Tumor in the Femur

Because it's fun to say and we need to say fun things.

Comestible

Irene Veldstra
IMG-7621 (1).JPG

The food cravings are strong with this one. Sometimes we tease Atticus that it's worse than a pregnant woman's cravings, with sending me or Anneka out at all hours to hunt for a very specific food for him! Of course, having cancer and going through chemo is pretty heinous so of course we tend to spoil him a little more and try to make what is a miserable experience just a little happier. 

What makes Atticus happy, you asked? What is great therapy for him during these miserable inpatient chemotherapy days? Big piles of meat, that's what. 

We have our Amazon Wish List, which is currently updated with foods and restaurant gift cards. 

 Checking out the menu but got a happy surprise visit from a cute dog! 

Checking out the menu but got a happy surprise visit from a cute dog! 

Russell Street BBQ is fairly close to the hospital, I was able to walk there easily and pick up his food. So now he has discovered how delicious smoked brisket is and other scrumptious southern food... now I'm really in trouble! 

Dickey's also makes some pretty great brisket and ribs, and I can get them by the pound and freeze them in meal sizes for quick cravings! Gift cards to Dickeys are available on Amazon

 Dickeys. YUM dickeys.com

Dickeys. YUM dickeys.com

 

This is where you all come in... so many of you ask how you can help, and this is a pretty big way you can make Atticus' life a little bit better, happier, and his tummy fuller. Go on to our Amazon wish list and send a digital gift card, or a Russell Street BBQ gift card for when he's in the hospital! 

Atticus also has a Paypal that you can send money to that he can use to buy more games on his laptop for hospital times, or to turn into treats for himself as well. 

 PILES O'MEAT

PILES O'MEAT

Commencement

Irene Veldstra

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. 

IMG-7181.JPG
IMG-7185.JPG
 Photo by Wendy

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.
DSC_7926.jpg
DSC_7919.jpg
DSC_7951.jpg
DSC_7958.jpg
DSC_7978.jpg
 Emily McDowell Studio

Emily McDowell Studio

Promulgate

Irene Veldstra

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

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.

1528574455086.JPEG

 

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. 

1528643355070.JPEG