Day 3 of Hospitals.

I feel like we live in the hospital already. We spent 3 of the longest days in the hospital this week, capped off with today. Got to Hershey around 11 and got home at 6:30. Alivia had both reds and plateletes. Thats 4+ hours of tranfusion. She did such a great job. We are all bone weary.

Thanks to Jim and Heather Rice for the kid bible, Geoff and Karla Sensenig for the cute fall decoration (which Livi has taken apart completely), Christi Carnahan and family for the stickers, book and coloring paper, The Williams family for the super generous gift certificate to Panera and Cold Stone (can't wait!), to my parents for doing so much over the last few days. And to Suzanne (the nurse at Hershey) for sacrificing her evening and staying late.

The BigWig

Well we are FINALLY back from Hopkins (its almost 8). We left our house at 10 this morning. Had a nice lunch in Fells Point and then headed over to Johns Hopkins. We got all checked in, weighed and measured (which always makes me laugh when we just got those done 3 days ago...did she gain more than an ounce? is she suddenly 3 inches longer? what are we really measuring?). It was a bit more traumatic than gettine measured at Hershey since she didn't know the nurses. She cried and didn't like it at all but was a big trouper. Then we waited in the waiting room. After a bit we meet the Bigwigs Fellow (next step after a residency for doctors). She was very kind and knowledgable. She did the preliminary eval and got history. Then we went back out to the waiting area. After a bit the BigWig himself came out. Not what I expected at all. I thought "world renowned expert= stuffy, clinical, withdrawn. NOT AT ALL. He was so kind and friendly. He tried really hard to make Livi comfortable and she didn't cry. After he examined her we took her out the waiting area so my mom and Briana Almengore (who was kind enough to be our tour guide for the day) could walk her in her stroller while she took a nap and my dad, Bill and Cynthia could join James, the Bigwig and I in the conference room. He did a great job of explaining everything (all the kinds of leukemia, the different treatments and the rarity of what Alivia has) He said that this was probably there before she was even born. Not that she was sick then but that it was just waiting to happen. He said that Glevace might help her to keep her spleen but won't ever cure her and the only cure is transplant. He thinks we should do the transplant as soon as we can. The longer we wait the more chance that her lungs, heart or liver will start to be affected negatively and will make the tranplant even harder. The list of deadly things was overwhelming. Even getting the spleen removed could be deadly. The list of possible complications is overwhelming. She may have seizures from the chemo, it may lower her IQ forever, she probably won't grow as big as she would have, there will be a higher risk of developing other leukemias down the road, she will probably have fertility problems. The list of scary is long but the other option is she will definetly die from this disease. So in 4-8 weeks we wil be having a transplant. It will be at least 4-6 weeks in the hospital and her immune system will take up to a year to recover.

I am urging everyone who can to get registered to donate bone marrow. Go to marrow.org ASAP. We will try to get the bone marrow drive together but we might not have enough time to do it before she needs a transplant and we need to find the most perfect match. Maybe its you. Maybe you will get to save someone elses life. Or maybe you'll never even get called. but what if you get to save my babies life. Please sign up today.

We are heading to Hershey tomorrow for counts and maybe a transfusion. It would be nice to get to come home early but no expectations here.

Please pray for all of us. This is the scariest thing I have ever faced by about a million times. Pray for a perfect match, that the Glevace works and she won't have to have her spleen removed, that she makes it through all of this.

I'll write my thanks for today next time I post. Just can't write anymore now.

No New News

Tomorrow is the big trip to Hopkins. I dont' want to think about it. So instead I'm just going to write a list of thank you's. We have been overwhelmed by the generosity of people. The toys are pouring in and it is so fun to look through all of them. I can imagine certian kids that we've gotten to know liking certian toys. You have no idea how much it brightens there days. I'm going to have to call and warn them about how many toys we are bringing. The treasure chest will be full for a while. Its also great because if they get bigger toys they give them out for birthdays. So if you haven't bought toys and are thinking of spending a few bucks you might as well buy one bigger nice toy. The toy chest is going to be overflowing for a while so some bigger toys would be great too. (by bigger I mean like $15- $20 toys)

Here are all the people who added to the gifts today.
Aunt Kathy- sweet fleece hats.
Staff at Clipper Magazine- Huge box of toys
Christi Carnahan- More toys than one person should ever contribute. Your generosity blew me away! (thank Colin too for his sweet prayer for Alivia's doctors!!)
Amy and David Fideli- sweet card for me and toys for the kids
Dawn Lingenfelter- Stuffed Animals (especially like the football bear)
Deb Bartek- toys for the kids
Chris and Stephanie Freeman- toys for the kids
Erica Aikens- card for me and toys for the kids
Joni Cairns-toys for the kids
Heather Rice- toys for the kids
Mary Ann Kisic- card for me, stickers for Alivia and a birthday toy for the hospital
There are also 2 presents for Alivia but she is asleep and won't open them till tomorrow so I'll add them to the thank you list then.

