Tuesday, December 28, 2010

A Day in the Life of an Oncology Kid +

Mason's morning started out really well. He went to his radiation appointment and was as happy as can be. He even pulled up his shirt for the anesthesiologist, and handed him the line to put his sleeping med in, as he joked about the color of the tube's cap; he had never had a red one on it before. Cute kid. 

After he woke up from radiation, it was off to Primary Children's for his oncology appointment.

I am so happy to say that I was FINALLY able to go with him! And if there ever was a perfect time to get well, it was today! Plus, I have lots of pictures because it ended up being a very long day, so be prepared.

For an oncology appointment, we start off by going to the fourth floor. We go into the Hematology/Oncology clinic, where Mason immediately runs off to the craft table to see what that day's craft is. This is his favorite part of these appointments, and he comes home with something different every time. Today, there were picture frame mats--large and small--glitter glue, and little trinkets to decorate them with. He wouldn't even wait to take his coat off before he started. :)

BTW: If you happen to be one of the people/schools/organizations who donate these little crafts Mason loves so much, THANK YOU! He talks about the crafts all week long until the next appointment, and always knows there will be something fun to look forward to.

Sometime during making his craft, he gets called back to get his vitals. He hates that this always happens right in the middle of making his craft, but he goes back anyway. Today, as soon as he felt the blood pressure cuff finish (the last vital to get), he ripped it off and zoomed back to the waiting area to finish his picture frame. :) 
As you can tell from this picture, his hair hasn't stopped falling out.

After his vitals, they give him a wristband and send us back to a room, which basically looks just like any other patient room you would see at a clinic.

The waiting can take pretty long to get everything done (sometimes 2+ hours), so at this point we begin to distract him from boredom at all costs. They even have a small train set that Mason knows to just ask for the instant the Child Life specialist walks in the door. She has it ready for him and everything, and he just sprawls out on the floor and plays. Today, we began with a portable chalk board he got for Christmas.

When the doctor comes in (it wasn't his regular oncologist today, or I would have gotten a picture), we talk about how he is doing and ask questions, etc. I had a lot of questions today, since I hadn't been in the past two weeks. The poor stand-in oncologist got to answer them all for me. Anyway, by the end of the time with the doctor, Mason ended up with two more medicine prescriptions, bringing his current total to somewhere around 7. Luckily, most of them are "as needed," because it's pretty hard getting him to take even the ones he likes. 

After discussions with the doctor, they drew some blood for testing from his port, and gave him his chemo. 

This is the first time I have been able to be there for this part, so it was kind of cool to watch. The Nurse has to wear a gown and gloves for protection, and she just pushes it into his port like any other medicine. For some reason, I thought it would take a lot longer, but it was very quick.

After that, we set to distracting Mason some more, while we waited for the blood test results, and to talk with the nutritionist about getting Mason to eat more. 

That was when the Nurse came in and let me know that Mason's blood levels were low, and that his ANC was down to 300! The ANC is the number of Neutrophils, white blood cells that fight infection. Anything under 1,000 means he has a high risk of infection (and not enough Neutrophils to fight it), and anything under 500 is extremely high risk, and can usually result in being admitted to the hospital. Last week they were at 1500, and now they are under 500. That really scares me!
They told us that he would need a blood transfusion, and they would also give him a shot of a Neupogen, which stimulates the production of white blood cells. 

So we waited for an hour and a half, for some blood to get in for him, and then Mason received his first blood transfusion, and we found out we both have the same blood type. We were taken to a little area set up for things like transfusions, where we were able to sit and watch TV while we waited. 

...and waited.

...and waited.

 I don't remember how long it took, exactly, but by the time we left the hospital, it was almost 5 pm, and we had gotten to his appointment just before 10 am. Most of that time was waiting and testing, but a good couple of hours were for the transfusion. Mason sat and either watched TV, or played with the train set on his lap. He did really well for having to sit still for so long!

While we waited, I took a lot of pictures, most of which ended up being of the blood bag. But since I don't know how squeamish some readers may be, I'll spare you those images...except for this one:

We all thought it was cool, because as his blood was being flushed through, it created what looks like a unicorn at the bottom of the tube. 

We ended up being the very last ones to leave the clinic, by the time Mason got done and was given the Neupogen. By the time we were packing up, they had already cleaned all the other sections.

Mason got a special green mask to wear home that does a LOT better job at keeping germs out than his regular one. We had fun trying to decide if he looks more like a Ninja Turtle, or someone from Mortal Kombat. :)

Now that we've been home for a while, he is doing much better. He has more energy than he did this morning, so I hope that's a good sign. We go back tomorrow after radiation to check his levels again and see how he is really doing. 

If you want to keep updated on Mason's ANC, and get a good idea of when the best times to visit are (when his counts are not under 1,000 please!), I added it to his stats in the right column. I got the idea from Briana's family blog, who's daughter is fighting cancer, too.

After today's scare, it seems like it belongs there!


  1. I love the look into clinic posts. :) For some reason, it's just nice to read about something that feels familiar and comfortable (for the most part!). Mason is a champ - what a good kid sitting there for so long. Transfusion days are the worst! So grateful for the blood, but man! are they long days! Hopefully the blood will help him have more energy and just feel better!

  2. I totally agree! It's a love/hate thing, being glad for the life-saving blood, but hating the long process.

    I'm glad you like these posts!

  3. I really love reading your blog, Pene. My brother-in-law, who is 15, was just diagnosed with Hodgkins Lymphoma and is going to be starting treatments soon. It's hard for me to deal with being his sister-in-law, I can't even imagine what my mother-in-law goes through. But it helps to read this blog and know that people go through it everyday and come out strong. So, thank you. I am so glad Mason is doing well. He looks like such a happy little kid. I love seeing the pictures of him smiling. He's got a great smile. Just like his mama.
    On a different note, I think Mason looks like a character from Mortal Kombat :D

  4. Dani, I am so sorry to hear about your brother-in-law! If I can help in any way, please let me know. If you want information or anything, I could probably give you some good sources. And we will definitely be praying for him and your family!