Commencement

One of Atticus' biggest goals was to make it to 8th grade graduation and his care team made sure it happened! 

His surgery was May 22, his surgeon cleared him for chemo June 1, his graduation was June 7, and the Randall team scheduled him for his chemo at 9am on June 9! We are so grateful for our team and the research that shows how important life events are to sick kids and making sure they are still able to take part in them. 

At school, 8th grade graduation is in the evening, and the 7th graders set it up, serve the food, decorate. It's always a lovely evening with remembering and honoring the eighth graders. Then, on the last day of school, there is the Rose Ceremony, the first graders honor the eighth graders by giving them a rose. 

Here are the photos from the graduation on the evening of June 7. 

Photo by Wendy

Rose Ceremony on last day of school, as told and photographed by Krista: 

“It was such a treat to see Atticus at graduation! I was really overcome with emotion. I wish him so much good health and strength. And you too, mama. I can’t imagine the extent of the strength your life requires. I wish you all of it.

I wanted to tell you a couple things I saw between Atticus and his 1st grade buddies, particularly little blonde Julian. The two buddies approached Atticus when both first grade classes were invited to join 8th graders after the 8th grade group photo. I asked them if the boys wanted a photo with their buddy and they said they did. They leaned in for the photo and I took a picture. Then Julian looks at Atticus and gives the thumbs-up sign. Atticus looked over at him and put his thumb up too. I thought it was such a sign of support, optimism, and hope between those boys. So positive and I just about melted.

Then as I was standing there, Julian looked at Atticus a long time and says, “It must be hard.” Atticus quietly looked at him and Julian says, “It must be hard to be sick.” Atticus nodded and smiled. I think he might have appreciated Julian’s honesty and empathy. It was such a sweet moment.

A bit later, I saw another amazing thing. Maybe you saw it too. I watched Julian run, full-speed, into Atticus’ arms for a big bear hug. I have thought of that hug many times in the past 24 hours. It was a big, long, uninhibited, tight squeeze. I was so very touched by that loving enthusiasm directed at your son.

I felt like the ceremony was for everyone, of course, but it was especially for Atticus. No question, he was the star that day. I’m not certain he knew it, but I know it to be true.”

Emily McDowell Studio

Promulgate

June 8 2018

The not so great news was scary at first, as told to us by our surgeon who didn’t seem too concerned but knowing that our goal was 90%... hearing 50% sent our hearts to our stomachs. Today we went back to Oncology on the third floor of Randall to get ready for chemo, but first we discussed the pathology results.

As previously discussed, they take the full tumor and affected femur out of Atticus’ body. Along with that they take some tissue - muscle surrounding the bone which is called the margin. They want “good margins” so anything touching the tumor and the cancer cells would be gone, out of his body.

They even resected the biopsy scar as they didn’t want any chance of leftover cancer cells that may have been in the biopsy scar left over. The surgical intern joked that they did a really expensive plastic surgery for free to Atticus. Atticus snarked back “well, I’m not so sure about that, you just traded for a bigger scar!”

Once the bone and tumor is out, they send it to pathology and they “slice it up like a loaf of bread” and inspect it and do all the things to find out how well the tumor and the cancer responded to the chemotherapy. They are looking for necrosis- death of the tumor and cancer. Back in January when Atticus was first diagnosed, they laid out a plan for us: 10 weeks in chemo. Limb Salvage Surgery. Find out pathology.

Good Responder = 90% Necrosis: 19 more weeks of chemo

Poor Responder = less than 90% Necrosis: a longer chemo treatment with more chemo meds added, up to 60 weeks.

https://goo.gl/q46oFq

When I heard he was a poor responder, my mind immediately recalled that plan and I was heartbroken to think we have another year or so in chemo. What would we do about high school? How bad is this going to actually be? What’s happening?

Fortunately, more research is coming out to show that the long plan for poor responders only added more toxicity and didn’t really do much for killing off the cancer. 

