Big Meeting

Wanted to start this blog with a cute picture so I am reminded who I am doing all this for. She is the most precious little girl I know and we are going to fight tooth and nail for her.

We had the first meeting with our transplant doc today. She is a very nice doctor who I have meet on other occasions and who Alivia is not afraid of (thankfully). She was very informative and gave us all books to read that will answer more questions. I'm full of questions but don't really want to know the answer to most of them cause the answers are hard to swallow. I am fighting not to dwell on the statistics right now. They are not very incouraging especially because of the type of leukemia that Alivia has. It is hard to get people with her disorder (or similiar disorders..because they have never actually seen this disorder before) into remission. Most of the time remission is neccassary for a transplant but we will get as close to it as we can before the transplant. Chances of a reaccurance of the leukemia without remission are higher. But we are trusting God that everything will be perfect. I'm just going to say the stats and then move on and not mention them again. There is a 13% chance of mortality, a 37% chance of reoccurance and a 50% chance of it working and her being healed. But God is not in to statistics is he?! He could heal my girl tomorrow. The best news we got today is that we will be home for Christmas. They want to do the transplant in January. Okay maybe that wasn't the best news...the best news was that her HLA typing (what they use to find a donor) is really good for finding a donor. There are 6 HLA markers and then those breakdown further into 10 total points they are trying to match. With a preliminary search there are quite a few people already that might match. They got our official permission to look at these people further. So they will start calling people who they think might match and doing further testing. Please pray for a perfect, 10 point match. Pray that the person they call will be willing and able and that they will be easy to find. Sometimes people aren't willing, have moved or have since developed something medically that would negate them from donating. So we praying for perfect.

Also please pray for Alivia's organs that they will continue to function well. Currently they are all doing well but any changes would mean a rush to transplant. We would love to avoid that. Pray that Alivia starts to walk soon. I know she is capable and just timid but for this mom it is really hard to see all the other kids her age or younger running around. I would love to have something that makes me feel a little normal. So that is a completely selfish prayer request...but there it is. Pray that God will provide us with a sweet nurse for transplant. We will be in the hospital at least 6 weeks and if today is any indication...I'm not too excited about leaving our clinic nurses. Even when we are discharged from the hospital we will still have to go to the transplant clinic for 6 months and I will miss the regular clinic nurses so much. One of the clinic nurses said that sometimes they will let transplant patients start going to the clinic again after a few months if they are doing well...that is something I will look forward to very much. Pray that Alivia's spleen shrinks or we will be having it removed the first week or so in December.

The pray request list could go on and on...but for now I'll stop. Mainly just pray for a miracle. Thanks

Thanks to Andy, Ann and Helena C. for the card, Janet B. for dinner and the Rickards for the note.

One last thing...if anyone works for a company that makes charitable contributions and they are looking for somewhere to donate go to friendsofalivia.blogspot.com . We have to raise quite a bit of money to pay for the drive we did on Sunday. Thanks

This weekend

I thought I would start telling you about the bone marrow drive weekend with our Saturday activities. Rachel (my best friend since high school, the person Alivia gets her middle name from and bone marrow drive organizer extraordinare) arrived and she and I headed to the wonderful world of Costco. We got all the snacks for the drive and headed to our car. Out of nowhere it started to rain. It was a hard, freezing, soaking rain. We were running around trying to load the car...laughing like fools. We noticed others around us just standing and staring so of course we had to stop and look. There in the sky was the most amazing rainbow I ever saw. It looked like someone took a marker and drew a perfect rainbow in the sky...and you could see both sides. Here are the pictures I took (couldn't fit it in one frame). We took that as a sign that the weekend was going to be wonderful.

That night we had dinner. Bill, Cynthia, John, Will, Erin W., Rachel, Dave, Gretchen, Andrew, Aaron, Rachel, James, Alivia and I waited forever to get our food. But we made the most of long long dinner (over 2 hours) and had a nice time together. Alivia did great cause she was with most quite a few of her favorite people..and they had taxidermy animals in the resturaunt which she found amazing.

Sunday AM we arrived at Cimbrian (where the drive was) around 11 and set up. The volunteers were so amazing. We had a crazy, busy day. Over the course of the afternoon we added 355 people to the registry!! That is 155 more than we originally planned for. So overwhelming. There were times when you couldn't even move around and there was never a dull moment. (Aunt Ann could you send me some of the pictures you took so we can post them for everyone?) I couldn't even believe how many people showed up because they saw us on the news or read about it in the paper. Probably about half the people I didn't even know. Thanks to every single person who came. You don't realize how much it means to me and other parents with sick children.

We had a nice time today. Andrew, my parents, Alivia and I spent some time at the mall. I took some cute pictures which I will post later (my computer is acting up tonight). Currently my dad and James are on the way back from dropping Andrew off at the airport. It was a great weekend.

Tomorrow we have our meeting with the transplant team. They won't be giving us a time frame (I don't think) but they will be giving us more of an idea what we are facing. Not looking forward to it at all but that is the next step (I guess). My parents and James' parents are going with us for support and just to have more ears listening...sometimes someone will hear something James and I miss so its good to have others with us.

Tomorrow evening Alivia is going trick-or-treating for her very first time.I will most definelty post some pictures. It will be good to have something fun to do after such a huge, scary day.

Thanks to Cheryl A, Vivian H., and Janet B. for the toys for the treasure box. Thanks to Marmie, Mamaux, Erin and the McClements for the great cards and to Sandra Knowles for the gift.

