Fiji, anyone?

Fiji is warm and sunny and the beaches look amazing. There are no doctors to say Alivia is sick, or take her blood, or schedule another bone marrow biopsy. And no one there will offer meds that might kill her or bone marrow transplant. Just fruity cocktails and suntan lotion. So I'm moving to Fiji. Anyone want to come along?

Livi's counts all stayed pretty much the same. Her plateletes were up a bit but otherwise pretty much stable. I get excited about stable but it turns out stable isn't really that great either. The levels still aren't normal. Our doc heard from Arcici (Hopkins bigwig) and he recommended another bone marrow biopsy (on September 12th). From that biopsy they will run all the citogenetics (AGAIN) and test for AML once again. Then they would like to either start treating for AML if she has it or go straight to bone marrow transplant. (read with tears in your eyes). I can't even believe I'm having conversations like this calmly. Inside I feel like I should be shaking the doc and screaming "this is my baby your talking about!! how can you calmly go through options that might kill her!?!" I guess the rational is that at some point her bone marrow may stop working all together and it would be better to transplant before that happens. Next week when they take her blood they will take a bit extra so they can get her into the registry to start looking for a match for her. He said that doesn't mean we will definetly do the transplant but matches can be hard to find so its better to start looking now. I may be asking a big favor of all of you soon. If she needs a transplant and none of her family matches we will have to search for a match. None of this is set in stone yet but it feels likes its creeping up on us. I told the doc that we wanted to at least try Glevace first and he said that would be fine and they would start trying to get it into liquid form. Also they might give some steriods and maybe vincristine to try to do everything possible before transplant.

I know that God is in control and that I'm not supposed to trust in what the doctors are say but instead trust that God is in control but it sure is hard when they are saying words like "fatal", "death", "highest levels of chemo", "kill the bone marrow".

Here are the very specific prayer requests...
...bone marrow biopsy that shows all is well
...counts that are NORMAL not just stable
...some new test that shows nothing is wrong
...healing.


Thanks to
Jill Wilson and Sue Minich for thank you notes

This is my last plea for thank you notes. Folks if we can spend one day a week at the hospital you can spend 5 min writing a thank you note. Please do this for me, James and Alivia. If mailed tomorrow I will get them Monday. I am fully expecting to see a ton of notes in my mail Monday or be handed a bunch on Sunday. Our address (one last time) 2768 Lititz Pike, lancaster, pa 17601. I'm not sure you realize how much this means to me, to everyone who has done it already thanks times about a million.

Most recent tally
Janiece- 39
Holly- 39
Lois- 40
Chris-39
Cindy- 43
Carol- 41
Joanne- 40
Maritza-41
Denise-43

Been a few days

We have had a very nice week so far. Livi has been back to normal..no fevers, no teeth that I know of. Monday was a rough day but I think it was because there was no one else to entertain her but me. She's had almsot constant attention for a week and a half. Time with just mommy was a little boring for her. But by tuesday she was adjusted. We spent Tuesday with my good friend Ang. I love time with Ang and wish it was everyday. We also got a great suprise when we ran into Tina and Owen and they joined us for lunch. So great (and so normal). Livi and Owen had a good time sitting by each other at lunch...although Livi kept teasing Owen with her cookies. She must have a little crush. Then today we went out with Sonya. We painted some pottery (Mom your cup is going to be ready next week!! don't break this one...ha ha) and then Sonya brought her new puppy to our house. Livi wasn't so sure at first...he had a lot of energy but once she got used to it she loved it. Thanks for the fun Charlie Brown. This whole week we have spent our evenings with Erin. I love having her around. And its been super nice cause James has been working late (till 2am on Monday and 9 on Tuesday). I'm trying to show her the sights of Lancaster and I really hope she falls in love with it. Sorry Indiana folks...I'm trying to keep her here.

Tomorrow is our appointment. I can say I'm not totally nervous. Maybe because I've stayed busy and not thought about it. But she hasn't had more patecia and her coloring is good. So maybe tomorrow will be great. That's what I'm praying for.

Just a reminder I need all thank you notes ASAP! Even if we have never meet, you have never commented or I don't even know you are writing please please please do this. If you send it before Friday it will be her in plenty of tie.

Thanks to..
..Marmie for the card to Alivia
and thank you notes from Audrey Drago, Briana (and the lotions for the nurses), Beth Altrogge, Amanda Kim (and the sweet book for Alivia), and Leslie Malito (and the Starbucks gift certificates for the nurses, the pink elephant and stickers for Alivia...by the way I tried to call you and the number I have didn't work...please call me soon I would love to talk to you.)

Pray for tomorrow. Thanks

Weekend

We had a good weekend. Went to Market, out to eat, went to church and had James' brothers over for dinner last night. Also, Erin W. moved in with us for a bit. She just moved to the area and is staying with us for a few weeks..should be a lot of fun.

After dinner we decided to go to the park and feed the ducks...just as it started to rain. So we went anyway and hung out in the gazebo and feed the ducks from there.

Thanks to Gina Plain for the stickers, Aunt Joanne for the cool book and Grover card, and to Hailey Herr for the card and stickers.

Thank you cards from
Adelie Plain, Sarah Herr, Amy Knutsen, Carol Landis and John Haughery.

Good to go.

As this is the third time I have writen and tried to post this blog I will keep it short. Not sure what I've been doing wrong. Maybe the lack of sleep is finally catching up. Even though we did get some sleep last night. In fact there was one stretch of 3 hours of uninterrupted sleep. Never thought I would get so excited about 3 hours but being a mom changes everything.

No fevers all day, the nurse called and all cultures where clean (no infection) and we don't have to go back to the doc till next Thursday. Nice to hear. My dad packed up his car, kissed us good-bye, got in his car and drove away today...only to return 15 min later since he missed his 3 favorite girls. He said he needs to take at least one of us with him and since we are holding my mom captive...he HAS to stay. (our little plan worked after all...just kidding) I'm so glad he's staying though.