Alivia saw her first parade tonight. It was so fun. She loved all the noise, animals, bands, big trucks, and dancers. She was tapping her toes, directing the bands and wiggling her little bottom. Thanks to the Spinetti's for inviting us over. We couldn't have had a better evening.

Tomorrow will be a very long day. We are planning on leaving at 10 so that we can eat lunch somewhere down there. Our appointment isn't till 2, but we have to arrive at the clinic at 1:30. Because of the way Alivia's medicine is she isn't allowed to eat for one hour before she takes it and 2 hours after. So she can't eat before we leave. Then we've heard that parking is super tricky. Luckily Briana A. will be meeting us there and she knows the ropes. Bri is the mother of twins (one of which has Sturges-Weber Syndrome) and they go to Hopkins very frequently. She is also pregnant with her 3rd...Thanks for laying down your life tomorrow for us Bri. It is so good to know we'll have you as a guide and just get to see you. Till tomorrow.

Shocked

This morning I got a call from Johns Hopkins saying they had an appointment scheduled for us for October 12th...deep breath. Okay I thought that is 2 weeks to get my head and heart ready for whatever the bigwig will say. So we went about our day and I put it in the back of my mind and didn't let myself dwell on it. We went to a nice lunch with James and ran to WalMart. Got home, realized I had washed and dried a load of laundry without detergent so re-washed it, got Livi down for nap and sat down to relax for a bit...when the phone rang. It was the assistant from Hopkins calling to ask if we could make it THIS Thursday! ***SHOCK*** Not was I expected from my day. And it all hit me rather hard. I know this is the best thing for Alivia. We need to hear what he'll say and all but its also really scary. EVeryone fully expects him to recommend bone marrow transplant and when he does then it will begin the clock ticking towards a transplant. I could almost pretend that this wasn't all going on when we were still waiting to here. This is just another dose of reality for me. I'm so tired of this reality. I'm so tired of this road. I feel numb half the time and sad the rest of the time.

Pray for Alivia. This is going to be a week full of doctors poking and proding. We will either be going to Hershey tomorrow or Friday to get counts and maybe a transfusion. Personally I want to go and get it over with tomorrow so we could have 3 whole days without a doc visit. But what I want has nothing to do with what will or wont' happen.

Thanks to everyone that is fasting and praying. This is turning out to be the perfect week for it. We can use all the prayer we can get.

yet again

We realized today that it doesn't matter if we are just going to the hospital for counts or a "quick trip" that we will always be there for hours and hours and hours. We got there around 11 and got Alivia's port accessed right away but the blood wouldn't come out. They tried for 20 min and still nothing. They tried a ton of flushes and still nothing. So they put in this medicine that is supposed to de-gunk the tube. Well it just sits in the tube and then you try again after 30 min...still nothing. So we went to lunch (Livi was so hungry by this time) and came back. After having the meds in her port for 2 hours it finally gave blood. Then it took quite a while for the counts to come back. And they weren't great. The Reds held stable, and the plateletes were up to 27 (they should have been more since she just had a tranfusion last thursday) and the WBC's went up to 140 (They were 133 last thursday). Not a horrible jump but still a jump in the wrong direction. All in all a pretty discouraging day. We'll go again on Thursday and hopefully talk with our doctor then. He is traveling right now. We saw the same female doc that we saw last week that Alivia really likes. She is the head of the department and will be our transplant doc if we get one. I really like her. She said she doesnt' think we should start Glevac unless we have a plan for the future set up (ie when we'll have the transplant). I appreciated that she made that statement. Its really helpful when docs take clear stands on what they feel will work to heal Alivia...because I sure dont' know what to do.

Alivia didn't sleep well at all last night. WE had a few pretty good nights in a row (only up 2 or 3 times) but last night she was up about 8 times. Lack of sleep just makes the doctor visits so much harder for me.


Thanks to Cynthia for coming with us again.
Thanks to Cathy Schoelmer for the gifts for the kids.

A big list of thanks

Thanks to the Malito's for the super generous gift card. We are going to use part of it tonight since we're heading to Hershey in the AM.

Thanks to April Stolzfus for the gifts for the Kids.

Thanks to Will and Jeremy for being so cool. You guys are the best to hang out with and make me laugh. Thanks for being so sweet to Alivia (she likes you guys a lot too...I mean you are allowed to sit where ever you want when you come over...that is big!) Don't ever, ever, ever stop coming over and being the amazing guys you are. We love you both.

Thanks to Rachel for getting on the ball with planning the bone marrow drive. I can't even believe how much she has done already! Also thanks to Sonya, Kelly, Holly and Leslie for being willing to be on the committee to help plan it. Ladies it means more than you'll ever know.

Thanks to Erin for giving up her plans and staying with us a little longer. It has been such a blessing having Erin live here. The original plan was that she would move out by the end of September. As the end of Sept. started creeping up on us I started to get more and more sad that she would be leaving. Alivia has even started sitting on her lap..so she would have been sad too. So we asked her to pray (and talk to her parents) about staying longer and she did and she told me last night that she will. THANKS!!!! Our house would have been quite a bit sad and lonely without you!

