Day +21

Alivia got a dress today and she was instantly in love with it and had to put it on over her pj's. Thanks Mrs. Kachur.

Here is Alivia helping Nurse Carol with her tubes.

Alivia recieved a bunch of nice gifts today and one not so nice one....an NG tube. The doctor came in at 7 am and informed me that she was getting one today. I was half asleep and in a state of shock so I just nodded. When I woke up more and my dad got here we talked about it and decided we wanted to talk to the doctor about it more so he came back and we talked to him, then to numerous nurses, Gigi, James and our transplant doc (who happened to be on the floor but not on service this weekend). All the medical people said that it was inevitable because by the time all of her meds are oral she will have to take up to 30 doses of meds a day. That means if they are all oral I will spent my entire day giving meds. No thanks. The next decision was to give it today or wait till Monday. Either way no fun. So after much discussion James and I decided that we should get it over with and give her a little more time to get used to having the tube. So 2 nurses came in and we started the whole process. It was horrendous. The measure the tube so that it will end up right inside the stomach and then can be taped to her check. She knew something was up and wasn't too pleased. Then they dip it in lubricant and start feeding it up her nose and down into her stomach. She flipped (as I would have) and she wasn't swallowing (what you need to do to get it down) and it came out her mouth. She was distraught, I was ready to freak out. I picked her up (I had been helping to pin her) and held her and she just grabbed onto my neck and wouldn't let go. She just kept saying Mama over and over and really crying. It was the saddest thing. AFter a bit I had to peel her off and lay her back down. It was so hard and I just wanted to call it quits and hold on for dear life. We tried again and she was crying but I was able to talk to her and tell her to swallow and she obeyed me (cause she is the best kid ever) and after a bit they got it down. Then she started to gag and throw up. They said it feels like a pill is stuck in your throat. The throwing up lasted for a bit and we got her some anti-nausea meds and I held her till she fell asleep. She didn't even want me to move for the longest time. Once she was asleep I finally let myself cry. This was one of the hardest things we've had to do in a while. All the chemo was hard because we knew what it would do but we never had to pin her. This was different and she was so sad even when she finally woke up from her nap (over 4 hours later). If you asked her what she wanted to do she would say no and point to her nose as if to say "I can't do that I have a tube in my nose" By the end of the eveing she was starting to perk up a little but is still pretty worried about the tube. Pray she gets used to it and it doesnt' even cross her mind anymore.
Her is what she looks like with the tube. Still the cutest girl I know. (and the sweetest and the bravest)


Thanks you to...
Georgann Kachur for Livi's new favorite dress and for the realy great cookies and brownies
Rach for the card
Jen Van Buskirk for the card
Sherry Vislosky for the stickers, flip-flops and book
Henry and Sherry Hill for the generous gift and card

Thanks to the following people who helped with the nurse gift
the Sheffer Family
The Bowden's
Diana Bennett and family
Shannon George
Cathy Schloemer
Deb Bartek
Jill Piper
Bonnie Myers
(most of the people on this list work with my dad...again I am so everwhelmed by your wanting to help me and bless James, Alivia and I. My dad sure works with some great people)

Day +20

The last few days have been ones of very little sleep for Alivia (and thus for me). For some reason (we are blaming the new oral steriod) she hasn't falend asleep till around 1am. And then today she only took an hour and fifteen minute nap. Not her norm. Thankfully we were able to talk to the nurses and get her evening dose move till 5 pm instead of 9. Unfortunetly tomorrow we add a morning dose and thus the two doses have to be 12 hours apart so there is never a peak in the amount of steriod in her body. Steriods will hopefully keep the GVHD at bay. Pray that the keep the GVHD and not the sleep at bay.

Her WBC count has been fluxuation as is the norm for transplant patients. We are still on track for what is expected. Lots of waiting. Thankful no fevers (pray that continues). Her immune system is still fragile and we are still being super careful not to expose her to anything. She is getting platelet transfusions almost every other day and red blood cell transfusions ever 4 or 5 days. In oder to go home she would have to keep an ANC of over 5000 for three days and not be transfusion dependent. So we could be here for a while.

She has started to eat a little. We are hoping to avoid the NG tube (a tube that goes up her nose and down into her belly and would stay in indefinetly). If she doesn't start to eat more or doesn't take her oral meds well then she will get one on Monday. They let us decide and we said we would like to give her the weekend to eat more (as she only really started to want to put anything in her mouth at the beginning of the week). So please pray that she starts to eat more than she's eating now (and things that actually have some calories and protien to them) and also pray taht as the add more meds she wil continue to take them. She may have to take up to 15 oral meds a day and that would be hard for anyone (all liquid).

A few photos from the last couple of days....

A cheesy grin (that I can't resist)


Because of the sore bottom she spent most of the day in leggins, boots and a painting smock.


Today was the return of her two favorite men...Pa who was in Indiana ore taking a really long nap if you ask Livi


And Da who couldn't visit cause he had to lay tile in our bathroom so that the tub could be coated on Friday. He worked till 2am. Thanks babe.


Thanks to...
Phyllis Miller for the generous gift and for helping with the nurses gift
Marge Lageman for the soft purple robe
Beth Chase (and family) for the stickers, movie, socks, puzzle, books and magic grow sponges (big hit this afternoon)
Leslie Yoder for the sweet card
Vicki Moore for helping me with the thing for the nurses
April Spinetti for always encouraging me. (miss you!!)
Deb and Rick Gilgore for both of the cards
Eden and Aksel Yoder for the cool Princess birthday gift for Livi. She loves it and had to show her Daddy and Pa when the got her tonight
Aunt Kathy for the cute wind-up toys
Nicholas Haughery for helping with the nurses gift
Marmie for the stickers and card
Cathy Schloemer for the stickers
Carol Jean Fredrick for the stickers and card
Carla Sandbothe for the stickers and card (trust me you can never have to many stickers....she goes through 5 or 6 sheets each time she plays with stickers...which sometimes is 2 or 3 times a day)
Maryann Plesnicher for the generous gift.

