Saturday, July 23

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.

9 comments:

Tanya said...

He is such an amazing kid and you are amazing for what you went through with him. I think it's great that you wrote this out-it deserves to be told!

Lindy MacDuff said...

Spencer is so fortunate to have you for his mother. May God bless the both of you always.

Samantha said...

Oh. My Word. You guys deserve a vacation.....i can't believe you two went through all that!

Sheri said...

It was terribly difficult to even write this all down. Been stuck in my head for too long. Thank you for reading about my little hero. He is truly amazing!

Jessica @ TheCrazyChaoticHouse said...

OH WOW! What an amazing story! I had no idea. I stop by your blog often but I have never noticed the little button on the side "Spencer's Miracle". I can't imagine what it must have been like for you to see your son go through all that. It brought tears to my eyes. thank you so much sharing and so sorry i didn't notice this story sooner.

Claire' Healthy Home said...

What an amazing story you have! Thank you for sharing it and YES I do believe in miracles! I believe you are living with one ;) Claire

overtiredmum said...

I came to have a look around from SkyWatch and got drawn in. I have an 8 year old and I sometime forget how lucky I am to have such an easy ride. I must remember this next time she has a door slamming episode.

An amazing story, that's not easy to read but I'm so glad that I spent the time here. Good luck to you and the tadpole for the future - you sound as if you deserve every miracle you get

xo

Sheri said...

I am so grateful for your kind words and support, really I am. Thank you for taking a moment to read this, it's from the heart and I appreciate you all.

Brittany said...

What a miracle! My 9 and a half year old son also had brain surgery as a baby and also is thriving now, defying odds against him. Hug your miracle man and enjoy him! What a lucky mom you are. And to think I only came here for a potatoes on the grill recipe!