The other issue was margins. The surgeon has to make a decision in surgery to preserve tissue and veins and nerves, so there was one spot near the tumor where the margin was a little closer than what they would prefer, but it also helped preserve the function of the leg. It also means that the osteosarcoma may have a higher chance of returning.

The Plan:

1. The plan now is to continue on with the ongoing chemotherapy treatment as if he was a good responder. This will be our last cisplatin treatment which is awesome because cisplatin is the WORST. Doxorubicin will now be daytime treatments on the third floor and methotrexate will continue to be inpatient treatments on the fourth floor, they are guessing early to mid September he will be done with chemo. The reason they continue on with chemo is to make sure any loose cancer cells that may be floating about in his body are dead gone and won’t be reproducing.

2. On the scans, they have seen nodules in his lungs, they are very small and the plan was to just keep watch on them. Before we found out the pathology on the tumor itself, the nodules on the follow up scans hadn’t changed, so they thought it a good sign, as in, they didn’t grow or shrink, so they most likely aren’t cancer. Since he had 50% kill rate on his tumor, now they aren’t so sure about those nodules, as maybe they are cancerous and just didn’t respond to the chemo. The tumor board met and decided they will continue to just keep a a watch on them. They are too small to try to find in surgery. So it’s a watch and wait on those.

3. Our oncologist has sent the pathology (pieces of the tumor) to a place called Foundation Medicine.  This is now beyond my scope of understanding so if you are interested in genomes and targeted therapies go check out their website. I don’t have the bandwidth at this point to read about it. But hopefully, they will be able to figure out some extra medicines that will work on Atticus’ particular cancer in his own body.

4. They first told us we will be seeing the oncologists for at least ten years. Getting scans, follow ups and all that fun stuff. She then told us Friday that no, it will be the rest of his life. The good news is they will be able to spot any cancer much faster since he will be seeing an oncologist and getting scans for the rest of his life.

June 12.

We are currently still in Randall Children’s from his Dox/Cisplatin chemo. It’s not going well at all, he’s very ill, and still in quite a bit of pain from his surgery, especially nerve pain in his foot that they are trying to get under control.

Fortunately, however, it was his last dose of cisplatin! We will be happy if we never have to see cisplatin ever again. Remembering from the calendar that I made - he has had doxorubicin and cisplatin together, two days in a row, inpatient. Now, there will be no cisplatin and his doxorubicin infusions will be in clinic for two days in a row, but not inpatient! So we are starting to see some light at the end of this dark tunnel. 

Enucleation

Atticus' Surgery is coming up very quickly! We have a lot of scans and tests and follow ups this coming week, so it's going to be a busy one! It has been nice this past week to chill at home, the home health nurse came by to do draws instead of going back to the hospital twice. It's almost been like a mini stay-cation. I got to hang with the girls more and Angelena had her Olympiad, so I enjoyed seeing her take part in that, as I've missed so many school things the last few years while I was working long evenings and weekends. 

As we work up to the surgery date, I wanted to make another list for you all, as we are asked what people can do for us! 

• Smoothie Patrol for Anneka and I
• Extra care and loves for Angelena
• Meals, you can sign up or if you aren't a sign up type person, just bring it by. 
• Food gift cards: Panera, Subway, Panda Express, Grub Hub delivery. Atticus seems to have the weirdest cravings at all random times and I'm never quite prepared for it! I don't know what the situation at OHSU will be like or if he will have an appetite for awhile. Or, maybe he will be hungry again!          
• Massage for Anneka                                                                            

 Magical Fairies have curated a perfect team for me as well. These are the people who are showing up behind the scenes, and all amazingly gifted in their own ways. More on that later, but if I refer you to one of the team mates, it is because they have more energy and resources than I do at this time. 

Osteosarcoma

I know how much you enjoy my little science lessons, and I enjoy giving them! As always, please remember I am not a doctor or scientist of any kind. I just try to simplify this disease and process to the best of my ability, which helps me and I have had reports that others find it helpful to be able to see and understand what we are going through. 

Cell division - pretty! 

