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A Long Overdue Update!

My sincerest apologies that it has been SO long since we have updated the blog.  It’s funny how once life calms down, it seems impossible to sit down and find the time to write an update (or do anything for that matter with a 2 and 4-year-old running around!).

JJ is doing really well right now. He finished up his 38 rounds of radiation at the very end of December and amazed his team at how well he handled it. He is still technically NED (No Evidence of Disease), as of 2/6/13.  He will have another MRI on May 29 that will let us know whether anything new is popping up (fingers crossed for no new growth).  His appointments at the hospital are fairly infrequent now, so we are basically trying to adjust to being normal.

I truly had no idea how hard it would be this time around to try to feel normal again.  It always feels as though we are waiting for the other shoe to drop.  The anxiety we have had since his relapse last year has been almost indescribable.  JJ is healthy, strong, happy, and energetic and I absolutely HATE that all that could change at the drop of a hat. While we truly hope that he continues to keep on improving every day, it is impossible not to think about the what-ifs.  This is where I will stop my own emotional ramblings because I know these raw emotions make everyone, myself included, uncomfortable. 

JJ looks great right now.  He and Jaxson run around every day, making me nuts, just like they are supposed to! Now that the weather is nice, they love playing out in the backyard on our fantastic train play set from John Manchip Playground Design and Make-A-Wish.  Right now we are looking into signing JJ up for some special pre-preschool instruction through the school district.  Although he is smart as a whip (and talks like a 40 year old man), he is socially delayed.  Because he essentially spent two of his four years either in the hospital or on germ-quarentine at home, he hasn’t really had too many opportunities to interact with children his own age.  And then factor in my own anxiety about kids making fun of him or parents staring at him and hopefully everyone can understand why we hardly leave the house.  I know people are curious when they see that over 1/3 of his head is bald, but it kills me to see people staring at him rather than trying to ask about it. 

JJ is still having some balance issues that affect his ability to run and/or change directions quickly.  At two and a half, Jaxson runs circles around him.  No one knows whether he is having left over issues from the chemo (one of the drugs habitually causes a foot-drop which makes it difficult to move the muscles in your calves and feet) or if it is from the impact of his grapefruit-sized brain tumor.  Regardless, his mobility issues are not huge and don’t really impede his day-to-day activities, except for the fact that I worry CONSTANTLY that he could fall and hit his head on something, which makes me hover over him non-stop when we are outside or at the park.  Other mothers roll their eyes when they see me following him around at the park, like I am helicopter mom.  His skull is still very soft and it pushes in if pressure is applied.  I always find myself wanting to say “If your kid falls off a slide or walks in front of a swing and hurts his head, worst case scenario, they could get a concussion.  If JJ gets kicked in the head, his skull will push right into his brain and could kill him. ” The stuff that we have to worry about now is so NOT normal and it is still a very difficult adjustment.   

In addition to the balance issues, we suspect that JJ is having some hearing issues as well.  He seems to have muffled hearing on the side of his head where his tumor was located, but again, this could be a side-effect of one of the chemo drugs (one of them causes hearing loss in over 60% of patients) or it could be from his original tumor pressing up against the inside of his ear.  Although his vocabulary is incredibly impressive, his tone is still very babyish, which I think has to do with his limited ability to hear soft letter sounds (he can hear whispered words like truck or cat, but has a hard time hearing whispered words like shoe or love). This is all stuff that is minimal in the grand scheme of things, but they are just things that we are keeping an eye (or ear) on. 

Another issue we have with JJ is figuring out how to discipline him.  He is incredibly stubborn (I imagine that comes from being his father’s son, and probably from coming from a long line of hard-nosed portuguese:), and he seems to have a lot of pent up anger (which is totally understandable).  It is impossible to know whether he is acting out like a normal 4 year old, or if it has to do with some residual effects from all that he’s been through.  We try to tell ourselves that we have to discipline him because we are not doing him any favors by getting him through this battle with cancer, only to have him grow up to be a person that no one wants to be around.  So basically what this means is that he gets yelled at and punished like a normal kid (whatever that means) and then I have to go hide and cry out of guilt.  Oh well, I’m sure this will all work itself out because we are not giving up.

In addition to his issues with balance, hearing, and behavior, he has also developed some very repetitive behaviors.  He is a stickler for routine (that definitely comes from me), but absolutely cannot handle it when the routine changes.  I imagine that it is a control issue…for someone who has had zero control over the past two years, he seems to be grasping for whatever control he can get (also, definitely from me).  He has to ask us before he takes each bite of breakfast (pancakes every day) whether every individual piece has butter, syrup, and snowballs (powdered sugar) on it before he can eat it.  He’s very particular about dirt or messes and likes things in very particular order.  We have to say goodnight to him a certain way with no deviations or all hell breaks loose. Before he goes to bed at night, he makes us tell him exactly what we are doing the next day, each and every detail.  There are so many little things that he is quirky about, but I suppose it really isn’t a huge surprise, all things considered. 

The problem with cancer (besides the obvious problem…it kills you), is that the long-term side effects are often very hard to chart.  The number of things that can pop up later down the line is incredibly long and often very serious.  We keep our fingers crossed every day that his issues remain relatively superficial (I can take a little OCD over a secondary cancer any day). We do not know what the future holds, but we never take a single moment for granted.  Last weekend I was talking to a couple who had lost their daughter to cancer over 20 years ago, and the husband put his arm around me and said “We’re part of an elite group that no one wants to be a part of…but I think we’re pretty special.”  That’s exactly how I always feel and to have another cancer parent validate those feelings really made a difference.  We are a VIP party where no one wants the bouncer to let them in beyond the velvet ropes!

