Spencer's Miracle

Seven years ago today a miracle happened. Seven years ago today, my son became a two time cancer survivor. You don’t believe in miracles? Read on and let me change your mind. This is Spencer’s story, this is his miracle.

I’ll start at the beginning. At five months old, Spencer was diagnosed with adrenal cortical carcinoma. This is a one in a million per person cancer, a cancer rare enough but rarer even in children. It attacks the adrenal gland. We are born with two. These glands produce the adrenaline needed to help us cope with mainly fear and excitement. That heart pounding rush we feel when afraid or surprised, that’s our adrenal glands working. Spencer had a tumor that doctors believe he was born with on one of his glands. Through a surgeon’s amazing gift, that gland was removed completely and Spencer no longer had cancer.

Unfortunately it took weeks to figure out my poor baby had cancer and those weeks took vital parts of his being with them. Who thinks a five month old baby has cancer? A cancer hard to detect and so rare that each case is shared by doctors around the world for insight? We are often harsh on doctors, making them play the role of God and asking them to always know the answer. I feel privileged and simply blessed to have had the team of doctors surrounding Spencer that he did. Without them and their constant vigil, he would not be here, in any form.

Spencer had a stroke causing massive swelling in his brain. Had he not been so young and his fontanelles spot, still not closed completely, he would have suffered far worse brain damage. His stroke was so severe that he lost all functions. He had seizures often and sporadically. He had a right side VP shunt put in his head to help his brain relocate all the excessive fluid floating around where it shouldn’t be and to hopefully control the seizures. Doctors told me that it would feel like the worst migraine you could possibly imagine, so he was sedated for almost 2 weeks to help him through the pain that just moving, even his eyes, would cause him. He had to have a feeding tube placed in his tummy and a catheter to monitor his fluid outtake. During this time I could not hold him or move him. I was helpless as to what to do, seeing him lying there, motionless, no mommy to comfort him. Machines all around him, wires on his head for brain activity, IV lines, ART lines. He was so tiny in that big bed.

I read books to him all day, sang songs (I am tone deaf and it was not a pretty sound) and held his little hands. If he could hear me, feel me, any small chance he would know I was there. Finally after the swelling dissipated, he was slowly woken up. But my baby was no longer the happy, smiling alert baby he had been. He was terrified of everything. He had forgotten how to eat, how to sit up be. He was also terrified of being held or moved away from the surface of his hospital bed, so badly that he shook uncontrollably if any part of his body did not touch the bed. The fear in his eyes was so far beyond that of an infant.

Recovery was slow. If not for the help of therapists, the patience and genuine care for they had, I would have been lost and Spencer would become as helpless as I felt. They helped him with his security issues by holding him mere inches above his bed for as long as their weary arms would let them. They talked to him constantly in soft soothing voices. They gave him love and he trusted that enough to trust them.

Spencer had so many medications he needed also. Ten is the most I can remember and they were around the clock. Because of these, he grew very bloated and was quite the little chubby guy. He reminded us all of a tiny Sumo. He had rolls upon rolls of baby fat. Add the fact that he had to have his head shaved for surgery into that!

It was around this time that we met John. He worked in Safety and Security at the hospital we were at and I saw him often as I rarely left the building. We started to casually talk and when John took interest in not only me, but Spencer too…I was not thinking about love or men or even the outside world at this time. John brought me dinner, a snack, a smile at a time when those things were so unexpected. Just a kind word of encouragement or a funny story about his shift. Those tiny moments when I wasn’t thinking about my son fighting for his life were my lifelines. Don’t get me wrong, I had the best support from my family and friends. The minimum drive for them to see us was two hours and most days I had at least one (often six or seven) people with me. Spencer and I could not have been more loved. John’s affection and care was a different form. It takes a brave soul to take on what we had in front of us and to John’s credit, he didn’t even flinch. I am a strong woman but those moments I couldn’t be, he was strong for me. He became my rock at the most unexpected of times.

After four months in the hospital, Spencer was finally released in May. He was still using a feeding tube, unable to do most things an infant his age should be able to do and on many medications but we were going home!!!!

I had decided that I couldn’t move back up north and drive the 2.5 hours it took to get to the hospital weekly. It would be much better for me to move down to the doctors I trusted and Spencer needed. John and I found a duplex within a few days of being told Spencer could come home and with the help of one his friends (not only was John a Godsend but his friends were too) we moved in the middle of the night while Spencer was sleeping. It was during this move that our lives were again turned upside down. I called to check on Spencer often that night. Me: “How is Spencer?” Nurse: “He is fine, still sleeping. How is your move going?” Me: “Very good, almost done.” Nurse: “Good choice with the new results, right?” Me: “What new results?????” Nurse: “Well his cancer coming back”. I don’t know what I did or how I looked. I think time stopped for me. John and Denny found me by the car and just knew something was wrong. I don’t blame the nurse, she was new, just got on shift and didn’t know they were waiting to tell me when I was finished moving. I don’t think any way was a good way to tell me.

