Sunday, August 25, 2013

This is not the downhill.

A friend of mine overcame breast cancer last year. She has this picture, standing in a beautiful wild, with a valley behind. I really like this picture. That range in the distance is similar, but not the same. The climate is pretty much the same, there will be some of the same vegetation, but it's not the same place. When you look in the distance, to the hills behind her, they are steep and once you step down, you're committed, down you go.

Isn't she beautiful?! Jen, we see your strength.
This is not the downhill. The steep slope of a diagnosis and treatment pulled us down, we really just stumbled and had no choice. I feel like we've been climbing up and slipping back down a rocky slope but with the determination of Dory, one foot in front of the other, get to the other side. We're almost there, but it's not the same. The other side of this valley is a strange.

We have so many there cheering us on. That's so great she's done. How exciting! You must be so excited! You made it! You get to have your life back to normal!

Yep, all true.

And now, can I be honest?

We're having a hard time celebrating. We are still beat up...exhausted, sore, disoriented, and bruised. The consequences of the real possibility that this cancer can return will linger through the months and years ahead. Reentering a life you used to live, in a different time and as a different person, is awkward and feels uncomfortable. Add to it that I am plagued by forgetfulness, it's harder than we thought.

As Esther's doctor said at her appointment last week, it is reasonable and expected to be scared. Treatment is coming to close, and now we just have to wait and pray and hope and trust. All of the faith of these last 15 months feels like a scrimmage, this is for real.

Esther is 12 doses into the last 28 doses of medicine to rid her body of this ugly, aggressive, deceitful thief. We have 8 more days of active treatment. 8 days left to clean up any residual disease. 8 days to the summit of this valley. Please do pray for us, hold us up. This climb has not left us without wounds and hurts, and it is hard right now. I wrote in an email last night...

"We are glad to be almost done with Esther's treatment, but are having a difficult time actually being excited. Esther now faces a significant chance of relapse in the next 5 years. So, we want to be hopeful and joyful, but the future is not certain. None of ours is. We we would all agree on that in a general way; however, when you know what you will face if "xyz" happens, it is different than what you could theoretically/imagine facing. Last week Esther's doctor said these feelings are very expected, that there is valid reason to be afraid. [He also said he feels good about Esther's long term survival.] I just appreciated the honesty and freedom to confess my feelings.

... Lyrics from the song, "Worn" by Tenth Avenue North say....

I know I need to lift my eyes up
But I'm too weak
Life just won’t let up
And I know that you can give me rest
So I cry out with all that I have left

I think I would feel this way just in the midst of regular life without ever walking this cancer road. I feel entitled to a break, to rest, but life just won't let up. I'm seeking my rest in places that aren't satisfying, and as much as I feel I deserve a break, it is a mercy and grace that doesn't belong to me. God only promises to be with us. It is true, life just won't let up. I am feeling that more acutely through some other difficult circumstances.

I know it's been a long time of need for all of us, and it's hard to keep asking, but please hang in there with us as we figure out how to get back into a life that has been lived for a year without us. I feel like the new person a lot. Spending time with people we've known before cancer is strange. It is clear we haven't been a part of their lives. Relationships between friends have grown and changed with each other, kids have grown and changed. We can't just go back to normal and I don't know how to start over as a completely changed person. I feel like I have to get to know everyone again. I suppose it's a bit like Anthony and I. Coming out of this, we are changed people, our soft spots are different, we need grace and to encourage each other in ways we didn't need before. We have to commit to relearning each other in meaningful ways, and I need to do that with the people around me."


This desire for rest will not be met entirely in this life. There will ALWAYS be hurt and pain in some degree. This morning at church we sung "You're Beautiful" by Phil Wickham. At one point in the song I just started weeping.

"Now You are sitting on Your Heavenly throne. Soon we will be coming home. You're beautiful."
"As we arrive on eternity's shore where death is just a memory and tears are no more."

There is a promise ahead. A promise of no more pain, no more weeping, no more death. A promise of perfect relationship with the One who loves us more than any ever could. Life will let up, and the rest I will never completely find in this life will be found. Soon we will be coming home. It was an encouraging morning of worship for me. Honest...I don't want this hurt...and real...I am so, so weak right now. Through one of the other songs, God reminded me of a passage that has long been a cornerstone of my personal faith, 2 Corinthians 12:8-10...

"Three times I pleaded with the Lord about this, that it should leave me. But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong."

