Excision

• Chemo Summary
• Mark your calendars 
• Pre-Op visit

A few people have been asking about his chemo schedule. Of course the doctors like to tell me to "pencil it all in" as everything can change at a moment's notice. It makes it hard to plan things some times, but really, what else are we doing besides focusing on getting better! 

In an easy summary, here is what it looks like, and all chemo treatments are inpatient. We usually go in Tuesdays but we never really know when we will get to go home. 

• Week 1: Doxorubicin/Cisplatin; 2 nights in a row plus recovery. 
• Week 2: Off; clinic visits for blood draws and check ups
• Week 3: Off; clinic visits for blood draws and check ups                                                  
• Week 4: Methotrexate; one 4 hour infusion starting at 4pm, blood tests every day at 4pm until methotrexate has cleared from his body. 
• Week 5: Methotrexate again, same as week 4.   
• Start all over again. 

We are currently in our second week 4, he was infused with his methotrexate yesterday at 4pm. Now he gets tested at 4pm every day until he clears. Because it took so long to clear the first time, now they give him even more IV fluids to wash it all out. Methotrexate is damaging to the kidneys, and they need to make sure all is functioning well before they send him home.  Here is a super exciting twelve page essay on it if you want to read more on it.  

Such a gross colour, after an hour or so, Atticus starts turning yellow as well. Quite unpleasant. 

This week we also visited OHSU for the pre-op appointments for his upcoming limb salvage surgery. We saw the pre-op nurse practitioner who gave him the once over and asked a bunch of questions to make sure he was well enough for surgery, then we visited the surgeon himself. We always enjoy visiting with him, he is so gentle and kind and you can tell he really loves what he does. We have also heard such great things about him from one of the surgical nurses before Atticus' biopsy, and others who have worked with him. He never talks over our heads, explains things so we understand it, shows us pictures and makes sure we are comfortable with what is happening. 

Save the Date! Atticus gets his new bionic leg! 

I told you the chemo schedule above... but remember, I said write it in pencil! We are in methotrexate right now, he will get another dose next week Tuesday. Usually, we would go in the following week (which would be the first week of April) for the dox/cisplatin. However, it's easier to re-schedule chemo than it is to re-schedule a surgeon and operating room; so our case worker did some rearranging so that Atticus' blood counts would be up and he wouldn't be neutropenic  by surgery date. The first week of April we will be going in to get new test results and scans for the surgeon to look at before his surgery. When the surgeon approves Atticus to continue treatment (they guess around two weeks) we go back into Randall and continue the chemo. More on surgery and chemo another time.  

We have just been hanging in there. Atticus is still trying to work on some schooling, visiting friends, and just focusing on getting better. The outpouring of love on my family the last three months has been amazing - even if you think it's too small or "not much" it always means so much to us and we are so grateful. From the "small" (just even a text or a funny video sent to me) to the extravagant, gifts left by grocery angels, we appreciate it so much and hold you all so dear to our hearts. 

I Wrote You a Valentine Poem

Neutropenic Fever

A week back home

Hair falling out

Time to shave the dome

Feeding Atticus on a 2 hour schedule

Setting my timers is a weird thing to do

He has always made his own food before

But gotta get that fat to stick like glue

Visiting the class

At Gammans park one day

The sun was shining

As we watched friends play

Wearing a yellow ribbon

A friend shows support

Presenting handmade gifts

The Love, they did not thwart

Friends in abundance

Brothers Peter and Ted

Took Atticus to the park

Until he was ready for bed

Friday morning, bright and early

To the hospital we arrived

Port access was a struggle

The day took a nosedive

Another late start, with all the rules

Chemo started 11:30pm

We slept through it all

Nurses - amazing - so grateful for them

Methotrexate this go

Not quite as rough on the belly

Gravity and urine, I just don’t know

We wait; Olympics on the telly

Emotional days, the clown was silly

Atticus always polite

Gave him some laughs

Much to Clem’s delight

Atticus is homesick

It’s been a long week

I see the girls as much as I can

A balance, working on technique

Waiting, waiting for those levels to go down

One more day, no just one more

We might go crazy

This is such a bore

Wendy the Fabulous

Works here in transport

Got me lunch and coffee and cake

She’s a stupendous consort

Free flowers at the door

By The Bloom Project

They reuse flowers!

Voluminous respect

My rainbow shoes

Brought me some cheer

Friend brought dinner,

Healing gifts, we hold dear

Tomorrow they say

We might get to leave

Valentines Day!

And a two night reprieve

Everything Sucks! is a Netflix show

Anneka’s proud! Watch, you will see

“Everything Sucks” is also our cry

We know it doesn’t… but... O.M.G…

Convivial

• We are home again
• A more "fun" trip to the hospital
• Pictures! 

It's hard to say that a trip to the hospital can be fun, because it's really not, and we still come home exhausted. However, this last trip with the fever wasn't as terrible as last time, as there was no surgery or chemo. Also, it's a much different place on the weekdays than on weekends! 

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Wednesday we had a few plans, some visitors were going to come over, I was going to go out to dinner with a couple of girl friends. It all changed quickly, as it will with a chemo patient, when the fever hit. 

We had to cancel our friends visits, but I told other friends where we were now. One friend and her boys came to visit Atticus while my friends took me out to dinner. Wendy knows all the cool places nearby since she works at the hospital, and she suggested The People's Pig. Tiny little place I never noticed on Williams... but so, so good! You gotta try it. 

