Saturday, March 30, 2013

The Day Our Yard Got "Egg-ed"

Saturday morning we were woken by a huge surprise......

"Did Mommy do the eggs?!"

"What? It's early, what do you mean?"

"The eggs! There are eggs in the grass!!!"


"There are eggs in the grass! All over the front yard"






Thank you to whoever came to Egg our yard. The baskets and treats hidden inside the eggs made a very special beginning to our day. As much fun as it was for us to wake up to a surprise egg hunt, I think it may have been more fun to prepare and hide this surprise...we can't wait to pay it forward! Well done, kind and thoughtful friends.

Thursday, March 28, 2013

Only For The Brave

A little over a month ago, on a cold, tired night, a sweet friend asked me about wanting to do something to support our family.  As we thought about this kindness, this act of love, we knew it was too wonderful to keep to ourselves.

Our friend, full of beauty, singing words of encouragement, comfort, and hope wanted to release a charity album and give the tips to our family.  Humbled.  I think I cried for two nights as I attempted to respond to her message.  Really?  She would share her talent, her hard work, with us?

In one of her recent musical projects, she had recorded a song for kids with little bald heads.  She told me she thought of Esther the whole time.  That's when I knew with whom we wanted to share this unbelievable generosity.

Our friend, Katrina Stone, just finished a special collection of songs and released the EP on Noisetrade.  It is hopeful, encouraging and threaded with words to inspire.  You can download the album, Only For The Brave,  for free and leave a tip if you can.  Katrina is not keeping one cent. She is donating every tip to Brent's Place.  

So, listen and download the album, it's great.
  Tip as much as you want, but don't let that stop you from downloading the album!   
It will "be a light in the dark."
Share this blog post, tell your friends, it will benefit families in an incredible way.

Katrina, we are so grateful.  Thank you.

It is $93 a day to house a family at Brent's Place, but knowing the average cost of a bone marrow transplant is over a million dollars, our friends at Brent's never want to send the family a bill for their stay.  Thanks to generous donors and fundraising efforts like this, families are provided their days free of charge.  We were at Brent's Place for 106 days, almost $10,000.

Not only does Brent's Place provide a place for families to stay, but activities, meals, and support. 

The staff is incredible, welcoming an interruption to celebrate a success, to listen about a hard day, and are always intentional about asking how everyone is doing.    

In Katrina's song, Here For You, she sings, "I'm with you, I get you, no matter what you do, or what you're going through."

Brent's place is a refuge for the parents, the brave kids fighting cancer, and their siblings.  It is a place where they don't have to worry about getting sick or having a break down.  A place for kids to be kids, to make friends, for parents to not have to explain because they are understood.  

One of the groups that regularly volunteer to prepare meals was gathering information about what the volunteers mean to the families staying at Brent's Place. This is what I shared...
"When your life is out of control, the future uncertain, and your precious child is hurting you spend all of yourself caring for them, thinking of them and the rest of your family.  I often find myself feeling very childlike, and just wanting someone to take care of me, to think of me.  When it comes to meals, especially at dinner time, I just can't even fathom giving any more, and my family suffers through another drive thru meal or box of mac & cheese.  A meal is respite for me.  It's a way I am cared for and also a gift of time to just be with my family, rather than cooking and cleaning up.  In a very practical way, a meal cares for me and gives the energy I need to keep going for the next minute, hour, or day. 

Along these lines...thank you [the staff at Brent's Place] for loving us in this way as well.  Just that you are excited to see us and our kids is such a gift.  You get their lives, and that is such a blessing!  I feel very embraced and loved here.  I suspect leaving here will be a bit like going to college.  That moment where you realize you have to do it on your own, but deep down you feel like such a small child and really just don't want your parents to leave, so you put on your big girl panties and just keep moving forward.  At the same time, just like leaving home, I know that if I need it, I can call."

