Monday, June 18, 2012

Chemo Round 2, day 1 our warrior geting weary?

Sorry I have not written in a while.  Emotionally I have not had it in me.  Today began another cycle of chemo.  It was off to a rough start.  Lisa was ready to go this morning and there were no problems initially.  As we neared the hospital, she asked if she was getting chemo.  When I said yes, hysteria kicked in and she started to cry.  As she chucked her baby at me from the back of the car she said “I don’t want chemo, I just want to go home.” 

Once the car was parked, Lisa refused to get out.  I managed to keep my cool as my mind raced trying to figure out exactly what is the right protocol for this.  Seriously?  Do you just tell your child to get out of the car and to get treatment that you can’t guarantee is fighting their disease and could make them feel like hell? Do you scoop them in your arms and run far, far away from the nightmare.  As questions went thru my head and I tried to sort it out, I just held my breath and physically dragged Lisa from the car.  Sympathetic looks from parents on the elevator had me questioning whether a chemo kid should be treated any differently from a healthy kid who has to go for their shots….what exactly are you supposed to do. 

As usual, follow your instincts and “doing what you got to do” was how we got thru the moment.    I chose to forego the lab and went directly to infusion where I let them know Lisa was having a bad day and would need her blood draw done with them and that we were way behind schedule.  We were in the waiting room for ½ hour where I cuddled Lisa while she curled up and refused to make eye contact or conversation with anyone.  After about 45 minutes she started relaxing a bit.  At the hour mark, we got into a room and the situation was explained to her doc and nurse as Lisa crawled under a blanket and refused to talk to them.  We opted for the slow and easy pace and brought in one of the child life specialists who was able to engage Lisa in a game on the I-pad.  After about ½ of this, Lisa was back to being herself and allowed her nurse to access her and draw her blood. We then moved to the playroom where Lisa painted and did crafts and had no issues with taking her oral chemo or letting her nurse examine her and things went on as “normal”.

 It’s heart-wrenching when she has these moments.  Today’s episode was even more disturbing to me because it comes so quickly after an upset Lisa created on the playground a little over a week ago.  Apparently, during recess, Lisa chose to announce to her little friends that she “was going to die in 4 weeks”.  This was distressing to all who heard and suddenly Lisa’s teacher was surrounded by a gaggle of crying girls.  They were escorted to the principal’s office who was able to defuse the situation with the wise words of “no one knows when they are going to die” and talk of more happy moments and memories.  When we asked Lisa about the situation, she merely said she thought she was going to die and wanted to go see Grandpa Mac and Grandma Yesh.  Hard words to hear and even harder to figure out what exactly is going thru her head.  I hope it is merely a 7 year old trying to make sense of the world and not those of a cancer patient that has some intuition about their disease or a warrior who is getty weary.

 So….lots of emotional upheaval these past few weeks.

 On a positive note, a great, big “Job Well Done” to Tom who graduated from the 8th grade and received two awards at the 8th grade ceremony.   The first award was for Positive Behavior Support and the other award was for his hard work in Social Studies.    This award saved Tom from missing the8th grade school trip to Washington, DC.  Just prior to going to Tom’s award ceremony, I had drafted an email to his teachers saying that unfortunately due to missing work (an ongoing problem between Tom and I) he would not be able to go to his 8th Grade Washington DC trip and they should gift his trip to another student.  Neither Tom nor I were happy with the situation and I kept asking Tom to give me a reason, any reason, that proved he deserved to go even though he was missing work.   An hour later, he had his reason.  He was one of the 4 students chosen by all the teachers from 180 students going Washington, DC to represent Central Middle School and lay a wreath at the Vietnam Memorial.  Way to save yourself …BRAVO!  He loved the trip and it was a great experience for him.  Hopefully his close call at losing the trip will motivate him to turn in his work on time as he enters the doors of high school in the fall.

Hope everyone is settling into summer.  Keep praying and keep living in the moment.

Sunday, June 3, 2012

Sunday 6/3 - Chemo, Day 5

Lisa started chemo on Wednesday and today is the last treatment for this round. She'll endure another in a few weeks and then an MIBG therapy late July. Lisa is doing great with her treatments. She either plays with her peeps (nurses and\or Child Life Specialists), takes a nap, or watches a movie during treatment with lasts a few hours. When she gets back home she's running the house like any normal 7 year old. We're all looking forward to the end of school and spending some time at the cottage. We also have a cruise planned, and the kids have summer camp. We might try to squeeze in a trip down to North Carolina and Michigan Adventure at some point too. As ususal we're trying to make the most of the 80 or so days of summer vacation.