Thursday, May 12, 2016

From Friends to Family

(Though Ben objects, Emily is obviously our eldest sibling)

A little over a year ago I was thrown into a world I never wanted to enter. 
I lost connection with everything normal. 

I was deprived, devastated, and dying. 

I was thrown into the world of cancer.

(Katherine and I feasting on popsicles as she explained how my port worked)

Within minutes of being on P4, light began to shine through the darkness. Though I was still under sedation, the nurses quickly put their skills into motion. Whether explaining, comforting, or caring for my family and I, their commitment to their patients was obvious. Upon coming out of sedation, my first nurse, KatyZ, worked overtime to make sure I was comfortable. She never left the hospital that night until I was in a good place. 

Within the first week, I quickly fell in love with my new family. Their love was magnetic. It was surprising. I expected the "so-so", "typical", "awkward" nurses to eventually show up. Thankfully, I was disappointed. Not one nurse on that floor ever made me feel uncomfortable (even though I was obviously the "new kid on the block"). I was quickly brought into the family and treated like royalty.

(Never a dull moment with Jess- hence the bottle of Tea in her hand)

Throughout my year on P4, the level of love never wavered, as the level of care never slacked.  

On days that were depressing, Jess was there to crack jokes- play pranks- or have "Sing-offs". Realizing that though cancer had me down, it was only temporary.
On days that were painful, Emily was there to cheer me up with her "Oldest Sister" wisdom. She immediately became part of our family by gluing her face onto our family photo. 
On days I wouldn't eat, Katherine would cater to my demands and eat popsicles with me. Even though I'm pretty sure she wasn't hungry. 
On days that were mentally overwhelming, Jordyn was there to listen. Understanding that I didn't want people to act like they knew what I was going through, but rather just listen instead.
On days that were boring, Ashley would happily intrigue me with her adventurous tales of past trips she'd been on. Helping me look forward to a life beyond my cancer. 
On days I missed my pup, TexMeg would share photos of her dog. Then talk about home-made BBQ brisket. (She had an uncanny ability to make me hungry even when I was nauseated.) 

(Jordyn and I coloring her masks. We determined they were too gloomy for a Pediatric Floor)

You see, my nurses weren't there to put in their hours. They weren't there to make a paycheck. They weren't there for themselves- they were there for their patients. They taught me that being a nurse is much more than a job- it's a way of life.

(Ashley giving a few pointers on Nursing. You I'm practically an RN)

Nurses rarely get the credit they deserve. Honestly, I could write a book on all they have done for me. They have not only saved my life, but invested their own lives in mine. They stretched out their hearts knowing that at any given moment- this cancer has the ability to easily hurt them. 

During Nurses Appreciation Week, please remember to thank your nurses. Every nurse on P4, every nurse in American Family Children's Hospital, every nurse in the world- deserves our love, respect, and thanks. They have given so much of their own lives by daily investing in others. Saying "Thank You" is the least we can do.

(The most awesome HomeHealth Nurse in the World! Katie's skill with accessing my port is commendable. Her compassion for others is incredible!)

Saturday, May 7, 2016

The Promise

(The day we learned my tumor was Ewing's Sarcoma)

In the past year, my appreciation and respect for my mom has gone through the roof. This Mother's Day most people will run to the store, buy a Hallmark Mother's Day Card, and say the same-ish things they say every year. (At least that's what I did) 

However, right now I would like to take a moment and reflect on why my Mom means so much to me. As a verb, "mother" means "To bring up with care and affection." In this post, you will quickly see that my Mom has both lived that out - and blown the quaint definition out of the water . . . 

On April 14th, 2015, my Mom was with me when we received news of the cancerous mass in my shoulder. Within days, I was transferred to UW Children's to begin treatments for my cancer. At the beginning, every single admit seemed to reveal a new problem. Whether it was educating us on Ewing's Sarcoma, teaching us the rules of dealing with cancer, letting us know it was spreading, or helping us adapt to a world that every human dreads - I noticed one thing was consistent: My mom was always by my side.

