart, you can donate money to the Abby account in either one of two ways:

1. Send the bank a check made out to Bank of the West with instructions to deposit in the Abigail Schreiber account with the account number on the check. Or make the check out to Abigail Schreiber with the account number or make it out to Loren Buckmaster for Benefit of Abigail Schreiber, again with the account number on the check.

2. The preferred option is to send the checks to me directly. They can address the checks the same as above. This way I can keep tract of who has donated and pass this information along to Mark and Tiff so then can send thank you letters or whatever they please in the future.

Okay I know this e-mail is rather random but I guess I'm pretty excited to get it going. But this should be all the information: (if I forgot something please let me know)

Savings Account # (please email Loren or Matt: see below)

Bank Name and address: Bank of the West, 426 S. Link Lane, Fort Collins, Colorado 80524. 970-267-3700

Custodian Information: Loren Buckmaster 2102 Lincoln Street, Longmont, Colorado 80501.

Questions or concerns can be directed to Loren at 303-589-8624 or Matt Harmon 512-506-9629

Again thank you to everyone who is helping out with this. I know we all love Mark and Tiff like a brother and sister and their wonderful kids as are own!!! I know this will be a huge help for them in the coming weeks and months. The more we get the information out, the more it will help the family and most importantly Abby!!!!

Fix a Van?

Hey Fort Collins folks, I don't know if anyone is able or would like to but I thought I would just put it out there just encase.

Our van washer fluid sprayer broke on the way home from the hospital and now is still broke.

I haven't been able to fix it, not really much of an attempt but I took a look at it and it seems like the line is clogged or the motor got burned out as I tried to spray non exsistant fluid onto the grimy windshield.

We have an appointment on Tuesday at Community Automotive here in Fort Collins but if anyone wants to lend me a garage and some tools this weekend, I may take a crack at it.

Also pray for our whiney child, she is pretty tanked, pretty tired. Pray for peace in our house as it is a bit chaotic right now before dinner becuase of Abby's constant demands.

Got to go and put the chaos in check.

Abby hospital pics

Here are some good pics from our Hospital stay.

Love you all

A nice big smile

She got her appetite back!

What a sleeping beauty huh?!

We'll have more to come, email me if you want to be on the snapfish family photo emails... Then you can see them all:)

The new "normal"

So we are back at home and after a good night sleep I woke up and realized the Abby still has Leukemia. Kinda weird huh? I bet you all feel that sort of surreal feeling too. It's going to be good, I know it is.

So, here is our new normal day.

  • Wake up, milk and meds, this consists of prednisone, and some Tamiflu for now.
  • Breakfast, and then wash out her mouth with a couple different washes and Nystatin to keep her from getting mouth sores or Thrush.
  • Lunch, a couple meds and an IV given anti biotic for this week only. Then the mouth wash/nystatin.
  • Dinner, Prednizone, Tamiflu, mouth wash and Nystatin.

We also have hand sanitizer EVERWHERE now and will be using it for us, her and guests. Other than the cleaning thing, I think things will be pretty normal. Anna will be rejoining our family today after staying the week with the Majeskis. (Thanks Mitch and Shelly!)

Here is our verse that we memorized today, claim it with us today if you would like.
Pslam 28:6-7
Praise be to the Lord for He has heard my cry for mercy. The Lord is my strenght and my shield. My heart trusts in Him and I am helped...

Tuesday, January 04, 2005

Just A place to put comments

If you are intimidated by this blog format and have no idea where to post a comment then just put it here:)

All I can say after reading this blog now is WOW. I speak for my whole family when I say, we are loved.

"We Home"

That's what Abby always says, "we home". I'll teacher her more verbage later as her speech gets better:) but indeed, we are home!

Good to be home too. We entered our very, very, very clean house (thank you for all that helped... it must have been an army!) tired but glad to be home. Abby promptly sat down to "watch a little TV", had a snack and is now taking a nap.

I've unpacked some with Tiffany and currently the ladies, Tiff and her mom are out picking up the large quantity of prescription drugs that will be part of the regiment here to come. They are also finding a place for Vicky, the mom, to stay for a couple nights while we try to get our lives back to normal... whatever that is going to look like:)

Thanks again for your prayers and thoughts, I haven't read the blog yet, nor email but I'm sure there is a lot of things to thank people for.

Love you all,

The Daddy.

Homeward bound in the snow

9:23am Tuesday, Jan 4, 2005

I sure wish I could update this blog in real-time while I'm sitting by her bed instead of just writing and uploading later but that is how it is.

