Fun times

We had a great time digging through peoples junk this morning. Hey their trash...our treasure. Suprisingly James (he who hates garage sales)got the most things. We also dropped by the Haughery's house to say hello. They were having a work day and chopping up some trees and throwing them in a chipper. James couldn't resist trying it out. (suprise suprise) We had a laugh on the way home. It took forever to get home because their was a parade so we had to zig-zag (or jig-jag as we were calling it) all over the place. WE saw some boy scouts (james asked if they were getting barit madges for crossing the road) then we all got silly and couldn't stop laughing. Meanwhile Alivia was fallng asleep. Sweet girl.

Tonight my parents are going to watch the girl and James and I are going to a friends for a cook out. Should be a barrel of laughs. We are definelty excited.

Many people have asked me what they can do to help and I can never think fast to give a good answer. Thankfully my friend Jamie is organizing my life for me. One of the things she is doing is organizing meals for 2 or 3 nights a week. I just can't seem to come up with meals right now. And cooking takes a bit of concentration and I just can't muster it. So if you are able or willing give Jamie a call to sign up for a day. That would be really helpful. Her number is 413- 2537. Just know if you call before 4pm she will be at work and you will have to leave a message. Thanks.

Thanks for today....cards from Kathy Kelley (my dad's boss), the Bowden Family (James' aunt, uncle and cousins), Paul and Cheryl West (James' uncle and aunt), Mary Ann Kisic (and cute stickers for Livi)

Also....4 cute books from Kathy Schloemer (my high school math teacher) I totally forgot to thank you earlier sorry about that, and cute hugging monkeys from My uncle Rob. Thanks everyone!

Above all thank God for another good day for Alivia. Each day is such a gift. I pray that they will continue to be good.

It's friday and who doesn't love a good friday. Its the last day of the work week which means time with my hubby (which I take very seriously....fun should always be taken seriously). My parents gave me a chance to go to the mall with my great friend April. She is the mother of the cutest twins, Samual and Grace. We both had a great time but also kept saying how weird it was being without kids for a few hours. Last time we went to the mall was a bit crazier because April had the double wide stroller, Leslie had the one in front one in back stroller and I had Livi's stroller. We were a sight. And left a wake of clothing in our path...they have small but really quick hands. Anything they could reach they did and it was left in our wake. We had a really nice time today. We missed our kids but enjoyed uninterrupted conversation and unhurried purchase decisions.

We live is "the land of the midnight sun" (as my mom is calling it). The spotlights are even closer to the house tonight. My mom thinks it might be in her bedroom tonight (that is why they are leaving tomorrow according to my dad). We are going to some garage sales in the AM. If you know my parents you know this is their all time favorite Saturday AM activity. In fact my dad is venturing out early to 3 sales that listed records as something they are selling. (if you know my dad....records are it)
And then we all are all going to hit a few closer to home. I am getting to love garage sales. I just do them a bit different than my parents. I am a once over kind of girl. If nothing catches my eye in the first 5 min then I'm done. My mom (and dad) are a bit more thorough. James will be our peacemaker (as always).

Alivia did wonderfully today. She even slept well last night. She must have known that the day before as an important one and was excited. Hopefully we're back on track. The medicine is helping too I think. She is doing more and more cute things each day. Her newest is slapping Pap-pap hi-five...see Uncle Aaron we're working on it.

Thanks for today....cards for Alivia from Sara Rankin, Aunt Kathy (and Rick), Anita and Bill Kennelly (and thoughtful gift)Rachel, and Lynn Mckee (thanks also for the Walmart G.C....it will be fun to spend)
Cards to the nurses from Rachel and Sara Rankin...keep them coming

"She looks good"

To truly understand our day we have to go back in time to last night...where it all began. Alivia went to bed at her normal time and slept till midnight. (I didn't go to bed till midnight cause we were up chatting on the phone) Oh good I thought...just like the night before where she ended up sleeping 8 hours after her midnight bottle. No such luck. She woke up at 2:40 and was up for the rest of the night...minus some cat naps while being held. She would fall asleep but the second her bed was close by she was awake and crying. So you pick her back up and she would fall instantly asleep again. I walked her from 2:40 till 3:40 sleep for an hour while Mom walked her. Took her back at 3:40, changed a diaper and walked her till 5:20. At 5:20 my arms we dead and I was so tired I was getting silly. My dad walked her around downstairs in her umbrella stroller till 6:30 then my mom took over till 8. So no one got any sleep last night. We were all tired and just a little over sensitive. Except, of course, the queen who was amazingly happy. All those cat naps added up to a good night sleep for her..Go figure

"She looks good" was one of the lines the doctor said more than once. Her levels all remained constant (the white cells dropped about 9 thousand but he said they were amazingly stable). He talked to at least 2 specialists..Although he said he talked to 3 he didn't discuss the 3rd one. One was the JMML specialist from Alabama who said that people don't have that many eosinaphils with JMML. There is still one test outstanding but they are pretty sure its not JMML. The one JMML expert said that he knew what she had and mentioned a parasite (from either a cat or a dog) that he had seen in 2 children that made their eosinaphils really high. Unfortunately our Dr. Had already checked for that parasite and it came back negative. He did say that he was going to make sure that both the cat and dog version of the test was run on her blood. So there is still an outside chance that they only ran one version. That is what everyone is hoping that it comes back as this parasite. He said we are getting closer and closer to it being hyper eosinaphiliac (spelling??) syndrome which is a disease they usually see in adults over 30. All of the experts that he talked to said they wouldn't be treating her yet either since they aren't sure what they are dealing with and their have been no side affects yet. They all said they would continue to try to figure out exactly what it is. Once you start treating it changes the way the blood and marrow appear and it would be impossible to diagnose afterwards. So everything stays the same for now. We continue to go along like we have and pray for no negative side affects.

One of our other big discussions was about a second opinion. He said he would welcome one and might actually recommend one in another few weeks. He told us of some people he would recommend. We also talked about a doctor at Children's Hospital of Pittsburgh who recently treated one of my dad's friends kids (15 yr old boy with a lot of similarities to Alivia's blood work) and our Dr. had heard of the doctor (said that he was Nationally known) at Children's and said maybe we could get our second opinion from him if we wanted. So now we have to consider where we will go. We have about a month to decide and our doctor will make all the arrangements for us including sending all the info they already have on her. She is going to have another bone marrow biopsy and a lymph node biopsy anyway so maybe we will be getting it done in Pittsburgh (the Allen half of the family just got really excited that they might not be that far away for a little bit). We haven't decided but it would be nice to be in a hospital that is still near a lot of friends and family (since I grew up an hour from Pittsburgh)

So it was a long, long, nap-free day. She finally fell asleep on the way home but not for very long. While we were at the doctors we figured out one of the possible reasons she didn't sleep well...she has the beginnings of an ear infection. (getting anti-biotic tonight)

Pray requests...better sleep tonight (lack of sleep makes us all a little crazy) , ear infection to heal quickly, WBC's to continue to drop (if they continue to drop 9 thousand each week that would be amazing), and for the parasite test to come back positive. That would be the best diagnosis!

thanks for today....
Great salad and cutey card from Tina, Dwayne and Owen Lapp
Cards from Jerry and Peggy McGarvy, Bill and Anita Kennelly (and thoughtful gift), Frank and Carol Frederick, Nikki Lilly, Matt and Erica Aikens, Jill Piper, 2 cards for Alivia's nurses (thanks Marmie and Briana!!) Keep those coming. And sweet cards and a fun baby activity book from Eric, Stephanie, Mary, PJ and Sarah White (James' cousins....or second-cousins..) Also a letter from Jim and Jean McClements.

I am collecting nurse thank you cards and will give them next Thursday..so you have a week. I would rather this next week if you are planning on sending a card make it to the nurses and not us for a week. That would be so great. I want to shower them with affection since they were so amazing! Thanks everyone.

uhhhh...hair cute

You heard me. I said hair cute. My cut feels cute. I loved catching up with Darcy and being a normal girl for a bit. We had a nice time.

I'm pretty nervous about tomorrow but also optimistic. She is doing so well (outwardly) and he did say that we wouldn't be admitted unless she was showing "signs of distress" (don't know if that is positive or not) but she is not showing any signs. So hopefully we won't have to stay. But the numbers are still an issue. Please pray that the white cells go down and the red and platelets go up. That would be amazing and an answer to prayer.

Thanks for today...

Cards from Marmie (you are the sweetest), Melanie and Bob Klingensmith, Christian and Murial Brigouleux and Grace United Methodist Church Bible Study (Kathy Woods)
A great pink blankie from Aunt Kathy, and a card from Victor and Mei Lan (my mom's boss and his wife)
Also thanks to Andy Knutsen for mowing our grass and Christine Lewis from a great dinner (very yummy)

Hopefully we'll be blogging from home tomorrow night also.

