So, I am obviously not the best blogger as I... a) don't blog regularly and b) honestly, I forgot I had started a blog. Between the magazine and the book, I forget what I have written and for which project. But while I was up with Holden tonight rocking him back to sleep I rubbed my hand across his tiny neck and felt the raised scar that now takes the place of what was once perfectly smooth porcelain baby skin. I became overwhelmed with emotion and wished I had a place to put my thoughts down and then I remembered... oh yeah.. I do. So here it is: (in all its jumbledeeness because I am sleepy from staying awake to write this instead of going back to sleep)Since we started the magazine a little over 3 years ago, my email inbox has been the destination spot for hundreds of "worst case scenario" stories from families across Northwest Arkansas. A lot of them have had triumphant and inspiring outcomes but many of them were full of loss and heartbreak. I have cried with each of these parents and felt their pain, all the time knowing full well that I would never truly understand exactly what they were going through. And.. honestly thanking God everyday that I was able to comfort them instead of being the one needing comforting.
Because of that I almost feel foolish writing this post because we are so ridiculously blessed with the outcome.
When Holden was about 4 months old we were on our way home from the Tulsa Zoo when my Mom asked if we had been watching the spot on his neck at all (apparently Super Nana had noticed it before this and assumed we had too)
Spot? What Spot? I hadn't ever even noticed anything even slightly off when it came to my beautiful, perfect little boy. But there it was -- a giant bulge underneath the sweet pale skin on Holden's tiny neck.
I texted pictures to every doctor that I had the cell phone number to. They all said to watch it but it was most likely just a reactory node and he might have a cold or little infection and it would go away. I wasn't comforted and a simple Google search did little to comfort my already racing mind.
"Hodgkin's lymphoma, previously known as Hodgkin's disease, is a type of lymphoma, which is a cancer originating from white blood cells calledlymphocytes." - In a nutshell -- cancer!
It didn't matter that all the responses to my texts were meant to be reassuring. The fact was it could be something much worse. I was petrified because, again, my inbox continued to fill up weekly with "I didn't think it could happen to my child" stories.
We watched as it continued to not only remain but to grow which meant that it most likely was not caused from bacteria or an infection. Antibiotics were prescribed by one doctor to see if that helped, but when it didn't we were referred to see Dr. Manning at the Ear, Nose, and Throat clinic. He was concerned by the size but wanted to give it 6 months to see what it would do -- our only option was to put Holden under and remove it -- a surgery that was simple, but done on a baby was not something to jump into.
Fast forward 6 months. The follow-up visit was what we expected and feared. The lymph node had grown in size, not decreased, which meant removal and a biopsy.
"It's not cancer though right" I remember Jonathon asking. I waited for the "Of course not, this is all just a precautionary measure" response from the doctor but all I got was "I can't say at this point, it is really large, so we just have to remove it and go from there."
My mind and heart went through every story ever sent to me to be published in Peekaboo. "My child was perfectly heathly until one day.... " "We never saw it coming and then found ourselves fighting for our child's life..."
Was this our Peekaboo Personal Story? Was this our "Holden was such an amazingly sweet boy and he brought so much joy to people's life, he was put here for a reason..."
No! Stop It! I couldn't think like that but I also couldn't help but not to. We decided not to tell many people, because honestly we didn't want to think about it. Our fears were two fold - one something would happen with the anesthesia or during surgery and two - that the biopsy would come back positive for cancer.
When I told Ava that Holden was having surgery she immediately responded by saying "Oh, No.. that is not good.. we need to call and cancel that." Oh how I wish we could.
We wrestled with the fears of the "what if" every day leading up to the morning of surgery. Comments were made in passing that we were doing the right thing and if something went wrong we couldn't blame ourselves. That if it was something worse we would just throw our entire lives into making sure Holden got better. Every conversation like that ended very quickly and with a long silent pause at the end with a quiet prayer to God to watch over our baby boy.
The night before surgery Holden was not to have anything to eat or drink and since he still nursed at least twice a night I knew that it was not going to be easy. I just didn't know that it was going to be as hard as it turned out to be. Holden refused to go back to sleep when he woke up at 3am and since we had to leave for Fayetteville at 6:15 it meant we were up for good at 3.I didn't mind because I wanted to spend every minute with Holden before surgery.
