St. Valentines is no Friend to Us

Jackson had his checkup at Seattle Children's on February 14th.  Since it was near Sammi and Zoe's birthday's we got a hotel room the night of the 13th and brought all the kids along for a little family bonding.  February 9th Jax had an appointment at Seattle Children's with a Pediatric Orthopedist since his broken elbow wasn't healing.  Michael's Granny had died on the 7th so he came with us to the appointment and afterwards we dropped him at SeaTac so he could fly to Utah for the Funeral.  At that appointment we learned Jackson was going to have to have a screw put in his arm for it to finally heal.  We planned to do the surgery early in March so Jackson could be ready for Football camp in June.  Then on Monday the 13th we picked Michael up at the airport and celebrated the girls birthdays.  The morning of the 14th Jackson and I went early to the Hospital for his MRI and BAER(brain stem auditory evoked response) test.  Once he fell asleep for the BAER I drove back to pick up the rest of the crew.  When Jackson was finished we got word that the oncologist had ordered an unscheduled CT scan on Jackson---red flag.  Next we met with his Endocrinologist, then onto Oncology.  Michael and I were prepared to "lay it all out" at this appointment.  We have noticed a definite decline in Jackson over the school year.  Speech slowing, sometimes choking when he drinks, motor skills worse, school getting very difficult, repeating himself often, volume control, impulse control, all things we had noticed when he was 14.  We didn't get a chance to "lay it all out" because the doctor came in and said she had already talked to Dr. McClain (our specialist from Texas Children's Cancer Center in Houston) RED FLAGS FLYING EVERYWHERE.  The MRI that morning showed lesions in the skull and pons area of the brain, a thickened pituitary stalk, and absence of bright spot in the anterior pituitary gland.  He had a "flair spot" on his right orbital bone in the MRI done  4 months ago which no one told us about because it was only a tiny spot that the radiologist felt was inconsequential.  Well on this MRI the spot is now 16x14x16 mm lesion that spreads from the orbital bone into the skull behind it.  This is the area they are going to biopsy tomorrow(02-27-12), one --because they can't biopsy the pons area of the brain and two --because this area is changing fast and the fear is that it might not be Histio.  Then on Tuesday he is scheduled for a bone scan, skeletal survey and something called a blood pool--new to us.  Then we can go home Tues. evening and head back on Thursday for a planning meeting with the oncologist and swallow study.  Thursday we should hear the results of all the earlier tests and get our treatment plan.  We have talked to Dr. McClain and he feels as long as the biopsy shows Histio we will do 12 months of the ARA-C again but this time and a stronger dosage.  If a few months in there isn't improvement he recommends putting Jax inpatient in the hospital and giving him an incredibly high dose of ARA-C that will wipe his counts out and necessitate him staying inpatient.  Jax has had a hard time with all of this--it's only been 18 months since the last chemo round.  He know how hard and long this will be and frankly he just doesn't want to be on the outside looking in again at all his healthy normal teenage friends. 
Michael leaves tomorrow morning for Dallas and business trip that has been planned for months and that he has to follow through with--this makes this week even harder.  He will be home Thursday about mid-night.  Mom and Dad are with us for the biopsy and Aunt Courtney gets the privilege of keeping the 3 little kids for us.  Sammi will be at Bailey's and I will be wishing I was at home with all of my little family and not back in this weird hospital world--sigh.
On the blessings side--my sisters Holly and Brenda and Holly's kiddos surprised us last weekend.  They with, Courtney gave me a room makeover and just livened us all up.  Kylie was especially adept at getting us laughing, by the time they left Jax was done crying and using his cancer to get the last brownie!  Carly Allred organized a Heart Attack of Jackson's room and when he got home from school the day after the diagnosis their were dozens of sweet messages written on hearts for him stuck to his bedroom walls.  So kind, so appreciated!  I will keep this blog updated as often as I can as we head into this new journey down Histio Lane--thanks for the prayers, we feel their strength.