And they lived happily ever after...

So....it's been awhile.

I burnt out fast thinking about the details of Eli's situation.  Although I was and still am very in tune myself (as is Rob) with what we are dealing with....the thought of regurgitating it all again kind of gave me a stomach ache.  The interesting part is that the initial trauma of being told he had cancer, then surgery, chemo, etc pulled me towards writing and sharing it out.  It was cathartic and soothing.  It made me feel better.  Now it's flipped. I don't want to talk about it anymore.  Well...at least not all the time.  We are not defined by this.  Eli is not defined by this.   And although this year has changed us forever...it's not tragic.  We have a happy ending.

On August 30, Eli was deemed 'cancer free' and officially in remission.  Like a full circle the same woman that told us he had cancer was the same woman who told us he doesn't anymore. Katherine Hopkins.  I'll probably remember that name forever.   In the same ultra sound room.  We sat in that room again...and sobbed again. This time just releasing all the anxiety and stress out of our bodies. 

Right now, writing this, tears are streaming down my face thinking about that moment.  See...I'm not a religious person.  I think when I die my body will rejoin the earth and that will be that.  I believe the same for my son.  I don't believe we get to see each other again after our hearts stop beating.  You can call me a pessimist but i call it a realist. I can't help myself.  This is what I've thought since i can remember contemplating it.

I would have been broken forever if he rejoined the earth.


We will not miss this hallway in the Childrens
Oncology unitat OHSU but are so thankful
for the doctors and nurses that fill its halls 

 I don't believe i could have maintained my marriage, my job, my soberness.  Being told Eli is cancer free has pushed all of those negative things away.  We have a beautiful boy. Rob and I have a beautiful friendship and a marriage.  My job seems easier and my career will continue.  Life will continue.  I can breathe again.

So onward we march.  We will try to hold onto what we have learned so we can apply it the next time life throws a curve ball.  My 18 month old son has taught me more than anyone other than maybe my parents. I am more educated because of him.  I feel empathy for others more because of him.  I understand sorrow more because of him.  I know life is life and we need to just enjoy it more because of him.

On October 9th he is scheduled to have his port removed.  This should be a 1/2 day procedure and he should be recovered in a few days. And then on Oct 22nd he returns to daycare 3 days a week.  Rob and I agonized over whether to send him back or not.  Eli is SO social though and Rob and I can not give him what he gets from his school.  The interactions he has with other children there is so good for him and he desires it so much we can not deny him that. The teachers have creative and fun activities that we would never think of or do.  Plus...we are too lazy at the playground to interact with all the other families there. ha.  yes...I'm kinda lazy.  Like I've mentioned before...I don't pretend to be some super mom.  I am just Eli's mom.

Exhausted from his last chemotherapy visit

Eli will have  life-long follow up care.  But the visits will decrease with time. After his port removal he will have the same series of tests he had August 30th every three months for a year and a half.  That is blood work, urine analysis, chest and back x-rays and an ultrasound.  Since he had a kidney removed, blood and urine tests will be done to check how well the remaining kidney is working. The x-rays and ultrasound to make sure no tumor is not regrowing.  At the end of this first phase of recovery...in Spring of 2014...he will probably go down to 2 visits a year until he is 12.  The longer the time since treatment, the less likely the cancer will return. At this point, monitoring for late effects becomes an important part of follow-up visits. The blood tests will make sure that there have not been any changes in the functioning of his kidney.  Eli still has high blood pressure from the removal of his kidney.  Specifically his diastolic pressure is still way too high. This is the amount of force (pressure) that blood exerts on the walls of the blood vessels as it passes through them when the heart is resting...or between beats. In people with high blood pressure, the small blood vessels in the vital organs are most affected over time. These blood vessels become scarred, hardened, and less elastic, which means that they are more likely to get blocked or rupture (leading to organ damage or even organ failure).  Basically we are going to keep a VERY close eye on that left kidney and trying to control that blood pressure with twice daily drugs. Right now the doctors say, "it looks beautiful" and to expect to see it grow.  By the time Eli is an adult it will likely be twice the size of what it would have been, possibly even larger.  Unfortunately this means no contact sports for Eli ever.  I wasn't bummed when they told me he couldn't play football but cringed when they added soccer to the list.  But baseball and basketball were not on that list...so Rob says we are good. hahaha.  He can just play fantasy football like his dad. 