There are a lot of unknowns in this whole story, there are many questions and so many non-answers. Sometimes we just don't know. Cancer doesn't really come in a nice tidy list and schedule. Blood counts and chemotherapy and surgeons and we are all humans and human bodies do whatever they do sometimes. During this treatment, we have been asked several times to sign papers for research, which we do. They are still studying osteosarcoma, and since he has it, we might as well help advance science! 

Osteosarcoma: 

Remember back in the day we learned about cells and they reproduce to make new skin and bones and we made jokes about in seven years we will be a whole new person? So that's where we start. Cells. They divide and make new stuff. Happy little cells. 

Art by Anneka Veldstra

There they are, happy dividing cells, doing their thing. Dividing. Making some bone. Everything's fine. It's normal. Everything is cool. 

In pre-teens and teenagers, sometimes these kids grow really fast, and the cells are making new bone and skin and trying to keep up with puberty. The bone cells are dividing as they should, making new bone, having a party and super excited about making this nice tall teenager. Usually, these cells have to go through Customs and Border Patrol and get checked out along the way, pass some toll booths and make sure all these cells are paying attention to the rules. In all of our bodies that don't have osteosarcoma, the bone cells have all followed the rules. 

With Osteosarcoma, those cells have just blasted through customs and the toll booths and they are bringing friends. 

Miserable osteosarcoma cells. Art by Anneka

When we grow, the cells produce rapidly. Cancer cells also reproduce rapidly, but they have really lost their way, making mistakes as they try to build bone, but they have become completely out of control. One of the consequences of out of control cell growth is cancer. This cancer is osteosarcoma. 

Those cells then start making a tumour. A lot of times, we think of tumours as things to be removed, like brain tumours... get that sucker out of your brain! It needs to be removed. And that happens a lot - like with brain tumours, we don't just get our brains removed. We aren't zombies. 

Unfortunately, with the bone cells going all wackadoo trying to make bone, they've really messed up and what was supposed to be nice shiny new bone, is now actually a tumour itself. It's not a tumor that just grew on top of a bone and they can open him up and scrape this tumour off. 

It looks a little like this: 

check out more super cool osteosarcoma pics here: https://goo.gl/5Z3Phw

By this point it's causing a great amount of pain and his bone is weak and fragile. Atticus walks on crutches because of the pain and also because the bone is so weak, they don't want him loosing balance or breaking it, which can then spread the cancer cells quickly through his body. 

They immediately start the chemo treatment, as chemotherapy kills off those rapidly reproducing cells. Get those cancer cells under control before they start taking over the whole body. They want to see some serious necrosis of that tumour. 

After 10ish weeks of chemo, the treatment plan calls for a limb salvage surgery. That is when they will take most of his femur out, send it to pathology and they see how well his tumour has responded to the chemotherapy. 

Since his tumour doesn't affect his entire femur, they will keep his hip joint and proximal (upper) femur in tact. They cut the cancerous bone out, and replace it with this really cool thing: 

Growing prosthetic! Because Atticus is not done growing, they replace his distal femur with this growing implant. He will walk lopsided at times as his right leg grows, then they do minor surgeries and extend the implant and even him out. They can only extend it little bits at a time because of the muscles and nerves and ligaments need to grow slowly to catch up to the implant. 

When he is finished growing, the growing prosthetic will be replaced with a more permanent, stronger femur implant. 

Click on picture for more (gross warning) info at the Bone School

The tumour and it's bone go to pathology and the super scientists cut it up and look at it under microscopes and then report back to the surgeon and oncologists and let them know how the tumour has responded to the chemotherapy treatment. 

If he is a good responder, chemo lasts until around autumn, and if not, then it goes on for much longer. As always, one step at a time. One day at a time, sometimes, we just need to make it one minute at a time, because sometimes, we have some really, really difficult minutes. 

Keep us in your thoughts, remember to share Joshua's GoFundMe on all of your social media channels as I am currently unemployed to care for my son and of course daughters who are all struggling in their own ways. This is more than a full time job for me, with overtime and some pretty big emotions. Thank you as well for all of the fun little care packages and cheerful gifts along the way. It helps make a really difficult time a little brighter. 

~Irene