Yesterday was a big day for Riley…it was IVIG infusion day but this time we were able to save ourselves a trip to the city and infuse here locally at the Kaiser Santa Clara Oncology facility. What a huge difference! Being able to head up the road 20 minutes as opposed to an hour and a half felt like a whole new world…it felt like we made that transition from critical health care to health management. Same infusion, same product…totally different feeling. A big shift. A shift towards our new new new normal? Hmmm…something like that. A first glimpse into what her life will be from here on out…possibly for the rest of it. Every 3 weeks.
When it came time to place her IV catheter the nurses laid out a warm blanket and asked me to place Riley on it. I was confused…”I’ll just hold her” I said. “Well this way she won’t move…we’ll wrap her up tight and only leave the arm free that we need to stick.” was the response. Chris and I smiled at each other as I explained to them that she wasn’t going to move, she’s easy, she’s used to the this…she will be still and not make a peep even if they need to poke her multiple times to find the vein. Pretty sure they thought I was nuts but kindly obliged. As always Riley sat calmly watching as the nurses maneuvered the needle under her skin in attempt to access one of her tiny vessels. It took a while but Riley was patient (of course). Once the line was set they were both amazed. “You weren’t kidding about her being calm.” We just chuckled…no no…she grew up with this stuff. It’s as if she doesn’t fear these things because she knows they help her, totally aware of the necessity and trusting that the benefits outweigh the discomfort. She gets it. Now those nurses do too.
We were then moved to the treatment space, we found ourselves out in the open, no longer in an isolated room to infuse but simply set up in an area filled with reclining chairs next to IV poles just as you see when people are administered chemo on TV shows. Strange. I sat down in the designated chair holding Riley, directly across from us lay a girl maybe 12…maybe 14, it’s always so hard to tell the age of sick children. She was curled in a ball on her side in the same style recliner, wrapped in blankets receiving what I assumed to be a blood transfusion. Sigh. It’s hard to see. She looked so tired, sad, self-conscious (as with any teen) but obviously a seasoned veteran at this type of treatment. Not. Fair. The only thing a girl her age should be seasoned in is gossip, sports and maybe one of those british boy bands. Reality won that round. A curtain was to our right and on the other side another little girl was watching Frozen…ha…just when we thought we had a breather from “Let it go” we were within ear shot as it distracted her. Crap. That movie…one whose soundtrack is played daily as Miss Presley “ice-skates” through our home may sting a little now when I hear it. It didn’t at the time, Chris and I actually joked and lip-synced along to “fixer-upper” but I’ve learned lately that things don’t always hit you in the moment. They file themselves away to knock the wind out of you later, often when you least expect it. Later a little boy set up shop in the seat next to us and like a pro lifted his shirt so the nurse could access his port and start his chemo. He immediately picked up the Wii remote and was full swing into a baseball game. Gahhh. These kids man. So adjusted. So used to their shit-sandwich circumstances. It’s beautifully tragic to witness.
While I was observing them (there’s no way to avoid it, you’re all steps from each other) I realized they were also observing us. Gosh. What were they thinking? I scanned the face of the teen…maybe her pained expression was because of what just sat down in front of her. A baby. A baby obviously so comfortable in a hospital setting, unaffected by needle sticks and lines and treatment. I bet she didn’t think we’d been dealt a fair hand either. Later when the mother of the boy to our left asked how old Riley was and what type of cancer she had it hit me that this was once again our life. Every 3 weeks we were going to be in a chair surrounded by different children, different faces of pediatric illness fighting their own battles. We’ll swap stories or sit in silence wondering what plagues each others young. Reality. The little boy had been diagnosed at 4…14 months later he’s on what they hope to be his last round of chemo but he will never fully be in the clear. We know how that feels. How many stories are we hear over the next 18 years? How many children and parents are we going to meet? Will it ever get easier? I hope so. No wait…I don’t. I don’t want to get comfortable with such unfairness. I don’t want to get “used to it” or immune. Hmm. Future Alissa’s problem. 😉
Riley was a trooper throughout the entire infusion as Chris and I took turns holding her…that lil chunk is heavy! It was so great to be pulling into our driveway just 15 minutes after leaving the hospital, don’t get me wrong I LOVE the team at UCSF and I did feel as though we were cheating on them a bit but the length of the day was so much more manageable, both time and emotion wise. Unless we run into any unusual symptoms life with Riley should be nice and boring (medically speaking) for the next 3 weeks until she meets with the BMT team again at UCSF.
The onslaught of phonecalls, texts, emails and messages I have received since brain-dumping my stir of emotions on the blog has been overwhelming in the best way. The continued support, words of encouragement and the sentiments thanking me for my words have meant more to me than you will ever know. xoxo