The Ultimate Donut Day

Esther is feeling good! She's still a little tired and kinda skinny, but so much better than the weeks following her previous two antibody treatments. We are so thankful, it is such a relief and joy to see her running on her tip toes and making goofy faces.

We've been busy having lots of fun since taking our exit tour of the hospital last Friday.

My kids do know the days of the week...I promise. They are Sunday, Monday, Tuesday, Wednesday, Thursday, Friday, and Donut Day. Donut Day has been our Saturday morning tradition for about a year or so now. Anthony loads the kids up, in their jammies of course, and takes them to the donut shop for a special breakfast. To balance the meal, he usually makes sausage when they get home. The kids do their best to tip toe around while I get to sleep in a little. Donuts, sausage, extra sleep...am I spoiled or what?!

This donut day just kept going!

During the day we got to work with several special friends to make Huggable Hope Dolls. Robin was SO excited about how much was accomplished.

The workroom!

Embroidering faces

Cutting Station

Pressing Clothes

Stitching Away

This is my beautiful, creative, sweet sister, Robin with her loving creation.

My friend Lisa with the dolly she made. Lisa was with us when we found out we were having twins...both times! She was the one operating the ultrasound machine and has become a sweet friend.

Our friendsTiffany & Abby. Abby is a Leukemia survivor and a hero to Esther. It's neat for her to see a big girl who was walking this road at a very similar age. And as Esther is most excited for right now, "Abby's hair growed back!"

My Aunt Dee surprised us by coming with my grandma!

 

We'll have another work day in the coming months. For now, this was a GREAT start for Robin to be able to put together many dolls. Thank you to everyone who provided materials and gift cards to create these dolls as well as everyone who made it up to help sew. They are a beautiful, encouraging gift!

But...that wasn't all. Anthony's Aunt Margarita was in town this last week and she's a San Francisco Giants fan. Well....since the Giants happened to playing the Colorado Rockies, we decided to catch a game. It was Lydia, Frannie, Zinnia and Esther's first game...and the Rockies won! So much fun.

 

 

Esther had an appointment in Denver on Monday and everything looked great. So we have TWO WHOLE WEEKS at home with no trips to Denver! Frannie and Lydia's birthday is less than three weeks away, so we have a celebration to plan, school to finish, and flowers to plant. I can't wait!

 

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Going Home!

When we leave the hospital, Esther has a goodbye routine to the "glass alligators."

First we stop on the 4th floor. To say goodbye to all the friends in the giant doll house.

Next we say goodbye to Dory. Her voice is so cute as she waves and saying, "Bye, Dory!"

Then we tell the horsey and the doggie bye.

Then we ride the glass "alligator" down to the first floor. Sometimes she even says "wheeee."

Thanks for praying us thru this round. It was so much better, a grace from a generous hand from a loving Father.

Don't forget tomorrow is the sewing day for the huggable hope dolls. Join us anytime! Here's the details: http://spendandbespent.blogspot.com/2013/04/huggable-hope-sewing-day.html

On The Horizon

Esther woke up so happy this morning. Her puffy face and short hair reminded me of getting her and Zinnia out of bed when they were babies. How they would stand in their crib and be so excited, bouncing a bit, eager to be picked up. It reminded me of these days.

Esther has had a good day today. She's felt pretty well and has had very minimal side effects. We ran the medicine at 75% speed, which has been great so far. She should finish about 2am and from there the goal will be to wean her off her pain meds and any oxygen and then we're outta here!

Earlier this week I realized we only have two more weeks in the hospital. Just two. Esther's next stay will be in the PICU again and then she will have just one final week in July on the 7th floor. Wow. It reminds me of graduation or the weeks before my wedding. Such a happy time that just never felt like it would come. Every hospital stay before this has been knowing we would have more, but the difference is that the end is in reach.

There is something about an end of the day when it's dark outside, and I sit in quiet, lit by a soft lamp. The day is done, and it feels like I've accomplished something. It may not have been spectacular, probably filled with daily tasks and mistakes, the house may not be picked up, but the day is done, and I hope I walked in faith. The quiet brings time for me to think and pray and process with God. Those are some of the nights He has given me peace and filled my heart with gratitude.

It's hard to describe, but the many nights I've sat in a hospital room after Esther has fallen asleep, under the glow of a lamp or a dimmed light, I have felt this same comfort. This week, under this peace bringing light I realized, an accomplishment is near. A celebration is on the horizon, and I am full of peace and gratitude.

Just like those nights at home, another day is coming. I don't know what it brings, but for tonight, and that night in a lamp lit room when I'm not worried about the next morning and just reflect on the good of the day, peace and gratitude flow. God has sustained us, carried us this last year. I do not know what the future holds, but I know God will be there, and He does not change. His love will be no different in the morning.

 

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The Day We Met An Olympian

I remember last summer's Olympics so vividly. We don't have cable, and NBC is impossible to get via any antenna...we tried. We did stream some of the games through our spotty internet, but I missed the commentary. I watched most of the summer games from a hospital room. It was kind of fun because they were on in every room and as a nurse would come in, they would be able to catch an update here and there.

Today was a fun day on the 7th floor with a visitor who brought one of her gold medals. Missy Franklin came to visit! Esther really had no idea how cool it was to meet an Olympian (who has character to match), but she did think it was cool that she could swim really fast backward.

Esther showed Missy her photo book and looked at the medal. It is huge...at least the diameter of a saucer and it looked about 1/2 inch thick. It must be heavy. I didn't think to ask if I could hold it until she had left.

