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'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.


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.)


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.

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!


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

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