Wednesday, July 31, 2013

Day -4 & -3

DAY -4
MORNING UPDATE:
Last night Emma ran a fever all night and still is. She slept pretty good but whimpered a lot in her sleep. She had to get up every two hours to pee. They had me wake her up to take her if she didn't wake up on her own. I know that migh
t seem kind of mean to not let her sleep, but the chemo can't sit around in her bladder or else it can make her bladder have bleeding and blood clot problems. Plus, they need to make sure her kidney is functioning okay and producing proper amounts of urine. Which, thus far, it is working fantastically. Luckily she woke up, peed, and went right back to sleep quite easily.

Her platelets came back at 8 (8,000), so they transfused her some platelets in the wee hours of the night. Her wbc is down to .6, but her ANC is up to 500 something. I think her body must be trying to fight off the ATG (animal antibodies that she's been given to destroy her WBC so that her WBC won't fight the new marrow when she's given it).

This morning I woke up to Emma looking at me really strangely. She was acting odd. I was confused. I saw her stand up, so I figured she was getting ready to use the restroom. I walked over to that side of the bed and saw she was standing on the floor barefoot, which she never does. Feet go straight into her shoes. I mentioned to her that she forgot to put her shoes on, and she jumped at me like I had yelled at her (which I hadn't). She was acting really odd. So I walked her into the bathroom, and she went fine, and then she forgot what the toilet paper was for and just put it in the garbage. I kind of stood there looking super confused. Then she laid back down. She kept jumping at everything I was saying like I was yelling at her, which I wasn't at all. When she would look at me, she looked different in her eyes. Like she wasn't totally there all the way.  (Pretty sure she was sleeping walking due to the Benadryl).

Her chemo and stuff shouldn't affect her mentally like radiation (and some other chemos?) can do. And she hasn't had any radiation. So, I wasn't sure what was going on. I told the nurse, and she wondered if it was the Benadryl. Emma had received it a few more times. I think that's what it is. Emma reacts really weird to Benadryl. Same thing with morphine. But it's why we asked to use a different medication instead of Benedryl because it messes with Emma's mind. But with her breathing reaction yesterday, they switched back to Benadryl since it works better...and we want Emma breathing...so I am totally fine with dealing with weird thinking from her in the meantime.

I've since asked Emma, and she doesn't remember that potty trip at all.

Oh, and I also learned something I thought was quite interesting. It also surprised me quite a bit because I assumed it would be the opposite. But, to prep for transplant (with the chemo and ATG), it's a harsh prep compared to "normal" transplants. There isn't actually a normal, but compared to average, what they have FA kids go through to prepare for transplant, it's pretty rough. The nurse said she doesn't know why it's that way, but that it is. Same with MDS/AML kids and stuff (which makes sense considering FA kids are really prone to those types of illnesses too).

The doctors did rounds and checked her out. I have to say that they are really nice people. Granted, I do feel a little bit odd standing out among everyone and being the only one with a computer on a computer cart. I've asked them if they can get me one so I can roll mine out with my laptop on it and pretend to be like them. It's really tempting to the do "Doctor" nod at one "Doctor" nod at another, etc, etc, until I say it to all of them...even the ones that aren't doctors.

So, the plan for today is to give her Fludarbine, which she was also given yesterday. It's a chemo that runs for about 30 minutes. They are doing that right now. Actually, no, I think they have finished that. I'm a little too lazy to get up and look.

Then they'll give her...uh...I forgot. It's Mesna to protect her bladder from the next chemo. The next chemo is Cytoxin. After that they give Mesna again...and then again...and again...and again. The medication is supposed to work pretty good at protecting her kidney/bladder.

Then after that, it's time for the Liquid Evil (ATG) again. This time they are prepping her with Benadryl, Tylenol, and hydrocortisone (steroid). They are giving her a double dose of the steroid in hopes of helping her not have a repeat of the breathing problem. Then four hours into it, they'll give her all those meds again to ensure she'll be fine breathing. They are also running the ATG for 12 hours instead of 8 hours.

Dr Davies (our actual doctor) saw Emma and said she looks great! She's doing everything she's supposed to do. All of these (awful) things are the steps we need to take to ensure the transplant works. We have to get rid of her immune system, chasing down all the white blood cells (using the ATG) so there isn't much of a fight when the new marrow/cells are given.

I requested to be allowed to destroy the chemo/ATG bags, just for emotional reasons, and they all thought I was kidding...they mentioned something about it being toxic and all...whatever! (just kidding)

Anyway, time to snuggle with Emma. This photo is of them getting chemo going. They wear a special blue gown over their normal one and then eye protection. It's such a "great" feeling to see all that toxic stuff going in her.




---

ANOTHER UPDATE:
Emma has had fludarbine and cytoxin, both are chemos, plus stuff to protect her liver and kidney/bladder, as well as meds to help with nausea.

She is currently on the Liquid Evil (ATG). They prepped her with Benadryl, Tylenol, and steroids in hopes of stopping any reaction. Yesterday, when she was having trouble breathing, they gave her steroids too to try to stop the reaction. So, this time they are giving it in advance and double the dose.

She's responding much better to it and hasn't had any issues. She has a low fever but nothing concerning. Her heart rate is much lower too.

She has a rash on her arms and legs...we think. They got super itchy for her and it seems they are turning red and splotchy, but it was a little hard to tell since she scratched all over it. A rash would be totally normal...though, it's still not fun to see.

