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)

Thursday, April 7, 2016

The Transplant Chronicles

Instead of trying to both remember and explain transplant, my brother thought it might be a good idea to move both the FaceBook Updates and pictures to the blog. This way, for those who don't have FB- or those who may have missed part of the journey, you can easily find a record to such events. (Instead of digging through my FB Feed. Trust me- its tedious) 

As a warning, this is FAR longer than my typical "Short and Precise" Posts! That being said-
Let's begin the recap!


Transplant Day -7
This simply means it is seven days until I will receive my beautiful Stem Cells back into my body. 
PICC Line was placed, making a grand total of two catheters entering the top of my heart through the vena cava. My heart was racing a bit, so it must be excited about all the attention it is getting! 


I'll try to post updates as frequently as possible. 
Much love! 

Transplant Day -5 
Since yesterday I have been receiving a high dose chemotherapy called Busulfan every six hours for a total of 5 days. It's pretty intense and extremely powerful. (It's totally killing my bone marrow soooo yah it's strong)
I'm awake now, but my brain is all fuzzy- thanks to the Benadryl. I just continue to knock myself out. 
Thanks for all the cards, messages, prayers, and love! 
Much love!
(PS- the blanket I have in the picture was from my Ewings Sarcoma hero, Sarah Kait. Her name is also on the shirt)

Transplant Day -3
The high dose chemo is slowly breaking me down. I'm thankfully not struggling with too much nausea... Knocking myself out seems to be my favorite option. 

Please pray for me as I fight the coming side effects. By day 0 (Transplant day), the side effects will be in full swing. Lots of fun ahead. 

Thank you for your prayers, love, and support.

#CalebsCrew #TransplantTakedown

Day 0: Transplant Day!!
Thank you all for the prayers today. 
My cells were infused at 11 AM! They are now furiously making their way to my bone marrow. Hopefully within 3 weeks they will engraft. 
Mucositis has set in, making it a rather long three weeks ahead. Please pray that the drugs do their job knocking me out and keeping the pain in control.
Much love and thanks!
(Oncology Team and my beautiful bag of Stem Cells!)
(I wore this shirt on purpose- to me, "Believe in Heroes" means so much on a Pediatric Oncology Floor!)

Transplant Day +1 
My counts have yet to zero out. Because of this, my Mucositis is being held at bay and I'm doing well. Thankful for a nice "Calm before the Storm" 
Very thankful to have my Princess with me! Today marks her 6th Year Diaversary. Though are lives have been overrun by Cancer, Type One Diabetes is still alive. 
Thankful to be together!

Transplant Day +4
From Ben: The effects of chemo are in full force, and Caleb has been very sick. He is starting TPN (IV nutrition) tonight, and has been throwing up and nauseous due to mucositis. 
The team is working hard to adjust his meds and bring relief, but for now Caleb is in possibly the worst phase of the transplant procedure. He could potentially be this sick for a week or more. This is also a serious time because colitis and other very bad complications are more likely. 
Would you please take some time to pray for Caleb? He asked me to send out this update so that you, his friends, can know where his and how things are going.Thank you!

Transplant Day +5
From Ben: Caleb continues fight the hardest challenges of his transplant. The worst side effects have morphed into a continual cycle of throat and mouth pain, nausea and vomiting, and itchiness from all the medicine. All three work off each other, preventing sleep and causing a lot of pain. 
Caleb asked me to write again so his friends can be praying for him today. His medicine isn't able to relieve the pain or nausea to much less than 8/10. In rounds this morning the doctors said they expect his counts to rebound around days +8-11, and today is +5. If we could commit to praying for Caleb over the next four days or so, he needs God's grace and strength very much during this time. Thank you!

Transplant Day +6
From Ben:
Sounds. 
Hospitals are like a living organism. The daily rhythm rises and falls steadily, with motion and life created by hundreds of people coming, going, and doing. Right now, though, sound is significant. Sitting here next to Caleb, peaceful sounds fill the room. He has five pumps running IV fluids now. Each one clicks intermittently. One ticks steadily every second. Another has three fast ticks every ten seconds or so. Caleb is on oxygen, which humidified by bubbling through a small water container. These sounds are quiet, continuous, relaxing. Caleb's steady, sleeping breaths are also welcome sound. After days of discomfort, peaceful rest is a gift. 
Tomorrow will be a new day. New people. New conversations. New sounds. Until then, thank you for following Caleb's transplant updates, and most of all thank you for holding him up with your prayers.

