Caring for Claire

On July 8, 2010, my daughter, Claire was diagnosed with Acute Lymphoblastic Leukemia. My husband and I took turns writing updates on a Caring Bridge blog to keep our friends and family informed. Although Claire just finished her 27 months of treatment, the blog still exists here. If you don't feel like reading 90+ posts on our life surrounding cancer treatment for a toddler, then here are a handful of posts to give you a little taste.

Diagnosis Day 
Written July 8, 2010 by Dustin

36 hours ago, Sally, Claire and I walked into a doctor's office with a pretty good idea that Claire needed some serious medical attention. She had been running a low-grade fever for nearly a month, and every time the fever broke, it would return again within a day or two. We had been to the same doctor 3 previous times for another related symptom. Claire has had swollen lymph nodes since March. The first time we went in, they were measured so they could be closely monitored, but with no other symptoms, they weren't too great a cause for concern for the doctors. Those of you that know Claire well and have spent time with her in the past 3 months probably realize many other symptoms as well, but the jury is still out on how to tell a disease symptom from a terrible-two's trend. Anyway, swollen lymph nodes in conjunction with the fever helped the doctors finally decide to order blood tests, a chest x-ray, and a urinalysis to determine what the problem might be. We left the doctors pleased to know that we might finally have some answers by that afternoon.

It wasn't the answer we were hoping for. As I was in my office working, Sally came down the hallway in tears and related to me her phone conversation with the doctor. "Her blood work came back very abnormal. We want you to go to the emergency room at Seattle Children's Hospital as soon as possible. I'm sorry, but we think your daughter has leukemia."

It took more than a minute to set in. Maybe more than a day. Then again, it might not set in till sometime next week or next month. 

I called friends in our church congregation and got in touch with our favorite neighbor Paul Tucker who agreed to come over and help me give Claire a priesthood blessing. I was almost too choked up to proceed, but I laid my hands on Claire's head and blessed her with understanding, with faith in Jesus Christ, and with the knowledge that he can heal her and that he will heal her. I blessed her that she could feel the love of her family and friends, and that angels would be there supporting her every step of the way. I'm so grateful for the priesthood and for a loving Father in heaven. That blessing has helped us remain very optimistic throughout the ups and downs that we've already experienced. After the blessing, we left for the hospital.

Another thing... we feel especially blessed to live only 3 miles from Seattle Children's Hospital, which is ranked as one of the top 10 hospitals in US News and World Report for pediatric cancer. When the nurses asked where we're from, they're shocked that we live in Wedgwood (our Seattle community), given that the majority of patients they treat for this issue have traveled hundreds of miles from Montana, Alaska, Oregon, Idaho, etc. When we arrived at the hospital, they were expecting us and brought us in to a room where we met several members of the oncology team. It took a few hours, an IV, withdrawn blood, and a good amount of snacks for Claire before we were admitted to the hospital. Besides the poking and prodding, she gets treated like a queen, and she loves it. "More pudding, please" and "i want chocolate milk" have become new catchphrases. 

All the while, new doctors kept popping in giving long explanations and telling us that we probably had a million questions and that they'd be happy to answer them. We didn't have as many as they thought, and I'm not sure we really ever made it past the word leukemia yesterday.

This afternoon, the attending physician for hematology and oncology sat with us in our room for about an hour and explained Claire's diagnosis. He had gotten the results back from the bone marrow biopsy and all the blood work, which confirmed the diagnosis of acute lymphocystic (or lymphoblastic) leukemia (ALL). In a way, it's the best of the worst. Leukemia is a very taxing and difficult disease. But ALL is the most treatable form with the highest success rates. About 85% of ALL patients that fit Claire's demographic make a full recovery with no relapses. That success is earned through 2 1/2 years of chemotherapy and close monitoring, although only the first 7 months or so will be extreme, with the final 2 years more focused on maintenance with only monthly visits to the clinic.

Claire will be in the hospital for at least a week, and will begin chemotherapy treatment tomorrow or Saturday. I'll use this journal to make updates on her situation, which will probably come frequently over the next month. Thank you all for your support and for caring for Claire. Sally and I have been brought to tears by the love that has already been shown for our family. Thank you, thank you, thank you. 

The Best Thing 
Written September 12, 2010 by Sally

As long as her counts are good enough, Claire will start her third phase of chemo tomorrow. We’re actually excited each time we start a new phase because that means we are one phase closer to finishing treatment completely. This portion of treatment will include a clinic visit every ten days where two very strong drugs are administered through her port. She probably won’t feel the best the day of and the day after, but the upside is that we won’t be giving her any oral chemo at home. We’re also hoping that she will be able to be out-and-about for the next eight weeks of this phase.

Because Claire was not on chemo for the past week and half, we’ve been having a lot of fun bathing the girls together. They’ve been splashing and playing and having a ball. Tonight, in their bath, I saw Claire’s first large bald spot. She’s already lost her eyebrows almost completely, but she’s been hanging onto quite a bit of her hair. I guess it’s just another reminder that the war continues to rage in Claire’s little body. She’ll definitely have battle scars to prove it!

With over 2 months of chemotherapy under our belts now, I’ve been reflecting a lot on how this all began. The Sunday before Claire was diagnosed with Leukemia Dustin and I fasted for her. We were already fairly certain that she had a serious illness although we hoped to have those fears dispelled. From that fast Dustin received the inspiration that whatever this was, we needed to trust Heavenly Father that this was the best thing for our family right now. 

Since the moment that Dustin shared this thought with me I’ve spent many hours in prayer and scripture study wondering how that could possibly be true. I have so many examples in my life of people who have had great adversity. They have remained strong in their belief in God. In their service. In their humility. However, they still experienced a great loss or great pain, and from my perspective I haven’t seen the great blessings they probably received or the growth they probably experienced.

Also, when the shock of the news actually settled into my being and I realized that we had been given this trial, I felt humbled to say the least. It really seemed impossible that Heavenly Father would entrust us with this magnitude of adversity. As I try to wrap my mind around how Claire’s disease has and will affect us as a family and me individually I don’t feel that my faith had been challenged, but I feel that I have much to learn about the atonement and about prayer and about the Savior. I have at times even felt some excitement concerning how this trial will refine us. Of who we will become because we will struggle with and then ultimately overcome this trial. Still, more often than not, I want to quit. It’s just not an option.

I don’t have all the answers yet. I feel that I will never have them, but a few weeks ago I had the impression that we will not become better than we are currently just because this is hard. We won’t transform into the man and woman of God that we were meant to be because we just let this happen to us without getting angry or without losing faith. We have to work at becoming these better people. We have to take this trial a step farther than a time-consuming and life-altering disease that Claire had as a child. In other words, this won’t be the best thing for our family unless we make it the best thing.

