Biopsy part 1 of Histio part 3

Jackson had a CT scan at 7:45 this morning then we checked in at the surgery center at 8 am. His surgery was scheduled for 9:15 but got pushed back until 10am because the previous surgery which had started in the middle of the night still wasn't finished. I can't imagine how that child's parents were doing. Jackson was a trooper and the surgery was 2.5 hours just like the surgeon predicted. When the surgeon came to talk to us (My parents were with me, because Michael is flying to Dallas today for work) He said how impressed he and the team were with Jackson. When they took him back to start his IV and put him under he joked with everyone and was so positive. He told us how amazing he thought it was for a teenage boy who is facing his 3 round of Chemo to be so upbeat. He said the surgery went fine and that they know they got a good biopsy, however he had already heard from the pathologist that they couldn't confirm Histiocytosis yet. There were histiocytes but everyone has histiocytes. The pathologist said there was something fibrous that they hadn't identified yet and that they planned to do more stains and testing but we may not get the answer this week like we planned. I asked if that meant it for sure wasn't Histiocytosis and he said no, that it still could be Histio. He also had a little more bleeding than they like to close with so they put a drain in his eyelid that we have to go have removed tomorrow morning-just one stitch is holding it in. Good thing Michael is in Texas, he wouldn't like the dressing changes! Jackson had nothing at the hospital for pain and since getting back to the hotel has only had Tylenol. He requested chocolate and Gatorade and those requests have been honored! Right now I am blogging to the sound of his snores. I love it--it could only be better if all my children were here snoring too.  I'm looking for answers as to why my words are underlined --- anyone answers??!!

                                    Grandpa Kent, Grandma Louise, and Jackson before surgery.

The surgeon came in and after we all agreed it was the right eye-he initialed the right side and made a dot to dot for his scalpel to follow!  This is so the scar won't be noticeable when it heals.

                                        After surgery back, with the initials JP still branding him!




WARNING A PICTURE WITH THE BANDAGE OFF---MICHAEL STOP LOOKING NOW!!

The little rubber band looking part is the drain that comes out tomorrow morning.

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.

Zoe Ciel Noftle is 9--very fine, turning 9!

Photos by Aunt Brenda--love Aunt Brenda!

We drove to Seattle February 13, 2012, Zoe's 9th birthday.  We went out to eat, swam in the hotel pool, went to the American girl doll store it was a good day for Zoe Ciel Noftle!  In the spirit of fairness, here are 9 things about our AMAZING Zoe:

1.  She loves animals and babies, and has since I've know her.

2.  She has the nicest fingernails in the family, I love the shape of her nails!

3.  She has a birthday 2 days after her big sister Sammi.  They share a birthday month, STRONG personalities, and the same "eye-rolling, hands on hips" put Mother in her place attitude!

4.  She still loves to be read to at night, but instead of Dr. Suess we are now reading Fablehaven.

5.  She loves to sing, but not if you want her too!

6.  She does not love to have her hair done (or even brushed).

7.  She hasn't ever met a vegetable or fruit she didn't like.

8.  She plays basketball and loves it.

9.  She is a loving daughter who is truly beloved!

Happy 9th Birthday ZOE CIEL NOFTLE!!

Samantha Reine Noftle 15 years old.....let the countdown to 16 begin

Aunt Brenda did a photo shoot at Ensign Ranch during Christmas Break.

The photos are so good that they are Sammi's 15 year old pictures.  I literally couldn't see a bad one.  But since I am SOOOOOOOOO far behind in blogging you will get a small sample of the photos. 

Sammi turned 15 on February 11, 2012.  FIFTEEN I can sing that "when your 15" song to her this whole year--I think she will really enjoy that.

There are 15 things about Sammi that I am about to share, I could share 15 million, but again behind in blogging!

1.  She is smart, and so far great grades.  She has set a goal of getting into BYU provo, which as we understand it, is getting harder by the minute--YIKES!

2.  She showers at night, and still spends over an hour getting ready before early morning seminary each day.  OVER AN HOUR--no wonder she looks so beautiful!

3.  She sleeps with two stuffed elephants, because one isn't enough. She also sleeps with the blanket that I got at the baby shower just before she was born.  Mrs. Bolen, and Mrs. Cuske made it for her, and they are both gone now --- but she would want them both to now how much she loves that blanket.

4.  After she leaves for seminary/school in the morning the stuffed elephants weep at conditions of the room that they have to live in.  Seriously I think she is Holly & Heather trained(the must have a secret training camp I haven't discovered)--not Becky trained.  My room growing up was clean, the twins 'not-a so-a much-a!!

5.  She sings like an Angel, especially when she thinks no one is listening.  She just sang a solo in Church February 19th, 5 days after we found out Jackson has new lesions in his brain (another post!).  The song had been picked out long before this appointment but of course the words seemed to match what he was going through perfectly.  On the way home from the hospital with Jax she practiced her song and we all cried, Jax the hardest, but all of us were weepy.  I thought there was no way she would have enough composure by Sunday to sing that song with the touching message, but she proved me wrong (again!) and did beautifully.

6.  She is either the life of the party in our house or the wet blanket that slaps us in our face--harshly.

7.  She is determined to be a "good girl" .  We don't have to encourage her to dress modest, watch her language, be careful of her music, she polices herself on those fronts harsher than I would. 

8.  She has a love for children and the lifeskills students.  She also has tried over the years to communicate with a deaf student in her grade--so much so that the girl has a name sign for Sammi.

9.  She never met a dollar she didn't want to spend.

10.  She loves the mall--it's getting serious between them too.

11.  She is talented athletically and could be amazing with a little more effort.

12.  No amount of bribing can make her invest a little more effort in anything she doesn't care to put more effort in!

13.  She is happy 75% of the time, and a joy to be around.  The other 25% of the time she is a teenage girl--we have faith she will outgrow that!

14.  She is responsible for her own schoolwork.  In gradeschool, I used to have to really follow up with her to make sure she was doing her homework.  But sometime in Middle School she took that burden on and I can trust her now to do what needs to be done.

15.  She is a daughter that we are blessed to have, and a daughter that is so very loved.

Happy 15th Samantha Reine!