fireworks

Is it strange that I felt like the fireworks tonight were for us? I sort of felt like we're celebrating yesterdays news all day. Last night we actually got sleep. Alivia was so relieved to be able to sleep on her tummy that she feel into a deep sleep and only got up at 12 and then at 6 and went back to sleep till 8:30. She woke up with a smile. We got to go to Old Navy, Barnes & Noble and lunch with April and the twins (oh does Alivia love those kids!). And then Beth Altrogge and Maureen Bourke came to visit..such fun. And we did some grocery shopping for our picnic and then tonight we walked to the park and then went to fireworks in the city with the Spinetti's, Yoder's, Maureen, Beth and Livi's Uncle Will. Just normal things that are way to much fun when you have good news and sleep.

We had a great day and this weekend should be fun. My parents arrive tomorrow and that will be fun too. I'll try to write this weekend but may be really busy. happy 4th of July. I'll try to get a good picture of Alivia with her 4th of July outfit on to share.

pray for...
...continued return of appetite
...bathroom issues...she is going too much and it is not the right consistency... probably enough said about that. If it doens't get better we may get to go back to the hospital before next Thursday

wonderful

this is going to short and sweet since Livi is asleep and we all know that sleep is like gold in this house..rare and precious.

our doctors visit was short and sweet also. Alivia's WBC count went down to 37.5 and her platelettes came up to 113 (that means her marrow can finally produce some of the cells it hasn't been able to). Her pulse oxygen level was 97% which is an A+. And the greatest treat...we don't have to go back till NEXT Thursday. Thats a whole week. OH JOY JOY JOY!!! Thank you Jesus! All in all a wonderful visit. I almost forgot how tired I am (only got 3 hours last night). They took out the access to the port so there isn't anything outside of her skin. She was so relieved. She usually sleeps on her belly and couldn't because of the access. I went to lay her down for her nap and she hesitated (like it might hurt), realized there wasn't anything on her chest and flopped down with a smile. She fell right to sleep. So good. Of to a nap for me.

Thanks to..
...Cynthia for coming with us and for doing my dishes when we got back! One less thing to think about for me...thanks!
...Geena from my dad's office for the Nemo magnets. They helped distract on Monday when Alivia was hungry and wasn't allowed to eat. She loved them.
...Everyone for praying. It's working. I said "oh the medicine is finally working... then stopped myself and realized..its not the meds its God allowing the meds to work. He is not suprised by them working or was he suprised when they didn't work. He has this whole thing planned down to the last second. Thank you Lord. (even when I'm complaining!)

At home

Obviously I am a very slow learner. Again with the expectations. I though...it will be a little rough being home but she'll be so glad to be out of the hospital that she will just fall asleep peacefully...maybe be up a few extra times but in general finally get some sleep. Silly me.

James is currently walking her around the first floor of our house. Looks like she and I will be sleeping down here tonight. She definetly doesn't want to be in her bed, especailly since her port is still accessed and she can't lay on her chest (how she usually sleeps) they actually told me that she could lay on it but there is no way Alivia would even think of doing that. I think it must be pretty sore since we won't even lay down with her head on my shoulder..which is the way she usually falls asleep. It will be so nice to have to access out tomorrow.

Funny how domestic things continue even though I felt like life had stopped. I came home and did the laundry from our hospital stay, there were a few loads of laundry to put away, Livi had a poop blow out on the living room carpet that had to be cleaned, the dishes are piled up in the sink...time for a dishwasher I think. James blessed me by taking her for a walk and letting me sleep for about an hour and a half. Hopefully I'll have enough strength to get through tonight. Never thought I'd miss anything from the hospital...but the one chair in our room would be really helpful to have at home. Next time we'll have to see if we can fit it in our suitcase when we leave...just kidding.

Thanks to...
...Kathy Booker for being my domestic goddess and making us an amazing dinner that we just had to warm up. I might have had a nervous breakdown if I had to cook dinner. Or we would have been eating something that didn't make any sense like eggs and carrots. Regardless you saved me from some more stress. Love you.
...My James for being the best dad and husband I could dream of. You take care of Alivia and I so well and put aside your own desires and comfort to make my life a little easier. I love you love you love you.
...to the nurses for doing such a great job (again!!) every single time they are the bright spot in our hospital stay. they make the whole experience almost bearable (nothing will ever make it completely bearable).


Sometime soon I'll write the top 10 ridiculous (things that make you say...WHAT?) things said by hospital staff to us. Some of them just make me laugh so hard.

Pray for...
...some sleep. We sure could use more than a little but will settle for anything at this point.
...a super quick visit tomorrow
...that Alivia's chest won't be sore after the access is removed.
...lower WBC count.

Gotta go...Alivia is really fussy and we have to figure out how to get her to sleep!

In the hospital

Update

The Echo went well. they had a hard time getting the picture because of all the gauze from the operation but they got a good shot and said function is normal. Thank you GOD!!!

She has been on room air for about 2 hours and is sitting pretty at 97% (before all of this she was at 98-100 so thats almost normal.) That is well within the range that we could go home. just a few more docs talking to docs and residents checking this and that and we will be heading home. They will check pulse oxygen another time or two over the next hour or so and if it remains this good we are going to make like a tree and leave. I am cautiously optimistic.

currently my dad is pushing Livi in her stroller and every once in a while coming over and running into my chair...which is making her laugh out loud. So good to hear that sound! I will update later...hopefully from home...after a nap in MY OWN BED!!!

Thanks to everyone for praying. We could feel how the love and support of all of you and it helped so much over these last few rough days.
Thanks to Kirk, Holly and Ryan for the bag-o-fun. I swear one of these days we will actually have lunch outside of the hospital and it will be so nice...or better yet.. go to a park.

short and quick

not much time to write.
waiting for the echo...they do it in our room. just have to bring the machine and tech
got the x-ray done. no results yet. have to compair yesterdays and todays
they are going to start weening her off the oxygen to see how it goes

we got some more sleep last night. there was some stretchs that lasted almost 3 hours. still tired to the bone. keep fighting to stay awake. but since Alivia finally feel asleep i'm headed for a nap.

more news later. hopefully from home!

