Two years...

down, 1.5 more of chemo to go.

One Hell of a Year

Aug 7, 2010 First time home from hospital

His shirt says "Fighting Fish"

July 2011

Still my Fighter

July 31 marked the one yr anniversary of Grayson's diagnosis. I am sure you have already read about our party plans that weren't quite a grand party, but a great end to the day, nonetheless.

Some days THAT day seems like just yesterday. Caden is the easy-go-to-constant reminder that it was not just yesterday. Boy look at that boy grow! And then there are days it feels SO long ago. Maybe bc that initial fear and shock has dimmed. And yet the unknowns and so many other fears still continue to exist. It is a never-ending cycle. A constant mind game.

No doubt it has changed us. Individually and as a whole. The list is long. And it will undoubtedly grow in positive and negative ways. But I guess if there is anything I can comment on (other than the obvious changes you have read about in G here) is my own lessons.

I cannot completely explain how something like this or any news that rattles the life you know, shifts things into a perspective you never knew existed. How almost immediately you no longer care about the crap that SEEMED to once matter. The stuff you took so much time and energy to worry about or put into place doesnt even fit in anymore. I remember not even caring how we informed people of the news. So what if one person started some chain email or texting tree. It was piddly compared to the decisions we had to make in those first 3 days. But most importantly, the automatic sense of what I call a positive-twist took over my thinking. I almost always look for and/or find the better side to a situation, news, etc. It doesnt mean I may COMPLETELY believe it will be rosey in the end but a mind shift took place. Is it the living in fear of loss (of anything/anyone) or the reality of such a traumatic change that makes me look for that better side to the story? I don't know. But it comes easy to me. I dont hold grudges anymore. I dont look for perfection in everything I do anymore. I DONT care what people think anymore. One sentence one year ago changed so much about me.You just dont care about anything other than what is right in front of you. Your world both shrinks and expands. It shrinks in a sense of what you are allowed to do as a family, person. It shrinks down to the perfect size of what is doable in that particular season of life. It expands at the seams from the love and support both loved ones and strangers shower you with. Either way-it is overwhelming. The whys still pop up. But the need to move on goes into overdrive often. And what helps is being reminded a year later that is was nothing we caused, did, could have seen coming or could have prevented. IT chose him/us. I know comfort seems like an odd word to use but it is a relief (as a parent) to know you were not at fault. It was not something I missed ( and if you know me well enuf you know I am VERY detail-oriented). Does it make the pain go away? No. Does it make it a little more doable? Yes. Press forward.

I still remember what he was wearing that day. ORANGE. Who knew then we would discover it to be the color representing leukemia?

And since then this color has represented or fostered so many other aspects of my life, some intentional and others pure coincidences. A little scary.

I have not only learned to not sweat the small stuff, but embrace the little things that come our way. ANY little thing.

We now know there are MANY good people out there w humongous hearts and dedication to our little clan of 5.

I know what absolute exhaustion feels like (more than once). The kind you feel after giving birth (sorry gentlemen) but amplified. I have experienced different types of exhaustion as well. I wish I could say some were post-marathon-for a good cause-like (one day!) but not yet. The claw the floor type of anger and tears days. The home from the week long stay in the hospital, walk in the house door and have to keep on going mommy days. The why why why days. The autopilot days. The numb days. The more nurse than mommy days. The guilty feeling after many bad mommy days in a row. I could go on.

I have learned that why I do what I do everyday has no question. And if there is anyone questioning it the answer will always be the same-my boys. G may be the neediest but Triston and Caden need me in their own ways. Balancing all of that is harder than I ever would have imagined. The several roles I play overlap so often sometimes I dont know if I am coming or going. A once organized mind w a great memory now has gaps. Not something I am proud of. And I have to say-I get tired of hearing "well, yeah it's hard work with 3 kids now". It has very little to do with the addition of Caden. He will NEVER be the blamed part of this equation. It is the leukemia. Its own needs, prison-ish feeling and its demands that complicate EVERYTHING in our life. IT is the element that runs our lives. IT chooses our day to day. I have little control. I learned that very quickly. I always felt I would handle 3 kids w no problem. And so far I have survived it, even with the leukemia cloud hovering its nasty greyness above us. Do I have tough days? HELL yes! Do I enjoy the extra time it itakes to pack up a diaper bag for 3 ? NO. Am I looking forward to no more diapers? Yes. But as I have said before. If we had to go thru hell, I am glad I have my 3 pieces of heaven with me at all times. The third angel just happens to be the icing on the cake ;)

And it was not until recent months that I finally saw that I needed to think of me once in awhile. I have to admit tho, just bc I have realized that I am just as important to take care of doesnt mean I have done tons about it. Baby steps, right? I am trying my best to remember to eat n drink before 2 pm. Having that urge again to participate in a spa day, retail therapy or nice evening out w a girlfriend has taken me some time but I am getting there. I have promised myself to get better at it. I even purchased a membership to a local yoga studio to get the ball rolling. So, it is def a work in progress.