Wilms tumor survivors do have a risk of developing another type of cancer within 15 years after the tumor was first diagnosed. The most important risk factors are whether treatment included radiation therapy and/or doxorubicin.  Eli received neither of these because of his age.  He also will have little to no emotional baggage from this experience.  He is too young.  Other than keeping himself  away from direct hits to the stomach and seeing the doc a little more than other kids, he should be able to live quite a normal life.  We are so grateful for that. 

Over all...we. are. so. lucky.  SO. lucky.

Kissing his "kicked cancers ass" present. 
This is "Becker" the bear. 
He is name after the hospital (Doernbecher) that saved Eli's life

So that is where this "journey" ends for now.  I will never be able to repay what I received from my family and friends this year.  The amount of love that was just handed to us still overwhelms me. Oh....I'm crying again. Gosh...this has been such an incredibly emotional experience.  Being given prove that the people you have known throughout your life really, really love you...genuinely... and sometimes after years of not seeing each other...is wonderful. And makes me cry every time i think about it.   I know such amazing people and even if I rarely get the opportunity to say it...i love you.  and thank you. 

Your hearts protected mine from crumbling. 



Strong enough to finally walk!





Just a normal little boy enjoying summer



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

Through the looking glass

I couldn't remember.  I had to tell the story through pictures.  This is why i took them.  I knew I would forget....

 Friday, April 6th

 The morning of surgery.  Eli was unphased and happy, even with an IV in.  I wish I could have said the same for myself. Both Rob and I had traded off crying in the bathroom the entire day. Luckily Rob's parents came in and they helped distract us. 

  

Eli was set for a 4-5 hour operation at 2 PM.  It was closer to 4 before they even got started.  After handing him off to a complete stranger at the surgery room door I turned and asked the receptionist in the waiting room if there was a bar in the hospital.........she reminded me I was in a children's hospital and "No, there is no bar." and i replied, "Ya...i guess it would be the saddest bar in the world."  I'm certain she thought i was a freak.

Directly after surgery and already sleeping back on his stomach.  

 

Eli lost his right kidney, 4 lymph nodes, and a 2.25 lb "nerf football" size tumor in his belly.  But the best news that came out of surgery was that we had just caught it in time.  Although trying to push out of the kidney it had not done so visibly.  He was eventually diagnosed officially with Stage II Wilms. 

 

 

Night 1 post surgery

Buddy sleeping with the help of a morphine drip

 Saturday, April 7th

Mama & Eli

Dada and Eli

Eli had an epidural in his back, an IV in his hand, his arm, and a catheter (to accompany the epidural cause you don't have the muscles to push pee out)  We were lucky that his breathing tube came out right after surgery.  It did leave him wheezing for a few days from it though. 

 

 Easter Sunday, April 8th

 

Nothing says "Easter Dinner" like an overcooked cup of cafeteria macaroni and cheese and ice water.

Eli waking up and watching Baby Einstein.

Monday, April 9th

We all feel better with an iPhone in hand.  Eli hadn't had anything to eat or drink since the previous Thursday...almost 5 days.  The IV was keeping fluids in him.  They told us to be careful reintroducing him to foods as we didn't want to rupture anything that had been sewn together inside him.  But as soon as he could handle his bottle again we were on the road to recovery and a pink slip out of the hospital.

We gave him 2 oz of white grape juice in the middle of the day and he grabbed the bottle with vigor. He also screamed bloody murder when we made him wait 1/2 hour for the next 2 oz.  Doctors orders.  

Tuesday, April 10th

Oh what an amazing difference some actual fluids can do!  Eli was able to have one IV and his epidural and catheter removed. Only one "tube" left!  It was amazing to see him go from barely moving to smiling and playing so quickly.

The amount of love from family and friends was and still is the way our family didn't lose it completely. We will never be able to repay this generosity but will always, always appreciate it. Balloons are Eli's favorite too!