Bright Spot

To some this may seems a bit fanatical or crazy...but I love getting my hair cut... probably more than I should. I found a salon and a stylist that I love about 4 years ago. After cutting my hair for over a year my stylist moved...to Colorado (little to far to go for a hair cut...even for me). I stayed at the same salon with other stylist (who are great) but no one is Darcy. So I get mail the other day from my salon and its a letter saying that Darcy has returned and would I like to schedule an appointment with her?....UM YEA! I called about 5 minutes later and scheduled an appointment. Its tonight. At 7. My parents will be here with James and between the 3 of them Alivia will be overly cared for so I can relax for an hour and get my hairs cut. Can't wait.

See even in the midst of the craziness God is still providing little suprises for me. Okay I'll stop talking about it. I'm just crazy excited. Told you I'm a fanatic.

T minus 20 hours till my mom and dad arrive. I am so excited.

I don't really hav any new things to say today. We are living each day, enjoying the amazing gift that is our daughter. She is so sweet and precious and I wouldn't trade her for anything.

She has established a new sleep pattern that is a bit on the crazy side. I think its because of being in the hospital and waking up with gas that one night. She goes to bed around 8:30 wakes up at 11:30 or 12 crying and doenst' want to be held but doesn't want to be put down. After a bit she calms and falls asleep but if I put her down she starts to cry again. Then around 1:30 she falls asleep and gets up around 6 for a bottle and sleeps till 9. I'm getting enough sleep but would love to sleep at night...Oh well. I love the moments we get when she is just falling back to sleep and she is so calm. She twirls my hair and it is so cute. I will gladly put up with the crying if I get that moment.

Another Monday

I called our nurse today (Pam- super nice women.) She is so helpful and quick to answer all my questions. She explained what night sweats (totally soaked through all pj's from head to toe)were and why we would be looking for them (signs of Hogkins disease) which was reassuring because I explained how Livi is and she said it sounded like normal baby sweat. I also asked about the gas and after we discussed it we figured out it was probably from too much dairy. I have stopped giving her whole milk and will start it again in small amounts next time. She is also going to talk to our doctor and find out what would be the reasons that he would admit us to the hospital again. That way I will know what he is looking for and be able to look for them also. That will help me to feel like I can do something between visits. And also plan a little better for each visit (to pack or not to pack that is the question)

Thanks for today...
I forgot to thank my aunt Lisa and Marmie for calling yesterday.
Yummy lasagna from Pauline Williams (and family)
A sweet card from Marmie
The goodie bag from Beth Chase. I am going to have the smoothest skin around. and the best breath. Thanks Beth.

I would love to have some thank you cards for the nurses on the 7th floor that I could drop off. I listed all of their names in a previous blog but you could also write a not to the 7th floor nurses or the West Wing Nurses or something along that line. Just brief notes that are signed your name and friend of Alivia Haughery. I am going to go up and drop off a note from me on Thursday so if anyone else sends messages by then I will drop them off. Otherwise try to get them to me by next Thursday. our mailing address is: 2768 Lititz Pike, Lancaster, PA 17601. It would be so amazing to shower them with thanks.

Love Fest 2006

My brothers love to have fests...eat fest, sleep fest etc...I have received so much love that I would like to dedicate a blog to giving some back.

I love James. I love that he works so hard and still comes home excited to see us. I love that he is kind and sensitive but strong and protective.

I love Alivia. I love that she makes me laugh, that her kisses get my face all wet, that she furrows her brow and looks at me then laughs, that her face lights up with I come into view and that she has retained all of her joy after being through so much.

I love my parents. My mom because she is so much like me, because she's crazy (in a really good way), because she rearranges me house, because she cares so deeply for Alivia, James and I. My dad because he thinks of all the questions I don't come up with, he makes me laugh, because he loves my mom so passionately and still lets me borrow her for weeks at a time.

I love my brothers (real and in-law). Andrew and Aaron for the Super Tramp CD, the chic-fil-a cow, the top 10 funniest people list that Alivia made, for loving my girl so much, and for putting up with a crazy big sister for so long. Matt (and Viv cause they are a package deal now) for caring for Alivia. John for his thoughtfulness (he comes to my house and sees things that need to be done and does them without a second thought). Chris for mowing our grass (so helpful) and having a great beard that makes me laugh sometimes. William for being William (if you've meet him you understand) for all the deep talks and the silly talks. You are all her favorite uncles (although the race continues)

I love my in-laws. Bill and Cynthia for helping out so much, cleaning our house, doing James' laundry when we were in the hospital, and being there at the hospital each day that first week.

I love my extended family. Marmie, Lisa, The Mike's, the Pete's, Rob- you all have made me smile during this crazy time and reminded me why I will always be an Allen at heart.

I love Rachel. She is the friend I have had the longest so she's seen the most of me. From the horrible 16 yr old she didn't like in English class to the Maid of honor at my wedding. I gave Alivia Rachel her name for a reason. She is amazing.

I love April. We have been through the hardest situations two friends could ever go through together and we haven't even been friends that long (3 years). We have cried and laughed together more times that I can remember and she makes my life in Lancaster so much better. Without her friendship...Don't even want to think what I would do. (I love her twins too!)

I love Leslie Ann Yoder..For some reason I love to say her whole name too. She can make me laugh at the craziness. Always could. She was my very first friend in Lancaster and has proven herself one of the truest. (her fam kids and hubby also make me laugh on a regular basis!)

I love Jamie. She has helped organize my life when I can't even think.

I love Tina, Ang and Kathy for treating me the same as before this began. For calling to check up but not pushing for news. For just being great fun.

I love Beth A. for being the best little sister I never had but always wanted. I have watched you grow up (I babysat you!) and now you are one of my girlfriends. I love that you are Livi's fairy godmother.

I love our MD. friends. They all make my life more fun. You call my hubby and see how he's holding up and you've either come to visit or offered to and that means the world. I laugh with you guys harder than with anyone. Usually to the point of tears!

I love Bri. She is actually understand what it feels like to have a sick child and she has given me such good advice how to deal.

I love all of you for praying and for posting (nice to know who's reading along. I would love to have everyone who reads just post their name so I could see how many people are reading this).

Thanks everyone.

Sunday

We went to church...it went really well.
We came home...also went well.
She took 2 naps..both went well.
We took a walk and had some dinner...went well
She went to bed without even fussing.

So far so good. She had a wonderful day so we had a wonderful. My parents got home safely and James got back from the fishing trip that wasn't (the boat broke down)

After last night (no sleep till 1:30..baby screaming! she was woke up with gas and was so overtired by the time it passed that she didn't want to go to sleep. So we ended up on the front porch watching the rain at 12:30...actually a pretty sweet moment)I was expecting a terrible day. But it went great. God was so faithful today and now we are praying for a good night sleep too.

Thanks to Landon and Emerson Teeter for the teddy bear and video..we watched it an Alivia loved it. Also thanks for all the phone calls today (Gwen and Peter Young (cynthia's sister and brother-in-law), my aunt Maria, Rachel, Bill and Cynthia and my Parents (3 times. missing us already..but not as much as we miss them!)

Good night my friends

nothing much

Today was a layed back easy day. We (mom, dad, james, emily and alivia) hung out at our house all day and James left around 2:30 to go deep sea fishing with his guy friends. Not really any new developments...but if you think of it pray that she doesn't have gas pains. It seems like ever since her spleen got enlarged she is experiencing a lot more gas pains and they seem pretty bad. We are going to call the doctor monday and see if this is something he wants to check out or if it is something that can wait till Thursday. Pray that it goes away and we don't have to call. That would be nice.

It seems like we are getting back on our schedule. What a relief. My mom and dad are leaving tomorrow before lunch and I was very worried what the nights would be like without their help. James is such a sleeper that he can sleep right through the crying. And I don't want him to have to get up at night and then have to get up and work all day. At least I can get a nap in the day if she's up too much at night. I must admit I am nervous for my parents to leave. I haven't been alone with Alivia since we found out she was sick and I am second guessing my mom abilities. I am just so aware of how much she needs right now. She is so used to being held and hardly ever wants to be put down. Hopefully the further from the hospital stay we are the more she will return to herself....at least until treatment starts.

Thanks for today.
Cards from Dick and Barbara White (Bill's Dad's sister and husband)Gerald and Jean Garey (whom we've never met..so thoughtful), Jill P. (dad's coworker...again! Amazing) Denny and Marianne Harnish, The Moore family (from my parents church)The McKelvey family (parents church...New grandma and aunt..congratulations), the Cramer family (beautiful picture Emma...Alivia carried it around for a while), Our Marmie (Alivia's great grandma), Ang Stolzfus (loved the photo from the hospital...almost a smile)
And thanks to Lauren Lotinsky for the box-o-fun. The books are so cute and girlie and I love reading from Besides Still Waters( we borrowed a copy in the hospital and read it to each other at night). And a Starbucks card (there is a Starbucks in the lobby of the hospital so we can use it when we go for our next checkup)
I am, as always, amazed at the outpouring of love. Such a good time to feel surrounded by care.