He took Alivia for a walk this morning...this is what happened....

Guess when you get up at 6:30 am you have to expect some morning naps.

She did take a great afternoon nap...besides waking up briefly when ever fire truck in Lancaster county drove by our house with sirens blaring.

I want to say a huge thanks to Ryan and Hollis M. for the gift cards to the nurses! I love it. Thanks. I am getting more and more excited to give them out.

Over the last few months so many have said "how can we help, what can I do, anything you need, just ask". Well folks I'm asking. I know there are still a lot of you who read this and haven't writen a note to the nurses. That is what you can do that will help, bless and serve James, Alivia and I. Just pick one name, take 5 min, write a thank you note and send it to me or hand deliver it to me on Sunday. I know you may not know these nurses but they deserve all the thanks and encouragement we can pour on them. So get those pens moving! I need them by the end of next week. Our address is 2768 Lititz Pk. Lanc, PA 17601

Here is the latest tally...
Janiece- 33
Holly- 34
Lois- 31
Chris- 31
Cindy- 33
Carol- 32
Joanne- 32
Maritza- 34
Denise- 36

Thanks ahead of time for your help with this.

2 cute pictures

I wanted to put two cute pictures from yesterday at the hospital. A little story I forgot to tell was about benadryl. Sometimes they give it to kids before a transfusion so they won't have any reaction to it. I couldn't remember if she had it the last time so I said we'll just give it to her (and it makes you sleepy which would have been nice). Well she hated it. Usually she is so good with taking meds but she was tired and out of sorts and benadryl tastes so gross. So after crying and spitting for a bit she put her fingers in her mouth and gagged herself. Out came every last drop of the meds. Oh well. We decided to go without it. And everything was fine. These are the pictures of us at the cafeteria, Livi is sporting her hospital issue gown (since she threw up on her clothes) and her new favorite hat that Grandpa bought for her (thanks Dad!). She is pointing at a giant grasshopper that was on the outside of the cafeteria window. Cute, huh?!


We had a nice morning with my parents today. Mom got her hair cut by Darcy (she looks great) and now we are all home and everyone is in bed. I think I'm heading that way too. Last night was really hard (by hard I mean she was up at least once an hour) again and with no nap yesterday it made for a long long long night. She is napping now and I'm hopeful that it will be a good nap (she's been so tired all day). No fevers so far today and that is amazingly good. We haven't given her tylenol since about 1 am.

My dad is heading home tomorrow (we will miss him terribly) but we get to keep my mom/ Gigi till Sunday. YEAH!! Hopefully we'll have a relaxing, doctor-free few days.

Home!!!

Thank God we got to come home today. We went to the hospital and they took a blood sample to culture. (put in a petri dish and see what grows over the next 24-48 hours). They also did her CBC and suprisingly her WBC's were lower than last week (21.3 to be exact!) Amazing. No idea why and don't really care why just so thankful that they are. Here plateletes were low (19.3) but they won't transfus unless she is getting nose bleeds and such so that was nice. But we did get a red blood cell transfusion since her hemaglobin level was 6.8. So we spent the afternoon in the big transfusion room.

It was a long day...made longer by the fact that Alivia got up at 6 am and only napped on the way to and home from the hospital. Craziness. Needless to say she is so tired now but still fighting sleep. All of us (my parents and I) are incredibly tired, we're all running on caffine right now. We are just supposed to watch her over the next few days. If she has any kind of fever on Friday we will head back up for a test to find out if she has a urinary tract infection. Other possibilities are just a fever from the teeth (she's getting all 4 I-teeth) or some sort of virus that will just run its course.

The new prayer requests...
...continued lowering WBC's
...increased plateletes and red blood cells (without transfusion or other intervetion)
...fever to go away on its own
...nothing growing on the culture
...wisdom for the doctors
...some sleep for all of us

Thanks to...
Sarah Sams (funny not saying Allen, cousin) for the super cute sweater...wonder if I can get it in my size. Livi enjoyed throwing the stickers all over the place, too.
And thank you notes from...
...My Marmie, Ed and Sue Moore, Jill Piper, Tina Wenger, Sonya Long (thanks for the stickers and getting our husbands together while I was gone. James enjoyed the company), The Cranmers, Peter and Micah Wenger, Shannon Michalski and Sarah Sams.

Only a few more days till I am going to start putting the gift bags together. So please send all notes ASAP. Thanks.

Here is the most recent count
Janiece-31
Holly- 33
Lois- 29
Chris- 30
Cindy-30
Carol- 31
Joanne- 30
Maritza- 33
Denise- 34

Wednesday

We are headed to the hospital. Please pray! Alivia has a large amount of peticia on her feet. So we will probably need a transfusion. Not sure what that means right now. I'm sick to my stomach with nerves. Pray pray pray

Update 2

This afternoon was pretty calm. Alivia took a nap and during the nap her fever finally broke. Thank God. We also made an executive decision to go back to Lancaster tonight. It has just been so stressful the last few days trying to figure out if we should stay or go and it seems like it would be easier to just be home. Besides I miss my husband terribly! So my parents, Alivia and I are leaving Indiana this evening around 8 and they will stay till Thursday. So even though we won't be in Indiana we'll still be together and we'll find ways to have fun in Lancaster. It will be good for Alivia to be back in her own bed too. Maybe she'll sleep a little better...meaning maybe I'll sleep a little better. We are pretty sure that the fever was just from teeth...all be it a little high for teeth...they are the hardest teeth to get in. The nurse said that if the fever was from infection then tylenol wouldn't affect it and she would still have the fever even with meds. We are so thankful to God. Funny how a few little numbers change the whole mood of the day. Wish I could be more of a rock in this and lean on the Lord even when the circumstances are scary. I am praying for more faith, trust and patience through this whole ordeal. I could use a healthy dose of all three.