Honestly, that’s as far as I’ve gotten in sorting it out. But I know I’ve got work to do. I’m hoping that I’ll get a little refinement because this just happened, but I know that it doesn’t necessarily work that way. In the meantime, I have already learned much from all of you about mourning with those that mourn and comforting those who stand in need of comfort. You are all doing an incredible job in those categories, and we have felt your love and support - even from miles away in some cases. Thank you.

The Calm Before the Storm

Written November 9, 2011 by Sally

When we make a big deal out of starting a new phase, we better back it up with some news, right? :)

Before Claire’s appointment yesterday, Dustin gave her a blessing in which he blessed her with strength, courage, and understanding. Yesterday, she had exactly that. There were no tears at her appointment. She insisted on sitting in her own chair instead of on my lap. She talked with her doctors. She listened intently when we explained that she will be losing her hair soon (probably within two weeks now) and that she will now get to wear hats all of the time. She dutifully opened her mouth on her own for each dose of medicine. She helped push the syringes of medicine and such into her port. Claire's new life is now normal to her, which leads me to my next point. Claire was fine. I wasn't.

I thought I had emotionally prepared myself for the visit - for the next few weeks, really; however, when her doctor instructed me to listen carefully to potential and common side effects I almost lost it right there in the exam room! Side effects like red urine, nausea, excessive mood changes, extreme fatigue, sensitivity to touch and noise a.k.a. Avery, difficulty sleeping . . . I could go on. We have experienced many of these already, but as I stated before, the last 8 weeks had given me a false sense of normal. It now feels like Claire is getting sicker when we know this part of the treatment is necessary for her to actually get better. Really we’re almost there. Maintenance is within reach now. We should be there by mid-January. That doesn’t stop me from being a little bit afraid of today, though.

Yesterday, every normal, sweet Claire moment I had brought a lump to my throat as I wondered how far and few between they might be in the next two months. For instance, catching her sharing her graham crackers with Avery without encouragement. Hearing her sweetly say, “Hello, Little One. How are you today?” to Avery. Listening to her little voice sing “I Am A Child of God” while the whole family puts Avery to bed. Watching her make sure Avery has a blanket to sleep with. It seemed that we were blessed with many sweet moments yesterday, so I tucked them away in my memory for another day when things maybe aren’t so good. For now, things are good, and we’re one day closer to full health for Claire. 

Assault and Battery 
Written November 4, 2010 by Dustin

This is probably the last journal entry before Claire starts delayed intensification on Monday. I imagine that we'll write more frequently once we start this new phase of chemo since we'll be in the hospital much more often. When clinic days are 10 days apart like it has been for the past month and a half, we don't have a lot to report so we do our best to share some good stories on here. Fortunately, Claire has given us some good fodder for tonight's entry:

"I need Oxy!"
The mix of chemo drugs that Claire receives tends to constipate kids. Despite giving her a laxative every day, Claire still gets backed up occasionally (i know what you're thinking right now... constipation does not qualify as good fodder! Don't worry, it gets better). After a few days of constipation, she ends up going to the bathroom but it's pretty painful for her. This has happened enough times now that Claire hates to poop. She holds it as long as she can, then we see her dancing around and she starts to panic when she realizes she won't be able to stop herself.

Now when most 2 year olds are in pain, they want a band-aid and maybe some Tylenol. Claire is no exception to this rule, and we often find her with a box of band-aids that she sneaks from the closet to put all over herself and her stuffed animals. But Claire has endured a lot more pain than the average 2 year old, and Tylenol doesn't quite cut it. For the first month and a half of treatment, we gave her oxycodone at least 3 times a day. I asked the docs if there's no middle ground between tylenol and morphine-like opiates. Despite my lighthearted suggestions that we just let our two-year old smoke marijuana on a regular basis (imagine the photo ops!), the doctors said oxy was the way to go and that they'd rather manage the pain and cross the bridge of addiction if we get to it.

So just like Pavlov's puppy pals, Claire learned that every time she was hurting, she got another dose of oxy and then she felt better. She hasn't needed the oxy during this maintenance portion of treatment because the chemo doses have been smaller and more spread out. But, the one thing that Claire does think hurts is going to the bathroom. Any time she felt the urge to poop, Claire would cry out, "my tummy's hurting. I need oxy!". To her surprise, we wouldn't give it to her and we'd explain that she gets oxy to help when her legs and fingers hurt, not for her tummy. Claire is a pretty quick learner. Within a few days of our explanation to her, she had it figured out. We'd see her start dancing around knowing that we'd be changing a diaper soon, and then she shouted out "my legs are hurting! I need oxy!" She still attempts this tactic on a daily basis, thinking one of these days she just might fool us.

Assault and Battery
Claire avoids convention. She never plays with anything in the way that it was intended to be used. Like her trike. She always wants to bring it on walks, but she won't ride on it; she just wants to push it. She throws her baby dolls on the floor to clear room in the play stroller for "purple", her blanky and best friend. Additionally, Claire is most interested in the uninteresting things from the adult world surrounding her. One of those things is batteries. Anytime she sees a battery, she wants it bad enough to throw a fit over it. And she actually plays with them! She carries them all over the place, takes them to church or the store, and introduces them to purple and whatever stuffed animals she prefers at the time. With Avery putting everything she can get her hands on in her mouth, I recently switched out Claire's AA battery for a D battery, which she was initially upset about because the AA was green and the D is just a boring duracell. But I explained that it was better because it's bigger and Avery won't choke on it, and she was okay with that.

Claire and her D battery have been inseparable for about a week now. Today while Sally was doing her hair in the bathroom, Avery started screaming in pain. Sally rushed over to little Aves and saw Claire running from the scene of the crime. Instead of immediately punishing Claire for whatever she had done to her sister, Sally wisely chose to evoke a confession. So she started talking to Avery, "Avery, what happened? Why are you so sad?" Claire drew nearer to see how she could help and asked, "what happened to Avery?". Mommy followed up with, "Did something hit her?". Claire revealed the truth with her next question, "was it a battery?" Holding back laughter, mommy then asked, "Was Claire holding the battery when it hit Avery?" Claire nodded, "mm hmm". By that point, Sally couldn't even punish her, she thanked her for telling the truth, then they had a good little lesson that every child surely receives on why we don't smack people in the head with D batteries.

The 5% 
Written Nov 15, 2010 by Sally

Claire thought it was time to get up for good at 2:30 this morning. And that’s how our day began.I had decided that having Claire sleep next to my head pretty much the entire night the night before wasn’t that helpful for anybody, so we had a big conversation about staying in bed all night. You can tell how that worked out, right?

Well, as expected she woke up at 2:30, which was a long stretch for her anyway, and I comforted her and reminder her that she needed to stay in bed and that I wouldn't be coming back. She knew I wasn't bluffing but looked sad when I left so I told her to sing songs. She took this very seriously and belted out “I Am A Child of God” and the “ABC’s” for the next hour.

I timed it.

She doesn’t even sing that loudly when it’s light outside.