What time is it?

I have lost all concept of time. Maybe its because we are waiting around for a bunch of tests all day or because I slept less than 2 hours last night. Either way I am confused. I thought it was midnight and it was only 9:20. Didn't help that I feel asleep for a while right around 8: something.

We got some good news and some mixed news and some possibly scary, bad. After all the stress and trauma of the last few days her white cells dropped to 43. That is so great. All the doctors we expecting a spike from the stress. Seems like the medicine is working. The meds that were to clear up the fluid in her lungs don't seem to have worked. She is still breathing rather quickly, although her oxygen saturation is a little better. We had an EKG and it looked fine but we have an Echo schedules for "first thing" tomorrow morning and another chest x-ray. We have been handed a bunch of different scenarios and no real answers as to why this is happening. First is fluid overload from the surgery, Second, allergic reaction to one of the medicines used for intubation, Third, the beginnings of cardiac failure. Obviously the last is the scariest. The first should go away with the medication she took earlier, the second should go away with time as her body works out the reaction and the final one they haven't really told us what they would do to deal with it. I think because I'm so tired I'm sort of numb.

Thanks to...
...Ang for spending most of the afternoon with us
...Corey and Kathy for both stopping by (at different times) and bringing dessert
...Pete P., Doug P., Kurt W. and Lyndon and Jamie S. for driving up here to see us and pray for us.
...James' family (Bill, Cynthia, Uncle John, Uncle Chris, Uncle Matt and Aunt Vivian) for spending the evening with us
...my dad for sacrificing and only sleeping about an hour all day so he could help out. I couldn't have made it through last night without you Daddy. I love you tons.
Livi is so lucky to have you for her grandpa

Pray for...
...good Echo (sonogram of the heart)
...clear lungs
...slower heart beat and breaths
...good oxygen saturation in room air (She's still on oxygen and hasn't been without it since the surgery)
...sleep

Bad X-ray

we went for another x-ray (had one in the recovery room yesterday) and this one showed "a lot more fluid". They don't know why. So they gave her some medicine that might clear it all up. But the other possiblity is that for some reason she reacted to the surgery and started to produce a ton of white cells and they are now crowding her lungs. We are waiting to see if the medicine works and if not then we will go to the clinic and get her port accessed and get a CBC to see if it is the white cells. I don't know what will mean. I'll write when I have an update

Delirious

Both Dad and I are a bit delirious from lack of sleep. I may have gotten 2 hours but it was so spread out and not comfortable. I think my dad got less. Livi only got about 4 or 5 hours and is now incredibly miserable. I had to sneak to get out of the room. We haven't seen the doctor yet today and I have no idea what they are going to do since the breathing didn't get any better overnight. Its even more scary and intense when you haven't slept. Her oxygen levels are good as long as she in on the nose cannons (think thats what its called) and her heart rate is good then also. But she is breathing almost 20 breaths more a minute than normal. I guess they will probably do another chest x-ray and give a diaretic. Hopefully that will work.

Pray for us.

Crazy day

I am currently sitting in front of the computer in the lounge of the hospital eating a cold hamburger. Not what I planned to be doing at 11:30! Today started out wonderfully. We got to the hospital around 9:30 and got the IV started and blood drawn. Then we waited for her counts to see if she needed platelettes...which she did. But the good news was that her WBC's came down to 50! So good. So thankful. No vincristine...again! The doctor is hopeful that the meds are really working and she will just keep taking them. We also signed for permission to do another bone marrow biopsy since she would already be sedated.

We sat through the platelettes (1 hour) and by the end she was getting pretty crabby since she hadn't eaten since 8am. Finally we took her over to the same day unit (surgery and going home on the same day unit). By this time she was pretty upset and hungry and tired. We did everything we could think of to keep her happy. Then they came in with the happy medicine that is supposed to calm her and make it easier to hand her off to go to the OR. Well she was calm and sedate and silly for about 20 min at the most. And it took way longer than that to get everything ready for the OR. So she was pretty upset when we handed her off. I could hear her crying as we walked away. We went and had lunch (worst lunch ever...all I could think of was her and how she wasn't getting to eat). Then James and Dad went to pick up her perscription and I went to wait in the waiting area. They got back and we all sat around and talked till the call came that she was out of surgery (thanks for visiting with us Dr. Booker...always nice to see a friendly face...makes me laugh to call you Dr. Booker).

I got a bottle and went right down to see her. She was really upset and just wanted me to hold her. She was really flushed (almost bright red) and hot to the touch. But when they took her temp it was only slightly elevated and went down to normal pretty quickly. Her pulse oxygen level wasn't good, she was breathing quickly and her heart rate was really high. So they watched her for a while in recovery and then decided to take her down to the same day recovery area. That way we had our own nurse and constant care. We got there around 4:30 and by 7:00 her stats hadn't gotten much better unless she was on oxygen so they decided to admit us to watch her over night. They think that she didn't react well to the kind of anesthesia that they gave and that some of her smaller airways (bronchials) might have collapsed. The doctor (not our regular oncologist) said that she thought that it would clear up overnight with continued oxygen and if not they will give her a diaretic tomorrow to clear out any fluid. (I just stopped typing for a moment and realized how crazy it is that I'm even saying these things about my little girl...what happened to our lives?)

She has the oxygen tubes in her nose...which she hates and keeps trying to take out, so they taped it to her face. Right now James is holding her and she is sleeping. Its going to be a long long night. Thankfully its already part way over. Don't think I'll get much sleep.

The port looks...fine, I guess. It is a large bump in the middle of her chest. One of the residents asked me what that bump was....okay seriously did you read the chart before you came into our room? But it will make it much easier on her little veins and so that will be good...once we get her back to breathing right. Definetly not what I expected from today...but then its not what I expected from my life either. Guess that's why we shouldn't have expectations.

Thanks to...
...Angie for the meal. The boys (James and Dad) loved the sausages. Might need you tomorrow after all...in a different capacity. I'll call.
...my Dad for being with Alivia and I every step of the way today.
...James for driving back and forth twice and working when he would much rather have been with us.


Better get back to my girl and my husband.