She's been asleep 95% of the time, it seems. She whimpers in her sleep. When she does wake up, she's on the verge of tears and is always distraught. This could easily be because of the Benadryl. She often reacts to it in this way, which is why we tried that other medication instead (sounds like "ataracts", like "cataracts"). But it didn't work as well and is part of why she ended up having a reaction like she did. So, we're back to Benadryl.

She looks a little swollen and her skin isn't the right color. The swelling could be from the steroids and the fluids. The coloring could be a type of rash thing from the ATG.

She's thrown up twice today...I think. And she has so much fluid going through her that she wakes often to go. I'm afraid to leave her because last time I walked out for 20 seconds, I came back to her throwing up. (This causes issues, as I have to go to a different room to eat and use the restroom.)

All of these things are normal. I just keep telling myself that! I'm apparently really tired, so I'm going to take a nap. Emma has looked about like this for most of the day.


Emma has slept most of the day until around 6pm. It's definitely been a better day than yesterday. She woke up this evening and was really wanting to talk to family. She FaceTimed her dad and brother in TX. Then later, Kyrie (cousin) and Ella (baby sister).

Emma has been feeling pretty sick when she's awake. Prior to this video (of when she FaceTimed Ella and Kyrie), I'd been sitting by her for quite a while, trying to calm the nausea or at least hug her through it. 

This isn't the most exciting video. Just a little glimpse into what her waking moments are like today. She still tries to play through it.




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DAY -3 (TUES)


Thanks for all the messages and questions about how Emma is doing. It's been a busy day with very little down time, but I've been trying to update and keep not getting it done.

Emma's felt crummy most of the day, with the exception of about two hours surrounding music therapy visiting her. She was happy and almost her little self again. But that wore off as the nausea kicked in again and she's pretty miserable right now. She's drinking some chicken broth, or "chicken bra", as she says (not on purpose).

This morning she ran a higher fever, but, last I heard, the fever is gone. She's doing the same as the two days before - fludarabine, then cytoxin, then ATG. Today they added cyclosporine, which is supposed to help with preventing GVHD (graft vs host disease). They also give meds to help with protecting her liver and kidney, as well as helping her deal with the nausea. She's still peeing really well - which is something they keep an eye on. The way they talk, I almost feel like I should get her an award for her high urine output.

She's been pretty angry today. We've decided we are going to go to Disney World when she's all better and allowed to return to the world of normal living (in at least a year). So, I use that as encouragement to help her keep her focused. It's where she went for her Make-A-Wish, and it would be special to go back there again. But, anytime she tells me she's angry, we talk about it, accept that's how she feels and that it's OKAY to be angry. (There's no way I'll be adding to her stress by trying to get her to not be angry. I'd be angry too!)

We're very homesick. It's hard to be away from our most favorite people in the world.

This hospital is fantastic. The people are fantastic. Pauly the clown facetimed with Emma yesterday because she really wanted to see him. Fingers crossed he'll be able to actually visit her here one day.

Today music therapy came in. If I have some time, I'll post some videos, but here's a photo of Emma listening to the awesome Beth singing and playing music for her. I almost cried through all of it.

It's hard to see her feeling so sick. We try to remember what the purpose of all of this is - it's so we CAN be together as a family again and so that we CAN have Emma here for a lot longer than we would otherwise with a HIGHER quality of life than she had before. It's just really hard to see her suffer so much through it. As I watch her little body, watching her tears, watching her sick, I think that out of all the moms in the world, I get to be hers. And for that, I'm forever grateful.




Monday, July 29, 2013

Day -5

Last night from Ani (my sister):

Hello friends! Auntie Boromir(Ani) here!

For the past few nights I have been staying here at the hospital with miss Emma Rose, so her Momma can have some time with the Ella baby. Tonight she started off rather silly and goofy, but missing home got to her. One of my favorite nurses was in here, waiting the last couple minutes until Emma's dose of chemo was done, so she could unhook her, and Emma was showing her some of her toys and drawings. I stood by watching her jabber away so cute and funny, when she grabbed her pink stuffed rabbit to show the nurse. She gave it a squeeze:
"Hi Emma, I love you and miss you. I can't wait until we can all be home together again." her daddy's voice said.
I saw her goofy playfulness disappear, as her shoulders dropped for a moment before she hugged the rabbit to her as close as possible, squeezing it over and over to hear her daddy's voice. There is no force on this planet that could have gotten that rabbit out of her arms. The nurse finished what she was doing and quietly left. I sat and held Emma's hand, but then those quiet little tears turned into sobs. It's hard to comfort her when we have to be cautious of getting too close. I held her and snuggled her, just making sure I didn't breath on her or anything. She felt so tiny in my arms. Every night when we say nighttime prayers she asks me to say it, but tonight she wanted to say it. She asked God to let her be with her family again so she can finally feel happy. It was almost to sad to stand. She finally relaxed and went to sleep. When she got up to use the bathroom a while later she told me she was feeling a little better. 


I know that we have all been discussing feeling extra emotional recently, so in a way it's a relief when she finally expresses herself and lets the sad feelings out. I'm glad she has a way to hear her daddy's voice whenever she needs. I don't think any of us realized how not ready we were for this. 


I'm really grateful that I get to spend tonight with her though. I know that tomo
rrow she will likely start getting sick and that's when her momma will be here through the nights. As emotional as it may be it's nice to be able to have her here with me, I feel like it's the only way to express how much I love her, letting her know I'm right here. I'm also grateful for tonight, because this may be her last comfortable night for a while. 