Day +19

This will be short as I am tired and it was a long evening. Livi is sleeping peacefully after another 3 and 1/2 hour rocking session. She just doesn't want to miss anything. She falls asleep for a second and jerks herself out of it. Also the steriods don't help any but make her jittery.

I visited with my dear friend Leslie today and it was so nice. Thanks Les for the fun. I know I have mentioned friends visiting over the last few days but we are not having a lot of people in and out of the room right now (besides doctors, nurses and family/close friends) I know many of you would like to see Alivia right now but for her safety we are limiting the number of people she comes into contact with. We are not even at a point where she is allowed to leave the room. When she is completely cleared of all of this (in a year or so) we'll have to have everyone come visit. Thanks for understanding.

Thanks to everyone who made diaper rash suggestions. We have all the doctors and nurses involved and are using Stomahesive, No Sting Barrier Film and Criticaid. It is what the skin doctor recommended. No over the counter stuff works anymore and even Triple paste is useless. Because of her WBC count and the after affects of the chemo it is very hard for her skin to heal right now. She spends most of her days sans-diaper and has a standing daily appointment with the skin doc till it starts to clear up. Prayer is the best thing you can do for her right now.

I will post pictures tomorrow and do the thank yous then too. I need some sleep.

Day +19

After well over 3 hours of rocking and a dose of Morphine, Alivia finally fell asleep for the evening. That girl can fight sleep like no one else. Today went well. She didn't throw up at all, so it seems we've finally figured out the perfect anti-nausea med schedule. We'll see tomorrow. She took her meds orally and tried to eat a bit (she ate about 40 sweet potato puffs...80 is a serving). She also drank about 4 oz of water throughout the day so that was great. Her poor bottom is a mess. It is so hard to change her diaper. She screams, gets rigid and fights to get away. It is the worst and I seem to always get to do it. I feel like I'm torturing her but I know leaving her bottom dirty will just make life so much worse. Pray that something will start to work and it will get better.

She had another dose of GCFS (white cell growth booster) and it made her WBC's go to 12. Very good. They will now see if she can hold onto them herself again. Pray that she does. She got another platelet transfusion (maybe it was from one of you who donated on Sunday! Thanks so much and thanks to Jeremy S. who donated today!!) Remember if you are A+ and want to donate platelets to Alivia let me know how your name appears on your drivers license and what your birthday is and I"ll get you signed up. You have to be approved by me/signed up by me before you donate or else it won't go to Alivia. Also remember if you are o+ and want to donate Red blood cells to her you can do that also. I need the same info either way.

Sonya and I painted the window at the end of the hall today. Thanks friend for the much needed visit. I had such a good time catching up. And of course can't wait for girls night. I had the best shower I've had in 28 days thanks to one of the other mom's on the floor. They were going to be out of there room for the morning so she let me use their shower. I felt like a real person for a minute and it was amazing. Even if all the other showers are in the gross shower at least I got to take one "normal" shower. Thanks Trish and Jackson.

Anyone who wants to get signed up to be a bone marrow donor can do so Thursday 3/29 from noon till 5 pm at the Hershey Medical Center Auditorium. I think it is free and you don't need an appointment. Just follow the signs to the auditorium from the North entrance. Being a donor doesn't mean you will get a call. It is such a slim chance you will ever match anyone but being someones match would be the greatest thing. I hope someday I match someone so I can repay the favor. Also if you are currently pregnant you can donate your cord blood to the national registry. Just go to marrow.org to get the info you need to donate. Someone out there did that for us and we are so incredibly thankful. I know if we ever have another baby I will donate the cord blood without a seconds hesitation.

Thanks to...
the Youngs for the card
Claudia Curry for the princess building set. it is a huge hit. I'll try to get a picture tomorrow.
The Freemans...great photo Tony and Lori. Major points for winter bathing suits.
Steph C. for the card
Troy, Jodie, Jalen, Bryce and Chase Campbell
Jim, Joann and Brooke Smith for the card and stickers
The Byers for the card, photo and stickers
April S. for my card.

Thanks to everyone is currently doing work on our house. It is such a blessing to know that Alivia will go home to a clean house. Your sacrifice of your time means so much to us. Without you we would most definetly not get this all done. I will try to post some photos from the next work day at our house. (you can still get in touch with Bill H. if you want to help out..there is a ton to do before we get to come home)

Also don't forget to get my your stuff for the nurses ASAP. Get your kids to participate, your neighbors...anyone who reads this. And my dad is in Indiana so you guys have the chance to drop things off at our house or give it to him at work. He will return to Hershy Thursday afternoon so get it to him before noon Thursday.

Day +17

As promised here is the picture of GUP and Rere with Livi. We were all set to take a picture when she fell asleep just laying on her bed. This doesnt' usually happen so we just had them lean in and get a snapshot. Thanks again for coming guys we loved having you.


Uncle Aaron sent us a photo of himself that can be a puppet too. Here is a photo of Alivia, Pa the birthday boy and Uncle Aaron.


Alivia spent some time painting with one of her best friends....Grover.


And finally here is Pa, the birthday cake and the cutest girl we know. We tried to make it a special day. Happy Birthday Dad, I love you.


Today was a lot like yesterday. She threw up first thing this morning again and did a few more times throughout the morning. We are working with the nurses to get a better anti-nausea med routine down. At first this morning her counts looked weird/bad and so they redid them and they made a lot more sense the next time. They held pretty steady from yesterday. She may get another dose of GCFS in the coming days. Otherwise everything remains the same. They are still trying to figure out the perfect dose of blood pressure med to keep her pressure down. They uped the dose just a bit tonight to see if that helps. The diaper rash is still bad. She screams and gets rigid when we try to change it...unfortunetly we have to change it quite a few times a day. Please continue to pray for her rash.

Thanks to...
The Loveland's for the picture and the animals.
Marmie for the card for me and Gigi (she got teary eyed cause it was so thoughtful)
GAL for the card for Pa
Aaron for the card and puppet of you
Xander for the cutie pic and sweet note
The Pete's for the sheetz card. You guys are way way way to generous!!

