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Hi everyone, sorry that it’s been awhile since we’ve updated everyone on JJ’s progress, but with the holidays and everything else, things around here have been pleasantly nuts! 

I’ll start out by saying that JJ is doing very well right now.  He had a fantastic Christmas, spending Christmas eve with Jon’s family and getting up at 2:45 am in order to surprise my family in San Diego on Christmas morning. He received so many great gifts, which explains why our house now looks like Toys R Us! He was very much into the whole idea of Christmas this year, with one of our favorite highlights being driving around San Ramon looking at Christmas lights a couple of weekends in a row…definitely a new-found family tradition!

This winter has been a tough one in terms of colds and germs for JJ.  He and Jaxson caught a cold in early December, and while Jaxson was able to fight it off in 2 days, JJ couldn’t kick it for over a month.  It really goes to show the difference between a fully functioning immune system and one that has been severely compromised.  This past week, the stomach flu invaded the Moisa household, which was anything but fun.  The interesting thing is that although he was hit the hardest, JJ handled it the best out of any of us.  Our guess is that he’s just used to feeling quesy  and nauseous because the stomach flu didn’t seem to interrupt his playtime one bit. 

JJ’s at-home oral chemo regimine has been somewhat of a chore.  The Accutane is a very strong drug that wreaks havoc on his skin.  After just two days of taking it, his face starts severely peeling, his lips start bleeding, and the skin around his nose was becomes extremely raw.  He breaks out in a rash on his legs and his rear end and his “boy parts” started to peel.  We spend quite a lot of time trying to cover him from head to toe in Aquafor lotion and Lubriderm.  He absolutely hates it and fights us tooth and nail.  Not only does the Accutane do a number on his skin, it’s very hard to administer it to him.  It is a capsule that has to be chewed and swallowed, not mixed into a liquid and given in an oral syringe.  We originally tried to hide it in food, but he was too smart for that and started to be suspicious of everything we tried to feed him.  Because we are still on a mission to fatten him up, we really don’t need him to develop any aversions to the few foods that he actually eats, so we decided that he was just going to have to buck up and take it.  He HATES being held down and forced to take the capsule, which makes it a huge, rather inhumane ordeal, but it is slowly getting better, though not easy by any means. He knows that he doesn’t have a choice and that we’re not going to back off, so while he’s still fighting us, it’s going much more quickly these days.  His second chemo drug, which he gets Monday through Thursday, every week, is much easier.  Although it is highly toxic (I have to wear a mask and gloves and mix it up in a well-ventilated area), it can be mixed with liquid, so he takes it without a fight…thank goodness!!

This past week was JJ’s third birthday.  It’s hard to believe that it was a year ago that our pediatrician first discovered that JJ’s head was growing too big, too fast. This birthday is an important milestone for us because there were definitely moments over the past year when we didn’t know whether or not he would be around to see his next birthday.  I know this sounds morbid, but it is absolutely the truth, as the median time for survival after the diagnosis of ATRT in a 2 year old is 6 months.  The doctors have told us that if he makes it 3 years after his initial diagnosis, that his long-term chances for survival are hugely improved…so needless to say, until March 2014, we will continue to live on pins and needles (and after that, we will just continue to live on pins). 

Although it was a huge deal for him to celebrate his third birthday, it was really rough not being able to throw him a huge party.  Because his immune system is still so weak, there was no way that he could be around a large group of people at this point.  Because we didn’t want anyone’s feelings to be hurt by chosing a select group to help us celebrate, we decided to stick with a party that consisted only of the immediate family.  We’re hoping that we’ll be able to have a party for him in the summer to mark the one-year anniversary of his bone marrow transplant (his re-birthday, if you will), where we will be able to invite all the members of Team JJ to help us celebrate how far he has come. 

Everything is looking good as of right this second.  He has various appointments coming up, one of which is to discuss the blood tests that were taken to determine the state of his immune system. If things look good, the doctors may start to reduce the number of medications he is on (not the chemotherapy), and might even consider allowing him to go out without a mask.  He has an appointment with his neurosurgeon next week to have his skull examined, which looks absolutely fabulous.  The swelling that he had for months between his skull and his skin has completely dissipated and his head looks almost perfectly symmetrical (which is hard to believe if you saw it beforehand).  Next month he’s scheduled to have his next brain and spine MRI to ensure that there are no abnormalities or new cancerous growths.  He will also have a sedated hearing test to check and see if his hearing was affected by the chemo that he’s received over the past year.  On a hugely positive note, his blood counts have been stable for long enough now that the doctors have decided that he only needs to have his blood drawn once a month rather than once a week.  This is incredibly wonderful because taking a squirming, screaming child every week to get his arm poked at a lab where they don’t specialize in children has been an absolute nightmare.  It would take four of us to hold him still enough  to get the needle into his arm, and even then, there was no guarantees that they would hit a vein the first time around.  With JJ in the chair screaming and Jaxson in the stroller screaming (because JJ’s screaming was scaring him), everyone involved seriously needed a stiff drink afterwards.  As happy as I am that we don’t have to go every week, I can only imagine how happy those poor women at Quest Diagnostics are!

JJ’s appetite still leaves much to be desired.  He’s eating three meals a day but isn’t putting on much weight.  He’s incredibly picky and still refuses to feed himself.   He won’t eat ANY vegetables, very few fruits, no red meat (except the occasional frozen hamburger), no desserts, and he won’t drink any protein shakes.  He will drink hot cocoa, and eat mini-pancakes, tortillas, and toast, and he’ll occasionally eat pasta, chicken, and rice.Every meal feels like a marathon, requiring a lot of patience and endurance. There are definitely days when I worry that he’s not eating enough. 

We anxiously look forward to the day when we can take JJ to Disneyland on his ultimate vacation.  We’re hoping that by next fall he’ll be able to experience the happiest place on earth.  Our Team JJ fund has $5, 217 in it, a fantastic amount to facilitate a trip of a lifetime.  While there are still Team JJ bracelets out there that have yet to be paid for, we’re not actively seeking them out because we feel so blessed that the bracelets made so much money in the first place. JJ is a very lucky little boy to have so many people who care about him and are cheering him on.  You can all be certain that he will grow up knowing exactly how many people stood by his side during his time of need.  We just can’t thank you all enough.  Happy New Year from the Moisa Family!

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