Yes, Spencer’s cancer was back, soon, too soon. This time in his liver as it often goes there next with this cancer. He still got to come home but we were back at the hospital for two days a week for IV chemo treatments. When the first had no affect, his oncologist tried another. These chemotherapies were meant for adults, not babies. They were hard on Spencer. What little hair he had quickly fell out. He gained even more weight and slept for only short periods of time. The chemo was harsh but it was not working and the tumors, three small cysts, were growing.

We were referred to Mayo Clinic to a specialist. Another person God sent our way. This surgeon is one out of only a handful in the world who can perform a procedure called radio frequency ablation. The procedure requires heating metal rods to extremely high temperatures and basically burning the tumors out. The surgeon measured the tumors and went a tiny bit above their size to make sure of complete removal of them. I am still in awe of this and it’s success. After only a few hours, Spencer was out of surgery with three bandaids. You read that right, Spencer was again cancer free and only had bandaids with no seeming discomfort at all! 24 hours in and out. Are you starting to believe in those miracles yet?

So here we are today. Spencer is still cancer free. He is on no medications whatsoever. Not a one. He shows no signs of ever having a stroke. He eats more than I do some days, he smiles and laughs often. Is naughty and sweet. The most lovable boy you ever have met. It has been a long long road. He had IV chemo for a year after the last surgery as this cancer is aggressive and fast growing. He also took an adult form of tumor suppressant for two years after this surgery. Because of all these factors, he is smaller than the average eight year old but not terribly so. He is however extremely mentally challenged. He does not talk but for a few words. At least any language I know. He has many autistic tendencies that prohibit us from most public functions and get togethers. He doesn’t play, ever with toys except to spins wheels on cars. He has no real friends because he doesn’t relate to other children on any level. The bottom left lobe of his brain is completely dead, no function and the remainder of his brain often gets it’s paths crossed.

You can’t tell by looking at him that he ever went down this road. His clothes hide his many scars; his heart holds none of them…

I am and will always be his eyes and ears, his voice in this world. I am honored and proud to be his mother. He can’t be “fixed”. He is who he was meant to be. A happy, healthy extraordinary little man who is very loved and wanted just the way he is.

So, here is Spencer’s story, his miracle. You don’t think angels walk among us? Think again, my friends…think again.

Hello, My Friends!!

I cannot believe how long it has been since I last posted! Wow!

Life is good; actually life is great and grand. I will be honest here about why I have been MIA recently. I was not healthy, mentally or physically. I could see some of my issues coming through in my blogging and realized I needed to make some changes. Grant you, nothing horrible is wrong with me (well, nothing that can't be prevented), I just was stressed and decided to take some control over that stress.

The stress I refer to stems from many things. Some I can control and some I cannot. Spencer's disabilities can weigh on my heart very heavily sometimes, the company I work for is struggling and many days I feel overworked and much underpaid, finances (who doesn't have this problem right now) and of course, the good ole self image.

First, I am completely and totally addicted to my sister's cooking/baking blog. I have made the majority of her recipes and my family is eating the best food (quality and flavor) that they ever have. Once I started, I couldn't seem to stop and now the time and energy I take to make a great dinner isn't the task it used to be for me. I mainly made boxed meals on the fly. Very rarely am I doing this now, if ever. Because of my new found desire to cook with care, I also plain all my meals for the upcoming week, set out the recipes and shop accordingly. No more running to the store (believe it or not, grocery shopping is one of my least favorite activities EVER) every other night. I also bake something every Sunday night and take half to work (one way to make more friends!). I get over half the office asking for my recipes. This new me is still basking in my baking sunlight with a very large smile.

I was also addicted to the weight loss drug, called Hydroxycut. I have a few extra pounds on me that I am always going to lose but don't get around to doing. Nothing a few days a week of exercise wouldn't cure but like a bazillion Americans, I think I pill can do it for me, so I spent too much money taking two pills three times a day. This pill in the beginning is fantastic. Large amounts of energy, you feel hungry, yet when meal times roll around, you eat little. This pill cost me hours of sleep I needed to function and eventually started to make me feel really crappy. Headaches, stomach aches, insomnia. Took me over a week to come down from the withdrawal, which was horrid, but I feel so so much better now. I feel normal as someone like me can feel! Woohoo!

