Just wanna squeeze...

Shot this in the middle of the night last evening...a good night's rest w no interruptions. Don't you just want to cuddle up with him?! I sure did...all night.

Finally. Sleeping since 11 pm. He would not SHUT UP! I was both irritated and entertained at the same time. Back to his chatty self. He was wired and I was tired. Not best combo for feeling all shut in during isolation. He barely stirred. It was like a sleepy night at home. He is acting like himself and still fever free. Numbers are abit up from yesterday (finally received yesterday's labs late last night!!) but not good enough, still low. And while his hemoglobin was nice and steady through Sunday and Monday while fighting the height of this it went down yesterday below 8. It was a 7.5 as of mid-day Tuesday. They drew for a CBC at 6 am this morning and I would not be surprised if it dropped below 7. And even if it didn't I know Goodell will not be content sending us home without a transfusion. I'd rather it be that way anyway, in fact I would insist before I was discharged. We have several days before returning on Monday for numbers to plummet while G gets the rest of this infection out of his system. And yes, I was FINALLY told that the first blood culture was negative (no bacteria growing in his blood/bone marrow) and that the second is most likely negative as well. This is looking like a viral infection. Still to determine what type and mode of antibiotics we will leave here with and for long they will be taken. Til then...

Grateful

Please understand that I am grateful for so many moments even though I just vented in a negative manner. Although this hospital stay is inconvenient I know it is the only way to make him better. I have accepted that I cannot make Grayson better at home. We dont have "the tools". His tools are special now. One of a kind, like him. Tools in the hands of others. I get that now. And I am grateful this is our first hospital stay. I know now that the first few months of chemo could have been worst. We were lucky. He was lucky. And I truly believe that our mostly bump free first 3 mos mean something. That it is going to be ok. He is going to ok. He is telling us so much. I know there are families struggling with so many more bumps in their cancer road. Drastic and serious bumps.I am so thankful. I am realistic to think that things could get brutal for us, believe me. I am just allowing myself a bit of ying and yang now and then. It is only fair to myself, G and my family. It's how I get by. I think it aids G in the fight as well.

You should see how weekly clinic is no longer a frustrating place for G. It is routine now. He tells them what to do! He is thrilled to hear he is going to see Jenny. The only mornings he is upset is when he cant eat but once he picks out what he is going to dive into when given the ok he holds onto that item and walks into clinic with it. His transitional object and reward at the end of a "long day".

I have admitted to Jenny that clinic is actually a happy place for me, too. It is quiet time for me and the place that my lil boy is getting fixed. It is a positive place for me to reflect. I dont dread Mondays anymore.

It is too bad that this hospital stay has delayed our track. We were due to start Interim Maintenance yesterday and that isnt even going to happen if his numbers arent in tune next Monday. It would be quite the surprise if so-they would have to dramatically jump skyscrapers in order to do so! Not gonna happen with this infection brewing to its near end.

But I just had to get on one last time tonite to let you all know that I know its going to get ugly and this stay could have been for something ugly and serious and it isnt. Its just scary at any point these days. The unexpected haunts us. I have no control over much of G's rollercoaster and I struggle with that everyday. I have accepted that I am not the one that can make it all go away, only the one who can make it better along the way. Its my mommy duty and Ill take that duty anytime, anyday, forever and ever.

A Downslide...

of emotions, energy and good times. Our first (always unexpected and never planned) hospitalization since diagnosis is now in effect. Just when Charito and I were finally feeling better. Just when I had my energy back. Just when I was rid of my pneumonia induced blahs. Just when the depressive state October grasped around me was starting to disappear. Just when I had a couple of great times to brag about that made me feel awake again. Like these:

Over a week ago-Triston's first classmate bday party-Halloween theme. He was sooooo excited!It was my first time out in weeks other than Target or Jewel. The whole time T kept telling me "Thanks for skating with me, Mom. This is fantastic!" He knew this was something we always wanted to do and each winter we remembered to I was prego. It was soooo much fun. It was hard on my breathing and I used my inhaler often but so worth it! And I might add-T is a really good skater, the grammar school and high school figure skater mama in me was so proud! Dare I consider hockey for him?!

10/29-Triston's Halloween parade and party at school. Grayson was invited and he was feeling great and numbers were awesome that week so I took him along. G was so excited and T thrilled to have us there. He just shined when he saw us. My two lil pirates!