  We are thankful every day for all the love and support that we receive and we don’t know what we would do without everyone.  That being said (here it comes…get ready for it…mama bear in full-effect), those of you who dropped off the face of the earth when we needed you most, please don’t expect us to welcome you back with open arms simply because JJ is doing well right now.  We know that cancer is ugly and uncomfortable and that it is WAY easier to bury your head in the sand rather than admit that it is a real thing that could happen in your own family.  As harsh as it may sound,  if you chose to ignore JJ during his darkest hours, please don’t plan on sharing in his sunshine.  The drama that continues to be heaped upon our family because of the insecurities of others is almost laughable in its absurdity (almost).  Next time you feel assholey enough to cry about how unfair it is for JJ to receive more attention than other kids in the family, just know that we would trade every ounce of attention, every microscopic drop, simply for the chance to have a healthy child…and if you can’t understand that, you are the sick ones.  Ok, Mama Bear rant over:)

Anyways, I am hoping that I will get better at keeping everyone updated from here on out.  It is so much faster to post quick updates on our facebook page (www.facebook.com/teamjj4life), but we know that not everyone is on FB.  If you are on FB and haven’t like JJ’s page, please do so and help spread the word about our little superhero. We love and value all of our members of Team JJ, so please continue  sending JJ your positive energy, prayers, hope, love, or whatever else you individually believe in.  Thanks again.

Fighting the Good Fight

Hi Team JJ! Even though we have been trying to give brief updates about JJ’s progress on Facebook, we know some people don’t use FB and still want to know what’s going on.
JJ checked into the hospital on 9/10/12. He immediately had his central line inserted directly into his chest so that he would be able to have his blood drawn and his IV meds without having to be poked. While it is a blessing to have his line back in, it is also his largest chance at infection.
JJ did really well with his initial 6 days of super chemo. He maintained an appetite and wanted to go to the playroom every day. His stem cell/bone marrow transplant was on Tuesday, 9/18. He handled it like a champ, not even throwing up (which frequently happens). His aunty Carolyn was here for the festivities, holding his hand throughout the whole thing. The funny thing about the transplant is the unfortunate smell. The stem cells are frozen in a preservative that smells like rotten stewed tomatoes and garlic, which seeps out of the pores for 24 hours after transplant. Its definitely a smell that sticks in your memory.
After his transplant, JJ continued to truck right along. He still felt well and was still managing to eat. Around day 3 post-transplant, the yuckies started to set in. The effects of the chemo take a few days to show up and when they finally did, it hit him hard. When that happened, JJ stopped eating and drinking completely because everything that went in immediately came back up. They put him on IV nutrition to ensure that he is getting everything that he needs, but the goal is to get him eating again as soon as possible.
The last few days have been pretty rough. We’ve tried to post pictures of JJ where he looks happy, but the truth is, he feels like absolute crap. He throws up if he even hears anything that has to do with food and he can’t even keep a sip of water down. Yesterday, the only time he lifted his head off of his pillow was to vomit and he only said about 5 words all day long. He’s incredibly weak because his hemoglobin has gotten incredibly low (which is normal at this point in his recovery) so he’ll be getting a blood transfusion this afternoon. Hopefully that’ll give him a little color because he’s white as a sheet and his heart is starting to murmur (also normal when hemoglobin is low). He’s developing mucositis (extreme inflammation and ulceration of the mucus membranes lining the intestinal tract), which is a very painful and often debilitating side-effect of cancer treatment. It causes horrible stomach aches (from swallowing all the mucus), sore throats (from the inflammation and vomiting), and very severe mouth sores and swollen lips, which makes it almost impossible to eat, swallow, or even talk. Last time we went through treatment, he never got any mucositis, but this time he isn’t so lucky.
The doctors have assured us that he is bottoming out right now but that he will begin to show improvement between day 10 and day 15 (today is day 6). This morning his ANC (the measurement of total infection fighting ability) is zero (normal range is 2,500-6,000); His white blood cells (overall immune system function) are at less than 100 (normal is between 5,000 and 14,000). His platelets and hemoglobin are also incredibly low, so he’ll receive blood today for the hemoglobin and probably have a platelet transfusion in the next couple of days.
As bad as all the side effects are, we know that it means that the drugs are strong and are doing their jobs. We also know that he’s a tough little guy and that his little body is going to push through this. We can’t wait until our family is reunited in the comfort of our own home. We miss Jaxson like crazy (I haven’t seen him in 8 days) and Nana Nancy says he misses JJ too much! It’s much different this time around because the boys know that they are separated and really feel the loss. JJ told me this morning that he wants to go home to see his brother. It absolutely breaks my heart. It’s definitely ugly right now, but it’s bound to get better. Without rain, there would be no rainbows…but man, this storm sucks!

The Fun Before the Storm

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 Hi there, Team JJ! We just wanted to give you yet another update on our little Superhero.  As you all know, JJ had surgery this past week to remove the new tumors in his brain.  But before we go into detail about that, we wanted to fill you in on a couple of happier events!