If you are planning to participate in the gift for the nurses that I mentioned yesterday and you live in Indiana then you don't have to send it to me. My dad wil be in Indiana from Tuesday afternoon till Thursday afternoon. Drop it off at his office or at our house and he will bring them back with him. Don't forget to participate!!! Thanks. Here is the list of nurses one more time for those who did read yesterday....Kristen, Carol, Erin, Brandy, Collette, Jodi, Theresa, Teresa(there are 2), Winnie, Hilarie, Kami, Amanda L., Deb, Ashley, Brooke, Ed, Becky, Kim, Manda and Karli. Also Denise who cleans our room.

Day +16

I'll post pictures in the AM but for now a brief update. Livi's counts did drop rather dramatically but that was what was expected. Her WBC's are now 2.8. The doc said this is okay cause these are her own cells with no help from the meds so tha is good. She also said that this week is when the real healing begins. Also this week is when the VOD could start or the GVHD. So they are really going to watch her closely for both. In a few days she may need another dose of GCFS to boost her white cell growth but for now this it okay. THis week will be one of watching everything closely. Her diaper rash is back with a vengence. She cries whenever she goes to the bathroom and gets really upset when you change her. She didn't ake her meds this morning..well she took them but they all came back up. First thing in the morning a lot of transplant patients throw up for months after transplant and it seems she is on the same track. She actually had quite a few times of throwing up today but that seems to be the norm right now. I hate to watch it and just feel so bad for her. She ate half a banana but couldn't keep it down. Then later after some Zofran she ate 10 pretzels and took all three of her meds and they stayed down. We were all so proud of her.

Otherwise she had alot of fun todya. She is amazing to me, she can throw up one moment and be back to smiling and playing the next. She is the toughest cookie I know.

Please pray for her diaper rash. Pray that she can keep more food down and that she will have increase desire to eat. The doc's have said that after all the meds your taste buds are a mess. Older transplant kids say that nothing tastes the way you expect it to. Livi was picky before the transplant. Please pray she is able to eat more and more. Pray that VOD and GVHD stay at bay. Pray that she is able to hold her counts on her own.

Thanks to Gup and Rere for the visit. It was sonie to see you guys and Livi woke up from her nap and the first thing she said was "GUP?" and I said "he went home" and she said "yea..GUP, Rere...home" too cute.

Day +15

Another good day today. Livi's counts were as follows for the nurses amoung us...
WBC-9
Hct- 35.1 (up from yesterday meaning she is starting to produce red cells as well)
Hgb- 11.8 (also up)
Platelets- 31 (down from yesterday. hey are the last to recover after transplant so she will need a tranfusion tomorrow probably...her knees are all bruised from kneeling. when platelets are low you bruise very easily)
ANC- 8100
Neut %90 (woo hoo)

Livi decided naps were stupid today and only took a 15 min one and still stayed up till after 10. She obviously is feeling more and more like herself. She did have fun playing with play doh...in fact here is a picture of Gigi and Livi. They were making eggs and pizza.


Alivia is just exploding verbally. Anyword you say she can say...pretty much. We play and game where we say I bet you can't say....and she says it. Very cute. My Uncle Pete and Aunt Marie came to visit today and before they came she was saying ReRe (Maria) and GUP (great uncle Pete). I'll be sure to get a ReRe and GUP photo for tomorrows blog. I know most parnts think their kids are super smart and I am not the exception. I can't describe it but she does much more and remembers much more than a 2 year old should.

Oh and here is her door. I too the photo from the inside looking out so the words are backwards.



Now some of you may remember a few months ago I can up with an idea to bless the nurses from the clinic. Well I would like to attempt to do the same thing for the nurses here on the floor. They have been so great and made this whole stay a little easier. I don't want to say what it is we did because many of them now read the blog (ladies stop reading this post now so I can be a little stealthy).
Anyway if you want to participate and remember what we did get to it now. If you don't remember you'll have to go back and read the August 2nd post. Again nurses quite reading this cause I know you are still reading. Anyway....this time we don't have as much time as last time and since today is Sunday you could do it today and geet it in the mail Monday. Send it to our hospital address which is
Alivia Haughery
Room 7260
500 University Drive
Hershey, PA 17033

And the nurses names are
Karli
Manda
Kim
Becky
Ed
Brooke
Ashley
Kristen
Amy
Deb
Amanda
Kami
Winnie
Theresa
Jodi
Colette
Brandi
Carol
Erin


Also Denise who cleans our room. She really cares and does a wonderful job. We always miss her when its her day off (and end up cleaning the room ourselves)

I may think of some more but my brain is fried right now. And if you want to chip in a buck for something I am going to be getting that would be great. I will post a picture of everything before I give them to the nurses. Thanks.

Idea

In case you are having a hard time coming up with a picture idea...here is what my dad's office did. You guys look great. Sure made us laugh.




Just so we're clear my dad really wanted me to post this picture so all blame goes on him.

Day +13 and +14

The last two days have been good. I decided to paint Livi's door instead of blogging last night. She now has a picture of Elmo, Grover and Big Bird. She loves showing her Grover doll the picture of him on the door.
Her counts have continued to rise (in a good way). Her WBC's are now 4.1 (ANC- 3526, Neut %77). They have had her on a medicine called GCFS that helps to stimulate the growth of WBC's but since it is doing so well they will start to cut back on it and so there will probably be a drop in the number of WBC's over the next few days.

They are starting to try to get her meds to be oral again so that at some point we can go home. Also they are tapering her IV nutrition. She will have to start to eat again, take oral meds and produce enough WBC's without help from meds in order to go home. The earliest might go home is day +28. That is only 14 days from now! Wow. I am trying not to think about it too much. Currently our house is unlivable because of all the construction going on to make it better for Alivia when she comes home. We are not counting on coming home by day 28. Just some patients get to. It would be great but we will stay as long as it takes to be safe for Livi.