10/30-I finally got out for some mommy time. I have not had my haircut or colored since before diagnosis (end of June!). My bday present from my parents was a do and pedicure but all I had time for was a do. I told my Aunt (AC) to chop it. I do this all the time. I grow it out to below my ears saying Im going long and then I go drastic and frustrated and chop it all over again. This time we went a bit shorter. I needed it. I told her I was feeling so heavy (I know that had more to do with my stress and emotions and such but anything to make me feel lighter after such a "heavy" month of October I was all for it!). So wallah. This pic was taken by myself in the hospital. I have not washed my hair or done it 3 days and had no sleep the night before so bear with me.

Unfortunately that new "high" did not last. The morning I had my hair done(Saturday) and breathed some fresh air we also went shopping w Mamac for some new season clothes for T and then since the kids held out we went to dinner, just us 5. It was so nice. G fell asleep for most of dinner and I figured it was bc he did not nap. As soon as we got home he slept some more. All kiddos down by 7 pm. By 10:30 g woke asking to cuddle and as soon as I grabbed him to nuzzle he was warm. I took his temp and it was 102 (dangerously high for G). I called the drs and Goodell said to give him Tylenol but if it didnt go down or return we needed to head to the ER. We gave him the dose at 11pm, at 5 am (Sunday morning) he was clear and by 9 am it was back. 102. By 1pm we were at the ER.

I cannot begin to express or describe the look on Triston's face when I told we had to take G to the hospital (we are clear about using the terms hospital and doctor. We had to establish the difference to him early on. To ease all of this). He truly fought back the tears. My heart sank. Even tho he is so independent and mature, those specks of him I assured him that he would still have his day as planned. Uncle Neal, Auntie Amy, Ayden and Uncle Mike were coming over for pizza and treating. That helped but I knew what he ws thinking. He was fearful I would be gone a long time like last time. That has without a doubt left a scar on him.

Mamac sat with the kids until the Harper clan arrived around 1. When I told T they were bringing a pumpkin to carve he said, "I think it should have a sad face for Grayson". I told him it was very sweet of him to remember his brother and that he is an amazing big brother, the best in the whole world.

It was hard for me know I was going to miss Caden's first Halloween. Hard to know that I wouldnt see Triston's face light up with each trot up a stranger's front steps. But I knew he would have a blast either way and his cousin Ayden is such a great distraction. And as a friend reminded me 'He was with people who love him' (thx Becky!). I called him later that night and he said he had so much fun. I was so glad.

Later in the evening around 10 pm I called to talk to my sweetie. He left the hospital round 8pm. Mamac was staying the night and both boys were in bed. But as we were talking T was waking from a dream and Charito went to check on him. I could hear him wake and crying for me. It was so hard to hear. I wanted to hang up to no longer hear it but wanted to know he was ok. He climbed into bed with daddy and fell asleep again. You can imagine what kind of tears I had as I put myself to bed that night.

Before we rushed out of the house Sunday I had everything ready for T for school the next morning. Charito had to go to work and luckily so far each nite Mamac and Titamel are staying overnite to help out. G ran a fever of 102 all of Sunday. In fact the Tylenol wouldnt bring it down and they had to give him Motrin which they dont like to do w children receiving chemo bc it brings down their platelets. The fever remained until Monday afternoon (so far). The chest xray was clear. No pneumonia, no fluids in lungs, no inflammation (good news-meaning the respiratory infection we dealt w weeks ago was all cleared up thanks to a few days of steroids n his asthma meds). Goodell visited us Sunday nite and said we were looking at a possibility of a few things. A viral infection. A bacteria in his blood. A bacteria in his bone marrow. Or a false alarm fever caused by the chemo. He noted he was not surprised we were here and surprised we werent here earlier during our stages of chemo. We were due for one of these at some point. So we just had to tame the fever, run blood labs (CBCs), blood cultures and monitor anything and everything else.