Thanks for your prayers they mean so much to us and please continue to pray that the fever stays down and for a complete healing (of course)

Update

We are still in fever town. So extremely stressful and worrisome. I am tired and nervous. My morning nap wasn't that great. I couldn't sleep so I read half of Job and Mornings and Evenings. Then I did get a short (20 min) nap. My grandma and aunt came for lunch and Livi did pretty well. She was tired since she got up at 7 (an hour early) but she got a second wind and stayed up till 2. She is now sleeping and we are all going to try to nap also. I have spoken to the nurse a few times and she suggested watching it and seeing if it stays above 100.3 for 4-6 hours. We aren't there yet but we also aren't normal. Please continue to pray. If it doesn't come down we are going to leave for Lancaster this evening and go straight to the ER at Hershey Medical. We are crying out for healing. I know this is always our plea but right now its just healing of this fever. Please pray it is because of teeth and breaks soon and not because of an infection. Thanks.

Last night

I just wanted to write a quick blog before I take a nap..I know its 9:30 am but if you had a night like ours....naps are a must. Last night was a really rough night. Livi actually did great...but that was probably because her fever wiped her out. She had a temp of about 100.8 around 9 last night and I called the doc right away since I didn't have all my "what-to-look-for" sheets with me. They said to take it again in 2 hours and call if it was still over 100. Well in 2 hours it was only 99.3 so she went to sleep and I tried but couldn't. I think my parents got some sleep then too. I was expecting her to wake up and need a bottle around 12:30 but it came and went and she didn't wake up so I check and her temp was 99.8. So I feel asleep. She woke up at 2:30 and wanted a bottle and I (of course) took her temp and it was back to 100.5. She was very awake then so we watched a movie till 3:15 and then she finally feel back asleep but by this time I was a nervous wreck. I just didnt' know if we should head home in case we needed to go to the doctor. So through my tears I cried out to the Lord to give me a clear signal of what to do and I felt like I was to wait. And so I decided to take her temp one more time and then wait 2 hours. It was only 99.1. All this time I didn't give tylenol cause it would "mask" the fever and the docs need to know what its doing. Every 2 hours I got up and took her temp. It was always around 99 so it was good that it didn't go back over 100. We think it is from the I-teeth that are coming in....because other than the fever she is pretty normal...still a little tired but that makes sense. So we are watching her. She was chewing her tongue and cheek and must have bitten it pretty hard cause she made it bleed. Thankfully it clotted which is a good sign for her plateletes.

Please pray for us. We need wisdom when and if we should head home (looks like it might be tomorrow now). The sleep deprivation is making me very emotional and I need to have a clear head...thus the nap. Pray that she doesn't have a fever anymore, that there isn't an infection (one of the things we are always on the look out for), no more petekia (going to spell it differently each time till I figure out how to spell it), that her cheek heals quickly and that we make wise choices what to do next.

I am definelty struggling with the timing of all of this. My desires of a relaxing week with my family aren't coming true. Pray for my attitude. I want to be thankful for every little thing instead of focusing on what I'm not getting. Thanks

Boating

Today we went on a boat. My uncle Aaron works at the boat rental place and so we got to go for a ride. It was pretty fun. I think the adults had more fun than me (can you tell by the look on my face?!). I decided not to take a very good nap today so I was a bit more tired than usual. But it was still pretty cool. Mommy loved it. Here is a picture of me with Gigi, Grandpa, Jan M. and Uncle Aaron. I'm still at Grandpa and Gigi's house. My peticia didn't get any worse and I don't have any bruises (which I get very easily when my plateletes get low enough to need a transfusion). Keep praying though cause another transfusion means more medicine and maybe a stay in the hospital which I don't like one bit. Thanks.
*Alivia

Sunday in Indiana

We had a busy day today. We went to church, I took a nap and then we went swimming. But somewhere between church and swimming it got pretty cool outside and so my lips were blue and I didn't want to be in the pool for very long. Here is a picture of me and Grandpa and Gigi. I love being at their house.

Please pray for me tonight. I haven't been sleeping more than 45 min at a time and everyone is pretty tired because of it. Also Mommy thinks I might be getting petecia again and if that is true we will be heading home tomorrow.
*Alivia

Birthday

Today we celebrated my favorite uncle (at least for this week!) Aaron's birthday. He makes me laugh and I love him a lot. The Steelers pre-season is on and I am watching it with my uncle and grandpa. Go Steelers.
*Alivia

Vacation with Grandpa and Gigi

Grandpa bought me a new toy and I just love it
Here I am trying it out on the back porch.
Love, Alivia

Woo Hoo

I am writing from my parents basement..thats where their computer is. We had a great visit today. Here are her numbers for today before I get ahead of myself
Hgb-8.0
Hct-25.7
RBC- 2.65
Plateletes-44
WBC-22.6

Our doc said it was pretty stable and he couldn't justify doing anything if doing nothing was working so well. So we don't have to go back for 10...count them...10 days. That is so unbelievable. Thank God (over and over and over again!). Everything else is the same as last week also. The only thing he noticed different was the gallop in her heart (because of anemia) although still present is not as loud. Very good.

Our trip home was great. And I am just so relieved. God is so faithful.