Before Cancer uprooted our world, Mom had a great job. She worked at a daycare doing what she loved most - taking care of babies. (I assume that is because us four boys were such amazing kids that she had to keep working with little children!) She loved her job, loved investing in others, and loved being able to have some independence (seeing we are all older now). 

Then cancer hit. 

I'll never forget my mom promising me that she would never leave my side through all of treatment. 

She never broke that promise.

(Hanging out waiting at a Radiation Appointment)

Whether by my side as I vomited through endless nights,
Rushing me to the ER at 2 AM,
Unexpectedly heading to AFCH for transfusions,
Bringing me my slew of pills every few hours,
Traveling to P4 for treating an endless variety of chemotherapy side effects,
Driving me to radiation daily for months,
Holding my hand as I battled through transplant,
Listening to me try to explain the unexplainable pain as I watch those I loved die from cancer,
Understanding that though she couldn't feel my pain, she was there to help bear it,
Willing to go anywhere to get me anything that would help make treatment more bearable,
Loving me regardless of where I was . . .

Mom was always there

She wasn't there for the first month, the halfway, the end - She was always there.

This Mother's Day is like none other before.

The love that Mom has given me is unequalled, unbeatable, and almost impossible to adequately explain. 

Thank you Mom, for always loving, caring, and supporting me through this past year. Your actions speak louder than my words ever could!

I love you so much! 

Happy Mother's Day!!!

(My incredible parents - 4th of July)

Thursday, April 28, 2016

SuperHeroes- Redefined

(Meet Josie,  P4Princess- super talented artist- and UNO Card-Master.)

Today was National Superhero Day.

Right now in our culture, superheroes are a big deal. They usually have hidden powers and supernatural strengths! The Webster Dictionary describes them as, "a fictional hero having extraordinary or superhuman powers; an exceptionally skillful or successful person."

This describes every cancer kid I have met this past year. 
Whether three, eight, or sixteen years old, these kids continue to amaze me. What do I mean?

The most common misconception of cancer is that it is all extremely depressing, somber, and full of pain. 

However it is important to note this fact:

Cancer is like a coin. 
On one side, you have a terribly dark place. One filled with tears, horrible pain, and loss. 
On the opposite, you have strength, resilience, courage- and even laughter.

(Chemo poles by our sides, and Macy proved a point. You can still laugh and give "Paint-Covered High Fives", even if you don't "feel like it")

Through the most terrible of times, I still remember the days of chatting with the little superheroes that surrounded me on P4.

On days that each of us were receiving poison to kill the cancer, we were laughing and sharing ambitions, dreams, and goals.

Even when we were most sick, barely able to get out of our beds. We still could wink, wave, or smile from a distance and know that we were in this together.

(Stewart provided awesome days filled with conversations of our P4 experiences. I don't think we could ever run out of things to talk about.)

You see, when you have life stripped from you . . . you begin to place value on different things. 
You stop worrying about "what" you have, and start focusing on "who" you have.

That is the beauty of cancer- it gives you the eyes to see what you really have.

This past year has been the most difficult year of my life. However, I wouldn't have wanted it any other way.

The lessons, the friendships, the miracles, the losses, the pain, the complications- have molded me into the person I am today. 

Through this God has given me the opportunity to meet the real superheroes. 

These are the kids that hold my heart . . . these are the kind of kids I want to invest the rest of my life back into.

No matter the outcome of my cancer- I know for certain what Stage 4 Bone Cancer has taught me:

My life is awesome!



(Had the privilege of having the Wisconsin Lutheran Love Your Melon Team come and visit me for Superhero Day! This awesome group totally encapsulated the heart that Love Your Melon is built on!) 

Wednesday, April 20, 2016

When There is Nothing to Say: Part 3


How to Help When There is Nothing to Say

"These final thoughts didn't necessarily fit under what to say or what not to say, but I think there is some worthwhile information that might help you tangibly support a friend whose child has been diagnosed with cancer and possibly other long term illnesses. I present them in no specific order. 