Because of the generosity of Team JJ, we were able to take JJ on a fantastic Disney vacation before he restarts treatment. We all had a total blast, but JJ in particular had an absolutely amazing time.  We spent 5 days in the parks and 4 nights at the Disneyland Hotel, making sure that the boys got to experience as much of the Disney magic as possible.  Needless to say, Cars Land was the highlight of the trip.  Thank goodness we were able to enter the park an hour early because it was ridiculously crowded once the gates opened.  The boys never wanted to leave Radiator Springs, thinking that Cars Land itself was actually Disneyland.  Every time we left Cars Land, JJ would say “I want to go back to Disneyland!”  Everything was so familiar to him that I think he felt right at home:)

While we were there, JJ’s buddy Zack and his mom Tracy (who Jon has known since kindergarten), came to hang out with us! Thanks to Tracy and her amazing photography skills, we were able to get a ton of great family pictures. JJ was excited to have someone his age to play with at the Happiest Place on Earth and they were so cute running around together. The boys rode tons of rides and JJ even braved Gadget’s GoCoaster in Toon Town and wanted to go again! Since it was extremely warm, all three boys had a blast playing for a couple of hours in the water area in Bugs Land…JJ’s shoes were wet for 3 days! 

This trip was exactly what we needed to motivate our family for the fight we have ahead of us.  We’re hoping that JJ keeps his memories of Disney fresh so that he fights to get well so he can go back again.  We had such an amazing trip and we will treasure those memories forever.  We can’t even begin to thank Team JJ enough for all of the generous donations that allowed us to take such a fantastic vacation!

On Saturday, August 11, Make-A-Wish unvieled JJ’s custom playground.  John Manchip Playground Design did an absolutely amazing job creating the perfect play area for JJ.  It looks like a train and has plenty of places for JJ to hide and climb. He loves it so much and wants to go out and play on it the minute he wakes up.

The final result surpassed our greatest expectations.  The quality and attention to detail make this a truly special gift.  We plan on playing on the JJ Moisa Express Train for years to come.  Thank you to Make-A-Wish, John Manchip, Coastal Lumber, and everyone who donated to the ground padding fund for making JJ’s wish come true.

Now, on to a more serious matter.  JJ had his tumor resection surgery on Wednesday, August 15.  Just as he always does, he handled it like a champ.  The surgery ended up being 8 hours…8 very long hours of sitting in the cafeteria waiting for the nurse to call us with updates every couple of hours.  The surgery went well and Dr. Sun was happy with the results.  He said he removed all of the solid masses and tried to fix up the soft spots in his skull again.  They opened up the same scar and as always, Dr. Sun stitched him up with machine-like precision.  There are several hundred stitches that look exactly like milimeters on a ruler. 

After surgery, JJ was put in isolation in the ICU (the private suites, as we call them).  He was groggy and crabby, but essentially the same old JJ. It is absolutely amazing that he can have his skull opened up and his brain operated upon and within an hour, he’s talking about the same things as before surgery. He baffles me.   

Even though I kept waiting for the seizures to occur like last time, his recovery was rather uneventful, thank goodness! Between the fear of seizures and the worst chair bed in history, I probably slept 4 hours the whole time we were there (and Jon slept in his truck).  Anyways, I digress.  The neurosurgery team came in on Friday morning and said that as long as his MRI looked good, he could go home that evening.  Thank goodness his MRI was acceptable because we got to go home and spend Friday night in our own beds. 

When we got home, JJ snapped right back into his normal self.  All of his lethergy disappeared and he started bouncing around the house like a normal 3 year old…not like someone who had been in brain surgery 48 hours earlier.  They took the bandages off his head before he left the hospital, so we’re keeping a close watch that Jaxson doesn’t touch JJ’s very visable incision.   

Even though we were only away from home for a few days, being away from Jaxson was EXTREMELY hard.  We missed his goofy little self so much! Jon’s mom, Nancy, stayed at our house with Jaxson, spending her days chasing after him.  Nancy says that when you watch Jaxson, make sure you wear your running shoes! We can’t thank Nancy and Dave enough for all of the sacrafices they make for us.  I don’t know what we would do without them.

So now we are just waiting for JJ to heal so that we can start the next phase of treatment.  Once his oncologist gets the pathology report back, they will schedule his SUPER CHEMO (well duh, what else would you give to a superhero like JJ??), and his bone marrow/stem cell transplant. 

We’ve made it over the first big hurdle successfully.  That’s one checkmark we get to put on our list.  That’s how we look at the road ahead, a bunch of seperate tasks that have to be accomplished one at a time.  Eventually, we hope that all of these small victories will result in an overall win.  We’re hoping every day that this course of treatment does what it takes to destroy these demonic cells.

Thank you all so much for all your positive words and vibes throughout the whole surgery ordeal.  It really touches us that so many people are rooting for JJ and hoping and praying for his recovery.  We are so lucky to have such a great support group. Thank you all a million times over.

Back on the Rollercoaster

When you have a child recovering from cancer, the last word you want to hear is “relapse.” Well, unfortunately, “relapse” has gone from being the word that shall not be spoken, to a word that is now in the forefront of our vocabulary. As many of you know, we’ve received some bad news regarding JJ’s health. His most recent MRI showed that the spot on his brain  has, in fact, grown.  There was also an additional spot that has shown up, causing the doctors to express great concern.  They are basically positive that this new growth constitutes a relapse and that the cancer is back.  We met with JJ’s doctor on Thursday, along with Dr. Finley (the brain tumor guru), and they have started to put together an aggressive treatment plan that will begin over the next few weeks.  The first step will take place next friday; the doctors want to do a spinal tap to make sure that there are not cancer cells in his spinal fluid.  If it turns out that there is, the situation becomes incredibly dire. 