Thank you for staying on this journey with us, for enduring our pain, celebrating our victories, for praying for us, for holding up our weary hearts, for feeding our family, moving furniture and installing floors, for bringing hope when we've felt scared and hopeless.  Thank you for serving our family with your time and finances.  Thank you for choosing to be a health care professional for kids with cancer, for loving our daughter, for caring for her.  We will love you all forever.  There are not enough thank you notes to express our gratitude.  

"Sometimes you to learn to swim, right in the midst of drowning. Don't ever loose your faith, because of the waves surrounding."  
Katrina Stone, In The Midst

Tuesday, March 26, 2013

Long Clinic Day and Just Two Sleeps 'til Thursday

I remember when Rourke was a tiny baby, and I was holding him, thinking that I would always remember the details of those moments. The way he felt in my arms, the click of his mouth as it closed after a sweet baby yawn, his breathing. While I can report on those things, I don't actually remember them in the ways I thought I would.

As Esther's hair went away, the same thing happened. When I looked at her sweet bald head, I couldn't really remember what she looked like with hair. All my mind could muster was imagery from photos. This has happened yet Esther's hair is growing back, I can't remember her without it.

I find myself wanting to remember, wanting to remember the details of what Esther was like before cancer. I had hoped when her hair began to come back I would remember, but I still can't. I've realized this longing isn't just a desire for a memory, but a want that none of this had happened. In the same breath, I am incredibly thankful for many of the ways cancer has changed our lives. God has used this for the good of our hearts.
Today we spent most of the day in the clinic. It felt uncomfortable. Maybe because I haven't done the hospital scene since Esther finished radiation. Anthony spent the last stay with her and then went to her follow up appointments. I'm out of the routine. Also because this part is scary.
When first learning about this phase of her treatment we had the impression that this was supposed to be the easy part. For many kids it is, but our sweet little girl struggled, a lot. I was never afraid of chemo or even transplant. While both brought periods of intensity, Esther was able to endure. She has a high pain tolerance, rarely complaining, but her first antibody treatment brought pain and struggle that she just couldn't handle. Knowing that this is going to cause her pain, make breathing difficult, give her nausea that might not be stayed by the arsenal of anti-nausea meds and then asking her to trust me, to bring her into the hospital and agree to hook her up, brings me back to those first days when her eyes were so confused, wondering why we were allowing this pain to come.
Esther's pain is not like the pain of Christ, but as I've thought about the coming Easter weekend, about Jesus praying in the garden, sweating, just wanting his friends to stay awake and understand, to pray for him, begging the Father to remove the burden of the cross, I feel this way. I see Esther wondering why it has to be this way, and I wonder how painful it was for the Father to lead His son to the cross.
Christ had to die. He had to defeat death to save our lives. The law was not enough, when God is perfect, Holy, I can't be good enough. Esther's treatment is not enough without these last painful months. Through his death and resurrection, Jesus did away with the impassible valleys separating us from intimate relationship with a God who loves, who hears, who holds my hand, draws me to His throne of grace to find mercy and help, who holds my tears in His bottle.
For the next four days Esther will be getting a continuous dose of a protein called IL2. It is in the same family as the meds she's received to help her body recover after chemo or to produce stem cells, but this is the godfather of the family, much stronger than anything she's had before. This will cause her body to produce those cancer fighting cells and amplify the training they will receive during her Pediatric ICU stay next week.
However, it's really just the warm up lap. Monday, April 1st, we will check directly into the PICU because that's when the neuroblastoma killing bootcamp actually begins. She will receive a higher dose of IL2 along with the chimeric acid that will work together to teach her immune system to see and attack neuroblastoma. It is in the PICU because the side effects are even more intense than last time. She will hopefully be discharged on Friday afternoon after her respiratory issues are resolved.
Maybe it's just the compounded weariness of the previous months of treatment, or the possibility of relapse, or the taste of life at home, but my feet are heavy. I don't want to do this. Today Esther's face went from fear to relief when I told her we only had a clinic visit. I felt like I was lying to her because I didn't make it clear that next week she'll have to stay again.
Please pray for her to endure, for her to not be in so much pain, for her nausea to be controlled, and for her breathing to be stable. Please pray this bootcamp will equip her body to fight any future cancer cells and that relapse will never come. Please pray for God's hand on her healing. She has responded so well, but it is no guarantee. Please pray for me to be unselfish and that God would make me strong to comfort her. Pray I would be an encouragement to the doctors and nurses. Pray I would come to the throne, I still have to make the choice.
I wasn't anticipating such a weighty post. This blog is both a means to share updates on what is going on, but also a place for me to process. I guess I needed to process. But....there is still business to attend to. That would be a clue for Thursday's exciting announcement.
I'm quite spellbound by this sweet little tune....


