Cabin Fever and the Adventures of Flat Stanley

I remember Naomi completing the same assignment when in first or second grade.  A month ago, Charlotte's teacher sent home Flat Stanley for Charlotte to color and cut out.  It was accompanied by a journal for her to record her activities/adventures she has accomplished with Flat Stanley.  "Who is Flat Stanley?" Charlotte wanted to know.  The next day, her teacher came for her twice weekly  lesson with Charlotte.  At the end of the lesson, Mrs. Smith pulled out a slim chapter book with Flat Stanley on the cover.  She explained to Charlotte that the class had been reading Flat Stanley in class.  Now they were done reading, she was going to leave the book with us.  Charlotte was to record adventures she and Flat Stanley accomplished in her journal.... going to the store with mom, running errands, playing with friends.   After she left, Charlotte looked at me, frowning.  "I don't get to go anywhere mom!"

It's true.  Charlotte doesn't go to church, she doesn't go to school, we do not bring her to the store or any other public places.  The weather is nasty, so she doesn't play outside, and while we do try to have friends over, she doesn't have the amount of social interaction that she used to.  Her big excursions are going to the oncology clinic for chemo or visiting my mom in Bluffdale.  My sibs live close, but because all their kids have been constantly cycling colds all winter, we haven't seen them. 

It was time to be creative.  I saw a droopy mylar balloon left over from Charlotte's birthday.  "What if we tied Flat Stanley to your balloon and had him jump off the bannister down the stairs?"  Charlotte's eyes lit up and she ran for the balloon.  For the next 20 minutes, she tossed Flat Stanley off the balcony so he could float down the stairs.  The next day, we built a boat from a tupperware container with a piece of origami paper and a pencil for a sail.  We filled the kitchen sink with water, added blue food coloring to the water, and sailed Stanley.  Stanley capsized and had to dry out in the oven.  The next day, Charlotte rigged string to tie Stanley to her Barbie jet ski and let him around the house by dragging the string. We took Stanley to grandma's and counted her button collection... after we hit 100, we decided we would sort them by color instead.

Then we hit a slump.  Stanley went to work with me to be laminated... I kept forgetting to take care of it.  Charlotte needed to finish two more pages in her journal.  The bargain I made  with Charlotte was that we would have a flashlight disco, if she would write one page in her journal.  It took a lot of begging, pleading, cajoling, but it finally was done.  It was 8:30 at night, and Charlotte was looking at me to keep my end of the deal.  Thank goodness for my neighbors.  They sent over Charly's good pals in their pajamas with flashlights.  We turned on disco music, turned off the lights, and danced around with our flash lights for 3 songs.  After Oreos and milk, the neighbor kids were kicked back home, and we went to bed.

Now Flat Stanley has been laminated, to commemorate how being creative can make boring things fun.  He periodically disappears and reappears as we clean areas around the house.  We were supposed to ship him somewhere and have that person have an adventure with Stanley and then send him back with a letter that would be read in class.  There was much debate - I suggested Charlotte's new Uncle Dave to take Stanley Geese Policing, or Uncle Aaron who is out at sea.  Sean was suggesting Grandma Moore's 5th grade class.  Charlotte was not willing to let Stanley go yet, so he didn't ever get sent.  If she changes her mind,  somebody may find Flat Stanley coming to visit in their mailbox.  Hope they have as much fun with him as we did. 

Another day of chemo

Charlotte finished another dose of chemo today.  Sean wasn't feeling up to taking her, so I left work early, picked her up and drove her up to the clinic. According to the chemo "road map", her appointment should have been Monday, but since it was a holiday and the clinic was closed, the gave her chemo on Tuesday instead.  We go back to the every 10 days, Monday/Thursday schedule with our next appointment.

Her counts were great, which means they increased the amount of chemo she received.  They will keep increasing it unless her counts show that she has reached the max she can tolerate.  The appointment was short, only about 3 hours, and we were home by 2:30.  Charlotte and I played Lego Batman on the Wii for a while, then I decided to finish the project I started on Saturday - cleaning off the kitchen grout with baking soda and peroxide and re-sealing the grout when it's clean again.  The difference between the cleaned grout and the dirty grout is so drastic that I really regret starting it.  Every time I walk through the kitchen and hallway, it haunts me.  It will until I finish the whole thing....maybe by next weekend.  If I could go back in time, I would NEVER choose a light-colored grout again.  I should have chosen a nice dark brown.  Oh well.