Finally there was a lull in her singing at about the 45 minute mark, so Dustin started to fall back asleep at which point the serenade continued. So, Dustin, being the amazing father and husband that he is, went into Claire’s room to sleep by her. I had only said that I wouldn’t be coming back. That didn’t mean Dad couldn’t go rescue her and everybody else! I could hear them talking when he went in, and she was wide awake and SO excited that Daddy had finally come to play. It took him awhile to settle her down to sleep. I am so excited to be saying good-bye to Dex tonight for the next week. Maybe we can all sleep a little more for a few days. Or, maybe we can all sleep for a few days. Then maybe we’ll really be ready to tackle another week of Dex. Seriously, I’m really starting to have a bad relationship with this drug.

Claire’s appointment today was “boring” according to the doctor we met with. This is a good thing. I don’t want to be one of their “exciting” appointments ever again if I can help it. The doctor was very surprised to see how much hair Claire is still sporting. Let’s hear it for the 5%! Then, the next nurse pulled the rug out from under me and said it isn’t likely that Claire will have much more than fuzz six weeks from now. Why can’t they all get on the same page? That’s what I want to know.

Chemo Roller Coaster 
Written November 28, 2010 by Sally

I recently received an email from a friend stating the following:  “I know basically how you are doing, thanks to your updates (on the blog).  I know you try to keep those positive, so although I'm grateful for the updates, I find myself thinking, ‘Now, how are you really doing?’”

Thanks for that, Celeste. That’s right, I named you. Now everyone knows who the friend was.

She does have a point, though. Dustin and I try to write updates when we are feeling more positive or when we feel like we have a better perspective than wallowing in self-pity can give. So, you haven’t heard from us in awhile, which gives you a good idea on what this week was like without my having to say it.

Claire’s counts were down to 206 at her Monday clinic visit. Her doctor said if she had had a fever to go with the cold she already had that she would have admitted her. She told me she wouldn’t be surprised to see us back in clinic before the week was over. She seemed to think our Thanksgiving plans with good friends were a little too optimistic for this stage in Claire’s treatment. Well, here’s to optimism. We had Thanksgiving at home, and we’re still home. Having said that, Claire is miserable. She is in a lot of pain from the chemo. She received her third and last dose of a new chemo on Monday when she was already starting to feel pretty awful. Claire was excited to see that she was receiving a bright red chemo on Monday, but the nurse informed me that the brighter the color the worse the chemo and that Claire shouldn’t be excited. The doctor also said they talk about this phase of the chemo as a roller coaster ride. Once you’re on, you don’t get off, even if you’re going down and it’s a bit scary. Claire was “going down” all week. Every morning she seemed to wake up looking and feeling worse. She’s had to be on pain medication around the clock which brings the daily dose of medicine up to around 11 again. Not fun for anyone. The bright spots were that she would still eat breakfast and potato chips and she actually sat at the table for Thanksgiving dinner and perked up having friends here. I think we may have hit the lowest of the lows yesterday, though, because Claire gave me a brief smile this morning and ate cereal for breakfast instead of just potato chips. Maybe we’re leveling off for the week.

Overall, we just keep telling ourselves that although interim maintenance was fun and relatively easy, we still had this delayed intensification phase hanging over heads. Now, we’re plowing through, and praying that Claire can stay on schedule without delays. Dustin’s mom is scheduled to arrive on Wednesday just in time for us to start the next 28 day phase next Monday if all goes well.

The Day We Shaved Claire’s Head 
Written December 3, 2010 by Sally

Dustin called me from the hospital Tuesday morning after spending a restless night in the hospital with Claire only to report that Claire’s hair was mostly gone in the back now so it was time for us to shave it off and that the doctors had referred us to the nutritionist because they thought it was time for Claire to have a feeding tube placed because she had lost more than 10% of her body weight.

I was alone. Avery was napping. I took the news from him standing up, but when I got off the phone I collapsed on the couch and then walked aimlessly around the house sobbing. I couldn’t focus. All I could think was that I felt that Claire’s carefree childhood had been stolen not only from her but from me.

I wanted it back. I didn’t want to shave her head. I wanted her long, silky hair back. I didn’t want her to have a feeding tube. I wanted her to eat olives and tomatoes and kidney beans and ice cream and M&M’s without cringing in distaste.

I don’t know how long I sobbed, but by the time I arrived at the hospital with Avery a few hours later I had prepared myself to be strong. We went right to work. I didn’t cry as I shaved the rest of Claire’s stringy, unkempt hair off of her head. Instead I saw Claire’s whole face framed by just a bit of hair and beautiful eyebrows, and she was gorgeous. Tears only came to my eyes when she reached up, touched her head, and said “I want my hair back.” But, she did not see them.

I realize that Claire’s three-year-old pictures coming up in April will not look like what I had in mind. She might have some hair growing back by then. She might not have a feeding tube. (We’re giving her at least two weeks to gain weight on her own before we have to decide.) But, I believe that by then she will be mostly pain-free. She will be going back to mostly normal activities like nursery and grocery store trips and afternoons at the park. I am grateful for that.

I ran across a blog entry I wrote at the beginning of October, but I never actually posted it. I’d like to share it now:

I have been feeling down these past few days. I thought it was because of the potty-training fiasco, but I recently read a quote from Robert L. Millet that stated the following, “We cannot always tell when we will be filled with the Spirit and when we will not. We may end the day on fire with the power of the Spirit, rejoicing in our blessings, grateful for the closeness we have felt to the Lord. When we arise a few short hours later, it would not be uncommon to feel as though we had lost something, to feel that the distance between us and Deity had increased dramatically."

He goes on to share quotes to support the fact that the Spirit comes and goes. It is sometimes through our actions that the Spirit leaves, but, as stated by Joseph F Smith, We will not “always receive the recognition and witness and presence of the Holy Ghost himself, or (we) may receive all these, and yet the Holy Ghost does not tarry with (us), but visits (us) from time to time.”

Lately, I have felt unmistakably when I am full of gratitude. I love that feeling. I can’t get enough of it. I had arrived at the conclusion that the feeling of gratitude was a gift from Heavenly Father because at times it fills my whole person with overwhelming peace and happiness; however, at other times, I can’t begin to feel grateful, and I’ve felt ashamed that I can’t think of my blessings. In reading the above quote from Robert L. Millet I’m inclined to think that the feeling of gratitude is actually the Spirit residing with me. And, when it is gone, it is my job to be grateful anyway. On my own. I also recognize that I have felt that gratitude most of the time since Claire was diagnosed, which also leads me to believe that the Spirit has been with me much more than my share these past few months.

The entry ends there, but I thought of it because I am feeling incredibly grateful tonight. Grateful that Claire is home in her own bed. Grateful that I have a wonderful mother-in-law who has spent so much of her time and energy serving us these past few months even when she isn’t here living with us. Grateful to all those who read our blog entries, cry with us, laugh with us, pray and fast for us, and comment even just to say “hi.” Grateful that Claire is just as beautiful without hair as she ever was with hair (and that’s saying a lot!). And, grateful that Claire has such a sweet, loving, sharing personality that shines through in spite of all the junk she has had to endure these past few months. But more than anything, I am grateful for my belief in Jesus Christ that gives me the perspective that all will be made right in the end. I don’t need to understand it right now. I just know that it is true.

