Weeks 20 and 21

Having fun with Thomas stickers...think he took pointers from T on "silly sticker behaviors" . I can recall the first time T stuck stickers all over his body, including his penis! Pushing along that IV pole w/ ease. He is better at it than I, the only reason I take over is to prevent his toes from getting crushed!

Notice his left eye? Even as a baby his left lid would droop whenever he was tired. Belmonte determined that lid was actually housing more skin than his right. When it is at it's "heaviest" it never actually impedes his vision. It is just noticeable when he's tired and more often during these past few mos at random times of day. We will continue to monitor.

Choco gets spoiled with a gigantic Snickers ice cream bar. He ate half and passed the remainder onto me...I guess I HAD to eat it, right?

I love these next two pics

(seeing as I can hardly get Charito into any!)

One of the best things of this hospital stay was the several times daddy came to visit. G really missed a great deal that week. As you can tell he was so excited to spend time with him. And to get that solo mommy and daddy time. Spoiled brat!

Chowing on the already made, ready-to-eat gingerbread house!

And obviously cancer is NOT going to stop him from being a typical two-year old!

See below:

Cupcakes! Luv his old man seated pose.

Luvin' up on the puppy he received from Nurse Shell. He slept with it! He kept asking it if he wanted to see Bryley!

It REALLY was a pleasant stay that week. We had face time w almost ALL of G's fav nurses and child life specialists who worked their butts off to get us home in time for xmas. And they sent us home with unbelievable goodies for the boys for xmas. I was even able to vent, cry and laugh with theright person to fit each of my emotional needs. All the others were good, too, but that one symbolized the end to Interim Maintenance phase. It was a biggie. He amazed us, as always, thru that phase. As fearful as we were as a family for those weeks of on and off again hospital stays-it flew by. With no bumps in the road! Who could ask for a better Christmas gift, New year wish!? The following week at home (we made it home the day before Christmas eve) was full of family time, food and tons o hugs for all our boys. So much to be grateful for. It really was the perfect end to a toilsome year.

Thank you...

ALL OF YOU!

For all that you do and have done. We would not have survived the turmoil of the past 5 mos without you. The way friends, family and strangers continue to rise at our side overwhelms us. I know I use that word OVERWHELM often but truly is no other way to describe the rush of loving arms we have encountered more than ever in recent months.



I woke this morning forgetting it was even Christmas Eve today. Forgetting I promised Triston we would be shopping buddies today. While rescuing Caden from his pee pee soaked pjs, a hurried bath and yummy bottle at 7 am I felt nothing but quiet. Heard nothing but quiet. The house was frozen. Just he and I sitting in the living room taking the morning in. I felt as if I barely any sleep at all. When will I feel refreshed again? The kind of awake that comforts you for days with a sense of new beginning?



Frozen is what last evening was like. Grayson and I arrived home by 1 pm. By 3 pm I decided to surprise my parents and show up in Roselle. I had that giddy, excited, little girl feeling in my belly. But anytime I get a tad of that feeling (like when I get to see my hubby after days at the hospital or when he returns home from work) it is curbed with the what ifs of Grayson. I glance him over. Recall his last meal and drink. Temperature checks. Is it ok to take him out? Only a few hours? Everyone all well at the house? When was the last time he had his meds? Pack the rest of meds. The list goes on. On top of packing what Triston and Caden would need for a few hour outing. Exhausting just to think about or even attempt but that excitement of seeing my parents overrode that ugh feeling. I gathered what I needed and off we were.



Arrived there around 4:30pm. I cannot put into words the feeling of those hugs from my parents. The kinda hugs you suck in every breath, smell and warmth of. You hold onto it to remember it, that moment, bc you waited months to have it back. And then just like that...we fall into a routine that was never more necessary for me. EVER. The kids run, hug, jump, and play til they collapse. Adults gossip, eat and just chill. Everyone observes and comments how fast they are growing. And of course the infamous thought ---as he keeps up with the big boys---Cancer, huh? Where? You wouldnt even know it. That is HOW AMAZING my boy is. And as I fought back tears, enjoyed the laughs, the pizza the company--- I breathed it in. I purposely touched items and paused in areas in that home reminded of me of where I'd been. I smelled the smells that send tiny smiles through my bloodstream. I munched on sweets the way mom and I munch after dinner. I watched and memorized all the facial expressions I wanted to, needed to, in those moments. I missed them beyond words.

