Wilms Warrior: Hangin' Tough

On April 17th, Eli had his port surgery, or what is actually called a portacath. Being completely clueless on cancer, chemotherapy, heck...even general surgeries in general I had no idea what this was until I was told he was going to have one. Initially it freaked me out. My son becoming part droid. But after talking in depth with the head of Eli's pediatric oncology team, Dr. Thomas, and after seeing Eli poked dozens of times in his arms, legs and even his forehead for blood and for his first chemo treatment I came to realize how amazing this little device is. In fact...it's down right awesome.

His port was surgically placed beneath the skin in his upper chest, just below the collarbone. Ports are used to take regular blood samples and to administer chemotherapy, sparing Eli from rolled veins and painful pricks.

"port"

It works like this – the port is metal appliance that has a silicone bubble for needle insertion with an attached plastic tube - the catheter. The catheter runs from the port and is surgically inserted into the superior vevena cava (vein that carries blood from the upper half of the body to the heart) allowing the chemotherapy drug to spread throughout the body quickly and efficiently. Unlike a Central Venous Catheter, this is completely under the skin, allowing Eli to take baths, go swimming (although we don't really do that here in Oregon!) and overall be a normal little boy.

This was an outpatient surgery and we didn't know what to expect. We were told not to worry...that after our previous couple weeks this would seem almost routine. ya...right.........going back into the same waiting room that I had asked the receptionist just 10 days ago if "there was a bar" brought back waves of panic as we walked in. But my son snapped me out of it by rolling up to me in a little play car and smiling....even with the surgeon who was about to open him up behind him.

They called our name and we were escorted into the pre-op room which was just a large room separated by lots of curtains. Eli was stripped down to his diaper and given a gown. His vitals were taken and we were told he was going to get some "Happy medicine". They explained it would make him very loopy and was an amnesic so he would not remember anything. I asked, as I had been doing since the beginning of this, if they had any for mom. And yet again they thought i was joking.

Eli was so well behaved the entire time, and got excited when a volunteer brought him some toys to play with.

Playing with hospital toys in pre-op

One the medicine was given it worked fast. Within 5 minutes he was laughing like a drunk. Rob and I both agreed that if we ever saw him act like this as a teenager he would be grounded. But we were happy it was working now. We handed him off to the surgical team and went back out into the waiting room. It took about an hour. Everything went perfectly and we went to the recovery room. He was in pain, out of it, and crying a lot. He drank a large bottle of juice and about 15 minutes later projectile vomited it all back out and unfortunately all over his father. They said throwing up was common coming off of anesthesia. Poor buddy.

I rocked him for about an hour and a half and he slowly started to feel better. As soon as we were released we headed up to the oncology clinic for his 2nd chemo treatment and the first through the port. He didn't even flinch and we went home to rest until the next week treatment.

Eli two days after "port" surgery".

Eli and mama the day of port surgery. Eli is officially part droid.

cleaning battle wounds

Eli's port the day of surgery. The thread it through a small incision in his neck with an incision in his chest to "sew" in the actual vein

Once home Eli seemed to not even be phased....again. This kid is hardcore. We gave him a few days of Oxycontin but that was it for the pain. He kept himself entertained with all the amazing love that poured his way in the form of balloons, gifts, cards, etc. etc. My best friend...ah...who is kidding...my sister, Traci, sent him a card with his favorite animal (kitty cat) on it an some music that really confused him (and made his mother think about jr. high)....and yet...he couldn't stop. He opened and closed this card for at least 1/2 hour.

Mondays are Eli's chemo days. This is because Dr. Thomas is only in clinic on Mondays and Thursday afternoons. It also helps with allowing us to have normal weekends because the drugs are subdued and not causing irritation by the weekend.

Each time he needs a treatment we rub a numbing cream over the port access point which is a bump now in his chest. within a few minutes it's numb and they can "access" him with a needle and he doesn't even feel it. Seriously...modern medicine is amazing.

This is Eli when his port is "accessed"

Because we caught his cancer in stage two and because of his young age he does not ever need radiation. This is awesome for many reasons. He is given two drugs. Vincristine & Dactinomycin. He gets the Vincristine every week and the Dactinomycin every three weeks...so every 3rd week he gets both. The Vincristine is what mainly makes his hair fall out. It kills fast growing cells. Cancer cells and non cancer cells. It attacks them quickly and eradicates them. It keeps cancer from going crazy. Dactinomycin has more side effects and is pretty god damn powerful. It scares me that he he has it being injected directly into the vein to his heart. It's one of the chemo drugs that makes you nauseous. But again...modern medicine has found away around this. They give him an anti-nausea medicine through IV before he's given the Dactinomycin. And it works like a charm. The brief exposure i had had to cancer and treating it before Eli had throwing up involved. When you think of people on chemotherapy you think of two things (or at least i did).

1. Bald head

2. Throwing up

Eli has only thrown up once from chemo...and it wasn't much and he didn't even seem to mind.

Much of the money that pours into cancer research goes to improving cancer drugs...and man have they improved over the years. The residual side effects seem so much less than they were for patients even a decade ago. The nurse told me the anti nausea med that Eli gets is about 10-12 years new...and we are so thankful.

Eli's "computer". The syringe on the top of the machine is the chemo...the end of the tube is connected to Eli's accessed port.

To fully express how absolutely wonderful and humane ports are just look at the picture below. Eli is receiving Dactinomycin and doesn't even really know what is happening. He is no pain when this happens. His least favorite part is when they flush his port with saline. Apparently when saline goes directly into the vein some of it goes into the lungs and is absorbed by them, all in a split second, and people can actually taste the drug. He whimpers when they do this and sticks out his tongue. They assure us he's not in pain but that older kids have described this feeling and taste so they know it's what is happening.