Love to all. I am grateful for you tonight.

Eating Disorders and Feeding Tubes 
Written December 6, 2010 11:20 by Dustin

During Claire’s stay in the hospital last week, the docs would all stop by together every morning and go over all of Claire’s charts, progress, and plan with us. They use fancy words like “neutropenic” when describing Claire’s condition, most of which we’ve gotten used to. There was one, however, that caught us off guard. "Anorexic". Sure, Claire doesn’t eat much because the chemo makes everything taste bad, but that doesn’t make her anorexic, does it? Being parents of daughters in a media driven society surely requires a few chats about self-image and the dangers of anything resembling an eating disorder, but we imagined those talks were at least 10 years down the road.

Here are the facts: When Claire turned 2, she weighed 25 pounds. That was 8 months ago, and she now weighs 23.5 pounds. She eats up to a pancake or eggo for breakfast, but often only half of that, and will eat lunch about 3 days a week and dinner almost never. We try to get snacks in her as much as possible, and she guzzles whole milk as her personal nectar of life. While she was in interim maintenance, her eating habits were decent, but for the past month of delayed intensification, she cries, screams, and vehemently rejects any food we push her way. It’s as if a sandwich or a plate of pasta was as offensive as the grainy medicines that she nearly gags on every time we force them down.

For the past month we’ve been asking the docs if she needs a feeding tube, which they had told us that lots of children get while enduring chemotherapy. In fact, most of the teenagers even get them. Apparently, despite a full understanding of the importance of food to fuel the body and provide nutrition for the healing process, even older children and adolescents can’t force themselves to eat while enduring chemotherapy. The nutritionist at the hospital kept saying yes, but the docs were okay with waiting to see if her appetite would return as it did during interim maintenance. There are pros to the feeding tube, but there are definite cons as well. They can cause infection, need regular cleaning and maintenance, and worst of all for Claire, they just aren’t comfortable and take awhile to get used to. However, we decided yesterday that we had waited long enough. Knowing that Claire is getting the nutrients that her body needs is more important than her comfort, despite how tough it can be to live with an uncomfortable 2 year old.

While being held in Mommy’s arms during her hospital visit today, Claire had nurses insert a thin white tube up through her nose and down her esophagus to reach into her stomach. This was not a happy moment, and she still hasn’t given up hope that we can just take it out. All evening she was having us hold her and she’d have a little gag reflex from the tube, start crying, and beg us, “I don’t like it… take it out”. Some kids just rip it out themselves, although when we told Claire that only the nurses can take it out, she stopped asking us to do it as frequently.

Her counts weren’t good enough to start chemo today, but hopefully with the feeding tube and another week she’ll be ready next Monday. One of the benefits of the tube is that all of Claire’s at-home medicine can be administered through the tube instead of orally. Even though we’ve made it through the more medicine-heavy phases, this will be a welcome break for all of us.

We’ve been told that the second half of delayed intensification (starting next Monday) will wipe Claire’s counts out again, but this time it could also wipe out her red blood cell counts, so lots of the kids have to have transfusions and be admitted with infections and such. We’re praying to be able to stay home for Christmas and hoping that the feeding tube will help that happen.

Feeding Tubes Work! 
Written December 10, 2010 by Sally

By the time Claire and I arrived home from our clinic visit on Monday to have her feeding tube placed we were both exhausted in every sense of the word. The nurses placed her tube but didn’t start the actual feedings until Dustin and I were able to attend a short training so we would know how to manage all the details of keeping it clean, cold, and working.

My point is that Claire was going on almost two weeks of eating little more than a small breakfast each day. So, with absolutely no body fat, no hair, a feeding tube, and a port needle still in her chest, Monday night it looked like cancer was winning the battle for Claire’s life.

The good news is that less than four days later, with the aid of the feeding tube, Claire’s little body looks considerably more healthy with color in her cheeks and some fullness to her face. It is still a bit unnerving to allow Claire to eat popcorn for breakfast and marshmallows for a snack; however, she is getting all the nutrients and calories she needs through the tube, so it is a relief to eliminate fights over food. It has also been almost fun to give her medicine because we just ask her if she wants to have the medicine in her mouth or in her tube, and she responds with a giggle, “In my tubie!”  when she realizes how easy it is when we put it in her tube. In fact it is a lot easier to manage the tube than it was to get Claire to eat anything at all, so much so that Dustin is afraid that I’ll want us all to get feeding tubes so I can stop cooking for the rest of the family as well! (His words, not mine.)

So, with Dustin’s mom here doing all the dishes, cooking for those of us who eat, lots of babysitting, and everything else in between and Claire looking and feeling SO much better, life is a little easier here at our house. Claire doesn’t even seem to mind the tube. We know that we are really only getting Claire in a healthier state so that she can start another big round of chemo on Monday, but that doesn’t stop us from being relieved and grateful for the small break this week.

Monday through Friday next week Claire will be in clinic everyday to receive IV chemo. Tuesday will be our long day of over 6 hours. The following Monday through Thursday Claire will be in clinic again everyday for more chemo. After that she has two weeks scheduled with no chemo. During this time many children receive transfusions because counts drop so low, which could also mean hospitalization if Claire ends up with a fever, so we are preparing ourselves for the last leg of this marathon. If counts are good, Claire starts maintenance on January 10th.

We’re starting to feel like we can do this. Most of the time in my prayers I find myself saying “I can’t do this.” But, a few months ago, a twelve-year-old boy, whose circumstances have been trying to say the least, bore his testimony saying “When my situation is hard I’m going to pray and tell Heavenly Father ‘I can do this.’” That taught me a great lesson. Heavenly Father already knows we can do this through the empowering aspects of the atonement, and He wants us to learn that we can do it. Since hearing that boy’s testimony, I have made an effort to catch myself when I think I can’t do it and ask for help instead. And, today it feels like we can do this.

A Terrible Reminder 
Written March 22, 2011 by Sally

This week a terrible, heart-stopping moment happened in our ward (church congregation). A 3-month-old baby died. Dustin and I attended the funeral on Friday and sobbed along with the rest of those in attendance. I don’t wish to dwell on the event on this blog; however, it did call to mind a time when I called out in prayer to Heavenly Father pleading with Him to “not take Claire away from me.” This was probably two months before Claire was diagnosed with a very treatable Leukemia, but I didn’t know that yet. I just felt that something beyond my control threatened her life.

Many of you know the story of our journey to have Claire be a part of our family. We struggled with five years of infertility issues before we became pregnant with Claire. I can honestly say that my pregnancy with Claire and her first 20 months of life were pure bliss after that struggle. Friends laughed at me when I didn’t even mind throwing up for the first 16 weeks of pregnancy. At least it meant I was pregnant, right? I had previously been throwing up on fertility drugs, and it was much better to know that a baby was already cooking.

