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Hanging in and Hanging Out

Another JJ update for all our fellow Team JJ members:)
JJ continues to recover fairly well from his Super Chemotherapy and his bone marrow transplant. He’s been an amazing little trooper, toddling around 5-South with his funny little flat-footed walk (one of his chemo drugs causes a foot drop, which makes him off balance because he’s not walking heel to toe).
On July 18th, the doctors decided that JJ was doing well and his counts were high enough that he could go home. We were so unbelievably excited because we had planned on being in the hospital for 6-8 weeks and it had only been 4! JJ’s recovery was one of the fastest on record, as 17 days post transplant is practically unheard of!! The nurses had only seen one kid recover more quickly!! We were so proud of our little rock star!
JJ was absolutely thrilled to go outside and wait for dad to pull he car around since he hadn’t been outside in over a month. It was strangely sad to leave the hospital. Not only did it feel really safe being there, but we had made a lot of friends who could empathize with our exact situation. The night before we were discharged, I started to cry…Jon looked at me like I had grown a second head and said that he really needed to get me out of there…it was kind of like Stockholm Syndrome!!
Our first night home was uneventful, we just enjoyed being in our home. It was funny when JJ told Jon “Daddy, go playroom!” because that had been our nightly routine in the hospital.
It was amazing to be home, especially since it seemed like forever since we’d had any peace and quite, without nurses coming in every hour to take JJs vitals, weigh his diapers, or check his iv pumps. Jaxson would come home in a couple of days once we had gotten JJ settled and we’d be complete once more!!
At home, JJ still had to receive IV nutrition over night because he wasnt eating. They had taught me how to set up the pump and hook him up to the IV before we left the hospital. That night we all slept like a bunch of rocks, in our own beds, right where we belonged.
The next morning, JJ woke up looking funky. His eyes looked sick and he threw up as soon as he got out of bed. When we went downstairs, he just laid on the couch and wouldn’t get up. I started taking his temp immediately and saw that it was a little high. While a temp of 99.4 isn’t all that high in a healthy child, for an immunocompromised kid, it is a red flag. I continued to take his temp every 30 minutes, watching it slowly climb, waiting for it to hit the danger zone (at 100 degrees, he’d have to go back to the hospital). As he laid on the couch, I ran around and started doing laundry and making sure our bags were ready to go back to the hospital. Sure enough, around 3pm, he broke 100 degrees and we got in the car and headed back to good old Children’s.
As soon as we got there, they took his vitals and sure enough, his temp was 101, so they suspected an infection. They drew blood cultures and sure enough he had 2 different bacterias in his med line that were causing the fever.
Because he has no immune system, the normally harmless bacteria that live on everyone’s skin were not so harmless for him. He had a strain of staff infection and had to be put on high dose antibiotics. Of course because noting is easy, he had a reaction to the antibiotics and started itching like crazy. He had to remain on the medicine, but the rate at which it was given was slowed down and that stopped the itching. Because he his blood platelets are so low, if he were to started bleeding from itching, his blood wouldn’t clot properly and it could cause serious problems.
The doctors told us that jj would have to stay in the hospital until he completed the course of antibiotics, which would take 2 weeks. While we weren’t thrilled about that, we knew that he’d be well-monitored and besides which, we had planned in being in the hospital for 6 weeks anyways.
JJ had no issues with being back in 5-South, and as a matter of fact, when we walked through the double doors, he did a happy sigh and said “home”, which kind of broke my heart! He was thrilled to see his “big sister” Gabby and his “little bro” Baby Dawson! And we were all lucky to now have the opportunity to get to know Baby Tony and his mom, Maria, who is one of the sweetest people I’ve ever met!
Although it was nice to be back around people who can truly relate to what we are going through, I’d be lying if I said we weren’t counting down the days until we could go home. The docs told us that over the last several days that JJs blood cultures were coming back negative for any bacteria, which was fantastic. The countdown was on!!
And then once again, another wrench was thrown into the works. With just a little over a week left on our sentence, the cultures found bacteria (enterococcus) growing once again. This means that our countdown started all over again and now we have to wait another 2 weeks!
Although It seems like forever, there’s no point in getting mad about it because it’s out of our control. As of today, we’ve spent 97 nights in the hospital. On the bright side, we’ve got a much larger room that has a view of the entire bay. I can lay on the window seat and see all of the San Francisco skyline and both the golden gate and the bay bridge. I can also see the constant parade of cop cars driving down Martin Luther King:)
Jon and I will be celebrating our anniversary on Thursday (10 years together, 4 years married). While there won’t be any fancy meals or expensive gifts this year, just getting jj back to health is enough for us. I’m incredibly lucky to have a husband who’s such an amazing father and who has been an absolute rock through all this. I seriously don’t know how I could have done it without him.
As always we have to thank everyone for the overwhelming support. We sincerely appreciate all the effort that’s been made on JJ’s behalf and we can’t wait to be able to thank everyone in person. Love you all!!