Transplant Day +7
From Mom:
Caleb is still not comfortable. Running a fever. Can't swallow. Had a breathing treatment that ignited the mucositis this evening which caused him to begin throwing up which caused him to feel like he was suffocating with mucus. He is afraid to sleep for fear of not being able to breathe. The team is on board every 15 minutes checking vitals. Leads on heart, oxygen, blood pressure, pulse all night. Platelets were given to stop the bleeding from nose and mouth. It stopped. He is receiving maximum pain meds and still at a 7-8. This is given solely by the anesthesiologist it is so strong. 
This morning's update:
We just finished rounding with team. They are sure he will begin feeling better in a few days. He will stay the same at this point until his counts start rising. They are doing everything they can to make him comfortable....but it is imited. NP said he will probably get more than one fever. His fever is down this morning since they added IV Tylenol. He smiles when nurses come in and holds their hands and tells them thank you. He is so dear to all of them here. They are all fighting for him....truly. 

(Hey! It's me. My Mom wrote two posts this day so I figured I would post both. Just wanted to give a head's up in case this seemed confusing.)

What does courage look like?  
Facing your greatest fears with a smile.
Caring for those who are caring for you. 
Accepting God's will moment by moment.
This courage that is shown in our boy's life is because of his love for others and his love for God. This can't be manufactured or produced by our will... This is the result of a living relationship with God. 
We can't believe it has already been a week since Caleb's transplant. When you are in times of crisis, time is irrelevant. The days run together into weeks.
We are right where the team anticipated we would be, but truly nothing prepares you for seeing your child in this much pain. To see the side effects of chemo, transplant, fever, exhaustion.... takes your breath away. I have to remind myself to breath right along with him. It's like if you hold your breath, maybe you will wake up, smile, and realize it was a bad dream.  
But this is not a nightmare for him... this is his reality. He is fighting every single moment of consciousness. When he briefly falls asleep, his dear body relaxes, and then jump starts again, because of pain and lack of deep breaths.
He is running another fever tonight. They are running multiple tests right now to rule out infection.
Today I had the privilege of holding and praying with a precious mom who had just received devastating news. Mutual pain bonds us together with strangers.... not strangers but "unmet friends." This is sacred ground the Lord has called our family to. We are humbled by our own weakness, and strengthened by the courage we see in Caleb.
We are encouraged by the prayers of so many around the world. I wish we could thank you all in person. Heaven will allow us the privilege to do that. Thank you from each one of us. May the Lord continue to bless this amazing community of love.

Transplant Day +11
Caleb has been through an incredible week. For seven endless days, he has been more sick than anything we have ever seen. A mouth and throat completely covered in sores, fevers, vomiting, nausea, little sleep, and unrelenting pain stretched the hours and days into a timeless blur that can't compare to anything in normal life. The doctors and nurses applied their exceptional effort and compassion to relieve Caleb's suffering. But ultimately, very little relieved the pain he faced. He has been on numerous (up to fifteen simultaneously) IVs to reduce nausea, pain, and fevers. 
Thankfully, Caleb has started to turn in a good direction. His ANC and white blood cell counts are rebounding, and his previously-frozen stem cells are now engrafting and repairing his body. Finishing transplant is still a long process - he will be in isolation for a while still. Caleb's throat and mouth are still very raw and sore and will not recover for months. His body will be susceptible to simple infections for up to six months, and he will continue to be very tired and weak from the past twelve months of chemotherapy and radiation.
We want to thank you deeply from our hearts for praying for Caleb. While we rejoice that he has made it through this dreaded phase of the stem cell transplant, we recognize that truly beating cancer will be determined over the next year and ultimately five years. Through that process we would be humbled by your continuing prayer for his complete recovery. But for now, we are so grateful for your prayers and for God's grace throughout these past weeks
My favorite memory of today is Caleb's relief to be through the worst of this transplant. So often we've been told how bad this transplant was going to be, and now to be finishing the darkness of pain is bringing hope, joy, excitement, and forward momentum. If anyone has fought and worked to enjoy a little hope through this past year, it has been Caleb; but an unrelenting treatment schedule made these concluding chapters impossible to anticipate. To see a smile on his face and hear the hope in his words is the most wonderful gift anyone could enjoy.

