Day 176.....three week whirlwind

Thursday, March 14, 2013 

We have been home for 3 weeks now.  We have been super busy and trying to ease back into family life.  On top of the extreme cleaning routine, we had a lot of adjusting to do.  Sean was able to work more, which he needed to do after many lost hours at work taking care of Luca, running the house, and traveling to Denver.  Dillon and I had to get used to just being in a space with more people, more activity, more demands, more noise, more distractions.  Luca had to get used to having Dillon and I back in his daily sphere.  He was very clingy for a few days.  In fact he slept in Dillon's room on the floor for the first week.  I had to get used to feeding an entire family all the meals of the day, every day, day after day (hahahaha.....I was spoiled at Brent's with not having to worry or focus so much on preparing food).  The laundry and cleaning, as well as Dillon's homeschooling and Luca's school schedule keep me pretty busy.  I underestimated how intense the transition would be....but we are all doing well and I think we have adjusted back into "normal life".....except for.....

Dillon has been to UNM 3 times in 2 weeks for blood tests and exams to watch those lymph nodes that showed up on his last PET when we were leaving Denver. 

We actually just got back from Denver last night.  We drove up on Sunday, had appointments all day long Monday and Tuesday, and drove home on Wednesday.  All four of us were able to go.  Brent's Place has basic rooms for this purpose (small rooms with 2 twin beds and a bathroom).  We were able to use the kitchen downstairs for food storage and prep...and we also enjoyed a couple of nice meals out.  Monday night was community night so a meal was served and we got to hang out with our friends that we left behind.  It was really enjoyable and less stressful than I had anticipated.  Dillon and Luca schemed on the whole drive up....their plan was that they would be in one of the rooms and the parents would be in the other.  Sean and I got a kick out of the boys trying to convince us that they could handle the responsibility of behaving (i.e. no jumping on the bed, no watching TV all night, no yelling, etc).  Of course......because we are the most awesome parents ever (hehehe).....we let them have this wish.  They handled themselves beautifully and Dillon was even a little ill one night and Luca handled it and then came and got me.   My theory....maybe they will remember the time mom and Dad let them have their own "hotel room" and they will remember the reasons why we were there less.  Again, my quest for building memories that will overpower the scary, negative stuff that is still a necessity in Dillon's journeys. 

Sooooo.......test results.....

PET scan was done again to recheck those pesky nodes that showed up on his last one a month ago (when we were leaving Denver).  It came back with a slight positive reaction but the docs all chalk this up to the little cold that Dillon is currently battling.  He is not very ill (a little cough and a slightly stuffy nose).  So basically the docs told us we can relax, that this is very very reassuring, that they don't really believe these are lymphoma in any way.  So for now....we breathe easy regarding this being a recurrence of the cancer.  We will re-scan in 3 months for another comparison and we will be going to UNM every other week for an exam just so the doc there can feel and make sure there is no increase in size in the meantime.

Dillon's bone density test has returned, as well as vitamin D levels.  His vitamin D is now within normal limits so we will continue that supplement for a few more months to be sure his bones are getting what they need.  His spine is completely normal as far as the density goes.  There was a question of a compression fracture but they have ruled this out because his bones look strong in that area.  His hip bone, however, showed a little lower density, so he continues on the vitamin D and increased calcium intake but nothing more aggressive than that is needed!!  Part of the bone density workup was also evaluating his growth.  He did in fact stop growing last spring, just about the time he was diagnosed.  With the cancer and the steroids and the radiation and the chemo a halt in growth is not unusual.  They expect it will pick back up in the next 3 to 6 months.....crossing our fingers. 

Dillon's lungs checked out as healthy and functioning well, as did his teeth. 

Two more meds were discontinued so that is 4 less pills per day.  I don't have a pill count at the moment but I think it is down to about 18 or 20. 

Dillon's weight was stable.  He is eating well, a more balanced diet than before, and he is much more physically active, so hopefully we will see him continue to gain a few pounds in the form of muscle mass in his legs and arms.

The belly has been pretty good.  He is eating a larger variety of foods, especially spicier foods, and at times his stomach protests.  He has had a few bouts of nausea and vomiting over the past 3 weeks but nothing that is concerning for a recurrence of the GVH.

We return to UNM every other week and we return to Denver monthly with the next visit being April 7-9. 

Spring is in the air and we are all enjoying some fresh air and sunshine...hope you are too!!!!