We are keeping our fingers crossed that his spinal tap comes back clean and we can proceed onto the next step in the treatment: surgery.  JJ will have another craniotomy to remove the two spots on his brain (at which time they’ll look at them under a microscope and make sure that it really is a relapse).  They will then give him about 2 weeks to recover from his surgery before they give him another round of SUPER CHEMO (a year’s worth given over 5 days or less) and ANOTHER TRANSPLANT! The huge dose of chemo that he will be receiving is fatal if not followed up by a transplant.  Thank goodness he has a humongous number of stem cells frozen from the last time!

After another 8 weeks of  waiting  in isolation for his cell counts to come back up to a safe level, the doctors will check the status of his brain to ensure that there is no new growth.  As long as that scan comes back clear, JJ will start the final step: radiation.  Although the thought of radiation is scary, we know that it hugely improves his chance of survival. 

Because of all this new information that we’ve been bombarded with this past week, we have decided to change JJ’s Dream Disney Vacation from the fall to next week.  Because it will take JJ so long to recover after his transplant and radiation (plus protective isolation, masks, etc), the doctors have suggested that we take him before he starts up treatment again. The great thing is that JJ is feeling well these days and will really be able to enjoy this special trip.  We can’t wait to experience Cars Land from his 3-year old point of view:)

This is going to be an important trip, not only because we have  been planning on taking since his initial diagnosis, but because it is going to be imperative for our family to spend as much time together as possible before JJ starts treatment.  Jaxson will once again go to stay with his Nana Nancy and Grandpa Dave at Lake Camanche while JJ is inpatient so that we are able to fully concentrate on kicking cancer’s butt.  It breaks my heart just to write about Jaxson going away, as he is a hugely integral part of our family and my total fat little ray of sunshine.  However, we are incredibly grateful that Jon’s parents are willing to completely reorganize their lives in order to help us out with such a gigantic favor, as Jaxson can be like a tiny Tasmanian devil:)

An update on JJ’s Make-A-Wish: Our yard is now ready for installation (Thank You John Santos!!) and (the fantastic) John Manchip Playground Design is working on bringing this dream to fruition.  The only way that we were able to get this project completed is because of the incredibly generous lumber donation made by Coastal Lumber in San Jose.  When this company heard about JJ’s story, they contacted us immediately and asked how they could help.  Because of John Santos, John Manchip, Coastal Lumber, all the members of Team JJ, and Make-A-Wish, we are so close to giving JJ the playground of his dreams! We are hoping that the playground will be installed soon and that JJ will be able to enjoy it while he still feels well enough to do so!

I hate having to update the blog with bad news, but I always feel like the members of Team JJ have a right to know what’s actually going on.  We are undoubtedly scared, sad, and incredibly pissed off, but we will absolutely NOT give up on this little guy.  He has shown us miracles before, and we expect that he will show that same fighting spirit this time around.  We refuse to panic until the doctors tell us that we are out of options (which we hope will never happen).  We are just going to keep putting one foot in front of the other and chipping away at the obstacles that stand between JJ and remission/cure. 

Please everyone, keep our family in your thoughts and prayers.  We have such a battle coming up and we are going to need all the strength we can get.  But before that happens, the Happiest Place on Earth better get ready for the Moisa family, because here we come!

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Hi there, JJ fans:)

We just wanted to take a few minutes to fill everyone in on what’s been going on in the Moisa household. JJ’s last MRI was good news/so-so news. The spot on his brain has gotten slightly larger, but only by about one millimeter. The radiologists and oncologist who reviewed the scans were not overly worried about it at the time because it wasn’t growing like a tumor. Although it was getting bigger, it was only growing longer and not wider, which is not how tumors tend to grow. At that point Dr. T said that they would just continue to keep a close eye on it. A few weeks later at JJ’s regular clinic visit, Dr. T said that if it looks like it has grown any larger in his next MRI, he is going to have the neurosurgeon go in and remove it. He said that any time post-operative changes continue to change, it worries him a little bit and he’d rather see it taken out and biopsied. This is not the news that we wanted to hear, but if he thinks that JJ needs another brain surgery to help improve his overall chances, we’re all for it. His next MRI will be the end or June or the beginning of July, so that’s when we’ll have a better idea of what’s going on.

On a much lighter note, after JJ’s last MRI, we were given a conclusive green light to go ahead with our planned trip to Maui to visit my sister Elisa and brother-in-law John. A quick, but very heart-felt thanks to everyone who helped to make this MUCH needed trip a reality. Although our financial situation is obviously pretty tight these days, because of everyone’s help, we were able to have a seemingly champagne vacation on a Pabst Blue Ribbon budget. My parents generously gave us their flight vouchers that allowed us to fly for practically nothing. Elisa and John let us take over their one-bedroom house and graciously let the four of us sleep in their bedroom while they slept in the living room. Besides completely rearranging their lives to accommodate our brood, they also let us use Elisa’s car so that we wouldn’t have to pay for a rental car. Besides not having to spend money on flights, hotel, or car rental, we also brought an entire suitcase filled with food (including 8 pounds of frozen spaghetti sauce) so that we were able to eat almost all of our meals without having to pay the astronomical Maui food prices. Anyone who knows me, knows how important frugality (ok, fine…cheapness) is to me, so thank goodness for budget travel:)

JJ and Jaxson had an AMAZING vacation (we all did, actually), spending our days going to the beach, the aquarium, doing an amazing hike out to a waterfall, and just wandering around aimlessly. The weather was gorgeous and we seriously could not have asked for a better trip. This was exactly what we all needed to recharge our batteries and we were so happy that the boys got to spend some time with their Uncle John and Uncle Elisa (as JJ affectionately calls my sister for some unknown reason).