Tomorrow we have a doc visit in Hershey...well actually its just for counts. But it might be longer if she needs any blood. We would love to just come home. Also this week they want to start Glevace and since Alivia would be the youngest to get it (ever!) they might admit us for observation. Which means a sleepless night for me, Alivia and whoever is at the hospital with us. Not excited about it but if it will keep her safe then we're all in.

Continue to pray for healing. A lot of people in our church are going to fast next Saturday evening to Sunday evening and concentrate on praying for healing for Alivia. They will also be praying for her during church. It would be great if anyone else wanted to join in. Thanks.

No catchy title

Today was yet another day that I would like to never live again...too bad I'll get to next Monday and Thursday. We got to the hospital at 10. Got a blood draw and went right to get an X-ray. Alivia hates X-rays...maybe the most of all. She hates being stretched and pressed against the cold plates and I hate watching it. When it was over she wanted the vests to be hung up ASAP and wanted us out the door. Thankfully the first ones were fine. Sometimes if she moves during the X-ray we have to do it again. Just more torture. She had big crocidle tears streaming down her face. I didn't grab her and run screaming from the room but I wanted to. Then we went back to the office and saw the same doc we saw on Monday. She is really nice. She said Alivia's x-rays looked good just everything is compressed from the enlarged sleen. Alivia's WBC's came down to 133, her Reds were pretty good (9.7) and she needed a platelete transfusion. She also told us that she will be our transplant doctor when the time comes. Funny...I didn't run screaming from the room then either...but my brain sort of started choking. She gave us a time frame. Once we get to Hopkins and get the final word from the big wig then 6 weeks after that we will have the transplant. Now if you are like me you start doing the math. We are supposed to see the bigwig within the next week or two. So if you at 2 weeks today then another 6 weeks you get the middle/end of November. That means (for all those who's brains work like mine) that without a miracle we will spend James'birthday (Nov. 20), Thanksgiving, My birthday (Dec. 19th) and Christmas in the hospital. How is this my life? How is this even possible? So they will remove Alivia's spleen (this is my baby she's talking about!!!) change her mediport over to a broviac (which is the tubes that hang out of the body) and then start the massive (possibly lethal) doses of chemo. How do people calmly talk about all of these things? I did it today and I just felt numb. In fact till I started writing this I have been in a haze. Just getting by, just doing what I can for Alivia.

Then we got our transfusion (take 1 hour) towards the end Livi started to itch her neck and they realize she was getting hives so they gave her IV benadryl. She was completely asleep in just a few minutes. We finally got in the car around 4:00 and arrived home around 5. How much can one family take.

The only good thing today was taking in the toys. One little girl opened the toy chest (which was stuffed!) and it took her breath away she was so excited.
Thanks to Aunt Joanne for the toys...we will take them with us next week (minus one kazoo...Alivia had one and she loved it but it broke and we haven't been able to find one. So that was perfect..thanks!!) Thanks to Linda K. for the gift for me and the toys. Thanks to Julie and Dan for dinner tonight.

I'm drained, sad and so tired of this whole thing. We need miracle. NOW. Not later. Please God, Please

I spent a large part of my day on the phone with people from the national bone marrow registry. No... we haven't been told that we have to have a transplant but I need something to do and in case Alivia does need one I want to be prepared. So I got all the info on holding a bone marrow drive. My friend Rachel (one of the greatest organizer I know) is going to head up the committee to plan one. Even if we never have to have one I want to add to the registry so other families who need help can find it. I guess that is the first thing I learned today. If they test you it won't just be for Alivia. It is just too expensive to test for individuals. If they did that for everyone that is all they would be doing and it wouldn't be productive. So if you want to get tested you must realize that you will be added to the national registry and you may get called to donate for someone else. If you are tested you will recieve a card and you will be eligible to donate till you are 60. So its a big commitment. But if it could save a life why wouldnt' you want to. And it is a 1 in 20,000 chance you will match anyone. Getting tested isn't a big deal though. All you do is fill out a health form and get your check swabbed.

If you aren't from the Lancaster Area and want to donate on your own please click HERE and they will send you the info to get registered.

Tomorrow is another doc visit. We will do counts,see the doc and have a chest X-ray. I don't know if we'll have a transfusion. I don't really feel like talking or dwelling on it right now. Today was good was good and I'm going to go spend the rest of my evening with my family. I'll write when we get home tomorrow.

Pray that we never, ever, ever need to have a bone marrow transplant.

