Monday, August 5, 2013

July 31st to Aug 4 (including the Bone Marrow Transplant)

I copied our Facebook entries and pasted them here (nothing new added).  This also includes Emma's actual bone marrow transplant via video. 


Our Little Taste of Heaven
July 31

Last night Emma went to sleep and was woken up every two hours again (so that chemo urine wasn't sitting around in her bladder and so they could ensure her kidney is outputting like needed). She was quite agitated a lot and not feeling well. I ended up sleeping by her on her bed to snuggle her, to try to offer her some relief...however small.

She woke up this morning very upset. She was feeling super sick and wanted to be doing anything but this. She ended up throwing up. She felt okay for a little while and then threw up again. I was able to get her to drink a little bit of chicken broth. She was feeling pretty miserable and crying a lot. I snuggled her as much as I could.

It breaks my heart to see her suffering. We talked about all the things we're going to do when we're done. We'll go to Disney World, go see friends, visit water parks (she really wants to go down a water slide). We talked about how free we'll be when we're all done. That helps focus her to literally fight through all the crappy stuff. The past few years of her life have been very restricted due to such low platelets, super weak immune system, and we can't wait to be all done with that.

They ended up giving her Ativan (sp?) for the nausea because the zofran wasn't working.

After a few minutes, Emma looked up at the nurse and stared at her. She went from being miserable and upset, to smiling. She kept staring at her and started laughing. The nurse laughed back. Then Emma told her that she had two heads. The nurse said, "Hmm...I think we need to give her a lower dose next time."

As the morning has gone on, Emma has gone from seeing two heads, to seeing a girl dancing, to seeing people in a bubble (that she accidentally popped when she touched them), and to seeing all of her stuffed animals moving. She's spent the last hour or two staring at her stuffed animals, randomly laughing, and trying to hold them as they come close (which, obviously, they haven't come close to her).

It's been very funny. She's thrown up twice more during all of this. She's not having a good morning when it comes to that. Actually three times more now. (this entry has taken forever to write)

The happy effect of Ativan seems to be wearing off. It's probably been two hours and we're back to a very sad Emma. I'll write more later and post more photos later.

Speaking of the photo, this was this morning. I didn't realize it while I was taking it, but it was right before she was about to puke.


I feel I should explain (and will repeatedly through out this process for any new visitors to our page or as the pictures get more visual). When we all decided to transplant (us parents AND Emma), Emma and I talked and decided we want to document the journey as well as we can. One reason is, we've known this was coming for forever and have followed other people's journeys, but it's been hard to know what to expect still. The other reason goes along with the first. We feel like visual helps share the reality. I think there tends to be a "line" that people don't cross when it comes to sharing pictures. There's the desire to not show the worst and to protect the dignity of the person going through it.

I just want you to know that Emma has agreed that she's okay with it, and if she's feeling sick, I always ask if she's okay with it at the moment. She wants people to know what a transplant is like...and she especially wants to be able to look back and see what she's overcome. I obviously don't have her pose or anything - just catching the reality.

(Also, keep in mind that most of the time I'm sitting right next to her, holding her, but in order to take the photo, I do have to get up and take them (and it's often after a while of her feeling crummy and having me right by her).

Just saying all that because I know you may begin to wonder when you see her looking miserable and wondering why I'm taking pictures instead of hugging her. We want her to see what she's come through, and we want to help others getting ready to go through it.)

July 31

Emma (after several days of chemo for a bone marrow transplant) was feeling super nauseous today. She's vomited 10 times in about four hours. They switched from Zoloft to Ativan to try to help the nausea. The Ativan has made her much happier...but also temporarily insane (not sure it's helped with the nausea). For the next 2-3 hours, she was hallucinating. She saw a girl dancing, people in a bubble popped, and her stuffed animals all move and she tries grabbing things that aren't there. She laughs at the nurses and tells them they have two heads.

I have several videos and its hard to narrow it down. Here's one. (I might post one or two more...).


Almost done with a quick visit to see the baby. I have the most awesome niece, Kyr, who watches her for me, as well as my awesome sister, Ani, who goes back and forth to help where needed. 

My other three babies are in Texas with my amazing neighbor & friend, Katie, who is watching them while Tyler is at work and giving them hugs & kisses since I can't!