After Monday

Things have most definelty gone uphill since Monday (how could they not?). Yesterday was spent with our sweet friends (April, Samual, Grace, Leslie, Eden and Aksel) eating lunch family style (big Lancaster county favorite) for my first time. Lots of laughs. Not sure I'll be doing it again anytime soon but an experience all who come to or live in Lancaster county must have. I found it bizare. I definetly don't understand why people love it some much, I like going out to dinner so I don't have to have just one thing and pass around big dishes. But to each his own. After, we went to the playground behind the resteraunt and visited the horses, goats and sheep. All the kids loved it and wanted to help feed them (I had some corn in the car from feeding the ducks). That evening James and I decided to use a gift certificate for dinner and so we headed to Bob Evans. Alivia wasn't in the best mood (teeth still) but she did pretty good and since we were close to the family style resteraunt I wanted James to see how much Alivia loved feeding the animals. Didn't go as planned to say the least. We got there and there were a lot of other people there. Then we went to see the sheep and realized one was injured and bleeding (the vet showed up shortly after we did) so that ruled out feeding the sheep and the goats are in the same pen so they were out too. Then we headed to feed the horses. All was going well until the biggest horse sneezed right on Livi and I. She freaked. I must say it was rather gross. We got her calmed down and left quickly to have ice cream and redeem the evening. Got to the ice cream place and realized they only took cash so we had to walk to a near by gas station and get some money. Regardless we had a good evening being together and James and I had a good laugh at the mishaps.

Today we decided last minute to go to April's house and see "the kids" (as we call Samual and Grace). I was running around getting things done and decided to put Alivia down in the dining room. She was standing holding onto one of the dining room chairs. I thought she would just stay put (like usual) but she managed to push the chair into our mudroom. I had stepped out of the room when I heard a huge crash...then crying. I ran into the room and realized she had pulled over a shelving unit in the mudroom! Thankfully she was completely unharmed...amazing since there was something glass on each shelf! So I calmed the crying, cleaned up all the glass and we got in the car. We arrived at April's and Alivia managed to fall twice in the yard before we even went inside. She is becoming much more brave (yea!) and trying to sit without help. We get inside and she was excitedly walking around their little table when she fell (AGAIN) and this time put her tooth through her lip. Lots of tears later she recovered and enjoyed the rest of the time with the kids. I was very scared when she cut her lip because of the unknown platelete level. Thankfully it clotted really well and besides a small cut you can't even tell. After a great time we headed home. Alivia feel asleep and my friend Ang stopped by. I loved our time together Ang...thanks for the help redecorating! This evening we went met my parents at a hotel and went swimming. They just came straight from the road to the pool. I'm so glad they are here and that they got to have a fun evening with us before spending the day in the hospital tomorrow.

I tend to ramble when I'm nervous and I am extremely nervous about tomorrow. I have had some sleepless nights this week. The other day I told James it almost feels like it would have been better to just be hit with the news of AML right off the bat. At least then you are able to enjoy your life up until that point. As it is now we are anticipating something that might not even happen. We have no idea what to expect tomorrow and that is so hard. I don't know what to prepare for. Not that there is anyway to prepare for this whole thing. So I have packed to go to my parents and I am praying and hopeing for that. All day long I just repeat over and over "God please heal my baby". Its not eloquant or deep but it is the desire of my heart and I am laying at His feet (over and over again). I'm desperately praying that the next time I update will be from my parents computer and not from the computer on the 7th floor of Hershey Medical Center

Pray for us tomorrow. pray that Alivia's counts are good (low WBC, increase plateletes and RBC).

Someone asked me to re-post the normal ranges from all the blood cells so here goes.
RBC (4.0-5.8)
Hgb (11-14) and Hct (32-44)
Plateletes (140-340)
WBC (6.0-17.0)
and to give you an idea of where we are here are her numbers for last week.
RBC- 2.65
HGB- 8.0 and Hct- 25.7
Plateletes- 42
WBC- 19.3

A big thank you for all the thank you notes I recieved from:
Heather Rice, MaryAnn Kisic, Leslie Yoder, April Spinetti, Brandi, Aidan, Autumn and Austin King, Linda Dreidger, Krissy Evans, and Laura Carroll.

I won't have updates on the number of notes and who they are from until next week when I get back from my parents! So here are the numbers for now..
Janiece- 24
Holly-27
Lois-23
Chris-23
Cindy-23
Carol-23
Joanne-24
Maritza-24
Denise-23
Keep them coming.

I've got a case of the Mondays

Today was a rough day. It started earlier than usual and I was awoken not the the sound of a babbling happy baby but to a very unhappy, crying girl. And the crying didn't stop all morning. She didn't eat well and everything was upsetting. She would finally stop for a few seconds and I would move an inch from where we had been and it would all start again. Instead of turning to God, I ran head long into all the worst thoughts. Increased crankiness is a sign the doctor is always looking for so my thoughts were of all the horrible things this crankiness ment. Then I noticed what I thought was an infections and had to call our pediatrician. Thankfully he was able to ask a bunch of questions over the phone and calm my fears (and as the day progressed I realized I had over reacted and it was nothing). Everytime Livi cried I joined in. I have tried desperatly not to cry in front of her. I don't want her to be scared by my tears, but today I couldn't seem to cope. Needless to say our house was a bit of a mess. About 11:15 she was screaming once again and wanting to eat but then freaking out when any food was in her mouth and I started to wonder if she had mouth sore (another sign) so as she was screaming I layed her back and looked in her mouth and spotted the problem....TEETH!!! She is getting her I-teeth and is was so painful that she was miserable. So we had a very normal mommy moment. Here I am convincing myself that these are all signs of worsening leukemia and instead it is something every single mom encounters. So after some tylenol and ora-gel I had my girl back. She was her happy self once again. She ate a great lunch (since she had all but skipped breakfast) and was so wiped from all the crying that she feel asleep in her high chair. I put her to bed only to have her wake up miserable a half hour later. She was completely soaked. Over the last few weeks we have had great success with figuring out how to get her not to sweat so much at bedtime and naps. Most it involved fans a the right angles and sleeping in diapers only. Yet again I read into the sweating and started to cry...until I realized the fan wasnt at the right angle and I had put her to bed with her shirt on. I got everything right and she slept for a few more hours.

