Done With Chemotherapy

Wendy is done with chemo. Done with chemo. Done with cancer.

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Tomorrow she goes in for an EKG, CT scan, bone scan and x-rays. She will have these scans every three months for the next year, every six months the next year, then every year after that for the rest of her life.

Did I say she was done with cancer? Well, done with treatment.

A few months ago I was looking forward to this season being over; to chemo being done; to Wendy being strong and well; to returning to a “normal” life. But then my mind moved to the scans…to the next step after chemo. Scans every three months…  My heart wrestled with the meaning of those words. Scans every three months for a year.

I had been so eagerly looking forward to the end of chemo. Looking forward to April, when treatments are over and we will walk through a different door, close that door and leave this challenge behind us. But as I thought about those words – “scans every three months” – it hit me that cancer and all that Wendy has experienced isn’t something we just leave behind us.

The cancer could come back.

I had to say the words with difficulty and out loud to Chris. I needed to say it to prepare myself for the possibility. I am not expecting doom. Yes, cancer could return and I need to be prepared for that possiblity or maybe we just have this experience and need to use it to help others going through it. But whatever it looks like, cancer is not something we will just walk away from.

How do I pray for Wendy…for all of my children?

Do I pray that cancer and side effects of chemo will not linger? Yes…but I have been praying that for many children I have gotten to know since September…and some of those children have died.

Did God not listen?

Did God not care about the suffering of those children or their parents and siblings?

What is it I am praying for in my children?

To pray that they will not be taken from me seems selfish. It is about my pain.

To pray that they will not experience sickness and pain – as difficult as those are, those experiences are inevitable and shape us – can shape us into great people.

I do pray the cancer is gone, never to return. But other parents prayed the same thing on the 9th floor of Children’s. During our hospital stays I would walk the floor, look at the names of the children behind the doors and pray for each of them. On one of our visits , the day after I did my normal prayer walk, one of the little girls died.

Was my prayer heard?

Yes, God heard my prayer. God is bigger than death.

So how do I pray?

I pray my children will each have a powerful purpose-filled life and will be filled with joy. I know with God this can be accomplished across a life span of 9 hours or 90 years.

So I walk through this life holding my children up with open hands. This can hurt, this is hard. These pains challenge and hurt my heart. They stretch my heart. I can let my stretched heart droop and drag my life down or I can circle it around more people.

Scans every three months means that we will not just walk away from cancer. But it does not mean I have to fear.

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Scans every three months, then every six months, then every year means that we will always have connections with other families going through this difficult time. It means watching Wendy grow into womanhood, reaching out and caring for others in ways most kids will never understand. It means we can praise God through every scan. It means we can always be reminded to trust in our Heavenly Father who has great plans and purpose for us and who fills our lives with joy.

Chris here. Julie wrote out the post above in her diary and asked me to type it for her…since her left arm is currently broken. I want to take a moment to emphasize some of the thoughts she shared above that impacted me as I typed. God heard my prayers for Victor. But Victor died. God heard my prayers for Johnny. But Johnny died. God heard my prayers for Ameera. God saw Wendy take her balloons. God knew she was in isolation in her hospital room for 9 months, even on her birthday. God knew when they took her to the PICU. God was there when she hosted a nail salon. And God knows what happened to her next, we do not. But we are pretty sure.

So what happened? What happened to the infant who was born with a bad heart whose grandfather I met on the elevator? What happened to the infant who could not take a breath without assistance after we prayed with his parents next to the parking garage elevator?

I don’t know.

I will probably never know.

Julie and I tend to write about our “feels”. It feels like God didn’t answer our prayer. And that hurts.

It hurts a lot. It hurts to meet these children. To see them bored in a hospital bed for weeks at a time, receiving treatment that knocks down their immune systems, being hospitalized because of their weakened immune systems and recovering just in time for more treatment. It hurts to listen to the stories of desperate parents. Parents who have been told that their child’s brain tumor is terminal.

It hurts.

But as for me and my house, we will serve the Lord. Great is the Lord and greatly to be praised! Bless the Lord, O my soul! “For I know the plans I have for you”, says the lord, “plans to prosper you and not to harm you. Plans to give you hope and a future.” How do I reconcile my belief in future prosperity provided by God when I watch a 9 year old child die?