ME

I still love to laugh, I still worry about my hair, I still love make-up (even though I stink at putting it on) I still try on 10 outfits before I decide on the same shirt as yesterday, I still hate to clean, I still love to cook, I am silly, I love spring and wish it would stay just like this forever, I still love James in rugby shorts, I still get annoyed at stupid, insignificant things the only difference is that I now know my baby is sick. So feel free to call me. Treat me like you always have. Livi's illness isn't contagious, it isnt' even obvious if you look at her. I will still turn off my phone if I'm taking a nap or don't want to talk. But I love to hear from people. I always have. I am a social girl. I love my friends deeply and I still need to hear about others lives. I don't want to always talk about leukemia or eosinaphils. I love hearing that Eden drank too much chocolate milk or that Samual can open doors (not sure if thats good) or that Jamie almost won the Newman family Easter Egg hunt (you'll get them next year). I can't stop my life and Alivia's just because she's sick. Instead I want to enjoy every moment and have fun. Especially if we don't have to be in the hospital. So don't feel like you have to walk on eggshells around us. If you want to call do. If I want to answer I will. Thanks for being sensative to us and wanting not to disturb us...but do. Disturb away because it won't be disturbing at all. Oh and when you see us Sunday at church say Hi. Just know that I may be spraying everyone with Anti-Bacterial wash of some sort or handing out HAZMAT suits. (Just kidding)

Night Time

Why are nights always scarier than days? Is it the dark? more tired? Why does every sound she makes seem amplified? The first few weeks she was home from the hospital (when she was born) I would wake up if her breathing changed at all. Now I am back there again. I finally turned the monitor off last night so that I could sleep more than 10 min at a time. I just want to watch her every second but that isn't realistic. I know that I have to trust that God will keep her safe and if something is going wrong I will know. It is so stressful. I keep waiting to get sick myself since my body is being stretched to unbelievable lengths. But so far I remain healthy. I would switch places with Alivia in a second. I would take this disease/disorder/syndrome from her and keep her safe if only that were an option. But its not. So instead I get to try to take care of her the best I can and fall on my knees and cry out for a miracle and not let my fears take over. Balancing act to say the least.

Thanks for today:
cards from Jim and Jean McClements (great grandparents of Alivia), the Snyder family, Rob Allen (great uncle of Alivia), Moriah Freeman and Beth Altrogge (fairy godmother)
Applebee's gift certificate from Josh and Natalie West (cousin of James and his wife) and a huge card, drawings and a framed verse from the Bowden family (aunt, uncle and cousins of James)
I continue to be so greatful for all the support. I have to go Alivia is crying.

Recap

Since this all started 13 days ago (only 13...I know it seems like a million years ago for us) I have received 425 comments on my blog (25% from Brianna and 25% from Leslie...Thanks for being so faithful to remind me that your there girls. I love all of your words). Some from friends, family, old teachers of mine, co-workers of my parents and strangers. Each one a little reminder that someone besides just us is coming before the throne on behalf of my little ladybug. I could not appreciate it more. Reading just bits of them had me close to tears...Not from sadness but from the relief I have felt knowing that my burden is shared by so many. This is by far the hardest thing I have ever been through. Just knowing that I can say what's in my head and someone will respond and understand makes my days a bit less overwhelming.

I started to go through and write down all the verses that people sent. It amazed me that most of them were not repeated. I thought I would list them for all of you. From Psalms 4:8 (x2), 5:1-3, 23, 27:13-15, 27:14, 32:8, 34:18, 36:5, 40:11, 56:3, 56:8, 73:26, 91 (x3), 113:3, 115:1-3, 121 and 139:5
Isaiah 26:3-4 (x3), 40:10-11 (x3), 43:1-5
1 Thes 5:16-18
2 Thes 1:11-12, 2:16, 2:13-17, 3:5, 3:16,
Ephesians 4 I Corinthians 1:25
Matthew 28:1-6, 8:3 Lamentations 3:22-24(x3)
Romans 5:2-5, 5:6-11, 8:26-27, 12:12 Philippians 4:6-7 (2)
2 Timothy 2:1 James 5:13-15 (x2)
John 15:7 Jeremiah 29:11
Hebrews 13:8 Proverbs 14:26-27
Revelations 5:8, 8:3-4

I didn't make it through all the messages so once I do I'll post anymore verses that I find. Each of these came at good times and helped me so much. Thank you for the poems, jokes, distractions, verses, funny stories, information,advice, and time you spent doing all of these. I am overwhelmed by the love and care I have felt. Thanks again.

Check-ups

We are home from our check-up (finally). It started with us leaving the house at 8 and we just got home at 2:15...But we're home and that's good. I didn't realize how disappointed I would be by today's visit. I thought that they would either admit us so we could start some kind of treatment or that her numbers would be so low that she would be healed. Instead neither happened. Her WBC's are back up to 120 but her Red BC and Platelets are both up too...Which would not be the case if her bone marrow was clogged with white cells. Another puzzle to add to the pile. So we get to stay home and have a visit again next Thursday to check her levels again (CBC-complete blood count). Between now and then we are to see if she is lethargic, has a fever over 100.5, doesn't eat, doesn't pee, doesn't poop, eyes make weird movements, one side of her face drooping, seems to be in pain and a bunch of other little tiny signs that I am now going to be crazy looking for. So we're supposed to live our lives, enjoy each day and look for any little sign of sickness...hard to do both. Wonder how to balance.

Last night was horrible. She just seemed to wake up every hour. It was nice to have my parents her so they could take some of the shifts. She would start to cry and all we had to do was pat her back or hold her hand and she would fall right back to sleep. Wonder if she was having bad dreams. And this AM's nap was nonexistent because we were at the hospital. Needless to say she crashed the second we got in the car to come home. Pray tonight will be better.

Pray that my dad has a safe trip home (my mom is staying and dad is coming back to get her this weekend...so thankful mom can stay. Don't' think I could do all this without them). Pray that he doesn't have to hard of a time being home...I know it was hard to leave during all this. Pray that there are no signs of sickness. And pray that we find some kind of juice that she will drink because we are supposed to keep her really hydrated and she doesn't like to drink anything unless its formula and she's really hungry.

I'm going to sleep while I have the chance.

Day Off

Well we took the day of from blogging today...sort of since I still checked for comments every once in a while.

I slept in my own bed, took a shower in my bathroom, went to the grocery store, organized and just enjoyed being "normal" for a day. It definelty was a rough night last night. I had huge expectations that we would come home and Livi would be so relieved to be in her own bed that she would sleep great. Not the case. Instead she slept worse than the night before in the hospital. Guess she's going to have to re-adjust too. She also didn't take a morning nap and cried whenever she thought she might have to get in bed. Thankfully tonight she went to bed easily. Guess I need to learn to not expect so much. I was, of course, the over protective mom all night and all day today. Its funny the protective bubble I felt in the hospital. I could be sure everything was clean and people were washing their hands (I became a bit crazy with that one). Funny how easily I put my trust in a place, or peoples words or a routine. I am learning (very very slowly obviously) that I need to trust God in all things. Not just the tough things...like sickness.

Regardless it was good to be home. Cynthia, Vivian and my mom cleaned my house for me! Not even something I could have thought of doing today but something that needed to be done. Such a huge help not to have to worry about it. My dad and I ran a bunch of errands including getting Easter pictures developed. I just love seeing her outside the hospital. And she looks so normal that you wouldn't even know anything was wrong if you didn't see the blood counts. Through this all that is what has been really hard for me. It almost seemed like she was fine and outwardly all that was wrong were the results of what we did to try to fix the problem. I know that what we did test wise was and is important. It just felt like we were making her sick. But if we can fix it in the long run its all worth it.

Thanks for today....
A clean house by Vivian Haughery, Cynthia Haughery and Mom. It probably never looked this great. Thanks
Balloons from the Knutsen family...she does love those balloons
Hat from the Boronow family (even on vacation they thought of Livi)
and a great card from Hannah Haughery (Alivia's almost 9 month of cousin)

Our appointment got moved to 9 AM tomorrow instead of 10. It will be good to get in and get all the labs done early. Hopefully that means we'll be home even earlier. I have to go pack a bag just in case though. I will write more tomorrow.

Home at last.

I can't even believe that we are in our home. It feels so surreal. I have been rushing around unpacking and doing laundry and just trying to adjust to the idea of being here. I want to hold it loosely since we could be re-admitted to the hospital on Wednesday and see this as a break and a gift, even if only for a moment. Regardless of whether this is for 2 days or forever we are amazed, stunned, joyful, and more thankful than we have ever been in our whole lives!

We had pizza to celebrate and are just trying to adjust. On Wednesday we will go to the outpatient clinic for a blood test. If the levels are still low or lower then she can come back home. If there is any kind of spike they will re-admit us. My mom, dad and Cynthia are all coming with me so that will be a huge help. They said that it will be a long day since we will get labs before our appointment and then have the appointment with the doctor. So we are going to pray that this is a miracle and that she is ok.