The easy way to explain to everyone out there is that even if this is a simple virus in which any of us would give our kids Tylenol or Motrin at home and push the fluids and wait out, we cant with G. Things could go wrong very quickly for him. Remember -his blood and immunity fighting characteristics of his blood dont do their job when need be. For example, the reason we were out and about Friday and Saturday previous to this hospital stay was bc his numbers were great. Neutrophils and White blood cells in 2 thousands. He was not AS vulnerable as usual to airborne and surface germs of this and that. He was not neutropenic. Well as of Sunday with our first CBC during ER time his white blood cells dropped to 1,200 and his neutrophils to 100! That means that only 100 of the 1,200 cells were actually trying to fight this what we were so far calling an infection. Crazy! Neutrophils of that nature are automatic hospitalization. A fever is, too.

On Monday his numbers didnt change much at all. Not good. Fever til 1:30pm. But later Monday he was eating and drinking more and so playful. By night time he was his silly self and wanted to play on the floor. He was ol chatty Grayson. Goodell was pleased to hang out with him and see all that happy stuff. Happy to watch Lady and the Tramp with him. Happy to give me some perspective and hope-he jumped online and showed me a wedding pic of a handsome man and beautiful bride. As they were heading down the aisle there was Goodell giving the groom a hi-five. I said aww and he filled that aww with the news that he treated that handsome groom for ALL at the age of 3. He then showed me a pic of himself in the middle of the crowded pews with his back turned to the photographer. He admitted he was crying and blowing his nose at that moment. It got me. It was what I needed. Not that I was beside myself w this hospital stay we are going thru right now (I have accepted that it is a bump in the road and EXTREMELY grateful this is our first stay since diagnosis week that first week in Aug. In the big pic the past few months have been smooth. On edge but ended up smooth considering we dont know what to expect each and every mornind we wake), but it is a wonderful and personal thing for him to share w me. I mentioned how ironic it was we were glancing wedding pics and imagining stories bec I had jsut recently posted a blog about G finding the one true love who will accept him for who he is, ALL and all. He then told me, and I'll never forget it-"You will get there. You will have this day" , as he pointed to the computer screen. I thanked him for the chin up conversation and off he went.

He remains fever free up until now 1:45pm on Tuesday. We slept horribly last nite. Frustrating seeing as it was the perfect nite for him to rest up and kick this thing. We are still awaiting test results which is why we are still here. Still waiting for the blood culture that was taken at 2 pm yesterday. The first one from Sunday was negative but when his fever returned yesterday they had to take another one along w blood draw for liver function. Still waiting for the CBC results which were taken at 5 am this morning. We were interrupted at 12 am for a breathing treatment. 1 am for vitals. 4 am for vitals. 5 am for CBC . 7 am from a resident dr who cared less I was sleeping and then woke G to listen to his chest. G finally fell asleep for a nap at 1 pm. He would not give in. Too happy to play and eat his ketchup dipped anything, mayo slathered sandwich and read his books that were generously given to him by a Reading Nook fund.

So I sit here and blog and vent. My guess is even tho I just requested a check on lab results minutes ago they will say we are here til tomorrow. I cant imagine his neutrophils going up that much. This is all taking into account that we had no chemo yesterday to help balance the "weak parts" of his blood. He has just been pumped with antibiotics since we arrived and keeping up with his usual oral meds and asthma meds.

I cannot tell you often Charito and I have discussed how different this would all be if we did not have the people we do around us (and also wishing my parents were here to ease it all on my emotional end). How different it would be if Amy never entered our lives and Ayden didn't surprise us all w his arrival. He is the best play buddy and distraction for T during good and bad times. They are like brothers. Having Amy around who even w her own pregnancy and family to care for understands me. Knows how insanely organized I am and happily set up Triston's uniforms, school snacks and school lunches and labeled breakfasts for me through the week just in case. Mamac and her retired teacher lifestyle allowing us to call on her whenever. TitaMel who is always happy to help no matter what. Papac driving here and there or bringing Mcds at a moments notice. My brothers. Neal juggling a new job and family and still coming over to our house to make it a fun Halloween for T and dress up C. Mike for being the silly uncle and visiting when he can. Our friends who have organized Care Calendars for meals. Najette offering to take T to school this week. T's classroom assistant and our friend Ms A offering her assistance for anything. Our fun times during T-ball that led to several of those kids being in Ts current class and allowing for parent relationships for me-one dad even driving T home from school this week and any other time I am stuck at a chemo session. I just text him and he's there. Alysa offering to take pics of my boys bc I struggle to keep up (poor Caden!) My school staff that writes us beautiful messages via snail mail or FB or drop off a meal. Charito's boss being so understanding and allowing C to adjust his schedule. The meaningful phone calls and texts from friends willing to help at anytime-shop for this, pick up and drive Charito here or there, fix this at the house,etc. The clinic and hospital staff-we have not met one person (from dr to housekeeping) that has not been so kind and helpful. The numerous free meal cards for upstairs dining, free parking passes, books and toys and stickers and treats for G. The endless amount of family support the hospital provides. I never doubt that this is the place we should be. Anytime I see our oncologists I am relieved. They are so good to us. And you have heard me mention Jenny-G's number one gal! It is overwhelming and wondrous all at the same time. Thank you everyone. You all make this easier to handle. I truly mean that. I swear when this is all over we are having the biggest blowout party ever! No one will accept any gifts or money or other ways to thank you right now so the least we can do is party it up all together, every person that helped us get thru it!