It was refreshing to cry this morning and feels good to just confess that this is still really hard, and we are still incredibly needy.

Esther is doing pretty well. The skin on her face is showing breakdown from this final round of accutane. I am so glad we don't have to worry about her Broviac site anymore. She is feeling well and still showing everyone that her tubies are gone. Tuesday we are going swimming! She's going to be so excited. We're trying to soak up as much summer as possible and will be starting school Wednesday. Here's some pictures from the last couple of weeks.

The weather finally got warm enough to ripen some of our fruits and veggies!

Farm Hands
Getting ready to roast tomatillos, garlic, and peppers. SPICY!
Lydia halved all 10 pounds of tomatillos. Zinnia and Esther laid everything out to roast.
That would be 8 quarts of tomatillo sauce. Marinara sauce is next. YUMMMMM!!!!!

We had a dance party after lunch today and taught our kids about the awesomness that is old school Weezer.


Tuesday, August 13, 2013

You want to see my tubies?

Esther's recovery yesterday went something like this....

In that soft, motherly tone, "Hi sweetie, how are you feeling?"

"Mmmmmm," she answered through groggy lips.

"Your tubies are all gone."

"I want to see!" Then she sat up and tore her hospital gown off as quick as possible. "Look, mommy, see. they are all gone."

From that moment she has asked every person she has encountered if they want to see her tubies. And she's had the same sweet declaration, "See, all gone!" I knew she would be happy to have it gone, but the relief and desire to make sure everyone knows it's gone has struck me as a mark of her patience, endurance, and strength.

Her surgery was quick. Afterward her surgeon, who also removed her tumor (and whom we really like), said central line removals are her favorite surgeries to do. it makes sense, she gets to take lines out of kids who aren't sick anymore. It is so neat to see the collective celebration of these huge milestones. We've had the same recovery nurse a few times now she was also giddy to be taking care of a girl who knew she wanted a purple slushy.

We have an appointment next Monday to start her last round of accutane and to discuss the end of treatment/final scans. Wow...there were many times this felt completely unreachable, but it's right around the corner.

We had so much fun flying kites in the street today. I'm looking forward to many more days like this!


Saturday, August 10, 2013

It's Not You, It's Me.

Well, Rosie and Wilma, you have been a great broviac. Really. There's been so many good times...IV hydration, TPN, chemo, stem cells, chimeric, dilaudid, IL-2, blood draws, and many other medicines. It has been great to do all of these things without Esther having to be poked again and again. You've had such an important job...delivering many medicines that have helped to save Esther. Thank you for all of that.

At first the flushes, cap changes, dressing changes were okay. Not a big deal. It has been annoying to have to wrap Esther in press and seal for the last 9 months of baths, but we can cope. After all, no relationship is perfect, and it's important to learn to appreciate and overlook even the difficult parts of a partner.

However, the last couple of months, things have gone down hill. Esther's skin is just not healing and this relationship has turned into pure torture. We've tried, really, a good effort. Lots of time to open air, gobs of Neosporin and Bacitracin, different tape, gauze, about 5 different kinds of dressings, other ways to keep you clean, tiny bandaids. It's just not working out.

So, I need to let you know, Monday at 3:30 pm, you're going in for surgery. Esther will need some prayer to remain healthy because Lydia and Anthony have been sick, that might delay this break up. Really, though, thank you for all you've done, it has been an important relationship, but we're over. Don't worry, Esther will still have her port and that will work fine for the next couple months. It's just time to move on to things like healthy skin, baths with splashes and bare skin, and swimming pools.



Thursday, August 8, 2013

Wondering Why for a Different Reason

It's easy to wonder why Esther had to have cancer...what caused it, what could we have done differently, was it preventable? Why did Esther have to get cancer? Why does any child have to get cancer?

The last week I've been wondering a different why. Esther has done so well. Her treatment has been harsh, her lows have been low, but the cancer has died. Her surgery was far better than expected, she was disease free earlier than many kids, she has remained sweet. She has done well. She just completed her 5th round of antibody therapy.

Esther LOVES to ride her bike and is getting strong enough to do it!