<>Anyway, we are going home today! Back to restart our new format of life. Things have changed. Last time that I left the house, as far as I knew, my child just needed some more testing. In reality though, it was Leukemia and now I will walk back through that door into the same familiar physical house, but also a house that will be oh so new. New procedures to keep it clean, new ways that I play with my daughter, new types of hugs; those types that you give that make you never want to let go. New priorities, new emotions, new hats, and a dominating new medicine cabinet packed to the gill with medicine and syringes, cleaners and gauze; more chemicals than any reasonable person would want in their house. With all of this newness, will come tears, stresses and lots of comfort and peace from God. <>

Well, here are the stats and praise the Lord for going home! <>
Before we go Abby will be getting another transfusion of platelets to bring her blood count back up to a more normal level. This will help her from bruising, and keep her blood clotting in a healthy way. They also will start her on a new antibiotic which we will be giving her through her IV at home for a week since she had the Flu and all of those infections, just a safety precaution.
Well, Abby's a bit grumpy so, till later.

Treatment day 1 of Chemo

Monday Jan 3, 05. 12pm <>

Today Abby will start the long process of Chemo and other treatments that is needed to cure her of Leukemia. She is in good spirits and currently is playing with her igloo set, great present by the way Julie. I had a pretty big cry this morning; I think we all did here. Mostly from the reality setting in that today she will be starting Chemo therapy. Pretty nasty drugs really, very necessary indeed, but nasty. It just hurts to know that these chemicals will be eradicating all of her white blood cells, cancerous and normal. After I went through my box of Kleenex privately in the front seat of the van I felt better. Tiffany had her moment too, as did Vicky, when thinking about the effects of Chemo on such a little girl. I know any of us would take this burden from her if we could, I'd jump in her bed in an instant to give her back a more normal childhood... <>

But that's not how it work, not how it is suppose to be, she's one of the 3000, one of the millions more that have similar fights with different cancers. This will make us all a little different, a little better I believe; it already has changed me. I'm going to donate blood at the first chance that I get. I already need to thank 2 donors for the life that they have gifted my daughter through the units of blood they gave her. She happens to be O negative, one of the rarest blood types around. I have pretty rare blood too so hopefully, when I get a chance to give, my blood will be as precious of a gift for someone as my daughter is a gift to me. <>

Thanks again for the prayers and love, and again, please comment anywhere you like, even if it doesn't have to do with the topic. You don't have to know what to say, I don't even really know what I'd want to hear, or to that extent, what I would say... Just saying something will mean a ton to us all. <>

Till later

Sunday, January 02, 2005

Another perspective today

Our blog is our journey with far, Mark (the dad) and myself (the grandfather) are going to be posting. If you have read all the stuff below, you know pretty much the full truth as we begin our journey to healing. I was especially encouraged when I looked at the "end date"...there will be a time where this will be over!

There have been a number of thoughts that have gone through my mind since yesterday and the beginning of this blog. First of all, we need God! I thought about the 1000s of hospital visits I've made over the years when I was leading local churches. So many people in hospitals are desperate, lonely, depressed and negative people. Abby, Mark and Tiff are lights in a dark place. Yes, we have a battle to face...but God will use Abby in HUGE ways. She is anointed of the Lord...Mark and Tiff will minister to so many people with simply having HOPE in what God can do. Secondly, I am so blessed that we have a LIVING hope. Look at these verses from 1 Peter:

1Pet. 1:6 In this you greatly rejoice, even though now for a little while, if necessary, you have been distressed by various trials,
1Pet. 1:7 so that the proof of your faith, being more precious than gold which is perishable, even though tested by fire, may be found to result in praise and glory and honor at the revelation of Jesus Christ;
1Pet. 1:8 and though you have not seen Him, you love Him, and though you do not see Him now, but believe in Him, you greatly rejoice with joy inexpressible and full of glory,
1Pet. 1:9 obtaining as the outcome of your faith the salvation of your souls.

God is refining our precious Abby...He is preparing something that is beyond our vision now but deep within our hearts for God to reveal. That's hope! Lastly, I'm so glad we live in community where we can share this journey with people literally around the world. Praise God for you...your prayer before God...your support, emails, and compassion.

More to come...Rob, out!

Two and one half & 2 and ½

She’s 2 & ½, not even 3, well, a month shy of 3 almost to the day. Two and ½ years ago we were still living in San Diego or had just moved back to Colorado. Two and ½ years ago, I was applying to start my masters degree at CSU. Two and ½ years ago, I was playing with a new born baby whose name was Abigail. I was over my initial sleep deprivation and really starting enjoy being a Dad. Two and a half years is all that Abby knows as life… For the next 2 and one half years she will be fighting off this cancer.

That’s how long the treatment is, yup 2.5 years. Nice that we start it off in a new year, makes thinking about treatment dates pretty easy. So July 07, probably around the 4th. What and independence day that will be for my little girl! Oh Lord, help us get to that day as one ecstatically happy family.