Every child going through treatment for cancer should have an iPad. I know it sounds pretty crazy and so first-world, but I don't know how Kylie would have gotten through the boring days in the hospital without it. (Disclaimer: I do not work for Apple)

Texting was the best way to ensure a message got to us. In the hospital, our phones were always on silent to help her rest and we rarely picked up a call. We both probably still have unheard voicemails from last April. 

In the early days, we weren't very keen on surprise visits because Kylie's pain and sickness were extremely unpredictable. I'm sure that varies patient to patient, but we preferred a text first. 

Help with siblings. This falls under the action part of love, but it spoke volumes to us in the early stages of diagnosis and treatment. It was so hard to balance our need to be with Kylie with the needs of her sisters. Friends grabbed them and took them to dinner, movies, and sleepovers. It was a great relief to know they were not only provided for, but having fun as well. 

Most families going through treatment need some level of financial support or have a fear of fiscal unknown. If you can help, that takes an added pressure off. It doesn't seem like much, but a card with $20 in it makes you feel better when the rest of mail is bills. 

We were fortunate to have good insurance, but the costs that seemed to get very large were prescriptions and gas. If you prefer not to give cash, gas cards or gift cards to grocery stores with a pharmacy are particularly helpful. We also got a lot of restaurant gift cards, and they were wonderful to have on hand for our other children- who could use theme when we had long days at the hospital. 

There is a large community of support for children fighting cancer, and Kylie received things in the mail nearly every day. If you heart goes out to a cancer patient and you want to help, please understand you will most likely never receive a thank you. We are good Southerners and it went against every bit of manners we've been taught, but we were just too overwhelmed to send to send out thank you cards. 

We read everything- every note, letter, and comment on Caring Bridge, Facebook, and Instagram. I assure you that your words matter and comfort. Also, if you are letting kids send letters to a cancer patient, proof-read them first. Kylie got a couple from children who said things like, "It won't be so bad if you die because you'll be with Jesus." We knew they were sincerely hoping to comfort Kylie, but that was not what she needed to hear. We screened all her mail after that. 

I hope some of this has been helpful. I know these don't pertain to every family or patient as I can only speak to our situation. we had incredible support throughout her treatment and we are grateful for it. I pray ever family facing this long, terrible battle has friends to lean on. Some days, friendship and encouragement was the only way we made it through."

More blogposts and information can be found here. (www.MarkMyers.net)

Tuesday, April 19, 2016

When There is Nothing to Say: Part 2


Part 2: What to Say When There is Nothing to Say

"As a victim of a poor memory, I remember only flashes of our first weeks in the hospital. Visits, conversations, tears, rooms, tests, scans- they all run together in my cloudy mind. There is, however, one event I recall with perfect clarity. 

He texted to ask if it was okay if he stopped in on his way home from work. I wasn't sure we needed a visitor, but Kylie agreed. Freshly diagnosed with Ewing's Sarcoma, we were in the pediatric cancer wing where Kylie had begun her first round of chemo. By the time he arrived, our patient was sleeping, and I got up to greet him quietly. I remember he put his backpack against the wall and opened his arms to hug me.

I am not a hugger . . .
 This is weird . . .
He's here for Kylie, not me . . . 
Do i hafta??? Why???
I'm okay, I don't need this . . .

Not a word was spoken and I promptly fell apart in his embrace. I cried like I had never cried in my life. He just held on for the ride. 

What my friend Steve gave me that day was the very essence of what to say when there is nothing to say.

Love

Love is all there is. It can speak volumes without an audible syllable. It can be felt in a quiet room where words aren't welcome. It might be simplistic, but love is all that can break through the hard shell of pain and fear after a parent has heard the dreadful phrase, "your child has cancer." 