On another bright note, JJ was approved by Make-A-Wish to receive a specially designed playground for the backyard. John Manchip of John Manchip design has graciously and generously taken over the project (with MAW’s approval) and has designed an AMAZING playset that specifically takes into account all of JJ’s needs and limitations. The overall cost of the playset greatly exceeds the very modest budget allotted by MAW, so we’re attempting to drum up donations of building materials from local companies in attempt to make JJ’s wish a reality. My sister Elisa’s fundraising website fantastically raised about $2,500 to complete the initial preparation of the ground, as well as to pay for the rubber mulch padding that will go under the playset to protect JJ’s head. John Manchip is donating a large amount of the materials needed, and Jon and I are putting about $2,000 towards the project. It is very important to us that JJ gets a playset that he will be able to use and enjoy for many years to come and we will do what ever possible to see that happen. That being said, if anyone has any lumber connections, we have a list of supplies that we still need to secure. If you happen to know anyone who is either willing to donate the supplies or offer us a discount, it would be hugely appreciated. Leave a comment or send me a message on Facebook and I can send you a list of the materials needed. The support that we have received from our friends and family (and complete strangers) has been astronomical and we count our blessings every day that everyone has been so kind and generous towards JJ and our family. We can’t wait until the playset is built and we can have a big party to celebrate and show our appreciation to everyone on Team JJ!

The Team JJ Disney fund is still safely in a savings account, waiting for JJ to begin his re-vaccination process which will allow him to be around large groups of children. His doctors suspect that his immune system will start to recover this summer and that he should be able to go on his Team JJ Disney trip around the end of September.

Although we never know what the future holds, we are incredibly grateful that our lives are so blessed at this moment in time. We spent the entire weekend out in the backyard, doing normal family stuff…kind of how we had envisioned our lives being before JJ got sick. While no playset or vacation can possibly make up for everything that JJ has been through, we continue to try to make his quality of life as awesome as possible. Thanks again to everyone who has kept JJ in their thoughts and prayers, we appreciate each and every one of you! Love, The Moisa Family

Hi there members of Team JJ,

  I know its been awhile since I’ve updated the blog, but mostly that’s because I’ve been keeping everyone updated via Facebook.  But just in case there are others out there who are not on our Facebooks, I thought I’d fill you in on what’s been going on.

6 weeks ago JJ had his regular scheduled 3 month MRI.  It’s always nerve wracking (we cancer parents call it “scanxiety”), but we really weren’t overly concerned.  JJ was put under anesthesia for about an hour and a half while they did a scan of both his brain and his spine.  He did fine during the procedure and was back at home by noon.  The hospital usually notifies us that same afternoon about the results, mainly so we don’t spend the night worrying that something is wrong.  I started doing just that when by 5:00pm, our nursing coordinator hadn’t called.  My immediate feeling was that something was off, that perhaps they had needed to seek out a second opinion.  After a very restless night, I woke up early and left a message for our oncology nurse, Philippa. 

Philippa called me back later that afternoon, and as it turned out, I was right to worry.  They had found a spot on his brain that looked larger than it had 3 months prior.  This was not what we wanted to hear; the cancer might be back.  JJ’s oncologist, Dr. Torkildson scheduled another MRI for 6 weeks later because they needed to give the spot a “chance to declare itself” if it is cancer.  They said that there’s a chance that it could be an imaging error, for example, the positioning of his head could have been different in the two MRIs, which may have caused the spot to look smaller 3 months ago, when it was in fact the same size.  They also said that it could have been caused by the way that the MRI was cut (it takes the pictures in 2mm squares and then puts them back together).  We are keeping our fingers crossed that it is an imaging issue but we are VERY aware of the fact that ATRT is highly milignant and more often than not reoccurs when treated only with high dose chemo/stem cell transplant. 

When we met with Dr. T in person, he said that this is not something that is highly worrisome, but it does raise concern.  JJ’s next MRI is scheduled for Tuesday, April 3.  After that we’ll have a better idea of what the future holds for the Moisa family.  We are obviously living on pins and needles, waiting to know the answer.  I can’t even let myself think about what we are going to do if the cancer is back.  He’s had such a tough year already and it seems like he’s just starting to feel semi-normal again.  Putting him through another year of hell just seems like torture.  Obviously, if the cancer is back, we have no choice but to go ahead with more treatment.  The doctors have told us that the most likely option is going to be focal radiation.  Because JJ was too young when he was originally diagnosed, his treatment plan didn’t include radiation, but now that he’s 3, it is a viable option.  We are seriously hoping that he doesn’t have to go through that, but we understand that his chances for long-term survival are hugely increased if does go through it.  Children who undergo radiation for ATRT have a 60-70% chance of survival, whereas those who are treated with only high dose chemo have about a 14% chance.  JJ’s chances were even lower than that because of his young age. 

