Day -9

Last night went great! We can't get her to bed before 9 because she's due for meds around 8 but that's right around nurse shift change. So by the time they get handed off, we handle the medicine and do her mouth care, it's 9. But despite that she slept through the night, through all the vital checks and a diaper change (thanks nurses!) and woke around 7:45, even after the nursing hand off and check.

She's been in great spirits, got to check out the play room this morning, had some visitors (all her grandparents and Ainsley!) and is a happy clam. Though she hasn't napped yet. Only my kid would plow through Benadryl and ATG and stay awake. I wasn't kidding when I complain about our sleep problems! Baby #3 better take after me and love to sleep :-) (note: she finally crashed for an hour and a half at 4).

We have a little hiccup and the cuff that is inside her chest for her central line has been pulled out slightly. It's so hard to manage a little one and all of those tubes.  She is constantly climbing onto the chair through the arm then trying to climb out the opposite side and I'm afraid that's what did it. But it's so impossible to be on her every second of the day.

So they took an x-ray (a portable machine that they brought right to her room! Being in-patient has it's perks :-) ) and confirmed that everything is still in place but it might mean they need to redo her line sometime next week. More anesthesia, more chemicals in her little body....but they seem confident that this is minor and that all will continue on schedule.

***

After a long day of visiting with our wonderful families we are having a quiet evening while Selene eats some dinner. Then it's bath, evening medicine routine and hopefully bed for everyone! I thought we'd stay up and watch tons of House of Cards but we can't keep our eyes open after we get her into bed!

Here's to hoping for a relaxing, healthy Sunday before the intense Chemo starts tomorrow night.

Going for an x-ray to make sure her bones are healthy.

This beautiful balloon was delivered by some sweet friends! She loves "my balloon."

Sound night of sleep, dozing in the sunlight as I stare at her gorgeous face.

Needless to say she missed a few spots.

Getting used to her mask since she needs to wear it to leave her room.

Checking out the playroom. 

Shredding a package of wipes. Dan wanted me to stop her, I figured Aetna could take the hit 

Lunch time

Got a chance to grab some coffee and take a walk with Dan

"I take picture."

The girls were so excited to see each other!

I just missed Ainsley reaching in to hold her hand after she woke from her nap.

Eating all the kale garnish from her plate, her mother's daughter.

Beanie Betting!

Because Bells are terrible, we proposition bet everything. Dan and I were discussing what this transplant could possibly cost. So if you're interested, make a guess!! I mean, we need something to keep us entertained for the next few weeks, right? We're aiming for just this admission for the transplant process, not pre-testing, etc.

Winner gets a framed picture of Beanie....once her hair grows back :-)

Beanie BMT Cost Betting

"Tubies Hiding!"

And it begins...

We once again were given a 1:30 procedure time meaning Selene couldn't eat. This is my hobbit, who has like 4 rounds of breakfast before lunch time.  But on the bright side it gave us a relaxing morning with Ainsley and my mom. We drank coffee, played, and enjoyed each other. Selene was a champ and enjoyed her clear popsicle and apple juice until 10am.

We got to the hospital and Nana Bell was meeting us. The child life staff member found an awesome fisher price princess castle and Selene was good to go. She did ask Nana for goldfish quite a few times since Nana always fish in her purse, but we all survived.

I held her while they put her to sleep, which is the worst because she hates the mask over her face and it's a bit disconcerting to watch her eyes roll back and close. But we all needed the break and we had some delicious lunch in the cafeteria (Baby 3 was especially eager for the lunch). While we couldn't afford the price or the calories (my doctor said I should aim for 1lb a week in the last trimester, good luck with that while stuck in a hospital) daily it was really yummy.

They actually called us back to Selene when they thought she was waking but she rolled over and went back to sleep. Which was great because the past two times she's had anesthesia she woke up with out me and she lost it. She still cried and was inconsolable for a bit because of disorientation, hating the tubes and having a sore throat but some crackers and Disney Jr calmed her enough for our move to our new room.

Playing with the princess toys they found for her!

Mommy got to wear a Bunny suit and go in and hold her while they put her to sleep.