Where is my trust today...obviously in my own perceptions (which have all been wrong) and the words of the doctor not in God. I just let go of all the truth I know and ran to myself. What a mess. What a wasted day. And yet there were little blessings all around. My friend Leslie called at just the right moment and listened to me cry. My friends Ang and April both offered sweet words. We got dinner (which I forgot was coming!) and my lovely husband took Alivia for a nice long walk so I could have some time alone. Then this evening we got to see our friends Jeff and Leslie (she's everywhere today!!) and it was so nice to be normal (crazy) people for a bit. Here I am wallowing and yet God is blessing me anyway. Oh I don't deserve it.

Thanks for today
The Buntings for a great dinner...when chicken alfredo is done right (and boy can it be done wrong)...but when it is right...oh do I love it. I must get the recipe so when I start to cook again I can wow my husband (who also loves it). Perfect choice.

Thank you notes from...
The Buntings, Jeremy Landis, (Uncle) William and (Uncle) Chris Haughery, Carol Schloemer, and Rachel Kennedy

Here is the tally for thank you notes.
Janiece- 17
Holly- 22
Lois- 19
Chris- 17
Cindy- 18
Carol- 19
Joanne- 19
Maritza- 17
Denise- 19

Just a Reminder

I wanted to remind everyone that is reading that I would like to have each and every one of you pick at least one name from the following list and write them a thank you note. I am collecting letters until August 31st so there is still plenty of time. (this makes a great homeschool project!)

Here is the updated list of nurses (and Janiece the child life worker) and how many notes we have so far. What an amazing example of God's love this will be. And what a great way to show them just how much their time, patience, kindness and hardwork is appreciated.

The updated list is
Janiece- 15
Holly- 19
Lois- 16
Chris- 15
Cindy- 14
Carol- 16
Joanne- 17
Maritza- 15
Denise- 17

And here are MY thank you's for this weekend
..the Lutheran Ladies Aid of Commedore for their sweet note and gift..but most of all for thier prayers!
..the Pete's (my uncle and aunt) for the cutie-patootie clothes (Livi loves the mouse on the PJ's) and the gift. We love you so much and hopefully all will go really smoothly this week and we'll be in Indiana next weekend so we can see you.
..Lisa for the great dinner and the great story. It was so nice to meet you Bev (by the way I think you might be honorary-Amish now!)

And thanks for the thank you notes from..
..The Pete's
..Aunt Lisa
..Diana Bennett
..MaryAnn Plesnicher
..Carli and Eboni Freeman
..Zachary, Nathaniel, RuthAnn and Melanie Millen
..Sara Rankin
..Bekah Walker

I am so greatful for all these letters of thanks. Amazing.

Sleepy Friday

Everyone (except me... and James who's out working) is taking an afternoon nap. I may lay down when I'm done here. Livi is getting another tooth so last night was a bit long. But my parents let me sleep in so I feel pretty good.

Tonight James is taking me on a date...we haven't gone on a date since this whole thing started. I must say I'm excited and a bit nervous about leaving Alivia. But she will be in the best hands possible...my parents. They will spoil her and she won't miss us a bit. The whole thing will be harder for James and I than for her.

I don't know if people were reading back in March (before Livi got sick) but I collected quilt squares and had planned to make a quilt...things got pretty busy right after her birthday (wonder why) and I didn't get the chance. So my wonderful friend Nora offered to do it for me. All I had to do was box it up and send it to her. I'm happy to report...I finally did. So thanks ahead of time to Nora for doing this for me. It means so much and I am so excited to see how it turns out. Nora is about a million times more skilled at sewing than me so it will be better than I could ever do.

Also we had planned since we first move into this house to turn the closet under the stairs in the living room into a little play area. We wanted to get a mural painted on the walls and make it really cool. James had to dry wall and hang a light and such and it just wasn't top on the list. Since Livi is getting closer to walking we decided to just get it done. And this week Cori B. started to paint it. It looks so super cool but I want to wait till its all done then I'll post some pictures. Thanks so much for all the hard work Cori! We love it and Livi thinks watching you paint is the greatest. After you left today she just wanted to go in there...we had to hold back since the paint isn't dry. But I can tell she is going to love it when its all done.

We're just moving along. Who knows what next week will bring but for now we are enjoying every little thing that happens.

Thanks to..
Lori Heitland (and family) for the books and stickers. Livi hasn't seen them yet (napping) but she will when she gets up and she will love them. The unwrapping alone will be so much fun.
Joanne Kinderwater for dinner last night. We almost got Livi to eat a peice of the melon...huge step. She licked it at least.

Thank you notes from
The Lapp family (of Exton)
The Heitland Family
Keep them coming...it is so great and the nurses will be so blessed

We now have
Janiece- 8
Holly- 12
Lois- 9
Cindy- 8
Carol- 9
Joanne- 10
Maritza- 8
Denise- 9

How to start (again)?

Notice the word again? I can't seem to do much right today. This is the second time I am typing this blog entry. I erased the first one. I put out the bills (which I was proud of myself for getting all together) with no stamps. I scratched Livi's face in the middle of the night putting her back in bed after a bottle. I took 2 left shoes to Hershey for Alivia (not helpful!) and I didn't put enough numbing cream on her port so it hurt to get it accessed (poor poor Livi!). Of course she forgave me and loves me still (thanks girlie) and the shoe fiasco gave everyone a good laugh.

There was a lot of news today and it's a bit hard to know how to feel. I am definetly more confused than before. The options are either super cool and exciting or super scary and sad. So I'm going to lay it all out and we'll see how it goes.