Do I simply say “Thank God” when my 9 year old is spared?

That does not feel right.

Do I thank God or don’t I?

Is the Lord Great or isn’t He?

I was entirely blind to pediatric oncology before Wendy was diagnosed. It’s not that I didn’t care. It’s that I had no idea. And now that I have seen…now that I have experienced…now that I have felt it, I know I have a new purpose.

We will continue to serve families in need. We will continue to pray. We will continue to comfort. We will continue to listen and share. Because that’s where God put us. That’s what God called us to do.

But what God did not call me to do is to question him on why one person lives and another person dies. God did not call me to audit His answers to my prayers. Jesus summarized our purpose on Earth simply. Love God and serve people.

I feel the loss of friends. And that is a big feel. But I have faith and hope in an eternity that surpasses the loss. One day my faith and hope will be gone and I will be left only with love.

It is not about the feels. It is about love.

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Pediatric Oncology Homeschool

Wendy completed her chemotherapy treatment last week.

That is a wonderful and heavy and tremendous statement. One filled with more emotions, story and consequences than I am ready to write about yet.

So let’s talk about being home after chemo is done. It has been a week of mixed emotions, feeling relief that we are done with chemo but guilt that we are so behind in other aspects of life.

We got home from the hospital on Monday. Even though I had a cast on my arm (Only 3 days before Wendy’s last hospital stay I was standing on the couch to fix a curtain rod, fell and broke my arm) I was anxious to get started resuming a regular life and kicked school into gear on Tuesday. Our homeschooling the past 9 months has been more life experience than academic. I have called it our pediatric oncology homeschool. On Wednesday I presented them with new science curriculum, stressing to my oldest the need to rush through this curriculum, finish in the early fall to catch up on his freshman year while at the same time introducing my 13 year old to high school.

It did not go over well.

Did I mention I am also mending from a broken arm?

This week I have been talking with the kids about their experiences over the past 9 months. I asked them what they feel they learned through this experience. I wasn’t wanting them to talk about academics but their answers were orientated that way.

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All I know is that I have to get school done before I can play video games, that is my motivation.

While you were in the hospital with Wendy, I would do history the first day, out of guilt, then no more.

Ouch! While those are honest comments we can expect any kid to say, the comments added to the “mom guilt” I had been feeling throughout my youngest’s treatments. I have failed as a homeschooling parent. While focusing on my youngest I have neglected my 3 other children.

As a parent of a child with cancer there are many forms of guilt we feel. Jessica, another cancer mom writes about her daughter’s cancer and reflects on guilt in this post. I feel that I am in the same place she is writing from. But today I’m am writing about the pull we feel between taking care of all of our children.

On a good day at the hospital Chris would bring the other kids so we could all spend the day together. But at the end of the day I would kiss them goodbye, stand in the doorway of Wendy’s hospital room and watch them walk down the hall. They are all old enough to understand what is going on and they don’t cry when I am not there to tuck them in at night.

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On a bad day, a grandma would spend the night with Wendy at the hospital so I could go home, spend time with the other kids and sleep in my own bed. Before I would leave Wendy often expressed anger and sadness that I was leaving. She usually was fine after I left. She can depend on her grandparents to take care of her. But it was still very difficult for me.

Now the long hospital stays are over, but last week it hit me how far behind we are in school and caused me to feel I have neglected the kids’ educations. The same day I was dealing with this “cancer mom guilt” a fellow cancer mom on FB shared an article about PTSD in families dealing with pediatric cancer.

Some of the symptoms of PTSD discussed in this article are:

 • Re-experiencing the cancer treatment in nightmares, intrusive thoughts or flashbacks–scenes that are often reported to be much like full sensory movies playing unbidden in one’s mind.
• Avoiding places, people and reminders of the cancer experience including shutting down sharing with others what one has been through.
• Negative changes in beliefs and feelings including feelings of guilt, fear, shame or losing interest in previously enjoyed activities and feeling alienated from others.
• Bodily hyper-arousal experienced as agitation, inability to fall or stay asleep, being easily startled, irritable, having difficulty concentrating and so on.

I do not feel that any of us are experiencing PTSD but the article was a reminder to me that we have all been through something traumatic the past 9 months and it will continue to effect us emotionally. Normal is not going to return the week Wendy rings her bell. The truth is our lives will not return to what it was before. We still have emotions to work through and we have to be patient with each other. I can not compare my kids to other kids their age.