Rob stayed at home with his mom this night.  Eli and I partied.  He did so well with the fluids his final IV was taken out and he was moved completely to oral meds.  If i ever see these eyes again when he's a teenager he's grounded...but this night I laughed with him.  I didn't care that it was 3 am and he was bouncing off the walls.

 

Wednesday, April 11th

First bath in well over a week. And given by two of the kindest nurses in Portland

Eli received his first round of chemo at almost 10 PM at night.  His "port" surgery was scheduled for the next Monday so this dose was given through IV.  He hated it but was very tough. 

Chemo

 

Thursday, April 12th

Word came at about 9 AM this morning that Eli was getting discharge papers!  We were free to go home!!! This is the good boy helping take stuff out to the car in a hospital wagon. 

Leaving the hospital for good after hours of various discharge paperwork and scheduled appointments.  Thank you Doernbecher's.  Thank you so much. 

 

Waiting

It has taken me awhile to process the time we spent in the hospital with Eli.  I can't seem to really recollect a lot of it.  I'm sure it's a mixture of being in shock added with days upon days of not sleeping or eating much.  It is not comprehensive and will probably be disjointed.

 And it's time for me to be able to use this writing in the present...to document the adventure and share our day to day going-ons and show everyone how Eli is today..not to try to hash up the memories. My brain tells me to write what i can down and then to let it go.  It doesn't want to hold onto this memory any more.

................................................

Nothing about our time with Eli in the hospital was ok. We hated every minute.  And we couldn't believe we were there...that this was our baby.  Both Rob and I have faced deeply sad things in our lives...both separately and together.  But we could not have imagined how stressful being told our child...our tiny 13 month old baby has cancer could be.  It's something neither of us have had a lot of exposure to.   My mom and Rob's dad both have had patches of skin cancer... and although worrisome..not malignant. We both had a few friends who had battled more deadly versions.  Two who kicked it's ass and one who was taken...way too early.

Other peoples tragedies can be a great tool and resource in life.  They can change behaviors, make people more educated, more accepting.  They can help with coping with ones own hardships.  Knowing fear helps face it.  Fear is the path to the dark side, after all.  Knowing all the hard and horrible things my family and friends have not only faced but taken on and defeated (or at least made peace with) has influenced my ability to be strong.  Their ability to not completely fall apart, and often to come out the other side better...is awesome and inspiring.  Life can really suck bad sometimes. Not caving to that is hard to do. And of course...I've seen the opposite too. People having something horrible happen to them or develop in them and they fold inward...sometimes letting their fear and pain take over so much that they are incapable of living and being productive members of society or...in the saddest of situations... choosing to end their lives.  And I've seen something else...something negative happens to someone and they overreact to it.  Making themselves consumed with drama and it, in turn, controls them.

Life is about your reaction to it.



..........................................
After our initial diagnosis in that ultrasound room I got really dazed and I felt claustrophobic.   Because it was going to be a few hours before Eli could be admitted into the hospital I decided to go home and pick up some overnight things.  They encouraged us not to leave...fearing our shock would get us into a car accident.  Rob stayed with Eli but I had to get out of there. I had to be alone for a bit. I got home without any problems but the moment i walked into our living room I collapsed.  The TV...DJ Lance and 'Yo Gabba, Gabba' was still on pause from when the pediatrician had called. All of Eli's toys were strewn about and everything was exactly how it was before we got this news.  I lost my mind at that moment. The overwhelming desire to have our reality be a dream was all I could think about.  I started to scream. I started to cry again.  I sobbed and sobbed and sobbed.  Maybe for 20 or 30 straight minutes....i don't remember.  I wanted to break something.  15 years ago I would have.  But now all i could do was sob.  At that moment I've never felt so helpless in my life.  Nothing I could do could change the situation...and we didn't' know what the situation was even...all i knew was that my 13 month old probably had cancer.  What. The. Fuck.

Sitting there at that moment, clenching Eli's blanket and stuffed animal...i thought he was going to die.  My mind convinced me for 30 minutes...or however long i cried... that he was already there. That it was all over.  Our only child was going to die before he learned how to walk. Before he learned how to say 'mommy'. My sobs were out of fear that reality was going in that direction.  Nothing.  Absolutely nothing in my life prepared me for that feeling.

