From Pa

On behalf of James, Emily, and all of our families we would like to thank all who attended our Livi Memorial, Saturday, July 28 in Indiana. You helped make this a memorable evening for us. Please continue to pray for James and Emily as they are as desperate for your prayers now as they were when praying for sweet Alivia.

Many have asked our family where they could donate in honor of our precious little Livi. We greatly benefited from The Four Diamonds Fund at the Milton S. Hershey Medical Center. For information about The Four Diamonds Fund go to www.hmc.psu.edu/fourdiamonds/ and read about the foundation and how you may donate. After reading The Four Diamonds Fund go to the sidebar and click Supporting the Four Diamonds Fund. James and Emily will receive a card indicating that a donation was made by you on behalf of Livi.

If you have not yet gotten the chance to please consider becoming a bone marrow donor. Getting registered is as easy as swabbing the inside of your cheek but the actual donation could save a life. Also if you are pregnant please consider donating your cord blood to the registry. It is free and will be used to help a child. Go to marrow.org for more information.

Many of you have also asked how you can help James and Emily. First and foremost, as I mentioned above, please pray for them. Also, I would humbly ask that you consider a monetary gift to them. They would not ask themselves, but a loving Pa and Gigi can. James has worked tirelessly for months renovating their home for Livi's homecoming, and they could use your help. Send it to James and Emily Haughery, PO Box 374, Brownstown, PA 17508 Thank you, Pa

Memorial Info

In loving memory of our precious little Livi, there will be an open house on Saturday July 28 from 6:00 to 9:00 in the Indiana Junior High School auditorium. All family friends and well wishers are welcome. Plan to be there at 7:00 as the family will be sharing some fun Livi memories. Starting at 6:00 and immediately following the sharing time there will be an opportunity to meet the most courageous, loving parents in the world. Looking forward to seeing you there. Livi's Pa

Indiana Memorial

We are currently planning to have a memorial service/reception in Indiana on Saturday, July 28th from 6-9. The location details are not final yet so please check back early next week.


Also the family has requested if you post a comment to please sign your name. Thank you

Information

The viewing for Alivia will be held Sunday, July 8th from 6-8 and Monday, July 9th from 2-4 at the Charles Snyder Funeral Home (3110 Lititz Pike Lancaster, PA)

The funeral will be held Tuesday, July 10th at 10:30 AM at Westminster Presbyterian Church ( 2151 Oregon Pike, Lancaster, PA)

There will be a private burial service.

There will be a reception following the service at Westminster Presbyterian Church for all who attend the funeral.

Day +118 part 3

On March 20th, 2005 the Lord blessed us with the baby we had waited so long to have. She was chubby and loud and the best thing we have ever done. Today, July 6th, 2007 at 2:45 she want home to be with the Lord.


We are undone.

Day +118 part 2

We had our final conversation with the doctors a little bit ago. At this point it is unfair to continue to force her little body to try to work. We will be ending all life support and getting to hold her one last time. Please pray that it will be peaceful, that she won't feel pain and that we will be able to handle this. I love my girl with all my heart.

Day +118 (part 1)

I have a feeling I will post throughout the day..it gives me something to do when I feel helpless. I only saw her breifly so far today (didn't go to bed till after 3:30 so I am planning on taking a nap). They are having a hard time keeping her oxygen level up. I didn't get a chance to talk to the doctor. They don't do rounds till anywhere between 9 and 12.

This is a strange way to do this but there are some people who it would be nice to see and so I"m going to post your names. If you are on this list and can make it up to visit sometime in the next few days (friday, saturday, sunday, monday) that would be nice. Know we might not see much of each other but just knowing you were here would be nice. There are tons I know who would like to come visit I know.

Corey and Kathy Booker
Scott and Ang Stolzfus
Dwayne and Tina Lapp
Lyndon and Jamie Sentz
Josh and Bekah Landis
Vic and April Spinetti
Leslie and Jeff Yoder
Andy and Sonya Long
Josh and Jess Stoppard
Brent and Christine Davis
Jason and Darcy Smith
Jon and Kelly Christman
Sipe and Danielle
Jacob Campbell
Neil and Jess Smart
Joe and Kelly Walker (I know you were here last night Joe but if you want to come again feel free. It ment so much that you were here.)
Rachel Kennedy
Briana and Lawrence Almengore
Mark, Kristi and Beth Altrogge
Erin Wallwork
Ryan and Hollis Mellinger
Andy and Amy Knutsen
Leslie Malito
Any and All Allen family members
Any and all Haughery family members


Know if you have even the slightest cold or have been around someone with the slightest cold coming wouldn't be a good idea. Please don't come right now if you are not on this list. This may not be a complete list. Dont' everyone come tonight. I know that its friday night and might be easy to all come but over the next few days it would be nice to have visitors. Feel free to e-mail me or call my cell phone to say when you'll arrive. I may not answer so just leave a message.