Sleep

We are soon going off to the hospital. Just wanted to let everyone know that we got a really good night sleep last night!!!! It was the best she has done in a long time. What an answer to prayer. Thanks for praying today.

T-Minus

In just 13 hours we will start the admission and pre-surgery routine. Can't believe this is our lives. The first time Alivia was in the hospital my mom and I can up with a code for when we needed to have a really good cry. Then we wouldn't be worried when that person went off for a while because we knew they were having a cry and would feel so much better after. Its funny cause if anyone utters that phrase I think "wonder what they are sad about". Its a very normal statement and doesn't have a thing to do with crying...thats why its such a good code.

I am going to have the nurses look at Alivia's ears before the surgery cause she has been pulling at them. I think its teeth but just want to be sure. She had an okay day today. Yesterday she stumbled (on 2 seperate occasions) when trying to walk and hurt her foot again. So she couldn't really cruise around today and that was pretty frustrating for her. Maybe a full day off her leg will help and hey we just happen to have one of those scheduled tomorrow.

Well I need to take a shower before I go to bed so we can just get up and go tomorrow. Just one less thing to try and do. Maybe we'll get to sleep a little extra...or maybe not.

Pray..
...Alivia sleeps well
...she goes in and out of sedation easily
...the port is placed well and doesn't bother her
...drop in WBC's so she doesn't need Vincristine
...that her leg heals completely and she isn't bothered by it anymore
...that there isn't an ear infection and that her teeth don't bother her much.
...peace for us. Mercy for Alivia. Healing. A miracle.

Thanks to...
...my dad for coming to be with us
...Leslie M. for the sweet phone call. It ment so much. I am not so good at conversation right now but it was just good to hear you voice. Good thing our parents became friends all those years ago or I would have missed out on you. Love you.
...James for working so hard. You take such good care of Alivia and I. Smooches.
...my mom. just cause.

Been a few days

Took a few days off from writing.

Tomorrow is Alivia's surgery to put in her port. I'm relieved that she won't have to get stuck anymore and that we got to pick the type of port. We picked the mediport which is under the skin. Each time we go to the doctor we will put a little numbing cream over it and she won't even feel the stick. The other kind (broviac) just seemed way to much. She wouldnt have been able to take bathes (only sponge bathes) or swim, we would have had to change the dressings all the time (especially cause she gets so sweaty) and how do you tell Alivia, let alone all the other kids, not to touch the tubes hanging out of her body. We truly feel that this is the best for Alivia. So tomorrow around 2 she will be in her surgery. It is supposed to take about an hour. We have to arrive at 9:30 so she can get platelettes. It will be a long day, made longer by the no food rule. Alivia can't eat food after midnight and no formula after 8am. Hopefully there will be enough going on that she won't realize how long its been since she's eaten. My dad will be with me all day and James will come to the hospital around noon. Pray for us and for my mom who has to work and can't be here. She has the hardest role tomorrow...that of waiting for news.


Thursday was a good day as we send...but I got a reality check. That was the hardest part of the day. We saw a family who was in the hospital with us when we started the chemo. Their little boy (who is 3) had just been diagnosed with ALL. They were definetly in shock. When you are diagnosed things happen so fast. Their little boy was an extremely active, talkative, happy 3 yr old. So we saw them on Thursday and I was shocked. I would never have recognized him. He lost all of his hair and has gained 8 pounds in 2 weeks from the steroids. He was crying the entire time they were there and just miserable. I got to see what I've been praying for. I often find myself asking that Alivia's leukemia would turn into ALL (one of the possibilities) because it was the "easy" kind. I had no idea how sick she would get if she had that kind or how fast it would happen. I guess I thought it would be, well, easy. Obviously not. Now I'm just praying for a miracle.

Thanks to the Hughes for their generous gift. We are so blessed.

Pray for...
...surgery (good results, easy recover..etc)
...her teeth (she's gotten 6 in 3 weeks and is probably working on at least 3 more)
...peace for all of us.
...some sleep tonight. On average she is getting up 4-8 times a night. It is so hard for me to keep it all going on that little sleep.

The Report

Here is our tale to tell today. The numbers came down. Not enough to rule out Vincristine forever but enough to rule it out for today. Her WBC are at 90.4. Since the numbers did come down the doc felt it would be okay to wait till she got the port before they gave it to her. The Vincristine is dangerous and must be put into a really good IV otherwise it will burn the skin. With a port there is no chance it will burn the skin. So Monday morning we will go into the office and get an IV put in and get her CBC done. Mainly to check her platelettes but also to check the WBC. If her platelettes are low (which they were today) then she will have a transfusion before surgery. And if here WBC have gone down more they won't give Vincristine. But it they aren't down enough then they will give the Vincristine once she is out of surgery and has her port in. It only takes 5 min to give the Vincristine.

Pray....
...her WBC come down even more and there is no need for Vincristine
...the surgery is scheduled late morning so she won't have to go too long without eating. (just another hard thing for her)
...the surgery goes really well
...that she is healed

Thanks to...
...my parents for going with me and putting up with me being snappy all day
...Cynthia for cleaning my house while we were gone...so nice to come home to a clean house
...The kids of Crossway for the super cute poster. I love it and Livi will too (when she wakes up from her nap)
...the nurses at HMC for being amazing. I am newly blessed by you each and every time I come for a visit. You go above and beyond to treat Livi like a princess and try to keep her happy even through all the hard things. This experience would be even worse if it weren't for you. Thanks so so so much.


by the way if you want to write a thank you note to a nurse that would be great. We mainly deal with Holly, Joann, Lois, Cindy, Denise and Pam. These ladies deal with really sick kids all day, everyday and they do it with huge smiles and sweet words. I dont' know if there is anyway to thank them for the work they do. But it you would like to write one or all of them a letter please send them to me and I will deliver them. Thanks. (our address is 2768 Lititz Pike, Lancaster, PA 17601)

By the way I dropped of the designated donor permission sheet today so go ahead and donate those of you who gave me your name and birthday. Know that in order for her to use it you have to donate 4 days before she needs it. Thanks so much for making this huge sacrifice.