A super, huge thanks to the volunteers yesterday...it wouldn't have worked without you guys. The volunteers were Rachel K. (organizer/ location oversight/she-who-I-lean-on-most), Andrew A. (location oversight), Aaron A. (barcoding), John H. (barcoding), Jamie S. (barcoding), Will H. (health screening), Cynthia H. (health screening), Dave A. (my dad/crowd control/directing/jack of all trades), Sonya L. (health screening), Andy L. (greeting/publicity man), Erin W. (health screening), Angie S. (health screening), Scott S. (who jumped when we desperately needed help with health screening), Leslie Y. (health screening), Ann B. (Bill's sister who drove from Virginia and ended up being the refreshment table manager), Bekah W. (cheek swab queen), Darcy S. (barcoding), Jason (health screening) and Matt H. (clean-up)

This weekend

Thought I would start telling about the bone marrow drive weekend starting with Saturday. Rachel (my best friend since high school, the person Alivia gets her middle name from, and bone marrow organizer extraordinare) arrived and she and I headed to the wonderful world of Costco. We got all the snacks for the drive and then headed for our car. Out of nowhere it started to rain. It was a hard, freezing, soaking rain. We were running around trying to load up the car...laughing like fools. We noticed others around us just kind of standing and staring. So of course we had to stop and look. There in the sky was the most amazing rainbow I ever saw. It looked like someone had taken a marker and drawn this perfect rainbow on the sky...and you could see both sides. I was amazed and it was such a cool start to the weekend.

That night we had dinner with Bill, Cynthia, John, Will, Erin (who lives with us), Rachel, Dad, Mom, Andrew, Aaron, Bekah Walker, James, Alivia and I. It took forever but we had a good time. Dinner was over 2 and half hours. But we had a great time.

Sunday AM we arrived at Cimbrian (where the drive was) around 11 to get set up. The volunteers were so amazing. We had a crazy, busy time. And we added 355 people to the registry. That is 155 more than we originally planned for. I was amazed. There were some times when it was so busy you couldn't even more around and there was never a dull moment. (Ann B. could you send some of the pictures you took to me so I can post them for everyone)It was so amazing how many people showed up just because they saw the broadcast on the news or read about it in the paper. Probably about half the people I didn't know. Thanks to every single person who came. You don't realize how much it means to me and other families with sick children.

We had a nice day today. My parents, Andrew, Alivia and I spent some time at the mall. I have some pictures but I'll try to post them later. My dad and James just left to take Andrew back to the airport so he can head home. It was a great weekend.

Tomorrow we have our meeting with the transplant team. I don't think they will give us a time frame but they will at least give us more of an idea what we are facing. Not looking forward to it at all but thats the next step I guess. My parents and James' parents are going with us. Tomorrow evening Alivia is going trick or treating for her first time. I will post some pictures of it. At least it is something to look forward to after such a huge meeting.

Thanks to Cheryl A. and Vivian for the toys for the treasure box. To Mamaux, Marmie, Jim and Jean McClements and Erin for the great cards, to Sandra Knowles for the gift.

A huge thanks to all the volunteers yesterday..we couldn't have done it without all of you. The volunteers were Rachel K.(organizer/ location oversight/ main question answerer) , Andrew A.(location oversight), Aaron A.(barcoding), John H.(barcoding), Jamie S. (barcoding), Will H.(health screening), Cynthia H.(health screening), Dave (my daddy- directing/crowd control/jack of all trades), Sonya L.(health screening), Andy L. (greeter), Erin W.(health screening), Angie S.(health screening), Scott S. (who jumped in to health screen the last moment), Leslie Y. (health screening), Ann B. (Bill's sister who drove from Virginia and ended up being the refreshment table manager), Bekah W. (cheek swab lady), Darcy S. (barcoding), Jason (health screeing), and Matt H. (clean up).

We are so thankful to everyone who came...You'll never know how much it means.

Picture from today

Here is a shot of the treasure box. It gets picked over pretty quickly so if you bought toys and you don't see any of them its because they are gone. Some kid somewhere is enjoying them. Thanks to everyone who contributed !!

Still at the Hospital

We are currently getting a transfusion. Livi feel asleep and I decided to head to the 7th floor to write a blog. Its been a while since I've been up here and I can't wait to leave.

All of Alivia's counts went the wrong direction again! Her WBC's are up to 117. We are getting a red cell transfusion (the 3 hour kind) because they want to keep her Hemaglobin above 8 so that her heart isn't taxed. the only good number was that of her liver. It went almost back to normal. So that means we can up to dose of Gleevec with hopes that she will start to respond. If not they will add the hydroxyurea back. Not looking forward to that. Could mean more transfusions or maybe less. Uncharted waters according to our doctor.

We asked a few prelim questions about transplant and he said the goal was to do it in the next month or two. which might mean we get to do Christmas at home! That my friends would be unbelievable. I can't even imagine how much that would mean. He said that they dont' want to wait a year to do it but we've waited this long and as long as everything continues to go well we might get to wait. I'm trying not to get to excited. Only a might not a definete. But nothing is set in stone in our lives right now.

For those who live in Lancaster please tune into WGAL channel 8 news between 5 and 6 because we will be on it! they came to our house last night and taped a little story. Crazy. Guess we're officially "those people" with a sick kid now. each things makes it a little more real. If anyone can tape it please do. James is going to try to get home in time but we'll still be at the hospital and we really want to see it. I would rather have 20 copies than none. Thanks.

My brother Andrew got here safely from North Carolina this AM and my brother Aaron is on the road as I type. The whole fam in one place! Love it. I will post some pictures. This weekend is going to be so busy with the drive so I probably won't post more than a few snap shots. but I will give a huge update after the drive. hope to see all of you there.

