Maintenance

Charlotte and I went to PCMC for a lumbar puncture and chemo. Today marks the start of MAINTENANCE! This means she only goes in monthly for IV chemo visits and lumbar punctures will only be every three months. The bulk of her chemo will be done by pill at home. We are looking forward to being done with chemo in November 2014. Yes, that's not a typo, it will be 2014 before she's done. 

I took off work to bring Charlotte in because I had questions for the doctor. It's impossible to ask multiple questions over the phone because it gets routed through the receptionist to the nurse, who sometimes has to go to the doctor. Then, when the nurse calls me back, I sometimes have a new follow-up question, which means another delay. I wanted to be sure I had a discussion with her doctor and get my questions cleared up. I was told that when Charlotte was on maintenance, she could go to school. I wanted to be sure she was cleared to go, and when precisely that would be - a few days more? another couple weeks? Also, the Rx for seizure meds to spray up her nose if Charlotte were to have another seizure expired after 6 months. I wanted to know if we still needed to carry the medication around with us, and if so, for how long? Dr. Maese, her resident, felt we were fine NOT refilling the Rx. He said he would consult with neuro, but he was certain that the seizure was from the medication, which Charlotte has since received without problem. We can stop carrying it about.

Then Dr. Maese pulled out the Rx to show me everything Charly will be taking. It's enough to make my head spin. Because they want to be very accurate with their measurements, her pill schedule is hilarious. As always, she is to continue taking an antibiotic on Mondays and Tuesdays twice a day. They have her back on a steroid for the first 5 days of every month. In the morning she is to take 2 pills from one bottle, and 1 from another. In the evening, she is to take 1 pill from each bottle. Then she is to take an oral chemo, Mercaptopurine, every day before bed. Monday thru Saturday she takes 1.5 pills. On Sunday, she takes 1 pill. She should not eat 1 hour before and 1 hour after she takes Mercaptopurine. Finally, every THURSDAY she is to take another chemo, Methotrexate, along with her Mercaptopurine, EXCEPT she's not to take it once a month on the Thursday she goes into the clinic for IV Chemo. Also, we are to give her an antacid the 5 days she's on the steroids, because it causes stomach issues.

Okay, if you've got that down, I'm impressed. Thankfully, they sent home a paper calendar with all this written down. They tell me after one cycle we'll be pros at it.

So, Charlotte is going to go back to school Monday. Hooray! We are going to work with the teacher about trying to keep her away from the snifflers and coughers. They have hand sanitizers ready to go. I strongly believe she will benefit socially from being back with her peers. She has continued to amaze me with how little the whole chemo has affected her. Her teacher has also commented about how energetic Charly has been when compared to the little girl she taught last year. Tuesday is her class field trip to the Zoo, so I thought I'd get the day off and take her separately from the group. That way if she's tired, we can leave early.

Naomi thinks we should have a party, and I think I agree. I know we still have a ways to go, but I'm told it's all downhill from here.

Why the Hemotology/Oncology Clinic is a fun place

We've been visiting the Hemotology/Oncology Clinic (also known as the Hem-Onc clinic) for about 9 months now.  My first visit was a quick walk-through tour offered by a nurse while Charlotte was working on crafts in her hospital room a couple days after her diagnosis.  "This" she said as we walked through the small clinic, "is where you will come about once a week to receive treatment.  Here's the check-in area, and here is where the patients receive chemo."  At that time, all I could see was a bald ten-year old with an IV hooked up to his IV, sleeping on a reclining chair with his parent next to him.  A mother trailed after her toddling 2 year old with an IV stand, trying to keep her from tripping on the cords.  A tiny infant in a car seat sat wailing with an IV stand next to her car seat.  I remember taking my fingernail and digging it into the underside of my arm in an attempt to not start bawling.  These poor babies!  My poor baby!

