The C Word

Thursday morning bright and early, Atticus and I arrived at the OHSU hospital to get his biopsy done. We were both very anxious and he hadn't eaten since before midnight, so neither of us were doing so well. As per typical Irene, we got lost a couple of times and didn't really know what on earth we were doing. Fortunately, I gave us enough time and the staff was very friendly and helpful. 

Pre-Op Atticus 

They sent us to pre-op and Atticus prepared for the operating room, and we sat and waited, while numerous people from the surgical team came in to say hi and ask us questions, mark the correct leg, and make sure all was well. It was time for me to leave, and I went to get a coffee and wait in the waiting room. After surgery, the surgeon came to see me and went to talk in a private room about several different things, surgery went well, and I should be able to see him soon. 

A bit later, the nurse called telling me I could come see him, Atticus was just waking up. The recovery room was tough, very emotional for me, even more emotional than I was earlier, seeing him being wheeled off into the OR. He was in so much pain and hungry and thirsty. It was heart-wrenching for me to see him like that, and we waited awhile in recovery before we attempted to go home - he had some ice chips, jello, water and medicine and we waited until he was feeling a bit better before we left. 

When I talked to the surgeon after the biopsy, he did say it looked as he suspected- an Osteosarcoma. Yesterday, Atticus' Oncologist called and she had just checked in with pathology and the first tests came back and it was definitely cancerous. We all suspected as much and were preparing for the news, but it was still difficult to hear it for real. She told me he would be getting his port-a-cath in on Friday, the 19th and they would be starting chemo straight away, keeping him in the hospital overnight or the weekend. 

My brother Joshua and sister in law Brittany were here Thursday after we got home from the hospital, helped clean my house, organize all the food, and brought us take out. It was so lovely to see them and I appreciated them just jumping in and working on what they saw we needed.  My parents show up on the 18th, so it will be good to have them here for the first bit of all of this, and helping with the girls. We go see the oncologist on Thursday and she sits down with us and tells us the treatment plan and answers all of our questions. I know a lot of you have many questions and when I am on the phone or meet with doctors, I ask my questions, but then a friend will ask another question, to which I don't know, because they didn't say, and it wasn't a question I thought of. So please be patient with me again, I don't know everything, I am trying to digest the information as it comes to me. But for now, we know it's cancerous and chemo is the treatment. 

We are worried for the process ahead, but I hope it all makes more sense on Thursday. For now, Atticus is still resting comfortably at home, sore from the surgery. Thank you all for the support this past week, all of the delicious and wonderful food for my family; the notes of encouragement, the cards in the mail. We are so fortunate to have you all in our lives, supporting us in the different ways you can and are able. 

What we do know

First, I know that I have the most amazing humans in my life. Yesterday was better than Christmas! We had so many boxes come in from all of you - so much healthy, delicious, beautiful food from our shopping list! It meant so much to us and made us all feel so astounded and loved. 

This was only midday and I was already so surprised! More came in after I took this pic! 

A family member sent a case of puffed millet for Angelena - as her shirt says- she was very happy! It's already made breakfasts a little easier on both of us, thank you. 

Anneka and Aidan sorted foods in baggies and ziplocs; Angelena lunches for days! She just has to grab one in the morning and toss it in her bag. This is an incredible stress reliever for me as we are usually panicking in the morning wondering what on earth to put in her lunches. 

Beautiful meals have also been delivered, which we appreciate as well. I shouldn't hear "there's no food in our house" for a very long time! Thank you all again. 

Updates on Atticus: 

We meet with the surgeon at OHSU who will be doing the biopsy the morning of Wednesday, January 10, and his biopsy is Thursday January 11.  

He will have more scans next week on Tuesday and Wednesday. We don't have details on times or when results will be in yet, but more to come. 

We don't know.

We don't know when the biopsy will be.

We don't know when his PET scans are. 

We don't know when his next MRI is. 

We don't know when all of the results from those will be in. 