For those of you who understand medical speak I will write some of the main points from the discharge papers and if you want more e-mail me and I'll send it all to you. Admission Diagnosis: splenomegaly, r/o malignancy
Principal d/c Diagnosis: splenomegaly
WBC count upon admission was approx 190,000 and hemoglobin was quite low. Bone marrow aspiration showed 1% Blasts and increased eosinaphils (correct spelling finally)....Absence of the JAK2 Mutation and an absence of the BCR-ABL CML/All-type translocation (citogenetic test results). It was also felt that this was surely NOT any kind of acute leukemia. A certain diagnosis could not be made at this time, although it was felt that some type of malignancy and there was question of JMML or an eosinaphilic process. Over the hospital stay , the WBC count decreased to 60,000, but the splenomegaly remained a prominent feature. It was felt that by 4/17, although a diagnosis was not yet certain, nothing new was being done for Alivia's support in the hospital and that she was stable for discharge. She will be closely followed in clinic...

So they still don't know what we are dealing with. I am just so relieved for this time home. I can't wait to sleep in my own bed and wear different clothes (I only took 3 outfits to the hospital).

Thanks for today
Cards from the Millen Kids, Mary Ann and Joe Kisic (thanks for the personal experience story it was really helpful), Jill Piper, The Plesnickers, Scott and Ang Stolzfus, Lynn Bassler and Sandy and Ralph Jones (the gift was so great)

The purple Heff-a-lump from the Lovelands (Brandi K. you can tell Autumn that her prayer was answered and she got a purple elephant in the mail to play with..Thanks Heather, Chris and Cameron). The Panera gift card from The Newmans, the visit and Go Dog Go book and Dog from Jeremy, April, Lane and Ava Stolzfus. And the great painting from Joanne and Mike Allen (the other gift is more than we could even think to start thanking you for in a blog...We are so greatful and can't put into words how blessed we are).

Please continue to pray that God's glory will be displayed through a miracle. And that He will continue to give us the grace to get through this.

Also please continue to write notes to the nurses! They expressed how much it meant. You can send them to me and I'll drop them off when I am there. I thought of two more that I didn't name before (Winnie and Collette)I think that this is a great way to show them how important their job is and how much it means to not only us but those who love us.

We all feel like we've been on a roller coaster...not the end of the ride yet but a sort of break. We are exhausted (physically and emotionally) and just looking forward to a day of nothing tomorrow. Maybe a day at the park. Anything that will give us time to enjoy our God, each other and Alivia being home. Blessings and much thanks to all of you for continueing to walk through this with us. I will continue to post and hopefully continue to hear from all of you. It has been so wonderful to know that you are all praying for us so diligently.

UM....WHAT?!?

So we are sitting with my dad and brothers waiting for Alivia to wake up from a nap and my mom was with Alivia...well she comes dashing around the corner and says "we're going home!" You heard me...WE'RE GOING HOME!!!!!!!

I am in shock..but in a good way..yet again. The doctors decided that since they aren't doing anything to help and she is getting better (blood count wise) that they would send us home. We will come in for an outpatient blood count on Wednesday morning. The doc said that this could still develop into leukemia but the best case scenario is that she will continue to get better and we'll never know what it was. I think that would frustrate the doctors but we wouldn't' mind a bit. So we're packing our room and heading home.

I will write more about exactly what they said during discharge once I get home. Thank you for continuing to pray. They still think that this will become full blown leukemia but it hasn't yet. Pray that it never does. And thank you so much for all the prayers that you have said on our behalf. God is blessing us and healing our girl for us. Pray that it continues. God is so merciful

Monday #2

This is our second Monday in the hospital but this Monday is a lot easier to face since we are out of the PICU and she isn't intubated. It seems like so long ago that she was in there and yet sometimes it seems like just yesterday. God is gracious to make time go faster sometimes. I don't know how we would all hold up if the time was dragging by. Waiting for a diagnosis is really hard but we have had so many distractions sometimes I can almost forget why we are here. If you saw Alivia you wouldn't even know she was sick unless you saw the IV. Without all the doctors visit 2 fridays ago we would still be going along as if nothing were wrong. I know God was watching out for our girlie by letting us have that appointment. Otherwise she would have gotten really sick before we came in and they wouldn't have the luxury of taking the time to diagnos but would have to start throwing chemo at it just to save her life. This way they can find the exact chemo to give and then go from there.


Today they are scheduling the new bone marrow biopsy, lymph node biopsy and putting in the port. Alhtough the doctor we talked to this morning wasn't sure we should put in a port since we don't know what we're treating. I think they are all going to have to conference and figure out the next step. As long as she is doing okay they can take all the time they need. I'm here for the long hall. I want them to do the best thing they can so that she can get better.

Last night I forgot a thank you to the Newman's for the Panera gift card (so nice to eat outside the hospital) and for recording 24 for my dad...didn't realize thats why you were recording it did you?! Last week we had planned all day to watch it and then the doctor came in to talk to us right as it started and left 5 mins before it ended. It was the only time we had a discussion with the doctor all day and we had a good laugh about the timing. Here was our only planned distraction for that day and we missed it. But thats okay. Now we'll get to watch 2 episodes back to back. SO by we I mean...Dad, Mom and James. I will be sitting out. But I am so glad for a break for anyone in the family.

I thought of two more nurses names...Winnie and Colette. The Millens already brought in brownies and the nurses have commented on how nice it is that they are getting presents from our room. Thanks. I want them to feel as blessed as we do.

I also want to extend a thanks to Aaron's professors (Dr. Helterbran, Dr. Silvis, Dr. Nicholson, Dr. Kupetz and Dr. Wang) and Andrew's professors for understanding and supporting their time away. It has made it a little easier for our family knowing that they have your support. It has been so nice having them here to help entertain and distract Alivia. They will be back this week and working hard to catch up.

Easter Sunday

We had our break from the hospital and it went well. It was nice to be with everyone and so nice to be in the Booker's home (THANKS A TON). Cynthia made a great meal and we all had fun quizzing each other and just laughing in general. We also got some great pictures of the cousins playing in the yard. It was so nice to be out and about. We also had a bit of time when we came back that she didn't have to be hooked up to the IV so we went down to the play room and let her cruise around. She has been doing that with the IV but its so much easier without.

Tomorrow the medical drama begins again...or does it. They have to discuss when they can fit in her surgery. She will be having a "port" installed. That is a line that can stay in for about a year and is a direct line to a vein so that they can always get a blood draw or medicine in without sticking her a bunch of times. There are two types...one that has 2 tubes that come out of the skin and are always visable and another that is a small disc under the skin that isn't visable and is less likely to get infected. I think that the under the skin kind would be easier for her since she's so little and unable to understand that she can't pull on the tubes. But they have to see what the surgeons can do. While she is sedated they will also do another bone marrow aspiration/biopsy and possible a lymph node biopsy although they aren't sure if they will be big enough to get out or is it will be really hard to get one. They are doing all this to test again for the different kinds of leukemia they already ruled out. just covering all the bases. I am fine with the covering of the bases but also shocked at the ease with which I now discussing cutting my baby. 9 days ago I would have had heart palapitations if you mentioned Alivia and surgery in the same sentence. Now I find myself nodding along and agree to it. Its the best thing for her just such shift in our lives (obviously).

Pray that the white blood cell count continues to drop (69 thousand today...lowest count yet). that her organs remain great, that her spleen shrinks, an average persons is the size of their fist (imagine a baby fist) and hers goes from her ribs to below her diaper line. It is also extremely hard. They say it is packed with white cells. Pray for a positive diagnosis and that she won't suffer through harsh treatments.

Thanks for today.....
The Bookers for all the generosity they have showed us and our families (Cory talk to Bill about the food....)
The Millens for coming to visit and bring such a cute book for Alivia
The Kings for the goody bag (alivia loves opening gifts so much we just keep putting everything back in for her to open again and again.)
The Almengores for the cute picture, the great balloon (Livi points and laughes), the basket-o-fun and the heartfelt words. Bri you are so thoughtful.
the Cranmers for the books. They are so fun.
Cynthia for the Hedgehog and the yummy lunch
Uncle Andrew and Uncle Aaron for the easter basket
Mom and Dad for everything....but today for the singing frog.
Cards from Jim and Jean McClements and Karlyn Sentz
And the Hospital for the Easter Basket and Easter Pass. We feel so blessed that this is the hospital God has us in. We are taken care of in so many ways. Truly a blessing we didn't expect.

If you would like to collect the tabs from cans of soda and bring them or send them to us they collect them and get money for the children's hospital activites and the Ronald McDonald room stuff. They got over 12 thousand dollars to help support the families of children in the hospital last year. Just another way we are being blessed by the hospital.

Saturday Night

We are getting a pass for the afternoon tomorrow. I am so excited and a bit nervous. We have to be really careful of germs and how do I do that outside the hospital. Never thought I would be nervous to LEAVE this place. We will be back here later tomorrow afternoon.

Today was a nice day. We spent some time laughing and enjoying our girl. She is getting more and more personality and is busy making us all laugh and being oblivious to her illness. She is still terrified of any and all medical staff. All someone has to do is walk in the room and she starts to cry. But there have been a few times that she actually stopped crying during a vitals check so that is progress of some sort. We barely had to interact with the medical staff today. They have weaned her down to one antibiotic and she is down to 10ml an hour from 50 originally. She even took 3 naps today. all shorter than at home but we are getting closer to a normal schedule.