We have since found that Hem-Onc is a fun place to be.  When you walk in, there is a small waiting area that has a table of pre-packaged crafts.  Charlotte usually bee-lines to the craft table to choose a project the minute we walk in the door.  Last week was all the pieces to put together a paper bag cow puppet.  The Ziploc bag included all the materials, a glue stick, and detailed instructions.  I imagine that church groups or families get together and put these together and donate them to the hospital.  There is also a wooden “hat tree” in the waiting area.  It is covered with home-made and other donated hats.  There is a sign that tells patrons they are welcome to take the hats, but please do not try them on and put them back on the tree.  Always, we are germ-conscience.  Charlotte loves to go pick out a hat.  She has been instructed not to take more than one.  There are some talented people out there.  I look at the hat tree and think, I really should learn how to make a hat.  I could do that during sacrament meeting.  It would be a good way to stay awake and listen at the same time!

By the time Charlotte has chosen her craft packet, we are called over by the lady who weighs and measures Charly.  She puts her medical bracelet on her and takes her blood pressure as well.  We are then instructed to go to a private patient room.  That’s where we wait to visit with the doctors.  The nurse comes in to “access” Charly.  That means they insert the IV needle into her port.  If she has a LP (lumbar puncture) that day, they have her lie down and the put a numbing cream, Emla, on her spine and cover it with a Tegaderm bandage.  The cream takes about a ½ hour before it’s effective, we always put some on her port and cover it with Press and Seal (thank you Glad for such an awesome product!) before we drive to the hospital.  Even though Charly will be sedated for her lumbar puncture, the staff do everything to make sure she won’t suffer needlessly.

After the nurse, the child life specialist usually pops in to say hello.  She asks Charly if there is anything she’d like for today, she will tell Charlotte of any crafts they are working on in the back area of the clinic, where you receive transfusions.  Sometimes, there has been need to offer education to Charlotte at her level of understanding.  The child life specialist has brought in books with magnified pictures of blood cells, a kit with the medical tools Charly will see in the office.  They have been essential to help explain many difficult concepts. 

The doctors usually come next, sometimes together and sometimes separately.  Every once in a while, there is a medical student who comes in to take a health history or observe the doctors.  They look so young.

The doctors usually spend about 10-15 minutes in the room, unless we have questions.  They examine Charlotte, ask how she is doing, run through the next week/ month’s treatment plan.  For the most part, we see the same doctors, but sometimes they aren’t on the schedule, and we see different doctors.  I personally feel we are assigned to the best resident and attending.  They both have a great sense of humor, teasing and laughing often.

After the doctors are done with us, we go to the infusion area for chemo.  We choose a couple reclining chairs to occupy and settle in.  There is a freezer full of Otter pops, a fridge full of sodas, milks, water, gaterade, and juice boxes.  Another fridge has yogurt, individually wrapped cheese slices, and other goodies.  She can request crackers, chips and other snacks.  Charly can get a personal TV wheeled to in front of her chair, where she can choose to watch a movie or play a video game.  They have large DVD binders filled with movies and games.  Charlotte has only requested the TV once when she has been with me.  For Charly, it’s all about the craft table.  There reside markers, glue, glitter, and materials for the craft of the day.  For Halloween she made a giant spider from a Styrofoam bowl decorated with tissue paper and pipecleaners.  For Christmas, she painted a wooden donkey.  Often, there is a college age volunteer helping to assist patients as they work.  Yesterday was very disappointing because we were so quick with our treatment, there was no time for another craft.  “Can we stay a little longer to see what they have to do today?”  Charly asked.

You would think with the amount of patients the staff sees, one little girl would be hard to remember.  But from the front desk receptionist to the nurses and the doctors, they all know how much Charlotte loves those crafts.  They all smile and ask her what she’s going to work on today.  I see them also remember that this toddler enjoys the Dora kitchen and that teenager would prefer a TV.  There are some amazing people working there.

When I visit the clinic with Charlotte, I’ve never had to repeat the trick of digging my fingernail into the underside of my arm in order to prevent myself from crying.  It’s been due to a combination of the amazing people that work there and the people we don’t see who donate their time and resources to offer movies and crafts and games that make the Hem/Onc clinic a fun place for cancer patients.