Bald is Beautiful

I've always liked shaved heads.  Bald heads.  Something about the boldness of having no hair has always been interesting and "cute" in my mind. Of course,  it was never my head that was bald.  

Because Eli was having weekly doses of Viscristine we knew it was just a matter of time before his beautiful, thick hair fell out. I envisioned finding clumps of hair in his bed or falling out in chunks in the tub or something.  It didn't happen like that at all.  In fact...it almost appeared that he wasn't losing his hair but it was thinning.  Slowly but surely it was coming out. 

At one of our visits to the hospital we saw some posters advertising an event that supported children's cancer research. It was called "St Baldricks".  And it was all about getting your head shaved in honor of kids who are dealing with cancer. I decided to look it up and see if it was something we'd like to participate in. 

When i did my research I started to understand the need for the support of this.  And that Eli's first head shave should most definitely be at this event.  

St Baldricks is the world’s largest volunteer-driven fundraising program for childhood cancer research, and today the St. Baldrick's Foundation funds more in childhood cancer research grants than any organization except the U.S. government. Since 2000, more than 240,000 volunteers have shaved in solidarity with children with cancer at events in dozens of countries and every U.S. state. Thanks to generous friends and family, these shavees have raised over $146 million for life-saving research, and each is a walking billboard for the cause.  Yup.  We were going to participate.  Well, my guys were going to participate physically and I monetarily.  I have a lumpy head......just go with that.

Although there are only 12,400 new cases of childhood cancer diagnosed each year nationwide, it is still the leading the cause of death by disease in children. Today, close to 80 percent of children will survive pediatric cancer. However, there has been little to no increase in survival rates of childhood cancer in the last 20 years due to the lack of access to new cancer agents. And the bittersweet reality for three out of every five children who survive childhood cancer experience long-term effects, some of which are life-threatening. While there have been significant advances in treatments for some childhood cancers, we have much more to learn before all diagnosed children will have the ability to live full and happy lives.

The main obstacle is funding. Hundreds of billions of dollars are spent each year on cancer treatment and research, but studies and drug development specific to pediatric cancers remain woefully underfunded. Unfortunately, new drugs and treatments are few and far between, largely because private companies lack the ability to generate significant profit from them. Drug companies have also been reluctant to develop products specifically for childhood cancer patients, in part because of the liability risk that they take when testing drugs on young children and because of the small patient population. 

Out of the National Cancer Institute’s $4.8 billion dollar budget, only $173 million, or just over three percent, is allocated for grants that have anything to do with pediatric cancer.  Children can’t vote, so adults must be their advocates to get more funding and government support to foster research specifically for childhood cancer.

And the event in Portland was to be next to the park that Rob and I were married in!  It seemed like we must go.  I signed Rob and Eli up and was excited that we could help raise (albeit a very small amount) a little something and get Eli's haircut without having to wait until it fell out. 

Two weeks before the event we found out our friends, Jeremy and Alison Ethridge were coming down from Whidbey Island, WA for a visit.  And Jeremy, who is a  childhood friend of mine, wanted to be part of the fun. For both of us, our connection to pediatric cancer before Eli rested in a mutual childhood friend from Iowa.  He survived that battle (BEFORE the no side effect, anti nausea drugs of today and during some of the most impressionable times of high school) and left a resonating impression on both of us.  Not because of his cancer but because of his will. I think for both of us being reminded of childhood cancer reminds us how much we are thankful for what we still have today.  Lifetime friendships. 

Jer was also really sacrificing a lot because as you can see he had long locks of green hair that were challenging for him to grow. Oh...and he likes bacon. Ha-ha.

Before

After

We had a great time.  Eli might beg to differ on the actual head shaving part though. He was very upset with us but the rest of the time he enjoyed.  The Portland Timbers (MLS soccer for you true blood Americans) were all there to get their heads shaved!  And so was the mayor of Portland!  Along with HUNDREDS of others.  It was awesome.  And only in Portland, at a children's cancer research event, do you get free beer tokens that you could ONLY use on beer.  (I actually tried to get a water and they told me, "tokens are only for the beer") And we aren't talking Miller or Coors.  They, in true Portland style, only had the best locally crafted micro brews.  Hilarious. 

With Alison at the beginning of the event

Jeremy, Rob and Eli are ready to get shaved!

He wasn't thrilled.

So if you are in the market for a charity or a place to donate or even want to shave your head with a purpose....  Please consider St Baldricks.  It really is something can help but only in great masses.  Eli does not throw up from chemo or even have to be doped up with opiate based drugs  because of a "pre" drug he is given that has been developed because of cancer research dollars from the last two decades. In fact, it has almost no side effects.   THAT....is a priceless thing...to patients and the family of patients. And 15 years ago...it was just in a lab somewhere.

Bald is Beautiful

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.

We thought he would be tired after treatments.  

We 

thought

wrong.

Eli is becoming a toddler after all.  His energy is limitless and he reminds us everyday not to complain about the little things. 

 He is "hangin' tough".

10 days after port surgery

a month into chemo