Before I left, a gentleman in a Mario hat came by our room and said there is Mario Cart in the theater at 6:30. Perfect timing for the boys to come visit, so after Atticus ate his fancy hospital meal of fresh salmon, they went upstairs to play Mario Cart. 

Thursday was pretty chill, my parents came to visit and I went with my dad to go get a loaner car from the Saab place as we didn't know how long my car would be in the shop, and they didn't want to leave me without transportation. 

When my mom was sitting with Atticus, volunteers came through with hand painted canvases a local artist paints for people in the hospital. Atticus got to choose one, and he chose this beautiful dog picture by a Portland artist, Donald E Brown, with a get well card.  Go check out his works, buy something from him, tell him thank you for thinking of the kids at Randall! #artheals 

The Ronald McDonald House cart came by with treats and other things. Another volunteer came by from Child Life and she found him an x-box set up. Speaking of which, if anyone has teen friendly x-box games he can borrow, he might appreciate that during his stays. We also got a menu of movies so we tried to pick out some funny ones to watch together. 

 We had another cool nurse (well, I haven't met any un-cool ones yet!) named Joshua, and he really connected with Atticus. He was funny and sweet and told Atticus about a summer camp they are a part of during the summer for kids with cancer, so Joshua spent time telling Atticus about that, and convincing him he wants to go. He also made Atticus his very popular milkshake, because we are now trying to fatten him up. 

On one of my walks - it reminded me of a cool steampunk white blood cell. 

By Friday, his labs looked good, the doctor came in and said everything was looking good to go by noon! So we packed up (how does one bag coming in add up to so many things to carry out!) and we got to go home to the family. It was my parent's last evening, my mom made another delicious meal and we said our goodbyes. It was so great to have them here with us during this rough first couple of weeks, and helping with the girls and food and car... Thanks, Mom and Dad! 

Neutropenia

We are back in Randall right now, a semi-unexpected trip, but they did warn us this would most likely happen, and they remind us it's only our first fever admission! 

So let's all gather around and sit in a little circle and talk about science. Because it's interesting, that's why. 

There are four types of white blood cells - neutrophils are the most plentiful, and are very important in the immune system. Neutrophils are the paramedics of our bodies, driving around and making sure everything is going well. But they are pretty cool too because they have this magic ambulance that's not limited to the road of your circulatory system and they can transport through the walls of veins into your tissue. So when you get a cut or bruise or get some bacteria or a virus, they come swooping in with their capes and save the day and heal it. 

https://leafjelly.deviantart.com/art/Neutrophil-Kero-592345017

Chemotherapy works by killing off rapidly dividing cells, and cancer grows with rapidly dividing cells. But along with the killing the bad, it also kills off the good rapidly dividing cells, and that includes those neutrophils. After a treatment of chemo, about 3-7 days, the neutrophils will start getting low. This is one of the reasons we go into clinic twice a week after the chemo days, to check his blood counts and liver function and a whole list of other things. Last week he had to get re-hydrated, so they accessed his port and plugged him into hydration, drew his blood, tested it all. Monday, they drew his blood and he showed up as neutropenic, meaning his cell count is below 500, the goal is to keep it above 1000. 

When Atticus becomes neutropenic, we start watching for fever, because it could mean he's sick, or has an infection that his body will not be able to fight off on it's own. There is a whole list of rules of things to look out for, fever being one; any fever equal to or greater than 100.4F twice in 12 hours, or 101F once, to call the clinic!  Fortunately Atticus at his age is able to feel and communicate when he's not doing so well and take his own temperature. 

Dad and I were out driving my car to the shop yesterday morning and on the way back, I got texts from my mom and Atticus saying he had a 101 fever. We got home and I called the clinic and they said come in ASAP, so we did. 

Here's the fun thing (no? Not fun? Wait, cancer isn't FUN?!). It could be something, it could be nothing. Prompt care is the most important. Fortunately, we live pretty close to the hospital and my parents had a rental car so they were able to deliver us to Randall. 

The nurses had to access both sides of his port to make sure there was no bacteria anywhere in there. They draw blood and start hydrating him through IV. The next part of essential treatment is a full blood work up, and to start antibiotics right away, so they added that to his IV as well. 

They then tell us that a room is being cleaned on the fourth floor and we will be admitted for 48 hours, which leads us to Friday noon-ish or, you know. Whenever. 

During this time, in the Super Hero Lab, they are growing all sorts of cool things in his blood and trying to figure out what's going on in his body. It could be something. It could be nothing. We always hope for the nothing. I mean, besides the cancer, we already know that. 

They also need to watch his fever, make sure he's not getting more sick, make sure all his vitals are in good order and general upkeep on a neutropenic patient. Tomorrow they see if anything exciting grew in 48 hours and make sure he's as healthy as could be expected and we go home. 

With more rules, of no mountain climbing, no rock concerts, no opening day at the hit movie. All things that sound pretty horrible to me too, so that won't be a problem. 

He is suffering from some Mucositis, again, to be expected with this treatment, but not fun. 

This is definitely an easier trip to the hospital, he is comfortable, able to move around more, cognizant of his visitors and the goings on. We have one of our night time nurses from before, we just love him, and a new nurse named Joshua we met today who is also super cool. 

Now we all learned about Neutropenia and why we have to go to the hospital when fevers and kids just normally go together, but with chemo patients... its a hospital stay! 

On my walk today. Okay, Universe, is this a sign? 

Info from here, here, here, here and from my own paperwork from Randall.