Please pray she starts to eat more and keep it down. Her appetite doesn't really exist right now so pray it will come back. Pray she has less nausea. She could have nausea for months after we are home but we would love for her o get over it. Pray that she starts to take her oral meds better. She gets so upset she throws up each time she takes them. Pray there are no complications.

Thanks for the cards from...
Marmie (cute stickers)
The Kimmels (thats for the generous gift)
Gary and Patty Smith (She already used the stickers)
Bumbarger
IHS Key Club
Heidi Nicoll (listened to the DC...it was sweet)
Misty Wilson (keep the stickers coming...she goes through them as soon as she gets them)
Kelly Christman (that is one of my favorite authors..thanks)
The Adams
The Camps (you guys are way to generous.. thanks)
The McCombie's (more sticker fun..thanks)
McClements (Great Granddad and Great Grandmom)
The Duffee's (such cute pictures and thanks for the pony. Did you notice her cuddling it in the picture? She loves it.)

Day +12

Alivia seems to be suffering from a side affect we call "bad-teethy-osis". Thankfully it is easily cured by removing said bad plastic teeth from ones mouth. But doesn't she look way to cute?!



Our day started with some news. Alivia's WBC's are up to 1.4! This is what we are waiting for but it is really early for actual engraftment. So we are cautiously optimistic. We will have to wait and see what the counts to come bring. The one doc said it could have been an error in the lab, or it could be engraftment. I want to be excited but am also nervous because a high, fast rising WBC count has always been our problem. Pray that this is engraftment and that it means the transplant is working. Even if it is engraftment it will be a while before we are out of here. She is still not at a point where her immuse system is strong enough to protect her. I definetly wasn't expecting WBC's this early on (any thoughts Kristine?)

Thanks for today to...
Tom Kurtz for stopping by on the way to your retreat. It was so nice for my dad to have a friend visit and thanks for donating blood for Alivia. And for the candy (I grew up on Garner's and love their chocolate filled with peanut butter. i used to save up to get it when I was little...50 cents is a lot when you are little. You got everyone something special cause my dad likes chocolate and raisons, my mom likes chocolate and carmel, cynthia likes dark chocolate and james likes candy.)
Cards from...
Marmie
The Ross family
April (missed you today..get better already)
Fairy GodMother (sweet pictures Miss B...4th of July was so fun)
Jan McKelvey (Livi knows the sign for chicken and did it when she saw the pictures)
Randy and Jerelen Wolfe
Benjamin Kim (and his parents)
Cynthia Snyder
Tim and Donna McKelvey
Jeff, Jen and Calen (like the photos)
Greg, Rochelle, Brielle, Caeden, Austin and Liam King
Bill and Diana Bennett (and Kids) thanks for the whoopie cushion
The Moores
Becca Allen (thanks for the generous gift cous)
Mike and Sarah Sams (Livi liked that the kitty had "Gwo-va" just like her) thanks for the movies too.
Cathy Schloemer for the Mrs. Potato Head
Ann Bowden for the DVD's and alphabet magnets
the Rices for the box of goodies. Currently the recorder is the favorite...good pick Izack
THe Sherf's for the super cool purse (I love madris!) and bath and body works stuff (I will never smell bad again)

Pray for more growth of the new bone marrow, no eosinophils (the kind of white blood cell we had to many of before). Pray that the GVHD will stay away. That she will not have any fevers or infections and that things will continue to go smoothly and we will be one of those families that "breezes through" transplant.

As promised.... pictures

Livi with TJ Bearytales. He makes her laugh

Opening a present from Nyah...she's very good at opening.

The birthday girl and her momma

Drinking something (hasnt' been done in over 2 weeks) and she ate a few bites of ice cream cake. We were so excited.

Wearing her fairy wings. She had gloves on too but took them off. Too cute.

Day +11/2nd Birthday

For some reason I can't upload any more pictures today so I'll have to try again tomorrow but I did upload a few on the other posts so check those ones out.

Today was a pretty good day overall. Our nurse was Manda and Livi really likes her so that makes the day much easier (we like her too) Alivia woke up and my dad was here and he said she just layed there for about 15 min staring at all the decorations. She was a bit out of sorts this morning and so I didn't go back to sleep but Livi, Pa and I had a nice time playing with her new play Play-Doh set from Scott and Ang, painting with toothpaste on her chair tray, cleaning her tray and she ate for the first time in 2 weeks. She had a great nap, I got a nap and she was in a much better mood after. This evening Livi's uncles stopped by for a visit. She was so excited to see them. They made a movie for her and we all enjoyed watching it. We had an ice cream cake and she opened a few of her presents. She had been opening them throught the day and we saved some for tomorrow. Her birthday will go on for a few more days. I think she had a good birthday. She is sleeping peacefully which is huge. She definetly experiences more pain at night or is more aware fo it and so we have been giving her morphine every 2 hours at night. She seems pretty good (pain wise) during the day as of today. The doctors say she is doing very well. The more uneventful it is the better. Her blood pressure is still running on the high side so continue to pray for that. Also pray that the mucusitious will continue to remain minimual. Her white blood cell count was .2 today...it has been less than .1 for over a week and that could mean that it is starting to engraft (grow). THis would be exciting. We are trying not to get overly excited because it can fluxuate when it is engrafting but still that would be great if it was engrafting already. Pray that Graft vs. Host Disease (GVHD) doesn't set in. That is the big worry when the counts start to rise. Visit friendsofalivia.blospot.com to find out more about GVHD

Thanks for the cards from ...
Ashley, Kami, Collette and Kim (last nights nurses) for the first card of the day.
Jude (and for the coloring pictures)
Rick and Deb Gilgore (and the gift for James and I)
The Heitlands
The Millens
Brian, Tonya and Natalie Scott
Kelly Tonkin
Lancaster Christian School

