Monday, November 29, 2010

A Little Bit 'O News, and A Lot 'O Somethin' Else

Another appointment with the Oncologist today! Mason was not happy to go, but cheered right up as soon as we got there, and he remembered they have a craft table. He was asking me over and over, "mommy, can I go to the craft table? Mommy, can I...." I was answering him every time, he just didn't hear it in his excitement. Goofy kid. ♥

I got the pathology results from his lumbar puncture today, and it was NEGATIVE for malignancy! YAY! As long as there were no traces of the tumor cells in his spine, it makes the decision to put him in the "average risk" category final. Phew.

...aaaaaaand that's still all I know at this point. I am told by many that when it comes to Oncology stuff, I really won't know when anything is going to happen, until it is pretty much happening. That's basically what is happening, but it's still pretty frustrating. I signed all the paperwork today, and the Chemo Oncologists (is that what they're called?) are eager to get Mason started, so it should happen pretty soon. They actually wanted to start it all today, but have to wait for the Radiology Oncologist to get all the information, call me, make an appointment, and then they can schedule all their stuff around Radiology. The roundabout is exhausting.

Not that I'm too eager to have Mason go through chemotherapy and radiation, but I just want to know what to expect, so I can plan for it and know when to talk Mason up, so he's not too scared for it.

Since I don't have any other news to share, I thought I would share some pictures and random info.

1.) Dr. Riva-Cambrin stopped by to see Mason today in Oncology, and was really impressed with how much improvement he is showing (so were the Oncologists). What's more, he remembered all of Mason's information in the 2 1/2 weeks we've been gone, including remembering enough about his eyes, to see an improvement in how far to the right Mason could look without turning his head. When we were trying to figure the date he had his second surgery, he remembered that it was exactly three days before Mason's 4th birthday, and some other interesting details. After that, he STAYED to answer any questions and concerns we had after going home (so untypical of doctors). He wasn't getting paid for this visit...we didn't have an appointment or anything. Like many people have told us, it is true that he is very thorough.
Am I talking too much? I just really like that man, and I know Mason was blessed to have him as his neurosurgeon.

2.) Mase is now has a total of three buddies--four, if you count the very first one he lost sometime during his first surgery. I promise we're not just asking for more, but they give him one to show him about each new procedure he is having. I think we need to start bringing one to each visit, so he doesn't end up with 30 of them at the end of his treatments.

He loves them all, and they have really helped him to understand and be able to cope with his treatments. The middle one is the one that they put a pretend port in its chest, and stitched it back up. His real port is much bigger, but this one works for him to play with. He likes to get out his "doctor bag" and play with them, putting medicine (water) in their IVs and EVDs, and bandaging them up. Not only is it SO cute, but it's also therapeutic for him.

The buddy in the zebra gown is the one he got today. They accessed his port for the first time, so the Child Life Psychologist (or Therapist?) came in and explained what was going to happen. He understood, but I don't think he thought they were really going to do the same thing to him. He was NOT happy at all, especially since the port was so new and still sore, that it really hurt him, even after the area was numbed. He also got a flu shot at the same time, which made him even more mad.

3.) We started him in a program at the hospital, called Colors of Courage. It is for patients with chronic illnesses. They gave him a necklace with beads spelling his name. They have a bead that symbolizes each different procedure, and every time he comes to the hospital, he gets a bead symbolizing whatever treatment or experience he has. He got beads for all of his past experiences, plus three more for everything he did today.

The clear ones are actually color-changing beads, that represent each time he had any kind of tube inserted somewhere in his body (EVD, Chest, Catheter, etc). The bright green ones represent his IV inserts, although I decided to have just two, to represent the 15+ times he had IVs. He's got one in there for his birthday spent in the hospital, and the butterflies are for his three surgeries. My favorite, though, is the bear that represents a "course of steroids." :D

4.) Lastly, I just want to announce that Mason will be wearing a patch for a while, and will be keeping it on at home, for most of the day. It is helping his eyes get stronger and hopefully start to see the same picture again. I decided a homemade one would be cool, but totally FAILED at trying to put one together. He looked like a pirate, and it took two pieces of tape to keep the patch over his eye. WEAK! But my sister swooped in and made him a real patch, which he loves, especially because it is made out of Thomas material. This train is starting to take over the house!

Mason the pirate (complete with food, saved for later) vs. Mason the train-loving, patch-wearing chef.


  1. Simply Amazing! Thanks for the details about what is happening. Our love to you and Mason.

  2. Pene you do such a wonderful post for your handsome son! I love your 'human side'touch. It's wonderful journaling and you should consider having it printed into a book when you are done. It's also theraputic. You're a wonderful mom and Mason is blessed to have you and visa versa. Have a wonderful day! ♥

  3. Thank you! I'm glad you both like reading what's happening. :)

    And I love the idea of making this into a book! I didn't think about that, but I am going to plan on it. It would be so nice to have when this is all over. Thanks for the idea!