First...CBC
Her WBC's were 19.3 (down .2 from Monday...whooopie)
Her Red's were up a bit and her plateletes were up (probably from Monday's transfusion)

Second...her liver is smaller! I thought that her tummy looked a little smaller and the spleen didn't feel as large and the doc said he was even more impressed with the liver. Good news

Third...as I mentioned yesterday he said the bone marrow looked pretty much the same except the blast % is a bit lower. He still wants to go over it with the same pathologist that went over it last time. Usually they count 100 cells to do a rough estimate but with her they count about 1000! Huge effort and time commitment. He is going to do that before our next visit.

Fourth...the tests from Hopkins all came back negative. They ran two extremely specialized tests that are used to diagnos types of ALL that have elevated eosinophils. So that all but rules out ALL. Officially our doc is calling it a myeloproliferative disorder/ chronic eosinophilic leukemia. Not that he wasn't calling it that before but now he's even more sure.

So now what? Well he gave us the best, worst and a long shot.

Worst...If her WBC's go up again and she needs more transufions then they will want to treat for AML. (scary) We will then be living in the hospital for 7 months. He said that the treatment could be life threatening. Not so much the chemo but from infections. With this treatment they take all of her counts the whole way to zero and it takes a long time for the marrow to rebound in which time it is very easy to get infections. Not sure what we would do in this case. Do we start a treatment for something that she doesn't have or what? He said he might try Vincristine (which is used to treat ALL and won't help anything if its AML) or Glevace (which she doesn't have the genetic marker for)

Best...If her WBC's continue to come down or stay the same and her other numbers continue to get better they will consider it "a miracle" and we'll "thank God" (or doc's words!) Now keep in mind our doctor always says things like "keep our fingers crossed" and "we've been lucky so far" I was pretty shocked that he said the word God. We would still continue to "watch her like a hawk" but I can handle just watching her.

Long Shot...this is some sort of infection that went undetected or that they don't have a test for or didn't test for and it is just getting better. This is a very long shot because he thinks its gone on too long for that.

Regardless it was a confusing and yet not too bad day. Livi did really well (as always) even with the little bit of hurt from the port access she was a smiley girl the rest of the time (except when the doc came into the room cause she's scared of him). It was good having my parents and Cynthia along.

Pray for the best case scenario!!!!! (I know you're all thinking...obviously!) This next week will be a huge one. We will have our regularly scheduled Thursday appointment. The results from that visit will decide a lot. Pray pray pray...that is all we'll be doing!

Thanks to...
Mom, Dad and Cynthia for coming with and being distractions from the surroundings. Livi loves having all of you around.

Thank you notes to the nurses from...
Mom and Deb Barteck (Thanks so much for the money to help buy the nurses presents!! that was the sweetest!)

Here is the newest count
Janiece- 6
Holly- 10
Lois- 7
Chris- 8
Cindy- 6
Carol- 7
Joanne- 7
Maritza- 6
Denise- 7


I will be at church Sunday and my parents will be at theirs so if you want to just give us the thank you notes then that will be great.

Swimming

We have had two days in a row of swimming fun! Yesterday we went to April's parents house again (thanks!!) and had a great time. It was a bit cold so Livi spend most of her time dumping water all over the deck. She liked watching the kids (Grace and Samual and the King kids...Aidan, Autumn and Austin) run around. Like all little kids she thinks all older kids are the bees knees. We had a sweet suprise in the form of Maureen Bourke! We loved that we got to see you while you were here visiting. Love my Indiana buddies.

Then today we went to Ang's in-laws pool (thanks to the Stolzfus). Little warmer today and Livi enjoyed putting her face way to far into the water. She is learning not to do that. Also if I tell her to swim she kicks her legs like a frog and moves her arms. Seems like she'll swim away any second. So cute. There were also lots of animals the last few days. Yesterday we got to meet Helen's new kitten..Peanut butter and see the dogs (which Alivia loves) and today as we pulled up to the Stolzfus' Alivia started to scream and laugh and point...I was completely confussed. Till I realized there were COWS in the field right next to their house. Then there was a kitten at the pool (who apperently loves little kids and allowed Livi to poke it and pull its hair) and then 8 puppies. Oh she was on cloud nine. Yes she would love a dog...and no we aren't getting one right now. Little too much to handle. But one of these days she might just get one...which mainly means I'll get one. And I am proud to announce no sunburns (For all the concerned grandparents out there!)

My parents will get here tonight and tomorrow we have a 1:20 appointment. We got a call from the doc today saying that the bone marrow was pretty much the same..except the number of blasts seems to be down! We are definelty no closer to ALL then. Pretty good news (I think). Our doc wants to review it with the same pathologist that looked at the last one and make sure he agrees but it looked "better". We'll see what tomorrow brings....one day at a time.

Pray for...
...a safe trip for my parents
...a great CBC tomorrow (increase of red blood cells and platelets and a continued drop of the White's)
...Livi not to be aware that she's "sick". So far she isn't and we are just praying that continues


Thanks to...
... of our swimming buddies (April (Samual and Grace), Brandi (Aidan, Autumn, Austin), Maureen B., Angie S. and Tina (Owen)). And to the pool owners!!
...Rose and Paul Trepodi for the kind note.
Thank you notes from Vivian

Thank you notes

Just a quick update on the thank you notes.

Thanks to Cynthia, Dana Parmer, Bob Malito and Kathy Booker (I got your on Saturday and forgot to say thanks. Opps...sorry.)

Here is the updated count so far
Janiece- 5
Holly- 7
Lois- 5
Chris- 6
Cindy- 5
Carol- 6
Joanne- 5
Maritza- 5
Denise- 6

Keep writing those notes....it is so great to get them and see the piles grow. I can't wait to give them to the nurses. My new goal each week while we're at the hospital is to figure out what little gift would most bless these women. I am so grateful for them (and all of you for helping me bless them!)