And thanks to...
The Brigouleix's for the mini pot and pan
The Almengor's for the Panera card, Dora bubbles, Prayer cards, fake teeth, photo album, lip gloss for both Livi and I, M&Ms, Hat (she'll get to open them tomorrow so I'll send pictures of us with the fake teeth)
Krissy Evans for the dress up stuff (I tried to post a picture of her with the wings on but it didn't work...I'll try again tomorrow)
The George's for the Cinderella doll (which Livi calls baby)
Mom for the care package (we missed you today)
The Knutsens for the mug, glitter crayons, word cards, M&M, paper and gel stickers. (she didn't open them yet so they will help make her birthday a birthday week)
The Mike's for the PJ's, Book, Magnetic Doll and my new favorite dress for Alivia. (Cynthia is washing the PJ's and dress so I'll get pictures of Alivia in them once the come back)
The Pete's for TJ Bearington (she loves him...remember Teddy Ruxbin? This makes him look so silly. He blinks, wiggles his ears and she has already figured out all the buttons. I got great pictures of her with him that I'll post soon. Oh and she had to introduce all of her other stuffed animals to him..thought of that herself)
Nyah Smart (and her Mommy and Daddy) for the Little Petshop Doctors office. Its really cute and the care package for me was such a treat. I just finished a magazine and now I have 3 new ones. Thanks so much.
John, Chris and Will for the hilarious video, cards and tape of you guys reading books. She is going to love listening to you read the books. And if she misses you I can pop the video in. Thanks for hanging out with us tonight. You guys always make us laugh.

More pictures tomorrow I promise.

Who spent the day with us

Uncle Will, Uncle Chris, Uncle John and Nan enjoying some birthday cake. We all got to eat in the room because we found a cake that was completely sealed and got it approved by the docs.

Pa, Dora and James (Da)

Our nurse for the day Manda (notice Livi is leaning her head into the picture. She is such a ham). Livi can now say Manda and really likes having her in and out of our room all day (we like it too). She can now say two nurses names (Brooke and Manda) wonder how many she will be able to say by the end.)


Notice someone missing? Gigi got is sick AGAIN!! Poor Gigi. She missed the birthday and we missed her. She got the stomach flu this time. We think there must be a sign on her that only germs can see. Maybe she is just catching all the germs and diverting them away from Livi and I. Thanks for being our germ catcher Gigi...get better soon.

Birthday Decorations

We woke to a sweet message from our nurse on the dry erase board. Notice how the pictures are starting to creep up the wall We are getting more each day. Love it. Keep them coming.

My Aunt Joanne painted this great picture of Grover.

I painted some balloons on the window and Daddy got Livi a real Dora Balloon! Thanks for the banner Tina

I painted our door with balloons, a cake, the number two and the count of days. The hospital provided the streamers and banner.

Livi's bed with her Dora blanket. She got a new pillow (Elmo) from Aunt Viv but since Nan carried it into the room she is convinced that Nan made it. We tried to straighten her out but once her mind is made up...

Day +10

I get to fall asleep tonight in a beautifully decorated room. My dad and I went streamer and paint crazy after Livi fell asleep so she will wake to her first birthday suprise. I'm excited for her to see it.

Her blood pressure was much improved today. Not perfect but no where near the high numbers of yesterday. I'm so thankful. She had a pretty good day...rough moments but overall pretty good. The meds are being controlled a better and so her sleep is more peaceful and her nausea doesn't seem to be an issue. She has mucusitous but it seems to be staying the same (not getting worse). Her bottom is still raw but no worse.

I only took one photo today. Guess I just forgot. But here it is...Miss Alivia taking a bath. She wears this visor to keep the soap out of her eye and she wears Glad Press and Seal over her broviac to keep it dry. The tub is really small but perfect for her. She gets to be unhooked from all her tubes for that little bit each day and it is nice to see her without them.


I got all the info for those who want to be designated donors for Alivia. If you are A+ you can donate platelets and O+ you can donate red blood cells. I need your name as it appears on your drivers license and date of birth to get you signed up to be a designated donor. You can either donate at the Donor Center (670 Cherry Drive, Hershey) no appointment necassary, Monday through Friday 8-4 or at the Hospital Blood Bank (by appointment only...call 531-8232) Weds 5-7:45 or Sunday 8-3:45. You have to be on the list before you donate in order for Alivia to use it. If you just want to donate for the credit (any blood type other than A+ or O+) then go to your local donor center (not sure what to do outside PA but you could try) and say that you want the credit to go to Alivia Haughery at Hershey Medical Center.

We got a ton of cards today. It was fun for everyone reading them.
Thanks to....
The Camps
Matt, Viv, Nicholas and Hannah (cute photos...I think Hannah looks like you, Viv, when she smiles)
The Walsh's (loved the family photo)
The Kisic's (cute dog and it was great getting to show my in-laws who you were)
Aunt Marcy (loved the photo reenactment...you are the best)
The Rice's
Great Aunt Lisa (the famous GAL...call me about a visit)
Yoders (T-minus 2 days...)
Kathy McVicker (the toys were a huge hit. We raced the penguins)
The Plesnichers
Dick and Barbara White (loved the family photo)
Marmie
Marge Lageman
Max and Laura Mohney
Grace and Samual (Livi laughed outloud when she saw the picture of you guys. She misses you like crazy. We hung one of the pics in her bed and each time she sees it she laughs. Giant Hugs from Mimi and Livi)
Jessica Bennett (I can't believe you bought the table for Livi...it is so sweet and exactly what I wanted. Thank you so much!)
The Wallworks (Alivia played the song in the book over and over and when she saw the picture of Erin she said "ern ( her version of Erin))
Dan and Deb VanHorn (Livi liked the cows)
Stella (you have gotten so much bigger since you were at our house)
Bill and Cynthia for the Tinker Bell toy. Livi really liked it (as you saw)
Scott and Ang- Loved seeing you tonight. Livi is going to love playing with the play dough toy. and the Dora candle was such a great idea (I was wondering what I would do for a candle) Love you guys.

