To My Ava,

For the last two years, I have written to Ava on Valentines Day. This year is no different. I want her to know how strong she is and while the sibling of a fighter can sometimes go unnoticed, she is never in the shadows in my mind. So this is my tribute to all the siblings out there and my Valentine letter to My Ava.

First a note about cancer siblings… they are thrust into a confusing, scary and unforgiving fight too… as Ava says “Cancer is a family fight.”

  • The sibling of a child with cancer (any life-altering illness I would think) is most often the unsung hero in the fight. The siblings are the ones who pine away, trying to make sense of so much they don’t understand while doing their best to keep everything normal.
  • They are the ones who bring the biggest smiles to their brother or sister; the ones who are bounced around from grandparent – to aunt – to friend’s house while the parents are focused on their ill sibling.
  • They are the ones who see the patient leave the house to head out for an inpatient chemo and not return to them a week later sick and ill from the effects of treatment and think the parent hurt their brother.
  • They are the ones who pray for life to go back to normal, to “help my brother beat that mean cancer, so we can play power rangers again.”
  • They are the ones who have all the games planned out for the siblings return, only to be disappointed when their brother or sister doesn’t feel like playing.
  • They are the ones who are pulled out of school because the doctors said there is nothing more we can do.
  • They are the ones who sit on the couch with their headphones on trying their best not to listen to the cries of a parent after the doctor leaves the room.
  • They are the ones who, at such a young age, don’t understand death… don’t understand that when the casket is closed, it will never reopen.
  • They are the ones in a state of constant confusion.
  • They are the ones who wake in the middle of the night crying because they can’t remember the last thing he said.
  • They are the ones who are angry because they feel like hope was a lie.
  • They are the ones who feel like a failure, while the other is hailed as a hero.
  • She was the one who was told she was his best medicine, which, in her mind, should have saved him.
  • She is the one who took the BEST care of him.
  • She is the one whom he called out for.
  • She is the last person he asked for.
  • She is the strength in our broken world.
  • She is the one who found the words to honor him in front of hundreds.
  • She is the one who was able to play under the willow tree, who not only found a smile for herself but one for the rest of us too.
  • She is the one who asked “how do we help all the other kids?”
  • She is the one who says “I bet Heaven has the BEST… birthday cakes, Christmas programs, swimming pools, oceans, etc…”
  • She is the reason we are able to fight Sam’s fight.
  • She is Sam’s greatest legacy.
  • She is our Saving Grace
  • As Sam said countless times, she is “My Ava.”

To My Ava,

I hope when you’re older and you read this blog, you are able to see yourself the way we see you. You are the most beautiful person I have ever had the pleasure to meet. You have a humble beauty which exudes from you through the way you consider others, give of yourself, and through the way you walk with grace. Your internal beauty matches your outward beauty in every way. When life gets too heavy or too hard, you always find a way to get a smile out of those around you. You can read when someone needs a hug, when someone needs to be alone or when someone needs to “just be held” as you sing all the time.

Over the past year, you have marched in DC to tell the world your brother is worth #MoreThan4. You have written your legislators. You have spoken with national leaders. You have launched your “Ava’s Avengers Sibling Support Packs,” and all the while you were finding your way in this world with Sam on your shoulder, not by your side. You have worked through grief to shine light. You found a new love for swim team, caught up in school, and found your sparkle again. You made friends from all over the country who were eager to hear your story, but you wanted to hear theirs too. When a mom at CureFest said “I’m so sorry sweetheart, about your brother.” and you looked right back at her and said “Have you lost someone too?”… then “I am so sorry you lost your son too. My mommy had to do that and it’s SO so hard. I’m very sorry you had to do that too.” She looked at you, then up at me with tears in her eyes and said you have a special one there… I said, “I know. I sure do.”

On your birthday last year, you shared your party with a balloon release for Sam. I asked you if you wanted to privately send a few balloons up for him from his resting place, and that just wasn’t good enough, it wasn’t good enough for Sam. You shared your party and 100 balloons were released with a prayer for All the Kids. You later told me, “Sam and I will always share a birthday, it’s only right that we should always share our party too.”

Shortly after Thanksgiving, you got sick and have stayed sick off and on since then. You had mono and are still feeling the effects, yet when you had your blood drawn and tests ran you said Sam was sending you signs – it was all going to be okay. After you spent the day at the hospital for testing, you asked to go see Sam. This is something you rarely ask to do anymore, especially at night (which it was). When we arrived, I barely had the car stopped, and you ran to him. You ran through the snow, tears streaming down your cold and rosy cheeks. You fell to your knees in the snow wiped his stone clean and cried… You told him you really needed him that day. You thanked him for watching over you, and that you knew nothing bad will be on the tests because you are here to finish out his mission. You sobbed and thanked him for giving you the strength to know you’d be okay. You kissed the photo on his stone, bowed your head and prayed “Dear God, Please keep me healthy, so I can help Sam here on earth while he helps you in Heaven. And please tell him we need him here too, we miss him and love him…. Amen.”

Ava, you have no idea the impact you have on me. You don’t know what your strength does for all of us, so when you read this, know we are all in awe of you, proud of you and grateful for you. We love you Ava Bug.

Love with all of my heart and soul… to the moon and back,

Mommy

This article was originally posted on Sam’s CaringBridge site.

Sam’s Story

The original story and first battle:

Many of you know that for about a month we have been watching and seeing multiple doctors to determine what a bump on Sam’s nose was. He had gotten into a patch of seed ticks while picking blackberries with Matt and Ava. Sam had them so badly that he ended up with over a hundred tick bites. Matt and Ava had a few, but nothing major at all. While treating his bites, I happen to notice a spot on his right nostril that seemed inflamed. Logically, we thought this had to be a reaction of some kind to the tick bites.