What is going on?

We had a great weekend. Friday night our AC broke but James was able to fix it so that was wonderful. Saturday we just hung out together all day and we got to go to a wedding in Maryland on Sunday. (Congratulations Karl and Gail...we are so happy for you both...and Brooke). We got to see a lot of our friends that we haven't seen in months...and it was so refreshing. Thank you to all the people we saw for your prayers and concern. I think the thing that ment the most to both James and I was how we were treated. No one acted like we had the plague, or cried when they saw us or seemed to pity us in anyway. It was AMAZING and such a blessing. We felt as normal as we've felt this whole time. We were prepared for no-stop illness talk and it wasn't that way at all. We could talk about it if we wanted but didn't feel like that was the main focus of conversation. THANKS (x a million).

Over the weekend I had noticed an increase of petechiae (look Christine I spelled it right...I cheated and looked it up!) and then yesterday she leaned on the coffee table and got a bruise on her elbow so I knew that her plateletes were low. So I called this morning and they said to come in and get her CBC checked. We packed up and got on the road around 10:15. They checked her plateletes and they were 16 (140 is the low end of "normal") and set us up for a transfusion. The big suprise of the day though....her white blood cells (which I thought would be up over 100) were 19.5!!!! I can't believe it. That is the lowest they have been this whole time. CRAZY...of the meds and low numbers. Proves that the doctors can do all they know and yet God is in control (someone remind me I said that if the numbers go back up! I'll need to be reminded!). Not that we have an explanation of why that is happening but still....amazing blessing for today. Alivia did an amazing job today also. She didn't take a nap until the ride home (at 3) and yet was happy and cheerful the entire time. We were in the big infusion room with 5 other kids and their parents and she didn't cry once. She played happily and we didn't even have a TV till the last 1/2 hour! Such a big girl. More than one nurse asked if she was always this good and said they were amazed that she didn't even cry when they accessed her port or took it out. When the IV machine started to beep (meaning it was done) she leaned back in her stroller and pulled her shirt up to show her port as if to say "I'm done get this thing off of me!" Super cute. Love that girl more than I can say. She makes everyone smile. I love being her mom.

Thanks to...
MaryAnn Plesnicher for the card and gift.
Marmie for the signing videos. she is going to be fluent! Can't wait.
Lois Sensenig for the great dinner.
The Petro Family for the Bob Evans gift certificate

Thank you notes from ...... Moriah Freeman, Jen Clemmer, Cori Bitterman and Joni Cairns (thanks for the stickers too!)


Please pray...
...continued dropping of the WBC
...increase in Red blood cells and plateletes.


Here is the Thank you note count for today
Janiece- 5
Holly- 4
Lois- 4
Chris- 5
Cindy- 4
Carol- 5
Joanne- 4
Maritza- 4
Denise- 5

Bright and Early

I had a moment of pure terror this morning. Alivia wakes up around 6 and has a bottle then goes back to sleep for a while. This morning was no exception. I made up her bottle and went in to get her. I picked her up and looked in the crib and their was a bright red spot right where she had been laying. BLOOD (I thought). Instantly I started running through all the options of where she could be bleeding from...nose (no too low), back (too central), port (thought it had a scab). I reached down to touch it to see if it was wet and realized it was a peice of NutriGran bar that must have been down her pj's...she had one as a snack late last night. Good grief. So crazy. Waves of relief hitting me from all angles. Welcome to our day. Thankfully I didn't turn her over to check for the "blood" cause then she would have been fully awake and not able to get back to sleep.

Fun days

Yesterday and today were both fun days for us. My parents were here and after living through Tuesday we all needed some fun. Yesterday we went to the mall (cause it was way way to hot to be outside) and visited the toy stores, Disney store and all other stores that might be fun for a baby girl who had just been through...lets call it a bad day. And of course Livi having fun means we're having fun. We went out to lunch and came home for a great nap. Then we cleaned out the fridge for dinner and hit Cold Stone for some much needed ice cream (Livi was the only one who "needed" it..the rest of us just wanted it and probably didn't need it at all.)

Today we went swimming at April's parents house again (thanks so much!!!). All the kids (Eden, Aksel, Jude, Samual, Grace and Alivia) loved it. And we the adults (Leslie, Julie, April, Mom, Dad and I) did a great job keeping everyone mostly above water. Alivia couldn't love swimming more. She wants to be in the water at all times (even during lunch). We have a great blow-up raft that she sits down in. It's the best cause its pretty much impossible to tip and she can't get out of it. She even shared (with some a bit of convincing from me). After lunch (thanks for sharing the food girls!) she just wanted to be in the water without the raft thingy. So my parents and I took turns swimming her around. She loved it. She was laughing and trying to dunk her face in the water (not the best idea!). I definetly vote Pap and Gigi get a pool.

Thanks to Julie and my Dad for writing thank you notes.

Here is the count so far
Janiece-1
Holly- 2
Lois- 2
Cindy- 2
Chris- 1
Carol- 1
Joanne- 1
Maritza-1
Denise- 2
Total- 13

One Request

If you are reading this then I know that you can read and thus are also able to write....so I am collecting thank you notes once again...but this time for the outpatient hem/oc nurses. I am asking that every single person that reads this take 10 min to sit down and write ONE (you can write more but at least 1) thank you note. I am going to post their names and all you have to do is pick one of those names and write a quick note of thanks to bless that nurse. Even if we don't know each other, you've never met the nurses and you never post comments..thanks is a universal thing. These women deserve so much thanks. They daily deal with incredibly sick children and their stressed parents. I have never seen a single one of them without a smile and they are more patient than you can imagine. Any time we have to be in the office for an extended time they are always asking if we need anything and more than one of them has hugged me as I cried. These women are mothers, daughters, sisters, wives and friends just like me and yet they do the hardest job I can imagine doing. They are the ones who give the chemo, put in the needles, and dry the tears of some many. Ask my parents or Cynthia..they have all witnessed their care and concern. I am going to put together a gift bag for each of them and I want to include a ton of thank you notes. This is a good chance to teach kids to write thank you notes (homeschool project!!) or get back in the habit of using snail mail or a good lesson for a Sunday school class. I will be keeping a running tab each day of how many notes I get. I want to try to get at least 100. I know it seems like a lot but not if every single person writes one. Thanks ahead of time for doing this. People are always saying they want to help or what can they do... well folks THIS IS IT!!!