Thank God

After a few stitches in her leg Marmie WALKED out of the hospital. Thank you, God. The Allen's have not had car accidents before this time. Maybe we are all a little preoccupied...although Marmie's accident wasn't her fault. Someone ran a red light.

Love you Marmie...so glad you are okay. Still wish we could be there.

What now?!?

I think, Okay what else can happen? and then something else does. My almost 81 yr old grandmother (the amazing wonderful Marmie) was in a car accident this morning. Details are still fuzzy but she will probably be alright. She has a cut on her leg and it may be broken. Probably one of the worst things she could have happen is something happen to her legs. She has always had problems with them (from childhood) and has pretty bad arthritis. She just got a new car a few weeks ago and it is all messed up now (the least of her worries but still hard to deal with). I'm sure she will hate that I even wrote this (won't want people to worry) but I love my Marmie and want everyone I can think of to pray for a quick recovery.

I love you Marmie. So glad you weren't hurt more and so sad that you were hurt at all. I wish we could be there to help you feel better. But know my heart is there. Hugs and Kisses.

Today's count

The blood draw went well. They got it on the first try and she was such a trouper. Stopped crying as soon as they were done.

Unfortunelty the numbers where not good. Her WBC's went back up to 124. So if they don't go down into the 70's by Thursday we will star the Vincristine.

Pray the numbers go down.

Can we handle more?

In case there wasn't enough going on my dad is having some skin cancer removed from his head today. This is the second time he has had this done and it is not much fun (obviously). People say that God wont' give you more than you can handle..but I don't think thats true (no need to set me straight on this one). Instead I think he gives you things you can't handle then gives you faith, strength, grace...whatever you need...way above and beyond what you could ever have. No way can we "handle" all of the things going on in our lives right now. But thankfully we have God to carry us through this. It is still ridiculously hard and I still have major moments of doubt, unbelief, mistrust and grumbling but its good to know I have a Savior I can fall back on.

Please pray for my dad today. I know this isn't an easy thing for him (or the rest of the family). Pray they get all the cancer cells out and that they dont' find any new spots. Thanks.

Thanks to Cheryl Angel and her K-5 Sunday school class for all the cute cards to Livi. (Parker Scherf, Abe Botsford, Dominick, Trevor Walls (Thanks for the advice but sugar tastes so good Trevor!), Eden McCracken, Brielle King, Myra Nicoll, Alayna Schoenfelt, and the rest of the class who's names weren't on their beautiful drawings)

Father's day

The last few days have been so so soooooooooo busy. Friday morning April and the twins came over to swim in our huge (4x4 round) baby pool. They all packed in...Livi spend most of the time crying cause she was hungry or tired or both. But the twins had fun. Then Friday evening my Uncle Pete and Aunt Maria stopped by on their way to NY...it was bout 4 hours out of the way but they did it anyway. We went to Macaroni Grille for dinner and spent some time catching up. Then once Livi was in bed I went out to sing Karaoke with some of my girl friends.

Then Saturday morning James, Livi and I went to market, took a nap and then went to a rugby party (its been so long and it was great to see everyone). The Saturday night my friend Rachel came for visit for a few hours. We took Livi to a park and had fun laughing about high school.

Then this morning we went to church...oh wait we started the day nice and early since Alivia got up at 5:45 and I couldn't get up one more time so I rolled over and said "James" in a whiny voice (sorry babe) and he got up with her. I was up with her about 4 or 5 times before that and James let me sleep till 8. So we each got some sleep. After Alivia wakes up from her nap we are going to James' parents for a visit and then to Jeremy L. graduation party.

Tomorrow James is taking the day off. We have a blood draw in the AM and then are heading to IKEA to look for a loveseat.

As you can see it has been one thing after another around here. Its good to keep busy..less time to think about Livi being sick.

Happy Father's Day James. You are a great dad. I love how Livi's eyes light up when you walk in a room. You have worked so hard to make our lives comfortable and even worked when you would rather be at the hospital with us. Thanks for making sacrifices so that we won't have to worry about bills when all this is over. You are amazing and I love you tons. Kisses.


Thanks to..
...Grace Privitera for the dinner and sticker book for Livi
...Pete and Maria for going way out of their way to take us to dinner and spend some time with us. We loved seeing you.
...Rach for driving the whole way here to spend 4 hours with me. I love our times and just like sitting laughing with you.
...Amy, Sonya, Hollis, Julie and Kate for making me laugh so hard I cried. That was one of the most fun nights I have had in a long, long time. I can't wait to do it again sometimes....as long as you girls are there.

LOOOOOOOOOOOOOOOOOng day

Today started at 6:30 (although I had planned to get up at 7:00... Alivia decided to get up earlier). We left our house around 7:30 and got to Hershey in time for our 8:15 appointment. The first thing that we did was put numbing cream on Alivia's hands. It takes a hour to work so we walked around. After about 45 min she had picked the corners of the bandages off and the cream was oozing everywhere so we decided to start the IV early. (they put in an IV so that if she had to get a transfusion or vincristine it would be all ready..only one stick). Let me just say that our experience today and our experience on Tuesday were like night and day. Alivia didn't even cry today when they put in the IV. The nurses in our office did such an amazing job. They also did a dance and sang a song for her while she was getting her blood pressure checks so that she wouldn't cry. They are amazing. I love our nurses. I gave her her chemo and then we went for ANOTHER walk to wait for the lab results. After an hour we came back and checked the WBC count was down to 101 (that's minus 16 thousand since Tuesday!!!) WOO HOO. Almost didn't matter to me that her Red's were down too and we had to do a blood transfusion. So we gave her tylenol (you can get a fever from blood transfusions) and went to lunch while the blood bank was getting her blood. Then we sat in the infusion room. Now I had no idea how long a tranfusion takes....but 3 hours is a long time for a 1 yr old to be in one place. Thankfully she fell asleep for the first 1 and 15 min. Then we watched movies, colored, played with stickers, played with toys...whatever we could think of to keep her occupied. She made it through and is a rosy cheeked little girl once more. (I didn't realize she was pale since i"m with her each day but it does make a difference). We didn't even have to see the doctor since everything looked good.

