Sunday, May 26, 2013

S'more Flowers Please

We've been enjoying being home...working on finishing the 1st and 2nd grade, going on walks, riding bikes. Saturday was a ton of fun. My parents came to visit for the day, and we put them to work planting flowers and roasting marshmallows.
Cocoa Basket Hats
Filling the baskets. The kids did most of the work with Manga's help.
Taking a break to swing! Esther and Frannie could swing all day. Esther gets HIGH and fast! She's never really been afraid of much and is naturally coordinated (that was definately not inherited from her clumsy mom).

Talking to the chickens
Eating Dinner
Sometimes I can't believe Rourke is so grown up. He is a helpful, kind boy and will pass me in height sooner than I'm ready for! You can see some of the finished baskets in the background.
After dinner we roasted s'mores! My dad helped hang the lights on our pergola. When we moved into this house nearly five years ago, I dreamt of evenings under twinkly lights. Five years later, we finally hung some up!

Part way through our s'more roast Lydia matter-of-factly announced she would take a break. She needed to go pull a you can see, she's been having some practice...she only has her front two teeth! Frannie lost one of her front teeth just a few days before. We love our patio...check out the s'more roast this same weekend two years ago. It's funny to note Rourke was the one losing teeth back then. I've also concluded I do love the outside of my house more than the inside.

Anthony and I would be so blessed by prayer as we are getting back into more focused parenting. Our kids have been so resilent through all of this. However, as we've been living a more normal life, we are seeing some gaps where our kids' hearts need nurturing. It is a balance between growing character and just loving them through the hurts they've had over the last year as their own lives have been tossed to and fro.

Esther has one more glorious hospital/appointment free week! We'll have a couple appointments the first week of June and then be back for a 5 day stay in the PICU starting June 10th. Esther's skin is beginning to dry out and peel from her at home meds, so prayer for her to tolerate being slathered in cream would be great. She also needs to gain a few more pounds, but is lacking an appetite. Maybe s'more s'mores will help!


Tuesday, May 21, 2013

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 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!


Friday, May 17, 2013

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:

Thursday, May 16, 2013

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.


Wednesday, May 15, 2013

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 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


Tuesday, May 14, 2013

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 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"

Monday, May 13, 2013

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.

Friday, May 3, 2013

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....

Thursday, May 2, 2013

Extraordinary in the Ordinary

Tonight God gave me one of those gifts that is just beyond words. It wasn't costly, but a true treasure.

My dear friend brought us a meal today and included some cookies that she knows are my favorite. They are my favorite because they are delicious, but also because they were my Grandma's recipe. What my friend didn't know is that three years ago today is the day my Grandma passed from this earth.

Carrot cookies on her plate

This no a coincidence. This is a gift from a loving Father who is in every detail. Every. Detail.

I had the opportunity to give the eulogy at my Grandma's funeral. It was shortly after Easter, and in the Catholic church there are rules about how long a non-priest could speak, so I had 5 minutes. I think it's fitting to post it again today.

The smell of an attic, the criss-crossed lines of the cord on a vaccum, or sweeper as she would call it. The scent of original Dawn dish soap, the boom of ice on a frozen lake or the crick at the cabin, carrot cookies gently tucked between layers of waxed paper, an exercise bike, a shamrock.

These are just a few of the things in life that remind me of my Grandma. Although these things are ordinary, Grandma was always extraordinarily present. She had an overflow of love, faithfulness, and joy not just in the big things in each of our lives, but she was committed to loving us in the everyday, ordinary details with a whole heart. Her love and her life have left a mark on each of us that will live on.

Early in our marriage Grandma & Grandpa joined us at the cabin for a couple of days. That was the first time I clearly saw the beautiful intimacy in her love for her “Willy-Woah.” She was finishing his unspoken thoughts and knew what he wanted before he ever spoke his need. It was magical to watch the way she suited her husband. Grandpa is a man marked by a woman who adored him. Their marriage has been much to desire. Grandma delighted in being Bill O’Neill’s wife, and he was her best friend. She was a constant support, a happy companion eager to help her husband in any task, large or small. Together they accomplished a lot! She loved to hold his hand, simply enjoying his company, and calling him a “show off” when they played cards. Grandma loved living life with Grandpa.

I have always aspired to live like Grandma. One thing that always stood out to me is the way she truly found joy and contentment in the happiness of others. Grandma and Grandpa alike have displayed profound generosity of love, time, and resources. The clearest picture of this generosity is in the cabin. When I would call to say how thankful we were to be there, she would always say, “It sure does make me happy that you got to use it. That is why I bought it!” When I was at college, Grandma would send me a card with some “milk money” and as more of us went to college she had to stop because she wanted to be fair. She was broken hearted over it because she just wanted to give. She supported her children in 4-H, beauty pageants, boy scouts, and race cars. She bought us school supplies and sewed us costumes. She has left so many marks.

In my dad, Larry’s life I see Grandma’s mark in a tender, compassionate heart. As a young boy, his tears from Jesus’ not having a bed come from her tender soul.

In Pegi, I see Grandma’s mark in love that is not passive, but shown though intense daily devotion and faithful action.

Nancie displays Grandma’s ability to make things fun, a love of little dogs, and the ability to find a treasure in almost anything…and manage to hold on to all of those treasures. I loved exploring the attic with Grandma. She always said that she felt sorry for whoever had to go through all of the things, but I’m not sorry. I’m glad she kept it all.

My mom, Tracie, is marked by the desire to pour into the lives of her grandchildren. Grandma provided an example of delight and joy in our lives.

In Frank there is a mark of wit and a good joke.

In Angela I see Grandma’s goal oriented drive. The ability to have a dream and to carry it out. I think of Grandma & Grandpa’s bicycle trip to Ireland and her thousands of miles on the exercise bike.

In my brother Bill there is a mark of creating and enjoying an adventure. Grandma used to bring us into magnificent adventure and I know she enjoyed it even more than we did!

In Joe I see a mark of protection and a love of the outdoors. With Grandma we were never afraid of the woods, the dark, or coming upon a bear. We knew we would just need to raise up our arms as high as we could, look at the ground, and back away because that bear would be afraid of us.

In Robin I see Grandma’s appreciation for a good reminisce. Grandma always had a story to accompany a trip to Dolly Madison for ice cream or about throwing rocks through a church window, Aunt Mickey’s long beautiful hair, beating up people that picked on Uncle Louis, and how Bernadette is going to float back to Colorado when California gets hit by the “Big One.”

In Amanda there is a mark of a mind made up.

In Megan’s life there is a mark of loyalty.

I’m not sure if Courtney can smoosh a spider with her thumb, but she is marked by an appreciation of things that make most of us squirm. Every time I brought a friend to the cabin, they have asked about Grandma’s bone collection on the shed.

There are so many things I will miss about Grandma. They way she would say, “Well, Hello Dolly!” when I called and how she loved to let our kids jump on her bed. She has left marks on each of us and we can carry those on to others. What marks has she left on your life? What ordinary things did she make extraordinary for you? Through her faithful love in each of our daily lives, she certainly lived extraordinarily.

For their 50th Anniversary, Grandpa & Grandma took us all to Glenwood Springs.
One of the last times I saw my Grandma.