I also have a hobby again. You may have guessed it right away. Amphibians! Spending time taking care of, watching and learning about my frogs has taken the place of stress many times over the last few weeks. I am enthralled, enthusiastic and downright smitten with my pets. I might have to sell some body parts on ebay to help finance my obsession but a great obsession it is!

Lastly, my largest stress source. My light, my purpose,my Spencer. I can only do what I can do for him and do it the best I know how. When I take the other stress factors out of my life, I can focus more on him and without distraction. How much more positive I can be is amazing.

Thank you for caring and stopping in, even though I didn't respond. I have a lot of catching up to do!!!

Sorry for the poor quality. This is scanned. Our family picture over three years ago. Seemed fitting!

Ignorance Is Not Bliss

I do not like being a dough head. I usually don't add this to my list of qualities when turning in my resume. Lately, I have been feeling this way much too often for my comfort zone and was hoping my fellow bloggers, family and friends could enlighten me.

I am feeling terribly overwhelmed and ignorant about Spencer attending school in the next few weeks. I have received a few letters from the traditional kindergarten teacher, welcoming Spencer to her class. Well, Spencer will not be attending her class per se, he will be in the cognitively impaired classroom full time. Is this just a formality? Also, there is an online list of school supplies for each classroom. Kindergarten is listed and then cognitive disabilities for 4-6 grade. Which list is for Spencer? Open House/registration is dated but not next to cognitively disabled. Do we attend?

I feel so out of my depth, so I emailed Spencer's ld teacher from the school website asking these questions and apologizing for my ignorance. I have only met her once, this last spring, when evaluating Spencer for the ld room and if we and the teacher thought he would be a good fit. I instantly liked her and she said Spencer would be a perfect fit for her room. That is the last I have heard from her and wonder if I should have done or should be doing more. I realize this is "real" school and not the Early Childhood program where much hand holding was done with parents. Am I overreacting? You can tell me, I don't mind. It might be just what I need to hear. Overprotective parent, maybe? I am slightly, ok a lot, OCD; is this a factor? Oh, heck, Jesus take me now!!!

Also Spencer just had an MRI, goes for a consultation with his neurosurgeon this next Monday, I will explain more later, has therapy (which I need to take off work for) every Wednesday morning, has an eye appointment the second day of school and needs a physical by a certain date. Calgon!!!

Welcome to not only being a parent of a school age child but a special needs one. Is this overwhelming panic typical and will it become less overbearing as I get used to it? Do I need a large and herbal smelling chill pill?

Please advise...


At the times when I feel like I am drowning in life, I look at pictures of my three heroes. Left, my gone but not forgotten nephew, Colin, center, Spencer and right, my nephew Sam. This was taken Christmas morning in 2003. Three little boys with more on their shoulders than ever should be. Makes my whining seem petty and then I stop!

Looking Back

I must break down and admit that while my sweet little niece Abigail was here this last weekend, I experienced a small twinge of baby fever. I have always loved children and imagined myself with as many as four young ones running around underfoot in a house full of chaos and laughter. I have extreme patience with children where I often have none with adults. They never cease to fill me with wonder and awe with their innocence and ability to make you forget the rat race outside your door.

Will I be able to give Spencer the time and energy he will need as a special needs child if another child, a baby, needs some of that attention too? How will we afford another child when I feel a terrible guilt now that my boy has to go to daycare every day? Will I love this new child as much as I love Spencer (being my firstborn and the love of my live)? If not, would it show? So many questions enter my mind. Questions that when you get right down to it, really are necessary but irrelevant when you are talking about a child. I would think that the many rewards of having another child certainly outweigh the questions above tenfold. No greater gift has God given us than the love of a child for you to nurture and love back.

I took a walk down memory lane and scanned some pictures of my sweet baby Spencer. These are some of my favorites taken before he was diagnosed with cancer and life was a little simpler for him.

This horrible polaroid of Spencer,taken maybe an hour after he was born, got me through the night after his birth. After they gave me something to help me sleep and wheeled my boy into the nursery, I slept with this photo in my hands. I would wake up every half an hour or so and just stare at it, making sure this wasn't a dream. Immense relief and more sleep would follow.

Three generations: Myself, Spencer and my dad.

Melancholy

I sit here practically in tears. When did I become such a cream puff? I really am not a crier nor much of a person who finds empathy in her heart often. This used to bother me and I would wonder why I was a cold person. As time went by, I realized I just don't react as others may with terms of endearment or displays of tears or in some cases screams and tantrums. I am me. I do things at a slower more moderate rate and that is ok. I hold things in for a bit and process them on my own to deal with later. Sometimes much later.