Please keep JJ in your thoughts and prayers on Tuesday, as this is a serious crossroads in his recovery.  The next few days are going to be agonizing, waiting to find out if this is a relapse or not.  Fingers crossed that it is an imaging error, but while we hope for the best, we prepare for the worst.  Love and thanks to all of JJ’s supporters.  All of you make such a difference in our lives!!

A Fresh, New Year!

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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!

An Update For Team J.J.

Keeping his scar dry while taking a bath!

Hi everyone, it’s been a little while since I last did an update and a lot has happened since then.  I know a lot of you saw our brief Facebook posts while we were in the hospital, but I’ll try to give you all a few more details in this update. Sorry in advance that this is a long entry.

On November 4, JJ went in for a cranioplasty, which is essentially a surgery to repair the skull defect that occurred as a result of his tumor removal in March.  In our last update, I went into detail about why he needed the surgery, but basically it was just because the bone was thinning and wasn’t properly attached to the rest of his skull, which was allowing fluid to seep through.  Anyways, we went to the hospital expecting a fairly routine procedure (as if anything that has to do with the head is routine!!), hoping that we’d be in and out in a few days. 

JJ went in for surgery at 8 AM and was scheduled to be under anesthesia for about 6 hours.  Throughout the morning and afternoon we held vigil in the cafeteria, waiting for the nurse to call us with updates every 2 hours.  Everything went exactly as planned and in the late afternoon, JJ was moved from the operating room directly to his isolation room in the ICU.  Dr. Sun, the neurosurgeon, came to tell us that the surgery went smoothly but that JJ had actually had about a 2 inch triangle of skull that was completely missing. To repair this, he scraped some bone off the thick part of JJ’s skull and implanted it with a piece of mesh to fill up the gap.  Using his own bone rather than synthetic is definitely preferable, as the body more readily accepts it.  He also used a bunch of tiny titanium screws or plates (I really should know this stuff…) to connect the floating portions of bone to the rest of the skull. 

When JJ woke up from anesthesia, he was groggy and cranky, but essentially fine.   That next day he was a little sluggish from the pain medication, but had a very good day laying in bed and playing with his cars.  That evening he went to sleep around 9pm, which was great since he had been up until 3am the night before and I was exhausted!!  Around 11pm Jon headed out to his truck to sleep and I crashed almost immediately. 

Around 1am, JJ sat up in bed, looking wide awake, and started asking “where’s daddy? where’s daddy?” I didn’t answer him because I was hoping he’d go back to sleep.  A couple of minutes later our nurse came in and said that she thought that his oxygen monitor was coming off because his numbers were erratic (she had seen them on a monitor at the nurses station).  It did look like it was coming off (its like a band-aid that wraps around his toe), so she started to adjust it.  I was sitting up and watching her, but I started to notice that JJ looked very spacy and was sitting very still, which he never does when a nurse is touching him.  He was staring off into space with a blank look on his face, so I started saying his name, trying to get his attention.  He wasn’t responding even though he was sitting up, but the next thing I knew, his face and lips started turning blue.  I told the nurse that he wasn’t breathing and we both started to panic.  I asked her what she wanted me to do and when she didn’t answer me quickly enough, I jumped over the top of the bed and hit the code blue button.  The ICU doctors and nurses flooded our room, and quickly got an oxygen mask on him.  He started fighting them off, trying to take off the mask; this was a good thing because it meant that he was breathing.  As soon as I saw that he was breathing, I immediately called Jon and told him to get up there.  Even though he was breathing again, he was still acting spacy.  The doctor said that he was acting very typically post-dictal, which he then informed me means “after a seizure”.  I couldn’t believe that he had had a seizure, it wasn’t anything like I had envisioned a seizure to be.  I assumed a seizure would involve a lot of shaking and convulsing, but it was incredibly still and quiet.  I can’t even imagine what would have happened if I hadn’t been right next to him and if he hadn’t been closely monitored. 

At that point we took him down to radiology for a CT scan to make sure that his brain looked ok.  He was still acting strange, kind of listless and still a little spacey.  On the way back from the CT scan, he just kept staring up at the lights on the ceiling of the hallway.  When they got him back into his room, he was sitting up on the bed and he kept saying “Where’s mommy? Where’s mommy?” even though I was sitting right in front of him.  This broke my heart and scared the crap out of us at the same time.  Just a minute or so later, he started staring off into space and was unresponsive again.  His monitor showed that he had stopped breathing again, so the doctor immediately put the oxygen mask on him again and said he had had another seizure.  Once again, he started trying to yank it off, fighting the doctor every time he tried to put it back on.  After that, he seemed to come around and started acting more like normal JJ.  He was asking for specific Cars toys(which thrilled us because it meant that he hadn’t sustained any super serious brain damage), and wanted to watch his iPod.  He was maneuvering through his Ipod like he always does, looking for specific youtube videos.  The doctor was very impressed and said that he was glad he got to witness him doing this because it showed him using his fine motor skills, as well as showing that he was acting normally. Even though he was laughing and identifying different cars on the videos, something still wasn’t quite right.  He’d laugh and then he’d start making a repetitive noise, like he was saying “dit dit dit dit dit”. Jon and I recognized that this wasn’t something he normally did, but before we could point it out, JJ threw up, spaced out, and stopped breathing again.   