And congratulations to Baby Dawson, who gets to go home tomorrow with a clean bill of health. At 7 months old, he’s been battling leukemia since he was 6 weeks old. His parents, Mandy and Dave have been by side every second, fighting the fight for this precious little guy! Mandy is an amazing person who has basically served as the Ambassador to 5-South. She makes everyone feel at home and helps all the new people learn how to survive this high-stress lifestyle. Congratulations on Dawson’s release, we’ll miss you!! See you on the outside!!

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Hi there all you JJ fans…here’s an update on our little Chemo-sabi:
JJ started his round of super chemo on Thursday, June 23. He did pretty well through the 6-day round where he was given a year’s worth of chemo. The funny thing about chemo is that the side effects don’t kick in until several days afterwards. He did manage to start pulling out his internal line (its like a chest port), and had to have it reinforced, which was kind of scary. During the chemo, he had to take 3 showers a day to keep the drugs from giving him chemical burns and has to take one a day for the remainder of his stay. This also means that he had to have his bandages that cover his port site changed 3 times a day too, which he absolutely hates! He also has to wear a very stylish mesh tank top (circa 1984) to keep his bandages in place, so he looks very Vince Neil-ish:)
On July 1, he had his bone marrow transplant. They brought in his stem cells in a cryogenic portable freezer and defrosted them right next to his bed. Transplant day is a big deal around here, with banners and balloons to help celebrate the birthday of their new bone marrow!
The transplant itself was only about 20 minutes long, and JJ handled it beautifully. It is very similar to a blood transfusion where the stem cells are inserted directly into his chest line. Most kids get very nauseous and throw up during the transplant because the preservative used to store the stem cells has a very strong smell that they can taste. JJ didn’t get sick, but it was hard for me to hold down my breakfast since he smelled like he had bathed in rotten tomato soup after eating nothing but garlic for a month. That smell lasted about 24 hours.
After his transplant he was up playing in the playroom and walking around the 5th floor. Everyone was pretty amazed that he was handling it so well. Since the transplant, his blood counts have continued to drop (his white cells are less than 100, when 11,000 is the low end of normal),and they’re expected to bottom out around Thursday or Friday. He’s hardly eating a single thing, but hes on IV nutrition to keep him as nourished as possible. He throws up every day, and may be starting to get mouth sores, but they say this is normal and expected.
So as of today, we are doing everything possible to keep him entertained and comfortable. As long as he still wants to go to the playroom, we are happy! Hopefully we’ll be able to go home in a few weeks after his counts start to recover. However, even once that happens, he’s still not out of the woods. His immune system will still be very weak and he won’t be able to be in crowds of people for 6 months to a year. His diet will continue to be very strict to help prevent him from getting any food-born illnesses that could be very severe for a person with limited immunities. He’ll be coming to the outpatient clinic very regularly for exams, treatments, and possible transfusions. He won’t have the tubes removed from his chest for several months and will continue need me to draw his blood at home for quite a while. We also found out that after his counts come back up that hes going to need another surgery to reinforce his skull because it’s not healing well on it’s own. The neuro-surgeon wants to shore it up to keep it from protruding any more than it already is.
So needless to say, JJ isnt out of the woods yet, but there is a light at the end of the tunnel!
Here’s a few afterthoughts from a mentally and physically exhausted mommy:
While we have been truly touched by the love and support of so many, shame on those of you who have been causing much unneeded drama. You know who you are, and it’s been absolutely ridiculous to witness the crap that’s been thrown our way during this whole ordeal. Please don’t think for a second that when this is all over, that we will ever forget the sheer inappropriateness of your behavior. They say that times like this bring out the best in people, but clearly it brings out the very worst in people too.
On a lighter note, we feel very lucky to have met such great families who are going through similar situations. It’s been amazing to have people to talk to who can truly understand what we are going through. We really feel like we’re forming life-long bonds, and JJ loves his new buddy, baby Dawson (or baby Doo-sin, as he calls him), who has been a great surrogate little brother while jaxson is on vacation!
On Thursday, the Pixar animators are coming to the hospital to visit the kids. They’ll be doing a private screening of Cars 2, and will be drawing pictures of the characters for the patients!! We are super excited and can’t wait! Cars is JJs absolute favorite movie and it will be amazing to get a picture that we can frame for the wall of his Cars-themed bedroom!!
Please keep the positive vibes coming JJs way because he’s going to feel worse before he feels better. We love you all and appreciate the vast amount of support that we’ve been shown. Go Team JJ!!