Preliminary info

Please click HERE to find info about becoming a bone marrow donor. We are not sure if Alivia is going to need this or not but even if she doesn't it isn't a huge sacrifice if you could save a live. To get registered you just have to give a blood sample and if you do match you take a med for about a week to build up your marrow then they do the same thing they do to Alivia for her biopsy and you can either have local anestheia or go under. You have to be between the ages of 18 and 80. Also anyone pregnant who wants to donate their cord blood can do so. Check it out. Its so worth doing. As soon as we are through this whole situation I am going to get registered first thing. And the odds are you won't ever get called. I read on another families site that they have tested over 7,000 people and only 10 have been matches (none for their child yet!) Can't imagine having to wait for a long time to find a match if we need one. The whole thing is hard enough without that added twist. Just a thought

Bad day...good ending

This face pretty much sums up our day. It was a long, hard day. Alivia and I got to the hospital around 10:30 got the blood draw done and went for a walk. ON the way back Cynthia walked around the corner to meet us (Thank GOD!!) which I wasn't expecting...thanks for being our friendly face today Cynthia. We walked together to the clinic and got her numbers...which weren't good. The reds were down to 7.7 so we had to have a transfusion. And the WBC's were up to 154. Not good. We ended up seeing another doctor (not ours since he wasn't in clinic today). Alivia didn't even fuss (maybe cause the doc is a female and thus not scary in Alivia's mind). Then we had lunch while we waited for the blood to get there for the transfusion. In talking to people throughout the day I got the impression that everyone assumes we are having a transplant after we go to Hopkins. That was a hard thing to realize. I had a good cry in the hall on the way to lunch. I was much more tired today than I have been in a while. I felt like I was ready to cry almost all day. The blood got there (finally) and the got her all hooked up but she kept playing with the port and ended up pulling it out. Of course there was blood all over (from the IV bag...but still really scary looking). So she had to be re-accessed. They sprayed stuff on that "freezes" the area (numbs it). Livi hated it and was freaking out and I had to hold her down. It was horrible. I just held her little arms and cried along with her. After all that we got going again and she feel asleep for a bit. But throughout the transfusion they have to check her blood preassure often and when they did she woke up and started screaming like she was being tortured. It was so sad. We finally got out of there and got home around 4:45. I had a good long cry on the way home (thanks for listening Rach...love you).

Now for the good ending. We got home and Erin had just gotten home also and she had been to Target to get presents for the treasure box and shortly after Dan and Julie Garner stopped by with bag after bag of toys that their friends had donated. So I've decided that I won't wait till November to take them in but instead take a few bags each time I go. Believe me it is much needed. There still isn't anything but pink plastic horses in there. For the second time in a row Livi didn't even want a toy. I can't wait to see the kids faces when the open the chest and its filled with all the toys people are donating. AMAZING. Here's a shot of the toys I will be taking with my this Thursday. Can you believe how many there are already?



Thanks for today....
Dan and Julie Garner for getting the word out to more people about the toys.
Toys for the kids from....Erin Wallwork, Neysa and Nathan Thomas, Deb Gilmore, Tania Flaiz, Brenda Spackman, and Faye Holbein, her son and Mother-in-law

Cards from Mary Ann Kisic (and stickers), Beth Altrogge and Marmie

And a great dinner from the Minichs and from the Olivers.

Thanks

I am going to post a picture each week from now until the end of October to show the progress of the gifts for kids. I know that a lot of people are starting to think about it or have already given something to my parents...but I am considering the gifts I recieved today the first ones. So a huge thanks to Lisa Evans not only for being on the ball but for going way above and beyond and getting such cool toys. I am so thankful for them. So here is the first picture...all the gifts are from Lisa! She had some great ideas (like baseball cards and journals for older kids)


Please say a prayer for us tomorrow. We are heading to Hershey in the AM for a blood count. The biggest concern is that the reds and plateletes will be too low and she'll need another transfusion. Then they would have to take her off the meds and try something new. Also pray for her because her lymph nodes on her neck and jaw line are really swollen. I just noticed it and am glad we are going so I can show one of the docs. And she has a rash on her arm. Quite a bit to pray about. I'll update on our weekend and the results of tomorrows visit when we get back tomorrow.

from Indiana

We are in Indiana! The visit to Hershey Medical went fine. Alivia's counts were all down. The WBC's were down to 84.5 (good but remember high for a normal person is 19) and both her RBC's and plateletes were down. So the hydroxyurea (remembered how to spell it) is working...but hopefully not working too well on the RBC's and plateletes. Our next visit is Monday to check counts again. Hopefully that will be a quick trip too. They got blood on the first try and all the nurses think it was just a positional thing. Thank God...all the other options would have required surgery to fix. The bone marrow came back and suprise, suprise it was almost identical to the last one. They have all 5 been identical. Maybe we can not have one for a while now. So the next step is to keep bugging Johns Hopkins till they give us an appointment.

I only had one small bit of crying today. I was outside a patient room waiting for the doc to get down with something and I could hear the little boy inside crying over and over "I don't like it"!! Couldn't have said it better myself.

Andrew got on the road around 3 so he'll be in Indiana around 11. Can't wait to see him. At one time in our lives we fought about just about everything but over the last few years we have both grown up a lot and now are friends. I miss him when he's away (which is a lot since he doesn't live close) and get so excited to see him. He loves Alivia so much...in the beginning I don't think he knew what to do with this little baby but now he just can't get enough. Thanks Andrew it means the world to me. Can't wait to see you.