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Yes, my kids are doing school at a different pace then other kids their age. That’s okay. My oldest’s high school years are going to look different than most kid’s. That’s okay, in fact that is something we have always wanted anyway.

It is normal for adolescent children to find it a challenge to answer introspective questions like, “How have you grown as a person through your sister’s cancer treatment?” While they may have trouble expressing the challenges and person growth of the past 9 months I can see where they have grown.

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My three older children have had to take on a greater portion of the farm and household chores. While at times they may have felt dumped on and overwhelmed I see a greater sense of responsibility in them. From setting up fence for cattle, collecting eggs, doing laundry and making meals, my children have a good grasp on how to keep this farm and household running.

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Beyond the academics and work load responsibility they have learned an even greater lesson of supporting someone they love through a difficult time. They have had to learn about focusing on others and that we have to sacrifice to be there for them. This time has brought the four of them together in ways which will they will never forget.

Ecclesiastes 4:9-13 speaks to the value of community and friendship. It has been beautiful to watch my children live these verses out for Wendy and  for each other.

Two are better than one,
    because they have a good return for their labor:

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10 If either of them falls down,
    one can help the other up.
But pity anyone who falls
    and has no one to help them up.

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11 Also, if two lie down together, they will keep warm.
    But how can one keep warm alone?

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12 Though one may be overpowered,
    two can defend themselves.
A cord of three strands is not quickly broken.

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The greatest achievement of our pediatric oncology homeschool has been how my kids have grown in who they are and how they have grown together. My kids have worked together. Whether it has been watering livestock or building a lego set, I love seeing them accomplish tasks together. They have lifted Wendy up and kept her warm. Both physically, when she was tired and cold, and by encouraging her heart when she was discouraged.

Our 2015-2016 school year was 9th, 8th, 5th and 3rd grade for our children. It ended up looking completely different than I had planned back in August, but it has been rich, full and valuable.

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My Daughter’s Bald Head

I am sure that every child with cancer deals with losing their hair differently. Wendy lost her hair with a little bit of humor and grace. As her mother I was feeling several things as I watched her lose her hair, but when it was gone I fell in love with her bald head.

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Most of her hair fell out in a matter of days, about a week and a half after her first chemo treatment. That morning she noticed quite a lot of hair on her pillow when she woke up. Then through out the day as she ran her fingers through her thick hair more and more would just come out.

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She saved these strands, collected them into a little ball and said it was her own Tribble and named it Fizzgig. She feed it throughout the day, with more of her hair and Fizzgig grew. That day we visited the library. Wendy walked up to the librarian (who did know Wendy was receiving Chemo) and proclaimed, “Watch this!” And put her hand to her head and pulled out huge clump of hair. In a way she saw the humor in the shock value but mostly Wendy was amazed by it herself. On the way home that day she kept running her fingers through her hair and as more and more hair came out she kept saying, “This is so weird.”

The next day we made an appointment to get her hair cut, thinking it would be easier as it fell out if her hair was short. Wendy’s sister and I got hair cuts first. I had gone to the salon with the intention of cutting my into a short pixie cut to support Wendy in her hair loss. But Wendy strongly expressed to me that she did NOT want me to make a change like that. While my other daughter and myself got our hair cuts (no drastic changes) Wendy waited for her turn while playing with the wigs and running her fingers through her hair. As hair fell out she wrapped it all together and eventually make a little pillow with it. When it came to her turn, we decided there was no need to give her a hair cut, Wendy was just pulling it all out on her own.

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That evening, Grandpa asked Wendy to shave his head. Wendy was a little hesitant. She was unsure of using the hair clippers, afraid of cutting his ears and in a way didn’t want to see great changes in the people around her. But she did eventually pick up the clippers and ran it over her Grandpa thick head of hair (I think her Grandpa Jordan is where she got her thick hair). We had fun watching the change in her grandpa. I know that will be a memory she will never forget.

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The majority of Wendy’s hair fell out the next day, with some baby fine whispies left. We did cut those to a few inches. Wendy thought about making a pillow out of her hair collection, but we opted to wrap her hair collection to a tree outside, thinking birds can use the strands for nest material.

wendy after surgery

Wendy kept her baby fine whispies till January, when those eventually all fell out and she was left with a slick bald head.