And so we wait. Waiting is hard, and harder still when I know everyone wants to know what's happening and what the word is and what happens next, and there are questions pouring in. As our oncologist said many times, one step at a time. We wait for the phone call from OHSU to tell us when to come in for the biopsy. We wait for the other phone calls to tell us when to come in for the other scans. We wait for the results. 

Many of you know I don't use my phone for talking into it, like, what phones were invented for. And I don't usually have the sound on... but now, here I am, keeping my sound on, and answering my phone even if the caller ID isn't from my children. It's all very strange, but look, huge steps for me! Phone calls from doctors checking in and changing pain meds, going to the pharmacist to pick up meds, waiting for other phone calls that I want to be sure I need to answer. 

So, for the last couple of days, Atticus and I have been binge watching The Office while I took down holiday decorations and put them away. I started the process of rearranging the living room so it's more comfortable and safe for Atticus to get around on his crutches. He is sleeping and resting on the couch as he can't make it up to his bunk bed, and I'm trying to figure out how to best make dressing, getting around, laundry a little easier on us for now. 

Many of you, either in Portland or long distance have asked how you can tangibly help, so please be sure to check out the links, as there are many different ways to help, and then I added the sidebar as well. 

And so we wait. 

Preamble

The last few weeks, Atticus had a sore leg, and as kids do, I thought it was a banged up knee or growing pains or something minor that will heal soon. Holiday break came and the kids did a lot of chilling, but with my days off, holidays, and their visitation to Washington, I was not able to make a doctor appointment. 

Tuesday, January 2, school started and it was my day off of work. I told Atticus I would take him to Go-Health after school, and we would grab a quick x-ray, of course still thinking maybe there was a crack in a bone, lets just figure this out and then go run errands. 

We got the x-ray and she told us there were some concerns so we needed to wait a bit for the radiologist to get back to us. Atticus and I watched videos on my phone until they came back and with some concern, told us that we needed to go to the ER; she would call ahead and let them know we were on our way. Atticus and I needed snacks by this point so we went over to Fred Meyer (across the parking lot) and grabbed a few snacks and off we went to the ER. 

At the ER they set us up in a room, and got Atticus all comfortable. Doctors and nurses came through, letting us know the process, taking a look at the x-rays, and letting us know they were talking to specialists (um, yikes?) who were also looking at the films. They ordered more x-rays and blood tests so we got that done too. Then they came back and said they were ordering an MRI. I was getting quite anxious at this point, but a friend came by to bring stuff from home and more snacks, the girls were supported at home, so we settled in for a long night ahead. 

The MRI was very painful for Atticus. They warned us of the noises and being still, but there was a large plate of some kind they had to strap to his legs to keep his leg straight for almost two hours, which caused him considerable pain. They started him on some morphine a little before he went in to the MRI, and he was able to ask for some more during the MRI. 

We got back to the room and waited again for some results. The doctor came in and talked to us about the tumor and cancer and a doctor at OHSU and a biopsy... I was exhausted, physically and emotionally, this was all so shocking I was unable to really understand or digest what she was saying, only I knew I was very scared. We left with paperwork on "your child and cancer" and that we would be getting a call in the morning from the Oncology department for an appointment. 

We got home about 3 am and we were able to get a little sleep. The oncologist office did call and set up and appointment for that day at 2:30. 

My friend Wendy, who works transport at the hospital was able to join us for the appointment with the oncologist. The doctor was great, she explained things really clearly, logically,  and kept repeating "one step at a time". She showed us the scans and explained the size of the tumor, where it was and why it was causing so much pain. It reduced a lot of anxiety for us, as we left the ER thinking for sure he had cancer; she answered questions, and we felt like at least we knew what we were doing next.  She ordered more x-rays on his other ankle and we picked up some pain meds from the hospital pharmacy, and was able to go home again. 

Next Steps: We are currently waiting for the office at OHSU to call us for an appointment to get the biopsy done. The oncologist also ordered more screens and testing to be done so we will have all of that to do next week as well. Then we wait for the biopsy results and the other screening results that will be done. We don't know about surgery, or treatment plans or anything until we get an official diagnosis.