Don't get me wrong...the "CAUTION sign" on Grayson's existence never disappears. I did all of the above WHILE watching him like a hawk. I sure as hell did not want to return to that hospital bc of some stupid injury. Or bloody noses bc of low platelets or a surprise bruise or ...the list goes on. That cautious feeling is heightened when we are around others. Not just adults but other kids. Kids will be kids and G will be a 2 year old...and with that comes rambunctious behaviors and injuries. It's the typical parent worries amplified. And unfortunately, it puts a damper on socialization. But we do what we have to get thru the hard before we get to experience the easy-er. I dont know when it will be completely easy but I imagine it will get easier. And to think prior to July 31, it WAS.

And I will not lie...just because I can feel the happiness and gratitude in these next 24 hours especially, it doesnt mean I dont have episodes of anger and sadness. How could I not? And the question plays over and over in my head-How did Charito and I get here? This place in our lives? I don't understand. That question carries so much grief, anger,despair, pain and uncertainty for us. It creeps up at the worst times. It is evil. That question. It haunts me. So now you know...when I am not thinking positive I am plagued by that question alone. And ultimately followed by that question is the recall of diagnosis day. It is inevitable each and every time. Evil.

But with evil comes good. Like the good, no the GREAT, I have seen in people in recent months.

We are grateful. Grateful for those events we label moments. To have my parents to come home to. A wonderful support system everywhere I turn. Health-ier people in our lives. Happiness to be shared all around. It is what the season is for. To remember it like Triston says, " Jesus was born for me, mom. And God made everything I see." Jesus IS the reason for the season. And I decided today to follow the lead of my big 5 yr old and the innocence behind his version of the tale. It is the simplest. And I need simple. No frills involved when it comes to God's involvement on this eve. Simple understanding and acceptance. Sometimes it is easy to get there and other times not but I AM CHOOSING to get there today. Not sure how long it will last (especially since these kiddos are off their rockers today and it is really, really difficult to maintain sanity without exploding in frustration) but I AM TRYING today. And will continue to remind myself when I can all other day to come. I hope you do, too. Merry blessings to all of you this eve. All my love!

Week 20 Part 4

Yesterday (Wednesday) Charito got off of work by 2 pm and brought us Mcds at the hospital by 3pm. He had every intention of visiting a bit and then finishing up some Christmas shopping before returning home to Amy and the boys. But...Grayson missed him so much they kept playing and goofing off til 8pm. It was precious! I have great pics of those moments I will upload later.

While daddy was here "Shell" , another of G's fav nurses, was on duty and she wished we were home already! As happy as she was to see us she wanted to push out to get home! Luv her. So, she convinced a dr to do another metho draw before midnite (protocol is every 12 hours). The 10 am draw of the day was at .16 We were convinced that after 3pm at two doses throughout the day of Leucovorin that we would be good to go! It was worth a shot even if I didnt pull up in front of the house until midnite. We drew again at 5 pm and got the result shortly after 9 pm.

.17

It went up!!!

NOT going home obviously. The next draw would not be until 5 am Thursday. Oh well, we tried!!

G and I spent the rest of the nite flipping thru channels and waiting fo rhis hyper mood to take it down a notch. He was quite the goof!

He finally passed out at 10 pm. I was a bit restless. The nurse and I kept changing those diapers every 35 minutes (fluid rate was 90 ml/hr) just be sure he was reaching those parameters and NOTHING was gonna jinx things for that next draw. Ph stuck around 8.5. Silly to get excited about numbers but that is our life now. During this hospital stay we NEVER had to play the musical IV bag game. He did great! Other than a surprise diagnosis of RSV it was a very good stay. HE REALLY DID GREAT!

We were interrupted last night (early Thursday morn) at 4 am for a saline treatment. I was so tired, out cold, that I never noticed the therapist enter the room. It was not until I heard G whining that I looked up. A therapist not familiar to us doing her job. Annoying! Who wakes a kid to do that. It's not like he was a respiratory patient. And the RSV was managed. He did not go back to sleep until 7 am. He was tossing and turning. Poor guy. He slept until 9:30 when Dr. Kwon caming in asking if we wanted to go home. I groggily sat up and told him of course! Metho count .05 Woo Hoo! WE ARE GOING HOME! ALL BEFORE XMAS EVE! Good job G! Kwon even said he thought we would have gone home yesterday. The drop was on such a nice track and then it sat for half a day. Oh well.

We go back to clinic on Monday or Wednesday for counts. Today ends the Interim Maintenance phase. The following Monday, Jan 3 begins our next phase. A new phase for a new year. I'll take it!

To everyone who takes the time to read our blog:
Have a blessed holiday and new year. The fact that you do read and follow shows your concern and push toward the positive we need for G. I appreciate it so. Bless you all! Cheers to a healthy year for us all.