New trick

Well Alivia has been doing something new. She has only been getting up once or maybe twice a night. Sounds like a good deal right...well last night the first time she got up lasted 2 hours and the second lasted almost a hour. I would go back to the 8 to 10 times a night in a second. At least then it was a quick bottle or just a hug and she was fine. I feel a bit out of it today. Naps have been just as bad the last few days also. Yesterday it took over an hour of walking her to get her to sleep and today it took an hour. Crying it out doesn't work either. For one she just gets more and more upset until she gags herself and second she's sick and I just feel way to bad to let her cry. It makes me nervous. So everyone can add to their list getting to sleep. Staying asleep, getting to sleep, sleep in general.

Tomorrow we have immunizations. They are so important now. I mean they were important before but now with the way that her immune system will be after the transplant they are even more important. As is the flu shot. Please pray that she doesn't have any reactions to the shots.

My parents arrive tomorrow night and Friday AM Andrew (my brother) flies in and my other brother Aaron drives here. So excited to have the Allen clan together. They will be such a help with the bone marrow drive Sunday. Don't forget to spread the word.

I have so many amazing stories of peoples generosity in helping to raise funds for the drive. I will share them tomorrow.

Isaac's Pictures...take 3

Dan, Julie and Jude G. (center farside) , Sarah R., Lisa E., and their wonderful friends
Katherine, Dolly and Anna M.
Josh and Becca L. (front), Andy and Sonya L. (back)
Thanks to everyone...there were so many people we didn't get pictures of. Thanks to Will for taking the pictures.

Isaac's Pictures 2

Mickey and Carol
The Heitland and Privitera families
Jeremy and Steph
Keith and Tracy F. and Greg M.
The Minich's

Isaac's Pictures

Andrea, S.D., Diane and Reed the little Queen....Miss Alivia
Angie and Scott S.
Mike and Destiny B., Nicoli and baby Nora
Jenn, Cliff and Noah L. (anyone notice Livi's uncle John in the window?)

blah

Last night was great. We had the fund raiser at Isaac's and it went so well. At one point I think I knew every single person in the resteraunt. Very fun. Thanks to everyone who came out for this. If you went to another location (Hershey or Harrisburgh) or were at Isaac's before we got there (6:15) please leave us a message and say you were there. I was so overwhelmed by all the support. Thanks to everyone who was there. The servers were all saying how nice everyone was too. What a blessing.

Today we headed to Hershey. Count weren't good. Everything went in the wrong direction. Starting Friday we will up the dose of Gleevec. Next Tuesday we will be meeting with the transplant team. Once that happens things will hit warp speed...I think. Probably we will have the spleen removed within a week and enter the hospital for the transplant 2 weeks after that. I'm not completely sure of the time frame but that what we've heard so far. We need so much prayer in the weeks to come. I am terrified. I know this is part of God's plan and I know that he is in control. I'm so scared of the entire process. She has been so happy the last few weeks and I know how hard this next step will be. I'm just glad she doesn't know what's coming.

This has been a long road of ups and downs. I haven't felt like we've been able to be "up" for more than a few days. Mostly its been downs. I'm very tired of all of this. I could use a refresher.

I am going to post some pictures from last night once William sends them to me (hey Will). Again thanks to everyone that was there.

Thanks to the Miller's for dinner and to Mark Miller for one of the sweetest cards we've ever gotten. Thanks to Lisa E. and Patti W. for the toys for the kids. And to Patti W. for the best PJ's ever. I'll post a picture soon and I'm sure you'll all agree.

It's really late

Tonight is one of those nights where my brain isn't tired even though my body is. I was laying in bed and regardless of what I did my mind wouldn't turn off and I was thinking of transplant and getting more and more scared and I realized I should just get out of bed. So I decided to come downstairs and read some of my "beside still waters". As is my habit I just opened to anywhere and started to read. This is what I read.

Intercession Romans 8:26
"Never give up praying, even when Satan suggests that praying is in vain. Pray in his teeth. "Pray without ceasing" (1 Thess. 5:17). If the heavens are brass and your prayers only echoes above your head, pray on! If month after month (sounds familiar) your prayer appears to have miscarried, if you have had no answer, continue to draw close to the Lord. Do not abandon the mercy seat for any reason. If it is a good thing that you have been asking for, and if you are sure that it is according to the divine will, wait, tarry, pray, weep, plead, wrestle, and agonize until you get what you are praying for.
If your heart is cold, do not wait until your heart warms. Pray your soul into heat with the help of the ever-blessed Holy Spirit, who helps in our weakness, who makes intercessions for us with groanings that cannot be uttered (Rom 8:26)
Never cease prayer for any reason. If the philosopher tells you that every sevent is fixed and that prayer cannot possibly change anything, go on praying. If you cannot reply to every difficulty that man suggests, resolve to be obedient to the divine will. "Pray without ceasing". Never, never, never renounce the habit of praying or your confidence in its power."

Maybe I've shared these words before. I'm not really sure. But this is how I want to live my life. I want to constantly be praying...even when things are going wrong. Even when I'm rejoicing that Alivia's counts are improving I need to be praying and thanking God for even the smallest mercy, because I deserve nothing. And yet look at all I have. I am blessed.

We went to the mall today

and Livi got to ride the bus and a few of the other kiddie rides. She loved it. In the past she cried if you put her in one but today she not only wanted to sit in them she wanted them to move. Very cute.

Do You use Pampers

Do you have kids in diapers? Are Pampers your diaper of choice? Do you collect the gifts to grow points? If you use Pampers and don't collect the points and would be willing to give them to me I would love to have them. Whenever you buy a package of diapers look inside the bad and there is a white sticker with 4 lines on it. Just get that out and mail it to me. I will be collecting them till March. I have been collecting them since Alivia was born but I don't have anywhere near the points I need. Or you can e-mail me the code (the last of the 4 lines) if you want. Thanks

Wait...what time is it?