We are saving all the packages to open tomorrow so it feels more birthday-ish. I will take lots of photos tomorrow and try to get a picture of the photo wall which has grown a whole lot.

Day +9

What to say about today. Rachel came to visit which was by far my best moment of the day. We talked about her coming and she e-mailed to say she was but I didn't check my e-mail and just forgot so when I saw her at the door I just started to cry. Thanks friend for coming it ment so much. I love you.

Otherwise the day was pretty rough. Alivia is starting to experience more pain and so more morphine so more hyperactivity. Also her blood pressure went really high today. It was pretty ense here for a while. It just kept getting higher and higher. 3 doses of lasics and 2 blood pressure meds later it is finally a little lower. Part of the elevation is due to pain but the main part is due to the meds that she is on. All transplant patients end up on blood pressure meds at some point or another but its hard to watch her like that. Her checks get abnormally flushed, lethargicish (hard to explain) and cranky. Right now I am still awake because I am waiting for the 2 am blood pressure and the 1:40 Morphine dose. Alivia fell asleep around 11:30 but has been waking up screaming every half hour or so. I will sleep after the pressure is taken and the next dose is given. Hopefully that will make it possible for her to sleep peacefully for a bit.


Picture of Livi with Rachel and Livi lounging.



I'm tired. I want to go home. I want a real shower that hasn't been used by a stranger who doesn't have the courtesy to clean up after themselves. I want to go bare foot and not be scared of the cooties. I want to cook for myself and my family. I want to have to vacuum. I want to check my answering machine. I awnt to have Alivia unattached to tubes for more than just 30 mins a day. I want to go to the grocery store. I want to stand in my closet and figure out what to wear. I want to sleep in a room that no one is going to walk in and out of throught the night. I want to be able to change the channel on the TV by pressing in the numbers of the channel I want (the remotes here only go up. so if you miss the channel you want you have to go the whole way around again). I want to take Alivia outside of this box of a room and play and run and be normal. I want my baby to be healthy. I dont' want to discuss if she needs another blood transfusion or which anti-fungal medicine to put her on or how much morphine she needs to be comfortable. I want to feed her and not have her live on IV nutrition. She hasn't taken a single bite of food in 2 whole weeks. I want her bottom to be better and not to bleed every time I change her. I want to put an outfit on her that matches and does't have to be changed because she throws up or her diaper leaks. I want to bake and cake and sing "happy birthday" and let her get icing from head to toe. I want her hair back. I want this all to be over. I want a lot but these are all things most people take for granted each and everyday. It's been a long day. Sorry for the rant.

Other ways to help

Yesterday I mentioned blood donation as a way you can help. Here are a few other ideas. You can collect Aluminum Tabs (on the tops of soda cans). These are donated to the Ronald McDonald house to help buy things for families and for the family room that we use here at the hospital. They can be donated in the parking lot of the Ronald McDonald House here in Hershey. Or give a bag to one of the Haughery's and they will make sure it gets to the hospital. Another thing they take is Magazines, Catalogues and other glossy paper. There are big green recycling containers at 6 locations....
Hershey....Ronald Mcdonald House and CocoaPlex Center (1100 Cocoa Ave)
Lebanon- McDonald's (757 Cumberland Street)
Lititz- Penn Cinema (541 Airport Road)
Mechanicsburgh- Mechanicsburg Middle School (1750 Market Street)
Middletown- Karns Food (101 South Union Street)


Another way to help is to become a bone marrow donor. I know that Alivia already got her transplant but there are so many others who need it it is a one in 20,000 chance that you will match someone. There is a drive being held March 27 from 7am to 7pm at Wintergarden in PPG Place Downtown Pittsburgh. The test is completely paid for by Amy's Army (Amy is a little girl who live in Mount Lebanon who has been searching for a donor for over 3 years. what if you got to be her donor?)

These are just a few ways to help out that are completely free but mean so much.

Day +9

Livi woke up with just bangs and some fuzz today. Here face is also starting to get a little puffy from all the steriods she is on. She is looking more and more like a kid with leukemia. Today had its ups and downs. We were quite a few times last night. Not unusual for us but when we were up it was hard to console her. I realized she is definetly starting to feel so pain. She threw up a few times when she first woke up and there was some blood in it. They gave her a platelet transfusion to help with the bleeding. Otherwise, she had a good morning with Pa and so I got to catch up on some much needed sleep. Then when we were brushing her teeth the nurse looked in her mouth and noticed some mouth sores. So after some consultation with the docs and nurses we started to give her a bit of morphine every 2 hours to help her out. It seems to make her feel better...so much so that after she gets it she is incredible hyper. It was funny but also a bit nerve racking because she was crawling, rolling, jumping and moving all over her bed with no regard to all the tubes hooked up to her. On of the biggest concerns is that she might hurt her broviac by pulling it out or tearing the tube. These things would be horrible because they can't realy fix it right now since she can't leave the room. Instead she would have to have a central line or get stuck all the time. Neither of which we want to do. Everything seemed to make it harder to rest for her today. She fought sleep more than usual. I'm hopeing tomorrow is easier Thankfully the mucusitous isn't horrible. Please pray it doesn't get any worse. Her bottom is the same. It still looks pretty raw but it hasn't gotten worse. Pray that this continues
On other blogs of older bone marrow transplant patients they have mentioned tingling in their hands and tonight she wanted to wash her hands in cold water over and over and I wonder if that is why...or it could have been a stall tactic to delay sleep. Again she was saying new things today...our favorite from today was when she was standing in her crib looking at a screw in the wall. She pointed to it and said "hole" and then "da". After asking some questions we realized she wanted Daddy to fix the "hole". Almost as soon as he got her she started to say "hole" and point to the screws. James put stickers over all of them and she felt much better.

Here are two photos from today
Gigi trying to get Livi to sleep...obviously someone was fighting sleep. Oh and watching TV.

During one of the many hyper times. She is way to cute.


Thanks to whoever dropped off the gift certificate to Hershey Pantry. We are excited to try it out. All the nurses were raving about the food when we said we had a gift certificate.