Interim Maintenance II

Charlotte had a 9:30 appointment at the oncology clinic this morning for a lumbar puncture and a dose of chemo.  I was unsure of what came next, so I arranged to have the day off and attend the visit.  It was just as well, Sean has succumbed to a cold and wasn't in any shape to take her in. 

The road map for the next 60 days is for the Interim Maintenance II phase.  We already went through Interim Maintenance I phase.  Basically, it is the exact same thing we did last time.  Charly goes in every 10 days to Primary Children's for chemo - Methotrexate and Vincristin.  Each time she goes in, the dosage of Methotrexate is increased.  This time, they started her dosage of Methotrexate to be 2/3 the dosage amount they used for the final dose of Interim Maintenance I.   They  increase the chemo with each visit to the most she can handle.  Her counts will go down.  Interim Maintenance II phase lasts roughly 60 days.   On day 30, she has another lumbar puncture.  (I keep getting people who ask me what that is... It's a spinal tap.  They pull spinal fluid to examine for cancer cells, and insert chemo into her spinal fluid at the same time).  Each dose of chemo is "count dependent".  Her ANC must be 750 or they won't give her chemo.   If she runs into times where her counts below 750, they will delay chemo a few days until it comes back up, which will extend the length of the phase.   With Interim Maintenance I, her ANC never dropped below 750.  The doctor suspects she will finish this phase with no problems with her ANC this time to.  

Interim Maintenance was the phase that Charlotte had her seizure.  The oncologist has told us that Methotrexate in the spinal fluid has been known to cause seizures in about 10% of the kids.  The methotrexate administered through her port IV is not known to cause the seizures...It is a worry, but it is my hope that we will continue to see no problems.   

After Interim Maintenance II, Charly will be in MAINTENANCE.  This will mark the beginning of the "easy part".  Charly will only visit the clinic monthly for Vincristine chemo.  Otherwise, she will be taking a low-dosage chemo in pill form at home every night.  She will have a lumbar puncture every 3 months, to ensure no cancer is in her spinal fluid.  They also put a little chemo in her spinal fluid at the same time.  It's a relief to hear it's so close.  I asked the doctor, "She won't ever have to take steroids again, right?"  Apparently that's wrong.  She will still take steroids, for only about 5 days each month or so.  By the time they start affecting her appetite and moods, she'll be back off them.  

Maintenance lasts for 2 years after when she finished her Consolidation phase - (that was October last year).  Their goal is to keep her counts lower, around 1000 for her ANC (normal person's is around 1500).  The ANC is the She will be strong enough to fight infections for the most part, but there may be a time if she is fighting a bug that her counts will drop, and we'll have to watch her to make sure she doesn't develop a serious infection.

I asked if that meant she was still fine to go to 2nd grade next year.  The doctor said a lot of kids are able to go to school  for the most part.  I wish I could remember how he worded it exactly.  The biggest obstacle for cancer kids is that school wears them out.  It sounds like we may expect that she needs some time off now and then.  Already, I can see she'll be missing days for chemo visits, and if she feels worn down from the chemo, she may need some time afterwards to recoup.  However, watching how she has been after chemo every time this past 5 months, I wonder if she will allow it to hold her back at all.

After the "what comes next" discussion with the doctor, Charly and I crossed the hall for her lumbar puncture.  Usually, we just have a nurse practitioner who does the lumbar puncture.  Today, her resident, Dr. Maese did the LP.  Dr. Barnett, her attending, also popped his head in at the end when Charly was coming out of the Versed/Ketamine cocktail.  Charlotte is super hilarious and silly when she is high.  She sighed dreamily and said, "I'm okay with LPs mom".  Dr. Barnett and the nurses couldn't stop laughing.  Dr. Barnett turned to me and said, "You really should bring a camera in and film her sometime."  I already did it before once, catching just the tail end of her coming out, but I should try for filming the whole experience.  

Charly's next appointment is not for another 10 days.  We picked up Chik-Fil-A for lunch, since she's not allowed to eat before her lumbar puncture.  I dropped her back home with Sean, and took my car in for my emissions, new tires, a recall repair... it looks like I'll be finishing my afternoon at the dealership with a book.