Thank you to all who are helping! 

And thank you to ALL for the packages! Seriously, you all are amazing. It's like a hug each time we get something. 

I've had a lot of address requests and thought I'd post it here:

Emma, Teresa, Ella, Ani, and Kyr
350 Erkenbrecher Ave, Room 48
Cincinnati, OH 45229

My kids back home:

Tyler, TS, Violet, and Rhys
PO Box 1156
Anna, TX 75409

Thank you for all the letters and packages and comments. I wish I had time to respond to each. 


Our Little Taste of Heaven

I know this is a super late update, but Emma has needed a lot of my time, so I'm just now able to update. I know these days will be a blur in my memory - they already are - so this helps...and writing is therapeutic for me anyway.

So, Emma had a rough day today. She puked about 10 times in 4 hours. Then she was super nauseous much of the rest of the day. Luckily they had a med to help her with the nausea. Oh, It didn't help with the nausea at all, but it did make her crazy, and that brought some amusement. (If you missed it, she was hallucinating and stared at her stuffed animals for a few hours because they were "moving" and stuff.)

I briefly went to see Ella. I've prayed so hard that Ella will be okay without me, and me without her, and while I struggle with it at times, she seems to be doing really well with the set up. I know she prefers to have me, and some days are harder than others for her, she's overall done as well as I'd hoped.

My other babies are missing us a lot. They worry a lot over Emma and are some of the bravest most awesome little people that I know.

After I saw Ella, I came back and Emma was nauseous. I sat by her since then until about now. I don't know why it took me so long to think of this, but I was sitting by her when she suddenly felt like she was going to throw up, so I thought to try applying pressure to her pressure points on the inside of her wrists. I'd used Sea Bands during pregnancy to help with morning sickness. And, it worked for her! She was completely amazed and didn't want me to let go. I knew I wouldn't be able to hold the right amount of pressure for forever, so I used some medical tape (folded in half so that it's not sticky), along with a wadded up piece of gauze that I put in the center of her inner wrist, then taped the tape around to apply constant pressure...and created some "sea bands" for her. They work pretty good. Tyler ordered her some real ones and those will be here soon.

Her blood pressure has been high tonight. Top number 130-145ish. Then the bottom number close to 80. They've given her a couple blood pressure meds and the first one didn't do much. We're waiting on the second one to have time to work to see what it'll do. They've had to stop her ATG because her blood pressure went high. So, hopefully they'll be able to start it again and get things going. We want to be done with chemo and ATG! This is the last of it.

Then after we got the nausea under control, Emma's leg started feeling weird and her lower back was hurting a ton. She got super agitated and couldn't explain it. Just lots of tears. I lotioned her legs and gave them a massage, hoping to fix the problem. Then massaged her back. It took quite a while, and a lot of attention, to help relax her enough so she could fall asleep.


About 30 minutes later, they wanted me to wake her up so we could give her a pill for her blood pressure. I understood the reason, but after putting in SO LONG to get her able to settle to try to get the weird feeling to go away in her leg and to get her back to stop hurting, it wasn't fun to wake her. She immediately got agitated again and grabbed her back because it was hurting so much. She kept crying and yelling about it. ugh...

She ended up waking up enough to take the pill for her blood pressure. She was upset over the pain of her back, so I grabbed her in a big hug, and I prayed/begged (in my mind) for God to please make the pain go away. We both need to sleep. And it did. She immediately settled to sleep. Having had such a long time earlier dealing with that pain making it impossible for her to sleep, it was a relief to see such a fast answer to a prayer.

Now it's 1am. I'm going to go to sleep. I have a ton of photos to post, but I'm thinking it'll be a while before I have time for that.

Oh, Emma's immune system is GONE. Alllllll immune system numbers are at zero. It's great, but it's also really freaky. PLEASE PRAY SHE WON'T CATCH ANYTHING. It makes me spastically nervous.

One more thing, (sorry this is a jumble, I'm half awake), one of our favorite nurses told us that Emma has bonded to her more than other kids have (they meow at each other), and she started talking about chemo and how hard it is to see what it does, and she even started crying. She had seen Emma pre-chemo, then was gone for a couple days and came back the day after the chemo hit. I remember seeing her look at Emma and seeing the look in her eyes in seeing Emma go from the happy smiling girl who played to the very sick, miserable girl. Anyway, I'm just not used to medical personnel allowing themselves to feel feelings like that, and she totally couldn't stop herself from crying. It meant a lot to know she felt it too.