The hospital stuff

The hospital stuff

<>I’d love to write all that happened so far at the hospital but the information would be overwhelming so let me just list off the basics.

<>Abby is doing good. Her fever is gone most of the time, and the cough is sounding productive. I’m almost over the Flu too and Tiffany maybe is a day behind us in her recovery.

The first night we met with the doctor, Dr. Smith, a very nice and kind man. He told us the scoop. She has some sort of Leukemia, to find out what specific type it is they needed to take some bone marrow. During this same surgery they would be doing a spinal tap to check the fluid for cancer and give her a dose of therapy medicine, chemo, in her back. While she was out they would also install a port in one of the veins in her chest so that they could administer drugs and take blood through it instead of an IV. She will have this semi-perm IV type port called a Broviac in for the entire course of the treatment.

She is doing good from all of this, we are about as tired as her. One more blood transfusion today and her counts look really good. Tomorrow she will start Chemo therapy and we will probably be taking her home on Tuesday.

Peace out.

How it all got started

Looking back on this I think we started to see some signs maybe a month ago like her telling us that she didn’t feel good over and over again, or that could have just been for attention as we thought. The big stuff started though on Christmas day, that night. She had a fever of 102 but no other symptoms. The next day was Sunday and since we were in California we decided to go to visit all of our friends at out old church in San Diego. Abby was fine for the whole trip and all day Sunday. On Sunday night or Monday morning she started to get a cold, runny nose, cough, fever, etc… this turned out to be the Flu. I got it on Monday or Tuesday too, and Tiffany caught it too, but as far as we knew it was just a nasty cold. On Tuesday we found this scary rash on her feet, little blood blisters under the skin, and decided that we should take her to urgent care. Her fever had been about 103 for a few days at this point so off to urgent care we went. The doctor there ruled out Meningitis which was our biggest concern from the rash and thought that it may possibly be HSP which is a viral infection that cause a similar rash. She told us that if we wanted a blood test that we should go to the emergency room. We went home and stressed about what to do, we call the Dr. on-call in Colorado to get a second opinion as to if we should take her in to the ER and if flying back on Wednesday would be ok with such a high fever and this rash. He thought it would be ok, I didn’t want Abby to have to go see another doctor and lose more sleep so we made the decision to wait until we got home.

Wednesday she seemed better, the fever was done because of the Ibuprofen and Tylenol flip flop that we were doing was bringing it down and she even felt like playing with play-doh for an hour or so. The airport was fine, and even with the high fever she was traveling quite well. About mid flight though, she go a bloody nose that just wouldn’t stop. It would stop for a little bit but then she would cough and then it would start again. A very long hour or so went by until the plane landed and we got off. Abby started to cough and again and this time there was blood in it. Pretty scary stuff to be honest. We were so stressed already and now this! We called the doctor on call again, which that night turned out to be Dr. Samuelson who goes to Summitview with us for church. We explained the whole thing and he told us what to watch for during the night until we could see him. The whole way home as she coughed and started the nose bleed again we were trying to decide if she needed to go to the ER or not. The nose bleed stopped finally, the coughing subsided, and we tried to get some sleep and still stay with Abigail through another long sleep deprived night.

You are part of this journey

This blog is not just for information, but for thoughts, for community, for the outpouring of all the things that I so often hold inside, for God’s love in the midst of thing that I just don’t understand, like cancer, like kids cancer, like my daughter being one of the 3000 kids yearly that get Leukemia. Please join Abigail Vivian Schreiber as she approaches her 3rd birthday in this journey that she has been cast into, a journey that I think she will do well on, the journey that include lots of tears, lots of smiles, a strong faith and a persevering spirit. Your thoughts, comments, prayers, and stories are more than just a trivial “hello”, they are an integral part of this healing journey.

Mark's intro

4:30 am Jan 2nd

I can’t sleep so I figure that this as good a time as any to blog. I’m going to post these thoughts in chronological order for simplicity sake until we get up-to-date.

<>As most of you know Abigail was diagnosed with Leukemia this week and also had Infulenza B, an ear infection, and some pneumonia. She is in the hospital here in Denver at a pediatric oncology floor at Presbyterian St. Luke’s. Look at the Hospital Info post for the details. <>

Most everything is under control at this point except for the cancer which they have to wait to treat until she recovers a bit more from the flu. Leukemia is a blood cancer, if you didn’t know like me, and to treat it they need to kill all of the white blood cells in her body. The reason we have to wait to treat the leukemia is because the white blood cells are a big part of the bodies immunity and she needs that right now to fight off the flu.

So many things to say, I’ll try to break this in to numerous posts for easier reading but let me just start here in the beginning chronologically taking you through the events leading up to the diagnosis, the stats of her particular type of Leukemia, and her prognosis.