Sleep

Everyone keeps asking if Alivia is sleeping better. And up till last night I would have said maybe. She still gets up 3-5 times a night but it seems like when she sleeps it is a deeper sleep. Until last night. We got her to bed around 10 and she slept till 12. At 12 she woke up and was up every 20 min from then till 2:40. She would cry and I would get her and rock her, where she would fall right back to sleep then after about 10 min I would put her in bed she would sleep for about 7 min (just enough time for me to start to drift off) and then start crying. I would let her cry for a few minutes and the whole process began again. Around 2:40 she feel asleep and slept until 5. Then it all started again. She was up till almost 7. Finally she fell asleep and slept till 9. So total I probably got about 4 hours of sleep last night. Insane. Not sure what was going on. She does have a stuffy nose but I'm not sure if that was the problem. She is in a great mood today so obviously she got enough sleep. Go figure.

Results

Today went smoothly. A lot of waiting around but that has become normal for us. The lab was really slow and the doc was in a procedure. But otherwise all went well. Livi did great as always. She is the most amazing kid I know. I am reminded of this each time we go to clinic and she doesnt' even cry.
Her counts were good...ish. The WBC's were elevated to 54 but they assume that is from the surgery and they should calm back down. The RBC's were 10.2 (HCT for the nurses) and the platelets...wait for it...drum roll please were 277!!! That is normal and a number we have never ever seen before. Good riddance to the spleen. It was keeping her platelets down.

I feel like I got my questions answered. Our doc feels that transplant is the only way to cure Alivia. Extended time of steriod therapy will have many negative affects...lack of growth, weakened bones and possible osteoprosis. She still has no signs of ALL and so ALL treatment won't work. The doc reiterated that the transplant could take her life but she feels there is no other way to give her a normal life. So I guess we go ahead. We will be using a cord blood match because all adult unrelated donors haven't been perfect matches (all 9 out of 10...not good enough) and the cord they have is perfect. (side note if you are pregnant and wondering if you should save your cord blood or not you could always donate it to the national bone marrow registry. It's free and could save a life. go to marrow.org for more info) The transplant wont' be in two weeks like we originally thought. It will be in a month. Lots of hurry up and wait. Not that I mind the extra time at home just sort of want to get the transplant over with. That means Alivia will turn 2 in the hospital.

Thanks to Marmie for the frequent cards. Livi loves opening them. Thanks to Hannah K (and her parents) for the card and stickers.

Clinic

Today is our first clinic visit since the surgery. I am interested to see how much she weighs now. She is eating so well and being really active so I bet she didn't lose any weight. She is sleeping a bit better. Not getting up less but she seems to really be sleeping when she sleeps. It always seemed before that the slightest sound could wake her...like she was never really in that deep of a sleep. She is sleeping much more soundly now.

I have about 100 questions for the doc. Like how do you give a bath with the broviac? We did yesterday but it was really hard. You can't get any of it wet so we taped a bag to her chest. If we have to give a bath everyday that just won't work. Or how do I clean her lines? The hospital told me one way and the home care nurse another. They are very different so I need to figure out who is right and who is wrong. And finally are we sure? If this was our doc's child would she proceed? There is nothing else in the whole world that might cure her? What if its a simple thing and we're missing it? It will be good to get some answers.

Pray for wisdom for the docs and for us. It may come down to us making the decision whether or not to proceed. I'm not sure how to make that decision.

Hospital 4

Decorating cookies (once we got the okay to eat) in the play room...more went in her mouth than on the cookies


Playing with a dollhouse in the play room with Gigi and Grandpa

Sweaty head from all the playing.

Being silly with her hat on the drive home. She could see through it and thought it was hilarious to pull it over her eyes.

Hospital Pictures 3

Livi post surgery in our private surgery recovery room. Sleeping peacefully.


Middle of the night in our surgery recovery room watching TV. She has an IV in her foot and hand. She loves Grover (thanks Sarah) and he went everywhere with her...even the OR.

Finally on the 7th floor in our room. Not allowed to eat yet but still in a good mood. Still has the IV's but not for much longer

Her first liquid after surgery. She got to have ice chips which were the closest thing to food for a while. They almost fooled her.

Something hit her funny bone. I think its because she got to take the band-aid off her hand.

Hospital photos 2

These photo posts are in reverse order. The first ones were from early Monday, these are from later Monday

Being distracted from the hospital surroundings by the dancing Grannys (as they call themselves)

Grandpa calling Mars from the room

Livi after a dose of Versed...we call her Loopy Livi

Loopy Livi doing the chicken dance

Hospital Photos

I took pictures throughout our stay at the hospital. They are out of order so I will give little explanations.