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Going Forward

Well, it’s time for another JJ Moisa update…here we go again!!
JJ had a rough time with his third round of chemo. After being discharged after 8 days in the hospital, it became clear very quickly that he wasn’t feeling well. He couldn’t get off the couch, he wasn’t talking, and he just looked sick. After being home for a couple of days, he spiked a 103 degree temp and had to be readmitted to the hospital. He spent the next week getting blood and platelet transfusions in an attempt to bring his blood counts back up. After 5 days or so he started feeling better, but they kept him a few more days just to be on the safe side.
He was so excited to get home, even though he had appointments every single day back at the hospital. He was having a barrage of tests done to make sure that he was strong enough to go ahead with the bone marrow transplant (BMT). He had another MRI of his brain and spine, which looked pretty good. They said there is one abnormal spot on his brain, but that they think that it is scar tissue left over from his brain surgery. They will probably forever be monitoring this spot to make sure that it doesn’t develop into something more serious.
We met with the BMT team last week where we were shown the plan of attack. JJ will be receiving ridiculously high doses of chemo for six days starting on Wednesday (a years worth in 6 days). During this time, he’ll develop serious mouth sore that will go down his entire intestinal track. He will have to shower at least 3 times a day because them chemo will come through his pores and can give him chemical burns if it’s allowed to sit on his skin. Then 2 days later they will do the transplant.
After the transplant, it will take at least 4 weeks for his bone marrow to start producing blood cells again. His immune system will essentially be non-existent. He’ll have a very strict diet to prevent him from getting any type of food born illnesses since his body won’t be able to fight it off.
Once he starts producing his own blood cells again (4-8 weeks), he will be allowed to go home, but will continue to be monitored very closely. He’ll still constantly have outpatient appointments to monitor his blood and bone marrow production. He’ll continue to receive blood and platelet transfusions for several months. His immune system won’t recover for 6 months to a year. When he’s healthy again, he’ll have to have all his vaccinations all over again because the chemo will fry all his antibodies. The BMT doctor told us not to expect to live a normal life until JJ starts kindergarten…that seems so far away:(.
So tomorrow we go back to the hospital and won’t go home for almost 2 months. It’s exhausting just thinking about it. I feel so bad for JJ that he has to go through all this. He’s been so strong so far, but nothing can prepare him for what’s to come. He’s already so skinny, with dark circles under his eyes. We just keep our fingers crossed that his little body is strong enough to handle such hardcore doses of chemo and the transplant itself.
Thank you to everyone who got JJ bracelets and made donations to his future Disneyland trip. We are absolutely overwhelmed by the amount of support that all of our friends and family have shown. We are waiting for our next batch of bracelets to arrive so we can mail out some more!! We love and appreciate everyone who has been cheering for JJ!! We can’t thank everyone enough!! Please keep JJ in your thoughts while he’s undergoing his Super Dose of chemo and bone marrow transplant!! ❤

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Good News!!