As I thought back to the first few mos each month light bulb flashed its own highlights (or lowlights) without much effort. It was a 365 day whirlwind!

• July 31-Aug 7: our first hospital stay other than the birth of our children. I remember feeling as if we would be there for mos bc anytime we asked when he could go home they responded, "Let's wait and see". In hindsight I see that so much depends on counts and body functioning. I know now that LEUKEMIA calls the shots.
• I remember feeling as if he was the most fragile thing in the world once we returned home. I just wanted to wrap him up in bubble wrap (and still want to sometimes). Total scare tactics and precautions were in full force. It was if someone replaced him some delicate creature. And since my mommy senses seem foggy. I am def not as confidant as I used to be with some things.
• By mid August Triston began his 4 yr prek school year. I was MORE than blessed with the teachers and staff from the get go. I could rave about them for pages. He was in unbelievabble hands. But for the first time in yrs he cried as I dropped him off that first day. It shattered my heart into tiny pieces. More pain I didnt think I had left in me after the previous weeks. My most confident child was hurting too. Ugh
• By Aug 29 we reached remission!!!! No signs of cancerous cells in his body anywhere!!!
• After two weeks of being home with a cancer patient I had down a new cleaning regime. It was an exhausting one but necessary. And as the cold season approached us each one of us became used to wearing masks for germ control. Nowadays it is simply routine for any one of us (T n G included) to plop on a mask just in case.
• The kids received so many toys those first few weeks. Anything to make home life exciting. I could only rustle up the energy for a handful of crafy things so toys were our backup. When you are on lockdown you gotta come up with something.
• We adjusted to NOT doing typical family things as a family. Grocery shopping became a one parent thing. T tagged along in order to get out of the house and make things feel somewhat normal. I missed all of us going out. At that point we had only been out as a family once -the day of diagnosis and that was it. It did not occur again until my bday weekend when we went to Morton Arboretum. What a fantastic day!
• 8 weeks after diagnosis we attend Light the Night, the LLS walk. In the past we had attended for Rosalba and now we go for G. I recall my voice shaking as they asked me my purpose for attending at the registration table. It was the first time I had to tell a perfect stranger. I held back tears as I picked up his SURVIVOR t-shirt (6 sizes too big!). What a night! A night in which G walked the entire thing all on his own! Oh that sight of him crossing the finish line!
• By October my body got pissed off at me. Charito's too. We were slammed with pneumonia the entire month. I distinctly remember not feeling well enuf to get out of the house until Halloween. Even G's bday on the 10/10 resulted in a candle stuck inside an Oreo cookie bc that is how little energy I had. And low and behold the one day I am ready to get out and DO for my kids we encountered our first non-chemo related hospital visit. A fever led us to the hospital while Triston and Caden trick or treated with Amy, Neal and Ayden. We missed Caden's first Halloween. G had Halloween in the hospital. That was a scary weekend learning what these type of visits entailed. So much to worry about.
• November led us to our second fever-induced hospital visit, Thanksgiving weekend. Another holiday in the hospital. But the hospital fed us well and friends and family fed us even better!
• Nov and Dec were blurred with every other week hospital stays. High doses of methotrexate surrounded us. We made it home in time for xmas eve.
• Triston's school blew us away with a massive display of compassion when they delivered a mountain of gifts to our doorstep!
• Grayson woke xmas morning not himself. Once he puked on my lap he felt much better! I will NOT forget that xmas for sure.
• My family came into town!
• The winter season constantly had us in worry mode for germs and fevers. We got in the habit of checking his temp 3x a day just in case. Masks were a must.
• January I returned to work. SO NOT easy. STILL isnt. thanks alot insurance :(
• We continued with chemo treatments every week. We were nearing Maintenance.
• February my motherinlaw shockingly diagnosed with stage 4 lung cancer. More uncertainties.
• By the end of February my fatherinlaw was very ill and we almost lost him. He remained in rehab until May. He is doing well right now.
• The first week of March we hit Maintenance. The light at the end of the tunnel! But it was not so kind to us early on. We were in and out of the hospital with fevers, colds, respiratory infections thru the end of April.