Okay so we are home and have been home for a little while and its only 2! We didn't get a transfusion, and counts were pretty great. Her Red's were UP to 10.5 (highest they've been in ages!) and Platelets went up to 27 (can hardly believe it) and the WBC's stayed pretty much the same... which is good for a kid with a runny nose. So we got to come home. FUnny all that good news and then they slipped in at the end that we need to schedule an appointment with the transplant team. Almost got out with all good news. Oh well. We'll cross that bridge when we come to it. Right?!

So its the weekend and we are going to relax and have a nice weekend.

Please pray for Alivia's cold and for complete healing, for James' work (things are a bit stressful) and for the daughter of one of the nurses at the Hershey Clinic. She is one and had a seizure last night and is in the hospital. Pray for a super quick recovery and no long term affects.

Tomorrow is Friday

In case any of you forgot. I kept having a hard time remember what day it was. Guess I'm used to it being the weekend when my parents are here....or else they usually leave on Thursday so I was all confused. Tomorrow is Friday and we are heading to Hershey for counts. I have a feeling we will need platelets but thats not too bad cause they only take and hour and she will have 2 of her favorite people along...my parents!

The Gleevec has been going well. She doesn't love it but is resigned to taking it which is more than I can ask for. She amazes me all the time.

This weekend will be a rather relaxed one for us and I'm looking forward to some chillin', hangin out fun times. Erin and I are going to go to the movies on Saturday afternoon while Livi naps. Fun. I haven't been to the movies since...I think since Christmas of last year. Now that is pitiful.

Thanks to Lynne Templeton and Krissy Evans for the toys for the treasure box, Vicki Gold for the cute ladybug piggy bank, Holly Rougeaux for the sweet baby doll and blanket (that Livi has been carrying around with her everywhere) and to Gina Plain for dinner tonight (You were right about the bread sticks...so good!)

One last thing...if your name is Bekah Walker (and there is only one of you that I mean) go to friendsofalivia.blogspot.com and e-mail Rachel. You guys live about 10 min apart and you could drive up for the bone marrow drive together and she has a job she wants to ask you to do. I just don't have your e-mail or phone number so I haven't been able to get in touch with you! Thanks

WooHoo

Bracelets have arrived! I'm so excited. I plan on spending the afternoon getting them all organized. So Sunday if you have ordered come and get them. I will be putting the rest in the mail or giving them to my parents. LOLC people you can get yours Sunday too.

We're home

Today's visit went well. Mostly just a lot of waiting. Alivia's WBC's were down to 47! That is the lowest since August and the fastest I have ever seen the counts drop.Her Reds were up because of the transfusion on Friday and her platelets were lower so I'm expecting a transfusion this Friday. We got to see the pediatric dermatologist because Alivia has a rash on her arms. They don't know what it is and gave us some cream. But since it isn't bothering her it isnt' bothering me. I've seen much worse rashes.

We will have the coupons for Isaac's at church on Sunday (Cynthia will have some too) just ask us then. I hopefully can just sent up somewhere and you all can come to me. I should have the bracelets by then also. So if you ordered (and payed) you can pick them up then. Or if you want to order some then you can. Just know that if you order Sunday and you want Navy you won't get them for a bit cause I had to re-order but if you want rainbow swirl you can get them right away. Also if you ordered navy in the last few days you will have to wait till the new shipment comes in. By the way if you ordered purple...you will be getting Navy because they don't have purple anymore.

Thanks to Grace Privitera for dinner last night. So yum. to Hannah, Hope, Faith and Felicity Privitera for the pretty paintings. To Marmie for another card. YOu are the most wonderful Grandma I could ever imagine. and to all the people at Clipper Magazine who donated toys.

So much to say, so little time

I have so much to tell but only about 5 mins. Today is another doc visit day. Its supposed to be just bloodwork so it might be a quick one....or not. But I'm not too stressed.

We had the greatest weekend. Friday night was girls night out with Hollis, Sonya, Denise, Rachel and Erin. Girls, time after time you make me laugh and thrill the night with your silliness. Love you all and can't wait to do it again. Saturday we went to see the space for the bone marrow drive (thanks Andy) and then Rachel, Erin, Hollis, Alivia and I went to Characters Pub (my favorite). Later that night William came over to take Alivia's 18 month pictures...didn't go so well. But we'll just try again. Then we went to dinner with William, Jeremy, Erin, Andy, Sonya and Rachel. After dinner there was a dance dance revalution. (I'm just being silly now) and then everyone came over to our house to sit by the fire. It was so cold out but the fire made it fun. Won't be able to do that much longer. Then Sunday James, Alivia and I went to see the people who make the "Signing Time" videos. Alivia loved it and we loved watching her. I didn't know what she would think but as soon as they walked on stage she started kicking her legs and laughing. Each time they would sing a song she would move her hands all around each other like she was signing then she would sign more each time a song ended. It was about an hour show and then we went to the children's museum. It was so cute and Alivia could do almost all the activites. We got back from Harrisburg (where the show was) around 2 and at 4 John, Will (Mr. Late) and Jeremy came over to watch the Steelers. There was great food (thanks to Erin...and a little bit me), Sean, Denise and the twins came at half time and the Steelers played like they are supposed to play. After we carved designs into pumpkins. I got to use a power drill and that was fun.
It was a great weekend.

Answers to prayers .....Alivia started eating 2 new foods this weekend (pretzels and graham crackers). She has only been getting up 2 or 3 times at night, she's taken a few steps AND she takes the Gleevec like its not big deal!!! Thank God. Her stomach looks a bit smaller to me and that is pretty exciting. We'll be able to tell from her count if things are going well.