JJ has completed his second round of chemotherapy like a champion.  While he was still sick and tired, he wasn’t nearly as depleted as he was after the first round.  He didn’t throw up nearly as much and had more energy than before.  He was only in the hospital for 8 days this time (thank goodness), and was able to go home without having to be tube-fed.  We kept waiting for him to hit his rock bottom like he did last time, but he never really did. 

Yesterday he went in for an MRI of his brain and spine to determine whether there was any new cancer growth.  If there was new growth, it would mean that the  chemotherapy regiment was ineffective in treating his type of cancer.  Because his cancer is so rare, the whole regiment was somewhat experimental.  The doctor’s really had no idea if it was going to work.  After hanging around at the imaging center most of the day yesterday, (Thank you Jessica for helping out with Jaxson), we went home hoping to hear from the doctors as soon as possible. 

Today JJ had another hearing test and a dose of outpatient chemo.  After the hearing test, we met with the head oncology nurse who told us that the MRI looked great.  She said it was examined by both the head neuro-oncologist as well as the radiologist and both of them agreed that there was no new cancer growth!!  They will continue to keep an eye on it to make sure that this continues, but so far so good! They said that he is handling the chemo like a rockstar and should be ready for his next dose by next Wednesday. 

After his next dose, they will do another MRI, a spinal tap (to make sure that no cancer has traveled into his spinal column), and scans of both his kidneys and his liver.  Then he will be ready to enter the bone marrow transplant stage.  Within a few weeks of his next dose of chemo, he will start receiving the “super dose” (the year’s worth of chemo given over a week) and then they will do the actual transplant (which from what I understand is kind of like a blood transfusion) soon after, if not immediately. 

JJ is not eating very well and is pretty much existing on a liquid diet of supplement drinks.  His appetite is almost non-existent and he is definitely losing weight.  His face looks thinner every day.  He won’t eat any of his favorite foods and meal time has become somewhat of a battlefield.  If anyone has any suggestions on foods that will help fatten him up, please let us know.  He won’t eat anything sweet right now, so ice cream is out of the question:)

We are so happy that things are progressing as well as they are. It really makes us feel like there is a light at the end of this horrendous tunnel.  While he isn’t out of the woods yet, its hard not to feel optimistic!!

When all this is said and done, we hope to take JJ on a fantastic trip to Disneyland.  We’ve ordered silicone bracelets that say “Brain Cancer Sucks” and  “Go Team JJ”, that we will be exchanging for donations in hopes of raising enough money to take him on a trip of a lifetime.  I’ll let everyone know as soon as they arrive!! Thank you everyone for your continued love and support!

Here We Go Again!!