So enjoy the pics below bc when we was feeling up to par since yesterday he was my funny playful two yr old. We are getting some quality time together. Gotta luv him!

Nebuelizer treatment with a dinosaur mask (how amazing tech gets these days when it comes to pediatrics!). He hates it. We dont administer his albuterol (asthma med) this way at home. He uses an inhaler w a spacer to puff in and out.

Mayonnaise sandwich. This is the only thing he ate all day Monday. Tuesday he moved onto Ketchup w everything. Whatever!

Monday nite dinner. He was finally breaking fever so I didnt care how he was playing with is food. He's two afterall. He did declare his "mess" and offered to "pean up" (clean up) all on his own.

This is the Distraction Center. Since we are in isolation (anyone who enters must don a mask and gown) they wheeled this baby in for us. How cool!

Playing farm

Tuesday morning breakfast. Pancakes, fruit loops and Saltines dipped in ketchup. The dietician stopped by and was fine w what he is consuming so I am not worried. It's a matter of getting anything in him when he's not well and everything in him when he is.

okay update...4 pm

(this is how long its taken me to write this ONE post-all day)

He is still fever free-yay!

Still on antibiotics.

No blood culture results yet or viral indicator confirmation yet. So still dont know what exactly is the prob.

CBC showed low blood numbers (did not change much again, meaning he is still trying to fight something and we dont have chemo to help out this week. We do not deliver chemo when his numbers at are certain levels due to further damage and complications). So other than antibiotics and the hopes that his blood works itself out we wait. No matter when we leave we will go in next Monday to do blood check.

He is truly acting like he is all better. If we were at home without cancer it would have been a virus that was all cleared up and we would be going about our "old" usual. Instead we have a little guy whose blood is all out of whack and needs to remain here to make sure it rides its course the healthy for cancer way.

Nurse Jenny stopped by to see G. So sweet! We chatted for an hour and I felt great afterward. G slept thru it all, unfortunately.

G just had a nice delivery of books, stickers, a cute blanket and handmade pillow cases to take home.

He still wants mayo sandwiches for meals! Drinking plenty of milk. Took a good nap.

We were told by Kwon a bit ago that if no fever there is a good chance we go home tomorrow with antibiotics to be delivered thru his IV port.

And now E from Child Life is here to play w him for a bit. They are playing farm. She is another familiar face from chemo Mondays. He likes her and her hubby happens to be Filipino so we have something in common!

It's been an overall good day. Now to check in on T n C at home. Keep you all posted with any news later. Ill catch up on October at some point and provide you w a glorious gallery of pics of my little grain of rice, Caden, soon!

Port

Cute little story...

Since September (when Grayson's port healed well enuf to the point he was able to have it touched without pain) he has named it. It started out one night in Sept. when he was lying in our bed playing with his shirt. His hands were rubbing his belly and chest and all of a sudden he stopped at his port and froze. He looked at me and asked, "Mommy, this?" I said, "It's your port". "Port?" he wondered. I told him "It's to fix your blood. Make it all better". His hands kept wandering around his chest and he found the top of his catheter near his collar bone. As soon as I saw him stop there and rub it I began to struggle with what to call that. He can feel a bump there. I settled on "your dot".

