Tag Archive: jj moisa

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!