We’ll it’s been awhile since we’ve updated the blog…a lot has gone on throughout the last 3 weeks or so…
After our last post, JJ was discharged on April 16. We were home for 18 hours (11 of which we were sleeping), when JJ spiked a fever and had to be readmitted to the hospital. Jaxson had been home for about 3 hours (2 of which he was napping) before he had to go back to his grandparent’s house.
JJ was very sick from his chemo, and even though his fever went down almost immediately, he was incredibly nauseous and barely able to lift up his head. He was throwing up fairly frequently and pretty much stopped talking all together. He was sweating like nothing I (or the nurses) had ever seen before. About 90% of his hair fell out within a 24-hour period, leaving him with just his bangs (it’s pretty cute:). He needed 2 blood transfusions and 1 platelet transfusion to get his blood counts stabilized. A normal number of white blood cells (your infection fighters) is 5,000-11,000…JJ had less than 100. He had a feeding tube in his nose, which he threw up 5 times and had to have it reinserted through his nostril and down his throat into his stomach.
After about 8 days of feeling very low, JJ started feeling better. He started sitting up in bed and stopped throwing up. He wanted to play with his cars again and sat in the window seat waiting to see the medical helicopter. They finally discharged him a couple of days before Easter.
Once we got home, he improved dramatically. He yanked out his feeding tube, but was getting enough calories to sustain himself. He wanted to play outside every day, which was great since the weather was beautiful and uncle Sean and aunty Janet had bought him a fantastic playset. It was practically impossible to get him into the house!
The following week he had his stem cells harvested, which were to be frozen and used for his future bone marrow transplant. His blood counts were recovering so well that they were able to harvest enough for 10 transplants! The neuro-oncology nurse said she couldn’t remember ever seeing numbers that high! This is great because it means that his body is bouncing back after the first round of chemo. Besides his bald little head, the only other symptoms that he was displaying was weakness is his toes (called ‘foot drop’) which greatly affected his walking, causing him to trip constantly.
Over the next few days my parents were visiting (affectionately referred to as ‘granny and g-ca’). JJ had a blast showing off and having a new audience to entertain. He felt pretty good, which makes it that much harder to bring him back to the hospital for more chemo.
We’re hoping that it will be slightly easier this time around (at least for us) because we know what to expect. Even when JJ is at his very lowest, we know there is a light at the end of the tunnel, a couple of weeks when JJ will feel close to his old self. Nothing about this journey is easy and every minute of every day I wish it wasn’t JJ going through this.
Its hard not to get angry when I think about all the people who are unfit parents, who shouldn’t be having children, who get to have perfectly healthy kids. It pisses me off when I hear about people who have had cancer and have squandered their second chance at life. It’s practically impossible not to get mad when I hear people complaining about the little stuff in life that is completely insignificant. I hate hearing that trite diatribe that “everything happens for a reason”… I just want to scream “no!! Sometimes there is no reason…sometimes its just a freakishly mutated renegade cell that has run amuck! There is no reason that a 2-year old should have a potentially lethal form of cancer.” While it can be hard to stay positive at times, I have great faith in science and medical technology and all I can do is stay strong for JJ and keep on hoping for a favorable outcome. Please keep him in your thoughts!

JJs Progress Report

JJ started his chemo treatments last Wednesday and has now completed his first round! But let me backtrack a bit, to last Friday…
On Friday, while Jon was here at the hospital on his lunch break and Carolyn was here keeping me and JJ company, we got an unexpected visitor. His name is Dr. Finley and he’s one of the country’s leading experts on pediatric brain tumors. He is the person who created the chemo protocol (treatment plan) that JJ is currently doing and he came up from LA to personally look at JJ since his diagnosis is so rare.
He had looked at JJs tissue samples under the microscope on several different occasions and was very familiar with JJs medical history. He started by saying that JJ didn’t look like a kid who was undergoing chemo because be was still so lively. He then said that his tumor removal surgery was extremely successful and that is greatly to JJs benefit. Next he said that patients that are over 21 months do much better in the Head Start program, regardless of whether they are receiving radiation or not (they won’t do it until a child is 3). Dr. Finley told us that he has one other patient right now with the same diagnosis as JJ (ATRT with the presence of the gene INI1) and that he is responding very well to the treatment. He concluded by saying that although there are never any guarantees, he thinks JJ is going to do well.
We could not have asked for better news at this point in our journey!! This is what we are going to have to keep in mind when things are feeling overwhelming. The doctors have also changed his course of treatments. Instead of 5 regular rounds of chemo before the super dose and the bone marrow transplant, now he’ll only have 3 regular rounds before the super dose.
JJs chemo went as well as could be be expected. He’s very nauseous and gags at the smell or even the sight of food. He had to have a feeding tube put into his nose so that he’s getting enough nourishment. His blood counts are getting pretty low so he’s entering into the stage where he’s very susceptible to infection. We were supposed to go home on Wednesday, but the chemo hadnt cleared his system. Then we were supposed to get discharged today (Thursday) but his sodium levels are low so they need to keep an eye in them for a little while longer. Now they’re telling us that hopefully we’ll go home tomorrow, unless he spikes a fever, which they highly suspect he might. If he doesn’t get a fever, it’s more likely than not that he’ll get one when we get home, at which point we’ll have to come right back:( they told us the other day that kids who live more than 50 miles away don’t get to go home at all through this whole ordeal, so I guess we’re lucky if we get to go home for even a minutes.
I really wanted to get home so that Jaxson can come back…I’m missing him like CRAZY! Keep your fingers crossed that we’ll sleep in our own beds for at least a few nights and please keep JJ in your thoughts!