So, weeks following whenever he is just chilling he will randomly pat his port and tell me with pride "Mommy, my port/my dot". He really sees it as a part of him. Another body part. Kinda like he knows its a good thing for it to be there. It is so cute to hear him say 'port'. That's how I have always seen it. The tool that is saving him. I admire it and him. It truly is an amazing medical tool for such a grand job to be accomplished.

Well, two weeks ago we were lying in bed together getting ready for a nap. G was talking on his toy cell phone while lying down and it slid off his ear. It landed on his chest onto his port. I hear him say the following:

"Uh oh! Sorry, Port. You otay (okay)? Otay Port. You Otay! Mommy, Port otay!" as he patted it like he was comforting it.

I told nurse Jenny the story at our next treatment and she laughed. It is too adorable and grown up of him how he has taken ownership of his port. They arent kidding when they say how resilient kids are!

Then this past Monday I was prepping G before taking T to school. Before every chemo treatment I have to place magic cream (numbing cream) on his port and then (if necessary)additionally (depending on the procedures of the day) on his leg/thigh for a PEG shot or on his spine for a spinal administration of chemo drugs or tap of spinal fluid. And because bruises and scars or scabs take so long to heal bc he is slow to clot I can always find the right lumbar area on his spine to apply the magic cream. It needs to be on him for at least 30 min, the longer the better tho. I rub the cream on the area and then apply a square piece of Glad Press n Seal over the spot. That is great stuff and doesnt hurt to remove. Well, that Monday Grayson only needed it on his port. I finished that up and put his shirt back on. He doesnt cry over this kind of stuff anymore. He actually wants to help. As I was about to put away the Press and Seal he started screaming and crying. I asked what was wrong and he told me "leg, leg!" He insisted he needed magic cream and "paper" on his leg. I tried to tell him he didnt need it today but he would not calm down. He changed his story to his back. He lied on his stomach and screamed for me to take his pants off in order to put cream on his back. I tried to tell him that wasnt happening that day either. No use! He would not calm down. Finally I gave him a piece of Press and Seal and let him figure it out. I hid the magic cream and he had no idea it was an element missing since he had the "paper"to distract him. Wanna know what he did w that "paper"? He placed it on his leg with such precision. When he was done and patted it down, looked at me and said, "There. Better. Jenny better". He remembered it is Nurse Jenny that takes it off and preps all areas. He really does adore her!

Here is my guy taking ownership once again. Its' this fine line between being proud of him for recognizing what needs to be done for him, recognizing routine and being sad for him for doing things/knowing things that no 2 yr old should have to. And I'll have you know that he couldn't wait to show Jenny his leg once we got to clinic. She smiled so proudly. I knew in that smile she understood my struggle of recognition in his little chore he took on that morning. And something tells me there will be more of his take charge attitude to come! Just like when we are admitted into the hospital for transfusions or see Belmonte or when Jenny accesses his port each week-he tells them what order to do things in. He tells them- "Check ears (take temp)...time squeezes leg now (blood pressure cuff)...Buzz light (heart monitor on his toe that lights up red)...time for numbers (check his weight)...I drink it (take his oral meds)...I push (push the non-toxic syringes for blood work or flushing of port)...I hold red, purple (he knows what order to insert the tubes to collect the blood from his port and Jenny actually lets him bc he counts and waits long enuf for them to fill)...and so much more. He is a mini doctor. He loves to help and wants to be in control when possible. I dont blame him. It gives him comfort and I applaude him for that. I'll say it again-------he is truly amazing!

Leukemia and Lymphoma Walk 2010 -September 26

As you may recall from my pre-LLS walk post I was a bit of a crumbled spirit. I was not looking forward to the emotions that I would possibly encounter on the walk. I woke that morning ready and willing to attend a charity theatre event w Triston and just couldnt find the umph to do it. I had no motivation. I didnt want to get out of bed. I wanted to circle all the kids and hubby around me and hold them tight all day long. I wanted to forget we had Leukemia in our lives. I wanted to forget alot of things. So, the rest of the day leading up to our departure I was pretty quiet and blah. I only showed excitement for the boys each time Triston asked what we were going to do that day and when he was going to see cousin Ayden. I told them it was a Leukemia parade with balloons. Balloons is all Grayson needed to hear!

We loaded up the car with Mamac and off we went. We all wore the color orange bc that is the color G was wearing the day of diagnosis and it just also happens to be the color representing blood cancers.