Hoping for a better day tomorrow. Though I realize it probably won't be.

Photo is when she was on the Ativan (hallucinating) and she thought her rabbit was really moving.


Our Little Taste of Heaven

That was fun reading that. I hardly remember what I wrote last night. hehe.

Emma had an okay night. She is completely exhausted. Since we've started cytoxin, she has not been able to sleep for more than two hours at a time. They always get her up and have her go potty. She was sooooo tired last night and was not happy about it. (They do it to not let the chemo urine sit in her bladder, as well as to ensure her kidney is working.) This should be the last time for them to wake her up for it, so that'll be nice!

This morning her BP was 134/94, which it's been higher (I think it was 150/100 - not sure what the highest it was). It's been running high since they started the Liquid Evil (ATG) last night.

They slowed down her fluids this morning and now it's 115/64, so that's good! She's sleeping pretty hard. The nausea was so bad for her yesterday, but since applying pressure to those two pressure points on her wrists, she's finding relief. It's interesting that they've used two drugs to help with the nausea, and in the end, it's just a little bit of pressure in two spots that relieves it for her. I'm also a little bit surprised that they don't know about it or offer it here for treatment. It doesn't work for every single person (just like meds don't), but when it does work, it works wonders...and it works for the majority of people. I've talked to maybe 4-5 nurses about it now, and none of them have heard of it, but they were quite interested in how obvious it was working for Emma. They are these thingys:

Anyway, Emma is snoozing away. It seems like this is the first time in a few days that I've had some quiet time...without it being super duper late at night. I'll see if I can post some photos. Probably not. Since I mentioned I had quiet time, I imagine it'll get really busy now. 

Oh, but Emma is doing everything she's meant to be doing. It's a scary process, but she's doing as they expect, which is comforting. She's starting to get a little bit puffy.

Her hair is still attached nice and strong, for those who wondered. But we expect it won't be for another week or two that it starts falling out & I'll be shaving my head with her. I have no desire to know what I'll look like bald, but it seems like such a small thing to do with her to help her through it. Plus, then I won't have to worry about doing my hair at all. haha. But, um, I'm not thinking I'll rock the bald look. I'm pretty sure I'm going to look a little bit too much like an alien. Hats will be my friend.

She just woke up...


Our Little Taste of Heaven

Aug 1, 2013 10:01pm
Today has been emotional (like all of the days have been). Emma is changing more and more, as her body deals with the effects of chemo. She's swelling and having high blood pressure issues. They put her on TPN for nutrition (iv nutrition).

We originally arrived at the hospital with a chipper, happy, bubbly girl...and now she hardly moves, doesn't smile much, rarely speaks, and seems mostly out of it...only she's still in there...just her body is dealing with so much and seems so weak that she can't do a lot. I can see her aware in her eyes and in her words, when she does speak, but most of the time she's very quiet.

I feel like hugging her and holding her all the time and willing all my energy into her. Kangaroo Care works for 10 years old, right?! When she moves or gets up to walk to the bathroom, she's so frail and weak and shakes so much.

When she woke up this morning, her face was all puffy - half of it being significantly more puffy than the other side. Her right eye was half swollen shut, and she didn't like it. It was a bit upsetting to her. She didn't want me to "look at her like that" and didn't want anyone else to look at her.

Tyler FaceTimed in, and she turned her head so that he could only see the more normal looking half. The puffy side she tried to keep hidden from him. She covered half her face so he couldn't see her.

Seeing her hide herself from him like that totally broke my heart. I felt like grabbing her and beaming my thoughts and feelings from my mind & heart into her mind & heart so that she could understand how we feel. So that maybe she could view herself right now the way we view her. It's hard to see her struggle.

She told us she didn't want him to see that side of her face. We told her she didn't have to but assured her that Daddy would still think she's one of the most special and beautiful girls in the whole world. After several minutes, while we were talking of other things, she finally decided on her own to turn her head straight and put her hand down so he could see her, and he immediately told her how beautiful she looked. (Because to us, she really does look beautiful and always will! Even if it is hard to see her change like this due to everything that is going on.)