Shortly before getting the medicine that makes her loopy so she can go back to surgery.

In the pre-surgery waiting room.

In the clinic at 8 am waiting to find out if we needed a transfusion...

Making crafts in the clinic waiting for counts

Day 4

We've been talking and decided I definetly need to take a shower today....at HOME!!!!

The surgens are writing the discharge papers as I write. WOO HOO

That is a day early. We have never, ever, ever, ever gotten out of the hospital early before. In fact we have never even gotten out on time. So this is a little miracle...okay a big miracle. There are a lot of things that I have to do at home now (medical wise) but it will be so nice to be in our own home.

Hospitals are sad places but pediatric floors are the most sad in my opinion. There are people here going through a lot worse than me. Never take a second of your life for granted. If you get even a minute outside of a hospital you are blessed because no one is guarenteed health, no one is guarenteed long life. The people here don't deserve this for some reason or another this is just the life God has planned for them. Next time your child is throwing a fit, having a bad attitude or just being cranky think of it as a blessing. Some of these kids can't do any of those things. They are hooked up to so many machines and recieving so many medications. I am so thankful for the way Alivia went through this surgery. We didn't deserve a better recovery than other kids. Of all her surgeries this one was the most intense but the easiest.


I have to go we're being paged

Day 3

As of 8 am we are back on food. Woo hoo. She was so happy and hyper all morning and wanting to eat everything in sight. So cute. She ate sweet potato puffs, bread and a banana. She's not even that big a fan of those foods. But she loved them and kept wanting more. Then we got to walk down to the play room. Livi took the trip in a wooden cart. Once there we decorated cookies (she did more eating then decorating). She is going to be one tired girlie this afternoon. They will be removing her drain later this afternoon. Please pray it goes quickly and easily. It can pinch (obviously) and might be pretty scary having a bunch of doctors around again. I'll update more later.

Day 2 part 2

I was interupted by the pediatric surgery resident coming into the room. They are not always as gentle or personable so I wanted to be there to make sure Alivia wasn't scared.

She is still doing great. So great in fact that they took out her 2 IV's (in her right foot and left hand) there were placed so that she would have access until there were sure the broviac was in the right place. All tests came back that it was in the right place so we can use it now. So both IV's came out. She was so excited. Now we're just waiting for Daddy (James) to get here so she can take off the band-aids (told her she had to wait for him so she would leave them on long enough to make sure they didn't bleed). Next big thing will be food. She hasn't eaten yet and won't be allowed till tomorrow. But she really wants to eat. We are keeping her filled with ice chips and blue slushies (her lips are so blue every nurse or doc asks whats wrong...slushies!)

She hasnt' slept since noon but still is the life of the party. So silly. I'm' overwhelmed by the mercy God is showing us. Thank you Lord. We are so blessed. We're in room 65 on 7 West for those coming to visit.

Please pray tonight for Sean. He is a little boy that was here the last time we were here. He had a transplant and the match wasn't that good so he has had a really rough time. Everything that could go wrong has. He finally got to go home 11 days ago (after over 100 days in) and today he got re-admitted for an infection. Please pray that he will turn the corner and start to get better. Thanks

Day 2

We now have our own real room. We spent the night in the surgery recovery (kind of like a hideout...not even our regular doc could find us). It worked our really better than I could have imagined (Thank you Lord). Our overnight nurse was so nice and we were the only ones in the whole area....wihc never happens (according to our nurse) most night there are at least 4 people in there. So it was quiet and nice. My bed was probably the most comfortable one I will sleep on till we go home. It was a regular patient bed and they put it right up against Livi's crib so we fell asleep holding hands.

We got in to our room around 2. Its at the end of the hall so it should be quiet too. I forget the room number but will post it soon. Alivia has been a blast all morning. Making us all laugh and being cute.

I'll be back...doc's in the room

Surgery update part 2

Alivia did so well. She is the greatest. I am so amazed by her strength and resiliance. (its been a long day forgive the spelling). We got to see her around 5 (I think) and she had just gotten some Morphine but she was so happy to see us. We calmed her down and the meds did too. Our nurse is great. Thanks Meg for being so kind. We were supposed to go to the Intermediate Unit but it was too busy so we are spending the night in the surgery recovery room..which let me tell you is a blessing! We are the only ones there so it is quiet, we have our own little room, I get to stay and we have our own personal nurse. So I can sleep knowing she is going to be watched like a hawk. What a great mercy for this super tired mom. Going to go back to Alivia just didn't want to leave everyone hanging over night. Thanks for all of you prayers and encouraging words. Thanks to Doug, Ethan, Abby Plank, Pete Privitera, and Uncle John for visiting today. Its always so nice to see friendly faces and a good distraction from the bigger things going on.

