3 days down of steroids. Down with the orange cone!

My Story

Mark is currently in the 3-Year Continuation Phase of his Leukemia treatment . He began Cycle 12 (of 12 Cycles) on June 2, 2009.

Week 1-4- Completed

Week 5 - 6MP, Methotrexate, Vincrisitine, Pantamidine, and steroids

Week 6-8 - 6MP and MTX

July 27 - Final Tap and Bone Marrow.

Journal

Tuesday, June 30, 2009 4:41 AM, EDT


One step closer....

With yesterday's doctor's appointment behind him, Mark is one step closer to completing his 3+ years of chemotherapy.  Wow, 3 years!  Over a third of his tender, young life Mark has endured chemotherapy.  In a recent conversation,  Mark told me he doesn't remember not having cancer.  However, very, very soon, I'm praying anyways, Mark won't remember every single spinal tap, needles, and yucky medicine.  He will remember the good of the community and happy times.

Megan and Chris joined us on our trip north on Monday.  We left the beauty of Lake Anna to join the thousands of northbound commuters.  The kids were so happy.  Going to the doctors is definitely part of the Isabelle routine.  But this time Mark talked about his upcoming appointment with Meg and Chris.  I heard him tell them that he only has to get a "butterfly" (port accessed) one more time after today.  Both Meg and Chris were so intent on listening to Mark's every word and to tell you the truth so was I.  This is where I turned down the radio and listened to their conversation.

I couldn't believe he remembered every detail I told him last week.  So, Mark went on to say, this is the last week he would take happy pills.  Meg and Chris began chanting a victory tune of no more happy pills.  Mark was simply happy with one less pill on his plate.  Meg and Chris, however, were happy because of no more mood swings.  No more tip-towing around the house once a month.  No more PMS tantrums!  No more anger towards them!  Of couse they didn't share this with Mark but I could read their body language and faces through the rear-view mirror.

Chris brought up a great idea in we should have a burning of the orange cone celebration.  Down with the steroids and the orange PMS cone.  The laughter was priceless.  I wonder how the orange cone would burn?  Painfully slow or fast and furious!  I can't wait to find out.

Mark's appointment, for the most part, went as scheduled.  We arrived early hoping to leave early but that didn't happen.  Mark sat on my lap to get his port accessed.  He reminded me this was the next to last time he would have to sit on my lap.  Christine quickly cleaned his skin around his port and one, two and three he was accessed.  Have I ever mentioned how Mark is the bravest child I know?  Well, Mark is BRAVE!  Mark's happy and contagious smile and giggle seconds prior to the needle getting him transformed into a sad and vulnerable 7-year old during the procedure.  As usual, Mark quickly composed himself and moved onto the next procedure.  Mark is so BRAVE!

Mark received so many drugs.  Vincristine, Zophran, Zantac, Cortizone, Bendadry, Pentamidine, 6MP, Methotrexate and of course his first (of 10) installment of those d@#% steroids.  Down with the orange cone!

Mark and Chris played Wii for a short time before Mark just couldn't physically keep it together anymore.  His eyes got heavy by the minute and then he was down for the count.  I love to watch him sleep.  Soon I can watch him sleep without the pole attached to his side.

While Mark slept Meg watched a move and read a little.  Chris was busy working on a craft project and I sat there cradling Mark and thinking of the upcoming months.  I overheard Chris tell Megan he was making a dream catcher for Mark.  He went on to say that Mark could hang this dream-catcher in his room so he would have great dreams of not having to take anymore medicines.  Hearing my 10 year old sound so mature and wise brought on the tears.

It was time to go so the needles and tubes were removed from Mark's body.  Mark was definitely unsteady on his feet.  Megan jumped to his rescue and helped Mark to his feet and assisted with his shirt.  She is such a great sister.

Mark's next appointment is in the books for July 27th.  He will have a spinal tap and a bone marrow biopsy.  He will also receive last inthetrical antibiotic.  Future antibiotics will be given orally six times weekly for six months post chemo.  Mark's port will come out sometime in early September.  That will be an emotionally time.

Thanks for continuing Mark's journey with us.  It's been a bumpy ride but because of each of you Mark has come out on top and more importantly a cancer survivor!

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Donating your blood only takes minutes but could safe a life. Mark has had a least a dozen blood and platelet transfusions. With those transfusions came new life. You could make a difference!

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HOSPITAL INFORMATION

Childrens Hospital
Washington Blvd
Annandale, VA
United States