We took him to the doctor, and he was put on antibiotics and we watched it. Over that weekend it seemed to be getting bigger, I took him back to the doctor and was referred to an ENT. We were thinking at the time it was possible one got in his nose and bit him from the inside. The ENT reacted very quickly and did surgery the next day, planning on being a very simple procedure to lance the growth, drain and clean it out – of course all the time assuming this has to do with the tick bites.

While Sam was in the surgery (that we were told would only last about 15 minutes) Matt and I commented at about the 25/30 minute mark that we must have misunderstood the timing; probably what they meant was the actual procedure would only take 15 and of course it made sense that we would have to wait longer than on 15 minutes….silly us and our poor listening skills.

The Doctor came out and explained that he was surprised there wasn’t an infection, and it appeared to be a lymph node tissue but couldn’t figure out why it would be so inflamed or in that exact location. He explained that he sent cultures for full work up to determine what it was. It’s worth mentioning at this point, that Sam had charmed everyone in that hospital that Saturday morning; from receptionist to the Doctor and nurses. He told them all about how he was going to get a new Ninja Turtle after this and didn’t want to be a doctor when he grew up but an electrician, everyone kept going on about him.

So the next thing for us to do was wait… we waited and waited and waited. Many possibilities running through our minds, and we did see the doctor a few times while we waited to check his nose, and the growth seemed to be coming back. Still, we waited some more. After almost a week we found out the cultures were fine, and the pathologist said it looked “strange”. He sent it to University hospital to get a second opinion. In the meantime we did a CT scan, which only showed the bump we knew about. This was good – it ruled out some possibilities. Then we waited some more. Late Monday afternoon I received a call from our doctor saying the pathology tests were back from MU and Capital Region with the same results, then telling me they were being sent to the Mayo Clinic. At the sound of the name Mayo Clinic, my heart stopped. For good reason, he went on to explain that this is not an easy call for him to make and that Sam has Rhabdomyoscarcoma, a very rare form of cancer. He explained that Rhabdo means skeletal and myo means muscular and of sarcoma being a type of tumor.

Dr. Howland was wonderful and stayed with me on the phone until I was ready to get off while explaining as much as he could, as kindly as he could. Somewhere in all of it, I was able to scratch down a very bad spelling (spelling is not a strength of mine) of the diagnosis and that was about it. We agreed, Matt and I would meet him at his office the next morning. Like any good parent – I began to unravel. By the time I got home to tell Matt, I had semi-composed myself, and we put a movie on for the kids and prayed.

The next day, we met with our ENT who apologized for not knowing more about this form of cancer and vowed to do anything he could for us. He really is an outstanding man. He told us he felt like the tick bites were God’s way of pointing this out to us, and we are lucky because we caught it so early. We agree with him, for the tick bites to be completely unrelated, the coincidence of timing is unreal – so unreal it has to be from our God.

At this point Aug.31st, we have been lucky enough to get into Children’s, but also to have the majority of tests completed at the end of yesterday. This is great news because now we will be able to meet with his oncologists and ENT on Tuesday or Wednesday. It is possible that Sam will have a surgery to remove a tumor early next week. There may be more, and that’s what the scans will tell us. Of course, we pray it is only the one. If the scans show more tumors the surgery will likely be postponed and go straight for chemotherapy and radiation.

Rhabdomyoscarmas are very rare and typically only have around 350 diagnosis’ per year and almost always in children 1-5 years old. At this point it is known that Sam has a soft tissue sarcoma pending scan results on others. Ava is not thought to be at risk at this point, although Matt and I hope to have her scanned as well – just to be safe.

Ava is also a huge portion of our concern and how she will handle kindergarten without her twin brother (for a portion at least) and her best friend. We have enrolled her in dance again to try and make sure she gets some individual attention from Mommy and Daddy too. Our fear is that Ava will have to sort out her emotions and curiosity while answering others too. She knows what is going on, but on a 5-year-old level.

We are grateful for all of our support. We belong to an amazing Church where we couldn’t be happier. The kids are at a great school that I am even more grateful for now, and we have my parents 7 miles away.

Please check back, and above all else please pray and pray often for our Sam.

The beginning of the second battle:

Sam was declared NED – No evidenece of disease on St. Patricks day March 17, 2014 after an 8-month battle with Rhabdomyosarcoma undergoing 34 chemos, 20 proton treatments, 6 surgeries and one month away from home for treatment.

On March 19th, 2014 we were told that it’s back and with a vengeance… that our son’s best prognosis was “hope.” His new battle is against the same rhabdo-monster, only this time in his bone marrow in almost all major joints; shoulders, elbows, wrists, fingers, hips, knees, ankles, toes, as well as the spine, liver, lung, and shoulder blade.

We need a miracle. We were told this is off-the-charts rare, and Sam is basically a new type of case. We sought opinions from four top pediatric oncology hospitals, and all had similar opinions on treatments. “There is no protocol for this type of relapse, it’s unheard of” we were told. We agreed on a plan of action with the doctors that we feel makes sense. It’s hard to say we feel good about any of it, except that God is on our side. We have experienced more than once the presence of God in Sam’s fight. We pray for his intervention and to guide our doctors toward a cure.

Sam’s first round of chemo for Battle #2 started March 25, 2014.

This article was originally posted on Sam’s CaringBridge site.