We arrived at the Surgery Center at 6:45. Pre-Op is an experience I will never soon forget. Jonathon and I sat with Holden in a tiny space between two curtains and removed his little pajamas and replaced them with the miniature version of a hospital gown. The woman next to us kept us pretty entertained and our mind off what was to come with her complaints that she had to remove her teeth for surgery and how she wanted to make sure no one stole her shoes.
After citing Holden's short medical history to one nurse, and sitting quietly as the anesthesiologist went over her role in today's events, another nurse then came in and gave Holden what they called "goofy juice." She was so used to children spitting medicine back at her that I watched as she tried to figure out the best angle and approach to tricking him into taking it. I reassured her that Holden, at this point, was very hungry so it wouldn't be hard. Sure enough he not only downed the syringe of medicine he smacked his lips for more.
A few minutes later I was asked to do the hardest thing I have ever done to date -- I handed my baby over to a complete stranger who would take him to a room I would never see, put him to sleep with medication I didn't know how he would react to, and then cut open his neck and remove a part of him that could possibly tell a terrible tale.
I was numb as Jonathon and I walked back to the waiting room to sit with my Mom and my sister who had been with us all morning. I couldn't think and my anxiety levels were at an all time high. I hardly relinquish control when it comes to my kids enough for someone to even change their diaper little else this!
Before we could see Holden we first saw Dr. Manning. Everything went great and Holden was recovering, but the lymph node was even bigger than he suspected. It was the size of an egg which was alarming but he was confident that the results would be in our favor. I was still scared but my attention was completely on counting down the minutes for Holden to wake up so I could see his sweet face and know that everything was okay.
When an eternity had passed and a nurse motioned for us to follow her through the double doors that had separated me from my sweet boy I was elated to see my giant baby sprawled out across a nurse walking towards me. He still had his IV and a giant bandage covered his neck. He was now crying.
"Can he have something to drink to comfort him?" I asked.
"Sure do you have juice or a cup of milk?" the nurse asked looking around at the empty table.
"I am still nursing."
"Oh."
The look was priceless as the nurse looked at the giant man child on my lap. I knew judgment was being passed.
After I had comforted Holden back into the deep sleep that the anesthesia had taken him to another nurse came in. She told us how beautiful Holden was and how lucky we were. I knew she was right. Then she told us about her own baby at home. Only her baby was 36 with cerebral palsy. That she still changed diapers, fed her, and watched over her closely. She was a single mother and while tears welled up in my eyes when she spoke of her daughter, her face lit up with joy when she expressed the deep love she had for her sweet baby girl.
This woman was like an Angel to us that morning. She took out Holden's IV without him even flinching and then told us she would sneak us out with him still in his gown because she couldn't bare to wake him up to change his clothes. She hugged us good bye and I couldn't stop thinking about how happy she was despite the fact that she had so much heart break in her life. None of it seemed to matter in that moment as she comforted us. She loved life all the same and was thankful for each day she had with her daughter. She reminded me how precious our time is with the children that God gave us and no matter what nothing could change that.
After 36 hours of pacing and praying, Dr. Manning called with news that Holden's biopsy came back negative for cancer! I had never been more relieved by or overwhelmed with emotion after hearing such a short phrase. I remember Jonathon hugging Holden and telling him, with tears in his eyes, and an inflection in his voice, that he was so happy that Holden was going to be able to grow up to be a big boy and he would be there to see it.
The doctors aren't sure why the node grew as big as it did but they do know what didn't cause it and that is enough for us.
A raised, purple scar now reminds us daily how lucky we are and how we should embrace every moment we get to spend with the people we love because it can so quickly be taken away. How good health is not something we should take for granted. It also made Jonathon and I want to do and be even more of a light in the lives of the families who might be living in fear for their child's lives, because, while we only experienced it for a few months, it is quite frankly the worst feeling in the world!
I know that God had his hand over our little family through this entire experience. That he knew all along the outcome and that the little scar that remains is there for a reason -- part of that reason is the reminder I mentioned but I have a feeling there is even more to come.
Since the anesthesia didn't wear off for a couple of days Holden did receive a few more bruises when he ran into a few walls and tables but all and all Holden is back to being his sweet self and the giant lymph node that terrified us for almost a year is gone!