I wanted to let people know that if they want to they can donate blood in honor of Alivia. As of the the transplant her perfect donor for platelets has changed. It is now A+. I'm not sure I understand why but I will talk to the doc about it to find out. Even if you are not A+ (for platelets) or O+ (for red blood cells) if you are in Pennsylvania you can donate and say it is for Alivia Haughery at Hershey Medical Center and we will get a credit so we don't have to pay for it. If you want to be a donor for her specifically you have to be donate in Hershey and I have to fill out forms that make you a designated donor. Please consider donating as there are tons of people who need it and the credit will help Alivia. And thanks to Uncle John who goes every 2 months even though he doesn't like needles. Thanks for loving Livi so much.

Day +7

We are buried under a ton of snow but it doesn't matter cause I don't have to go outside. It did mean that my big visit from friends didn't happen. I was so dissappointed. It was the first time in over a week I was going to see friends and I had been looking forward to it all week. The snow kept James away too but he will be here tomorrow night and spend all day Sunday with us.

Alivia did much better today than yesterday. She only threw up once so I think the meds every 6 hours are making a big difference. I spent a big part of the day painting a window at the end of the hall. I was going to do it with my friends but did it myself. The hall sort of emptied today. There were quite a few discharges but not many admissions. And tonight a bunch of the nurses couldn't make it so it just seems kind of lonely and deserted around here. It is even harder to be here when I don't know any of the nurses. Throughout the week I know the nurses (and the days of the weekend) but the weekend nights I don't know many and it makes it harder. Well tomorrow Brooke will be here and she is great so that is good. (Livi loves her and even says her name)

Livi is saying so many new words. She is exploding verbally. It is fun to watch. It seems like each day she is saying something new. She acts like its no big deal. We will ask her "did you say....whatever the word is" and she'll say "yea". So funny. The other day I was saying something about her friends Samual and Grace and I asked her where Samual was and she said "home". Too sweet.

Here are three pictures of Alivia enjoying the new toy she got from Marmie. She thought it was so funny and kept going back and forth across he room with it.




Thanks for the cards from...
Deb Bartek (and family)
Indiana First Bank
Becca, Tim, ReRe, GUP, Sarah, Mike and Huck (loved the dress Huck, was that one of the original ones Rere got for the wedding and decided not to wear? We love you guys)
Rach (love the shot of you and Livi on her birthday...the first one. Can't believe she was ever that small.. and could Easton be cuter?)
Day Spring Christian Academy

And to Marmie for the cool dancing wooden man. Alivia loves it. I could barely get her to stand still for a photo (as you can tell from the photos). You are the best. Love you

Day +6

Today was not our best day yet. Alivia was throwing up on and off all day. When she wasn't throwing up she was her normal self or maybe even a little extra hyper. They stopped one of her meds cause it was making her poop too much which is a bit of a relief for her little bottom. But each time she throws up she poops too so we are constantly trying to keep her in a clean diaper. We are now giving her Fenergin (I think thats how its spelled but who cares) every 6 hours to keep the nausea at bay. This med knocks her out too so she was pretty sleepy this evening. Also she is showing some signs of mucusitious. Her tongue looks a little different. Not bad but like things might be starting.

We also spent the day picking hair off of everything. It is coming out by the handfull. It is so sad to watch. She doens't seem to mind but I love her hair and am really having a hard time (now is not really the time to tell me it will grow back...i know this but I still need to mourn another thing that is not what I expected when I became a mom) right now it is mainly the back that if coming out. So it sort of looks like she gave herself a really bad haircut (from the front) and just very thin from the back. Here are a few photos....

This is yesterday before the hair started to go.

About noon...starting to thin

Hard to really tell but all the long peices are gone and the shorter hairs remain.


Today was a hard day in this whole hallway. One of the families we've gotten to know this time around has a little boy who is 2 and 1/2. Today he was pretty sick, spiked a fever and got a bad rash. Another girl (about 15) at the end of the hall coded today. It was very tense and scary for a while. She is now stable but in intensive care. Our nurse was also caring for her and had a really rough afternoon. It is so hard to know that someone just a few doors down with the same disease as my baby almost died today. Just a reminder how bad this disease is and how scary it can be.

Please pray for all the families here right now. This is a hard place to be. There are some kids sicker than Alivia here and regardless of the stage or type of leukemia it is a terrifying, horrible disease. Being a parent of a child with a life threatening disease is draining to say the least. It is constantly on my mind, constantly in my heart. I dream about it and live it every day. Pray for a better day tomorrow. Pray that she will continue to be fever free and that the mucusitious will remain where it is or go away completely. Pray that her bottom heals and that she won't be so nauseas. Pray that this transplant is 100% successful and that she is completely healed of leukemia. Pray that she never develops a secondary leukimia down the road. Pray for good dreams for Alivia....it seems like she has quite a few bad dreams and cries out or says "no" in her sleep. It would be nice for her to have peaceful nights.

Thanks to....
the following people for cards...
Andrew (she liked the song and now says "drew" when she sees your photo)
Owen (boy if you get any cuter we are all in trouble!! Thanks for the frog Tina)
Phyllis Miller (good to have a face to go with the blog comments. Thanks)
Lori Carabello
Mamaux and Nick (that's for filling out the family tree info and the birthday card and present)

Also thanks to the TI (and Annette) for the great gift basket. I love it. We will probably use all the anti-bacterial stuff before we leave here and the nurses were all a little jealous..you can only stand so much purell and the alcohol smell)

Day +5

Today started with throwing up and meds to help and ended with the same. But in between we did a pretty good job of regulating the nausea. Still no signs of mucusituous...very good. Her bottom seems to be doing at least the same... I can't say better but definetly no worse. The new lotion (critic-aid) seems to be doing the job of at least preserving things the way they are. Thank God. The saddest news of the day is that her hair is definelty falling out. I was dreading this (along with a ton of other things) but leukemia is bad enough why does hair loss have to be part of it too? I think it should be a side affec that your hair gets longer and thicker and more beautiful. That would be more fair.