I was in awe of pregnancy and motherhood until things got hard around Claire’s 2nd birthday. Then my patience was challenged. Then I wondered what happened to my sweet little girl. But, in the midst of this struggle to accept my changing child, I prayed, and I plead that she might not be taken from me. I felt that I had worked too long and hard to have her here. I had wanted to be a mother so badly, and it felt too short at just 24 months. I remember begging, "I need to see 6-year-old Claire and 12-year-old Claire. You can't take her from me. Please don't take her from me." I hesitate to share the rebuke that I received because I want to emphasize that it was a rebuke for me personally. But, as clear as if Heavenly Father were speaking to me Himself, I felt the words, “I have not given you 6-year-old Claire or 12-year-old Claire. I have only given you today.” I sobbed. I thought this meant she was going to die.

Later, it meant that I was to enjoy . . . No, it meant that I was to savor every single moment that Claire was here with me. It meant that all I have is today. Right now. I have memories of yesterday and hopes for the future, but I only have today to hold her.

Then, after 6 months of watching Claire meet her challenges that became our challenges given her age, I started to take it for granted that Claire does this hard thing called Chemotherapy. That she sings through so much of it. That she has battle wounds and scars that aren’t easily brushed aside. And, I expected her to be an adult about it all. And, because she is only a child, things got hard again. And, I forgot to remember the moment that I have been given that is called ‘today.’ The things that cause me impatience these days are normal mother-child moments. Like, why after almost a year of not sucking her thumb, Claire is sucking her thumb again. How do we get her to stop? Like, the fact that ‘taking care of business’ is so traumatic for her and usually ends up in two days of whining until it finally takes care of itself. Also, the moment that Dustin or I take a stance about something (i.e. eating 3 bites of healthy food before having dessert, cleaning up toys before watching a movie, or getting dressed before we go to a friend’s house) a stubbornness that can only be hereditary rears its ugly head. Claire can hold out with the best of them. And, then things are hard instead of fun, and I forget to remember that I have Claire today: I’m still a mother because she was born.

I was reminded this week.

My Small Friend 
Written June 2, 2011 by Sally

Just when we think we might be home-free things take a turn. Claire caught a stomach bug, from me no less, and ended up in the emergency room on Memorial Day. We already had a chemo appointment scheduled for Tuesday, and surprisingly, her counts were already bouncing back so we went ahead with the chemo. The problem is that even though her ANC was good, Claire is not so good. She has had a difficult four days. It felt like we were kicking her while she was down by adding Dex to her already complaining body.

Before Claire started her string of bad days, I had a few bad days of my own. This is mostly due to the lack of sleep we’ve all had in the last month between Dex, traveling, and sickness. But, sometimes, when I have a bad day I feel like the kids are against me. Why can’t they just sleep all night? How hard is it really? I would do it every night if given the chance! :) So, with Claire getting so sick again, I am reminded of her behavior back in November when she was barely giving moans in response to our questions. This was when she was hospitalized and lost the last of her hair. And, then it is a reminder that our life is still very fragile. Even on Claire’s good days, she probably just feels okay, and on the other days when I feel like she is excessively whiny or when she won’t sleep at night, she probably feels like she has a mild flu. It’s amazing how cheerful and friendly she is when she is probably feeling anything but healthy.

I’ve had people say to me that they can’t even imagine what we’re going through or what Claire is going through, and I have to say, that even though I am Claire’s mother, I don’t often know what she’s going through, and I expect too much of her. She is an amazing little spirit and she is being made equal to the task; however I read a poem that describes what it feels like to me to be with Claire during this difficult time. It is by Carol Lynn Pearson:

Mother to Child

Look-

Your little fist

Fits mine

Like the pit

In a plum.

One day

And one size

These two hands will

Clasp companionably

Help me, child.

Forgive me

When I fail you.

I’m your mother

True

But in the end

Merely an older equal

Doing her faltering best

For a dear

Small friend.

I remember when Claire was born, I had a flash of insight of how humbling it must be to be born naked and screaming into this world to a  parent who may or may not be as progressed in an eternal nature as that small baby is. I remember specifically feeling that Claire was probably better than me and that all I could do was my best to help her remember who she already is. I know that she won't remember everything that she is currently going through, but I know that I am learning from her and from her response to pain and difficulty. I am grateful to be her mother.

Looking Back: One Year Ago Today 
Written July 7, 2011 by Sally

One year ago today I received the fateful phone call from Claire’s pediatrician. She gave me Claire’s pre-diagnosis of Leukemia. Earlier in the day, Dustin and I had taken Claire into her regular pediatrician for the fourth time with the same mounting concern: Claire’s lymph nodes were swollen, and she had been agitated and in obvious distress or pain for several months. Because recurring fevers had been added to the mix, our concerns were taken more seriously and all sorts of tests were ordered including a urinalysis. I remember trying to get Claire to pee into a ‘hat’ on the toilet when she had never previously used the toilet. Despite my growing fears that Claire would be seeing much more of hospitals I tried to remain calm and happy with her. She loved music and singing so we sang the “ABC’s” and “Twinkle Little Star” loudly from the handicapped stall while I tried to convince her to sit just a little longer. I thought that maybe the pee would just leak out if she sat there long enough. 45 minutes and no pee later I should have known this was a very good indication of how potty-training would go.

I’ve often replayed those moments in my mind: the moments directly before diagnosis. Like the day before diagnosis when I took the girls to Alki Beach with friends. It was sunny and warm and the promise of sweet summer memories hung in the air. I noticed Claire’s belly was protruding awkwardly from her swimsuit. Little did I know that it was because her kidney, spleen, and liver were drowning in lymphocytes causing her organs to swell against her abdomen. Then there was the morning Claire had her preliminary tests, one of which was a chest x-ray. The two technicians seemed to already sense the magnitude of our journey although we did not yet know. Their eyes just knew. I remember seeing sympathy and heaviness in their faces. The younger, male technician offered Claire as many kitty stickers as she wanted. Of course she took a fistful.

So many memories come rushing back. I’ve thought of them over and over again throughout the last year. These memories would especially haunt me during the first few months. I felt like I couldn’t recognize myself in the ‘before’memories. I would look at pictures of our little family before this devastating news entered our lives and I would wonder how they could possibly be happy. How could those smiling faces in the photos be the same people that were staring in shock as the masked and robed doctors said ‘Your daughter has Cancer’? Since then I’ve had similar thoughts when life has been difficult, but they are less frequent now. Now, instead of months of feeling like I am having an out-of-body experience, I feel that way for a few days at a time and then my life seems somewhat normal again. Granted, ‘normal’ right now is on a 28-day cycle. Intense chemo on day 1, 5 days of Dexamethasone the effects of which last through day 10 or 11, and then hoping for two good weeks that aren’t interrupted by colds or flus or low counts. As I was thinking of this the other day, a quote from President Gordon B. Hinckley came to my mind. This quote hung on my mom’s fridge for years, and I never particularly liked it, but it came to my mind and I knew it was for a reason:

"Life is just like an old time rail journey ... delays, sidetracks, smoke, dust, cinders, and jolts, interspersed only occasionally by beautiful vistas and thrilling bursts of speed. The trick is to thank the Lord for letting you have the ride."