Day +117

Livi is currently being put on a ventilator in the PICU. Today her breathing just got worse and worse. It isn't a lung thing but instead because her liver is huge and pressing on her lungs. Also her throat is constricted.

She will be on for anywhere from 1 to 2 weeks. They said we will know within the first week whether or not she is going to make it. She will get chemo and rituxin and we will continue to cut her immune suppression. If it is going to take care of the lymphoma we will know shortly. Otherwise she will not make it.

Day +115

Today was rough...rough, rough, rough. I spent a large amount of time crying. It started with little to no sleep last night and got worse as the day progressed.

Last night Alivia had a fever. Not a strange thing for a transplant patient. Only problem is she is already on every antibiotic and anti fungal. All her blood cultures have been negative for weeks so its nothing bacterial. Throughout the night and day her breathing was fast and her fever came and went. She hasn't thrown up since yesterday but is frequently gagging on the drainage from her nose. She is so tired from not much sleep but can't really seem to get comfortable. There were nurses and docs in and out all day checking on her resporation rate. We ended up testing her blood gas. The test was to see how much carbon dioxide was in her blood. If the level is high that means her lungs aren't able to clear the carbon dioxide which is a clear sign of respitory failure. If she goes into respitory failure then she would have to go the the intesive care unit and be put on a ventilator. If that happens chances are she would never come off. To keep her on the ventilator would require steriods and that is what we are trying to get out of her system so she can fight the lymphoma. It is a thin line we are walking. Thankfully the test came back showing it wasn't carbon dioxide but instead she was acidodic (don't know how to spell it) meaning her PH is compensating for a part of her body that is making too much acid (or something). Too much for me to understand. In the time we were waiting for the results to come back we had a very serious talk with one of the doc's (one of the one's we really like) about what to do if she stops breathing, whether or not we would resusitate, when is enough enough and so on. I could hardly breath throughout the talk. James and I have some serious things to discuss. She is still holding her own but as the docs have said we are on the tip of a two edged sword. Tomorrow we will get the results back from Mondays EBV test. If the EBV level is up from last week then that means they will have to figure out something new to do because the chemo must not be working.

We need prayer...we need a miracle...we are desperate.

Day +113

The last few days have continued to be a roller coaster. Our doc spent the entire day friday trying to figure out what woud be the absolute best route to take in treating the lymphoma. She talked to experts across the country and they all said the same thing....get rid of the immune suppression and hopefully Alivia's T-cells will take over again and she will get better. we agreed with the her. The only reason for the immune suppression is to keep the GVHD at bay...the GVHD has been "silent" for over a month now. And we have clinical proof that there isn't any (the endoscopy and colonoscopy) so as our doc said "we can't be afraid of the thing she doesn't have (GVHD), we need to be afraid of the thing she does have"

So over the next week or so we will be completely off of immune supression. That means no more steriods or cyclosporin. THat means her dark eyebrows will go away, she will not be puffy and hopefully her little T-cells will get smart and help her get better.

She did have another dose of chemo yesterday. No rituxin (which is the 10 hour infusion) and no pherisis. Her IGM is still going up slowly but her Viscosity is coming down... doens't make a whole lot of sense but thats okay. Her marrow made platelets on its own for the first time in a long time Friday...then back down yesterday with the chemo and back up a bit today. MAking platelets is a good sign. There will be a lot of watching and waiting over the next few weeks.

Please pray the GVHD continues to stay silent (a flare at this point would be fatal). Prya that her stomach heals enough for feeds. Pray that her t-cells become EBV specific and get rid of the lymphoma. Pray for healing.

Thanks to
the Mike's for the magnet games, stickers (which she used completely already), the Starbucks and Visa cards. You guys are amazing.
Jude Garner for the card
Julie and Dan Garnder for cleaning. Hear it looks nice
Maryann Kisic for the stickers
Marmie...Livi loves the picture of you and Elmo. She looks and it and says Elmo and then points to you and we ask is that Marmie? and she says "yea"
Rick and Deb Gilgore for both of the cards
Sue Forry for the car
GIna Bryant for the stickers
Joe Capp for the gift card and stickers.

We are constantly overwhlemed by the practical love we are shown. Thanks everyone.