When Time Stood Still (Pt. 3 of 5)

Where were we? Oh, yeah…Team Dracula just came in to take (more) blood after our son had been screaming his head off all night and hadn’t been able to sleep. I just want to take this moment to say I realize everyone has a job to do.  I do not fault them for doing their job. The flip side to this: our nurse, Stephanie, also had a job which she took very seriously.  Her job was to be our advocate of common sense. As Team Dracula was circling around, Stephanie barges in our room, saying, “No. No, no, no. That poor baby has been up all night and just went to sleep. You are not waking up that poor boy just so you can get some blood. Come back later.” In my book she will forever be referred to as Saint Stephanie–she bought us 1 1/2 hours. <Again, bless her>  It was just an hour and a half but it was just enough to allow us to recoup for the hardest two days of our stay.

In the early morning after blood was drawn and the doctors made their rounds, we were told as long as the blood results came back and looked okay, we would be allowed to go home around 1-2pm. Really?  Go Home?  Awesome!  Well, 1 o’clock passed. And so did 2 o’clock. We were then told the oncology team would come speak to us around 4 – 5 p.m. Hmm…that doesn’t bode well for us, does it? At 5 o’clock, oncology came and told us they suspected from preliminary testing results that Mac had a rare disorder called LCH (Langerhans Cell Histiocytosis). The oncologist and hematologists each explained why some think LCH is a cancer but why “purist” and hematologists think it is not. We were told to not get on the Internet because the information we would find would be very misleading.  True to human nature, we clickity-click-clicked our way through Google. Long story short, we would not be going home.

We were transferred to the oncology ward as we waited for final confirmation of diagnosis.  As suspected, results confirmed Mac had multi-system LCH. Our new room was very nice and unlike our other room it had an expansive window with a great view. Unlike our room, the words and experiences we would have here would be some of our worst during our stay.  Once we got settled, the oncology team came to talk to us again.

A Room with a View 1/May/2013

A Room with a View

This is where we really start to spin. I feel like I keep saying that but truth be told, we lost concept of time, nutrition, and hygiene.  We were a motley crew, party of three (four if you count pups).  “Test results are LCH positive. Your son has LCH is his bones, skin, lymph nodes, soft tissue tumor…” This is when I felt I was not in my body…this was not happening. I was sitting there. Crying. Disbelieving. “Your son will need to go into surgery tomorrow for a bone marrow biopsy and to implant a Broviac Central Line.” More words. More humming in my ears. “He will be on chemotherapy for a minimum of a year.” Humming. “He cannot be in crowded public places. He cannot take a bath, go swimming…” More humming. “Please, stop talking,” I kept thinking.

After being hit with a ton of bricks I took a deep breath. “At least we have a diagnosis and we can move forward.” Well, not so fast. We can’t move forward until he has a blood transfusion. I claim I know what it feels like to have a broken heart – in this moment I realize that “no…now your heart is broken. This is what a broken heart truly feels like.” I  was being verbally suffocated while my heart turned into the ash of a million pieces.

The first attempt (that’s right, there was more than one) for the blood transfusion was through an IV in Mac’s arm. For one reason or another, it was not taking so it was decided to put a second IV in his leg. After blood started pouring all over my son and my husband it was decided that an IV would need to be put on his head. Yep…a blood transfusion straight to his melon. Everyone, their brother,  and their grandmother’s dog tried finding a vein in his pale, soft skin…Mac’s veins were just too tired to cooperate. Three botched attempts left a bruise so deep in our baby’s hand it bruised from his wrist to his fingertips for almost seven weeks. Again, we found ourselves constantly holding our baby wondering when (if) this would ever end. I cannot speak for my husband but I was at the end of my rope. How much more can he take?

Blood Transfusion 1/May/2013

Blood Transfusion

We were told the transfusion should take about three hours, however, at the fourth hour, the transfusion was stopped as the blood was no longer good for use. The doctors assured us that even though he did not get all of the blood it would be enough to get his counts where they needed to be to start chemo on Thursday or Friday. The crazy thing–they left all three IV’s in him because they were unsure which would work best for his surgery and biopsy the next day.  Our poor little guy looked like the backside of an entertainment center:  cords and lines everywhere.

Trying to Find Humor...Trying

Trying to Find Humor…Trying

As the night moved on, we saw something wonderful. Our pale, fatigued boy had a new beat to his step and a pink glow to his skin that we hadn’t seen in days. He even got down to crawl around and to play the guitar (which, I know made his father very proud). Seeing him act like an eleven month old, despite all the cords, lines, and bandages, was such a breath of fresh air.  This would be the first, but not the last, time Mac would demonstrate a resilience and strength we never knew would be possible.  Yes, Mac’s a fighter.

Late Night Guitar Shenanigans

Late Night Guitar Shenanigans


3 thoughts on “When Time Stood Still (Pt. 3 of 5)

  1. Amanda and Rick, thanks for sharing your story. I am sitting here overseas completely crying it out for you both as I read this blog and see the pictures. Your strength and courage are beyond compare. I pray daily for all of you, my efforts will now double. I know Mac is a fighter and I know God is by his side every second as he is for you and Rick.

  2. Hello. Ryder, our son has the same disease . We found the lesion on his leg. He cried out in pain if you touched it. After the same nightmare your story describes , we found out it was also in his lungs.June 10 th 2015 is when we found out. He is 8 months . We are started on chemo .This is his first week. I am a nurse in the operating rooms in Saint Louis Mo. I am trying to keep myself together. Even though I have some medical background I am lost to this. Like you said i’ve scoured the internet . I ve even gone to the medical libraries at work . It’s heartbreaking because I can’t find the answers. Any information on blogs or family sites for encouragement would be greatly appreciated.

    • Jessica, if you are on Facebook, I HIGHLY recommend “Our Histio Family.” If you have any question, no matter how odd or silly it may seem, chances are several people have experienced the same. I will let admin know to approve you, which will expedite your request. Additionally, look up this WordPress blog: https://raising2tweens.wordpress.com

      Thanks for reaching out–you are not alone! We will be praying for Ryder AND your family.

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