It’s difficult for me to like or accept this idea because I want the ‘beautiful vistas’ and ‘thrills’ to outweigh the ‘delays, sidetracks, smoke, dust, cinders, and jolts’ not only in influence but also in number. But, if I have learned nothing else, I have learned to thoroughly enjoy the beautiful vistas I have been offered. I use the word ‘offered’ instead of ‘given’ on purpose. ‘Given’ suggests that we just ended up with something, like I was given brown hair. Offered indicates that we have to reach out and physically accept the gift: I was offered a great job. I think we need to treat our blessings like this sometimes and reach out to grab hold of the beautiful moments because they will see us through the less than beautiful delays and smoke and cinders that inevitably come.

I do thank the Lord for letting me have this ride. Even today I was hopeful that Dex was out of Claire’s system and that we could have a less intense day. And, while Dex does seem to have lost most of its effect, instead I had a perfectly healthy acting three-year-old pushing boundaries all day long. We had at least 20 discussions on obedience and saying I’m sorry. I’ll let you draw your own conclusions on that one. But, this is life. It is our life. Claire’s life. Claire is alive. She is alive despite a Cancer that 30 years ago would have been a death sentence. And, that is a thrilling burst of speed if there ever was one. I thank the Lord for letting us have the ride with Claire here with us.

To Sleep or Not To Sleep: That is the Question 
Written October 9, 2011 by Sally

I sang Claire to sleep tonight. I don’t do that very often anymore, and tonight while I sang, I ran my fingers through her hair, which is at least 2 inches long now. It felt poignant because I remembered last July when Dustin or I sang her to sleep every night because we were afraid to leave her. We both admitted to touching her hair unnecessarily because we knew it was going to fall out. It seemed like the ultimate sign of sickness that her hair would fall out. It made us emotional. And, now, not only does she have beautiful, curly, soft hair, but she is quite healthy. She is so healthy compared to the previous 18 months that I sometimes forget to report on the challenges we face in parenting a child being treated for Cancer. For example, sleep challenges. Like any parent we face sleep challenges, but as you will read, Claire’s challenges are a little different.

The sleep problems started before the diagnosis. Claire had been a champion sleeper since she was 3-months-old. All our other parent friends were jealous. Dustin’s mom and sister-in-law talked in secret about the fact that we didn’t even know what it was like to be real parents because Claire slept so well. (Don’t worry. I don’t hold it against you Aileen and DeeAnne.) The good sleep habits continued right up until we had newborn Avery in January of 2010. Probably about 6 weeks after Avery’s birth, Claire, who usually woke up at 7:00 AM, started crying out at 5:00 AM in complete distress. She would not be comforted. She would not go back to sleep. Because I was already working on sleepless nights with Avery, Dustin stepped up to the plate with Claire. Every morning at 5:00 AM, Dustin would get 22-month-old Claire out of her crib, get her a sippy cup full of milk, and sit on the couch watching the sun rise over the mountains and trees. Avery and I would come out at around 7:00 to find the two of them on the couch - Daddy in his bathrobe and Claire cuddled up on his lap with blankets piled all around. She found comfort in Daddy’s arms. We realize now that she was probably awakening from pain, but back then we tried to do what any parent would do – wean her back into sleeping until 7:00.

Fast forward to July 2010 – Claire is diagnosed with Leukemia. We spend a week of sleepless nights in the hospital. Dustin and I take turns staying with Claire in her hospital bed. We have different strategies of helping her go to sleep with varying success. Morphine seems to work best. Within 3 days, the steroid treatment begins. Dustin stays with her the first night after her first dose. The nurses neglect to mention that she might have a difficult time sleeping. Dustin calls me at 4:00 AM. He and Claire have yet to go to sleep. We switch shifts at 4:00 AM. Claire falls asleep around 6:30 in the morning and sleeps for a couple of hours. This is the jumping off point for 38 straight days on a very high dose of the medication we now affectionately call ‘Dex.’ This is the drug that causes insomnia. This is the drug that Claire currently takes for 5 days every 28 days and will continue taking until September 2012. Although Claire was the only one taking insomnia-inducing drugs in our house, she wasn’t the only one with insomnia. Between the disruptive sleep and the stress of a life-threatening illness in my life, I was diagnosed with insomnia at this time as well. I was so afraid that any sleep medication would leave me unable to care for my children at night that I refused to take it until January. From July through December I slept many short nights on the couch. This made for some very, very tired days. Between DeeAnne (Gangy) and my sister Cami staying in Claire’s room, we had some reprieve during the nights at home for those first few months. DeeAnne stayed a total of 8 weeks with us during Claire’s treatment (a round of applause please) and Cami stayed a total of 4 weeks. I know they didn’t get much sleep at night when they were here what with the 3:00 AM puzzle time and Claire pulling her feeding tube out in the middle of the night, etc. They did give us some much needed rest from the constant needs of a sick child and we will appreciate that service forever.

My point in revisiting the sleeplessness of our last year and a half is to illustrate how much better things are today. They are so much better that I have neglected to report to you some of the things we are enduring now. The things that are better: I no longer have insomnia. Well, I no longer have insomnia every night. Whereas, I couldn’t go to sleep at all without sleep medication in January, February, March, April, May, and June, I can now go to sleep with Melatonin – a natural sleep aid that our own body naturally produces. And, from July through December of last year, every time I was awakened, which was often, I couldn’t fall back asleep for at least 2 hours, now I can almost always go back to sleep quickly. I probably run into 2 or 3 insomia-like nights a month and they almost always line up with Claire’s week of Dex.

The effects of Dex are immediate in Claire’s case. We start giving her the pills Tuesday morning after her Monday morning appointments. Tuesday night, she wakes up at least 4 times to go to the bathroom. Times of waking up are pretty consistent – 10:00 PM, 11:30 – 12:00, 3:00 AM and 5:30AM. At each waking, especially the 3:00 AM waking, she has difficulty falling back asleep. If my child didn’t have Cancer, I would be a bit of a Nazi when it comes to sleep. I wouldn’t cater to any of her needs at night. I would lock her in her room if needs be (don’t judge me ). I value my sleep and I don’t like arguing about it with a three-year-old. But, my child IS being treated for Cancer so I have to change the rules. Some of the rules that have changed are:

1.     Claire doesn’t have to sleep in her bed all night. Claire has an almost-permanent bed beside my bed so she has somewhere to go when she just can’t sleep in her bed.