The nurses here are so amazing. We have been blessed. We would love to have people write them very breif thank you notes and sign them friends of Alivia Haughery. If you want to do that you can send them to us and we'll get them to the nurses. We also have a list of some of the names of our nurses in case you want to include them (Karli, Emily, Natalie, Michelle, Erin, Amanda, Katie, Tom, Ed, Barbara, Amanda (different one), Melanie) That way you can address a specific nurse or all of them. Also if anyone wants to make cookies or some sort of treats for them that would be great too. Thanks. God has just used them to bless us so much. They are always coming to see if they can get anything for us or do anything. And we noticed that you never pass one of them in the hall without getting a smile. Just a bright spot in our day.

Her vitals have remained perfect. Continue to pray that they don't change. Her white blood cells are back to 75 thousand. And she is her happy self. Thank you for your continued prayers.

Thanks for today...
William for putting the pictures on blog for me. I am so computer illiterate it's a wonder I can figure out how to blog...oh yea I started this blog 3 times before I really figured it out.
Cards from Mike and Destiny, The Knutsens, Jill P. (from my dad's work), Scott and Bev, Benjamin Kim (Livi doesn't know how to react to cute boys yet either thats why she always cries!), Fairy Godmother Beth and Milt and Ann Eckman. She opens them herself and then tries to chew on them. A very fun distraction for a bit.
My mom for being a little rug for our room so Alivia can play on the floor. And for all the other amazing things she has done for me this last week. I could never do this without my mom. I will write more about her later...right now I might start crying if I start.
Andrew and Aaron for the stuffed frog. Her stuffed animal collection is so great.
Kirk, Holly and Ryan for the lamb and balloon. She loves balloons and just laughs when she sees it.
Cory for making an amazing dinner for my husband, dad and brothers. They have been raving about it. You must give me the recipe. And for letting us use your house for Easter dinner tomorrow

Happy Easter everyone. We will be enjoying the afternoon at the Bookers. We'll try to post a picture of the Easter dress. We thank God for you all every night (not by each name because that would take a really long time and we have to sleep sometime.)

Pictures

If the pictures don't work just refresh the page.



Alivia loves the slurpies at the Hospital...but the lid is even more fun!


Pap-Pap and Livi showing their flaunting their Panther Pride to the Nittany Lion


Daddy and Baby...cute face.


Alivia thinks she owns this car and will be very sad if we can't take it home. Do you think it will fit in our suitcase?

Weekends

Weekends are much slower and less busy in hospitals. The elevators don't stop on every floor when you are trying to go somewhere. As residents of the 7th floor is has taken us a long time to get up and down during the week.

The extended fam left around 11 and my brothers will be hanging out for the weekend. We got sleep last night. She is starting to get used to all the interruptions (don't know if I want her to get used to it because that means we will be her a while). We won't have any huge tests till at least Monday and this weekend is just maintenance for her. As long as nothing goes wrong. So we are just sort of hanging out. They might even give us a pass to go out to lunch tomorrow. That would be so nice.

Have a great weekend everyone. I will still be writing but probably only once or twice. Happy Easter also.

A note from DeDaddy (Bill H.)

Dear Alivia, - A week ago none of us would have guessed that we would all bebrought together under these circumstances. In God's wise providence you arein the hospital and we are praying that He would heal you. You have broughttogether so many dear friends and family and focused our hearts on the onesource of true hope. "... and a little child shall lead them." Is. 11:6 Iwish you could see the faith and courage of you daddy and mommy! They areliving an "example of faith" for you to follow one day. It is anencouragement to us all. Love, Dedaddy.

I have been reading the responses that many of you have been so kind as topost. It is simply an overwhelming expression of kindness and consideration.It buoys our spirits. Thank you Allen clan, Jim and Jean, Paul & Cheryl, Jon& Marcy, Craig & Anne, our dear friends at Crossway Church, LOLC, PastorsCollege (Weavers, Mellingers, Sheffers), Covenant Life family, Walkers, andso many close friends. Your words carry life and faith to our hearts. Blessyou all.

Friday Night

It feels like it was much more than a week ago that this whole thing started but last week at this time we were home on the couch watching a movie trying not to think about the next days blood test.

Today was an extremely busy day but not eventful news wise. My extended family arrived around 11...I think (my concept of time is completely off). My parents took care of Livi so I could take a nap this Am and so I was really unsure of the time all day. Marmie, Lisa, Pete and Maria were all very excited to see Alivia (what are we chopped liver...Just kidding) and they brought Alivia and I such sweet gifts. She loves getting presents. We said when we get to go home she is going to wonder where her gifts and mail are. Vic and April came to visit and also brought gifts... We are getting so spoiled. I can't tell you how much I love the company that each new person brings. Days fly by when there are people you love to care some of the burden. The my brothers sauntered in during lunch. I haven't seen Andrew since Christmas and I can say that it is good to all be together (even if the circumstances aren't good). The before dinner my sweet Rachel came (even though she got her wisdom teeth out 2 days ago...Very brave and wonderful). Then Bill and Cynthia arrived (they have been here each day this week and it means so much) and around 7:30 James came with John Chris and Will. We had a full house. I think Alivia is the most popular girl in this hospital. Or at least the most loved.

She had a great day. All vitals remained the same. Her chest X-ray showed everything is great there also. They were able to wean her off of one of the two antibiotics that she is on and lower her fluid to 20ml an hour instead of 50...Hopefully she won't soak her bed like she did twice last night.

The doctor came in with positive news. All the citogenetic tests from the Mayo Clinic came back negative. So that rules out most of the leukemias. One thing that he called a red herring was the fact that her Mono tests came back high and above average. He knows it is not mono but this info doesn't fit with anything they have. They still don't' know what she has. They are leaning towards a Syndrome that I can't spell right now because I am too tired. But it is something that isn't' seen in children. Dr's who treat it have never seen it in a child before. What this means for recovery and prognosis I don't' know. We will be in the hospital at least till late next week if not longer.

Please pray that all of her organ remain "Perfect". With a high white count like she has (the type that are high is called eocinaphils (phonetic spelling obviously) usually help fight germs (as much as I understand) and she has so many and there aren't any infections to fight off so they could start attacking her organs. If that happens they will be under the gun and have to start giving her drugs that they aren't sure of the side affects (since they haven't ever used them on a baby before). Also pray that our doctor will learn a lot this weekend but also get a lot of rest. He has some time off and said he would be reading up on the syndrome she possibly has. Also that there would be wisdom for the doctors whether or not to put in a port early next week. Her central line can only be in for 1 to 2 weeks or it will be infected and so they have to decide whether to put in a port (surgery) or stick her each time they need blood. Also if they go to put in the port they will do another bone marrow and a lymph node biopsy to see if that could more specifically diagnose anything. Also pray for strength for us. This have been a long long week and it is still going to be a long road.

Okay thanks for today
the Pete's for driving everyone to Hershey, bringing goodies, cards and smiles
Lisa for the dollar store finds that made our room so cute and made Livi smile
Marmie for being the sweetest grandma/great grandma anyone could wish for and for the card and gift that will be so helpful
My cousin Sarah for the pretty card, comfy clothes and good smelly lotion. and for the blanket you are making. Livi can wrap herself up in your love that way
Rachel for years and years and years of putting up with me. For driving her with a swollen mouth and still being so easy to talk to. and for the gifts that you thought to wrap individually so Alivia would have more to open. She loved it.
Vic and April for coming to visit, the super cute pic of the twins (who I can't wait to see when we come home)....the late night phone calls which keep me sane. April...I don't have another friend who I have gone through more with.
Cards from so many people and I will thank you all tomorrow but tonight my mind is starting to fail me.
I forgot to mention yesterday Thanks to Irene and Grace for coming to visit and bring magazines to read. Both Grace and Pete have come at moments of chaos and just been so sweet and caring. Thanks to all who are praying. We couldnt' get through this without all the words of encouragement.

Thanks most of all to my Heavenly Father who is leading my through this and holding me together when I have no strength to continue. And for knowing every single cell in Alivia's body and not being suprise by any of them.

another Day

Last night went much better than the night before. We were up for about an hour and she woke up when the respirtory thearipist came in but then she slept till 6:30. She is doing great. Still no outward signs. We are just hanging around waiting for the doctor. My extended family (some of them) arrived a bit ago and so the room is packed to the gills with people. My brother Andrew is stuck in D.C. (layover) and he called to say that they were waiting for the pilots to sober up. (haha) I need a bit of Andrew humor. Can't wait to see my brothers.

We should hear something today. But then they thought we would hear something Monday. So pray for a positive diagnosis (as I know you have been) or even better pray for a miracle.

Fun fact

I was running a spell check on one of the post (because I am not friends with spelling) and everytime Alivia's name came up it asked if I wanted to replace it with the word alive. And whenever it comes across the word Livi it asks to replace it with live. Both words I love to hear when I think about Alivia. Just another tiny encouragement for me.