I had a pit in my stomach as we approached Gallery Park. The only thing that came to my mind until we found parking and I could get my mind on something else was this:

-the last time I was here was the Thursday ( 4 days) before Caden was born. I had a feeling that week the days of me and 2 boys were running low and I planned a picnic at that park. We packed lunches and played all day long. It was the first time I even noticed there was a sandbox there ( I hate sandboxes! They are giant kitty litter boxes as far as I'm concerned). I even let the boys play in the sand. Yuk! And then they ran themselves silly in the sprinkler pads (washed off the kitty n other critter poop). Huge laughter and smiles all around. They played perfectly together and so many moments I held back tears knowing that I was to deliver another extraordinary boy into this world in a matter of days. Another wonder to join these crazy two. Then we ended the day with a visit from the ice cream truck-Triston's fav!

-I remember taking amazing pics by Alysa weeks before diagnosis here. We ventured all around for the perfect, fun and loveable shots.

All this before cancer. I hate that there is this HUGE TEAR breaking up a before and after version and chapter in our lives.

We parked in our usual spot as we have for the walk for our dear friend R in the past. We headed to the site in usual mode of get here and there to register and submit this and that. But then the volunteers asked me at the table if we were walking for anyone. For the first time I wasn't saying R's name. I responded with my story. They made their apologies and blessings and directed me to the Patient Care tent to pickup a tshirt for G. The woman there was a support social worker and introduced her card and services to Charito and I. Here we were getting tutored like in the hospital while Triston and Grayson played at the kiddie section. Their little minds having no idea the perspective this walk had on us. I left that table with a "Survivor" tshirt for a Youth 7-8, the smallest size they had. My heart cried a little thinking Grayson was the smallest and youngest one to be given a "Survivor" tshirt that day. I debated not even putting it on him. Embarrassment? Shame? Guilt? Denial? I dont know. But then I thought-NO, NO! He is here, alive, smiling and ready to party. He is our survivor. A survivor of a mere 8 weeks of cancer but a survivor nonetheless. So we tied and wrapped and knotted that tshirt on our lil man's body. He really had this look on his face like he was pretty cool, it must be cool if it took 3 people to tie it on me!

Until it became dark the kids just played and we gathered all our friends around. We laughed, caught up, and just plain WERE.

We struggled to gather and untangle over 13+ lit up balloons before the walk began. That was quite the sight.

Right before the walk every year they ask for a moment of silence for those stricken with cancer that could not be with us that day. That was hard for me. I NEVER want that moment of silence to be for my boy. I prayed for that thought right then and there. I prayed that we attend endless LLS walks as proof we made it, GRAYSON made it. I want him to be 30 years old with his one kids walking alongside me every year. I prayed hard. Funny how you can be surrounded by hundreds of people and yet pull yourself into yourself so hard that you feel like the only one standing in that field...ready to be heard, ready to be helped.

The announcers switched to some upbeat music and encouraging words and off we were! Trailing behind hundreds of people. I almost immediately got behind from my group while caring for Caden in the Moby and staying beside MamaC as she pushed the stroller with Grayson inside. Within minutes G wanted nothing to do with the stroller. It was obvious he saw what everyone else was doing and wanted to be a part of it. I let him out and he paced his way through the crowd. He just trudged along w a big fat smile on his face. He kept pointing to the balloons, naming all his friends and family around him and imitating the crowd. You would think he would get tired on this 2 mile hike but he didnt waiver. The only times he asked to be picked up were when he heard a train in the distance and thought that maybe height would allow him to see it. Mamac kept asking him if he wanted to be carried (I know she just wanted to cuddle with him, I understood that) and he declined often. I knew right then and there that even though he did not understand the grand purpose, HE knew something. Deep down HE had something to prove. HE was showing us something, telling us something. He was, well...being the Grayson I know. Persistent, stubborn and ever so happy.

Finally it hit me along the walk, we had been walking a while and it was surprisingly quiet. By now it was just Mamac, myself, Caden, Grayson and the Keller family. I looked behind us and realized we were the only ones on the path. I dont even know for how long we had been the only ones. I was so in the moment of chatting it up with friends and watching Grayson build up his pebble collection along the way. I got a little choked up. My boy was doing this. All on his own. Determined. And we had friends and family alongside us was we inched toward the finish line. How beautiful.