Something tells me that no matter how hard I try, I won't be sleeping tonight, I'll be too busy watching my little angel, it's so hard to not want to cling to each moment. 
Goodnight. 



---

This morning Emma was pretty chipper.  She was happy and playing.




Emma's machine was beeping, so she pushed the call button and waited...and waited for their response. 

This is mostly a pointless video. Was just the last one I took before she rather quickly went downhill.  Here's the link if you need it:  http://www.youtube.com/watch?v=GM2Y2q6tWZI


She was in a really good mood and smiling most of the time.

They gave her Fludarbine, which ran over 20 minutes or so.  Then they prepped her with Mesna, which protects the bladder and kidneys.  Then they gave her Cytoxin, which is especially difficult on the bladder and kidneys.  Then they gave her Mesna again to help protect bladder and kidneys (they gave this several times since).  The Cytoxin ran for about an hour. 

She felt good with all of this.

Then...

They gave her ATG.

ATG is created in horses or rabbits.  What they do is take human white blood cells and put it in the animal.  Then the animal's body reacts to the foreign invader and creates antibodies to destroy it.  That's what ATG is.  It's the antibodies from the animals to kill of human white blood cells.  They gave that to Emma to kill of her white blood cells. 

Once they gave that to her, she went from feeling happy and chipper to not so much.  Instead of rewriting it all, I'll just copy and paste from our FB page:

They started the ATG and soon Emma went from being chipper to being tired and having a bad headache. She snuggled up to rest and was not herself at all. 

PHOTO:  Emma had been happy until they started adding more devices to monitor her.  She had some heart monitor leads placed on her chest, as well as a pulse ox added to her toe.  She got scared and a little overwhelmed by it.


PHOTO:  This is the ATG.  It hate it.  I know it is doing an important thing, but right now I just can't like it.  It has a brown bag over it so that the sun/light doesn't shine on it.  And because it's a coward.


Her head was hurting and she couldn't sit up anymore and didn't feel well at all:

It was a little shocking how fast she went from feeling good to feeling really bad.

I noticed she kept coughing. I asked her if she was okay. She was. Then a few minutes later she seemed distraught. She told me she felt like she needed more air.

I called the nurse and asked if our nurse could come in because Emma wasn't feeling well.

A couple minutes later Emma was getting distraught again, coughing, saying she couldn't clear her throat, and she was wilting. She needed more air.

I called again and said she was having trouble breathing.  (This is something they said could happen and to call asap because they'd need to get it taken care of.)

Within 30 seconds, three nurses were gowned and in and they turned off her ATG (aka Liquid Evil). They started oxygen and listened to her breathing. Her oxygen was fine, just dipped to 93 but usually was 100.  So, I didn't think she was low on oxygen and was why I was a bit confused about her breathing issues.

Her heart rate had been in the 70's and was now in the 140-150's.

Meanwhile, I had stepped out of the way to give them space to work and watch. I don't like to cry in front of medical personnel and it took every little bit to hold it in.

Soon there were four nurses, each doing something. Then the doctor soon after. 



PHOTO ABOVE:  I was hiding off on the side, so it's not the greatest photo.  There were three other nurses that you couldn't see.  I wasn't sure if they cared if I took pics, so I snuck them with my camera phone since I'm a ninja.

She was given Benadryl and they took cultures, started antibiotics, did a chest X-ray (looks good), and have oxygen for her for comfort. They couldn't figure out why her lips were looking blue and she was shaking all over. BUT, this is common with ATG.  It's also why I hate it.  They did all the testing as a precaution to make sure all is well.

After about 45 minutes, we were back down to just 2 nurses and the doctor explained it was not uncommon with ATG. Then a while after that, back down to one nurse.  Emma was now breathing okay.  Still a really high heart rate, but she wasn't feeling out of breath:
Photo:  They had a nasal cannula on her AND oxygen blowing on her because she wouldn't let them take the nasal cannula off.  Only the air blowing on her was on, not the cannula.

Then a little while later, Emma woke up panicked and said she was going to puke. She threw up, and it looked like she had blood in it.

It's about that time that I wanted to crumble and tell them never mind. We were just kidding. We'll go back home.

We're still at the beginning of all of this and I don't want to see how much worse it'll get.

Her heart rate is still in the 130's. Her fever got up to 104.5. She's completely uncovered now (unlike in the photo).

During all this, I texted Tyler. He called Ani and she's here with us. Now we don't have to worry about Emma being alone while we go eat or pee (we can't do that in her room).

Pleeeease pray that she will do well. I'd be lying if I said I'm not scared. I know God is watching over her. I *know* he can heal her. I just hope he does.

I know it'll get bad before it gets better. Every day is one step closer to the better.

And...Emma has officially decided she wants me to shave my head when her hair falls out. So I'll be doing that. I just need to buy some hats now.

They'll restart the ATG in about 20 minutes.

---
EVENING UPDATE:
Emma was awake for a little while once her fever broke a few hours after her breathing issue.  But that didn't last long.  She tried latch hooking but only lasted for about 10 minutes before being too weak to continue.  She's been sleeping most of the time and woke up once to puke (more blood) and has been sleeping the rest of the time.  I've been laying by her and holding my little baby girl in my arms...willing my healthy energy onto her and praying for angels to help her through this.  She's running another fever, around 104.  We have her fully uncovered and ice packs on her (unlike she was in the photo).