Jon and I sat in the corner of the room, watching the doctor resuscitate our son.  Throughout this whole 9 month nightmare, this was by far the scariest night we’ve ever had.  We really didn’t know what was wrong with him and watching the 2 doctors and 8 or so nurses all stand around the bed was like something out of a movie.  The doctor was yelling orders to the nurses in what sounded like another language in order to prepare to put a breathing tube down JJ’s throat. They asked us if we wanted to leave the room, but there was absolutely no way that was going to happen.  JJ looked so tiny and helpless laying in the bed unconscious with the doctor standing over him, with the most intense look of concentration I’ve ever seen.  It was heartbreaking and completely terrifying.  After what felt like ages, the doctor got the breathing tube in and JJ started to stabilize.   I was watching the doctor make notes afterwards and his hands were shaking like a leaf even though he had been steady as a rock while he had been working on jj.  I assume his adrenaline was pumping like mad…I know ours was!

After the doctor was done, the nurses put restraints on his arms to keep him from pulling out his breathing tube if he started to wake up.  The plan was to keep him unconscious for about 18 hours and monitor his breathing and his brain waves (they had put about 50 electrodes onto his head).  For the next 18 hours, there was always a nurse in the room watching JJ.  It was 4:30 am (and of course the time changed that night so we had an extra hour of being awake during this ordeal) so Jon and I took turns sleeping for an hour at a time in the fold out chair while the other one slept sitting upright in a plastic chair. 

The next evening, the doctors believed JJ was stable enough to take out the breathing tube and let him wake up.  About 20 minutes of being very groggy, the JJ that we know and love was back.  We were incredibly relieved that he seemed to be normal.  With the nurse still in the room, that night I slept like a rock!! 

The next day was total and complete drama.  I won’t go into great detail, but needless to say, the ball was seriously dropped in terms of JJ’s care.  Because JJ is post-transplant and has no immune system, it was completely mandatory that he was kept in isolation, away from all the germs in the ICU.  Anyway, it was decided that another kid needed the isolation room more than JJ did and he was kicked out into the general part of the ICU.  I called everyone I possibly could and no one would do anything.  All of these same people had assured and promised me that JJ would absolutely be kept in isolation, but suddenly no one would do anything.  They started saying that his immune system is fine (it isn’t and they knew that because they had run immune tests the day before and said that it was still too immature to do any further testing), and they said that he didn’t even need to wear his mask (wrong again…).  We were besides ourselves because no one was listening and the doctors were actually being very rude, condescending, and antagonistic.  Thankfully JJ’s social worker witnessed the treatment that we were receiving and gave me the information on who needed to be contacted in order to report this.

After spending 24 hours in the general ICU, neurosurgery came to check on JJ and was absolutely appalled that he had been taken out of isolation.  They started demanding that he be isolated and when they were unable to find him a bed, they decided that it was safer for JJ to be discharged than to keep him out in the open.  We were extremely relieved.

JJ did absolutely fine once we got home.  He is now on anti-seizure medication and will continue to take it for at least 3 months.  He had an MRI on Wednesday that looked clean. The neurosurgeon looked at his skull yesterday and wants to see him again in 2 weeks.  His head is still squishy, so he has to wear a thing around his head that looks like a tight mesh sweat band.  Hopefully his body will start to absorb the extra fluid or else we might have to start seriously considering having a shunt put in.

Today we met with the neuro-oncologist who informed us that he wants to put JJ on oral at-home chemo.  He will be taking one drug (vorinostat) 2 times a day for 14 days a month and he’ll take a second drug once a day, four days a week.  The second dose is actually high-dose Accutane, which apparently they use a chemotherapy drug in addition to curing acne.  He’ll be on these drugs for a year, but when they are used after the initial treatment and transplant, they are supposed to be successful at helping to keep the cancer from coming back.  While we know that there are absolutely no guarantees, we will do whatever it takes to help JJ stay cancer-free. 

Again I apologize for the length of this update.  I felt like everyone really needed and deserved to know what was actually going on.  It was hard to truly express what was happening via short posts on Facebook, so I figured I’d use the blog to fill in all the blanks.  Thank you to absolutely everyone who sent us positive messages and support.  It was really helpful in terms of keeping our spirits up during this highly stressful time.  JJ is a little superman and is absolutely our hero.  He’s been through more than anyone should have to experience in ten lifetimes.  He is the sweetest and funniest little guy and we are SO grateful that we have him in our lives.  He’s a champion.

Our Little Hero…

It’s that time again, time for another Super-JJ update!!  Sunday, October 9th marked JJ’s 100 days post-transplant.  This is an important milestone in the world of bone marrow transplants because it marks the point when he begins to be monitored much less frequently.  I’ll start out by saying that he is doing incredibly well, considering everything that he’s been through this year. 

JJ was given the transplant department’s stamp of approval, meaning that they ran a barrage of tests and decided that he was doing well enough post-transplant to be transferred back to the care of the Neuro-oncology department.  His blood counts are holding steady and he no longer requires weekly blood draws at home (yay!).  His initial immune system testing showed that his ability to fight off infection is still very limited and wasn’t worth doing any further in-depth testing at this point.  While we were hoping that he’d be further along, the doctors reassured us that it can take upwards of a year to get his immune system functioning at a relatively normal level and they’ll check again in 3 months. 