So we will continue on this path for a while as long as it is working and pray for a cure. On Monday the 26th she will have a port put in. We going to prayerfully consider which kind to do. There are two options...broviac and medaport. The one hangs out of the her chest and the other is under the skin. We are leaning one way but want to really think and talk and pray about it before we decide.

Pray for...
...continued lower WBC (next check will be Monday)
...wisdom about the port
...some time to relax and enjoy each other.

Thanks to...
...Cynthia for sitting through the whole day with us. She got mistaken for my friend or Alivia's aunt today. No one believed she was Alivia's grandma. Hope that happens to me when I'm a grandma.

Have to go cuddle my cute husband...and my cute little girl.

Don't really know what to expect for tomorrows doctor appointment. I would love for her numbers to be down again and just continue what we are doing now. But I want to be realistic and realize there are a lot of options. Her WBC might be down more (good) but her other counts could be down too in which case we will do a blood transfusion. Or her WBC count could be back up and we'll start the Vincristine. Hopefully not the second option. I am trying to trust God...its all just so intense and scary. I feel like I'm on the worlds worst roller coaster. I want to be thankful for each day and not think to far ahead but its hard not to.

Pray for...
...good numbers all around
...wisdom for our doctor
...rest (we have to be in Hershey by 8:15 which means we leave around 7:30 and I am going to have to wake Livi up to leave. Not sure how she'll deal with that)
...easy blood draw (hopefully it will be since the nurses in the office will be doing it)


Thanks to...
...the Williams kids for the Bible and stickers. So sweet.
...suprise dinner from the Felizzi's. I was upstairs in the shower and didn't realize they were even coming and came down and dinner was on the stove. What a great suprise. Thanks

This might be long

Here is the whole story from start to finish.

We had to be at the hospital at 9:15 so we left Lancaster at 8:30. First thing we went to the out patient heart & vascular department. Livi had her echocardiogram which she screamed through (doesn't even hurt but she doesn't like being touch by people she doesn't know). The results showed that her function is good and that is what they were checking. So that was good. Then we went over to the office we always go to and got out paperwork for the bloodwork. Suprise suprise this is where things started to go horrible. They were supposed to only have to do a finger prick cause it would be "easier". Not the case. The stuck her ring finger on her left hand but it "stuck wrong" and the blood ran back down her finger instead of forward. So it was mixing with sweat (cause she is a sweater and she was freaking out the whole time which makes her sweat more). So then the tech decided to stick another finger. She did the middle finger on the left hand. The blood was flowing out and we were close to done when the tech dropped the vial on the floor and it spilled everywhere. Keep in mind Alivia hates being restrained in anyway and with a finger stick you have to squeeze the finger constantly. So the the tech went and got another person to try for a vein. Well as they are trying (I'm crying and Livi's crying and Cynthia is crying) they ask how far away we live and if we could come back (the answer to that question is always going to be NO! We aren't doing this for fun we need to get this blood). We got Livi all bandaged up (she looked like she was in a baby fight with one finger with a bandaid, the other wrapped with gauze and a purple bandage and a purple bandage around her arm. She's crying, I'm crying, Cynthia is crying. We were a sight. So we went back to the office and the nurses took such amazing care of us. They put us in a room, got windup toys for Alivia, tea for Cynthia and chocolate for both of us. It was such a relief. And they said we never have to go to the lab again. That they will always do the blood draws in the office from now on! Both Cynthia and I burst into tears again from relief. Such a blessing. The nurses are amazing there (seems to be a running theme for the whole hospital) I am going to get all of their names and start collecting thank you notes for them. They take such good care of us. The put numbing cream on Alivia's hands so that she wouldn't feel the needle prick and they will do that each time from now on. It takes an hour to work so we gave her the chemo she has been taking at home and went for a walk. By this time we were all drained.

Let me give a little back story. I had a little breakdown last night at about 11:45 and called a dear friend who was kind enough to get out of bed and talk to me till almost one. It was so nice to talk and she listened to me cry and reminded me of truth and just was amazing. So thanks Ang, you'll never know how much that ment. If I can ever repay the favor just call as late as you want! So needless to say I was more tired today than usual.

Back to our story...We walked for about an hour...went to the gift shop, got Cynthia some Starbucks (she deserved it after the morning we had!!) and called James and my parents. We went back to the office and they put in an IV. That way they could draw the blood and if we did have to start vincristine then she wouldn't have to get stuck again. They did the blood, we went to lunch, we came back, results were good and we took out the IV and came home. Her red BC and platelettes are low so we might have to do a transfusion on Thursday. And if the WBC's go up at all we will start the Vincristine but we aren't thinking about that now. We are just being thankful for today.

Thanks for today...
..Cynthia for toughing it out with us. It was a rough day and so nice to have you with us. Thanks for supporting us. (and loving us)
...Kathy Booker for stopping by the hospital (in shorts and flipflops) to drop off treats for Livi and I. and for picking up the chemo. You're such a good friend
...Ang again for being Ang.
...Chris for driving to Hershey this evening to get the chemo from Kathy so we didn't have to drive tonight. Thats 10 points in the favorite uncle book.

Almost forgot to talk about blood donation. We talked to the nurse about people donating that aren't matches (o+) to Alivia. I didn't know this (thanks for pointing it out Lynn) but if someone donates in Alivia's name even if it is not a match she gets a credit towards her account. They need to have a pint for every one they use and so Alivia needs credits in her name. We also found out that if you are not a blood match but want to donate in her name you can donate at Lancaster General or your local hospital. I'm not sure if you can outside of PA. But if you do go in ask if they can credit the Central Penn Blood Bank for Alivia Haughery who is being treated at Hershey Medical Center. The number to call at Lanc. General is 544-4931. We can use as many credits as we can get. Just in case we need them down the road. So start donating. Thanks everyone.


Pray for...
...continued drops in the WBC
...a raise in the Red BC
...continued good health for Alivia (no outward signs)
...teeth to come through
...rest and peace for the Allen/Haughery familys

Details later

I will fill in all the details of another super tiring day at Hershey Medical Center. I just wanted to say that Alivia's WBC count came down to 117 from 200. That ment no new meds today!!! I am so excited (even though I can barely keep my eyes open) It was a draining day....one of the hardest for me. But I will write all the details later. I need a nap...now if Alivia would just cooperate and fall asleep.