A Tough Road Ahead

It’s been a rough few days but nothing compared with what’s to come. Last Thursday JJ had an MRI that took practically all day and although the results looked good, they scheduled another spinal tap and a procedure to drain the fluid that was accumulating between his skull and skin for the following day.
At 6:45 on Friday morning, Carolyn and I dragged JJ and jaxson back to the hospital. After several hours of waiting and one hour in the operating room, JJ was given back to us with his head tightly wrapped and in A LOT of pain. They had given him morphine, which has absolutely no effect on him. After several agonizing hours of constant crying, he finally fell asleep. We now know that his head was wrapped much too tightly and the bandage was rubbing great big sores onto his forehead!
After that, Jon and I had our official meeting with the neuro-oncologist. He laid out the treatment plan and told us all about the side effects, which includes, among a ton of other things, kidney failure and permanent hearing loss (40% of kids need hearing aids afterwards). After listening to an hour and a half of potential side effects, and still not knowing definitively what specific type of tumor he had, Jon and I left the meeting feeling very overwhelmed and somewhat dismayed. We knew that it was going to be intense but truly didn’t appreciate how serious it really is.
By the end of the weekend we knew what we had to do, now that it had all sunk in. We felt more positive about the treatment plan and were ready to get started with the chemo on Tuesday. Monday afternoon that all changed. The neuro-oncology nurse called to tell us that JJ had officially been diagnosed with an ATRT (Atypical teratoid rhabdoid tumor), a very rare brain cancer that is incredibly deadly. Only 30 kids a year (about 3% of all brain tumors) are diagnosed with an ATRT and the survival rates for children JJs age are very low.
The next day we found out that JJs case is even more unique because while most people with ATRT are missing a specific gene, JJ isn’t. Only 4 kids a year have this diagnosis. Everything I read online said that the chances for survival in a kid jjs age is less than 10%…I’ve never wanted to crawl into bed and hide like i did yesterday afternoon.
We couldn’t believe this. We were so angry and incredibly sad, how could this seemingly healthy and beautiful little guy be under a fatal attack as we were speaking?
After a very emotional night, we headed back to the hospital to meet with the neuro-oncologist before JJ was to have his port put into his chest. We told the doc that we wanted him to be straight with us. He said that he definitely thinks that it’s worth doing the treatment plan, and while the statistics aren’t good, they’re not quite as devastating as we originally thought. He said he thought jjs chances for survival are greater than 10% but less than 50%. Not fabulous odds, but we’ll take it because that’s all we have.
Hearing that our child has such a tough road ahead of him, which may or may not pan out, is heart-wrenching. How do you prepare yourself for the fact that your child could die?!? So far we just keep looking at the positive aspects, such as the fact that his tumor mass was successfully removed, which is definitely in his favor.
We honestly believe that JJ is super strong and super tough. If anyone can push through this mess, it’s him. He’s a fighter and he’s got everyone pushing for him. He’s our hero.
Please keep him in your thoughts as he starts chemo tomorrow evening.