JJ no longer has to go to weekly clinic appointments and will only be seen about once a month.  He was taken off his overnight IV feeds because they believe that he is eating and drinking enough to properly sustain him and flush his numerous medications through his system.  He still has his line in his chest, but because it is no longer being used, we hope that it will be removed very, very soon, since this is where his greatest chance for infection comes from. 

Two weeks ago we met with Dr. Sun, the neuro-surgeon who performed the 34+hours of surgery to remove JJ’s tumor.  As we suspected, he wants to go back into JJ’s head to help reinforce his skull where the incision was made.  Because his tumor had been so large, the pressure of it pressing against his skull caused the actual bone to thin.  After his surgery, the thin edges of the skull along the cut began to disintegrate and prevented it from healing properly.  This means that the piece of skull that was cut (from right above his ear, down along the back of his head and directly up the middle to his forehead), is just sort of floating there without being attached to the rest of his skull. Because the brain fluid isn’t being properly contained, the side of his head is squishy and soft (it really does feel as icky as it sounds when you touch it).  The surgery will hopefully correct this by using pieces of metal to bind the floating bone to the rest of the skull and may require the use of some synthetic bone to make up for the disintegration.  Although it sounds complicated, the neuro-surgery team made it seem as though it is fairly routine.  The most serious risk is that of infection, but as long as that doesn’t happen, JJ should only be in the hospital for 3-5 days.  Because his immune system is still highly compromised, he will be in an isolation room within the ICU to help prevent him from coming in contact with all the various germs. We’re keeping our fingers crossed that we are able to get our favorite ICU nurse Maria who took care of JJ before and after his tumor removal!!  His surgery will probably be in the next few weeks, and although we are dreading going back to the hospital, we are anxious to get this next bump in the road over with. 

  Our days right now consist of helping JJ catch up on all the skills that he should have been mastering during the 6 months that he was locked up:) We’re deep in the trenches of potty-training, and working hard to normalize the meal-time experience (use your fork; no you can’t have all 972 of your toy cars on the table with you).  Jaxson celebrated his 1st birthday last week and had a fantastic time with his friends and family, eating cake like it was going out of style!!  We wish JJ had been able to come help his little brother get his party on, but hopefully by next year, JJ will be back in action!!

I had really thought that this was going to be a short blog entry, since it seems like not too much has happened in the last month or so.  But anyone who knows me, knows that keeping it short is not one of my strong points:)

Life on the Outside

Hi there, friends and family!  It’s time for another update on JJ’s condition to help keep everyone in the loop.

JJ has been home now for about 3 weeks, the longest that he’s been out of the hospital since this nightmare began!!  He’s enjoying every day and is living it up like a fairly normal 2-year old.  He has clinic appointments at the hospital every Thursday for monitoring, which will continue for quite a while, I imagine. 

JJ had his first post-transplant MRI two weeks ago, which was looking for any new cancerous growth or abnormalities.  While his brain looked clean, his spine showed an area of fluid building up.  This condition is called a “Thoracic Syrinx” and is basically a sack of brain fluid that isn’t draining properly.  While it sounds serious (at least it does to me), the doctors are not overly concerned with it.  They just plan on keeping an eye on it to make sure that it doesn’t press up against any nerves.  It’s not a life-threatening condition, but it could cause some neuropathy or nerve damage.  Because of this, he’ll probably receive MRI’s more frequently than was originally planned.

Towards the end of September, JJ will be transferred from the Bone Marrow Transplant department (BMT) back to the Neuro-oncology department, where he started out.  This means that BMT is satisfied with the results of the transplant and he will be managed by the neuro-oncology doctors and nurses from here on out.  Hopefully by then he will be ready to have the line removed out of his chest and we can stop giving him overnight IV feeds and finally be done with all the daily line maintenece.  Other than that, there really isn’t much else to report, medically speaking. 

On a lighter note, we are super excited to announce that JJ once again has eyebrows and eyelashes!! You truly don’t realize how important they are until they are missing.  His hair is also starting to grow back, making it look like he’s got a buzz cut.  Believe it or not, these simple little things are making him look a lot healthier!!

Because JJ can’t be around a lot of people, we spend our days just hanging around the house and going for long walks.  While it may sound boring to some, this is exactly the existence that we’ve been looking forward to!!  He wears his mask (which makes him look like a duck), any time he’s outside, in the garage, or in the car.  It’s so great that he doesn’t fight us about the mask, because  a lot of kids absolutely refuse to wear one. My only issue is that people constantly stare at him when we’re out walking…I want to tell them “Go ahead and stare, you are witnessing a true miracle child who’s been through more than you could even imagine!!”

It’s definitely been a huge, exhausting adjustment being home again.  When all of this started, Jaxson was just a tiny little baby who was pretty much stationary.  Now he is almost a year old and is into EVERYTHING!! Jaxson loves being home with the family and has adapted very well to his role as little brother.  He loves to take JJ’s toys and Ipod, showing us exactly the type of little bro he is going to be…a pesky one:) 

Once again, we just want to  extend our sincerest thanks to all our friends and family for the immense support that we have received over the last several months.  You guys are amazing, to say the least. The Team JJ wristbands have been a huge success, raising $4,500 towards JJ’s future Disneyland adventure.  We’re hoping that this time next year, JJ will be living it up at the Happiest Place on Earth!! Thank you everyone for helping to make this happen!!