I feel so raw emotionally today. Seeing how she seems to get worse and worse everyday breaks my heart. I feel so many emotions - good and bad - all possible - all potential reality.

When I view it long-term, I feel excited that we are doing this. We are transplanting. Emma is done with chemo. We are one step closer to going back home, to living our lives, to seeing the world, one adventure at a time. I'm looking forward to seeing her do all those things she's dreamt of doing. This time next year, will we be going to Disney World? Will she be swimming with dolphins? Will she be sliding down those water slides? Will I be back home, watching my babies ALL TOGETHER again? Will I get to sit on the couch and have all my babies around me, all together?

While I feel all those excited feelings, I simultaneously feel feelings completely opposite...and it can feel like such an inner conflict.

There's the very real potential that these are our last few months together, that potentially things will start going down hill in a few months, for any number of reasons, and we might have to say way too many before us.

I feel like our society as a whole has a tendency to shy away from this reality. They tell people to not think those types of things or they approach it as though it's bad to think those things or they turn it into a matter of whether you have enough faith or not...and I don't feel that way. I view it separate from faith. I view it healthy to face it. I view it as the reality of life. The reality of a disease like Fanconi Anemia. The reality of any sick kids like Emma...IT IS THE REALITY. It IS what we are facing. Facing reality isn't denying God or not having faith, and it's not wrong.

For me, when it comes to faith, it comes to releasing things that I can't control and placing it on God. To give my burden of trying to control things, to make her better, to make her live...and give that burden to God. To TRUST that He has a plan for Emma and I put my faith in that. I still pray for her to be healed because that's what we hope and want and know God can do. But, I accept that it might not be what God wants...which is something I struggle with at times...but always believe He knows and sees it all...and I don't.

There's lots of other feelings too. I think about my other babies often, including Ella, since I can't see her often. I know I'm missing all those little things that were once so normal and part of my every day. I miss being in my house. I miss feeling my family close. I miss hearing my babies laugh, cry, fight, scream. I miss their messes. I miss cooking them dinner. I miss hearing them tell me dinner is gross and acting like they have been poisoned by my cooking. I miss hating to do their laundry. I want to do their laundry. I now know that laundry equals family close by.

I miss it all.

But we're not there, we're here. I don't know what the end result is, but I do know that I can hold Emma right now, so I do. And I look forward to the day we can go together on our ninja adventures.


Here's a video of Emma to show what she's like now after all her chemo. She's getting really sick and frail. These are a few clips I stuck together. She's having swelling issues - sometimes more swollen than other times, as you can see. The first clip is from last night. The other two clips are from today.


Our Little Taste of Heaven

DAY 0: Today hasn't been too much different from yesterday. Emma doesn't seem to have tons of nausea since using the wrist bands (for nausea), but she still throws up just as much. They've given her the benadryl plus finnegan-begin-again. It seems to help the best with the puking out of everything they've given her. It also has the lovely side effect of keeping her asleep a lot, which given how she feels, it's a good side effect right now. I did ask about the patch that some of you mentioned, but the doctor that was asked wasn't very familiar with it, so the answer was no for now.

Her blood pressure is still having issues. The doctor thinks it's from the ATG still and cyclosporin. They are still giving her the cyclosporin to help prevent GVHD and will for a while to day +100 or something.

Her bone marrow is completely wiped out. She has none left. That means that her body is making no white blood cells, red blood cells, or platelets (which it was hardly doing before the bone marrow was wiped out). They gave her a blood transfusion today because her reds were in the 6's. Her platelets are in the 20's, but they won't transfuse those until they are closer to 10's. They'll keep transfusing until the new marrow comes and starts growing and producing enough blood itself. When it comes to her white blood cells, there's nothing to replace those right now, so she'll stay at a zero. It's not freaky at all. (Okay, it's SUPER FREAKY!)

The donor's cells were collected today but won't be given to her until tomorrow evening, between 4-6 pm, which is when they are expected to arrive. It's given to her via an IV. The cells go in, go into her bones and set up shop to make blood.

Uncle Torin surprised her today. This is Ani's husband. He came in and she was laying with her back to him. She looked over and saw him. She looked really surprised and smiled. She couldn't get up to hug him and didn't move much, so he came over and gave her a hug.