Sound asleep, I couldn't stop looking at those cheeks!

She always wakes up angry and upset after anesthesia, thank goodness for crackers and Disney Jr! 

Non-Medical worries that have been negated:
1. Small room. Our room is great!
2. Uncomfortable sleeping for me. The couch bed feels like a memory foam which I love. While I didn't sleep much with the nurse checks, having to rock Selene back to sleep after a diaper change (they needed a urine sample before chemo), and the normal tossing and turning, I was at least comfortable during it all!
3. That Selene would try to rip out her iv on purpose, she hasn't! Last night her big thing was showing off "tubies" and then "hiding tubies."


Non-Medical worries that have been added:
1. That Selene will get completely tangled and rip her tubies out by accident. I will now spend my entire day getting her cleared of her tubies.

We really lucked out with the most amazing room. Lots of room for Selene to roam, a corner so its huge, with tons of storage and a great view of the front of the hospital.

Her favorite perch, I suspect she'll spend many an hour on this windowsill 

Keeping it classy, CHOP

Daddy reading before bedtime

Nighttime!

Despite a long day and no legit nap Selene was a bit hard to put down after being ramped up with all the rounds, checks, and meeting nurses. I rocked her for awhile then she asked to lay in her crib (a good thing!). I tried to pretend to also be sleeping and when her breathing got deep and steady I got up to set up and she sat up and stared at me. Regardless, we did well enough and woke up at 6:50, hopefully earlier than she'll normally wake!

Morning of day -10
Selene enjoyed a breakfast snack of yogurt (the nourishment room in our hallway always has applesauce, yogurt, milk, juices, cereal, and crackers, which helps when we get the random "I hungy!") She ate her yogurt with a view from her windowsill perch and then enjoyed breakfast in her meal spot at the desk.

Welcome :-)

Morning snack

A morning view

We played with toys, charmed some more doctors, and met her physical therapists, who were great fun! Then a Child life specialist heard she wanted a tea set and showed up with a Cinderella themed tea pot that really brightened her up.

Physical therapy equals playtime!

Loving her princesses

As she was about 2 hours into the first round of chemo she barely touched her lunch and is now zonked out. I think we've got a good handle on the start of all of this. It seemed a bit daunting yesterday but we'll live into it. I'm still worried about eating enough when Dan isn't here. The whole no eating in the room when you are pregnant and the patient is 2 years old is going to prove a bit tough to manage. But hopefully in the next week she begins to trust some of our lovely visitors so that I can run to the lounge to heat something up quickly!

First nap of many

Well, considering that this post took me almost a day we'll see how often I post. Plus, Dan and I know how to blaze through House of Cards!

Love to everyone, thank you for all of the prayers and support! I feel awful not replying to everything but with constant eyes on Selene, finicky internet connection and exhaustion, I might not. But I read and appreciate everything!

Transplant basics

The process of a Bone Marrow Transplant is totally overwhelming and confusing so I thought I would give a quick rundown of what our time here will look like.

Yesterday we had her central line placed. This line is surgically implanted in the vein above her heart and will serve as the location where all drugs and chemo (ok most, she still has to choke down a few antibiotics and such by mouth) will go in. Then blood will come out for all of the tests they need to run and if she were to require transfusions during this time.  Tremendous upside- no needle sticks for any of this work! Tremendous downside- she's trailing around an IV tree and her "tubies" for the next several weeks.

The timeline reads as -10 days prior to transplant, day 0 is transplant day, and then they count positively up as we wait for all of her counts to go up.

Days -10 through -1
Conditioning- Chemotherapy, Immune suppressants, antibacterials and anti-fungals, etc.

Day 0 (March 9)
Ainsley will come down and our Oncologist will harvest her marrow via an outpatient procedure. She'll have pain and discomfort but otherwise will do quite well and should rebound quickly.

Days +1 and beyond
She will have daily Complete Blood Counts (CBCs) run and I assume tons of blood panels as we watch her numbers climb. They don't appear immediately, each type of cell has a range of time when they appear. Her doctor said that in ideal conditions (which he expects) we would then be discharged between days +21 and +28.