Week 20 part 3

Wednesday
Okay, well, Grayson napped for 4 hours yesterday. Me? My mind was racing and I only got in a 30 min one. There is so much to do at home. So much to worry about all around. I cannot shut my brain off. So frustrating. It was one of those night time sleeps in which my body was totally shut down from exhaustion but I could feel my mind going. I heard when nurses entered the room every 4 hours but had no energy to say a word to them or turn my body to acknowledge them. It was a rough one.

On the positive, Triston's excitement for Christmas is out of control. I thought last year was fun to watch unfold but this year is awesome. And what a year for him to be...he deserves it all. He has survived these past 5 mos amazingly. Very similar to Grayson's road map, a few bumps in the road emotionally and security-wise. My pride for that independent, smart, mature 5 yr old (still have a hard time saying that numeral!!!) is unwaivering.

His excitement level is pretty high today, too. Amy and Ayden were supposed to babysitt and sleepover yesterday but A came down w the stomach virus that is floating around. I told her to keep him home and I would come up w the at-the-time-nonexistent-plan B. We REALLY need to stop the cycle! And poor A wanted to be there so bad that he kept telling Neal and Amy that he would "play far away from Triston" and "G in the hospital so I don't have to get him sick, too". He tried so hard to convince them as "the pee is coming out my butt", his definition of diarrhea. But all is well today and they are heading to our place this am.

Triston has had a fun-filled week, actually. Monday he had a play date with his old school buddy Jackson (thank you, Alysa). Then a surprise visit from his Ninang Leslie Monday night and Tuesday night. She IS a big kid through and through and was able to help us in a jam with a bonus FUN play mate for T. You should have heard the squeal in his voice when I called him to say she was returning last night. It really is the fun he needs on vacation, in my absence, and the best kind of healthy distraction. I can only allow so much computer games, Wii and tv.

As for Grayson he keeps playing away and winning over each person that walks in this room (donning their isolation gear of course). This morning we had a visit from some local police officers dropping off toys. He received some Hotwheels and a Mr Potato Head. He is loving cars lately. And the opening of these packages have become my bribe for eating bites of anything and drinking!

As for updates:
His Tuesday 3 pm metho draw was 1.32
Tuesday 10 pm draw was .52 ( found that out at 8 am today)
Dr Kwon visited at 9:30 am today and was pleased with progress. I asked for a CBC seeing as Kwon talked so confidently of us being home today even though neither of us had the latest metho count. Kudos to his optimism!
Received CBC results by 10 am and Hgb 8.8 Platelets 327 WBC 1.6 All good counts
Still do not have his ANC (whether he is neutropenic)

Will be interesting to see that ANC count bc his WBC is good and yet he tested positive for RSV. Remember I said he came in Sunday with cough that started Friday night? By Sunday afternoon I treated it like an asthma attack and he was cough free Monday and Tuesday. He woke with a bit of cough this am but that followed a crying fit. I stepped out to get coffee and when I returned the respiratory therapist (one I am unfamiliar with) had woken him to treat him. He became upset and started crying creating mucous and cough and runny nose. He has has had that runny nose since. That annoyed me, I will say that. Any other person would come back. Kids need their rest! It has set a mood for him and now he is fighting to stay awake even though he is yawning every few minutes for the past hour. I will be reporting that incident. That RPC (respiratory panel/viral nose swab looking for all viruses) was taken early Sunday and we finally got the results this morning. He doesnt seem to have all the obvious symptoms of RSV but he must have been living in him to test positive. His cough was not unbearable, he was not wheezing or having any difficulties breathing. In fact, anyone who has listened to him with a stethoscope since our arrival has commented how clear he sounds. So, who knows. It is what it is. The only thing it made me think of was Caden. He has had a cough/cold for week now. We have been staying on top of it w saline nebrulizer treatments and nose suctioning to be sure that mucous never reaches his lungs. He has not had any wheezing according to Charito. Fellow mommy, Auntie Amy, will give me a mommy opinion today when she's there. But when we saw Belmonte last Thursday Caden was clear as well. RSV is much more dangerous in infants and then w any child if they are having any difficulities breathing, eating, drinking or just functioning. Those characteristics result in hospital stays. Otherwise, it is just treated at home as a respiratory infection that needs to be monitored and clear up on its own. I made sure of those statements with the nurse this morning bc I cannot help but worry about Caden from afar.

Okay, ANC 900. Not bad.

Daddy getting out of work at 3 today so he is going to visit us!


Now we just wait for the results from today's 10 am metho draw.