Surgery update

Alivia is still in surgery as of now (3:17) and we haven't heard anything. She didn't go in until around 2 because there was an emergency surgery that took our OR. She did an amazing job without food. She was happy, silly, funny and smiley almost the entire morning. She let the doctors check her out (only cried when they looked in her mouth), got accessed, took some meds and went back to surgery.

Best news of the day so far was there her blood counts were good enough not to need a transfusion. They thought that 50 would be a good enough number...she would need a transfusion but that would be a good starting point...but she was 100. So she didn't even need any tranfusion. Her WBC's were 16.7 and RBC's (hemocrit) 10.2. All in all pretty good numbers.

There is talk that she might be intubated when she comes out of surgery. Pray that everything goes so well that she won't have to be. Also they talked of giving her an epidural if the pain was too much. We really dont' want that so pray they can control her pain with morphine. the spleen is very vascular so pray the bleeding is minimual and that they fluid levels aren't too much or too little. Pray that her body recovers quickly and she will be able to eat again.

I miss my girl and can't wait to hold her again. I don't do well with being away from her even when we leave her with someone we know and love (like my parents...or even James) she is one of my best friends, my favorite people and I hate being away from her on a normal day. thanks for all of your prayers and well wishes so far. It is amazing to know that you are all out there praying for our sweet girl.

Thanks Will

When you pray tomorrow keep this little face in mind. She is the sweetest girl I have ever known and I love her to bits.



Thanks Uncle Will for taking pictures for us this morning. I love them.

Six years ago yesterday James Haughery got on one knee and asked Emily Allen to be his wife. I said yes. And we started to plan our lives. Twenty-two months ago yesterday Alivia Haughery entered the world. She was part of what we started planning and dreaming about 6 years earlier.

Tomorrow we will walk into the hospital and hand her over to have a part of her removed. That wasn't something we could have ever planned or imagined. To say I am nervous is the understatement of the year. I am terrified. I want to live in a state of denial and not deal with it. I want to run away to a deserted island and take my baby with me. But the only way for me to be a good mom right now it to pack my bags, bundle up my girl and head to the hospital. I knew being a mom would have difficult times, hard decisions but I always imagined that would mean dealing with attitudes or obedience....not this.

Surgery is scheduled for 1. It is supposed to last 3 or 4 hours. Pray for us.

Great Friday

This makes me smile. I had a great Friday. I got to see all my best girls (except Rachel who I got to see last weekend). I spent the day with April and her kids. Here are my 3 favorite pictures.



You can't see it but they are holding hands

Livi doesn't let just anyone hug her...but she sure does love Samual.

And I had a great evening out with a bunch of my friends. Thanks ladies for making me laugh and not talking about medical stuff. You guys are the greatest.

Burger king

Unfortunetly the title of Burger King is already filled so Livi is going to be the Bun Princess

Clinic

Today's visit went really well. Alivia's counts were good again.
RBC's -10.1
Platelets-84
WBC-14.3

There were no tears from Livi but a few from me when I realized that was the last time her mediport will be accessed. I know I didn't want it but I really really don't want the broviac! The mediport has given us some trouble but overall has been a good thing because it kept us from the labs. After next monday they will remove the mediport and place the broviac. Just one step closer to transplant. Yuck. I pray that we will be released from the hospital in enough time to visit the clinic one more time before transplant. I can't imagine not seeing the nurses from that long. I will miss them terribly. They have played such a huge part in this whole illness. They have comforted, cared, laughed and cried with us. I love those ladies.

Another weekend

We had a great weekend. My brothers and parents were here. Saturday was Andrews birthday and I think we did a pretty good job celebrating. Here are a few quick shots.

Goofing off with Uncle Andrew

Being serenaded by my uncles

With all her little friends....Samual and Grace (standing), Eden, Aksel, Own and Livi
Tomorrow we head to Hershey, one week from today is surgery. We are going to have a great week and try not to think about it. There may not be many updates this week as we'll be very busy getting ready to the week to come and for the transplant which will be about 3 weeks after surgery. Please pray for us. We need it so much.

Prayer requests....sleep for all of us....a perfect match for Alivia...wisdom for the doc's, nurses and anesthesiologists...some great times this week...no illnesses for my parents, James or I...a perfect surgery...some peace....some comfort...healing.

What?