Our SUPERHERO!!!

Home Sweet Home!!

After exactly three weeks in the hospital, we were finally allowed to take JJ home!!  The doctors and nurses have been monitoring him closely and decided that there was no reason to keep him under constant supervision.  He’s been doing really well the last few days, running all over the place and going to the hospital playroom daily.  The playroom is what motivated him to start sitting up by himself and then ultimately pushed him to start walking again.  He’d sit on the padded mat on the floor, looking at the kitchen playset on the other side of the room, and finally just stood himself up and wobbled over to it.  JJ loves a kitchen…he’s going to make some woman very happy someday!

We will be home for about 10 days before we have to go back for inpatient treatment.  On Monday, April 4th, JJ will have his Powerline put in, a catheter/port where the doctors will  directly inject the chemotherapy drugs. After that they will run a variety of tests on him before starting the actual chemo about 24 hours later.  This stay in the hospital will probably be around 9 days. 

The oncology staff has told us that children JJ’s age do very well in this intensive chemotherapy program.  Because he is very young and doesn’t conceptualize what’s going on, he won’t have the same sort of depression that often happens to older children and adults.  While the success rates for this program are only 60-65% (meaning that 60-65% of children will be cancer free at the end), these rates don’t take individual strengths and personalities into account.  JJ is a strong, stubborn little guy who has surpassed every doctor’s expectation at this point.  I have no doubt that he will continue to persevere. 

While I am confidant that he will make it through the program, I am under no delusions about the seriousness of the situation.  It is going to be an extremely hard year.  JJ is going to be sick, weak, and definitely out of sorts.  He’s going to hate the fact that he won’t be able to go to the park or have playdates with his little friends.  Its going to be rough keeping him in isolation, not leaving the house except to go to the hospital, but this is what is going to keep him alive. 

The hardest part is going to be keeping him away from the friends and family who love him.  Because his white blood cell count is going to be incredibly low, his susceptibility for illness is going to be extremely high.  He won’t be able to fight off colds and flus, so we won’t be able to risk having him exposed to any unnecessary germs.  We wish that we could have everyone we love rally around him, but I suppose it’s just going to have to wait until this whole ordeal is over.  I really hope that everyone understands and doesn’t take this personally…I hate that part of my new role is going to be that of germ-warden!! More than anything, I just want my little guy to be as healthy as possible through this process, and if I have to turn him into the boy in the bubble, so be it:) 

The support that we have received at every point in this journey thus far has been amazing.  We feel incredibly lucky that we have so many people who care about our family.  I hope that someday in the future we will be able to thank everyone individually for all the positivity that has been sent our way.  We love you all tons and are incredibly grateful for each and every one of you.  Please keep JJ in your thoughts…

A Dark Day

(This is Holly writing…its 2:22 AM and Im doing this from my phone, so please excuse any typos).

Cancer is a word that no parent should ever have to hear in relation to their child. Today our worst nightmares became a reality: JJ has brain cancer. Even though we were well aware that this was more than likely the case, nothing prepares you to hear those words.
      The neuro-oncologist met with us on Thursday afternoon to discuss our plan of action. While the tumor removal was successful, he explained that this sort of tumor grows fingers that embed themselves in the surrounding brain tissue. With radiation out of the question because of his age, our only real option is program called “Head Start,” a very aggressive and intensive regimen of chemotherapy. JJ will have to come to the hospital and stay for one week every month for five months to recieve treatments. After that, the next step is one year’s worth of incredibly high doses chemo given in just one week. At this point the chemo will have been so depleating to his system that he will need a bone marrow transplant. Throughout his entire treatment, they will be harvesting his stem cells in order to grow his own marrow for the transplant. He will then be in the hospital for a minimum of seven weeks.
     I knew that he would need chemo but I had no idea it was going to be like this. I had figured that he’d go in once every couple of weeks for an entire day of therapy.  I was definintely not prepared for a plan of action that was so intense.  It was impossible not to fall apart after hearing this sort of news.  I felt like I just couldn’t pull it together.  All I wanted to do was crawl under the covers (at home in my own bed, not on the fold out bed-chair thing next to the hospital bed) and not come out.  How was I going to deal with this sort of shock?  After much sobbing and an overwhelming sense of anger, I think I have finally come to terms with what needs to be done.  Jon and I have talked about it at length and we know that even though it will be incredibly hard, this is what needs to be done if we want to have a future for JJ. 