Saturday, July 27, 2013

Day -7 and -6

Day -7
Today was pretty uneventful. I stayed with the baby until about 9:45 am, knowing they wouldn't be starting chemo for Emma until tonight. I'm trying to figure out how to balance time between the two. Once Emma is feeling sick, I'm planning on staying with her, with little visits to see Ella (baby), until Emma feels better. So for now, I'm trying to see Ella a little more than I will be.

When I went over to the hospital, Emma was happily playing on her iPad. She's totally comfortable at the hospital and sleeping well. My sister has been staying the nights with her.

The hormonal imbalance thing caused by the removal of one of her ovaries seems to have been balanced out and the issue has gone away.

We've discovered Emma needs glasses and she can't see the tv very well. Netflix doesn't work on her iPad, due to the Internet or firewall, but it'll work on a laptop. So, child life brought a laptop for her to use to watch movies and be able to see it well. She loved it.

Around 6pm, they received the results of all the blood testing they did yesterday when they gave Emma a small dose of the chemo. That tells them what dose of chemo to give Emma from now on. They gave her a dose tonight at 8 pm. I'll have to pull out the schedule, when I'm not so lazy, and explain the schedule for chemo and what other ones she'll be getting.

The purpose of the chemo is to destroy her bone marrow. Since she has Fanconi Anemia, it means that Emma's body breaks down super easy. Kind of like someone who has had lots of radiation & has frail chromosomes that break really easy. She can't handle normal doses of chemo without it likely being fatal. Same with radiation.

So, all that makes transplanting a person with FA quite challenging.

They keep refining it and keep changing it. Now they've figured out how to avoid radiation and try to use the lowest doses of chemo as they can and it affects her more than it would a non-FA person.

She'll have chemo for...counting yesterday...for 7 days. That should totally wipe out her bone marrow. Then she'll have a day of rest. Maybe two. They said they will collect from the donor on Friday but we won't get them until Saturday.

Back at home, Tyler and Rhys are back home from visiting us, and he got our two kids from my sister's house about five hours away (they met in the middle). They had stayed there while he came to visit here. So, it's nice to have them back at home together. Rhys (3) and Violet (5) kept hugging once they saw each other again.

In the photo, while we were FaceTiming, TS (6) got a blanket and wrapped Rhys up in it and snuggled her in his arms to keep her warm. It was so sweet! I love it when siblings take care of each other. We miss them SO much. It was good to talk with them.

Sorry this update is so late tonight. I'm about to fall asleep so I hope it made sense. We had a busy night. I'm here with the baby again. I'll be heading back tomorrow. Auntie Ani is hanging out with the Emma tonight.




---
Day -6 Video:
Emma really wanted me to post this video and tell people about her hands. She was born with a rare genetic disease called Fanconi Anemia, and besides the health issues that it causes (bone marrow failure and cancers), there are often some physical abnormalities.

For Emma, and many others with FA, that means she was born with no thumbs (...and had a major heart defect that required open heart surgery, has only one kidney, has a repaired cleft of her soft palate and has moderate to severe hearing loss. At age 10 she is the size of a 7 yr old.)

She wanted me to tell you about her hands. She says she doesn't need thumbs. She wants them, but she likes her hands without them too, and she can do everything still. She says if something is hard, she just has to keep trying and she'll figure it out.

She also wanted me to say that if there is anyone out there that doesn't like something about themselves, she wishes they wouldn't feel bad about it. She also said that she knows that when we all die, Jesus will heal and fix everything that needs it.

Someone gave her a latch hook kit (thank you!!), which she LOVES! Here she is playing with it...no thumbs and all. ♥ She used to be so shy and is getting so NOT shy while being here. She cracked me up. She thinks latch hooking is pretty awesome.






---


DAY -6 (continued)
It seems deceptively innocent as it sits there quietly on the stand, almost hidden in the background, slowly going inside of Emma's body. 

Watching Emma smile and laugh and play, it almost seems like she's unaware of what is going on. She seems unaware that poison is entering in and starting the process of destroying her bone marrow. But she's not unaware. She knows what is going on. We've explained it and discussed it, and she chose this, along with us.


As her mother, there's such conflicting emotions. I know logically that this will save her, but knowing what this is doing to her and how sick she'll get, I feel like ripping it down and karate chopping it on the head. Or maybe going all Hulk on it and everyone else that tries putting that inside of her (though, come to think of it, I'm not really sure I'm strong enough to rip my shirt off like the Hulk. Not to mention, it would be incredibly immodest of me to do so...so...I'll have to think about that).

How can you ever feel okay with poison going inside of your child's body? It turns my stomach. If I didn't know so strongly that this was the right thing to do, I don't know if I could go through it. But, I do, and for that reason, I will restrain my inner Hulk (at least for a little while, while I look for shirts that are cheaply made and would be easy to rip off...while also trying to solve the modesty issue...).

This part is really hard, watching it go in and knowing what is coming. It's so unsettling and evokes many emotions. Ani feels the same way. And, the waiting. Knowing that happy, bubbly Emma will not remain that way for much longer (but we'll enjoy it while we can!).

Sweet baby girl, I wish more than anything that I could do this for you. I really don't want to see you suffer. 