P.S. We had a really great guess, wondering if Esther would be starting her Make A Wish. That is such a great guess, but it's still several months off. The wish needs to be completed within 9 months of the beginning process, so we need to wait until she's healthy enough to actually make her wish. GREAT guess!


Sunday, March 24, 2013

Snow Day and Thursday is only FOUR days away!

Last week my dad, aunt and Grandpa got to come up for a little bit. My grandpa has been excited to give the kids their Christmas gifts. Since life was so crazy at Christmas time, everyone has been patient. We had a very nice time, and it was so wonderful to see them.

The weather even gave us a wintery ambiance to enjoy our Christmas gifts. Esther was SO excited to go out. She loves the snow and was out for probably four hours. The only reason she, Rourke, and Frannie came in is because the CSU game was starting...poor Rammies. Zinnia and Lydia didn't last long, they never do.

After several rounds of this game, the winter loving crew and Anthony headed up the hill and tried to sled, but the snow wasn't slippery enough. I was so proud of Esther walking all the way up the huge hill by our house. Anthony was such a trooper and stayed out with them the whole time.

They wanted to build a mountain as tall as Esther.

Anthony filled buckets up and the kids pressed the snow together.

Then they decided it would be a volcano and they dug tunnels through the mountain.

They went on to build another mountain with a tunnel big enough to craw through. I remember building those as a kid and being so terrified it would fall on me, but not terrified enough to stop going through. I also remember something like this as a kid...

My dad used to take us ice fishing, and I always thought it was so cool to put my drink in the snow next to my dad's. I loved Rourke's intuition to keep his water cold by stuffing it in the snow and the memories it brings to my mind. *happy sigh*

There have been some good guesses as to what really cool thing is coming in just FOUR more days.

  1. 100 days post transplant? That's a good, close guess, but Thursday is 99 days post transplant.
  2. I will announce my discovery for keeping rabbits out of my flowers and garden. I will call it "Mr. McGregor." No...but Peter, Flopsy, Mopsy, and Cottontail don't like garlic, so I sprinkle garlic powder on my bulbs as they come out of the ground. It helps, only a couple are coming up a bit chewed.
  3. The Grow With Me Sale load in day and preview party? Although, over the past four years that has been one of my favorite days after all of the planning and preparing that goes into getting ready. The Grow With Me Sale is a fundraiser for the Ft. Collins Parents of Multiples Club and Northern Colorado's biggest and best baby and kids consignment sale. Just because it's been a fun project of mine to help organized over the last four years, I don't think I'm biased, it's really great! The sale is Friday, March 29 and Saturday, March 30th at The Ranch in Loveland, CO. They have great goodie bags this year for the first 1500 shoppers...look for the Fine Edge Paintless Dent Repair coupon. Casey is my brother-in-law and does GREAT work!


Wednesday, March 20, 2013

Something's gonna happen

My ever generous grandparents built for me a childhood full of wonderful memories at a cabin they've shared with all of us. One memory I have is of this sign posted by the front door.

I fell for this tease many times. I just didn't believe it. I asked each of my grandparents what happened, my mom and dad, my aunts. Everyone just replied, "nothing," and then had a chuckle. As a stubborn teen I, teenagers are foolish. Now I enjoy chuckling at myself...really it was nothing.

However, I would like to change this sign up a bit because...

On this site, in 7 days, something really cool is going to happen.