Transplant Day +14
Hello my friends!!!
Sorry for all the posts. Last week was worst out of three so far. My Oncology Doctors said it one of most severe mucositis cases they have seen here. I found that interesting. 
Plan is that within a 1 day, TPN stops. It is IV nutrition that has been feeding me for 2.5 weeks. I've been severely drugged with 3 narcotics that will completely stop on Friday. Also on Friday Double Lumen PICC comes out and I'm somewhat human! On Monday I go home and face 6 months of recovery. (Isolation and restricted foods) 
Come this summer, I Start online Nursing prerequisites. This fall I will be returning to MBU to return to nursing school and actually start a few Junior Nursing classes. Thought it still may take three years I will finally finish Nursing and hopefully return to Pediatric Oncology to be a nurse. 
Following this year of chemotherapy, 41 rounds of radiation, and this transplant- I'm exhausted and ready to be done! 
Thank you for all the prayers and support! Couldn't have done it without you! Also thanks to family for updating during the depths of this fight!
Much love,
(Enjoyed a lovely stroll with my ever-so-loving nurse, Emily!)

Transplant Day +20
From Ben: Caleb is still in the hospital, and beginning day 27 overall (+20 from transplant). We had hoped for discharge Monday, but the doctors plan to keep him for a while. Caleb's platelet counts are still low and he is having pain in his abdomen. The cause of these problems is unclear, so Caleb has been going through numerous scans and tests to figure out a possible cause. Until the doctors are satisfied with an answer and can provide a solution, Caleb will need to stay here.
Please pray for Caleb today! He has an upcoming MRI that is expected to help find the problem. Scans are fairly normal now, but they are much harder when you feel nauseous, tired, and in pain. Also challenging is the expectation to be eating regularly although he still has nausea. Please pray that Caleb can meet some of these requirements and make it to discharge. While we have to find answers, it also seems that going home would provide great comfort, rest, and recovery that are hard to achieve in the hospital. Thank you!

Transplant Day +23
This Post was from my Mom shortly after a rough reaction to IVIG. This drug was given to treat ITP. In simple terms, my platelets were dangerously low and transfusions were doing nothing. They infused the IVIG to treat the low platelets- however, the reaction to it was fairly severe.
Suffering.
What lessons can we learn form this unwelcome friend? As I watched my dearest husband leave the hospital this evening (after working a long day), I saw the weariness in his steps- i saw the result of suffering. For in this battle we, as in Caleb's Crew, are enduring suffering.
The greatest results are obvious in our beloved son. He has suffered all day. The side effects of the IVIG, that we hoped would not come, hit full force this afternoon. A high fever, vomiting, unrelenting head pain. It was so bad they ordered a CT Scan of his brain this evening. He is now on round the clock morphine and anti-nausea meds. Just when we thought we were through the worst, our old friend showed up again. Our son has suffered beyond belief or understanding.
 Is this not enough, Lord? Can he not catch his breath? 
"Suffering and love go hand in hand." When you love someone, their suffering is yours. Love cannot be absent when someone you love is suffering. Words fall to the ground, if love doesn't show up in times of suffering... and then I got it.
Lord, our suffering is yours also. You are here in this room bearing our sorrow with us. We are not alone. You love our darling son and his suffering is yours. Your words comfort us. "Call unto me all ye who are heavy laden and I will give you REST." Rest is what the suffering soul craves. Call ... call... call... we are calling this night dear Lord for our precious son. Rest... Rest... Rest... Your promise to the weary soul.
Thank you to our community of Caleb's Crew who continue to call on our behalf. For those of you who wake during the night to pray for us, thank you! For those who cheer us and brighten our steps, thank you! For the unsung heroes, who have suffered right alongside of us, thank you!

Transplant Day +25
Hey everyone!
This is day +25 from transplant. (I've been here 32 days) I'm slowly recovering, but feel totally in a blur. The longer I'm locked back in this hallway- the less human I feel. Let's just say I'm extremely ready to be done and go home! 
A friend of mine posted this picture and it made me realize just how much awareness is needed for pediatric cancers! 

Transplant Day +26
We Finally Get to go HOME!!!!


So, after the LONGest post ever in this blog's history- I hope this can help you understand a good part of what transplant entailed. Though this doesn't have all of the crazy stories- such as proposing to one of my nurses, holding nurses hands, telling my oldest brother to go on a "Singles Cruise" with one of my nurses . . . etc. (I was on Fentanyl and Ketamine- two legitimate reasons for such actions!) I think it at least gives a decent generalization to the journey! ;)

I could never say "Thank You" enough to each one of you who prayed, visited, encouraged, texted, messaged, sent balloons, sent cards, or supported my family and I during this time! You truly were the Crew that helped carry us through this major step in treatment!!!

Love to all!

(Again, I'm sorry for the incredible length! I'm not trying to suck you into re-reading these updates, however, I have a lot of followers who are not friends on FaceBook.) 