I'll write my thanks later when I tell about the doc visit.

We are having a fundraiser at Isaac's deli on Monday night. All you do is go and eat or get take-out from Isaac's and 25% of our bill goes to the bone marrow drive. What a great fund raisers. You get to eat out and help us out. If you want to go or want to hand out tickets (you have to have a ticket) please post your e-mail address (which I will erase) and I'll forward you a copy of the tickets. You can go to the Isaac's in Lancaster, Harrisburgh or Hershey. Feel free to hand out the tickets to anyone you want. The more the merrier

Bone Marrow Drive

Wanted to let everyone know that the date is finally set. We are not supposed to advertise in our community yet but we are just mentioning the date here. It will be Sunday, October 29th from 12-4. So you can head over after church or run home, have lunch and head over after. You must be between the ages of 18 and 60. You really really need to read all the info that Rachel has posted about the drive so click here and then bookmark this pages as there will be more info coming over the next 2 weeks.

Also for anyone in Pittsburgh who wants to be tested you can be tested for free if you donate blood at the central blood bank. And for those in Harrisburg there is a drive being held on Tuesday, October 31st at the Capital and it is fully funded so its free to be tested there also. So many opportunities to get registered. I'm excited that I might know someone who gets to save a life. What an amazing blessing that would be. Thanks to those who have registered already. It means so much.

Last night and other things

I had the best time last night. I got to have a girls night with Sonya, Denise, Rachel, Erin and Hollis. Ladies I haven't had that much fun since the last time we went out. I love spending time with all of you guys. Thanks.

Rachel and I had a conversation about the bone marrow drive fund raisers. So far we aren't doing too hot. All the bracelets that have been bought so far have just payed us back for buying them originally. And there haven't been any corporate sponsors yet. The bone marrow registry won't allow us to start to advertise for the drive until we have enough money in the account to pay for the number of people we hope to test. So if you work for someone, own a company or know of a company that would like to sponsor and get a tax write-off then please, please, please click here and e-mail Rachel for a copy of the letter. If anyone is super blog savy and knows how to post a document so that it can be downloaded from the blog also go and e-mail Rachel. Its pretty confusing and would make life easier if it could just be downloaded. We really need to get all those fund together in the next week. We're not asking for personal donations...just corporate right now. But we definelty need everyone's help to find companies to donate.

More Bracelet info

I got a call from the bracelet people today. Here are a few important facts.
1. All bracelets (1,200 to be exact) will be mailed tomorrow so they will arrive at my house and my dad's house early next week and I'll get them sent out ASAP. I will be handing them out next Sunday at church too.

2. We wont' be in church again this week so if you go to Crossway and want to order please just send us a note and check. Make sure you say exactly what kind and how many you want.

3. I will get your bracelets to you as soon as I get them and as soon as I recieve payment. That way I won't have to chase anyone down for payment afterwards.

4. Thanks so much for ordering them. I am actually all out of Navy. But I still have a lot of rainbow and youth. Hopefully some of you still haven't ordered and want rainbow or youth. That would be great.


Thanks to Josh and Becca Landis for the soup, Carol Landis for the great meal, Pam Burris, John and Linda Garner and Christine Oblender and family for the toys for the kids.

Alivia is doing fine today. We suprised James and brought him lunch. She just loves seeing her daddy midday. There is a big truck and a tractor in the parking lot of his shop and she thought they were pretty great. Last night she didn't keep the Gleevac down. We got most of it in but she ended up throwing up quite a bit. So I think we have to give the anti-nausea meds a little closer to when she takes the meds. Hopefully tonight will go more smoothly.
Please pray for her to sleep a little better (she was up about 6 times last night) and to eat a little more. She really only eats yogurt and bread (not for lack of trying to get her to eat other things). It does make me pretty nervous that she doesn't eat more variety. I try new things all the time. And we try things over and over and still she just spits them out. Also please pray she starts to walk on her own soon. She is completely capable but just isn't brave enough. James and I would both love to have her walking. It would make everyones life a little easier and she would enjoy herself. I also would like her to start walking on her own before we do the transplant because she will probably be even more timid after all that time in the hospital and I would like to avoid extra doctor visits after to get her to walk. Thanks.

Gotta get a flu shot

We have to get flu shots and caught up on immunizations before the transplant. Those were little things we learned yesterday. Guess we'll be heading to the pediatrician too. Crazy. More doctors visits. At least this one is just up the street.

As time has moved along and we are inching closer to a transplant I find myself sad more often. I can just be sitting opening the mail or reading or whatever and I start to get tears in my eyes. I may see a commercial with a healthy baby rolling around and I wish that was us. I hear someone complain about their kids having an attitude or misbehaving and I think I wish that was my biggest worry. I would trade in a moment. I know this is the life God has planned for me but I definetly struggle with it daily. Why us? This question isn't one that anyone can answer for me. I still think half the time I can't believe this is even happening. I just keep expecting to find out that it was all a mistake and my girl is okay. That they have been testing someone elses blood all this time and Livi is actually pefect. Just a dream I know. James and I have decided to try to say all the things we are thankful for each night before we go to sleep. Believe me this is sometimes much harder than it seems. But it reminds me to be thankful and that I have so much more than I deserve already. Here are a few things I am thankful for....
..James..how hard he works and how much he loves us.
..Alivia..she is precious and funny and the sweetest girl I know
..my parents..they have layed down their lives and been on call whenever we need them. They would say there is no where else they would rather be but it still is amazing to me.
..my friends (ladies you know who you are) they keep me sane. They agree with me when I say this situation is horrible. And they laugh with me and cry with me. Oh and some of them sing karoke with me....love it.
..Marmie..she sends Alivia card every single week. They mean more than you'll ever know.
..all the people who make meals. I can't even begin to explain how much that means. I just can't figure out how to cook anymore. It is such a relief not to have to.
..John, Chris, Will and Jeremy L. You guys make me laugh. You love Alivia (and she loves you too). You spend time with James and I (even though we're old and boring)
..Erin..you have become one of my favorite people. I love when you get home from work. I love hearing about your day and I love how Alivia gets so excited when she hears your voice. Thanks for staying with us.
..anyone who has given toys, writen notes to the nurses or bought a bracelet. These little things show me that people care and are reading what I write and praying for Alivia.
..Cynthia..thanks for coming to the hospital and cleaning. I wasn't good at cleaning before this all started and like cooking its not even a thought anymore.
..everyone who prays for Alivia. We pray constantly cause she's our baby but some of you dont' even know her, or us, and still you take time to pray. Thanks