• Between Nov and March we lost 2 dear friends' fathers' unexpectedly, my Teresa to cancer, my uncle, my principal and another friend was diagnosed w a brain tumor. I saw the same room of the same funeral home over and over again. These events marked the first time (in March) I ever pictured my Grayson in a coffin. I hated what those deaths had done to my spirit that day. It was clear the cancerous evils had overcome me and it terrified me. I have not gone there since and will not again. This kid hasnt provided me with any indicators that I should ever have to again. He is that amazing.
• Grayson no longer called Triston 'Tis Tis" or Dr Kwon 'Dahter Twan'. It is now 'Tiston' and 'Kwon'.
• My parents visited to help us during the trying times of babysitting while my father in law recovered and my motherinlaw prepared for tests and treatment strategies.
• My niece Charley arrived March 29th!
• In April we had two hospital stays including visits from Home Health nurses.
• Mamac returned to work, feeling good in spirits. She returned to the store and her fav job-caring for our 3 boys.
• The end of April marked THE most memorable evening-The Cacal Benefit. A night more people we could have ever imagined banded together to celebrate life and a strong little boy!
• Early May I attended the Quiet Heroes luncheon. A step toward my own healing process. My first cancer event for my own child.
• May also marked the month Caden got chicken pox. A crazy day resulting in G's immediate hospilization for IVIG to prevent him from catching. And even tho we infused his body with antibodies to max protect him he still ended up catching a VERY mild case 11 days later.
• By the end of May Caden was on a sippy cup and close to walking. T also finished up school. I could not have asked for a better school year considering all the crap in our lives. He is absolutely amazing. Another emotional day at his grad ceremony.
• By the time summer reached us G had gained some more weight! He teetered at 20 n 22 pounds in Jan and is now a whopping 24. 12 pounds!
• We filled the summer w playdates, picnics, and family gatherings. Lake Geneva (my parents came to town again!), Key Lime Cove thanks to Bear Necessities, Arlington race track, and restaurants. G has felt great since he left the hospital w pox on June 13th so we figure now is the time to dabble here and there w some activities bc once autumn hits we are back on lockdown.
• By mid-July Caden was walking!
• We had some new additions to the house, like a new stove n dishwasher. Those ended in ridiculous messes resulting in major electrical and plumbing repairs. Drama we didnt need but it is done n over with and the house is better for it.
• We even attempted a party for the boys that never occurred thanks to water damage in the basement. Go back to my previous post to recall that weekend. The carpet removal, asbestos scare and new carpet installation were not what I call a vacation!
• G reminded us of how much he is not only growing up, but squashing cancer in his own way-taking his pills without mommy crushing them anymore. All pills previously possessing our own titles like PURPLE MEDICINE, BREATHING MEDICINE, WHITE MEDICINE, BROWN MEDICINE, LUNG MEDICINE, NO MILK MEDICINE now are preceeded by the words BIG BOY MEDICINE. You should see this kid work them pills toward the back of his throat and swallow them. He has a method in which saves the water til the end. It is HIS way. Too cute.
• Days before G's one year anniversary we learned one of our filipino cousins was diagnosed with Lymphoma. A 19 yr old with so much ahead of him, so much he WILL still do. His positive attitude is inspirational. His openness and vulnerability to ask us specific questions about G (treatments are pretty similar) have been therapeutic to me. I feel like G's experiences are allowing me to be there for him during something NO ONE should be going thru in the first place. I am more than willing to be there for him anyway can. Even after his own losses in the past few yrs he continues to be an amazing adult. And he is kicking ass! He just finished up his first round of treatment in record timing!
• Through the summer I attended a bible study. There I met a phenomenal group of women. Mostly strangers. But woman I would hang with any day! There was such a diversity in age, wisdom, life paths and yet we all bonded over the ups and downs life has thrown at us. I found courage and strength eminating thru their words, prayer, praise and encouragement. 8 woman I will always cherish for entering my life. The study titled Brave! enveloped me in numerous ways. I learned alot just by taking time for ME every Wed morning. Do I have any clear answers? No. But now I know where to start. The beginning. Almost like thinking and learning like a preschooler. An innocent mind trying to piece it all together. I just need to accept when to turn to God and let go. I cannot do it all. I really am trying to understand myself in that manner. I am work in progress.