2.     Because of water retention and great thirst, Claire is allowed to sleep with a water bottle during the week of Dex. This leads us to rule (or lack there-of) number 3:

3.     If Claire says she has to go potty 6 times a night, then she has to go potty 6 times a night.

By day 3 of Dex, I have insomnia again, which is understandable since my body no longer knows if it is going to be allowed to sleep for more than 2 hours at a time. If it is allowed to sleep for longer than 2 hours, then it will most certainly be awakened shortly thereafter at which point it will be forced to stay awake for an hour and a half to two hours while Claire tries to settle down to go back to sleep. Let me explain: Once in her system, Dex causes indecision about what she wants. Really, the person on steroids doesn’t want anything, but they FEEL like they do. And it feels like an urgent need. And my beautiful 3-year-old Claire just wants her Mommy to fix it. She wants to feel good and lie down and go to sleep, but she can’t. So, Mommy and Claire have a conversation similar to the one below each morning at around 3:00 AM over the course of an hour and a half: 

Claire standing next to my bed: Mommy, I need to go potty!

Mommy, immediately awake: Okay.

I slump down the hallway, tripping over toys and Claire’s purple blanket. I’m trying desperately to stay a little bit asleep so that it will be easier to fall back asleep when I finally get to lie back down again. We take care of business. I sometimes try to put Claire back in her bed but most times I just lead her back to my room and tuck her into the bed next to my bed.

Claire: I need another blanket.

Mommy: There’s one right here. (I always keep an extra one there because she always needs another one.)

Silence

Claire standing again: I need to go potty!

Mommy: No you don’t. We just went. Lay down.

Claire lays down.

Claire standing again: I want to sleep with you, Mom.

(Again, don’t judge me. Besides the fact that it’s hard to sleep with children in your bed, it really comes down to the fact that I can’t sleep at all when children are in the bed because as previously mentioned, I have insomnia.)

Mommy sitting up a little, talking firmly: Claire, lay down right here and go to sleep or you’ll have to sleep in your own bed.

As I say this I realize that I have ZERO control and that if I do in fact follow-up on this threat that I have no way of actually enforcing it. Thankfully she lays down and is quiet for 10 minutes. Then we start over.

This level of intensity lasts for about 6 days. By the 6th or 7th night, Claire is so tired that she actually finally sleeps really well. I, on the other hand, have been thrust back into the land of insomnia and I have two very bad nights in a row. We struggle for an additional 4 – 6 days while Dex completely leaves her system. Then we finally have the chance to be more firm, disallow the water bottle to bed, walk her back to her own bed when she wakes up, etc.

We do this next phase for two weeks. On the last two days of the two weeks Claire sleeps through the night in her own bed. I am on cloud nine! Hallelujah! And then, I look at the calendar. Tomorrow we go to the clinic for her chemo injection and to pick up her prescription for Dex, which will start the following day.

One of the reasons I share this post is because recently I asked two friends who have three-year-olds how many times their children wake up to go potty in the middle of the night. When they both tilted their heads in confusion and answered, “None” I realized that I have not been sharing on this blog the effects of cancer on our family.

This is one of the effects: I don’t get very much sleep.

On the other hand, we have completed 15 months of Claire’s treatment. We’re more than halfway through! We still have a proposed finish date of September 2012 which means we have 11 months to go! Then I’ll finally be able to sleep.

Claire's Home and Recovered 
Written November 6, 2011 by Sally

Dustin and I snuck Claire away from the hospital in the middle of the night Friday night. Just kidding. We made sure she was allowed to go, but we really did take her home in the middle of the night instead of waiting until morning. We wanted our little girl home that bad. We're so thankful that Claire is home and fully recovered from her low counts and fever. Thanks for all your prayers. For right now, we're all pretty tired, so we'll post a little report on the hospital stay in a couple of days.

Enough 

Written January 15, 2012 by Sally

Happy New Year! I’ve always loved a new year, a fresh start. I like the idea of what I can become and what exciting things will happen. This year, I am looking forward to many exciting things – one is our move to Colorado Springs this summer. Dustin will start his job as an assistant professor at University of Colorado at Colorado Springs in August. This means so many things to us, but it is really the closing of one era of our lives and the opening of another. We have lived in Seattle for almost 5 years. We have been in graduate school this whole time. Colorado Springs is the perfect fit for this next phase of our lives, but we will be sad to leave Seattle. It has been a wonderful home for us. In this job offer, we have been reminded once again that the Lord is involved in the intricate details of our lives. After Dustin was offered the job, we did more research on the Children’s Hospital in Denver. We knew it was ranked in the top ten and we were thrilled that Claire’s treatment would continue on at such a wonderful place. Upon further research, we found that not only is Denver’s Children’s Hospital amazing, but their Leukemia and blood disorders division is in Colorado Springs. Can you believe it? A modern-day miracle gift-wrapped just for us.  

Another thing that I’m really looking forward to this year is the end of Claire’s treatment in September. I find myself dizzy with excitement when I think about it. No more meds. No more doctor’s visits and pokes. Claire’s port will be gone. Fevers won’t be the cause for hospital visits. We’ll meet a little girl who quite possibly has more energy and different likes and dislikes from the Claire we know now. I don’t think this is to say that we’ll rest easy. I think those days are gone, but I cannot begin to describe to you how much I’m looking forward to September. Having said that, I recently felt that I shouldn’t place so much stock in September and the end of treatment date. Not in an ominous ‘relapse’ kind of way, but in an “I’ll be happy when” kind of way. I feel like I need to find the happiness in the moments I have now. I’m working on that one. We do have good moments and days, but we’re all getting tired. This is why I want to start a count-down until September – you know, 9 more months and then we’ll be done with the steroids, mood swings, pain from chemo, etc. But this is the exact thing I feel like I shouldn’t do. Claire had her chemo on Monday and was on Dex this week, and she did a great job. We started a responsibility chart with various chores and behaviors listed. When she does one of the things on the chart she earns a smiley face. That has helped her and us tremendously. We found lots of goodness in this week, and I feel like that should be enough.

I guess it’s like Melody Beattie said, “Gratitude unlocks the fullness of life. It turns what we have into enough, and more. It turns denial into acceptance, chaos to order, confusion to clarity. It can turn a meal into a feast, a house into a home, a stranger into a friend. Gratitude makes sense of our past, brings peace for today and creates a vision for tomorrow.” I found this quote when I was preparing a talk on gratitude, and I especially liked the idea that gratitude turns what we have into enough. I believe this to be true. I feel that gratitude has filled in all the gaps I’ve felt from the lack of sleep or Claire’s pain or my pain or whatever. It has filled in the gaps to overflowing at times so that what I have is enough, even more than enough.

And that’s enough for now.

Tainted Nostalgia 
Written May 1, 2012 by Sally

Avery joined us yesterday for Claire’s monthly doctor’s visit. My two girls sat together on the exam table drinking chocolate milk and discussing stickers. Avery was thrilled to be there. She loves Claire so much. She wants to be like her in every way possible. When Claire asks Avery to pick up all her toys, Avery says, “Sure, Claire.” She then proceeds to pick them up. If Claire asks Avery to go get a necklace from her room, Avery answers, “Okay, Claire.” She then trots off to retrieve the important jewels. And, when Claire asks for Avery’s last bite of cookie, Avery gives it to her and then asks me for more. She and Claire play wonderfully all morning long unless Claire is not feeling well, then Avery misses her sister and acts out and bothers Claire.