Let me say again, there are no magic words that instantly sooth, but here are some things that resonated with me when Kylie was first diagnosed:

  1. An expression of regret. "This really sucks" (or "stinks" for the less crass. but I assure you, it does suck!) 
  2. A profession of love and friendship. How do you say that? Um . . . "I love you." For those uncomfortable with the ever-personal "I," you can always lean on the family crutch for support and say, "We love you guys." 
  3. Presence. "I'm here." There are few positives in having a child with cancer, but one is that your calls rarely go to voicemail. Availability can be sensed. I knew very little in those traumatic first weeks, but I knew who was there for me, and I called on them when needed. 
  4. A promise of endurance. There is a long road ahead of the family. Like anything, many people with good intentions begin the fight full of fervor, but life gets in the way. No judgements here, I get that. A promise such as, "I am here today, tomorrow, and in six months," means a lot when given sincerely. 
  5. A specific offer of assistance. Sometimes, this isn't even verbal. If you see a need, meet it. 
  • We once came home to find a huge painted pot full of yellow flowers on our porch.
  • Sometimes our lawn just got mowed.
  • A woman who bakes incredible cookies would just stash dozens in our mailbox without a word
  • Friends organized meal calendars, ballet rides, and school carpools for our other daughters. 
This is the action side of love. Love does! Love molds unique talents into lavish gifts. Doing love doesn't have to be grandiose or expensive and is often best when anonymous.
    6.     An assurance of prayer and/or positive thoughts. To know that my little girl was on the forefront of people's minds was huge. Knowing that children included Kylie in their nightly bedtime prayers was humbling- especially when my prayers couldn't get past a groan and balled fist.

Nobody knows what to say to the parents of a child diagnosed with cancer. We didn't know what to say or what we wanted to hear- it was uncharted territory we'd rather not have explored. I assure you we were glad not to be traveling alone. If you have friends who find themselves on this heartbreaking voyage, I would urge you not to be afraid to approach them. Just step out in love, the right words will come. You might start with a silent hug. Even the bristliest of us cancer parents could us a hug from time to time."

More blogposts and information about Mark Myers can be found at here. (www.markmyers.net)

Monday, April 18, 2016

When There is Nothing to Say: Part 1


The following blogpost contains a direct excerpt from Mark Myers. Mark is the dad of Kylie, a Ewing's Angel who passed away February 13th, 2015. This past week, I had the incredible privilege of acquiring Mark's recently released book- Missing Kylie. 

Before reading this post, I would strongly suggest that the members of Caleb's Crew head to Amazon and purchase his book. (Click here) Here are my reasons for doing so. 
First of all, his writing's directly reflect so many of the thoughts, emotions, and situations that anyone with cancer endures. (Perfect way to familiarize yourself with the journey of cancer) 
Secondly, all of the profits will be invested into Childhood Cancer Research. (Perfect way to invest your money for a great cause!) 
Lastly, to remember his daughter, Kylie. Childhood Cancer is a big deal.
 It claims over 15,000 kids lives a year. Cancer is the number one cause of death by disease in children. It's time to for this to change. It's time to make a difference.
 (Perfect way to invest your life in others!)

Also, this post will be one of a three-part series that Mark has written. Out of the entire book, I think this section on "When there is Nothing to Say" will have the most application to the majority of my readers. In the next three days, the plan is to post each part of the series. If you have anyone you know that could benefit from this- please share both these posts and most importantly the book!



Part 1: What Not to Say When There is Nothing to Say

"Recently, I was asked for advice about how to respond to the parents of a child diagnosed with cancer. Let me say from the outset that I am a dubious source whose council typically causes some manner of regret. However, since I have stood on the receiving end of some pretty stupid comments over the past year, Ido have a fair amount of expertise in this particular area. 

First, there are no magic words, so don't try to find them. When one is at the start of a long, twisted road that includes the potential mortality of their child, words simply cannot soothe. They can, however, aggregate. So, I thought it might be helpful to look at some things that struck us the wrong way when we were facing our crisis. 