Thanks my thankful list for right now. Oh and I"m thankful that Alivia took her Gleevac again last night. Even if its not working yet it has the possiblity of working and that gives us some hope.

Gotta run my baby is waking up from her nap.

Home...before 3 pm

We actually got out of the hospital before 3 today. That is a miracle and has never happened before. We would have been out even earlier but had to wait on the Okay from the doctor. Her WBC's went back up to 114 but her plateletes and reds stayed pretty stable. We go back on Friday again. Her WBC's went up with hydroxyurea at first too so I wasn't completely suprised. No NG tube today. Hopefully the meds will start working and we will never need one.

Got a message from the wristband people that they don't have purple...so the purple ones will now be navy blue (like Alivia's eyes). Works out, especially since it seems all the husbands are ordering the purple....won't they like the navy blue even more.

Gotta get a ton done before the girl wakes up. I'm ordering more bracelets tomorrow so keep the orders coming. Thanks.

HMC Tuesday

Today we head to the hospital. Alivia took her medicine relatively well the last 2 nights so hopefully we'll find out the cherry syrup is okay for the medicine and we wont' have to get an NG tube. But I never know what to expect from a doctor visit anymore. I would rather do just about anything than go to the hospital today. But this is what is best for my girl.

Thanks to..
..Nora Shank for the beautiful quilt. I'll post some shots of it soon.
..Lisa Allen for toys for the kids
..Milt and Ann Eckman for dinner last night.
..Sonya, Hollis and Erin for a fun girls night out.

Very tired

I'm almost too tired to type but I wanted to say a quick few things before I head to bed.
1. We had a great day today and I'll write all about it tomorrow.
2. We got home from Pittsburgh in 4 hours
3. We got to see Ian, Mary, Devon and Larissa
4. Alivia took all her medicine tonight (she threw it up yesterday) so there is some hope for avoiding the NG tube.
5. We are going to be re-ordering bracelets ALREADY!! Keep the orders coming. (and yes Julie the adult ones will say "Baby Livi" this time)

Please visit friendsofalivia.blogspot.com for all info about the bone marrow drive, including but not limited to coporote sponsorship letters. (thanks Rachel!!!)

Can you tell I'm tired? I feel like I'm not making sense. I have a ton of thank yous and other things to write but I will be a better mommy tomorrow if I go to bed now.

Sitting on Gigi and Grandpa's front porch

Just enjoying her day.

From Indiana

We made it safe and sound to my parents house. James and I got to spend a very romantic anniversary at the clinic and in the car. Not really what romantic dreams are made of but at least we were together.
The day at clinic was much longer than we expected (oh that hospital time gets me!). We arrived around 11. We gave Alivia her last dose of hydroxyurea before we left home. So when we got to clinic we got her port access (she did great as always) and went to have lunch while we waited for the results. There was a lot of confusion about when to give the Gleevac, how, and if we could even get it (insurance still hasn't authorized it yet). So we left for lunch not sure what the rest of the clinic visit would look like. Our docs nurse (who is new) Melissa actually tracked us down in the cafeteria and said that they would have us see our doc and check her liver enzymes because they were elevated for the first time last visit (didn't know that) and if they were any higher then there wouldn't be any Gleevac today. She also mentioned that if Alivia didn't take the meds orally they would put in an NG (think thats what its called) tube...meaning a tube that goes up her nose into her stomach. That way I would dissolve the meds in water and put it through the tube. No one (including all the nurses) thinks this is a good idea for Alivia. She is such a picker...if she can de-access her port and that is a needle then she could easily take the tube out. So we called my parents and James' parents and asked for prayer that we could get the meds down without the tube.
We got back from lunch and got her number. The WBC's had gone back up to 83 (from 74 on Wednesday) but her Reds and plateletes stayed pretty stable. So no need for transfusion. We finally saw our doctor. He was one of only 2 docs in clinic and was so swamped and behind. I think he was having a pretty rough day. We talked and he said that we would try over the weekend to give the Gleevac with this cherry flavored syrup (which we had Alivia taste and she liked)...the only problem being that the cherry syrup might make the meds inaffective. They are going to do a bunch of research and talk to a bunch of pharmisists that might have had to give Gleevac to little kids. So if on Monday they find that the cherry syrup isn't good or Alivia won't take it wit the cherry syrup we are getting the tube.
Then we got to wait and wait and wait for the meds to be ready. The 4 Diamonds fund finally authorized payment (cause insurance still hasn't) and then it took forever for the pharmacy to get it ready (cause counting out pills is very hard). By this time Alivia was so tired and ready for a bottle. I really wanted to try to give her the Gleevac before we left clinic so that we wouldn't have to do it later and so that the nurses could help out a bit.
Finally the meds arrived and Joanne and Holly helped us get all ready (pill crusher, cherry syrup, spoon, medicine cup, chemo gloves... the works). I crushed the pill then gave Alivia a spoonful of just the cherry syrup. She gulped it down. then we mixed in the crushed meds and spooned it into her mouth. She made a little face but took it all. We even had to clean the medicine cup with more cherry syrup and she ate that too. I was so excited, thankful and relieved. We got on the road around 4 and were home by about 7. Alivia did great on the car ride..even though she only slept for about the first 1 and 1/2 hours. She is the sweetest.