Missy showing Esther her medal

 

Esther has had a good day so far. The nurse practitioner wanted to try infusing her medicine at the full rate since she handled 75% well yesterday. She did well most of the day but started coughing toward the evening, so we turned it down to 50%. Coughing is what led up to her breathing problems during her first round, and it came on quickly without much warning. It didn't seem right to keep pushing the rate if it wasn't necessary. She's also had decent fevers most of the day, which is expected. She will get all of the medicine, it will just take a bit longer.

While Missy Franklin's visit was exciting, I think Esther was more excited to see this goofball who holds the world record in silly faces....

See! She's in awe of him...her face definitely says awe... or confusion or huh?

 

Anthony and Rourke came for a little visit. They found a fun toy for Esther before they came. She was an excellent nurse for Lamby and assisted the good doctor well. She even tucked them in before bed so they don't get cold. Sweet girl.

Esther, Doc McStuffins, and Lamby

 

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Not bad so far!

Esther's even still eating a bit!

I hesitate to post an update. Esther has done pretty well today, just the usual, expected side effects. I have still been pretty uneasy, watching her breathing and blood pressures. She's had a couple fevers today, but they've gone down with tylenol and ibuprofen.

God is kind. He is ever kind. Even in bad side effects and struggle He is kind and good. I hope that is clear. God's kindness, goodness, and love is unwavering even if it doesn't feel that way or if circumstances don't go the way I'm hoping and asking Him for. My love for my children is the same...I love them and there are things they want that aren't necessarily good for them, the right timing, or they just may not be mature enough to handle them. My no to their request does not change my character toward them. At the same time, that no might just break their little hearts with confusion or disappointment. They might get angry at me. They might give me the cold shoulder or a dirty look. I get it, I do the same.

God is kind. Always. Going back to those VBS lessons from a year ago...no matter who you are, no matter what you do, no matter what happens, no matter what people do, God is trustworthy. I don't want to be a woman who sings God's praises just when everything is going well. It's certainly easier when things are going well, but God is no less deserving when things aren't the way I'd choose.

At the same time, God has displayed great kindness today in giving Esther a day fairly pain free, one of her very her favorite nurses, Mr. Ricardo, and few difficult side effects.

God also has displayed great kindness as my dad had clean scans! This is wonderful news and big boost for my mom and dad. Thank you for praying. Would you also ask God to provide him a job? He has been unable to work for the 7 months, so this is a need and a big step in owning his recovery and living the rest of his cancer free, long life!

Here's a video of Esther playing today. Her goal for about an hour was to put these tiny animals onto this spinning thing so they would fly across the room. She did get beaned in the face once, but that didn't stop her. She just mastered the art of the flinch (in the second video...I don't know how to combine videos on an ipad...)

"The Flying Animal Flinch"

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Round Three, Day 1

Esther and I checked in today to the 7th floor....YAY! On the drive down Esther asked if she would get to have her "real nurses." I told her the other nurses from last time are real nurses, but yes, we do get to see her regular nurses. It's nice to see familiar faces and we got to see lots of them today, with several visitors and a sweet nurse, Virginia. I will always remember the first time Esther had a frightening nose bleed because it was scary, but also because Virginia was excellent that day. I just love this department, not the circumstances, but what a gift these caregivers have been! Lydia has a goal to become a nurse at "THE Children's Hospital" (not just a nurse in general, but one at THE Children's Hospital), and I was thinking maybe we'd go to nursing school together someday. I would be so honored to care for families in the same way.

We've started today with all the precautions and preventative measures we can to keep these nasty antibody side effects away. Her medicine is running at the slowest rate possible, she's getting breathing treatments, and I've been slow to increase her pain medicine. Today has been good, she's about half way through her infusion for today and is just starting to have some of the expected, not-so-scary, side effects. However, she hasn't had issues until the end of the first day's infusion, which will be about 8am tomorrow morning.

Painting only won for a few minutes.

One of the Child Life Specialists brought Esther a few awesome gifts for her stay this week. The highlight being a squinky dispenser toy. It's like a gum ball machine, you put the toy coin in, turn the knob and a squinky comes out. She played with it nearly the entire day with a few short painting breaks. This toy even won out over a movie she had asked to start!

So, we could certainly use prayer for our week. For Esther to come through this week without any of the hard side effects she's had with the last two. For protection of her body from long term damage. For this treatment to teach her immune system to fight this cancer and that it would never come back.Margarita was able to make it out to help with the kids this week so Anthony can get a full week at work. Thank you, Wayne, for sharing her so frequently! They will have a great time, I'm sure. I miss them terribly already. The last two weeks were good, the closest I've felt to normal in a long time. Still, my mind is scattered. I forget. A lot. The recent snow storms didn't have to make me think it's still winter...I do think it's still winter. Today's warmth was a bit like being hit in the head with a 2x4, it was so disorienting.

Also, my dad had a PET scan today to evaluate his own cancer progress. Please pray for clean scans and effective, encouraging appointments with his treatment team. He is doing better, but it's a long road to recovery. His treatment was not all that long in duration, but really intense. Please pray that his cancer would not return.

Thank you for your company and encouragement on this long road. We've been carried in the hands of a loving Father through your prayer and support.

UPDATE: 10:30pm

So, the second I posted this, Esther spiked a whopper of a fever and needed a little oxygen....Praying this is the only excitement for the night.

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Kidneys are ok--yay!

Our nurse practitioner called to let us know the protein in her urine is still there, but not at a worrisome level. She would need to have 10 times the amount she's putting out to be problematic.

We don't really have a reason, but she did say as she was researching what might be causing it, she read about how emotional stress can be a contributor to protein in the urine. That would make a lot of sense, as this last month has been rough. She is feeling better now and is more encouraged. I'm glad we have an extra week for her to gain some strength and hopefully some pounds before her next admission.

Thanks for praying!

Also, as I was walking in the front yard I smelled something delightful. Look what survived....