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.

THE BIG 2!

Building his taco-his bday dinner request.

I have to say it was not the most exciting bday for the family but G didn't seem to mind. At this point in October Charito and I had pneumonia. T had an ear infection and C was getting eye drops to prevent an eye infection bc I was freaking out about pink eye in T's class. There was no energy flowing through the house other than T n G's. The plan was to sneak out with T to drag my sick butt to Toys R Us. I so did not want to leave the comfiness of my home but I was determined to make it out for a bday present for my lil man. As T and I snuck out G whined to come along. Of course, he could! How was I to turn him down when it was his bday afterall. I think I was in that crazy busy place for almost 3 hours! Primarily in the Thomas aisle, of course. Over $200 later and we were headed home. I never thought in a million years I would spend that much on Thomas (remember how much I didn't USED to like him n all his pathetic friends?) but things have changed.

The rest of the day was low key. Naps. Taco Bell. And a candle in his Oreo cookie bc that is all I had energy for. Guilt was all over me that day but I just couldn't muster up all the mommy goodies I had in store for that little boy.

The boys had a great day as far as they knew. They were content and smiley and playful all day long. Total brotherly love. It was the best thing out of the day seeing my view from the couch gave me a front seat to it all.

The worst part of the day for me-I didnt get to share in the low key festivities with my family at all. We couldn't expose them to our pneumnia and other illnesses. And the only reason Mamac n Titamel were in on the action is they just happened to stop by as we were blowing out candles.

It was difficult for me. I was grateful to have what I did in that candle-lit moment but felt like I was missing out on so much more. Like I was living my bday vicariously thru G's moment. You just couldn't help but wonder.

The rest of October (which I dont even recall if I ever blogged about) was spent recovering:

The day after G's bday (Monday, Oct 11th) G slept the whole way to treatment. As he woke he all of a sudden sounded horrible. That was true wheezing without a doubt. He was NOT like that the day before, not even before he went to bed the night before. They immediately ran a chest xray. No fluid-thank goodness-no mommy n daddy's pneumonia. But his lungs were inflammed. We tried a nebeulizer treatment but it didn't improve much. I could tell on Kwon's face he did not know what to try next. Belmonte was paged right away. They were not sure if he would even respond bc he was on rounds in the hospital. Nurse Jennie placed GRAYSON in the page. Within minutes Belmonte called back and said to meet him down in his department in 10 minutes (Have I mentioned how much we love this man?!). After seeing Belmonte he determined that the chest xray indicated a respiratory infection tweaked even more so with G's asthma. It had returned. We knew it was more of a seasonal thing but did not think we would have to deal with asthma meds again til winter. Well this respiratory infection with the asthma component made all this sneak up on us overnite. So we left with a 4 day steroid to kick the infection's butt and were to continue his asthma meds until the weather improved (Spring). We needed to return the next day for Belmonte to listen to him one more time and see if it had improved even the slightest overnight. It did a bit but he was still wheezing. The steroid we were given did it'sjob by the end of the next day and the wheezing was gone by Wednesday. Belmonte even called Friday to check in on us (He is so good to us).

That week I had been to one or more doctors 5 days out of that 7 day week, including Saturday. Whether it for a kid or myself. It was tiring.

Other than the drama of G's respiratory infection and spending all of Oct nursing ourselves back to health it was an uneventful weekend. The weeks flew by. So fast and with so many germs that I did not see anyone from my side of the family until Oct 29th. Amy and Ayden were able to visit. It was much needed. I saw friends only bc they took on the duties of taking T back and forth to school. And we saw Mamac n Papac n Titamel bc they often dropped by with food or cleaning assistance.

And considering he had a respiratory infection that could have dangerously spiked to pneumonia having two parents carrying it and whatever other germs our house was breeding, G's numbers were surprisingly good that month. He only needed two transfusions-one early in the month and one later in the month. At one point his ANC was over 2, 000. Awesome. It was numbers like that that convinced me it was ok to take him to T's Halloween bash at school, shopping at Carson's (I may have boys but they really do love to shop! I taught them well!). His weight hovered around 19.5. It was a really good month in my eyes, even if it ended with a hospital stay. It was to be.

G's Taste buds that month-a whole lot of bologna (this baffles me bc the only way I could eat it as a kid was with miracle whip n lettuce and my kids eat it plain-gross), broccoli (yay, finally able to get more veggies in him. I gave it to him until he was gonna tell me he was tired of it! He still is eating it almost every other day for almost 3 weeks now), yogurt, cheese sticks, ham, and Lance Variety Pack of sandwich crackers, chocolate goldfish and the most recently discovered bread w/ mayo n ketchup. He didn't care for any mcds. Milk was still his number one drink.

So grab your glass of milk and let's cheer to a healthy-every-member-of-the-Carper family in November. CHEERS to that!