She has been getting stronger and feeling better. She's had a significant amount of skin breakdown from the medicine she takes which has caused continued problems with her broviac site. Lots of tears and pain. We are leaving it mostly open in hopes it will soon heal, but after a quick trip to the clinic today, we decided we'd rather just have it take out. The constant itching and pain from needing to clean it all the time is more than she or I can take. The original goal was to remove both her broviac and port at the same time after her end of treatment scans to save a trip to the operating room, but at this point, it's just not worth it. A few specific things to pray...for no infection to develop before the line comes out, for an opening in the surgeon's schedule soon, and for Esther to remain healthy. Lydia has developed a cold which is okay now. The risk of Esther being sick now is might take her a long time to get over it, but it won't be life threatening. However, you can go under general anesthesia if you're sick, so that could delay the surgery.

Her final round of antibody therapy will be nothing for the next two weeks and then two weeks of oral meds at home. Then sometime in September, after 16 months of cancer fighting days, she will have end of treatment scans. Lord willing there will be no cancer and never again will she spend another day fighting cancer. The doctors are optimistic about her future and that is reassuring, but it's not a guarantee. The statistics of kids who relapse are staggering, more than half of kids with Esther's staging relapse.

A little girl we met at Brent's Place passed away last weekend. She finished her neuroblastoma treatment and had clean scans just a couple months ago, but the cancer came back quickly and horribly aggressive. As I've thought about her parents and brothers, I ache and just want to hold my own children so, so tight. Every moment with each of them is a gift I don't want to take for granted. Her story is different than Esther's and her treatment had many bumps. She didn't respond as quickly, but she was cancer free at the end. Please pray for her family. I haven't asked permission to share her story, so I don't want to post names. God knows, so please pray regardless.

The same day we learned about this little girl's passing, we saw an update on another young man, Justin, we've met along the way. He has been fighting neuroblastoma for seven years and had just learned that his cancer had returned for a sixth time. SIX TIMES! He told his mom he's ready to beat cancer for the 7th time. He is incredibly courageous and has been through so much. He has beaten this cancer over and over by the grace of God and research trials. He was diagnosed when he was three and is now ten. At this age, he is actively engaged in the decision making process. His mom wrote in an update on continuing with more trials

I know, I know, each day of the last almost 7 years have been borrowed time... Please don't get me wrong, I am very grateful for each and every day we have and I wouldn't change anything we have done because he wouldn't be here if we did. We have done this over and over again and managed to make each and every day count. But I am not ready to stop spending my days with him. I am not ready to give up, even though many people think I should. What are we doing to him, treatment after treatment, trail after trial...we are trying to save him, I don't know any different. We are trying to help other children not have to go through all of this. I am trying to spend every last borrowed day I have with him until he is 75.

I know this mom. I have hugged this mom. This young, brave, kind boy wants to keep fighting, but not just for himself. He wants to fight for other kids too. Here's a video of him from about a year ago.

Because of kids like Justin and doctors who won't give up on them, kids like Esther have a chance. And because of kids like our little friend who passed away last week, so much more research is needed. There's a big problem though, kids don't make pharmaceutical companies a lot of money and our government's funding for childhood cancer research is really, really sad. Here's an overall picture of the funding.

This is really not an exaggeration. There is no known cause for any childhood cancer (with the exception of genetic abnormalities).
One of the most respected, well managed places that raises money for kids with cancer is St. Baldrick's. My sister, Robin is organizing a fundraiser in September to send some dollars toward research for kids like Esther, Ali, Thomas, Taylor, Boden, Justin, Ozzy, Dillon, Isaiah, Abby, Kayla, and Collin. To raise money for the kids who will be diagnosed with cancer in the coming weeks and years.
At this point, Robin could still use a little help hosting the Shave-A-Thon and if you want to be a Shavee and shave your head to honor kids who didn't get the choice, raise some money, and create awareness for their lives, check this out... .
Over the last week I've found myself so grateful Esther has done so well. It's humbling because I don't know what makes her story different from our friend who died or from Justin's. God's kindness to carry Esther so tenderly through all of this is overwhelming to me and I wonder why does she, why do we, get to receive this gift and not a mommy who is heartbroken by a devastating loss? I want every child to get better.
We have sung loudly and clung tightly to the sovereignty of God through all of this. This is no different, but I think it's important to know. There are lots of places your time and money and efforts could go, but this is one that directly impacts Esther's life, the lives of kids like her, and the lives of the kids who will have cancer in the future. I never thought it would happen to us, but if I did, I'd want support the organizations that were fighting to give her a chance to get better. St. Baldrick's is just one of the really good ones. Over the next month, I plan to write about other ways to create awareness and support kids with cancer. So many of you already have just by sharing Esther's story. Thank you for laboring this journey with us.