We just gave G a bath and he is finally down for nap (1 pm). He was so overtired he whined during the whole bath. This whining was an extension of the whining he did when another set of police officers came by with toys and he wanted two cars instead of one. He was too tired to even listen to my reasoning of other kids turns. He just melted. Poor guy.

I hope it is comforting for all you to know how much this hospital works to make sure our sick kids are cared for inside and out, in every developmental domain. Making sure they don't miss out on some of the things they are potentially going to bc of logistics and conditions. They work their butts off to make any special day happen for these kids. It continues to amaze me each week. And I am not just talking about present drop offs. This includes the parking passes, gas cards, meal tickets, volunteer play dates, art activities, story times, hand-made blankets and pillow cases, his own personal ID badge bc he steals the official ones off his visitors, the press related events they have invited him to and so much more. I wish I could describe the amount of care each person shares with him. He is so popular and loved here. That makes me feel safer than ever, knowing I have faces I can count on. They even gave us a Toys R Us gift card and sweet note thanking us for our appearances in media related events. PLEASE! I am totally giving it back. It is OUR honor and pleasure to help them anyway we can. It is US telling OUR story bc knowledge is half the battle. There is nothing to hide here. It is G doing his job to fight and me as his mommy fighting right alongside him. Many of the events we participated in were activities we were taking of advantage of anyway. Our presence was the icing on the cake for them, but the opportunities for play, fun, new experiences and "normal" were thanks to them. It is I who is thankful to them!

Feelings
I kind of feel like I am in limbo this week. I forget Christmas is coming and then remember when a nurse walks in w decor scrubs. Or when I hear Triston's voice. Or turn on the tv with all the santas everywhere. G is obsessed with santas and anything snow related is a snowman eventually. He cracks me up.

I am trying to remember where I hid presents. If I am even done shopping? There is so much to sort through. And then I tried to surprise Charito with a sentimental gift and he discovered it online when sorting through our bills. I can't hide any shopping from him!

And then there's the overwhelming support and care from those around us. Did I mention the bins of Christmas presents that arrived at our home from Triston's shool?! No to mention the cards and gift certificates from the entire school and parish staff. Yes, at some point they organized a letter between the prek staff and prek rooms and we received wrapped gifts "from Santa" for all three of our boys. My sneeky friend Najette passed on my boys' wish list and used it for their own Santa workshop efforts. Again, OVERWHELMING!When I spoke to Triston's teachers (and the spy we call Najette) they explained they did not want us to worry about ANYTHING for the holiday. Stress-free. It's a simple reminder that people with hearts bursting to share love and peace are what we are surrounded by during this difficult time. People who just want to ease the pain for our whole family. We are blessed in so many ways.

So I know it is supposed to be stress-free but I can't help but WANT to be a part of our usual Christmas routine. Make it perfect. And I KNOW it has nothing to do with all the material items. IT IS about FAMILY together but I want it to be perfect for my boys. I want us all together. Smiles everywhere. Love from top to bottom. A positive Christmas to remember.

Just alot to think about that's all.

Update:
10 am draw results---- .16
Still not below .1 but getting there.
Soooooo, one of our fav nurses came in specifically to work w G tonight and she slyly suggested another draw occur before 10 pm tonight just in case there was the slightest chance the metho count would be low enough to go home. I wouldnt even mind going home at midnite tonite! Just the thought of the possibility is reassuring. We shall see. He received a dose of Leucovorin at 4:30 pm and then a metho draw at 5:15. Keep your fingers crossed. It would just be a nice surprise. I was mentally preparing myself for chance of not being home at all for Christmas. I was even realistic of hte chance we would be home Thursday or Friday. But tonight would be great!!!
Keep you posted! And of course, I have goofy pics of the clown to post of this hospital stay. Coming soon!

Week 20-part 2

Monday
We were busy over here! We settled into our green cocktail and played, sang, slept our day away. A few Marines visited with toys for Christmas. G was sleeping but Alana knows our boy and handed a Thomas video projector gift set off to me. I made sure to make my way to the hallway to thank those daring men for all they do for our country. They deserved hugs!

He ate a bit throughout the day. Bites of pears, breading off of fish sticks and a bribery of Pediasure. By 10 pm the cocktail was done and his first methotrexate draw was taken. I received those results at 4 am today (Tuesday) it was at 90.35. As long as it is under 150 we are sailing well.

We are back to fighting that pee pee monster again, though. Anytime he is sleeping he does not pee. There were a few times I had to actually wake him and make him stand up or walk a bit in our room to make him pee (1 am and 4 am). They need their parameters to chart and we need that metho out of him. It made for a crabby time for me. But he has REALLY been napping and he makes up for it then. Surprisingly, he was able to go right back to sleep after any interruptions.