I mentioned yesterday that I am going to start collecting a new item to take to the Hershey Medicical Clinic with me. Well here are the details. After a child gets blood drawn, gets a bone marrow biopsy or spinal tap (older kids get these done in the office under local anesthesia) or just sees the doc they get to pick a toy out of this big treasure box. Often parents bring in donations for the box cause the pickens can get pretty slim. Right now there are about 50 of the same pink horse and not much else. So I want to start collecting things for the box. In the past there have been activity books, small games, or toys from fast food resteraunts. The toys need to be brand new and preferable in the wrapper. Most of the toys are little and under $5. Another really cool thing that people do is knit hats for the kids who have lost their hair. Over the next month and a half I will be collecting these things. So if you go out for a fast food meal and can afford it buy a toy or if you are in the dollar store and there are activity books buy one. Then you can send them to me, hand them to me in church or give them to my parents or James' parents. I won't take them to Hershey Med. till the first week of November. So if you can it would be another great way to bless someone going through cancer treatment. Thanks ahead of time.

Hilarious

For some unknown but wonderful reason Alivia was in the greatest mood of all time today. This morning my parents babysat for me so I could spend time with my sweet friend (by the way it was lovely and I enjoyed every moment).Livi (and my parents) did a great job taking her hydroxeuria (look I've forgotten how to spell it and will be spelling it wrong till I take the time to look it up again) Even though the time was great and conversation much needed I was so excited to see my girls smiling face when I walked in the door. And I got the smile I was hoping for. Darn she's cute.

She took an okay nap and woke up pretty happy. Then this evening while James was at men's bible study (better knows as care group) Alivia, Grandpa (my dad) and I headed out to Costco. Have I mentioned I love Costco. Not sure why but there is something so thrilling about all that bulk that makes me so happy. You never know what great deal you might stumble across...like a million rolls of TP for 2 dollars (okay not really but thats how it feels). We went with the goal of buying a train table for Livi for Christmas but found something even better. I'm going to wait to reveal what it is. But I'm excited. We got some gas for the ride home and while I was pumping it Alivia was laughing so hard at me. Obviously my dad and I were loving that. We got home and Alivia played for a while and practiced standing on her own.

So tomorrow we head for the docs again. Hopefully just for a blood draw. Poor girl..her port is all black and blue from the other day. It doesnt' seem to bother her but I'm not sure how getting it accessed is going to feel. We'll have to numb it up really good and pray for the best. If the numbers look good we'll be heading to Indiana. Pray hard to good numbers. I just want to see my brothers.

Please pray for the doc visit tomorrow....actually pray we dont' have to see the doc. if we have to see him that means something is wrong. and as always pray for complete healing. Thanks

Thanks to...Diana Bennett for the card to the nurses and to Vivian H. for the great dinner. It had something for everyone. Thanks for the card from Rose Tripode, Jill Piper and Rachel K (I laughed out loud...Love you so much)

Also a big huge thanks to my parents for watching Livi (which they will way was their pleasure...but I'm still thankful.

For any and everyone who missed the chance to write notes I am soon going to start collecting a new thing. So start looking for details...sometime this weekend.

Biopsy

Alivia did amazing today. She is such a trooper. The whole visit went as good as can be expected. It started out a little rocky. For some reason they had a really hard time getting any blood out of her port. It took over 20 mins of poking and proding before they finally got some. All the while James and my dad were putting on a comedy routine trying to keep Livi happy. It worked for the most part...until they had me lay down with Livi on top of me and that was how they finally got the blood. She didnt like that at all. Then we had an hour to waste so we painted some crafts, looked at the fish and did backflips (pretty much) to keep Alivia happy and unaware of how hungry she was. She couldn't eat anything after 5 am. This from the girl who usually eats about every 3 hours.

The counts came back and weren't good. Well no thats not all true the plateletes went up and the reds stayed the same. Unfortunetly the WBC's more than double since last week. We are now at 145. Darn it! Then we went up to the south OR. Livi tried her best not to freak out but was pretty scared. Poor girl. Then they had me sit on the bed and hold her while they gave her meds to put her under. She was completely freaked and screamed while looking longingly into my eyes like "mom take me out of here". I just wanted to push everyone aside and run for the hills. The procedure went fine and she woke up happy. What a trooper. She was eating cornflakes (her new favorite snack) within 20 min and ready to get out of there in abou 35. Unfortunelty she is now going back on Hydroxeuria. SO we had to hang out at the hospital and wait for the prescription to be made up. We had some lunch and got the meds and now we're home. I was hoping we wouldn't have to go back for a week but we have to go for counts on Thursday. But only counts. As long as all looks well we'll be heading to my parents for the weekend.

