Beanie's Blog

Sunday, April 12, 2015

And...bump....

So I think we've had our first disappointing news of this whole endeavor. Tuesday, while everyone was super pleased with Selene, Dr. Olson left the room saying "But don't get discouraged because there will be bumps." Well, Friday afternoon brought our bump. Our outpatient Nurse Practitioner called to say they got her first engraftment study back. On Tuesday I asked Dr. Olson what % we should be looking for and he said 80-low 90s. It came back at 71%. My heart sank a little bit but I'm trying to remain optomistic. On the bright side for Beanie this dropped 3 medicines from her daily regimen, taking her 8 doses of meds to 3 for the day, so at least that's become much easier.

The immunosuppressants that they give her to prevent Graft Versus Host Disease can also prevent her engraftment. So they are hoping that by removing one of them that this will increase that %. They will retest her on Tuesday but don't expect too much of a difference yet since we just stopped the medicine Friday evening.

The downside to all of this is that she could show signs of acute GVHD. Rashes, fevers, red hands and feet. So I'm a little worried about those side effects, but I'm not going to worry about that until it happens, and if it does it's all basically stuff that they can treat. And it shouldn't be long term.

We're still struggling with trying to manage her quarantine life. She keeps asking to go when someone leaves, so that breaks my heart. But now that the weather is finally nice she's loving walks and playing on the deck. So hopefully that will keep her occupied until July 9...Just 89 days to go :-)

We've upgraded to fancy dresses for daily wear.

Attempting anything to get her to drink, Miracle cups.

Ainsley rocking her chores.

A dress, a skirt and fancy shoes...yep.

Helping to give Ainsley a bath, since she isn't allowed to join yet.

At least her appetite isn't hurting.

Too cool for school

Tuesday, April 7, 2015

Clinic day 1, success

Selene is once again proving to be a champ. Her ANC is 1040. I was hoping for 1000 or above. The doctor is so pleased and even said we will be dropping two meds in the next week or two as well as discussing the removal of her broviac!

We also got to see beautiful Emma today. She had her labs drawn for her one year appointment next week. So prayers for great news for her and her family would be amazing!

To top off a great appointment we came home to a completely clean house and warm breeze blowing through. Selene may not be sleeping but she is happily playing in her crib and I'm considering another cup of coffee (chased by water).

Life can be wonderful sometimes.

Monday, April 6, 2015

A new normal

We made it through the first day of our normal week, well other than the fact that Ainsley was still on Spring Break.

Fluid intake didn't go great but not horrible, we hit the 20s thanks to super milky chocolate milkshakes. Ainsley spent some time with her friend from across the street so Selene and I enjoyed coloring time on the deck.

We head to CHOP for our first weekly clinic visit. Part of me feels like I need to pack a toothbrush and change of clothes because they are going to keep her due to dehydration. I'm terrified and have been having nightmares about it. I hope she drinks something on the way there and at least has a wet diaper I can tell them about...on the bright side maybe potty training will be easy when we start that in a week or two :-)

Coloring

"You color with this crayon, riiiiight here."

My climber

Sunday, April 5, 2015

Christos Voskrese!

What a series of events to be reminded of the meaning of Easter. New and eternal life, the knowledge that no matter what happens there is a life beyond this waiting for us.

We had a lovely day with the girls and some visits from Aunt Grace and John, then Nana, Grandad and Uncle Matthias (the 3 person rule is tough with such big families!). Dan took Ainsley to church with his family, where she apparently danced and twirled to the music the whole service. We had a few egg hunts, a delicious dinner and an early bedtime. As perfect of an Easter as I could have imagined...especially considering I thought we'd still be in the hospital!

Being home has been a whirlwind. Filled with getting used to our new routine, coaxing Selene to drink, flushing tubies and keeping up with four rounds of medicine each day. I know I've said this so many times, but she amazes me. People talk about their 5, 7, 10, 16 year olds fighting medicine, battling them, etc. Selene asks for a towel and a drink, squinches her face, bats me away, then opens her mouth. I've smelled/tasted a drop of all of them and one is worse than the next. I know we have to do this to keep her healthy, and ultimately she could have come home on so many more (we have 6, and two of them are actually because of some bone issues caused by the neutropenia), but I still feel bad putting her through this.