A note from Pap-Pap (Dr. Dave)

I am sorry this note is long overdue. My words are going to be sorely inadequate but the tears of appreciation and gratefulness welling in my eyes say it all. As Alivia's Grandpa (Pap-Pap) and Emily's father I simply want to say thank you for all your prayers and words of support, love and encouragement. They have meant far more than you can ever imagine. I hope to personally thank all of you and convey the significance of your expressions of love and concern. We are minute by minute strengthened by God's love and mercy for us and especially towards our little sweetheart. Please continue to pray for a total healing of Alivia. Mostly pray that throughout this all God would be glorified.

A note from Gigi (Grandma Gretchen)

We actually got to put Livi in her "car" today, remove the i.v.'s and take a twenty minute walk outside. It was very therapeutic for the adults. Having BIll and Cynthia here today was "side by side"...walking through this with them is so helpful. Pleaase pray for Livi to sleep tonight, she is exhausted...but every medical worker and/or the sight of a stethoscope freaks her out. No sleep means less coping ability for all of us.The extended Allen's are coming tomorrow...So good to see them all.Andrew flying in from Georgia, Aaron is picking him at Pitts. Airport and is bringing him here. The Pete's are coming and bringing Marmie (Dave's 80 year old mother who just got out of the hospital due to the stress of all this) who insists her 85 year old doctor told her: "Mrs. Allen you have to go!"
It will be good to talk and get some stories from others...we have all begun to just share what happened in the Ronald McDonald room, how the tiny little patients are doing. The Byler boy has had a hard time being weaned from the respirator, Ryan a 3 year old having his third heart operation has pleural effusion...His father actually works for Hershey Medical Center as a fund-raiser. He said, "why, wouldn't I want to work for the hospital that has saved my son's life?" I had started to look at the heart patient's as the "lucky ones"...they look so pitifully at you when you tell them that possible diagnosis is some virulent form of leukemia. People even look at Livi's little port (underneath her clavicle) and inquire; "Is she on chemo?" "My sister has leukemia and is sick as a dog." Not helpful...But it almost becomes our humor. Hmmm, leukemia "humor?" This was not my life last week, and I never wanted it to be my life. However, both Dave and I want more passion for Christ, and He has answered that prayer in no short order. We are desperate for him. And He is here, I feel him and you find yourself talking to other parents about God's goodness. I have no strength but his, I live each day for itself...I cannot allow myself to think further. I am sorry this is so long...Suggestions to cut it short are being received. Thank you for anyone and everyone who has even given us a thought. We LOVE YOU ALL. Gig (P.S. Forgive me if I am somewhat giddy...we need to go to bed ....)

Daily wrap up.

Every time I see the Dr. in the hall I get nervous. I feel like I might get sick. Those are moments that I need to remember to pray hard and not let my thoughts take over but instead turn to the Lord. I can so quickly become faithless and start relying totally on the words of man and not God. Today I had no reason to be nervous. There was no new news. Instead still no results but now they are leaning towards a "syndrome". He said that if that is the diagnosis that it will be through a process of illiminating all other options. He even mentioned possible sending us home since they aren't doing anything treatment wise right now. I can hardly believe my ears. I am trying to just remain steady and not get too excited. It would still mean chemo but a watered down version. Can you even believe it? So now we are hoping that all the genetic tests come back negative tomorrow. We will at least be here till Sunday and maybe longer if the tests come back positive but today ended up again. God is doing a mighty work.

Here are my thanks for today....
the super cute Rabbit and card from the East Pike Administration office (my dad is so touched by his co-workers love), the box of fun from Shannon (Livi had a good time empting and re-filling the box), the talking cell phone toy, light up flowers and other goodies form Leslie (my favorite part of it all was seeing your face), a great dinner and visit with Keith and Tracy Felizzi (our care group has cared for us so well) Cards from Jim and Jean McClements, Chris and Stephanie Freeman, Randy and Jerelene Wolfe, The Mike's, Joni C. and 2 of her favorites uncles Andrew(who is flying to see us tomorrow) and Aaron (Super Tramp almost got a smile during a vitals check) We can't wait to see all of our family tomorrow. We have hung up every card that is sent, loved every gift, read every post and just felt loved from every direction.

Continue to pray that all of her organs are functioning normally (the doctor says he is amazed they are so great right now....they could be all doing horribly but are as normal as they can be...some are just a little larger than normal.) Pray that the rest of the tests come back negative and that she will only need the watered down chemo. And pray that we get to go home.

This week has been a rollercoaster and I have learned so much about all of my lack of faith. I am very weak and so quick to question and doubt. God has blessed me with all of you who constantly remind me to place all of my hopes in the Lord and not in the words of man. Keep it up. Good Night

Another Blessing

We found at that we don't have to have another bone marrow biopsy today. Our doctor decided that he didn't think it would be conclusive and so would just be another thing to put her through (and us). Also each time they do it there is a risk of infection and she doesn't need that. So we took her for a long walk in the little sports car/stroller they have. I will try to post a picture of it soon. I need to get William to help me. We are now going for a bottle...she is starving.

This AM

We found out late last night that Alivia is going to have another bone marrow biopsy this morning. So she is not allowed to eat for at least 4 hours. She had a terrible night sleep wise last night. She woke up anytime someone walked by the room it seemed. So now she is really really tired, really really hungry and is going for another biopsy at some point. Not the best start to a day. Pray that she will be able to calm down and rest at least a little before the biopsy. She just can't seem to fall asleep. They haven't been able to take vitals this morning either since she is so upset.

I would like to mention that we would appreciate that no one come visit on Friday of this week. We are going to have our families around and we would like to have the day with just them. (Rachel you count as family so disregard this message and come see me) Saturday will be a bit less busy and Sunday too (even though its Easter). So either of those days would work better for us. We do love the company and anytime someone mentions they are coming I get so excited and start looking forward to it.

So prayer requests for this morning....smooth biopsy (She won't be fully sedated more like when the dentist removes a tooth...concious sedation...so my mom is going to go with her till she falls asleep), easy dressing change (for the dressing around the central line) Great diagnosis, some rest for me (didn't sleep much last night) and strength all around. Thanks

On a good note the white blood cells went back down to 90....thanks for praying it is working. Keep at it. We want them to continue to drop!

one more thanks

I realized that I forgot to thank Pete Privatera for coming. he has been here twice and both times was in times of huge movement, upheaval and stress. But it means so much that you came Pete. Thanks for praying with us and directing our eyes to the Father.

Sum up

Today has been a faith building day from beginning to end. I think we all needed a day like today. it started with her sitting up when I came to see her first thing, to getting all the tubes (except the central line) taken off, to giving her a bottle, to getting a new room when we hated the first room, to talking to the doctor. Yea he had almost good news. Not a definetly but they are 2 steps closer to ruling out the worst kind (JMML). They did two more tests that made us one step closer to ruling it out. Not completely out yet but still, we'll take anything at this point. the rushed a blood sample off to the University of Alabama and the University of California were the lead doctors on JMML are located. They will run one more test and if that is negative then it will be ruled out completely. We also ruled out CML pretty completely. All preliminary tests came back negative for CML. So we are down to the rarest ones on the list. And they are back to testing for parasites again. they said it was off the list but now its back.....who knows. We would be so happy to rule out JMML completely but that test takes a few weeks. Regardless God has been so gracious and kind to us today. We are overwhelmed (in a good way). We serve a powerful, merciful God...I may have to come back and read this post when the chemo starts. But I pray I will be able to continue to trust in Him.

Our only low note was that Livi's white blood cell count went back up to 120 today. We came to the hospital at almost 200 and got down quickly to 71. But today it started to go up again. It would be wonderful if it would come down again. the higher it gets the closer we get to forisis (spelling). So pray that it stays the same or even better comes down. The needle that they would have to use for forisis is much bigger than the needle that her body could handle so it would be really bad. and she would probably have to be intubated again. Not what we want. If you are praying that is a huge request. And the test results are another.

All of your words build us up so much. James is sitting at the computer beside me reading all the posts from the last few days. He thanks you all too.

Here are some more thanks for the day... Dinner was great Ang thanks! We all were in such a good mood too that we all ate the most we've eaten in days. It will surely give us extra strength for the days to come. Thanks for visiting Ang, Dwayne and Tina, Anya, Bill and Cynthia, William, Jeremy Landis, Caleb Lewis, Andy and Sonya, Jess, Bev, and Amy K. thanks for the mags, HAND LOTION!!! and cookies (Jess), the daily verses (Bev), the flip-flops (Anya) and the basket of goodies, book and puzzle (everyone has gotten a good laugh from the sound a guinea pig) (Amy)

Another huge blessing we are slowly learning about is called the 4 diamond fund. If Livi is diagnosed with leukemia then it kicks in instantly without us applying or anything. It will pay for all medical bills that insurance doesn't cover, it gives us meal vouchers, gas cards and phone cards. We got our first phone card today. We just feel like we are in the best place possible for us. What a blessing to have this hospital so close to home.

room assignment 2

Here I am groaning in my heart about my room assignment and my ever faithful Father is working it out without me doing anything. My first response is complaining and He still answers my unasked prayers. I am humbled by His love. If he loves me in these little moments how much more he will love me in the big moments. What a worm am I.