Over and over today the nurses mentioned how touched they were by the gift bags. Again my deep, heartfelt thanks to those of you who participated. Some notes are still trickling in and I am going to take them with me soon....in other words if you didnt get yours in the mail and still want to go for it. Here is another thank you note from one of the nurses
To the entire Haughery/Allen family and circle of friends, and especially Alivia.........
"I finally got a chance last evening to sit down and go through the mountain of thank you cards in the gift bag you gave me last Thursday. I was truly overwhelmed by the cards and had tears in my eyes before I was halfway through.
In my 25+ years as a pediatric oncology nurse, I have never experienced such an outpouring of gratitude and I am humbled and awed by all of it.
I just want to thank ALL of you for your gift[s].I am the one who has been truly blessed and privileged to have met all of you and Alivia, and all the children and families over the years. My life is richer for all of these experiences and I have a much deeper appreciation for the "little things" as a result.
We are all in this together, and we will get Alivia through this together. It warms my heart to see how loved she is by her parents,grandparents,uncles,cousins, extended family, and SO many friends.
Again, thank you does not seem adequate for what you all did. I am very, very grateful!
Sincerely,
Denise Gibson
[one of Alivia's nurses]"


Thanks for praying. Please continue to pray and ask for a miracle. Ask that these marrow samples are more clear and point the docs to an answer and that that answer is an easy one (not something really hard)

I am starting to collect the info on bone marrow donation and will post it soon so that those of you who want to donote (and most of you should want to) find out how too. Even if you couldn't donate to Alivia (if she doesn't need it...which is what we are praying for) there still might be a child out there who's life you could save. Can you imagine how great it would be to be able to do something small that might end up saving someone's life? I will get all the info and try to write a more indepth description of what it entails.

Big Day

Well tomorrow is another big day for us. We are scheduled for an 11:15 bone marrow biopsy. I must say I hate these biopsys. Livi is doing so well and has been so happy and these times under anesthesia always seeem to set her back. I dread it. I know that it is being done to hopefully get some more answers and to be sent to Johns Hopkins in order to get the recommendation of the big wig but as a mom I hate it. I used to cry over vaccination shots. Silly me. Little did I know the needles that woudl be in our future....big giant needles that go into my babies hip bone and leave holes on her back. If all goes well (and I am truly trusting that it will) we will be home tomorrow afternoon. My parents arrived tonight (Alivia couldn't have been more excited), James is taking off the day and Bill and Cynthia are meeting us up there. So the support for James, Alivia and I will be great. Just wish we didn't need it. Please pray for my baby tomorrow...that all goes quickly and smoothly, that she comes out of anesthesia easily and that the results are great and there is no need for intense chemo or a bone marrow transplant.

Over the last week I have made the mistake of going on line and looking up the side affects of bone marrow transplant. I am more convinced than ever that I don't want to do it. The possible negatives are overwhelming and either life threatening or life altering (ie. one consequence could be permenant skin disfiguring!) I definetly do not need to look up those things again. At least not until we have a decision as to what to do.

The next step in this process is to try Glevace. This is supposed to be a wonder drug but has never been used on someone as young as Alivia and has never been made in liquid form. So they have no idea what possible side affects could be. Also our doc is pretty sure that it won't be a cure but instead will just hold things at bay for a bit. We would still be looking for a cure. But at least that way it would be in check and less threatening day to day. After that or in conjuction with that we are getting all the info together to see the Big Wig at Hopkins. There is a whole lot of info he needs before he will even consider seeing her. So we are working with our doc/nurses to get it all sent out. As soon as they get the info they will process it and schedule an appointment for us. The hope is that somewhere along the line our doc missed something and will test for it, and find an easy solution. A very very long shot. But that is what our doc is hoping for. Then I guess we will have to make the decision on either intense chemo or transplant. YUCK. I am constantly praying that we won't be faced with either.

Enough for tonight. Tomorrow is a huge day. If all goes really really well we (Alivia and I) will be heading to Indiana on Thursday so see my brother Andrew. I am so excited. We haven't seen him since Easter. What a good way to celebrate the great results of tomorrow.

I wanted to post a comment that one of the nurses left for those of you who wrote thank you cards. Thanks for the comment Holly...

"I am one of the nurses fortunate enough to have the opportunity to care for Alivia and her family. I would like to thank Emily and all the family and friends that contributed to the tremendous and personalized bag of cards and gifts that was presented to me (I love the clips for my Emily:)! ). Such an outpouring of appreciation from people that do not know me and I will likely never meet truly touched my heart. Not to mention in the midst of caring for and worrying about her sweet little Livi, that Emily would have the time and thought to put something like this together. We were truly amazed and felt so touched and appreciated that she would think of us this way. People often say they do not know how I do my job everyday. It is families like this one that makes my job so completely worth doing each and every day. I feel truly blessed and honored to be able to touch and care for this family and do what I can for sweet Livi - even if the best part of the day is the sticker I always try and remember to give her and try to get one of those sweet little smiles in return.

My deepest thanks to all of you. Blessings to Alivia, Emily, James and all those that love and are praying for them.

Holly"

Thanks to Diana Bennett for the thank you notes and Colly Landis for the great meal (you found a meal we hadn't had yet...Good job!)

The Lord heard Him

I was sitting praying and thinking about Livi last night and picked up my copy of Beside still waters and this is the page I opened to.