Tuesday
We woke at 8:30 am. He has been so chill and in such a good mood (no ants in his pants) that I have been able to take a shower in those first 10 min of his wake while he watches tv. Then I order our breakfast and we cuddle. He ate a bit of french toast sticks and pears.

By 9 am we had visitors from the local fire department. They came in and took pics with G and gave him a B.O.B stuffed animal and a set of hotwheels (more to add to our car wash later).
I hugged them as well to thank them for all they do. Heroes all around us if we just take the time to pause and look around. They are standing right next to us at times.

Then at 10 am we had a special visit from an author. His name was Howard and he just wrote a Christmas book that is about to be published. He was making his rounds to read it to children. It is a book about a Santa without a beard. Very cute story! He had his wife with him and they are the most adorable couple. Bragging about their grand and great grandchildren. He was definitely a "Gramps" while he read the book with such enthusiasm.

After they left we read a few books brought to us by volunteers and munched on some Gingerbread house. We have not received the results of the viral swab or the the most recent methotrexate draw. But, now it is def time for his nap. Maybe me, too?

Dear Santa...

Grayson loves the Chia Pet commercials for Scooby Doo and Spongebob Chias. And he just saw the Chia tree with Star topper and yelled for me to "SEEEEEE THE STAR MOMMMMYYYY! The light turn on and off!"

Love,
Grayson's mommy

Week 20 part 1

We made it! The final round of the Interim Maintenance Phase. We were given permission to admit early this morning in the hopes that one day ahead of our usual Monday schedule would allow us to get home by Christmas. All week I prayed Grayson would not become febrile. And if he had to, let it happen after his bday party Saturday. Considering we all suffered from a stomach virus of some sort (even Caden who is still recovering) Grayson came out of the past 10 days of exposure practically unaffected. He had two bouts of vomit Wednesday night immediately following dairy consumption. As soon as I eliminated it from his diet he was all good. He has been on red gatorade ever since (T and G never tolerated Pedialyte and surprisingly enough Caden has been downing the unflavored kind like his new cocktail of choice. He has been on it bc he was coughing so hard he was throwing up his entire bottles when he was riding that fever of 102 on Monday and Tuesday). I only allowed him to have milk this am and he wanted MILK so bad that he even drank chocolate milk, a first! And that was only bc I knew we had the hospital to depend on if he did catch the virus big time.

Charito decided to just drop me G and I off at the hospital. We made a family thing of it. We arrived by 9:30 this morning and by 11 ish he was hooked up to fluids. Then Charito and Triston took a walk up to the cafe for yummies. Even though we were all crabby and tired from the illnesses and party preparation and recovery (it really took its toll on G afterwards even tho you would never have guessed so with the way he sucked up every bit of freedom yesterday) it was nice to have everyone together. It wasnt just G and I loading up and setting up shop in our hospital room like usual. We enjoyed a nice lunch, mini naps and I got to soak up all the cuddles I could with Caden before I left him.

Daddy and the rest of my boys took off around 2 pm. After that Grayson slept some more and I caught up on emails. It has been really hard to keep my eyes open. I miss everyone already. So much.

We started G's green cocktail at 9 pm. He is getting pretty tired after playing trains and playdoh. But boy did it take us a couple hours to get to that cocktail point, playing the Urine Ph balance game again. Once again, he would not pee while sleeping so that put a pause on things to the point I just started waking him from his mini naps and made him walk around the room in order to pee. We are also on isolation due to this nasty cough he has. Best for his protection and the fact that RSV and norovirus and oh, um a million other viruses are going around.

I hope its a fast week. I cant help but worry and think about how much needs to get done before Christmas Eve. Will we be home in time? I know it is just a day and we can have our day any other time but it is still hard to picture something other than tradition. And some might say, well it is then time for a new tradition. But you are also talking to someone who doesnt like change, much less events I have no control over anymore.

There is so much emotion wrapped up into this week. I feel like the boys' bday party was just the intro of a feelings flood to come. From this tiny room I have to monitor Caden's cold and horrendous cough from afar. Guess whether he should consume a pedialyte bottle or formula bottle via the babysitters take on his behavior. I have to keep tabs on Triston and his emotions leading up to the most exciting holiday for a 5 yr old all the while hoping he understands if I am not there xmas morn. I have to keep myself together while my husband takes part in all the wrapping and little parent things we do in xmas preparation for our children. So much I am missing but so much I need to be here for to be sure my boy gets better.

G hasn't let us down and I can't let him down. He IS the courage I need through this holiday. Psst...the arrival of my parents on Thursday is big boost for me, too! I NEED my mommy and daddy just as anyone else does.