Please pray that the cherry syrup doesn't make the medicine inaffective.
Pray that the Gleevac does only good things to Alivia
Pray for complete healing WITHOUT a transplant.
Pray for peace for James and I. We have had some people share some horrible, sad, depressing stories about transplant and I know for me it is so discouraging. I need so much to only hear good stories right now. All others just eat at me.

5 Years

Five years ago today I was Mrs. James Haughery for the very first time. I had been waiting for that moment for almost a year...actually for my whole life. I wanted to be married and always dreamed about being married and here I was finally married. Five years has gone by in the blink of an eye. We have been through some of the hardest things life can throw at us. Its all just brought us closer.

I love my James. I wouldn't want to spend my life with anyone else. He is the greatest. He works harder than anyone I know (often 70- 80 hours a week), He takes care of me (even when I'm freaking out about something), he loves and adores Alivia as much as I do (and thats alot) and he makes me laugh. There is no one else I want to dance in the kitchen with, sit by a fire and talk with, grow old and gray and crotchety with. Even on my worse day he loves me and that is saying a lot cause I've been known to be a bit dramatic.

James....I love you and only you. I promise to love you through good and bad, sickness and health, forsaking all others. God has blessed me so richly with your love. Thanks for being mine.

Cute Photo

Thought we could use a cute photo after this long, hard week. And its not even over yet. It feels like we've been at the docs constantly. Tomorrow is another visit. Hopefully just to get counts and figure out a better way to take the Gleevac

I hate Gleevac

We gave Alivia her meds again this morning and she has been gagging and throwing up since. Its not a side affect from the meds its the taste of the meds. They have a coating on them that has iron in it and it tastes horrid. but they can't remove the coating because the pills are light sensitive. So poor Livi is puking we are all trying not to get it on us cause its got the meds in it and they arent' good to get on your skin.

I hate Gleevac.

Doc visit

Today went okay. It was a long day (as all doc visits seem to be). We got to the hospital at 9 and went straight to the cardiology department. Alivia had an EKG and Echocardiogram. Figuring out the timing of the morning was the hardest thing. I had to give her the hydroxyurea one hour after she ate, she woke up at 7, it takes about 35 min to get to hershey, we had to apply the numbing cream, which takes one hour to work, she can't eat for 2 hours after the medicine, the numbing cream wears off after 2 or 3 hours. Lots of remembering what comes next and hoping that each appointment went exactly as planned. We checked in and I gave her the hydroxyurea and they paged the Echo-tech. It took a while for him to get there and he had us go to the room. But he wasn't even ready and going to the room just made her freak out. So we walked around in the hall to calm her down. Then he was finally ready. She cried in the beginning then my dad finally got her to laugh and calm down but it took so long that she got freaked out again and started crying towards the end. He "finished" and reviewed his pictures and realized he didn't have one that he needed so we had to do more (even though we had finally gotten Livi calmed by saying we were all done....opps). After one more pic we were done. We took turns walking her around the north lobby since they didn't even page the EKG tech till the first tech was done (makes no sense to me...why not page them both at the same time and have it all set up for when one is done? Oh well) The EKG was much better because A) it was a women and B) she got to stay in her stroller. After all heart related activities we headed to the clinic. She did a great job being weighed, measured, blood pressured (made up a word) and temperatured. By then it was around 11 and she was getting hungry. But they had said that we should have her eat right after the Gleevac and that wasn't going to happen till around 12 cause I had to learn how to prepare it from the pharmasist. So we got her port accessed and blood drawn (it worked the first time...thank God!) then saw our doc. then he and I talked about the meds and the million and one possible side affects. They have to tell you every possibility but its still really really scary to think of her having side affects. then the pharmasist showed up and showed me how to do the medicine. In the mean time Alivia fell asleep. So we had to wake her up to take the meds. It tastes terrible according to everyone. She did great for the first little bit but then got a taste and started to scream. It was terrible. She was chocking and trying not to swallow it but we had to make her do it. I hated doing that to her. And I"m sure I'll hate it tomorrow too. She will have to take it once a day everyday. And it doesn't come in suspension so I have to crush the pills and dissolve them in liquid (only water or apple juice) I might try some other things...like putting it in yogurt or icing. (please no suggestions for what to put it in...believe me we've thought of them all)

We couldnt' all go to lunch cause they wanted to keep a close eye on her and apparently the cafeteria is too far away. So we feed Alivia in the clinic then my dad and I went to lunch and left Alivia with the "singing Grannies". Hear they put on quite a show. Then dad and I got back and relieved the "grannies" so they could go eat. While they were gone, Holly came in and told us we could go home. So we got the port de-accessed and my dad went to get all the prescriptions...but someone had forgotten to call the Gleevac in so my dad stayed while my mom and I took Alivia home. She was asleep before we even left the parking lot. She is such a trooper. Even when we are doing the scary stuff she still tries to be happy. And as long as no one "scary" is around she's happy Livi. I love that girl so much

Thanks to Loretta Bueche for dinner the other night, Ruth Ann Millen for the sweet and encouraging card, Betsy, Greg and Zach Camp for the pig and books, Jill Piper for her generous gift and Beth Young for the toys for the kids.