I went to see Ella and spent some time with her. She does great with Kyrie, but she has a hard time when I leave. She only sees me for a 2-3 hours a day, which is very different for her. It's hard. I hate it, but I feel like Emma really needs me right now.

This entry has taken me two hours to write with so many interruptions, so I'm going to go ahead and post it before something interrupts again!

Emma keeps wanting to sit in a chair. This was earlier today when she was about to fall asleep. She wanted to sit in the chair so bad that I let her, knowing how tired she was. I told her she was falling asleep, and she didn't seem to think she was. This is how she looked. She wasn't in mid-blink. She was determined to sit. She eventually asked to lay down...since she was about to fall over (I was holding onto her).

Good night!


Our Little Taste of Heaven

Last night was pretty awful. Emma didn't sleep well at all and was so uncomfortable. I think she had restless leg because she couldn't hold still and her lower back was hurting her a ton. My back does it too, but not sure why. We tried different positions and moving the bed to different positions and finally found something she could settle in...after forever.

She kept getting up to pee and then puke and had high blood pressure issues. The blood pressure issues are common. This morning she's at 165/105.

To answer questions:

She's not on steroids. The last time was back on Day -2 (that ran into the morning of Day -1). They pre-medicated with steroids. Today is Day +1.

As for length of time in the hospital, it depends on how it goes. But it seems like its around a month usually.

Then she'll be discharged to the RMH where she'll be in isolation. If all goes well, Day +100 is usually when they let families go home. She won't be all done, though. It'll take about a full year from now before she'll be done - before her immune system is fully ready. She'll have to wait for a social life for that long & will be staying at home during that time.

If things go bad, it takes a little while. It usually seems to happen between Day +30 and Day +100 or so. We've seen things seem to be going fabulously and then, after what seems like a really long time, it doesn't do so good (as in, it can seem to go bad almost out of the blue). But the way they are doing transplants now is getting more and more successful.

If I missed your question, please re-ask.  I'm going to nap now. I'm tired!

Oh and this photo is of sleeping Emma. She hasn't been looking comfortable while sleeping...nor acting comfortable.


Our Little Taste of Heaven
Emma's Bone Marrow Transplant
So...Emma had her actual bone marrow transplant today! The process itself, of the stem cells actually going into her body, is incredibly simple (though, the process as a whole, including the chemo/ATG, is not simple and takes a really long time).

They started it off by having 6-8 nurses and child life come in and sing her a "Happy Cell-Day" song that sounds an awful lot like Happy Birthday. :)

Emma gave them all a funny look.

Then about 15 minutes later, her precious new cells entered our room. Those cells that a man, from who knows where, took time to donate to us. It's incredibly touching. We are so appreciative to him...and wish so badly we could give him a hug and tell him a huge thank you! He's changing our lives drastically by being willing to take the time to share his cells with our daughter, to give her a chance to live. How do you even describe those feelings? I don't know how.

I sincerely apologize for quality of video. You'd think that out of everything to take good video of, I would have chosen to do so with this. But most of the time, I wasn't actually paying much attention to the phone. I was focused on watching with my eyeballs & paying attention to my family via FaceTime, and I realize I could have done a little bit better at recording it! :) So, I apologize, but it's still worth the watch if you want to see what the actual transplant is like.

It's a sterile procedure so we all wear masks.

My hubby and children participated via FaceTime.

How cool is that? So...days of awful chemo to destroy the old bone marrow, and now we have the new marrow in her body. It's in there right now - like right NOW. When I look at her, I know it's running around inside of her and soon will be settling down and starting to plant the seeds for bone marrow and blood. It'll be a long process...but it's started. EXCITING!

Please remember the donor in your prayers tonight. Pray for blessings to him and his family...he more than deserves it.
 — at Cincinnati Children's Hospital Medical Center.


Emma is having a weird day. I'm not sure what to think right now just concerned. Yesterday I noticed that Emma's eyes looked yellow. The nurses (who had never seen her before that day) didn't see the yellow. Then I showed another nurse, and she didn't see it either. They looked at her previous liver numbers, and they weren't too bad. This morning she was still yellow. Her bilirubin total was at 3.5 (normal range 0.1-1.1).