  1. Do not equate anything you've gone through (or had a third cousin go through) with their situation. This is an immediate conversation ender. We once had someone compare a month-long sinus infection to Kylie's cancer.
  2. One of the most frequent things we heard was, "What can I do?" No matter how sincere the offer, this can add stress to an already stressful situation. The parent of a recently diagnosed child has no idea what day it is or if they remembered to change their underwear for the past two weeks, so they most likely have trouble assigning tasks to the three dozen people who have asked. Vague offers of help only muddle already murky waters.
  3. By far the worst statement I got was, "I know how you feel." Uh, no you don't. Get back to me when you watch the rise and fall of your child's chest, wondering if it will stop during the night. And even if you have been there, your feeling sand mine are totally different things.
  4. Watch your quantity of words. Parents in this situation have a maximum amount they can absorb before they shut down. Docs usually fill that bucket daily.
  5. Persistence can be irritating. There were weeks that passed when we just couldn't answer texts and emails. It didn't mean anything other than we were focused on greater issues. A second or third text reminding us of the original only made us feel bad for our inability to balance everything. 
  6. Don't expect to assume a role that you didn't have before diagnosis. If we haven't spoken in years, I likely have someone else to bare my soul to. It is fine to offer, especially if you have dealt with similar issues, but don't expect it.
  7. Don't badger for information. We would have loved to have known specifics, time frames, and end dates. Unfortunately, these often don't exist in the cancer game and constant demands for information only serve to remind a parent of their helplessness. 
  8. If you made an offer that wasn't accepted, please understand it may be wanted or needed and simply came at the wrong time. Don't be offended or press for an answer. If the parent needs it, they will most likely return to it eventually.
  9. "No" is a perfectly valid answer that people must be prepared to accept without justification or hurt feelings. The parents do not need added drama in their life and shouldn't be forced to manage the emotions of others.
  10. With all of the fears and doubts of such a diagnosis swirling in the parent's mind, a mention of God's will can be a very slippery slope. While we are believers, religious platitudes were not extremely helpful, and I can only imagine how such words would be perceived by someone who isn't a believer.
This list is not exhaustive and I can only speak for my family. I think you will find it interesting that while we experienced all of the above, not a single cancer family ever did any of them. Never.

I would guess that this list could apply for other health or traumatic situations, but I can't speak to those since I haven't navigated the pediatric cancer waters. (Look at me, trying to follow my own advice!)"

More blogposts and information about Mark Myers can be found at here. (www.markmyers.net) 

Saturday, April 16, 2016

Finally Finishing

Monday kicks off the beginning of the end! 

I will be heading in for my final ten rounds of radiation. (2 weeks worth) Though many have expressed concern, this has been the plan all along. Back in August, I completed thirty-one rounds of radiation. Through the course of six weeks, we completed the boosted radiation to my entire shoulder blade, entire right lung, and my neck (for the lymph nodes). Although it seems everyone thought that was it, my radiation team had planned on splitting up the lung radiation. Apparently, the reason being that they wanted to be sure that the lungs didn't "shut down". Due to the large amount of radiation I was receiving, the lungs tend to take a beating and sometimes stop working. 
Simply put, the plan all along was to finish these ten treatments at the end of all of my treatment. So no worries, this is all part of the plan! ;)

The only exciting part that hadn't occurred to me was the fact that a large portion of my heart will also be in the radiation field. Seeing that the left lung covers a decent part of the heart, the heart will be receiving the radiation as well. They aren't wanting to "target" the heart. It just happens to be a part of the party. 

Is this something to worry about? 

My radiation team was happy to let me know about how much all this radiation increases my risk for AML (Acute Myeloid Leukemia), how radiating the lungs will build up scar tissue and make sports difficult, how radiating my heart puts me at risk for early congestive heart failure . . . 

For me? it just means another stack of papers explaining all the side effects that may- may not, most likely, or will take place some place down the road. 

Listen . . . after all of this treatment, the list of side effects is almost funny. I could write a book from all the side effects that "could" take place. Do I think they will never happen? No, but I'm willing to cross that bridge when I get there. For now, cancer has had its fun using my body as its playground. I'm learning that in this phase of finishing up treatment and stepping out from the protection that treatment provides- I have to mentally control my thoughts and focus on what I have ahead. 

No matter how many years God gives me . . . I've got to learn to make those years count. 

Whether it's nursing school and working in Pediatric Oncology, raising awareness for childhood cancer, or simply enjoying life and creating memories- the time I have is going to be filled with the people and things that I love most. 

Cancer has stripped me of enough- the last thing I need to do is let it take away from me now. 

(So happy to be enjoying time at home with my crazy awesome dog, Lego)