There's obviously a lot more to it, some that I understand and some that is going over my head. But hopefully that gives everyone a better idea of what we're doing here!

Twas the night before transplant...

It's the night before the next leg of our Neutropenia journey begins. I feel like we had so many "lasts" today. The last morning for Selene and Ainsley to wake up and play together before our drive to school. I would say it was the last nap in her room, but she refused to nap today and instead played for an hour and a half before I finally gave up and got her out of the crib. Their last bath. The last Neupogen shot! The last time I rocked her to sleep in her own room (and yes I did hold her an extra 10 minutes while staring at her angelic face).

"Last" morning play!

"Last breakfast together."

That's ridiculous because 5-6 weeks isn't that long and we'll be back before we know it. I feel like things will be different when we get home, but here's to hoping things are exactly the same, with a few more precautions and a lot more medicines.

This is going to be a hodge podge of my thoughts since my brain has been all over the place today.

First, I want to thank everyone for all of the love! The wishes, texts, emails, facebook messages, and packages are overwhelming! The visit from our friends who flew to Philadelphia for a fleeting weekend just to say "We're here for you."  And the Youcaring page! The generosity is humbling. So thank you! I had a wonderful conversation today with the women who will help us. She is a cancer survivor herself and is so encouraging! I even scheduled them to come next week so that I could focus on Selene and Ainsley this week and not cleaning!

I am already way behind, as in I've done none, on thank you notes. I am hoping to get time in the hospital to write but know that feel blessed and appreciative of everything!

Secondly, I need to share the amazing soul that is in Ainsley. I don't know where it comes from. I'd like to think I foster this, but I don't think her level of thought, generosity, and love can be taught. My favorite quotes of the day:

"I'm sad I won't see you tomorrow, Mommy. But at least I'll see Nana and Pappy and I know they'll take really really good care of me."

"Mom, just let Selene do whatever she wants. It's her last day at home and she won't get to do lots of things while she's in the hospital."

"Selene, I'm going to come visit you in a few days when it's summer. And I'll wear a mask so I won't get you sick."

"Tonight, when I'm alone in bed, I'm going to say tons more prayers for Selene."

She also came out of her room yesterday with a box that she had taped up, apparently filled with artwork, she had written Selene's name on it and asked me how to spell "transplant." It was for Selene to take to her transplant to make her happy. Then there is the fact that she's been going around the house all week saying "My favorite job is to give Selene my blood!" Because the nurse who examined her explained that it's only her job to give marrow, not to fix/cure/heal Selene. That that is the doctors and nurses job. It is really important that we not place to weight of "curing" Selene on Ainsley. So she is now pumped about her job of giving her "blood" :-)

Third would be that we were once again given an afternoon surgery time. Which means another day of not feeding my hobbit. But I'm not going to dwell on that. We are just going to survive and hope that it doesn't make for a traumatic admission after her central line surgery.

Fourth is that our new friends Lisa and Emma came to visit! Emma went through her transplant last year and is doing fabulously! Her strength and happiness gives me hope. She and Selene really hit it off and I'm eager for them to play again in 6-7 months!

Emma and Selene

My mother in law sends me verses when they seem to fit, it's amazing how many Bible verses fit when you are seeking his presence to walk with you in times of trouble. Today's was extra fitting.

Hebrews 11:1
Now faith is being sure of what we hope for and certain of what we do not see.

Faith brings me peace and I am certain He is guiding our doctors, watching over our nurses as they watch over Selene and that He'll bring comfort to Selene in times of pain and fear.

Gearing up!

We had a long day at the hospital today. Selene was AMAZING. Like, charming, delightful with the nurses, didn't flinch during two, yes two, blood draws (10 vials total, she's a champ!), and even occupied herself with crayons and a little Disney Jr during our 2 hour meeting with the transplant specialist.

We heard lots that we already knew, but it was wonderful to hear the reassurances from our doctor. The risks are scary but he expects all to go well. We're in the best case scenario with a healthy start and a perfect sibling match.