Tomorrow starts two more chemos (fludarbine and cytoxin), as well as ATG. She'll have four days of those three drugs. On day -3, Cyclosporine is started. August 1 is a day of rest. August 2 they collect the donor cells. August 3 they give her the new cells. Just another week...and about that time, they predict it'll be pretty much misery for her.

But every day is a step closer to getting better, right?

Now I think I need to go cry. I miss my other babies and my husband. I wish they were here.

Friday, July 26, 2013

We are here...

July 14th (this was written when we were admitted for transplant last week)

It's been over five weeks since we packed up our bags, packed up the van, gave hugs and kisses, and left our Texas home to bring Emma to Cincinnati for her bone marrow transplant. 

Even the sky was crying that day. 

Those last moments together with my remaining three children and husband were some of the hardest moments we've gone through. To know I had to give those last hugs and last kisses on those tiny cheeks and *actually let go*. I didn't know how to let go. I kept feeling like I needed to give them just one more kiss. One more kiss. One more kiss. One more hug. I wanted to leave as many with them as I could. I needed to give them six month's worth of hugs and kisses because I didn't know when, or if, I'd see them again while we were away. My arms were already missing them, and I hadn't even let go yet.

I knew the moment I let go was the moment that we would start our new adventure, and I knew that our new adventure didn't include us being together. I wasn't ready for that. I wasn't ready to start an adventure where I wasn't there for all the little things and all the big things. I wouldn't be there for *any* of the things. I knew that when they cried, I wouldn't be able to hold them. I knew when they got hurt, I wouldn't be able to comfort them. I wouldn't be able to touch, feel, smell them. I wouldn't be there, and nothing could ever give that time back to me.

I watched the last hugs and kisses from father to daughter, the not wanting to let go, the long holding, the tears. The hurt in his eyes that he *had* to let go. He had to let her leave. That he had to be separated from her. The way he held the baby, the way he looked at her, hoping she'd remember him. The way he looked at me, held me close, neither of us wanting to let go, knowing we would have to go through the hardest, scariest part of our marriage - apart.

I watched the last hugs from sister to siblings and cousins. I watched them cry, some understanding better than others and not wanting to let go. They didn't want to say goodbye, but they knew why they had to. I saw them be brave in a way that doesn't seem fair. I saw them embrace, then finally pull apart, then walk away.

I watched my sister give her daughter her final hugs and kisses, as she lent her to me, to help me at transplant with the baby, while my sister remained to help with our remaining children. I watched my other sister, who chose to temporarily leave her home and husband to help us, standing there with her five children, also extending her wing over my remaining three children. Then simultaneously, over five hours away, another sister was preparing to leave her home, to meet me in Cincinnati to help us through the transplant process, missing out on precious time with her husband who will likely be deployed before she makes it home.

We don't have words to express our appreciation to each of them and their families. It has stirred emotions and feelings in us that we have never felt before. To see others sacrifice so much for our family is incredibly humbling (and more people in many more ways than this!).

We knew that Emma might not come back home, that it might be the last time we would see her there, the last time to see her walk out of her room, the last time to walk down the hall, the last time to hear her laugh there, the last time for her to be there, the last time our family would be like we were right then.

We did say our final goodbyes, we did leave, and we've been in Cincinnati for five weeks now. It's surreal that we're here - that tomorrow, Emma will start the fight for her life. Literally. Her immune system will be completely wiped out, and she'll be given new cells soon. A chance to live.

While we don't know the ending of this chapter of our lives, we know the ending of our story. We know that through Christ, and what He's done for all of us, there is absolutely a "happily ever after" to our story...and that's what we ultimately hold to and what brings us peace, as we prepare for all of what these next few months bring.

Thank you, everyone, for being there and extending your love and support! It's meant so much...more than we can express. 

Here she is today, getting checked into her room on the bone marrow transplant unit.


---

Emma ended up being discharged after less than a week before they found a virus and needed her to get better.  So, we went back about 10 days later from when we originally went in.
---
Wednesday, July 24, 2013:
Getting ready to take Emma to the hospital today, to be admitted to start her transplant process, was hard. I had no motivation, felt kind of angry for no obvious reason (other than the my-child-is-about-to-start-a-process-that-she-might-not-survive reason). They called and told us her bed wasn't ready yet, giving us more time. We felt relieved. But then they called again, about an hour later - it was time.

Group hugs all around, and we walked, with way too many bags, to the elevator to get out to the parking lot. Standing, waiting for the elevator, Ani and I looked at each other. I could see she was holding back the tears. I was too. Little wobbly Emma was standing there "healthy" (unless you include the part where her body doesn't hardly make blood or hardly has any marrow). It was hard to look at her, knowing she's going to go through such awful stuff. And, we, the ones who are supposed to protect her, are taking her there. I feel like there's that internal conflict. I know that this is to ultimately save her, but to know what she has to go through to get there...it's hard. I felt like I had lead feet. They didn't want to take me where we needed to go. I could tell Ani felt the same. But it wasn't time to cry. For Emma's sake, we needed to suck it up like the ninjas we are and just get there...keeping it relaxed and easy going for Emma.

We drove over, making jokes to each other and laughing hysterically. The kind that can quickly switch into crazy person crying. Emma probably officially thinks we're crazy.

As we pulled into the hospital, I said, "I think we need to pray." Ani said, "I was just thinking the same thing." So, we arrived, we had a moment of peace, Ani prayed, and we got out.

We realized that last week when we did this exact same thing, when we took Emma to the hospital to be admitted for her transplant (that ended up getting canceled due to a virus), it felt surreal. This time it felt much more real. It was harder.