Thursday, February 11, 2016

Texas, Transplant, and Foreseen Triumph

(Enjoying the beating the Broncos gave the Panthers)

First off, for those that did not know- I just returned from an amazing trip to Texas! My friends, (pretty much like family now) the Tindells flew me down to Texas for a Super Bowl Party. My Ewing's Sarcoma Hero, Sarah Tindell, passed away this past December. She was my cancer coach and although we never met, we developed a special friendship through our common bond of cancer. Sarah's favorite NFL team was the Denver Broncos. She was diagnosed close to two weeks after the last Bronco's Super Bowl appearance in 2014. The fact that the Broncos made it to Super Bowl 50 made it so much more special when they went on to win. Sarah was truly the MVP, they just didn't know it. A special thank you to the Tindell Family for having me and for making the trip to Texas so awesome! :) 

Scans are complete, Consent / Consult meeting is done, and Transplant starts in six days.

To say I am nervous is an under-statement. As of my last blogpost, I was fairly confident that I knew what lay ahead. Last night, I found out that I didn't. Though I could probably write a very lengthy post on all that transplant will entail, I will try to summarize... We'll see how it goes.

First of all, the Stem Cell Transplant is a life-saving procedure to counteract the extremely powerful chemotherapy I will be receiving. (I had no idea about this) Though I truly wish I could reveal the names of the two chemo drugs I will be given, I am afraid I have no idea... I blame this on "Chemo Brain." What I do know is that the main chemo drug will target the Ewing's in a very aggressive manner. It is so aggressive that it will completely destroy my bone marrow, hence the need for transplant. The goal is that through this treatment, any remaining cells that may have not died from the past year of treatment will be destroyed. 

Secondly, the recovery from transplant is very strict and long. For six months post-transplant, I will not be allowed to be in public places such as school, church, or even stores. I will not be allowed to attend parties or social events. I won't be allowed to have direct contact with soil, plants, or lawn mowing - no working for my brother's landscaping business. :( I will have to be indoors with all windows shut. If I want to go outside, it will only be allowed if I am wearing a mask. 

Pretty much, my dreams of returning to work this summer are over, and I will be placed under house arrest. 

Finally, the Transplant is dangerous.
There are common side effects which are fairly treatable... and there are not so common side effects which can be fatal. 

For the common side effects, we are looking at Mucositis, low blood counts, and common chemotherapy side effects. 
Mucositis is caused by the chemotherapy and is seen in the breakdown in the linings of the mouth, throat, esophagus, and digestive tract. Usually these areas will become enflamed, extremely sore, and swollen. Last time I encountered this, my throat was so closed off that I couldn't even swallow my own saliva. In other words, it is extremely uncomfortable. Take Strep Throat and multiply it by 100. Trust me, I've had strep. ;) 
Low blood counts will obviously be treated by transfusions. Seeing I've had over 20 transfusions, there aren't too many concerns there . . .
Some other things they are a little worried about include fevers, infections, blood pressures, and oxygen levels. For most of these side effects, I will have to be admitted to the ICU because of the extreme fragility of my body. Any infection can pose a huge risk. If they cannot get an infection under control, the results are often deadly. I was told even a common cold can kill a transplant patient. Pleasant thoughts . . . 

And now for the deadly side effects! Haha, isn't that just wonderful? 
The first is called HSOS, or Hepatic Sinusoidal Obstructive Syndrome. This side effect occurs to some degree in 50% of transplant patients. In HSOS, the blood vessels in the liver swell and block the blood flow. This results in the liver being unable to remove waste products from the bloodstream. There will be drugs they will administer to counteract this. However, the best treatment is White Cell count recovery. 

They will also be watching for Lung Damage. This can be both mild or severe. In many cases, a patient is put on oxygen or a ventilator to help them breathe. In some cases, lung damage is long-term. 

The final serious side-effect is Cardiomyopathy. Heart damage from this is rare but life threatening. Pretty much, the crazy amounts of aggressive chemo I have already received pose a greater threat to me than the chemo I will be getting. They said if I get this, they will have no idea what drugs did it!

Now I could go into all the "long-term side effects," but I really don't care for them. The list of long-term side effects are so long already after a year of chemo, forty-one rounds of radiation, and now transplant - that I don't even care to know. Lets just say there is a large chance for organ failure, early death, secondary cancer, and many other pleasant problems. In my opinion, I'm taking a chance - but on the other hand at least I have a chance. I'm fighting incredible odds that say I won't be able to beat this. However, if this saves my life- it's all worth it! 

Well, looking back at all my rambling I guess that I didn't really shorten it. Oh well, if you want to skim read - I won't judge.

Transplant is this coming Wednesday. Your prayers would be appreciated. 

Much love!

(Ready to take on Transplant)