By then I began to receive tons of texts wondering of our whereabouts. I hadnt seen Charito or Triston in over 1.5 miles. We turned the corner and there was the finish line...covered in a rainbow of balloons. As I neared I saw our whole clan standing under those balloons looking on for Grayson. No one had left. They could have headed home and put their babies to bed, get ready for the next work day, eat a late dinner, or whatever they needed to do...but NO. They stayed. They stayed to the end. Just like I know they will be here for us on the day cancer is an end for our family...gone. Triston saw us and ran toward me. I held my boys hands and leaned into Caden in the Moby for a tiny-mama's here-kinda-hug. We were steps away from that finish line. I glanced across the field of tents noticing the mass of people ending their evening and here we were inches from the climax of ours. All of a sudden G's CHOO CHOO CLAN cheered their hearts and lungs out and I lost it. G caught onto the excitement and ran toward daddy and the balloons. Cameras were clicking like crazy. It was such an amazing feeling. Inspirational. Calming. Inner quiet. Full of love. Endless support from irreplaceable people in our lives. I felt so warm inside.

Moments later we hung out a bit more while the kids played. We said our nitey nites and gave our hugs and kisses. I took a look around the tents and we were the last couple of handfuls of people remaining. As I was about to scoop up the boys to head back to the car a man came running toward G. I noticed it was a photographer. G was on a radio flyer car rider thingy and the photographer snapped away his camera. It was a sweet pic. I cried then. I cried bc I was flooded with two thoughts:

-what a sweet pic. What a story that man can conjure up just seeing a lil baby with a huge survivor tshirt on. A tear jerker kinda story.

-and then the sweetness of that photographer's moves abruptly changed to anger and hurt. The knowledge that it shouldn't be MY boy he is taking a pic of. NOT MY BOY! Not fair! Go away! All of it, just go away! It shouldn't be my boy, it shouldn't be any parents' child! That made me turn away from the ones I love and have my own little soft quiet cry to myself. I didn't want to look anymore.

But really, please know that overall that evening was an unforgettable experience filled with an abundance of love, smiles, and fire. It gave us a nice spin on those past 8 weeks of the nasty rollercoaster I didn't pay to ride on. I didn't want that ticket. No one does. But I look forward to next year's walk and the many more to follow. Holding my baby boy's hand the whole time!

Thank you and much love to the crew that walked-

Mamac

Uncle Neal, Auntie Mimi and Ayden

Uncle Mike

Uncle Tommy and Aunt Vicky

Uncle Dave, Auntie Najette, Aidan and Eileen

Uncle Joel

Uncle Kevin, Auntie Maria, Ro and Papa S.

Ate Lisa, JC and Cousin RJ

Ninang Leslie

And thanks to those who wanted to attend but were unable. I know you were there in our hearts!

And an enormous thanks to those who donated. We had so many family members who even formed their own fundraising pages to earn donations.

Our grand total was $1, 970.00. That's $970.00 over my original goal!!!!! Everyone of you are awesome in my book! The Cacal family thanks you from the bottom of our hearts, Grayson thanks you and the thousands of blood cancer sufferers thank you!

All my love, always.

Grayson writing his name on our team banner. Thanks for organizing it Auntie Najette!

Our walking clan

Going or a ride with Auntie Mimi (Amy)

Look at me, ma!

Shirt is HUGE on him!

It was too encouraging these 3-they wrote the letter G on their cheeks!

Finish line

Steps approaching the finish line!

Finally woke near the finish line...who me? Huh? Whatd I miss?

Hi fives!

There were carnival games and he was so proud of his little trinkets!

Ride 'em cowboys

Our lil man! Oh, that smile of his!

Apparently RJ told G a joke and G didnt think it was too funny..."dont you know this is a serious event we are attending, kid?!" Love it

Putting T to work

SURVIVOR, SURVIVOR, SURVIVOR...let's just keep repeating those words, okay!

Behind

I know I am super behind in updating but I just can't get my act together. You would think that blogging would organize me and help me vent but it just seems like an overwhelming, unenjoyable task the past few weeks. I will post my LLS walk pics and blog soon. I will update you on Grayson's numbers in past few weeks soon. I will vent about how much I hate life and OCTOBER right now very soon. And I feel Caden deserve some spotlight seeing as only a handful of people have even met him in his 12 weeks of life so he will get a post on this blog soon. It will all happen SOON. As soon as I can function and breathe and just BE a little bit better I will let you all in on it. Just know we are surviving day by day even tho it has been particularly hard the past 22 days to just do. I hate the rut we are in!!