I was still feeling the anger inside. It's not really anger at anyone or anything in particular...mostly just the seriousness of the situation...and the tears that were wanting out but couldn't come right then. The reality that a thousand miles away, another young one with FA, a young adult, a young mother, is laying in her bed, dying from her transplant experience...just a day or two, maybe only hours, left to live...having to say goodbye to her 14 month old son, leaving her mother and saying goodbye to her fiancé. It doesn't seem right. That there are far too many with FA that have that result. That have so much to live for. Family that loves them so much. Family with incredible faith. But they don't make it.

I know God has a plan. I don't wonder about that part. I know what is meant to happen, does happen. But it doesn't make it easy. To know that we are facing this reality right now, that we don't know our outcome, that we've watched so many, over the past ten years, have good and bad outcomes with transplant. It's hard to not know what the outcome for Emma will be. What will life be like in a year? I know what we hope and pray for. But what will the reality be? Only God knows.

When we were making the decision to transplant or not, when I prayed about it - harder than almost anything I've ever prayed about before - when I asked The Lord to make the answer incredibly clear, He answered that prayer. And I've never doubted it since. I don't think I ever will. (At least I hope I don't.) l may not know how she'll do through it all, but I know God's is watching over her. I feel so strongly about that.

As we walked through the parking garage towards the elevator to enter the hospital, I looked over at Emma. Watching my firstborn - the one that made me a momma for the very first time, that taught me just how intense a mother's love is for her baby - i saw she had tears starting to spill down her cheeks. I felt my heart break, and I asked her if she was okay. She said, "It's just so hard not to cry." I said, "I know.". I tried thinking how hard it must be from her perspective. I gave her a hug and asked her what part was making her cry. She said, "When you hit me in the head with your bag." My eyes about popped out of my head, and I said, "I hit you in the head with my bag?!" She said yes, and suddenly I noticed the little egg forming on her forehead.

Nice.

And it makes me laugh hysterically.

I did apologize several times. (I had a few bags and didn't even notice!)

We got all checked in, laughed a lot, and had a good night. I'm back over at the RMH now with Ella. Soon I'll be spending nights with Emma too, once she's feeling sick, but for tonight, Ella needs momma time while she can have it. Auntie Ani is with Emma. I'll be back in the morning.

Chemo starts tomorrow.

Photo: Here's Emma. It was my favorite photo from the night because it cracks me up. She was being goofy and posed like that on purpose. We have brought in as much of home as we could...blankets from family and friends, and specials toys too. Thank you, everyone! We'll be getting photos up in the room soon too.


(If you notice a different in photo quality, it's because sometimes i'm using my iPhone and other times I'm using my camera.)

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Thursday, July 25, 2013

Chemo started this morning. They started chemo. Emma has had a dose of chemo. Doesn't matter how many ways or times I say it, it's weird.

They pre-medicated her with some anti-nausea meds, which is why she's drowsy in the photo here. This was taken a few hours ago, as they were setting up the chemo. 



It's now all done and she's feeling fine, just a little sleepy and homesick. She might feel some side effects from it this week, but it sounds like it will probably be a few days before it starts getting very bad.

The nurses have been great! I think they must have a "are you a really super awesome person" question on the job application to work here because they all have been.

UPDATE 9:54PM
So, today Emma had her first dose of chemo. It's called Busulfan. I can't remember what they called it, but today was like a trial dose. Then they tested (taking vials of blood) at specific times throughout the day, for hours. They then run tests on those and it shows them how her body handled it. Then they determine future dosage from that.

Or something.

Emma did fine with it. They gave her anti-nausea meds that made her drowsy, but she didn't sleep.

Her dressing for her c-line needed to be changed. So we finally gave her a shower! Having the c-line, and timing her showers with dressing changes, has been slightly challenging for us. So, SHE'S FINALLY CLEAN!!

They changed her dressing. She meowed like a cat most of the time. One of the nurses will make noises back and will play eyebrow games (up and down and fast and weird) and nostril flaring games with her. It's really funny.

I caught her making a funny expression during her dressing change (which was right after her shower, as you can see!).  It made the nurse and I laugh a lot:

She was hard to get to eat much. But she really liked yogurt. Hopefully that'll stick around. Her appetite has been going down hill the last couple months.

Oh, and without too much detail, Emma is having an odd side effect (that she's too young for) from what they think is caused from a hormonal imbalance from having an ovary removed (which was done to preserve fertility). They'll be giving her meds to hopefully stop the minor issue.

She was in a great mood today. Where she once talked to no doctors or nurses and was terrified, she's been a chatterbox. She seems to feel pretty comfortable with things and with the nurses.

I'm back at the RMH to spend a little time with Ella and spend the night. When Emma is sick, I'll be with her at nights too. Ani is with her tonight.

Photo: I know the photo seems a little random, but I meant to post this last week. (Plus, all the photos I took today are over at the hospital.)

Meet Roger. He's the Supreme Ruler of the Parking Garage and the All Knowing Eye of Where There is an Open Parking Space (I know, it's a long job title). For real, he always seems to know where open spaces are and doesn't even make fun of me (out loud) for any embarrassing driving I might do.

I'm not sure how or why...but he's my newly adopted father. If you see him, tell him I sent you. Hehe. Or just say hi and tell him how awesome he is because he is. Thanks, Roger!