It is hard to explain, but I love her bald head. Of course I would rather her not have to do this and lose her hair. But her head is beautiful and soft. Maybe it reminds me of when she was a baby, when she would snuggle in my arms and I would kiss the top of her bald little baby head.

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Wendy has needed more snuggling lately and I kiss the top of her bald head. I will be glad when she has hair again, but at the same time I will miss her bald head and I will cherish the tender moments we have shared through the many visits in the hospital.

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Unpacking My Purse

When chaos seems to be overtaking your life, sometimes it is the little changes that can make a huge difference. I have been writing about some heavy topics lately. So let’s talk about something lighter today. Let’s talk about purses. Not chemo, not hospital visits, purses.

I know many women have a huge collection of purses. Purses in every color and style. Purses for every occasion and purpose. Not me. I have two purses, one black and one blue and a backpack. I pretty much use one purse till it dies.

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My purse carries my ID, keys, money, cell phone, makeup, a selection of essential oils, a brush, essential oil samples, my planner, pens, hand lotion and whatever my kids decide they can’t carry but need to bring along, old receipts and the weird collection of things that just end up there after an outing or shopping with children. My purse used to live just where ever it landed when I got home. When I needed to leave the house there was usually a mad hunt for it.

In December Chris and I read the book, “The Life-Changing Magic of Tidying Up: The Japanese Art of Decluttering and Organizing” by Marie Kondo. This book presented me with a completely different view of organizing. Instead of organizing for yourself you organize out of respect for your belongings. I know it sounds weird, but it comes down to stewardship. While the author does not talk about God. I believe all I have is from Him. I should be caring for all I own like it is the Lord’s. This counts for the little things, like my purse as well as my house and this farmland.

My new habit: letting my purse rest. When I come home, instead of just dropping it on the floor full of the day’s load, I empty it. It has become my coming home ritual. The top dresser drawer has a place for my keys, wallet, essential oil bag, makeup, lotion, and essential oil samples. I decide then if I need to save receipts and file if needed. My children’s collections are returned to them. Trash is thrown away. My empty purse is placed in my wardrobe.

The result. I know where my purse is the next day. I’m not looking all over the place for my keys. I am not carrying with me receipts that are a year old, legos, 10 ink pens, 3 chap sticks, old Kleenex and a handful candy wrappers. There is relief in just not carrying junk with me everywhere I go.

Another result is that I feel more at home when I follow through on this habit. I have unpacked my supplies for traveling and my running and have given those supplies a home. I have also mentally unpacked.  I don’t have to always be on the go all time. I can just be home.

Where do you keep your purse? What do you carry in your purse? Do you have a ritual which helps you feel more at home when you walk in the door?

 

 

 

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While I’m here, God…

The kids on this floor of the hospital often walk around the floor along with a parent and of course their iv tower (we call Wendy’s her dancing partner). I was walking behind a little girl today as she was doing a lap. As I turned off to head to the elevator it struck me that something was different, something out of place about that little girl. I had to think on it for a bit, but do you know what was different about her?

She had hair, long, curly blonde hair flowing down her back. What a weird situation we are in right now where a girl with hair seems out of place.

Now that we are on the other side of surgery the shock of Wendy’s diagnosis has faded some and I can reflect on our experiences more. I wish I had been writing events and feelings down the past 6 months. One doesn’t walk through a trial like this without learning more about one’s self, life and God. Is this blog the proper place to share those lessons? Maybe some of them.

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During the first few months of hospital visits, when Wendy would get discouraged she would often cry and ask me why she had to get cancer. My response was an honest, “I don’t know why, but we are going to bring light to dark places and show love to the kids we meet during these hospital stays.” Did that response help her? Did I say the right things to her? I don’t really know. So much about parenting isn’t saying the right combination of words, but it’s about being present, being honest and loving unconditionally.

I don’t believe God gave my daughter cancer, even for the grand purpose of encouraging others. We live in a fallen world where things like sickness, like cancer exist. It is in this fallen world that we are given the opportunity to  shine like stars. We once heard a preacher say that when in prison, Paul didn’t ask God “WHY?”, Paul asked God, “What do you want me to do while I am here?”