We've recovered from our visit with the stomach flu...I even ate today. Oh the little things. As if this week were not crazy enough here a few other things we are dealing with. One of the guys who works from James jumped off a porch and landed on a nail which went into his foot and chipped a bone (what are the chances?), another re-injured a hurt wrist and will be out for 2 weeks. James' guys spent the last four days rigging scaffolding and so they could put stone on the front of a house only too have it be too cold for the mortar to set up. And last but not least a squirrel has taken up residence in our master bedroom ceiling. How he got in there and why he loves midninght snacks so much I'll never know. But it anyone wants to go squirrel hunting give us a call. Normally I would be much more compassionate but all I can think is "what germs is this squirrel carrying?" I would like him to move out now. I've become a bit giddy from all of it. I guess if I don't laugh I will cry and if I start crying who knows when it will ever stop.

Grandpa's Girl

Some kids are daddy's girl, some mommy's...but for the last day and a half Livi got to be Grandpa's girl. And she loved every second of it. Yesterday, shortly after Alivia cut her lip, I called my dad and through tears told him what had happened. He (being the best dad every) jumped in his car and headed to Lancaster. I didn't have to ask, he just knew that I needed my daddy. Livi and I both took a nap when we got home and it saw great to wake up from the nap and see my two favorite men in the whole world (James and my dad). It was such a blessing that he came because James and I both came down with the stomach flu overnight. Because he was here James got to go to bed at 8:30 and I layed on the couch and watched Livi and Grandpa play. He is one of Alivia's most favorite people. You can tell by the way her face lights up when she sees him, or the way she let him hold her in the middle of the night (when I was sick), or the way she couldnt' get enough of him this morning when he let me sleep in. I came downstair and she was laughing and having a great time with Grandpa. My dad is amazing. He is one of the most kind, compassionate and wise people I know. If you see him thank him for me (he's going to deny that he was doing anything special...but he was!) Daddy---I love you so much. I couldn't have gotten through last night without your help. Thanks for coming here and taking care of us.





Please pray that my dad doesn't get sick. Also please pray that the swelling in Alivia's lip goes down. It doesn't seem to bother her much but we need to see how it looks when the swelling is down. It seems like one of the stitches might have come out and we need to decide whether or not to take her back to the hospital tomorrow to get it checked.

Not for the fainthearted

Just a warning if you can't deal with blood dont' look at the picture today. Our visit to the hospital was eventful as always. Livi's counts were great (WBC-23, RBC-10.1 (hemacrit for the nurses) and Platelets-71) Thank God the platelets were high. We were in the exam room waiting to see the doc and Livi got her foot caught on the chair and fell. She was screaming like crazy. I grabbed and and rushed into the hall because her port was accessed and I thought she hit it when I saw all the blood on her face. She either hit the leg of the chair or her tooth went through her lip...or both. Regardless she had a really bad gash on her lip. It was split right through. We held pressure on then had the plastic surgeons come and look at it. There was talk of the OR and anesthesia but it worked out that we got to go to the plastic surgery clinic and one of the nurses from clinic came with us and did conscious sedation. 1 internal and 4 or 5 external stitches later and she's good as new. Poor sweet girl. She did an amazing job and didn't cry at all during the stitching (she was awake but loopy). After she got two more immunizations and those she did cry for. I'm off to take a nap. It's been way too long of a day. Now for the pictures...





Split lip...its as bad as it looks.
All stitched up and a little loopy from the neds. Still the cutest girl I know.

Weekend..in Photos

We had a great weekend. Here are some shots of Alivia...
Dressed like a "movie star" at Hands-on-House (the local kid's museum)


All snuggled up in her new elephant towel (thanks Samual and Grace)

Trying out the big girl beds at Ikea. She wanted to try all of them...might be time to get rid of the crib.

Visiting Scott and Ang at Market and drinking Mommy's ice tea
Tomorrow we have a doc visit. Pray the counts are still good and we don't need a transfusion.

Surgical consult

Today's surgical consult went as well as any discussion about cutting open my baby can go. It went fine. We learned a few new things...like it doesn't really matter how small the spleen gets they have to do an open splenectomy (not laproscopic). So all that concern and hoping for a shrinking spleen...kind of pointless...unless it had become normal at some point. We have a date too for the surgery...January 22nd. We will have the open splenectomy and have a broviac line put in and her current media port removed. The broviac goes into the vein like the media port but then 2 lines hang out of the body at all times. From the OR she will be in the ICU for at least a day or two to closely monitor her breathing. Then she will be moved to the floor for a few more days. In all we should be there at least 5 days. Its pretty intense and a little to real. I am feeling very overwhelmed right now. We have been talking about it so long it almost seemed like it would never really happen. Please pray for peace, for a perfect surgery, for healing.