The fluids intake is still a battle, one causing me great stress. We've taken every suggestion given. We even ordered cups recommended by a friend who said they greatly increased her toddlers intake. I'm not getting my hopes up, but we are willing to try anything. I'm terrified that when we go to clinic on Tuesday that they are going to be upset with her progress, need to readmit her, etc. At least this is occupying me enough that I haven't been fretting over ANC and counts.

Tonight was our first bath where she actually sat down and didn't cry. I think it helped that she sat by the tub and watched Ainsley play and was eager to try out the new bath toys. When it was her turn, she yelled "Hooray!" And then held up her tubies and said "Here you go" so that I could wrap them. It was a

Tomorrow, Dan goes back to work. Spring break couldn't have come at a better time. I wouldn't have survived our return without having him home. So now that I'm solely in charge of fluid intake I'm terrified. Hopefully we have a good day so that I have something good to tell the doctors and nurses at clinic on Tuesday.

I hope everyone had an amazing Easter!

Coloring eggs!

How does a Mom of three girls forget pink?

Daddy and Ainsley on the way to church.

Beanie hunting eggs, hating the wind.

Hey sneaky wind, go away.

Thursday, April 2, 2015

"I love homes."

Yesterday was such a whirlwind of craziness. I debated not even posting about going home, but it seemed so sure. Then they rounded on us at 10:30 and said she looks amazing, that she doesn't act like a sick kid and the only reason they were keeping us was hydration. They said that her fluid intake wasn't enough and that if we couldn't get her to drink half of her daily need by noon (16ish of the 33ounces) then we wouldn't go.

Dehydration is the number 1 reason kids get readmitted. And due to some of her medications it is vital that she drinks enough for lots of reasons, including to protect her kidneys.

It was brutal. Because we were pushing so hard she closed up and refused, she even broke down crying from exasperation, it was heart breaking. We tried dozens of different things to get her to drink. Dan finally made a game out of finding puzzle pieces and she earned "winning drinks" every time. That mixed with the sticker chart and we had 15 ounces down at 1pm.

The Fellow and Nurse Practitioner came to see us, saw our ridiculous games and our desperation, and then said they would check in with the Attending. I really didn't think we were getting out of there. But when Abby came back and said "You're free to go." I wanted to cry. Though oddly, I didn't. I didn't shed nearly as many tears as I thought I would through this whole ordeal.

After an emotional morning we were sent on our way and arrived home around 4. The nurse made a comment about how Selene would probably crash in the car since she had such a big day. I joked (more like spoke from experience) that she would last 50 minutes and fall asleep 10 minutes from home....she did. She chatted the whole way "I love homes! Going homes!" I don't know when she started adding an S to things.

Nana and Matthias brought Ainsley up and helped us unpack the car while Selene took her car nap.

When we finally brought her in it wasn't the reaction I expected. She was quiet and shy and sat on my lap for 15 minutes. But after that she clicked into happiness and she and Ainsley happily played the rest of the night.

We had soooooo much to unpack. I felt like we kept it simple, brought home stuff we didn't use (which I put away the week before) and somehow there were so many bags. But I was obsessed with getting it all put away. I totally regretted that decision when I could barely move at the end of the night but at least things were basically in order.

Selene didn't go to bed until 10. She fooled me into thinking she was down but then cried out for me and told me she wanted pizza. When you're worried about a kid who needs to eat and drink you give it to them. She devoured a half a slice of pizza and some water. At least her appetite isn't something to worry about. She's also quite excited about finally being able to eat fresh fruit that isn't a banana!

Today the Home Care nurse came to be sure we could flush her Broviac lines, something we do once a day. It seems daunting at the moment but I think it will be fine. And that should hopefully only be for a month or so.

After that I thought it would be brilliant to eat lunch outside in the sunny if not super windy day. Again Selene retreated into quiet, shy mode but finally realized the fresh air felt amazing!

At this point we are way behind where we want to be on ounces. As I sit here writing Dan is exhausting himself with every trick in the book trying to get 12 ounces of milk into her (we have only 12 ounces down from this morning). If we hit 25oz a day I feel like we will hover above the dehydration danger zone. But I'd be happier with 30 ounces.

Thank goodness Dan is off on Spring Break or else I'd be losing my mind. And most likely holding her down while syringing fluids into her. Even Ainsley is better at coaxing her into drinking than I am.

**Final total was 25 ounces. I got the last two ounces in by making her drink

before I would read the next page of our bedtime book. That's terrible, right?!