We took a tour of the transplant unit. The rooms were much smaller than I imagined they would be. And the sleeping is either a small couch or a pull out chair. My pregnant self had really hoped for something else. Maybe I'll get a chance to duck out and get to my chiropractor a few times ;-) And my ever thoughtful husband bought me a massage for Valentine's day. So we'll survive!

The other bummer was that because we are doing this in the winter we are visitor restrictions. Which means we can have 4 people on our list and that's it. I know our sisters had planned to come help but looks like the grandparents take precedent and we'll work with that. Ainsley will only be allowed to visit on donation day, so we will have lots of FaceTime in our future.

I was amazed at all the services they have for families. A small room with water/ice, a fridge and freezer and microwave right in the transplant unit. Then across the hall in Oncology is a Ronald McDonald lounge with snacks and drinks stocked and catered dinners donated twice a week. Upstairs is a family center where they have a really nice lounge, coffee (with a continental breakfast twice a week), a library where I can sign out movies and best of all....NAPPING rooms! I didn't see what the beds looked like, but I foresee lots of time spent there when Dad or a Nana is visiting.

One of the little boys was in art therapy in the playroom while we were touring, he was making tie dye shirts! Selene was excited as he waved at her through the windows. They said she's a bit young to do the art, but obviously they haven't met her and her art easel. So I'll do my best to get her included in that. But while he was there his Mom let us pop into his room. Again, not as much storage as I expected but it will be fine. I just have to go in organized and stay that way. I don't do well in cluttered small spaces. Then there's the whole thing with keeping everything clean :-)

There were also tons of huge mylar balloons tied to people's room doors. Beanie was losing it over them, so I guess I know what will be tied to her door next week. Mommy and Daddy are suckers for making this kid happy right now!

We go in Thursday for Ainsley's blood work and meeting with anesthesia and then meet with the other nurses who will be working with us, learning about nutrition and some other things. I'm excited about that. I want to know ALL THE THINGS!

Then next week we move in. Everyone was really sweet and great and excited and I think our time will fly, as long as we have no super scares from infections or complications.

Starting our day!

Coloring fiend

Watching Mickey Mouse during her echo, she laid there for a half hour!

She earned french fries at lunch, little did we know she needed energy for the
 8 vials of blood they needed to take after the first two.

We're 45 minutes into our meeting and she's getting loopy. 

My gorgeous girl

Checking out the view.

Celebrating family, not just the bad stuff....

"You should write about this weekend, people want to hear happy stuff, not just the doom and gloom."
"You know, you're right, I will!"

Then the phone rings....

This past weekend we went to my brother's house, where my whole family gathered for one last celebration. With Justin's birthday on Saturday, mine on Wednesday and John's at the beginning of March, it seemed like a great excuse to get together. With the underlying understanding that it was to celebrate Selene, family, and happiness.

We ate lots of delicious food, the children played, we talked, laughed, played games, took lots of amazing pictures and had the family stylist come to the house for a day of haircuts. We had the best time. There is so much love and generosity in our family that it's overwhelming. I couldn't be luckier if I had picked them myself!

Then we had a fabulous day today with Daddy home. We went to the mall to play a little then had lunch at an Indian buffet, where Ainsley seemed to be out eating Dan and Beanie spilled her rice all over the floor.  Then after some naps and chores we ended with a lovely dinner at Nana and Grandad's to celebrate my 32nd (not 33rd, thanks for aging me Grandad) birthday.

And then of course even when things are going well we get thrown a curve ball.  Our hematologist called tonight and I wasn't concerned after her first message since we have testing tomorrow, I assumed she was just checking in. But after her second call I got nervous (and how did I keep missing her call!?). She said in reviewing the CT Scan results they noticed that 4 of her thoracic vertebrae were compressed. This is apparently the type of thing you see in adult women with osteoporosis or after a traumatic injury like falling from a horse. There is nothing I can think of that would have caused a compression fracture. Especially since they said this happened a long time ago as it is long healed.