Recent Pictures

explanation

Someone recently asked me to explain how Alivia's leukemia could cause organ damage (guess I've referred to that a few times and not explained it) so here goes (as far as I understand it).

When there are two many of the eosinaphils (the type of white cells Alivia has) the sooner or later will start to attack the organs. They usually fight disease but in this number they dont' have anything to fight off so they go after good tissue. That is one of the reasons we are constantly looking for shortness of breath, temperatures, lack of pee, too much poop, throwing up, strange eye movements, abnormal facial movements, other neurological abnormalities, etc. Officially in order to diagnosis Hyper Eosinaphil Syndrom/Chronic Eosinaphilic Leukemia you have to have the organ damage (one of the three criteria) but our doctor said he wasn't willing to wait for that (thank you very very much). It seems like most adults don't realize they have anything wrong until there is organ damage. That would be why they would go to the doctor and then find out that its leukemia. Unless you are getting regular bloodwork you wouldn't realize that you have to many eosinaphils until it was too late. In adults the prognosis is good as long as there isn't organ damage. Unfortunelty Alivia is the first one her age to have this kind of leukemia so they can't say what will happen down the road. Obviously we are hopeing for and praying for a miracle.

Hope that explains things a little better.

Quiet house

Funny as I was typing the words quiet house the phone started to ring...guess its not that quiet. But all of our company has departed (safe travels Marmie and Lisa). I love having a full house and always am so excited for guests. We had a nice time. Alivia was pretty shy around Marmie but at the end gave her a big kiss (which is an almost impossible thing. She doesn't give out kisses to many people. Marmie must be really special!) What a great way to end the visit. She thought Lisa was hilarious (which she is) and was a pretty happy girl most of the visit...few cranky moments cause she was so hungry for lunch and waiting an hour was very hard today.

We got some sleep last night (or I was just too tired to remember getting up) I was only up 3 or 4 times with her. Not bad...at least trending in the right directions. At this rate we could be back to twice a night in a few days. Not holding my breath though. Tomorrow is a big day and it starts early. Hopefully all will be wonderful and we won't have to start he Vincristine. That would be a huge answer to prayers.


Pray for...
...sleep (as always)
...no need for new chemo
...peace for James and I (our hearts get weary sometimes and we start to worry)
...those pesky teeth

thanks to..
...Marmie and Lisa for lunch and great visit this morning. We need to buy an Allen family jet so we can all get together at a moments notice. If we could just find a pilot....maybe one from California...any ideas, Uncle Mike?

Busy times

This weekend was really busy and really fun. My parents arrived Friday night and we all went out to dinner and then to the grocery store and then to blockbuster. We watched a movie once Alivia finally fell asleep. She was up at least 7 times Friday night (lost count after a while). Saturday morning we hung out and enjoyed Livi. Then my parents left for the wedding and we went to Target. When we were heading home we realized it was 5 already and thought where did this day go? Alivia fell asleep in the car and so we were late to the birthday party. We had a total blast at the party. Livi loved seeing her buds and cruising around. We stayed till 10. Got home, parents were here, James hit the hay, Livi cried for a long time in bed then finally I got her and she did fall asleep around 11, everyone else followed soon after. She only got up 3 or 4 times last night. Her poor gums are so swollen from the pre-molars on the bottom.

This morning we went to brunch with my parents (since we hardly had any time together yesterday) and then to PB outlet where my mom found an almost identical blanket to "THE" blanket!!!! WOO HOO. Thanks Mom!!! Good eyes. Livi was so excited when she saw it and was obviously fooled into thinking it was "THE" blanket. So now we have two! Yea. Alivia fell asleep on the way home and my parents headed out soon after. The actually passed my grandma and my aunt on the way (they didn't see each other though...busy looking for road marks to see where each other were). We had a nice afternoon hanging out and then went out for dinner (great food today but maybe a little too much). After dinner we came back to our house, gave Livi a bath and just watched her be cute. All in all a great day. My aunt and Marmie left for their hotel, Livi is asleep and James and I are going to spend some quality time together.

Thanks to...
...Mom and Dad for...everything
...Marmie and Lisa for coming to visit, bringing toys and dinner (Marmie)
...Phil, Lauren and Morgan Lapp for the card, stickers and lovely drawing by Morgan. We are again blessed by people we have never met. Thank you so for your prayers!
...Moriah Freeman for the card and stickers.

Pray for...
...the chemo to work so we dont' have to add other drugs
...a clear echocardiogram on Tuesday
...no signs of organ damage
...continued health and lack of side affects for Alivia
...teeth to come in quickly
...sleep for all of us

What is sleep?

I need to do some research and find out how little sleep it takes to make a person go crazy...because I'm sure we are close to the line. Livi was up at least 7 times last night and 8 or 9 the night before and every night last week. I truly don't' think its pain since either I give tylenol and it has no effect or since as soon as I pick her up she stops crying and only begins again when I try to put her back in her crib. Now I'm not asking for advice on how to get a baby to sleep. I know let her cry and she'll learn. But that is much harder to do. If she weren't sick I would most definitely do that but with her being sick I need to see if she is okay. I mean one of these times something could actually be wrong. So instead of advice just please pray that she starts to sleep more. I can handle getting up 2 times a night..or even 3. But this is just crazy.

My parents arrived yesterday around 1. It is so nice to see them (we haven't been together in 9 days!) Funny how it seems like ages since we were together I got so used to seeing them once a week. But it was good for everyone to have a peek at life in their own home and time that resembled normal. Before we got married James made a promise to get me home to see my parents once a month and he did just that. Now I can't imagine only seeing them once a month. That would be too hard. So we are trying to steal them from you Indiana folk. (so far not working at all but if we nag enough maybe they'll move just to shut us up....probably not but its fun to dream) We do have the cuteness card (Alivia) and we are playing it to its fullest potential. They are going Mike and Destiney's wedding today. (congrats!!! God bless your marriage). We are heading to a birthday party tonight and tomorrow Marmie and Lisa are coming to visit. So fun.