Avery is the same age that Claire was when Claire was diagnosed with cancer. Two years, 3 months, and one week old. When Claire’s doctor, Dr. Abikoff, saw Avery sitting beside Claire on the exam table, she did a double-take. “It’s like looking in a mirror from the past!” She was referring to how similar Avery looks to the Claire she remembers on diagnosis day. I doubt all doctors remember the patients they diagnose, but we are a little more special to Dr. Abikoff. This is because Claire was her very first patient. She had just arrived at Seattle Children’s to begin a 3-year fellowship. It must have been an emotional and professional whirlwind for her that day, and seeing our tear-streaked faces masked in shock probably didn’t make it easier. I don’t remember her saying much. I think the attending physician did most of the talking, but I do remember her being there.

Lately, I have been feeling the uncertainty of the future. We are moving in two months, and like many of you, I know how much can change in such a short time. Dustin and I have been digging through pictures from the past for Claire’s Movie Celebration up in June, and it has made us both very emotional. Seeing Claire’s bald head, or her chubby face from Dex, or her stringy hair before it actually fell out is somehow overwhelming even now. We even watched a couple of videos from those early months, and I actually couldn’t finish watching the two minute clips. With Avery the same age that Claire was then, watching Avery play throughout the day reminds me so much of that time around Claire’s diagnosis. I can’t stop holding Avery and then holding Claire and then Avery again. I can’t believe how much we expected of Claire now that I have a healthy two-year-old who has not had to meet any such expectations. I love these girls so much. I am in awe that I get to be their mother and pray to God that I will enjoy thousands upon thousands of days more of being their mother.

The First Day of the Rest of Your Life

Written September 24, 2012 by Sally

The first day post-chemo dawned gray and cool. When Claire’s brown eyes peeked up over the edge of my bed, I popped up quickly.

“Claire!” I beamed.

She grinned at the enthusiastic greeting. As you can probably guess, she isn’t always so happily met in the wee hours of the morning.

“Mommy! I want breakfast!”

“Claire! Welcome to the first day of the rest of you life!” I exclaimed dramatically. This was our first day without chemo in over two years. I felt we should acknowledge it, and her, with flourish.

If she were a teenager, she would have eye-rolled right about then, but since she’s not, she only looked at me quizzically and repeated her previous request.

“Breakfast!”

So, we went downstairs and ate Cheerios together. Just like we did the day before. And, just like we will tomorrow until her Cheerios fetish is over and she wants something else for breakfast every. single. day.

Because Claire is 4. And that’s what 4-year-olds do.

A couple of weeks ago, at Claire’s final chemotherapy exam, her doctor performed a few routine exercises to test her ankle and hand strength. Claire didn’t want to do it, so we reminded her that the nurse was preparing a surprise for her and she needed to do what the doctor asked. This was enough to convince Claire to follow the simple requests. Afterward, the staff brought in a pink cake, a purple pony, and her final beads of courage for her necklace. They sang “Happy off-therapy to you!” We all grinned and I cried. Claire loved it. Later, at home, we sang the catchy song again, and ate chocolate cake while Claire ate the pink frosting. Dustin congratulated her on finishing all her medicine. He then asked her:

“Do you know why the doctor gave you this yummy cake?”

She eyed the frosting on Dustin’s plate, “Daddy, can I have your frosting?” Dustin scraped the shortening-infused frosting off his piece of cake and plopped it onto Claire’s plate.

“Why did you get this cake?” Dustin prodded. 

Claire collected her thoughts slowly, then, finally remembering, she answered proudly, “Because I did what the doctor said! Can I have more frosting?”

While it is true that Claire did what the doctor said, both at that last visit, and hundreds of other times throughout treatment, clearly, she earned the cake for a more significant reason than walking around on her tiptoes and heels. Her triumph over cancer is much more than she can possibly know. We have several new friends who recognize the victory. They wanted to celebrate our huge milestone and threw a movie night in Claire’s behalf. Their words of congratulations, given in a butterfly card, compelled me to humility and the tears flowed easily.

One wonderful family wrote to Claire, “You’re a brave and beautiful girl and we love you.”

Another wrote, “You are an amazing girl with so much strength and courage – YOU BEAT CANCER! Wahoo!”

An 8-year-old neighbor girl whom we adore wrote: “I hope you never have to do that again!”

And finally, “Dear Claire, What a huge day for you! You kicked cancer to the curb. You have a beautiful, full life ahead of you and we are so lucky to get to be a little part of it.”

While preparing a talk on trials recently, I kept thinking of the becoming process or the ‘refiner’s fire’ that we so often talk about. I asked myself the question: how can we become the brilliant version of ourselves waiting on the other side of mountain-like difficulties? I’m still pondering the answer to that question as our family exits this particular challenge. I feel like I’m trying to shift gears from little more than first to the fast-paced, frantic fifth gear that you have all been driving for years now. I’m at a loss. I don’t know how to do it. I don’t know how to savor each good moment while at the same time keeping my house clean, teaching Claire her letters, dressing the girls appropriately, and coaxing them out of the house.

I will learn.

I do believe that I personally have changed in ways that I never had the imagination to consider or even desire. I hope that I am a far cry from the 20-year-old, stubborn, self-centered, prideful girl who married Dustin ten years ago, but it is harder to see what has taken place in only two years. Nevertheless, I feel that it has happened, and I’m grateful for it. Even so, I am probably much like Claire in that I don’t really understand what has happened to us. I know it was hard. I know I don’t want to do it again. And, I’ll gladly celebrate the end of it with cake and a movie night.

So, today, on the first day of the rest of our lives, I look to the future with a little more compassion for others and for myself. I know many of you are still entrenched in difficult circumstances or are just embarking upon what may be the most trying experiences of your lives. I feel that pain. I also have some anticipation for the learning you will do and the people you will become. I would love to encourage you onward and upward as I have also been cheered on and supported. Our experiences over the last 27 months have been priceless. We have been on sacred ground countless times and with very special people. I value it. I treasure the closeness I have felt to the Lord and the love I have felt from Him through you. I wish you all peace and comfort in your own sacred, private sufferings. I wish for you to know that God loves you and the darkness you feel is real, but so is the light. Embrace the light wherever you can find it. Look for it, and it will find you.

I know I’ll have other trials. Some I’ll share freely and others will remain mine alone, but I invite you to share in the journey at my new blog, Let it Rain Lemonade. I’m sure Claire, Avery, and even Dustin will make appearances from time-to-time, and I would love to hear from you as well.

Thank you is not enough to express what you have all meant to us. Thank you. We love you. Good-bye for now.