Now we have to be seen in their bone clinic to investigate her bone health.  I'm not sure if it will happen prior to next Thursday or if they can do it one of the first days she is admitted. There are minor concerns over some of the medications and steroids she'll be on during transplant, possibly having an effect on bone density, etc. I also don't know if she'll have long term effects from the fracture (yet, again the specialists will all have more answers after seeing her).  So, it seems to always be one more thing.  I am going to hold out hope that this is an anomaly or that someone in my family dropped her when she was a baby and there's a good explanation.  With treatments for bone health I'm not going to add this to the worry list until I have to.

Just 9 days left at home. Trying to prepare the girls' understanding of what's going to happen over the next few weeks and make the most of it!

-Update: After our hematologist researched and the BMT specialist contacted some colleagues they confirmed that low bone density is a side effect of Neutropenia, which ultimately makes sense since bone marrow function/bone health are all related. So we'll have lots of appointments now with the bone clinic but they aren't worried, so neither am I.

My generous, loving little soul

I never want her to stop twirling!

Not even prompted, this girl is a natural

Blessed!
The beautiful photography of my brother! (John Malloy Photography)

Was today just a glimpse of the future?

Ultimately, I shouldn't really complain about today. You expect to wait. You expect fasting to be tough. You expect the day to not to be fun. But it just had so many ups and downs and I can't help but need to get it out.
I thought for sure a 2 year old who had to fast would be in the morning. Then we got a 1pm appointment. Then I got a call around 9am today asking us to come in at 11:30, fantastic! Except, somehow there was a mistake and nothing was actually moved up. So we went through check-in and got settled in a tiny room only to find out the anesthesiologist had us on his schedule for 2pm. I wanted to cry. Childlife brought a DVD player with Tangled (She loves Punzle!) and some toys. Other than a few heart breaking moments of her digging through our bags looking for snacks then banging on the door yelling "I hungy!" she did famously. I couldn't have been prouder.

Finally we got to take her into the CT scan room, and I held her while they put her under. She struggled and was scared and then her little eyes closed and she was out. I shed the first of what I assume will be many tears. But I pulled it together fast, there will be a time for that and an easy test isn't that time.

I think the hardest part of all of this is that it's a 5 minute test. If she was old enough to have laid still then we wouldn't have had to go through all of that.

I wanted to be there when she woke up but we were brought back a few minutes too late. So by the time I took her in my arms she was hysterical. She kept trying to rip her IV out, she wanted nothing to do with the monitors, the nurse, me or the popsicle a lovely nurse brought to her. And all I could think was that in two weeks she's going to have a central line attached to her chest and cables and tubes attached to her for weeks! I know she'll get used to it, but it's going to be a few long days getting used to it, I think.

She also kept asking "Time go home? All done?" Heart. Breaking. Hopefully we can make her room as happy and homey as possible.

I also learned that I do indeed need to remember to eat and take care of myself. Because I wasn't feeding her I wasn't feeding myself. I tried to convince Dan he didn't need to come today. I'm so glad he did! Because by the time I gave in and ran to the cafeteria to grab a salad I was shaking and in pain. So Baby #3 gets bumped a little higher on my list of priorities (not that she wasn't before but I have to remember).

Add in dead stopped traffic on 76 and realizing my back tire was so flat my car was leaning to the back left and we had quite the day!

Thankfully it ended with Selene happily twirling in her Cinderella dress, Ainsley telling me all about her day with Nana, showing me the book she created for Selene, telling me about how she was the only one to earn a marble today because she gave a classmate the pony that she had gotten to first but the little girl wanted, and rocking my baby girl to sleep. I can't ask for more than that!

Each day at a time. Even if this is a glimpse of our future, I don't think it's more than we can handle.

Surviving the morning with popsicles, white grape juice, and Sleeping Beauty.

She asked for a snack, then found the toys.

The beginning of the 2.5 hour wait, happy girl!

Playing Barbies with Daddy!

All smiles

Alright, this is enough. You didn't have snacks in your bags, open this door now!

"Open, Please!"

Oh, sure, you can distract me with Tangled.

Not so sure about the machine with the jungle animals!

The blurriness just furthers to express the sadness of this moment.

I accept your peace offering of pretzels and popsicles.

And the day ends in princess gear with an Ainsley Photobomb. Can't say that's all that bad of a day.