Thanks to...
...Krissy and James Evans for your unbelievable generosity. We don't even know you and you have blessed us so much. Thank you so much.
...Beth Altrogge for the sweet cards. Livi tried to eat the glitter!
...Rita and Grover Strickler for the sweet card and stickers.
...Mr. Ogoreuc for the stuffed bear. Thanks.

Please pray..
...that the chemo starts to work so we won't have to add another on Tuesday
...that the echocardiogram goes well on Tuesday and their are no signs of heart damage.
...no other signs of organ damage
...SLEEP

What now?

So todays visit was not a good one. Alivia did well but her white cell count went back up to 200. So we are uping the dose of hydroxeuria again and we'll see what that does over the weekend. If by Tuesday it isn't working we will start Vincristen (spelling might be off) that is an IV chemo and frequently used with Hydroxeuria. In the next few weeks we will be going to get a central line put in. We are getting a broviac (spelling again) which is the type of central line where tubes are always hanging out of the chest. That will be in for up to a year. The doctor called this evening and said one of the reasons for doing it is so that it is under controlled circumstances instead of an emergency. And most kids lose their hair with this new med. I know this is only temporary and it will grow back but that is something I just didn't want to face. As she is now I can look at her and pretend sometimes that she isn't sick. Once the hair falls out it will be hard to pretend.

pray for..
...the WBC to drop over the weekend (if they do no new meds)
...all of the adults (me, james, my parents, james' parents) we are not dealing with this set back as well as Alivia.
...wisdom for our Doc (he feels stumped by this and suprised that it hasn't started to work)
...a miracle

thanks to Tina for the great dinner...it was nice to come home and not have to cook.

Missed a day

Yesterday was a busy day. We spent the afternoon with Ang (so fun!!!). April Spinetti stopped by to drop of a meal (again...you are such a good friend!). I had a hair cut last night (trim) Thanks Darcy! I always walk out feeling great. And then it was bed time. The day flew by and I didn't sit down to do the blog.

Yesterday we did half a dose of the anti-nausea and it seemed fine so today we went without. So far so good but its only be 45 min. Hopefully eveerything will stay down.

Now I must share a story that Alivia is going to hate that I shared (when she's about 14). Yesterday I was giving her the daily bath and she was having a good old time splashing around when she tooted. Well this was a little more than a toot. She got a huge smile and her face and then I realized there was a little treat in the tub! I have never pulled her out of the tub so fast in my life. (after a moment of panic of course). So I emptied the tub, antibacterial scrubbed the whole thing, filled again and we started the bath over. See I said yesterday was a busy day. (Now Alivia when you read this someday don't be mad at mommy...it was just so cute I had to share and anyway everybody poops!). She was totally unfazed and even thought the whole thing was a big joke.

Today we are just laying low since tomorrow is doctor day. Hopefully things will continue to go well. I am trying to find another blankie so that we can rotate but Pottery Barn discontinued the line and so far none of the outlets have one. But I'll keep calling I have a few more to try. (6 to be exact)

Pray for...
...continued dropping WBC
...quick visit tomorrow (its not till 3:30 so its going to be an interesting visit. At least she should get her morning nap)
...everything to stay in her stomach and no need for the anti nausea meds after today
...that someone has another blanket for Alivia (we are searching every store we go into as well as the PB outlets....no luck so far)

CBC

Bright and early this AM Livi and I headed to Heart of Lancaster Medical Center for her bloodwork. I thought we would be in and out really fast but there were already about 5 others waiting. It took a while (with only one person drawing blood!) but they did a great job and there was minimal crying...good job Alivia!! So then the waiting began...Oh I am getting good at waiting. I was nervous last night but today just felt at peace.

Around 1 the nurse called with the results and said the WBC were down to 140! Thats over 60 thousand since last Thursday. Yes we have had big drops before but hopefully this trend will continue. Her RBC were stabil and her plateletes were down more. So we might have to do a platelet transfusion at some point (we've done one already). But overall very positive news. I am relieved and happy.

I realize I have been terrible with thank yous over the weekend. Sorry about that. Let me try and get them all in now...if I forget you sorry ahead of time.

Thanks to...
...Eden and Aksel Y. (and their amazing parents)for their cute package. Eden you are a little artist. We love the pictures you colored. Livi put the ladybug right in her purse! We love you guys and are so blessed by your friendship.
...Alayna Shoenfelt (and Dave, Jen, Jacob and Evan) for the cute drawing and the really fun colorwonders markers. We've already used them and learned a lesson in sharing them.
...Ann Parrow for the card (which Livi actually laughed at loud at) and the stickers.
...Mary Ann Kisic for the thoughtful note and stickers.
...the Millen family for the stickers and note. We will have to teach Livi to say Anna.
...Samual and Grace for sharing your toys with Alivia today and April for being the great conversation. I look forward to our times together all week.
...The Lapps, Sentzs, Jeremy Landis and John, Chris and Will for the fun the other night and for leaving the chocolate cake here (Tina!)

The stickers have been such a blessing so thanks to anyone who has sent them (again!) there are days when we have spent 45 min just putting stickers all over eveyrthing. She loves them.

Scary Blessings

Today was a day of blessings that came out of extremely scary circumstances. My little brother (he's 20 but still little to me) was in a horrible car accident. The officers said he should have died. If he hadn't had his seatbelt on he would be dead right now. But God spared his life. He was driving to work (not speeding I must add) and hit some water and hydroplaned. The car turned sideways, went off the road and rolled, hit a ditch, went end over end and sheared off a metal road marker. It ended upsidedown and Aaron was able to climb out the back window (because it was gone). Aaron was able to call my parents and Andrew (my other little brother) who rushed to the scene. Aaron got checked at the hospital and besides being stiff and scrapped up he is okay. The car didn't fair so well. It is totaled. My parents were collecting some of the stuff that was in the car before it was towed away and couldn't find my dad's umbrella..they finally did find it 50 yards away!