The Lord heard Him...ps. 34.6
The poor man cried out, and the Lord heard him. The man was alone, and the only one who heard him was the Lord. Yes, the Lord, Jehovah of Hosts, the All-glorious, heard his prayer. God stooped from His eternal glory and gave attention to this cry.
Never think that a praying heart pleads to a deaf God. Never imagine that God is so far removed that He fails to notice our needs. God hears prayer and grants His children's desires and requests.
We can never pray earnestly until we believe that God hears prayer. I have been told, "prayer is an excellent exercise, highly satisfying and useful, but nothing more. Prayer cannot move the Infinete Mind." Do not believe so gross a lie or you will soon stop praying. No one prays for the mere love of the act. Amid the innumerable actions of divine power, the Lord never ceases to listen to the cries of those who seek His face. This verse is always true, "the righteous cry out, and the Lord hears, and delievers them out of all their troubles." (ps. 34:17). What a glorious fact! Truly marvelous!
This is still Jehovahs's special title: the God who hears prayer. We often come from the throne of grace as certian that God heard us as we are sure that we had prayed. The abounding answers to our supplications are proof postive that prayer climbs above the regeins of earth and time and touches God and His infinety. Yes, it is still true, the Lod will hear your prayer.

Appointment

Today's doc visit was neither good or bad. I didn't cry at all so I guess that is a good sign. Here is the bad news...her WBC's went up to 65.9. Here is the good news...her RBC and Plateletes also went up. So no need for a transfusion. Oh and she gained over a pound since last week. Crazy. Some of that is probably from her stomach getting bigger again but also it is good that she is growing. We ended up seeing the doc even though we were only supposed to get counts done but I think that was more because she has a cold or maybe a sinus infection. He gave us a prescription and we were out of there by 1:30. Never got out that early before. It was nice to head home. I didn't really talk to our doc about transplant but was able to ask some of the nurses about what to expect (if we do it). It will mean at least4-5 weeks in the hospital and that is without complications. The main dangers are infection, graft vs. donor rejection and donor vs. graft. All are really serious and scary. But at the same time it could mean she would get completely better. We are still praying for a big huge miracle.

The highlight of today was giving out the gift bags and thank you notes to the nurses. It was so much fun. They were all deeply touched and thanked us over and over. I am so glad we got to do that. Thanks so much for participating (those of you who did) it ment so much and brought tears to everyone's eyes. It pales in comparision to the work they do on Alivia's behalf. One nurse said she was going to read one at breakfast each morning to get herself started for the day. Isn't that great...for the next 50 days she will get to start each day with a thank you from someone. I love it.

I want to say a special thanks to Karen Linn for writing thank you notes. Karen and I went to high school together and never really knew each other but my mom has worked for her dad for years and years. Well earlier this summer Karen's husband Joe was diagnosed with high-grade/high-risk AML. He is undergoing chemo and they are looking for someone who matches for a bone marrow transplant. Thanks Karen for taking the time to write when you are dealing with your own medical issues.

Thanks to Marmie for the sweet card. Love you tons.

Please pray for complete healing (as always), good results from the bone marrow, wisdom for our doc and the specialist from Hopkins who will be reviewing her marrow, for me to be able to get all the info I need together so we can go see the specialist at Hopkins and for some sleep. Alivia's belly is really big again and it is making sleep hard for her...and thus hard for me.

from James

The following entry was writen by the best husband a girl could ask for. Thanks for writing it James and for being so honest and open. There is no one else I want by my side through good and bad. I love you tons babe.




I couple of months ago Emily asked me if I would like
to write on her blog. I thought "sure, that would be
easy". But, then I tried to write something and I
realized that it was going to be harder than I
thought. I have tried to write something a couple of
times and haven't gotten very far. Everytime I try to
put into words what I am feeling I get overhelmed. It
is hard to describe the feelings and emotions that
come from this experiance. So I decided that I would
just start slow.

I want to first say how much I love emily an alivia.
They are my life. Emily has been so strong. I am
amazed every day how she is responding to this
incredibly bad situation. And Alivia is so resiliant.
She lights up our lives. That is why this is so hard.

Our daughter is sick. But its more than just sick, she
is really sick. There is a good chance that she will
die. This sucks. This really, really, sucks. It is so
hard even to write this. It almost feels like if we
don't acknolwdge it, it isn't real. But this is a very
real possiblility. This thought is completley
paralizing. It makes me want to shut down. It makes me
not want to get up in the moring. It stops me in the
middle of my day. Its as if my life was over on April
8th. And now we are living in a weird parallel
univere were everything is off.

This is not somthing that gets easier as time goes on.
You don't get used to it. It doesn't go away. It is
just as hard, or more, than is was 5 month ago. It
just gets more and more draining. There is nothing fun
about what we are going through. There doesn't seem to
be anything good about it either. I still believe that
God exist. And I believe that He is in control. But I
don't see anything good about this situation. I don't
see God in it. But in my head I know that He is here.
I just don't feel it or see it or experience it. All
we have is trust. I guess that this is what faith is.
Believing in something that we can't see. We have
nothing concrete to hold on to. All we have is blind
trust. This is a very scary place to be. But somehow
we make it through. We move along. Each day we take
another step forward.

Thats all for now. Its late. I hope to write more in
the future. I want to end by saying thanks to my
friends. You know who you are and you have been there
for me in this time. You let me be myself and you hold
me up through all this.