We have really realized at this point that we are very much going to need to lean on those who love and care for us.  These upcoming months are going to be trying at every turn of the road.  It is going to be impossible to do it without a strong support system.  Those weeks that JJ will have to be in the hospital are going to be a time when we are really going to need our people to rally around us. There are going to be times when we will have to go the hospital in the middle of the night because JJ has spiked a fever and/or gotten an infection and we will need someone to watch jaxson at the drop of a hat.  It is a totally feeling of being out of control, not knowing what is in store for us, and essentially begging everyone to stand by us and help us when we are unable to do it all ourselves.

Im finishing this update on Friday morning because I finally fell asleep while writing it last night.  I felt better this morning when I woke up, but after sending JJ off to get a spinal tap to drain excess fluid out of his head, and then re-reading what I wrote last night, I’m starting to feel myself unravel again.  I know that these feelings are not going to go away easily and I might as well embrace the fact that I’m probably going to be a basketcase for the next year.  All we can do is keep our eyes on the prize and hope that by christmas that JJ will be in remission.  Lets all keep our fingers crossed! Love you all…

A home run!!!

Let’s start with the good stuff…Jay’s surgery was a complete success!!!

Now to the story…I can only speak from 3:30 on…but the process began at 8:30am.

Everybody was hanging in the cafeteria…playing cards, doing crossword puzzles and reading magazines.  The table was filled with candy, a coffee cake, frappucinos, and snacks.  There were about 12 people just hangin out…waiting for an update.  The first came about 3pm…vitals looked good, everything was going as planned.

The second update came about 5:30…Jay was still doing well, and the surgeons believed they could get the entire tumor that day.  However, it would still be a while.  Little did we all know what “a while” meant.

The next came around 8pm…Jay was still doing well…more time was needed…

We got kicked out of the cafeteria around 8pm, and it was on to the Finding Nemo room again where we had waited with anticipation just 4 days ago, although it felt like a lifetime away.  They called around 9 to say that things were looking good, but it would be a long road ahead.  We were all happy that they were taking their time but waiting was excruciating! Every minute was like a minute squared…it seemed like days! We were all making jokes, trying so hard to pass the time, meanwhile we had memorized just about every inch of the waiting room…

Around 9:00 or so, they called to say that they were still doing the surgery and that it would be “a few hours.” Sheesh, we thought, this is taking FOREVER!!! We were sitting, talking…waiting…waiting…waiting…

It got to be around 11:45 and we still hadn’t heard anything.  We were all starting to get nervous but nobody would say anything.  Let’s put it this way—there was a lot of leg shaking going on. Every two hours we had gotten an update….. then, finally around midnight they called to say that the surgeons feel great about the surgery and that they would be another few  hours to finish things up.  We all cried and were literally jumping for joy with the fact that they had removed the tumor!!! Holly and Jon stayed and most of us left them to get ready for the long night ahead.

Jay finally got out of surgery and up to the recovery room around 2am…after 18 hours or so of surgery…adding up to about 31 hours or so of surgery in 5 days!!! The surgeons thought that Jay would need to keep his breathing tube in because he had swelling…but, to no surprise…HE DIDN’T NEED IT and was talking right after coming out of the anesthesia!!! I am telling you, his strength amazes us and he is so strong! Thanks to those who have  been so supportive to the Moisa family! We know that Jay’s road is not yet over, but our hope is that they can leave his brain alone now!!! All our love to you JJ!!! You are simply amazing!!!