Our family is a close family. Yes we disagree at times. But the Allens in general are a tight group. You have to understand I would do anything for my brothers. I love them so much. Aaron being the baby of the family was born when I was 7. I thought he was mine. I wanted to take him everywhere with me and almost gave my grandmother a heartattack because I carried him up and down the stairs (sorry about that Marmie). We have had our ups and downs over the years but they always always filled a special place in my heart. Just thinking of one of them being hurt brings me to tears. We are all so incredibly relieved Aaron is okay.

Aaron and Andrew I love you guys. Even when we are fighting or getting on each others nerves I would not trade you for any other brothers in the world. I love how you are with Alivia and how much you want to make her happy. I would do anything for you and am so thankful that God made us siblings. I'm praying for you both.

Market

Last night was so so so bad. She woke up every 45 min crying in pain. Another molar on the other side (took me till 3 am to realize). Finally gave her a whole dose (I'm wild I know) of tylenol and ora gelled her entire mouth. And we got sleep. Poor munchin. Such a normal little girl. God obviously lets us get teeth as children since we won't remember it. Can you imagine an adult getting their teeth in....oh the whining that would cause. Kids are so much more resilient than us adults. They can bounce back from liver biopsies and be happy kids the same day.

We went to market even with a little drizzle. Livi had a good time and now is taking a nap...I should probably be doing that too...but I'm waiting till her afternoon nap to take one. Its a good napping day. We're having some friends over tonight. I'm very excited.

Pray for...
...the chemo to work
...my neck. I did something to it in the hospital and it has been stiff every since. I keep reinjuring it somehow.

Stock tip

Just wanted to let everyone know that if they are thinking of buying stock and aren't sure what to buy try Bath and Body Works. I am single-handedly boosting their sales by buying stock in anti-bacterial stuff. I got soap, wipes and gel. Thankfully they were having a sale and it was 5 for $10. Not a bad deal. They make these great wipes that come in a handy-dandy little container that fits in my purse so I can wipe down the world when I'm out in it.

Livi had another rough night. The tooth (or is it teeth..I'm so out of the loop!) was still hurting her. I'll have to do a good check of the mouth before bed tonight to make sure that there aren't any new ones emerging. We tried out a new schedule for the chemo that was so much better. The doc said it didn't have to be first thing as long as it was in the morning. So we got up, ate breakfast, played for an hour and half, took the anti-nausea med and played for another half hour, then took the chemo and she was ready for a nap. That way she didn't even realize she was waiting to eat. So much easier. Love the new plan. We are going to try one day without the anti-nausea cause the doc thinks she should be okay and one less med is always nice. So we'll try that one day next week when we dont' have anything planned. Maybe Monday after the blood draw....bad day anyway whats a little nausea. I'll have to give it more thought.

She is chattering up a storm. I love it. She and I did some errands and she is just so happy to be out and seeing the world. At one store they gave her a balloon which pretty much made her day. She took really great naps (after last night she probably needed them) and has been just a joy. I love her more than I can put into words. If I'm with her I'm happy. Tonight we are just hanging out as a family. James is so good with her (and me...I am blessed). We got some movies for after she goes to bed and are having a great evening. Even the rain can't put a damper on it.

Tomorrow AM we are going to market with Jamie. We love market time. Its just all around fun and Livi loves looking at the people and colors. I may or may not write tomorrow. If I don't have a great weekend. Enjoy life, don't take a second for granted, know that it could all change in the blink of an eye. Breath in that baby smell, or big kid smell or spouse smell and be so glad that the smell the way the always have. Livi smelled a little like herself today and I just soaked it in and cried tears of joy. Didn't realize how much it ment till it wasn't there. It's gone again but those few moments were so good for my heart.

Frustrated

I am trying to remain positive. We had our doc visit today and Alivia's WBC count was up to 200 AGAIN!! So the chemo hasn't started to work yet. GRRRRRR. I want instant results (thats impatience if your wondering). Also her blast (the bad white cells that are big and sticky and make your blood thick and cause all kinds of problems) percentage is up and so now we have to up the dose of chemo and also get her blood checked 2 times a week. Poor baby. I hate getting her blood checked. At least the one check is going to be in Lancaster so it won't be a whole day affair. We can just run up the street to the hospital (less than 5 min away)and have it done Monday mornings. If the blast percentage continues to rise then we will have to do florisis (I can't spell so thats phonetic). That is when they place a needle in the groin area and take out her blood, filter it and put it back. We would be back in the ICU if that happens. Also if that happens they will put in a port (the access to a vein that stays in for a year). That will change our lives pretty drasticly. I will have to learn to take care of it and she will have to learn to sleep on her back. It is good because they always have a way to get blood or give meds but it opens up a whole new way to get infections. Very scary to me.


Oh and we found out why she had a fever and was so fussy. She has a molar. It is poking through the skin. No wonder she was such a crab. I didn't even think to look for molars. She only has 4 teeth in the front and now this one. Very weird. I have to give the pediatrician a call and see if that is something we need to worry about. Another thing for the "list".

A good friend asked us to a birthday party for her daughter and I went to check my calendar and realized I have nothing planned for the entire summer. If you know me you know this is very unlike me. I am social by nature. I love hanging out and having parties. But it is currently impossible to plan anything. We never know from week to week where we'll be. That is something I really look forward to when this is all over. I am going to throw the biggest party ever and invite everyone and celebrate that my girl is well. That is my dream, that is my goal, that is my daily prayer.

Thankfully Alivia did really well today. She even let the doctor listen to her heart without screaming. She has let others listen but never the doctor. Usually the second he walkes through the door she starts to scream. She also let them take her blood pressure, her pulse oxygen (98% thats an A+) and take her weight (I understand why this one makes her cry...no women wants her weight taken). Still cried when she got measured and when the doctor looked in her mouth and ears and felt her lymph nodes. But there were definetly improvements. She is starting to learn what actually hurts and what is just scary. What a big girl.

Thanks for today
...Cynthia for going with us and keeping us company
...everyone who is praying

Prayer requests
...lowered WBC count
...continued good reaction to chemo (we are going to try one day without the anti-nausea meds to see if she can do without it.)
...lowered blasts
...good sleep now that the tooth is in.


Just heard back from the pediatrician...he said that this is a normal variation on for the teeth. Woo-Hoo something normal.