I am going to give them the gift bags the first week of September so I need all notes by August 31st so I have a chance to organize. This is really a chance to honor and bless some really great women who weekly bless us.

Here are their names....Holly, Lois, Cindy, Carol, Joanne, Chris, Maritza, and Denise. Also I am including Janiece in this list. She is not a nurse but works for Child Life and is in charge of getting whatever it is we need to make the visits easier. She also is in charge of all crafts, toys and activities.

Our address is
2768 Lititz Pike
Lancaster, PA 17601

Thank you notes thus far 9 (all from me)

Longer longest day ever.

So today started at 8 am (leaving the house) and we got home at 6:23. Long day to say the least and a bit more traumatic than yesterday. I hate when she's under anesthesia. Well we went to the clinic and got her port access and blood drawn for her CBC. It takes about a half hour for that to come back. We got her numbers...all the same except the platelettes were up to 54 since we had a transfusion yesterday (just a reminder 140-340 is normal so we are still no where near good). There was a big debate whether or not to give her red blood cells since her numbers were still really low. The final decision being YES. So after the bone marrow we were to report back for another transfusion.

We finally went over to the OR for the bone marrow. The only good part was that the let me stay till she fell asleep so I didn't have to hand her over while she was ballistic. But the used the drug that we thought she was allergic too and that was so hard for me. We told them all our concerns and they said that it didn't sound like a normal allergic response to that med (all i could think was there hasn't been much "normal" about her medically so why should this be normal?). Anyway they really thought it would be fine but as a mom signing that paper was so hard. What if I was allowing them to give her medicication that would harm her? Well we then waited outside the OR for what seemed like forever. Maybe because there were no chairs or anything to distract it was worse. I don't know. At one point the anesthesilogist came out and gave a big thumbs up and said she'll be ready in about 15-20 min, everything was fine...just wait for the doc to come out and get us. WELL...about 30 min later still no news. So I went in and asked what was going on. They said "oh its fine" and she would be out soon. Another 20-25 min and I'm starting to freak out. Finally our doc (who did the bone marrow) came out and said that everything was fine but was not waking up quickly. She was still completely out. He talked for a bit then left and one of the clinic nurses stayed with us for a while. They she checked AGAIN and Livi still wasn't awake. She told us to wait 10 min (stop watches please) and ask again. At about 9 min 40 seconds they finally came out. I went in and got to hold her. She was so incredibly groggy and limp. It was not fun to see her like that. She was upset and wasn't able to hold up her head or open her eyes...but confused and wanted to hold up her own head and was mad that I was holding it for her. She tried to drink a bottle and it was just too hard. (By this time it is 1 and she hasnt' eaten since 6am). After a little longer we walk her over to the clinic to start the blood transfusion. She fusses and cries the whole way because she doesn't want me to hold her head up but she's still to out of it to hold it up herself. I hate all of this by the way.

We finally got to the clinic and someone was in the quiet (single) room and the decided that since she wasn't fully out of the anesthesia that she would have to be in the infusion room (not what I was wanting and pretty discouraging). Thankfully there were only 2 other kids scheduled to be in there. Meanwhile we're waiting for the blood and Livi is crying cause she's....she doesn't even know what she is at this point (tired, hungry, hurt, scared...all of the above). We try everything to make her stop crying...until someone askes if she wants ice cream and instant stop. So Dad does a mad dash up to the cafe on the second floor but they are out so he goes to the the cafeteria all the way on the other side of the building. Ice cream was never recieved so warmly in all the ages as it was today! The nurses, my parents, Cynthia and I were all overjoyed to see my Dad come down the hall with that bowl of ice cream. She finished that and we moved over to the infusion room. We had a small corner of the room as our own. The grandma's went to have lunch (by now its about 2:45) and Dad and I played entertainers. The air conditioning wasn't working right and it was sweltering in the room and Livi was sweating like crazy. She kept going to itch her port and then just as the grandma's returned to the room she pulled her access out. Instant frenzy...Livi is screaming, there is blood all over her chest and everyones trying figure out what to do. The nurse comes in and we wipe her chest off and realize that its from the IV not her bleeding. Then we have to get re-accessed which is not fun cause she isn't numbed at all so it hurts. But she did really well considering. We finally get everything rehooked and she is settle enough for Dad and I to go have lunch. The rest of the infusion was as uneventful as a 3 and 1/2 hour confinement with a 1 yr old can be. We finally left around 5:40.

The doctor decided today to take her off of the Hydroxyurea. Not what I was expecting and not even something I thought was an option. But he wants to see if she has toxicity from the medication or from the disease (meaning all her other blood cells being so low). So we are not going to take any medication until August 10th and see what happens. I just feel so out of control and so helpless. I want to do something productive to help and now we are stopping the only medicine that was supposed to work. I know I need to trust God and that he's not suprised by this but I am human and I am suprised by this and not at all prepared for this turn of events.

Pray that her numbers don't shoot back up! I'm not even sure what to say to pray for. Pray for healing. Just pray

Thanks to...
...Jeanne Zelenak for the sweet card and gift
...Mr and Mrs Ogoreuc for the pig and book. She's been carrying the pig all over the place.