Saturday, May 11, 2013

Chemo, Camp and Medical School

I realized far too late that I did not post the MRI results here.  I put it on Facebook, but not here, and I apologize to anyone who was worried.  The MRI was clear, and Scarlett is set for another 2 months.

She had chemo the next day.  It appears that the chemo is getting more difficult for her to tolerate with each dose.  She had a hard time this round - fussy, clingy, nauseated and constipated.  She has not been able to play on her own or entertain herself for a few weeks, meaning that we are constantly trying to find a way to get something done with her in one arm.

The next day, we headed out to Camp Okizu. This was our second time visiting this camp, and I am so glad that it is available, and that we are able to get ourselves there in the midst of treatment.  I grabbed the wrong memory card for my camera, so we unfortunately have no pictures, but a good time was had despite the photographic evidence.  We met several new families, and reunited with a few from previous camps.  This time, Scarlett was not the youngest, nor the most recently diagnosed.  She was, however, one of very few receiving chemo while at camp - we had to keep the pre-measured syringes and latex gloves in the camp refrigerator for the weekend.

Despite the chemo, Scarlett had fun scooting around the dining hall, getting passed between all the wonderful volunteer counselors and snacking on camp food.  We had hoped that she would get a chance to swim in the lake since it was so warm, but thunder and lightning came out of nowhere and forced us inside for the rest of the day.  Campfire was inside, but we still got to make s'mores in the big stone fireplace, so all was well.  

My favorite part of camp is the most difficult part - parent discussion sessions.  Having a chance to share, and hear others' stories, is fascinating, emotionally exhausting, and empowering simultaneously.  Each family's story is unique, but so many of our paths have had the same landmarks.  I (obviously) enjoy, or feel relieved and eased by, sharing what we have been through, but many do not.  To have to dredge up all the feelings that a child's cancer brings is difficult, and many choose not to participate or give minimal details for self-preservation, and I can understand that, too.  I so appreciate hearing how their families came through it, as it gives me some perspective on where we are and where we might be one day.

Camp was not our only chance to rehash it all this week.  On Wednesday, Chris and I made a trip to Touro University in Vallejo to speak with osteopathic medicine students about our experiences with pediatric brain tumors.  A parent from camp who is a student there was looking for other parents to join her in sharing with the medical students some of the issues that patients and their parents encounter.  We presented to a lecture hall with two other kids' parents about some of the particularly unique details of Scarlett.  Each of us had a few images from our kids' treatment - including Scarlett's MRIs and 3D CT scans - which got audible gasps throughout the talk.  After we finished speaking, the professor came up to explain to the first-year students a few of the terms we had mentioned - turns out we have a pretty advanced medical vocabulary!

The second half of the presentation was a Q and A with the students.  Interestingly, they wanted to know much more about the emotional and psychological toll on our families than the medical side.  It is hard to explain how helpless it feels in the first days of diagnosis; all three families dealt with different issues, and handled it differently, and none of us could say that we had done it "right".  In the end, I felt like in just the three stories they heard, the students were given a very god idea of the patient side of this kind of diagnosis.  I enjoyed doing it - if there was some kind of speaking circuit for this, I'd be there.

Now, Chris and Scarlett went to visit his mom for the weekend while I stayed home to catch up, both at home and work.  In texting back and forth, I've heard that Scarlett is not having a great time, as she tossed her last pacifier out of the car at some point.  Missing the first two pacifier weaning nights may be the most generous Mother's Day gift I ever receive.


MC said...

So glad you had fun at camp! Scarlett is a champ. Thinking of her everyday. Your last paragraph had me laughing.

April said...

I am glad you are missing the paci problems as well. I am also glad you enjoyed the camp and speaking to the med students.

Kristyna said...

Have you two looked into toddler wearing? I know you probably don't need another subject to research on your plate right now but I think it couls be great for the clingy phases! There are all kinds of simple to use carriers for bigger toddlers and some that accommodate parents who may or may not be plus-sized. No learning to wrap 3+ meters of fabric required, buckles are simpler!

If you want more info PLEASE message me on FB (kristyna hulsey) or even check out I'm not affiliated at all but the lady who runs it isw a sweetheart and very helpful, plus they have a rental program so you can try before you buy.


Dana said...

If you find that strong odors (or even not so strong odors) cause her to be nauseated....keep some slices of lemon handy in a zip-loc bag. The clean scent helps disguise odors and relieves the nausea associated with it.

*Having had cancer treatments...lots of them*