So, in the wee hours of the night when a deep sleep was replaced with Holden's cries to be held and rocked, I was more than happy to oblige.
After citing Holden's short medical history to one nurse, and sitting quietly as the anesthesiologist went over her role in today's events, another nurse then came in and gave Holden what they called "goofy juice." She was so used to children spitting medicine back at her that I watched as she tried to figure out the best angle and approach to tricking him into taking it. I reassured her that Holden, at this point, was very hungry so it wouldn't be hard. Sure enough he not only downed the syringe of medicine he smacked his lips for more.
A few minutes later I was asked to do the hardest thing I have ever done to date -- I handed my baby over to a complete stranger who would take him to a room I would never see, put him to sleep with medication I didn't know how he would react to, and then cut open his neck and remove a part of him that could possibly tell a terrible tale.
I was numb as Jonathon and I walked back to the waiting room to sit with my Mom and my sister who had been with us all morning. I couldn't think and my anxiety levels were at an all time high. I hardly relinquish control when it comes to my kids enough for someone to even change their diaper little else this!
Before we could see Holden we first saw Dr. Manning. Everything went great and Holden was recovering, but the lymph node was even bigger than he suspected. It was the size of an egg which was alarming but he was confident that the results would be in our favor. I was still scared but my attention was completely on counting down the minutes for Holden to wake up so I could see his sweet face and know that everything was okay.
When an eternity had passed and a nurse motioned for us to follow her through the double doors that had separated me from my sweet boy I was elated to see my giant baby sprawled out across a nurse walking towards me. He still had his IV and a giant bandage covered his neck. He was now crying.
"Can he have something to drink to comfort him?" I asked.
"Sure do you have juice or a cup of milk?" the nurse asked looking around at the empty table.
"I am still nursing."
"Oh."
The look was priceless as the nurse looked at the giant man child on my lap. I knew judgment was being passed.
After I had comforted Holden back into the deep sleep that the anesthesia had taken him to another nurse came in. She told us how beautiful Holden was and how lucky we were. I knew she was right. Then she told us about her own baby at home. Only her baby was 36 with cerebral palsy. That she still changed diapers, fed her, and watched over her closely. She was a single mother and while tears welled up in my eyes when she spoke of her daughter, her face lit up with joy when she expressed the deep love she had for her sweet baby girl.
This woman was like an Angel to us that morning. She took out Holden's IV without him even flinching and then told us she would sneak us out with him still in his gown because she couldn't bare to wake him up to change his clothes. She hugged us good bye and I couldn't stop thinking about how happy she was despite the fact that she had so much heart break in her life. None of it seemed to matter in that moment as she comforted us. She loved life all the same and was thankful for each day she had with her daughter. She reminded me how precious our time is with the children that God gave us and no matter what nothing could change that.
After 36 hours of pacing and praying, Dr. Manning called with news that Holden's biopsy came back negative for cancer! I had never been more relieved by or overwhelmed with emotion after hearing such a short phrase. I remember Jonathon hugging Holden and telling him, with tears in his eyes, and an inflection in his voice, that he was so happy that Holden was going to be able to grow up to be a big boy and he would be there to see it.
The doctors aren't sure why the node grew as big as it did but they do know what didn't cause it and that is enough for us.
A raised, purple scar now reminds us daily how lucky we are and how we should embrace every moment we get to spend with the people we love because it can so quickly be taken away. How good health is not something we should take for granted. It also made Jonathon and I want to do and be even more of a light in the lives of the families who might be living in fear for their child's lives, because, while we only experienced it for a few months, it is quite frankly the worst feeling in the world!
I know that God had his hand over our little family through this entire experience. That he knew all along the outcome and that the little scar that remains is there for a reason -- part of that reason is the reminder I mentioned but I have a feeling there is even more to come.
Since the anesthesia didn't wear off for a couple of days Holden did receive a few more bruises when he ran into a few walls and tables but all and all Holden is back to being his sweet self and the giant lymph node that terrified us for almost a year is gone!
So, in the wee hours of the night when a deep sleep was replaced with Holden's cries to be held and rocked, I was more than happy to oblige.