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So, now you're caught up, and I'll to keep it updated!

Sunday, July 21, 2013

Today home health came. Emma had a dressing change for her c-line because the dressing had pulled up, exposing the area where her c-line goes into her chest.



Rhys (3) really wanted to sit with us, which meant she had to wear a mask like the rest of us, which she happily did.


She wouldn't stop giving me kisses...through the mask. It was very cute and funny.

Emma got pretty emotional and cried a lot during the dressing change and for awhile afterwards. She is super homesick & doesn't want Dad to leave, which he's doing sooner so that he can come back later. He wishes he could stay the whole time.

She cried quite a bit, wishing she wasn't sick and could be home and be like everyone else. It was pretty heartbreaking.



She's a tough girl. She's had a lifetime of dealing with too much medical stuff. It'll be nice to be on the other side with a healthy Emma.

We promised her when she's allowed, we'll travel the world and go see & do whatever she wants. She's had a compromised immune system for years and it'll be a whole new life to live like normal. Disney World is top on the list.

 Wish I could take away all her pain and do it for her. ;(

Then later that night, Rhys fell asleep sitting next to us.




Later on, I got some texts from TS.  He's staying at my sister's house, with Violet, several hours from home.  My sister (a hair stylist) had just cut his hair by my request because his hair was getting ridiculously long.  He was really excited to show me his hair.

So, he sent me this text of himself:

Doesn't his hair look great?  What do you mean you can't see it very well?  hehe...that's what I thought too.  So I asked him if he could send another one, holding the iPad up a little more so I could see more of his hair.

This is what he sent:

And another attempt:

hehe.  It made me giggle.  He's so cute.  Leslie ended up facetiming and showing me his hair.  It was still all wet, so it's a little bit hard to see what it'll look like.  But, seriously, when you have hair like he did (below) it doesn't take much to look a LOT better!


His poor hair.  This is officially the longest his hair ever was (above).  Now the sides and back are all nicely trimmed.  I'd take a pic and show it, but I CAN'T, since I'm not there.  :(

And, here is my gorgeous Violet that my arms miss holding:

I can't wait to hold my babies again.

Time to rinse my hair.  We're recoloring tonight!

Friday, July 19, 2013

blood work/blood transfusion

This morning, we had an appt to check Emma's blood levels.  We walked over from the RMH.  I was surprised that Emma walked the whole way.  But once we got to the room, she sat on Tyler's lap, closed her eyes, and stayed just like this for 20-30 minutes while we waited.  She looked so pale.



Then she finally moved a little and laid her head on his shoulder.  We couldn't tell if she fell asleep or not because she didn't move and looked like she might be sleeping.  Tyler decided to share a funny story about her, and she started smiling as she listened.  It was very sweet...and sad...all in one.  She was soooo wiped out.

When the nurse came in, she was a bit concerned over how sleepy Emma was.  Then the doctor came in, and she was also rather concerned.  Emma hardly woke up for them.  They went ahead and ordered blood before getting CBC results done.  They still did a CBC, they just weren't going to wait for the results.  Her hgb was 8.2 the day before.  So, odds were that her hgb might be around 7.8 or something.  That's low, but typically she doesn't get THAT wiped out over it.

We found out transplant is rescheduled for this coming Wednesday.  Our fabulous donor was able to quickly reschedule, which we are incredibly grateful for.

They were working on getting Emma in to the day hospital for her transfusion and sent us home to wait so that we didn't have to be at the hospital. 

Tyler carried her home from the hospital to the RMH:

Then they took a nap.

I wish Tyler could stay the whole time!!  (co-workers can't donate their PTO, and he can use the Family Leave Act, but he doesn't get paid for it...which we need.  So, he has limited PTO that he's trying to spread across the whole transplant).

We made it back to the hospital for her transfusion.  It's been fun all being together.

Oh, I forgot!  Her CBC came back while we were at the RMH.  Here are her results:

ANC was at 160.  That's crazy low.  Scary low.  Your ANC gives you a gauge as to how strong your immune system is.  Emma's is almost to 0.  To give reference, a normal ANC would be over 2000.  If you get sick, depending on the illness, typically your ANC will increase as your body sends out more WBC to fight it.  So, someone who is sick might have an ANC at 5000 or 8000 (totally varies).  But, here is sick little Emma who is fighting off an illness and her ANC is down to 160.  Every day, her ANC gets lower and lower.  The illness seems to be wiping out the WBC that she does have.  If she starts running a fever or showing signs of illness (because she doesn't show any!), then they would give her a shot of GCSF to make her body make more WBC to fight it off.  But since she's going to transplant, they will be destroying her immune system via chemo (yikes!), and so if we can make it to chemo, it'll be less for them to kill off.

Her hemoglobin came back inaccurate.  We know it's wrong.  Yesterday it was 8.2.  Her blood transfusion from three weeks ago (?) is wearing off.  It's been lowering steadily as the days go by.  But today it said that it was at 9.2...which simply can't be true.  This has happened two other times where she had weirdly high hemoglobin that we knew the test result wasn't accurate.  Once they retested to verify, and it was 10 the first test and then 7 an hour later.  Anyway, so instead of going off of the numbers from the CBC, they gave her blood because we know she needs it - they are basing their decision off of logic and off of her symptoms.  Someone explained if you are dehydrated at all, your hemoglobin can concentrate and give a false high...which could easily be the case here.

Anywho...here we are hanging out watching TV and eating/playing, etc...while she was transfusing.