Counts today went really well. Her WBC"s were down to 32! Last week there were over 120. Huge jump in the right direction. Her RBC's held their own at 9.7 and her platelets came up a bit. So at least that felt positive. I know its important not to rely on the numbers but it sure is a blessing to get good ones.


Monday will be 9 months since this all started. Nine months of ups and downs and lots of uncertianty. I am scared beyond belief of transplant but thankful that at some point we could be done with leukemia.

More photos.

The following photos are in no order but are from our holiday this year

Our Little family at Christmas...Livi wore her headband for about 2 mins.




Livi and Nyah coloring on New Years Day



New Years Party


The Haughery family....all spiffed up

Playing Apples to Apples on New Years Eve

Aquarium, New Years and News

Friday we went to the Aquarium. It was so much fun. We went with John, Chris, Will and Jeremy.

Uncle John, Uncle Chris, Livi (in pack), James, Jeremy and Uncle Will
Our Family

Of course Alivia's favorite part was feeding the pigeons in front of the aquarium. Isnt' that how it is with kids...give them a toy and they like the box and wrapping paper better. She did like the sharks though....okay so the large cut outs of the sharks that show what kind of shark were a little more exciting then the actual sharks but she did get excited when the one shark was asleep and kept shushing everyone. Sweet.

New Years Eve we had some friends over. It was such a good time. I'll post a picture or two later. Our friends, Neil, Jess, Nyah Smart and Jake Campbell came for the night. We haven't seen then in so long and it was great to spend time together. We had 16 people here. Lots of laughter and fun. A very good way to start what might be the hardest year of our lives.

Yesterday...New Years Day we hung out with Neil, Jess and Nyah all day. We cleaned up (no dishwasher makes that a much longer process). Jess and I started doing the dishes at one point and were putting things down the disposal when the sink started to act weird. One side would drain and the other would fill and vice versa. So we tried the disposal one more time and water came shooting out of the pipe by the washing machine (which is in the closet in our "dining room"). It shot up and hit the top of the door and the window outside the closet. It was the grossest thing. We were laughing and freaking out. (all of this happened less than 20 min after Alivia threw up) What a mess. I sort of hit the end of the rope when that happened. So we called James' brother and asked for help. They showed up with 3 friends (thanks guys) and helped clean up, take down all the Christmas decorations and get our home back to some form of clean. It was the most amazing thing.

On Friday while we were in Baltimore we got a phone call from our doc. After much discussion they decided that Alivia has become resistant to the Gleevec. So they discontinued its use. They restarted the use of steriods and Hydroxyurea (I couldn't spell Gleevec...so thats probably wrong but who cares). With those she also takes Zantag to keep from getting heart burn. The transition hasn't been as smooth as I would like. I just have to get all organized and get the timing figured out again. This time though the Hydroxyurea is to be taked with food. Good thing cause steriods can make her incredibly hungry (they haven't yet but we're ready for it). Also we found out that we have her surgical consult for the spleenectomy on Wednesday (yea thats tomorrow) at 8:30 AM. We knew this was all in the works but it is still a little shocking to actually have appointments set up. We have been told that one the spleen is removed it will be 2 weeks till transplant. So far there is not an adult unrelated donor found so we are praying that happens soon. We would rather use that then a cord. But God knows what is best and will give that too us. The last time we had a surgical consult they planned the surgery for less than a week after so we are trying to be ready for that possiblity. I feel a little like we hit warp speed on Friday. We've been dragging along waiting for something to happen and now it is and I'm terrified and totally unprepared. I feel like I have a million things I need/want to do before the transplant. Guess we'll just have to make every second count between now and transplant (and ever second after)

Thanks to Dwayne, Tina, Andy, Amy, Jamie ,Lyndon, Neil, Jess, Nyah, Jake, John, Chris, Will, Jeremy, Duke, Steve and Ryan for spending a fun New Years with us (and for bringing such great food)
Thanks to Neil, Jess, John, Chris, Will, Duke, Steve and Ryan for being our cleaning elves. It made my life about 10 times easier. So much less to worry about. I wasnt' sure if we were going to get the tree down before transplant. We couldn't have done it without you.
Thanks to those who told me there were reading the other blog. I will try to post more medical info soon.

please pray that tomorrow's consult goes well and that counts are better than last week. Also pray that the meds shrink the spleen again (it got bigger when the meds stopped working) or they wont' be able to do laproscopic surgery.