One more thing...would you all please pray for Justin. He's a bit of a hero in the neuroblastoma world, facing his 5th relapse. He has scans today to see how far this most recent relapse has gone and if the radiation and low dose chemo he has been doing helped. He lives in Aurora, and I've met him and his mom a few times. He's a very sweet, kind cancer fighting ninja, and his mom is an inspirational, supportive woman.


Monday, March 18, 2013

Strangely Normal

The last week at home has been strangely normal. The first few days Esther was a bit overwhelmed. She was also feeling pretty crummy from the lingering effects of her antibody therapy. Esther is feeling much better now. Eating and playing and even throwing a fit or two.

We've all been figuring out what life looks like as we strive to return to our "normal" lives. I've been trying to be diligent with the kids' school, maintain the cleanly environment Esther needs, and to just simply enjoy my kids. Over the last few months we've catered to more preferences and desires than usual. So, there's been some adjustment relearning that mom is not a short order cook and it's just not okay to expect me to prepare three different kinds of fruit, serve 5 different kinds of cereal, oatmeal, scrambled, fried, and hard boiled eggs for breakfast. We've renewed the saying "you get what you get and don't throw a fit." Sorry thankful I'm makin' you some breakfast.

Really, though, the kids are doing very well. Enjoying each other tremendously. They've been working together, supporting each other. I am often in awe of the way Esther's cancer, and especially the last four months, have solidified their relationships. Cancer has provided a deep unity for these little hearts. This is a complete kindness from God. The kind that brings me to tears, not of sorrow, but of utter thankfulness and awe of a God who hears, who showers us with mercy.

While Esther is well enough to be home, life is not completely back to normal. Esther is still pretty vulnerable. She has to wear her mask any place outside of our home, including the back yard. It will be several months until she can weather a cold without risk of serious complications. We still need to be quite careful. I'm not sure that's fully understood. Esther was able to return home earlier than many children because she received her own stem cells and because she's done so well. We don't want to be antisocial and would love to see all the people we love, please don't be offended that we're standing with arms held out a bit.

A few moments from our week...

The first few days Esther was home, these two were inseperable. Esther wasn't feeling great, so Zinnia hung out in bed with her watching movies, looking at books, and just being sisters.


School time. It has been so nice to get back into a routine. I love being able to teach my children. While we homeschooled before Esther's cancer, it is more of a blessing now to treasure every moment with them.

Sunday night Frannie asked me, "Instead of reading tonight before bed, is it okay if I do these?" Bewildered, I responded the best I could, "Ummm. Uhhhh. Sure?"
The kids have been enjoying school as well and now have newfound motivation. Rourke is working on his reading and writing skills because he wants to work at Brent's Place. We told him he needed to be able to write grants and read lots of books about taking care of families with cancer. Lydia is working on her math facts because she needs to be able to dose medicine when she's a nurse at the "Children's Hospital." Frannie recently said she wanted to be a waitress but has changed her mind and wants to do Miss Bridget's job at Brent's Place. We told Frannie she raises money to help other families, so she's been more motivated to work on her math and reading "so I can write good letters to raise money and count the money." What's that you say...manipulation to work harder on certain areas of school...never.
We enjoyed some face time with Anthony's mom! She sent Christmas gifts for the kids...with all the craziness of being in the hospital and back and forth, the Christmas gifts weren't opened. They were stoked to finally get a chance to see Grandma Sherry and open their presents. Lydia got a bead set and was eager to share it with everyone. I like my new bracelets...I'm pretty sure I'm ahead of the fashion curve.


And there's this. I used to stand in the mirror and cry. Guess she takes after me.

Saturday, March 9, 2013

Mommy, My Eyes are Watery

Yesterday was very busy getting everything ready for Esther's anticipated homecoming. This was the most fun project of the day.

We weren't sure if Esther was going to be able to make it home, but we wanted to be prepared.
All four kiddos worked together to draw Belle, Esther's favorite Disney Princess. Rourke drew her head and crown, Frannie drew her dress, Lydia tackled the hair (including the bun), and Zinnia helped with the hair.
Each of the kids added their personal touches to the poster. This is Zinnia's drawing of super hero Daddy flying Esther home. His alter ego must be a bug....
Rourke drew a ton of sharks. There is a book called "Chemo Shark" that inspired him to make sure the cancer knows who's boss, "aaaaa..."
Late in the day Anthony let me know they were on their way. When they got close we called my sister and her kiddos. They only live a few houses away (HUGE blessing), so Robin got her kiddos out of bed and they ran down to our house just in time.