Also thanks to everyone that has ordered a bracelet. There have been some requests for adult bracelets that say Baby Livi. AT this time we have a ton of the other ones left but if we have to order again I will be sure to have the adult ones say Baby Livi too. Also thanks to everyone that has sent their money already. It would be great if you live far from me and I have to ship to you and there are a few people from your area that have ordered bracelets if you want to all go together and get a padded envelope for me to send the bracelets in. Otherwise, please include a few extra dollars for stamps/envelopes if your bracelets need to be shipped.

Please pray for healing
Pray that we find a way to give Alivia the meds that isn't horrible
pray that she gets some sleep...one of the possible side affects is insomnia which just made me laugh when I saw it.
continue to pray for Ian. Yesterday the doctors were not encouraging about his prognosis..but today they are a bit more guarded. There have been a few signs of some brain activity and so they are saying he took a small step forward. That means he needs even more prayer. Pray for him, his parents, brothers, sister and girlfriend.

Hershey tomorrow.

Wanted to let everyone know to send the money for bracelets to me. Even if we go to church together because we wont' be in church the next two weeks. Thanks. '

Tomorrow is another day at the hospital. We have and Echocardiogram and EKG at 9 am (Going to have to wake a sleeping baby I bet). Then we will head over and get the first dose of Gleevace (I've been spelling wrong and will probably continue to do so but thought I would try to spell better for today). It will have to be crushed and put into something which is very hard since she doesn't like much. I am praying it goes well. Also we aren't sure what the timing will be...if you have to wait to eat before or after taking it. They aren't sure if she will have any reaction to it because she is the youngest to ever take it. So we will spend the day in the hospital to watch her. If all goes well we will head home tomorrow evening.

Please pray for a good EKG and Echo (she hates these tests and usually flips out the entire time)
Pray that she is able to take the medicine without any problem.
Pray for no reaction to the medicine.
pray that the medicine shrinks her spleen and lowers her white cell count.
Pray for the perfect bone marrow donor.
Pray for the Murphy family.

Money for Bracelets

If you for some reason didn't write down my address then send your e-mail with your order and I will send my address to you. Thanks to all who have ordered so far. Please spread the word to anyone you think might want to order a bracelet. My dad will be buying a large number for those who work with him. If you want to buy one from him instead of through the blog please let him know as soon as you can. The easiest way would be to write down exactly what you want (ie. Number, size and color)

166 bracelets sold already. There are going to be other fund raisers going on as well. If you work for a company that often gives to charities and might want to donate please let me know and my friend Rachel will send out the letter she has composed. Donations from companies are tax deductable.

Thanks again.

Our Friend Ian

I went to Lord of Life Church in Indiana, PA from the time I was 3 until I got married. One of my families close friends were and still are the Murphy's, my mom and Mary are good friends and Aaron (my youngest brother) grew up with Ian (the Murphy's oldest son). Yesterday morning Ian was in a seriously bad car accident just outside of Indiana. He is in a hospital in Pittsburgh and is still very critical. He needs your prayers desperatly right now. Here are the things that they asked Lord of Life members to pray for this morning....that he would stabilize, that all the bleeding would stop, that his brain wouldn't swell, that the fractures in his neck, knee, arms and ribs would heal, that there would be no brain damage, paralasis or central nervous system damage. Please pray for Ian, his parents, 3 little brothers, little sister and his girlfriend.

Having a sick/hurt child was never something I wanted to have in commen with anyone. My mothers heart breaks for Mary. I have been in the hospital with Alivia not sure what is next and I know the sleeplessness, fear, and grief. I was able to pray with Alivia before bed that Ian would recover completely.

I have a million thanks to catch up on. First and foremost I would like to thank all who have said they would buy bracelets. It is amazing. I am going to post my mailing address tomorrow and it will be up on the blog for the entire day. Please copy it down if you need to send me a check as I will delete the message at the end of the day. Each time I see a bracelet I will know that you are praying for my little girl and are reminded of her often. That is the greatest part of this whole thing. Please keep up the requests for bracelets.

Thanks to Lois (one of the nurses at Hershey) for the sweet card. To Andy and Amy K. for the words of encouragement. To Maryann Plesnicher for the gift (the most helpful gift you can send right now!) and to Lori Felizzi for her card.

Also thanks to Sonya L, Lori R., Cathy Schloemer and Irene R. for the toys for the kids. So much fun taking them with us to the hospital.

Fund Raiser

We have figured out our first fund raiser for the bone marrow drive. (I know I'm supposed to be letting Rachel handle all of this but I need something to do.) James and I ordered bracelets today. They are similar to the Yellow LiveStrong bracelets to support cancer.

Here are the options.
For Adults they all say "Alivia Rachel Haughery" and come in either purple or rainbow swirl (my personal favorite)
For Youth (2-13) they all say "Baby Livi" (thanks Samual, Grace and Eden for this nickname!) and come in rainbow swirl only.

We ordered 100 of each. If you get your address to me I will get them to you in the next 2 weeks (once we get them). If I have you address already just post how many, and colors. If I dont' have you address, post how many, what color and your address. I will delete all comments that have addresses after I get them so your address won't be on the blog for all to see. I will check the blog frequently so your address wont' be up for long at all. Promise.

The bracelets are $5 each and all proceeds will go to the bone marrow drive. Thanks. If we sell out then we will order more. The bracelets will arrive at our home early to mid next week.

My parents and I can deliver ones to people who live in Lancaster or Indiana and people have asked if they can send checks....that would be fine. Make them out to me and I will get them into the account.