We are going to be moving across the hall to 7264...the room right next to our old room. It has the view of the trees that I was hoping for. and it has a glider rocker. Thank God.

Room Assignment

We have a room.....7261. So the address is the same as before. Just a different room number is different. Also we have a new phone number (717) 531-4861. unless it is an emergency I would rather people call my cell phone. thanks.

I will say that I am struggling with the room placement. I pretty much hate its location. We also don't have a chair that rocks! when you have a baby that is pretty much the most important thing to have. So I am praying that we at least get a chair. I might even ask that we get another room if one opens up. Just pray that I settle in and can be content where we are. It would be nice to at least like the room. Another thing to wrestle with.

Mid-day update

So far today has just gone great. She is now off of all the machines. Just her central line remains. No monitors either. Her oxygen saturation on room air is between 98 and 100 percent. So no oxygen needed. i got to give her her first bottle in 2 days and she gulped it down (great sign) So for now at least we know that she isn't feeling sick.

Pray for good news from her oncologist today. There is one kind that she could have that you just take a drug by mouth and go home. CRAZY!! I don't want to get my hopes up since it isn't the most likely. But miracles are possible. She is a miracle to us.

For those who dont' know our story, we had a hard time getting pregnant and finally went to a specialist. We had a miscarriage early and couldnt' concieve for a year after that. We went to a Dr and got pregnant the first month. Most of the time it takes longer than that. So Alivia has been a miracle from the beginning.

I have a few things that I would really use. I am going to list them and then if you are coming to visit and want to bring one of them that would be great. Just call Jamie Sentz (413-2537) if you are bringing it so I dont' end up with 10 of each things.

-pink and blue pair of flip-flops from Old Navy (2 for $5) for the shower (size 8)
-shampoo and conditioner (Aussie brand) Walmart has big bottles for a good price
-Chapstick (blistex medicated...comes in a litte blue tub) I lost mine one a walk yesterday.

here are my thanks so far for the day. We got mail and it was so great. (Marmie, Lisa, Yoders, Moores, Matt and Viv...thanks for the pictures Eden and Nicholas, Kathy Booker) Bill and cynthia for bring lunch AGAIN and dinner last night was great thanks james and Pauline.
continued thanks to jamie for being my organizer. And to April, Leslie and Rachel for listening to me rant on the phone. Also thanks to Bev and Jess for stopping by. Anyone who comments on the blog...I read them all over and over. I have felt so loved these last few days! God is using you all mightily in my life.

Little blessings

Livi is alert and playing with toys. a little like herself. I love every little glimpse of my girl. She is so sweet. All the nurses are raving about how sweet and cute she is...I, of course, agree 100%. She is going to have the cathader removed and then she will get to eat! Mommy duties are coming around....so far a very good morning.

morning suprise

last night was pretty hard. I went to bed completely discouraged with a not of fear in my stomach and this morning I woke up scared. I went to see her at 6:30 and she was sitting up in her bed. I couldn't even believe it!! If she wasn't in the hospital you wouldn't know she was sick. That, to me, is everything. I don't want her to suffer during this...or suffer as little as possible but still get better. So I gave her a sponge bath, rocker her in the rocking chair and watched her favorite show on TV.

Right now my mom is sitting in the rocking chair holding her and just enjoying the moment. Praise God for the little joys.

Still no diagnosis

So now we know that news can also be a bad thing. We don't have an absolute diagnosis but now we have ruled out the two most common kinds (ALL and AML) and they are leaning towards the hardest kind. Some words that were said during the meeting with the doctor included never seen before in a child, chronic, wonder drug, chemo, no chemo, in the hospital for 6 months, home soon, intense and incurable. I completely don't know what to think.

I am scared, confused, numb, sick to my stomach, lost, terrified and drained. It feels like our best options have been eliminated and the only thing left is really scary. We are so desperate for a miracle. I am crying out constantly for her to be spared and I am at the end of my rope. Pray hard.

addicted

Is it possible to be addicted to your own blog? Cause I think I might be addicted to mine. It is my one and only link to the outside world. I know that i can share with a large number of people and also I love reading all the comments. I have gotten comments from people I have never meet, friends of friends, mothers, sisters and brothers of friends. every message is a great. it reminds me that we arent' alone here on the 7th floor.

My favorite story so far was from Kristy Altrogge (my parents great friend, my great friend, mother of Beth...my favorite almost sister) who went out with her mother and when they got home and there was a message on the machine that asked people to pray for Dr. Allen's granddaughter. Kristy's mom doesn't even know us. Its nice to know people everywhere are praying for us. Thank you so much.

Extubation

Livi was extubated around 4 today. It is nice to see her face without the tubes coming out of it. I miss that little mouth. she gives the best kisses. the extubation went well and she is coming out of the sedation pretty well. her breathing is pretty fast still but that can happen when you've been on a breathing tube. i guess your throat is all dried out. so it takes a bit to regulate.

we still dont' have a diagnosis. all we do know is that it is not a parasite or a virus (darn!) and that it is going to be some kind of very rare leukemia. the doctor hasn't come to see us but they did have a conference of doctors about her this morning. they are still waiting for some of the genetic tests to get back from the Mayo clinic. being rare doesn't mean it is harder to treat or that it is easier to treat. until they know the exact type they can't say...well they can't say anything really. so there was some activity today but mostly waiting around a lot.

thanks to cynthia and bill for cleaning our house and doing some laundry. that relieves my wifes heart to know that my hubby will have a clean house and clothes. (yet another thing out of my countrol) Also thanks to anyone who has volunteered to donate blood. if you are going to you can go to the blood bank in this hospital and donate and tell them that if it matches you would like it to be for Alivia. Even if it doesn't match it will go to someone who really needs it.

thanks to pauline (and family) for making us dinner. its not here yet but it is so nice to get home cooked meals. and thanks to jamie and lyndon for bring it to us.

i'm going to just say a brief thanks a the end of each day to all the people that come visit. it is a bright spot in our day. so thanks bill, cynthia, john, tina lapp, jamie and lyndon sentz, sue minich and beegee herr (forgive spelling errors).

transfusion

we are going to be having our first (But probably not last) blood transfusion soon. thats the first thing i actually knew what the word ment without explination. I realize i'm going to be come a crazy lady trying to get everyone to donate blood when they come to visit. if it matches her blood type it will be reserved for her, if it doesn't it might save someone elses life. i have never been a blood donater (expect once in high school and that was just to get out of class) and i never truly understood the importance. I always assumed someone else would do it. But it everyone thinks that they there will be no blood to help out. So if I get on your case don't take it personal. I am a mom with no jobs to do right now and need to do anything i can to help my baby.

I always want to explain to anyone that comes to visit some things. This is more for my own good than yours. Its also something that you probably assume. I am very much a fixer. I like to take care of others and make sure everyone else is okay. But right now i can't do that. I end up feeling pretty guilty that I didn't spend enough time with people when they come to visit. I love visitors. They make the day go faster. But know ahead of time that I might not be social. (I know you understand....i'm saying this for me so i'm not constantly apologizing when people are here) I might not even talk at all. But i love the company and it means the world to see a familiar face come out of the elevator. so come visit but don't have any expectations. Thanks

transfusion

we are going to be having our first (But probably not last) blood transfusion soon. thats the first thing i actually knew what the word ment without explination. I realize i'm going to be come a crazy lady trying to get everyone to donate blood when they come to visit. if it matches her blood type it will be reserved for her, if it doesn't it might save someone elses life. i have never been a blood donater (expect once in high school and that was just to get out of class) and i never truly understood the importance. I always assumed someone else would do it. But it everyone thinks that they there will be no blood to help out. So if I get on your case don't take it personal. I am a mom with no jobs to do right now and need to do anything i can to help my baby.

I always want to explain to anyone that comes to visit some things. This is more for my own good than yours. Its also something that you probably assume. I am very much a fixer. I like to take care of others and make sure everyone else is okay. But right now i can't do that. I end up feeling pretty guilty that I didn't spend enough time with people when they come to visit. I love visitors. They make the day go faster. But know ahead of time that I might not be social. (I know you understand....i'm saying this for me so i'm not constantly apologizing when people are here) I might not even talk at all. But i love the company and it means the world to see a familiar face come out of the elevator. so come visit but don't have any expectations. Thanks

News?!

Sometimes they say no news is good news. I would have to say I don't agree. No news drives you insane slowly but surely. We waited all day and finally the doctor came to talk around 9:30 and said that they still dont' know what it is. Not only that but they are going to have the infectious disease team come and evaluate her tomorrow because it might be a crazy parasite that they haven't found yet. Its after 10 and she is getting a CAT scan right now. They are just doing whatever they can.

Our Oncologist thinks it is some really early form of leukimia that he named but of course I can't recall right now. It would be a really really rare form (Not what we want) I keep saying I don't want any syndromes or diseases named after my daughter. I don't want to be the first to discover anything. I want to have something they can treat, that they are familiar with and that is easy.