She's having some chest pain that makes it hard for her to walk. I had to carry her back to her bed once because she wouldn't walk. She won't move on the bed. I'm wondering if it's the mouth sores starting down low. She mentioned her muscles aren't working normal (fatigued?), which according to my inside spy (thanks, Andrew M) it can be from her bilirubin numbers.

She's having a hard time swallowing. She doesn't say it hurts. She says that she just can't make herself swallow.

She's swelling some, has diarrhea, and her liver hurts her too when we push on it (thanks, again, to Andrew for telling me to check).

She's not moving much and doesn't want anyone to touch her. We did recheck her liver numbers, and they are down a little bit, so that's good! Maybe that means that the anti-fungal med was the culprit.

They put her on some pain meds to help her feel better in case she's in pain and doesn't quite realize it. During transplant, I know liver numbers go up and down...I'm ready for them to come down and for her color to go back to normal because it freaks me out!


The mucositis has officially started. Due to Emma having no immune system at all, she's developing sores all along her digestive tract...starting from her mouth and ending where it exits her body. It seems to have started in her lower throat/chest area, maybe lower, and is working it's way up.

I can now see that a lot of what I was seeing from Emma earlier today, the way she wouldn't move, wouldn't hardly talk, was super protective of herself - batting anyone away if they tried touching her - was because the mucositis was really getting going. It's actually kind of a weird relief because the momma's instinct was saying something was really wrong with her, and this explains a lot of it now. The relief is only in that it's normal and will get better...otherwise, it's quite awful to watch.

I assumed we'd see sores in her mouth first, but we still haven't. Instead, suddenly she went from not moving from her sitting position for hours, to "throwing up" (seemed to come from her throat, not her belly). It's very thick mucous blobs with lots of blood in it. The nurse looked at it and thought they might need to give Emma platelets because the amount of blood was in big globs.

That was 2.5 hours ago. And she's STILL doing it. It's continually coming out. Sometimes it's really slowly trickling, then other times it's part of gagging and like she throws it up from her throat in big amounts.

I fear I may have gone into too much detail.

Oh, and it has quite the stench.

So far she's refusing to try to suction.

They've started her on pain meds to help keep her as comfortable as we can. I have no idea how she's supposed to ever sleep with all of this going on. It seems to build up, come out in large amounts, then it'll trickle in very small amounts...but it's constantly coming out in some type of amount.

Tyler FaceTimed in and got to see what Emma was going through for several minutes. I snuck this photo. It's not easy being apart.


When Emma really wants something, she'll say, "We should pray about that."

She really wanted to see her Uncle Torin, but he had just finished basic training for the the army, was finishing up at AIT, and had his orders of where to report and when, and it didn't fit/allow a visit here.

So, she prayed with Ani about it, and after soooooooo many times of it looking like it wasn't going to work out, Torin ended up coming. I'm still confused as to how exactly, but it did. Suddenly, at almost the last minute, he was able to come.

We didn't tell her, we just had him walk in and say hi. She went from being almost completely reaction-less, hardly talking, to doing a double take and making some of her funny faces again. We assured him that her response was pretty awesome considering how she had been before he walked in.

We're so glad he could come! Ani deserved to see her hubby after so long of not seeing him!

This was taken yesterday, on Emma's transplant day. I love her expression in this photo. Cracks me up!


Oh, and update on Emma, she is on pain meds - fentanyl (because she reacts to morphine in a bad way mentally). It's been really helpful. It's almost like she didn't know how much pain she was in because she's acting more like herself now. It seems to be working quite nicely for her. We'll hopefully be getting her a pain pump tomorrow.

I pushed her pretty strongly (more than I usually do) to get her to try the suction for the mucositis because I thought she'd prefer it. She ended up liking it a lot. hehe.

Also, she didn't pee for 10 hours! It wasn't until they got the meds working that she felt like she could get up and go. I'd asked her during that time, and she said she didn't have to go, but I think it was more that she wasn't going to go even though she needed to. 500 cc...she peed that much! (300 cc was a lot prior to this)

She's got some swelling, especially in her hands. They might do lasix to help.


(Congratulations if you made it to the end!  I'm so sorry it's sooooo long and I'm so behind.  Often I have time to write an entry to FB, then post it and run off.)