I like how I'm blinking and making a weird expression.  I thought they looked too sweet.  Especially Emma.  You can see her blood behind her on the IV.

We'll be heading home soon.  The transfusion is almost done!  :)

Oh, and they will be posting Emma's story on the Cincinnati Children's Hospital blog soon.  I thought that was cool.

Thursday, July 18, 2013

they came

I have more details on daily events on our FB page.  My desire is to update all of that here as well, but I know it's been a struggle for me to do so.  If only I could spend a little more time on the computer, I'd have no problem doing that...but I seem to have time to update one thing reliably and that goes to Facebook because the set up is way easier, faster, and more social.  I'm going to try to get more in the habit of copy/pasting onto our blog from FaceBook, but it might not always happen.

So, if you want the best updating, you can "like" our page.  If you want to get every update, you can click on the "like" button and choose "get notifications".  Then it'll send you a notification on your phone (email too?) when I update.  www.facebook.com/ourlittletasteofheaven


On Sunday Emma was admitted to the hospital to start preparing for transplant.  She was going to start chemo on Monday, but she ran a fever early Monday morning, and so they canceled chemo that day to ensure she wasn't sick.  The plan was to start chemo on Tues unless she tested positive for any illness.  Turns out she tested positive, and so she is not starting chemo until she's better.  They were thinking next week, but our donor can't donate on that schedule.  So, it looks like at least 10 days, but we don't' know for sure. We're still waiting to hear what the donor says.  We'll be staying in isolation at the RMH until then.  

She's sick, but she shows very little signs of it.  She has a mild runny nose, clear, and maybe a little sleepy.  About 95% of the time, she seems completely fine.  Her ANC keeps dropping each day.  It was down to 220 this morning.  Super low!!  Her platelets were down to 11, so they transfused.  Her hemoglobin was 8.2.  It's low, but it's high for her.  Her blood transfusion from a couple weeks ago is still hanging around.

I stayed with Emma during the days, and Ani stayed with her at night.

So, that's the summary of our week thus far!

Yesterday Tyler arrived in Cincinnati.  He took a two day drive to get here.  He brought Rhys (3 yrs) with him.  I knew he was going to arrive around 2pm.  Since I'm awesome, I forgot my phone charger at the RMH, and the hospital drains my phone's battery, so around 1:50, my phone completely died.  I was supposed to meet Tyler at the RMH, but I no longer knew when he'd arrive for sure since 2pm was an estimate. I can't call out on the room phone because it is only a local number.

Anyway, crisis was averted when I got a charger from Child Life.  As soon as I got it charged enough to turn back on, I was able to call Tyler and find out he was just down the street.  I grabbed my bag and got to the RMH as fast as I could and caught him at the gate getting in.

Being that I'm still super awesome, I had forgotten the key to the gate.  I noticed it before I got out of the hospital, so I called and Kyrie ran it out.  She met me at a little side gate, basically threw it at me, and I ran to the car gate to let Tyler in.

Hoping into the car and seeing that Tyler and Rhys really were there was such an overwhelming feeling.  I couldn't believe they were actually there.  We got in and pulled up to the circle to unload, and I jumped out and grabbed Rhys and gave her a good hug.  Then out came more tears, and I couldn't stop holding her tight.  I didn't want to let go of her.



We got in, got Tyler checked in, and he changed...and soon we were off to the hospital to see Emma.  I washed up and walked into her room before Tyler.  She didn't know he was there and couldn't see him through the window.  This is a video of when he opened the door was was suddenly there - surprising her:


Then she gave Rhys a hug for the first time in six weeks.  (Emma is still tender from her three belly incisions and her central line in her chest, so hugging isn't the easiest thing.)



Then she was soon in his lap, not wanting to let go.  



We all cried a lot...several times throughout the night.  Any time I thought about her crying, I started crying.  I took Rhys to the RMH pretty soon after the photos above.  I kept wanting to go back so I could hold Emma.

Oh, and they let Rhys in to see Emma, if you didn't notice!  Since she hadn't started chemo, they allowed it.  So, that was super nice!

We are now back home at the RMH, as of today.  We are mostly unpacked and settled again.  Since Emma didn't start chemo, Tyler is planning to go home sooner so that he can come back and be with Emma for a while later on.  He wants to be with her, but he has very limited time due to work.

It was cute seeing Rhys and Ella see each other for the first time.  Ella seemed quite curious and kind of like, "Hey!  I know you!"  Ella seems so much more baby with Rhys around.

When Ella saw Tyler for the first time, she did a double take and then stared at him.  She didn't seem excited or anything - just stared like she knew who he was but wasn't sure what to think.  He held her and you could tell it felt really good for him to hold her again.  He thought she didn't remember him, but I think she did.

Rhys is messed up with her sleep.  She randomly fell asleep a little after 6pm.  No idea if she'll sleep all night or not, but here's a photo of her snoozing in the pack-n-play:


(I feel like I must add a disclaimer.  My screen is really cool...as in, photos tend to end up with a little cooler color to them than they really have.  So, when I edit a little bit, it's REALLY hard to know what color it'll end up on most screens since my little laptop is not calibrated, and I don't know when that'll happen.  So, if photos look strange, part of the reason is due to that!)

Emma has blood work tomorrow and I'll update then (hopefully!).  If you don't hear from me for a while, check out our facebook page.  Even if you aren't on Facebook, I think you might be able to check it.