As always Alivia was mre than wiling to have a few pictures taken today...so here goes...
Firt with thenew bear se got today (she is smitten)

Second, getting smooched by the grandparents

With De-dad and Nan

With Mommy and Daddy

With the newly returned Pa and Gigi


Pray for less nausea and continued lack of mucusitious and other bad side affects. Pray that her Mommy candeal with the hair loss.

Thank you's for today....
Cards from...
Tom Beuche (Happy Birthday)
The Millens (I can't believe you found the ones from when we babysat all those years ago)
Rick and Deb Gilgore (for both of the cards)
The Marrow Foundations
Marmie
Linda Chirieleison (your granddaughter is a cutie and Livi loves Dora so she thinks she has a picture of the real Dora now)
Adam, Janelle and Jackson Erd
The Gang---Bessie Zimmerman, Bling, Seargent, Scary, Eeyore and Rodney Bones (Alivia loves picture so much. She kept pointing to Eeyore and saying "me". She misses you guys like crazy!)
Thanks to Lori and Dylan Martin for the cool green bear. She was showing it off to everyone who came in the room
Thanks to Claudia Curry for the great care package. The chocolate is gone already.
Thanks to Mrs. Curry's kindergarten class. The banner is cool and the picture is a great idea. Thanks for all your hard work.

My brought backa bunch of stuff from Indiana but we are waiting to open it so that she has something new for each day. Thanks ahead of time to Deb Barteck (can't wait to see what you got for Livi)
I will post another picture of our photo wall soon so you can all see your pictures and how many more we have now. Keep them coming we have plenty of wall space left.

Holly...I completely forgot about the ice cream social until later in the afternoon and by the time I went you guys weren't there. Maybe we can meet for lunch next time you are here.

Now for the birthday...she can have toys that are completely sealed. She love the Disney Princesses or the Disney Fairies. She like littlest pet shop things, pretty ponies, Polly Pocket (the larger ones), any toys that are completely sealed. Also you can order things from sites like hearthsong.com or playmobil.com which have great toys that come completely sealed and are easy to wipe down. She tends to like toys that you would think were for an older child. She loves playing with her friends Samual and Grace's farm from playmobil. Don't feel like you need to get her a present. Some people just asked. Also we are saving to buy a table and bookshelf for her room so you could always contribute to that. Again though please don't feel like you need to do anything. Your prayers are more than enough.

Middle of the day

I don't usually get a chance to post in the middle of the day but I wanted to cause I had the chance. We are now t-4.5 hours till the return of Pa and we are all very excited. If you say Pa she says "Shhh" cause she thinks he is off taking a really long nap somewhere. Each afternoon when he is here he goes to take a nap when she takes hers and so that is why we think she thinks he is taking a nap.

I wanted to re-post Alivia's address for all you want it.
Alivia Haughery
Room 7260
500 University Drive
Hershey, PA 17033

Keep the pictures coming for the picture contest. We are getting hilarious ones. Love to see all of your smiling faces each day on our wall. I'll give the full update tonight and I'll also include info about Livi's birthday for those who have been asking....She'll be 2 in 6 days!!

Day +4

I repainted the door the other night and just now am getting around to posting a picture. It is so relaxing to me paint and I call it my therapy.

Since Pa had to go home for a few days Gigi got to do morning duty (thanks Mom!!) I think the girls had some fun together....don't they look like it?

Livi got some stamps from my aunt Kathy and we finally got them out today. She had the most fun washing the ink off them after we stamped them (she did that for about 29 min)

When Livi is tired she does just about anything to keep herself awake. In this case it was hide and peek over the side of the crib.


Today is our 14th day in the hospital. It seems like we've been here forever. Livi had a difficult night last night. She woke up and threw up a few times. She is such a trooper and calmed down and went back to sleep. Her butt is still the same. It didnt' get worse which is good but it also didn't get any better.

I thought I would write a list of the top ten things I am thankful for and the top ten things I miss....
Thankful...
1. Bone Marrow Transplants...if it weren't for this transplant she would have no hope of ever being cured of this leukemia
2. Sweet Nurses
3. Grandparents (Gigi, Pa, Nan and De-Dad)
4. my husband who works so hard to take care of us
5. Things that distract and entertain Livi
6. Gift certificates so we don't have to eat in the cafeteria every meal (thats Crossway church)
7. Laptop in my room.
8. Mail call. I look forward to it each day
9. My friends who call and e-mail. even if I don't get back to them right away they still love me. Thanks girls
10. Slushies

Things I miss...
1. My husband snoring (just cause it means he's in the same room)
2. A bed that I can roll over in without falling out (if I lay on my back and put my hands flat beside me...my thumbs touch my leg and my pinkies touch the wall and the edge of the "bed")
3. Private bathrooms
4. Bathrooms that are closer than the other end of the building
5. My house
6. Being outside with Alivia
7. The clinic nurses
8. Making plans with my friends
9. Not having to wear shoes in the shower...probably 30 people shower there each day. Yikes.
10. Driving.

Thanks for the cards from ....
Ryle and Ben Mellinger (we hung the pig on the wall)
The Sentz's (Lyndon that costume looked great on you. I would have know that was you anywhere...)
Scott and Ang
Cathy Schloemer (why doesn't your hair still look like that?)
Tom Bueche (haven't watched the video yet...saving it for a rainy day)
Xander Booker (Livi said yes)
Maryann Plesnicher
C.M. from Virginia for the grea drawing of Alivia
Uncle John (Livi kept looking at the picture and laughing..we asked her where Uncle John was and she pointed right to you)

Someone sent us a Red Robin gift certificate...thanks.
And thanks so much to Mike Gerhard, Betsy, Chris, Vicki, Tracy, Mike, Bryan and Steff for the box of toys! WE are savign some and we got a few out today. It is so nice to have new toys to introduce and she just loves getting presents. Thanks for your generosity. I don't even know you and you went out of your way to bless us. Thank you so much.