Huge gap update

I havent blogged bc it has been an insane couple of weeks. I am not even going to write much here bc it is aching my eyes to look at this screen. Friday, October 1 I came home feeling flu like from Triston's field trip. I have been sick ever since. First dr said virus and no fluid in lungs and sent me home. Second dr said I had a sever throat infection and at least gave me antibiotic for that. He actually paid attention to each and every symptom I described and wanted me to get better fast when I mentioned what I have going on at home. I thought it would clear up all symptoms. It has only cleared up the infection in my throat so I can taste some things. Energy level is so low. Charito got the same thing as me by Oct 3. He is still sick as well. We cant get aptmpts this week bc there are none fitting our schedule and Charito cannot take ANY time off. We are both suffering from coughs that cause abdominal pain and lower back pain. We are so short winded that trip up the stairs is exhausting. I have never been this sick before. Thru that first week all boys were fine. Then fast forward to this Monday, Oct 11 during Grayson's chemo treatment. He was absolutely fine the day before on his bday (prob the most boring bday ever bc daddy and I were so sick and T was not himself-fevers off and on all weekend since he returned home from school Friday). He has been fighting this cough and cold for almost 3 weeks but we just monitor every week at dr and daily at home. We were told he could have that cough n cold the whole span of this phase of treatment. Well, G woke that morning pretty quiet and I was rushing to get him and T out door (yup, had to make aptmt for T at 8 am and then be at G's 9 am chemo). He slept the whole ride there and during Ts aptmt (He has an ear infection), not normal. I was worried. Thinking his numbers were low and may need transusion again even tho we had one last week! As soon as we sat for port access I could hear him wheezing so hard! It scared me. I knew pneumonia could happen overnite for him but seriously. They gave him nebuelizer treatment which changed nothing. We did chest xray and his lungs were clear. Kwon seriously had this look on his face that he didnt know what to do. They called Belmonte, actually paged him w Grayson name in it to confirm he would drop what he was doing and help us. Belmonte was doing hospital rounds but would meet me downstairs in 10 minutes. The only thing I could think was his asthma was in full force and it wasnt even freezing out yet. After Belmonte looked at xray he said his lungs are def inflamed and irritated. It was a respiratory infection on top of his asthma kicking in. All this occuring overnite. He was just glad it wasnt pneumonia but we still needed to keep eye out. We left w an oral steroid to clear his lungs and also instructions to pick back up w his asthma regime ( inhaler of albuterol and flovent every 3-4 hrs n I had to wake him to be sure we kick this thing) which we havent had to do since May. It truly is a seasonal type. That was all on Monday, I was to come back next day so Belmonte could listen to him again. I got home and all of a sudden Caden's eye was really red and it didnt go away the next morning. I remembered a note coming home about pink eye in Ts class so I brought him w for Belmonte to look at. Oh and I did I mention that G fell out of our bed MOnday nite?! According to T he was climbing out to follow me to the bathroom. I didnt see it so I am monitoring that as well. I immediately checked his port when I ran in bc it is in access mode this week so he has needle and tubes protruding off his chest. There didnt seem to be any redness or swelling or hasnt since. So then on Tuesday, Oct 12 Belmonte said G was still wheezing but sounded better than day before. Caden did not have pink eye but he agreed I needed nothing else dramatic in my week so he gave me eye drops for the runt just in case. So now everyone but daddy is officially on some type of med! We continue to monitor G closely. I call Belmonte at end of week to let him know how G is. He woke really irritable this morning and clingy all morning so far. T missed school yesterday but went today ( I needed him to and besides he was fever free and on amox for 24 hrs). Caden's eye is so much better already. I just worry about this juicy cough of Gs. We are going for naps now. And I hope this drama ends soon. I am gonna try and get another aptmt for myself too. Oh and Bryley has been throwing up, too! That about rounds it out dont you think?! Ill get back to you all when feeling better about his latest numbers and track we are taking as per last dr conversations. Its good news and bad news. Later.