But reality doesn't change just because you want it to. You have to face it.  Nothing gets better until you stand in reality and say, "Ok.  How do we handle this?  How can we move forward?" Living in delusion is not an option for me.  Even if reality is grim.  I don't want bullshit.  I want to know the facts. 

That thought eventually crossed my mind and when Rob called telling me a room had opened up and Eli and he were heading to it, I picked myself up and grabbed our toothbrushes and some sweat pants and drove back to Doernbecher's.   We were going to beat this shit...whatever it was.

.....

10 South is the cancer ward of Doernbecher's. It's a locked unit and you have to use a phone outside in the hallway to call in to have them open the doors.  Immediately upon entering you have to wash your hands with soap and water.  Every time.

I found my way to Eli's room.  They were waiting for me and I was briefed on how things worked...shift change at 7 AM and 7 PM.  Meds at 9 AM and 9 PM.  Playroom to the left and kitchen across the hall. Sadly we were immediately put on isolation because of Eli's Hand, Foot, and Mouth episode from the week before and we were told that Eli had to stay in the room and if we left we would have to go immediately off the floor.  Any food that came into the room could not be taken back out. All visitors, including all nurses and doctors, had to be in full gown and mask. Everyone but our family. 

Eli was eating and drinking just like normal so they kept him off an IV that first night.  A team of doctors came in and explained that more imaging would have to be put off until the next day. All three of us slept on the "couch" in the room that night...although i don't think Rob or I actually slept.



Waiting for information on the first night in the hospital



Eli being a good boy

The next day more doctors, more nurses.  I was exhausted...and starting to mentally fade.   A cat scan was ordered for Thursday morning as he couldn't be fit into the schedule for Wednesday. It would verify if indeed surgery needed to happen.  They team of doctors already seemed sure it was necessary but needed to know if it needed to happen immediately or if he could be scheduled for a week or two.  That night they put him on one IV.  He was given some nasty chalky substance that would help "dye" his insides for the cat scan.  We mixed it with apple juice and he drank it right down.  No complaints.  He is such a good boy.

The next morning Eli was masked and because he was hooked to an IV i held him in my lap while Rob pushed us in a wheelchair down to the imaging room. 

masked

Going to imaging

Eli was given some sort of cocktail that make him really calm and it worked.  We were given xray aprons and I was asked if I was pregnant.  I laughed. The view from the imaging room was amazing.  It was an unobstructed view of all of Southeast Portland.  Our part of town.  I never knew I'd see our neighborhood from that view.  I looked down and Eli was obviously drugged up.  He was staring at a Spider-man sticker that had been given to him.  Staring through it really. And then...very quickly...he was pushed into the doughnut hole of a machine and then we were done.  He rocked it again.  Not a peep or a squirm. Have i mentioned what a good boy he is?

And then we waited....and waited....and waited. Much like we had been doing for days now.  And then...sometime in the early afternoon...the entire team of doctors and nurses stopped by. 

They information was overwhelming...but at least we were moving forward. "The tumor is inside the kidney. It's large. He will need surgery. Immediately.  It's scheduled for 3:00 PM tomorrow.  It's an add on surgery so you are lucky in that regard because it's Easter weekend. We still think this is a Wilms tumor but we will not know until after surgery and until after pathology is run on the tumor.  He will lose his kidney. We will also not know what stage the cancer (if it is indeed that) is in until surgery...and absolutely until pathology comes back.  We do not think it's spread but some imaging shows some signs of the possibility.  We will know after surgery.  We won't know if the tumor is favorable or unfavorable until pathology. Because it's a holiday weekend we will be lucky to get pathology on this before the middle of next week. Welcome to hospital time."

and then a pause and gently,

"We will figure this all out.  Eli has a very good chance judging by what we see on his imaging. We will help you learn about Wilms and about the surgery, and chemo and about living with one kidney and life after.  It's all very doable."  And somehow...their tone made me almost believe them. 


The waiting had just begun...

   ....but at least we were starting to get answers.