We haven't gotten around to taking the Christmas lights down, and I've felt a little silly. Last night the silliness was erased because it was GREAT to be able to add to Esther's arrival with twinkly lights.

When we saw the headlights come down the hill to our house the kids started running across our front yard toward the street. I was impressed they didn't tear the banner! They sort of looked like a school of fish, all moving together. They were jumping up and down, full of delighted squeals and shouts.

Zinnia ran right over to her sister. She kept saying over and over, "Mommy, she's so beautiful." Esther had been sleeping and was a bit disoriented.

In the end we got a smile out of her. It took a few "hics."


As we were tucking the kids into bed Frannie ran out to me and said, "Mommy, my eyes are watery. I think it's because I'm just so happy that Esther's home."

Me too, baby girl. Me too.

Thursday, March 7, 2013

Uhhh... How Many More Weeks of Immunotherapy are Left?

Today was another intense day of immunotherapy with Esther still battling stomach pain and holding fluids. But with her red blood count down to 7.4 this morning and the extra kilo of fluids in her system, she was able to get a blood transfusion around mid day. But as the chimeric antibody was started up again and we waited for the transfusion to take effect our nurse had to keep an eye on her lungs and breathing with all that extra fluid. By the evening, we gave her one drug to help her pee and she proceed to pee almost a whole liter in about 2 hrs, probably the most she's peed all week. You have to understand that her weight has been up to 15.2kg even though she came in at 14.3kg and she's barely eaten anything this week!

The antibody infusion should finish in the middle of the night tonight and then the pain and reaction meds will get drawn down heading into the morning. The one hang up we could have for her getting discharged is her O2 levels and her breathing. It's better this evening after peeing so much but it may not recover so quickly, we'll just have to see and maybe get a chest X-ray if she's not progressing. Pray that we can get home by tomorrow evening or we might be here through the weekend with all the snow that is expected tomorrow night through all day Saturday! Pray that her stomach recovers quickly as well. She probably needs to poop more again and it's been the main source of her pain all week between the antibodies and the pain meds.

Sam and I are both exhausted. Sam is even more exhausted than I am between caring for our older 4, packing up at Brent's Place, and then trying to get home to make sure things are ready for Esther (this all after doing a ton of cleaning at home last weekend!). I think I'm worn out by not sleeping well all week and the intensity of this treatment that I've tried to help Esther get through. Tomorrow night we could all be home for the first time since December 10th but I'm just trusting God to sustain us right now and that Esther recovers quickly from a brutal week of pain, grogginess, labored breathing, swelling, and simply a lot more than she likely anticipated.

The endurance God has given Esther still blows me away (though I'm learning she probably gets it from her mom!). Even at her worst she has been extremely trusting and compliant. I don't think I'd have her attitude with the constant pain she's been in all week and not even being able to understand it all. Esther has been very honest with how she's been feeling and hasn't smiled much but hasn't despaired or really grumbled.

Honestly, I'm not excited about the rest of this treatment over the next 4 months. I know it's powerfully effective. I know it gives Esther a significant edge in her fight again Neuroblastoma that kids even 5 years ago didn't have. I know the side effects should subside within a day or so once the week ends. But, man, this is worse than chemo transfusion or neutropenic weeks (though probably not worse than transplant...)!

I am very grateful though. We will soon be home. Esther will be running around our house with her siblings. I will see my wife more than just like passing ships. And our hope, as best we can, is in Jesus. Circumstances are all over the map and change daily and who knows what God has for us next. But He is good and unchanging and still sovereign. He has good for us, even if that means more immunotherapy for our little one.

For I know the plans I have for you, declares The Lord, plans for welfare and not for evil, to give you a future and a hope. (Jeremiah 29:11)