When we first learned of our 9 year old’s cancer in September I would have described the situation not as “weird” more like terrifying. But even then, in the middle of our fear we knew God was working, that God loved Wendy more than we did and that God wanted us to “do” while we were here. Not just fear, not just pray, but “do”. God calls us to action.  We have been reaching out to parents here in this hospital, praying with many and continuing to pray. Our prayer list grows with each hospital visit.

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Writing, like reaching out to other parents, is one of those things I need to do as part of the opportunity in front of me.  This has been an unexpected  and weird place we have been in, the world certainly looks different now.  Those experiences and lessons are worth sharing.

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The Wall of Water

“The Lord will fight for you; you need only to be still.” Exodus 14:14

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On September 1 we learned our 9 year old daughter had cancer in her leg. A bump just above her ankle took us to the doctor. I was expecting him to say she had a really bad sprain, but instead it was,

It is important we stay in control of our emotions…..

It is cancer.

In the next two weeks she had a biopsy of her bone in her leg, multiple scans of her entire body and a spot scrapped out of her lung, which turned out to be a harmless granuloma (Praise God!).   She was diagnosed with Ewings Sarcoma and chemo started on the 16th.

First round of chemo

Chemotherapy… I approached it with dread, I wanted another way, but Ewings Sarcoma can move quickly. We had to act quickly with what was available to us now. I had to walk through that with faith and prayer and I looked for examples in the Bible. I looked at the Israelites.

We tend to be critical of the Isrealites as they fled from Egypt. How could they repeatedly turn from God and question His provision and guidance when they personally witnessed so many of His miracles? the plagues? Mannah? Pillar of fire? What was Isreal’s problem?

But while they certainly had their failures they also are a model. They did leave the land they knew for an unknown territory with unknown conditions witnessing some terrifying miracles. They had experienced slavery and lived through the Plagues to finally be released from Pharaoh. What were they thinking as they approached the divided Red Sea?

Being pursued by the entire Egyptian army, death at their heels and in front of them a path.  A path with a wall of water on each side. Think about that – the terror of those walls of water. To walk that path where those walls of water could come crashing down and kill them all. Certain death behind them, possible death through the only path now available.

Why had God lead them this way? If God was going to do a miracle why didn’t he just cause the Egyptians to get lost? Why didn’t he cause them to go blind for a few days? Why didn’t he just strike Pharoah dead? Wouldn’t that have been easier?

Why did they have to stand there – a wall of water ahead of them and army behind them?

Did some of them stare into the cliffs of water and wonder if they should turn and fight, wonder if their chances would be better against the army? Did some of them calculate the risk of the sea filling back in before they reached the other side? Did some of them see the walls but choose to focus on the path and walk through the darkness, trusting the opening would be at the end? (It was night when they crossed.) Or did they just see the cloud ahead of them? God leading the way?

I can stare at the wall of water – I can research the dangers of chemo, the origions, I can question the motives of the pharmaceutical  companies. I can spend my energy questioning if we should tackle this cancer invading my daughter’s leg naturally.

one week after chemo

But God put chemo as our path. (I am not critical of others who do choose more natural approaches with their cancer, I just know that for Wendy for this moment, Chemotherapy was what God has provided).

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I can question why God didn’t stop this from happening, or why God didn’t just miraculously remove the tumor.

Wouldn’t that have been easier, God?

Why are we here with chemotherapy ahead of us and cancer threatening my child’s life?

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We trust.

We are still.

God loves Wendy more than we do.

We hold up our daughter with open hands and we walk through our walls of water.

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December’s surgery removed the tumor. Praise God, there are no residual cancer cells in her leg! Now, we have to finish up chemo and I have to remind myself that this is our path. That God is fighting for her now.

By miracle or medicine God is healing our daughter.

1106151324b_HDR~2Have you had to BE STILL and let God fight for you?

What is your “Red Sea” moment?

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Monday Mother’s Prayer: Psalms 63:8

wall climbing psalmsLord,

Please instill in my children a soul which passionately follows after you.

I pray that their hearts cling to you.

You will uphold them.

You will keep them upright.

Be their handhold,

their steady rock,

their sure footing.

With you they will go further and higher.

With you they will

achieve more

and see more.

 

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