So why I sit here so sad is new and foreign to me. I keep thinking what is wrong with me today? I am forlorn and reflecting. Have I maybe finally grown up a little? Why? How? Who did this to me? Can I take a pill to get rid of it quickly?

My brother, Chris, and his wife, Michelle along with my sweet and beautiful niece spent the weekend with Spencer and I. I have blogged about Chris joining the Army and how proud of him I was and am. The weekend went much much too fast because it was one of the best times I have had in a long time.

Chris went and grew up on me! Ok, he is 26, but still will forever be my "little" brother. He has always been a natural comedian and an attractor of many friends. This has not changed. What has is his sense of character, his responsible attitude towards life, his quiet confidence in himself and the love of his new wife. He is an amazing daddy and his pride for his daughter shows in every smile he bestows on her. His wife is his motivational support and allows Chris what he needs to not only be himself but keeps him grounded and focused. I had the opportunity to get to know Michelle a bit more and believe in time, Michelle and I will be very good friends.

We talked for hours, went to the pet store and oohed and aahed, played a really fun game called Munchkin, you must try this game, and Chris and I searched for frogs in the backyard (he loves frogs also and used to catch and raise them). Abby be bopped around the house (she is 1) and yelled at us in her adorable deep voice when she wanted attention. I think she speaks the same foreign language that Spencer speaks and possibly was even swearing at us!

So why am I sad? Partially because over the last few years, life has gotten in the way and Chris and I haven't seen much of each other. Partially because I think Michelle and I have much in common and could spend a lot of time together with our wee ones hanging off our knees. Mostly because of the lost time we haven't, as siblings, taken to get to know one another as adults and in a few weeks, Chris will be deployed to Germany for 3 years, with a tour in Iraq possibly starting in November.

I am thinking that once in a while, life needs to take a backseat and we/I need to stop and talk to the ones that mean the most to me/us. I don't have many regrets in life. I just don't allow them to happen, simple as that. I am finding now, I do have some, I haven't been aware of them is all...

Have any of you ever felt this way? I am sure I will be better tomorrow. In fact, I feel better just typing this out.

John is in PA for a work trip and took my camera, so I have no pictures of this weekend's fun to show you. I have these super cute pictures of Chris as a child instead. I love this brother of mine!

A Lesson in Drunk Driving

**WARNING** You may find the pictures below disturbing. While not gory, they are certainly not pretty. Imagine someone you care about, love even, being in an accident like this and what the result would be.

These are the pictures of Pam’s best friend and her brother’s car accident. This accident was caused by the fact that Naomi, the driver, had far more than the legal blood alcohol content in her bloodstream. Add in an argument and you have a lethal combination…

Think on this for a moment, if you will. The different emotions this may bring to your train of thought right now. Sympathy, anger, exasperation perhaps? Are you pointing your finger at Naomi for her foolishness, her carelessness? I think that if she were conscious right now instead of in a hospital bed fighting for her life, she may feel the same. I think the people with her that night will be riddled with guilt for a very long time on how THEY could have prevented this, if only…

Here is a lesson for all of us to learn from. While there may be those of us that feel we have the right to judge Naomi and point our fingers at her in disgust, I feel we should reserve our judgement, as hard as it may be, and pray for her instead. Swallow our harsh words and instead use this as a wake up call. If not for you, then possibly someone you know.

Drinking and driving is so easily avoided and so foolishly done by many people. People who think they are in control but are in fact in control of nothing. In an instant, you can change so many people’s lives. Cause so much heartache and grief. Take away someone’s sunshine or destroy a once whole and happy family.

This post may hit home harder for some than others. Faith, is on my mind when I say this.

I guess what I am trying to say here is this. We all are in control and the bosses of our own selves. What we choose or choose not to do at any given moment, depends on us and us alone. While our reaction may be based on what others have said or done around us, we still make the decisions on what our reactions will be. Naomi chose to drink and drive and the harsh reality is she may lose her life as she has known it for that decision. While it would be so much easier to judge her for this, I choose to instead learn from it and hope beyond hope she will too. I want to put my positive energy towards her recovery and the mental recovery of those who think they could have stopped her. My heart goes out to all of them…

Prayers Appreciated

For those of you that pray, please say a prayer for Pam and her family. Pam's brother and his girlfriend (who is also Pam's best friend), were in a terrible car accident earlier this week. Pam's brother is recovering and has been released from the hospital, her friend, however, is not fairing as well. She has some head trauma and is not functional enough to know how severely she was injured. She has a long recovery ahead of her. She also has a young daughter that could use some prayers. I am hoping Pam won't mind I posted this, but I firmly believe in the power of prayer and know every one can help. Their names are Chris and Naomi.