They did say that their is a 90% chance it is not the easiest kind of leukemia (A.L.L.) so that is hard. Now we are wanting it to be A.M.L. if it is leukemia. The best option would be a parasite. That would be easier to treat(they think) and wouldn't need chemo. The other kind (J.M.M.L.) requires a bone marrow transplant and it is dissappointing to know that we wouldn't be a match. That is very hard to swallow. So if it is that kind everyone will have to get tested. But don't rush out and do it unless you are willing to donate to anyone. No need to do any unneeded tests.

On a positive note they are planning to extubate her tomorrow morning (which means next thursday in hospital time...haha) Other good news I still seem to find some things funny.

The extubation is going to be rough cause they have to bring her out of sedation and she hates it. She gets so scared and starts to fight the tube. We probably won't be in the room for it but after we will get to hold her. I can't wait to give her a big hug and kisses all over. In my eyes she is still perfect and has the cutest toes I have ever seen (One of the things I was marveling in today) She is getting a lot of love and that is wonderful. Keep praying maybe all of this is just God doing a miracle and healing her as we watch. That would be great. Then she would be in a scientific journal for a good reason....that would be the kind of reason we would be happy about.

Good Night

hospital time

i'm learning that hospital time has nothing to do with real time. we were to have the biospy at 10:30 and it didnt' happen till noon and we were to get results 3-4 hours after the biopsy and here it is 7:30 and we haven't heard a word. Pretty frustrating and a bit scary. I know that they are trying to diagnos it an I want them to do the best they can to figure it out. I just want a plan. I need patience.....big time.

I am getting all twitchy and I'm talking for no reason. I just gab on and on and I'm also a bit giddy. But everyone is being very understanding...thanks mom and dad. if we get a diagnosis soon I will post it.

Bone Marrow

In 10% of biopsy's the bone marrow is just to packed with cells to get a good sample and that is what is going on with Alivia. so they got a sample but aren't sure it will be enough for a diagnosis. Pray hard that it is. There aren't many options other than to try again and again to get the bone marrow. That is the only way to get a clear diagnosis. The only way to thin the marrow is chemo which and they only way to give the right chemo is to get a clear diagnosis. (vicious cycle) So it has to be enough. That is all there is to it. Our doctor tried and even called another doctor in to try.

Poor poor poor baby

contact

just wanted to let everyone know that it is okay to call my cell phone any time. I won't always have it on because you can't have them on in the PICU. my number is (717) 823-2967. And you can also call Jamie Sentz for info (717)413-2537. we would just ask that you not call James during the day. His biggest resposiblity right now is to keep the business going and just go to work each day. And in order to do that he can't have the constant task of explaining what is going on with Alivia. Its just too hard. She is already on his mind constantly and that just makes it harder having to talk about it too. So please serve us in this way. Thanks.

Also we love visitors. Any time.... as many as possible. Its just nice to have people around and even have little distractions. We need to laugh still or we'll go crazy. So if you can visit do. Day times are the longest and will probably be hard since thats when most of the test are and will probably be when visitors are the nicest. But evenings are good too. the only reason you shouldn't come is if you or someone is your house has been sick. Most of the kids on this floor can't tolerate germs. Alivia can so far but may be to that point. Know that if you do come you may not get to see Alivia base on what tests she is having or what procedures she is going through. But just knowing that you were here will mean the world to us.

Thanks again for all the love and support. It means the world.

special thanks to Jamie (for all the hard work you are doing) Cory (for explaining so much to us and making james feel like he understands a little more) and all the people who have come to visit already. Thank you thank you thank you

pictures

i am trying to wrestle with the idea of sending out the most recent pictures of Alivia. she is in the PICU (pediatric intensive care unit). And the pictures aren't pretty...they are very very hard to look at. She doesn't look like herself but it is good to know that she feels no pain and that she will not remember any of this.

I guess I will say this if you want a picture of her please e-mail me and I will send out a mass e-mail with the photos but if you don't I totally understand. Decide what you can handle and what you need to see. If it will give you a better idea of what she is going through I will share.

Thanks for the continued prayer and support.

Day 2

Too bad it feels like its year 2.

Today the intubations Alivia (breathing tube) so that they could put in a central IV and then do a bone marrow biopsy tomorrow morning. She will be intubated for a few days until they get all the major testing over with. They just decided to do it today and not take it out so that she won't have to go in and out of sedation a bunch of times.

We don't' have a room right now because she is in the PICU which is probably the scarcity place I have ever been. There are some kids in there that will make you cry just by glancing at them. Its hard for me to swallow that Alivia is one of those kids now.

Pray that we get a good room when we get out of the PICU (we would love to have the room that we had before but the other end room would be good to.. There's something about the end of the all...) pray that the biopsy goes really well. Pray that they don't have to do foresic (placing a tube in her vein and taking out her blood and cleaning it and putting it back in...Scary and would mean that they would give her drugs to temporarily paralyze her. Pray the doctors can figure out what is wrong with her. They senior pathologist said today that he has never seen anything like this before. Not really what you want to hear.

Thanks for praying. We love visits. Our phone number will change so for now we can't take calls. When we get a new room we can update the address and number. For now any mail can still go to the same address and they will find us. Thanks for loving Alivia so much.

Hershey Medical Day 1

This is going to be a really long, really hard road. We still dont' know what kind of leukemia it is. But her white blood cell count is 190 thousand...a normal adults is about 10 thousand. Not good to say the very very least. I am lost right now. I don't know what to do.

Currently they are trying to get an IV and a blood sample. But its not working. If it doesn't work soon then they will have to put in a central line (a big IV in her groin area) this will be pretty bad because the needle they have to use is about 2 times bigger than what would work for her little viens.

I want to scream, or cry, or run away. I'm not sure. But I know that God had this planned and isn't suprised by any of this. I just can't wrap my brain around it. It feels like a bad dream. Someday I will look back on all of this and see that it made us stronger as a family. But for now I am scared out of my mind. she's just so little.

Feel free to call us anytime...distractions are great. Our number is (717)531-4866 and cards or little toys would be wonderful too. We can't have any flowers/live plants because they breed bacteria.

Our address for now is
Alivia Haughery
Room 7266
Penn State Milton S. Hershey Medical Center
500 University Drive
Hershey, PA 17033

We will know tomorrow hopefully what kind it is. There are 3 possibilities A.L.L., A.M.L or J. A. M. L. We are hopeing for the ALL because it is the easiest to cure. It takes 2 years of treatment but most of it is out patient. The first 6 months are in and out of the hospital. AML takes 6-7 months over very intense treatment meaning we would be in the hospital almost the whole time. and the other one is super rare and really hard to treat and they didnt' even explain anything about it.

Right now we are just worried about the IV and hopeing not to get a central line.

thanks for all the offers of help and the prayers. Please continue. Thanks

Routine Dr. Visit

What started as a routine doctor visit turned into a traumatic/scary
situation. We went in for Alivia's 1 yr immunization and we had some other little concerns to address (runny nose, puffy eye and belly button "pimple"). About a week ago she had what I thought was a pimple on her belly button. I touched it (but didn't squeeze cause that would be mean!) and it popped. But since then it hasn't gotten smaller but instead has become a bigger bloody spot. So he looked at that and said it was probably an umbilical hernia. (the word pediatric surgeon was mentioned). While look at the belly button he also pressed on her belly (as doctors do) and found a mass on the left side. This is where the scary began.

We went immediately from his office to the hospital (across the street) and waited around for about an hour for an ultrasound. I had to pin her down and she screamed like she was being tortured, which for a baby this probably was torture! After the test was done the tech went and reviewed the pictures and came back and told me she had an enlarged spleen. He then, very seriously, walked us back to the waiting room where he called her pediatrician. I, of course, am starting to cry by now. So our DR. says that she needs blood work and we may need to get it done with a specialist or we may get it done in Lancaster. He makes a bunch of calls and decides it will be okay to get it done in Lancaster tomorrow morning. In the meantime we are back home and I have already made the mistake of looking up enlarged spleen on the internet...DON'T DO IT. Lots of scary options but also some not so scary. So we are praying desperately for the not scary options. Regardless of scary or not we are praying she will be okay. Please pray with us. We are so confused and sad and terrified. We need all the prayer we can get. Thanks

The Park

It is starting to be Spring. I love spring. So Sunday afternoon we took a nice walk to a local park. I didn't even realize how nice this park was till yesterday and I'm glad we went. Livi didn't like the swing but I think we'll try again sometime. Maybe it's just one of those things you have to get used to. She did however love all the dogs people were walking around. I think we may need to get one someday. James would love it as much as she would. And I wouldn't hate it either. I always wanted a puppy. We definetly have the yard for it.

Turning the clocks ahead takes on a whole new dimension when you have a baby. She was out of sorts all day yesterday. (maybe that's why she didn't like the swing...) But today she seems to be back on track. I have a feeling another tooth is right around the bend. And she is going to start sleeping with a night light because she has been waking up screaming and I thought...maybe she's scared. Anything that will make her sleep more at night it worth a try.

She just woke up from her nap I have to run.