*James*

Labor Day

This weekend was busy, busy, busy. We planned on going to First Friday (art gallery's in lancaster all open up and have wine and cheese on the first friday of each month) but Ernesto rained us out so instead John, Chris and Will came to our house. Saturday we had a much needed family day. Sunday my parents came so James and I could go to a wedding in Maryland. But Saturday night was really hard with Alivia and both James and I couldn't imagine spending 4 hours (total) in the car. We hated to miss the wedding but the stress is really starting to get to us and driving a long distance seemed like a really bad idea. Instead my parents watched Alivia and we went to some local cook-outs that friends were having. It was so relaxing and a nice time for James and I to be together. Since Alivia has been sick we have only ever gone out alone one other time. Getting a babysitter just isn't possible. The list of medical things that someone would have to be aware of is so huge and we would be a nervous wreck the whole time we were out. So unless my parents (who have been around for most of the doc visits and know what to look for) are here we aren't at all comfortable leaving her at home. Thus we never go anywhere without her. It actually is nice to have her along and we miss her so much when she isn't with us. That and she's so well behaved when we are out and about it makes it a joy to take her with us. Anyway...than Monday we had a picnic at our house. About 25 people showed up and it was a really nice time. Thanks to Neil and Jess for driving so far to come visit. We miss you guys when we dont' see you.

It is getting harder and harder for me. I am drained and tired. It is painfully obvious that Alivia is not developing normally. Yesterday there were 4 kids all younger than Livi at the picnic. All four of them are walking or close to it and next to them it is obvious how huge Alivia's stomach is. I guess I'm so used to seeing it that I don't realize how big it is. I find myself crying much more than I used to. I can't believe this has been going on for almost 5 months. Its the longest, hardest 5 months I have lived through. Right when I was starting to get all down and sad yesterday the coolest thing happened. Alivia stood all by herself. Not by accident or without realizing it but on purpose and repeatedly. It was so cute how proud she was of herself. And she did it again today. I love her so much.

Here is a cute pic from today. I put her in her crib and put all the stuffed animals she owns in with her. She had a blast throwing them around, hugging them, kissing them and doing her little wiggly dance. What a sweet time.




Thanks for all the thank you cards. I think a few more might trickle in tomorrow. I am so excited to give them to the nurses Thursday.
Thanks to Erin Wallwork, Beth Mellinger, Anya Stolzfus, Tina Lapp, Lori Kohl, Denise Teaman, Jamie Sentz, The Bumbarger Family, Rochelle and Brielle King, Julie Duffee and her Horace Mann 4th Graders...Amazing.

Here is the tally-
Janiece- 52
Holly- 52
Lois- 56
Chris- 57
Cindy- 54
Carol- 55
Joanne- 52
Maritza- 54
Denise- 51

I can honestly say I never expected to collect this many notes. I thought that each person would write one and so I would get a hundred or so. But I am overwhelmed with how many people wrote 1, 3 or 9. It is so great and means more to me than you can imagine.

Mornings and Evenings

By Charles Spurgeon

I often read this devotional and for those not familiar with it there is an entry for each morning and evening. But I have been stuck on August 31 morning. I have been reading it over and over. I thought I would share it.

"On mine arm shall they trust" Isaiah 51:5
In seasons of severe trial, the Christian has nothing on earth that he can trust to, and is therefore compelled to cast himself on his God alone. When his vessel is on its beam-ends, and no human deliverance can avial, he must simply and enteriely entrust himself to the providence and care of God. Happy storm that wreacks a man on such a rock as this! O blessed hurricane that drives the soul to God and God alone! There is no getting at our God sometimes because of the multitude of our friends, but when a man is so porr, so friendless, so helpless that he has nowhere else to turn, he flies onto hi Father's arms, and is blessedly clasped therein! When he is burdened with troubles so pressing and so peculiur, that he cannot tell them to any obut his God, he may be thankful for them: for he will leanr more of his Lord then than at any time. Oh, tempest-tossed believe, it is a happy troubble that drives thee to thy Father! Now that thou hast only thy God to trust to , see that thou puttest thy full confinced in HIm. Dishonour not thy Lord and Master by unworthy doubts and fears; but be strong in faith, giving glory to God. Show the world that they God is worthten thousand worlds to thee. Show rich men how rich thou art in they poverty when they Lord God is thy helper. Show the strong man how strong thou art in they weakness when uderneath thee are the everlasting arms. Now is the time for feats of faith and valiant exploits. Be strong and very courageous, and the Lord they God shall certianly, as surely as He built the heavens and the earth, glroify Himself in they weakness, and magnify his might in the midst of they distress. The grandeur of the arch of heaven would be spoiled if they sky were supported by a singly visible column, and your faith would lose its glry if it rested on anything discernible by the carnal eye."


Thanks to Sue Kirkbride, Kathie Kearney, Sara Brode, Breanna, Isaiah, and Elijah Thompson, Luke and Christina Smart and Laura Mohney for the thank you cards for the nurses.
Thanks to Sarah Sams (my cousin) for the lotions for the nurses
Marmie for the sweet card
Joan Burke (Maureen's mom) for the quilt.