• July 26th my littlest turned 1!!! If he only knew what was written above and how he was barely scathed by it all. The thought that the addition of him into our family complicated things never crossed my mind. He made us better. His mere presence helps us heal. He is truly completes us in too many ways to list here. We celebrated w a trip to Toys r Us for him to pick out his own present (and guess who else got some goodies, too?!). My number one memory is watching that tiny body trot down the aisles in awe of every item in front of him. He was so overwhelmed and in the end gravitated to whatever his bros did. It was priceless to observe! Then we went to Chiles for dinner. Oh how I missed them southwestern eggrolls! It had been almost 1.5 yrs!
• On G's actual anniversary he didnt seem himself. He did alot of sleeping that day and we thought for sure we would be taking a trip to the ER. Oddly enough the fever never peaked and he was fine the very next day. That day we had Caden's 1 yr checkup. It was pretty ironic seeing Belmonte almost a year to date since he shared that sentence with us. We presented him w a gift. Not just an anniversary gift but a simple reminder of how lucky we are to have him. That we intend to share the many milestones G has in store for us (as well as Triston and Caden) for many more years. I wish more parents in this world had a dr that doesnt just say things like "If you need anything let me know", bc he says it AND means it. He treats the whole child, includes the whole family in assessment and attends to the details. A true wonder he is! We ended the evening at Portillos. A place we will revisit every year for his anniversary. I couldnt imagine being anywhere else than where it all began.
• As summer wound down (sooner than later, unfortunately. I went back to work Aug 3!) It gave us time to think back on so much before a new chapter of school years and more structured days. So much has changed and yet the important things remained important (actually even more so)-family. Attending to what is right in front of us, giving to others wehen we can in any way-big or small. The smallest gesture can spread joy and smiles for miles.
• In Aug I had my own health concerns to worry about. After some tests it eventually ended up being nothing to worry about but I cannot begin to describe my fears leading up to the results. When I wasnt thinking about my usual stressors I was thinking "What if something is seriously wrong?" Not now. Not right now. Save it for when we are past leukemia. Save it for when they are older. Just not now. Lack of sleep, anxiety and many nights of crying myself to sleep took place. It was very difficult to concentrate on my first few days back at work. It was easy to say "Don't worry about it til we have something to worry about", but that was near impossible for me. Once you live with cancer your mind goes straight to cancerous fears regardless of the symptoms. And that reason is two-fold for me. 1. I live it everyday without any escape 2. The sheer shock of his diagnosis prior to any symptoms. I now fear that any little thing could be a precursor to something dreadful. It sounds crazy but I tell you, with all the cancer that has entered our lives in the past 365 days I dont know anyone in my circle who does not feel the same. It changes you.
• In one years time Grayson considers the hospital his second home. He has his routines and expectations, even as a two yr old. He is very verbal about what he wants. And he is the happiest kid I have ever encountered while in the hospital. It makes it look so easy! damn!
• In one year he has shown no signs of developmental regression. He continues to be on target or advanced in developmental domains. Wouldnt it be amazing if we could avoid Chemo Brain altogether someday?!
• Our last summer hurrah was Peds in the Weeds-a pediatric oncology picnic in the forest preserve. Talk about a shin-dig. What a wonderful event for families to hit the pause button for a few hours. There were tons of moon bounces, food, miniature golf, DJ and dancing, games, and G's fav Dunk the Docs. That was G's fav. He got to take a shot at Dr Dell and when he couldnt throw the ball far enuf Dell told him "Go get it, G!" and G ran to hit the button and splash went Dell. Then G swears Dr Kwon splashed him when he went down from another patient's turn. At clinic a few days after G made sure to tell Kwon that he splashed him! And that he danced with Aerum! And if you ask T what his fav part was of that day he tells you 1. the miniature golf 2. losing his tooth (all my fault. it was loose for over a week and I rubbed his lips so hard, forgetting about the tooth, and I pressed his lips against it and pushed it out. I caught it jsut before it landed on the grass). He was excited to get a visit from the tooth fairy. Made it easy to remember when he lost his first tooth. Thank goodness he reminded me she brings toothbrushes bc all she had intended was $2. Lucky she had a battery operated toothbrush in a drawer!
• And of course we will not ever forget the number of people and opportunites that have come our way since his diagnosis. From the list of nurses that care beyond words, his girlfriends (especially Aerum and), the tv channels Grayson (and my blubbering cry baby ass) have appeared on, the newspaper pics and articles we have been a part of (they recently did a followup article in the Trib on July 27th including the same pic) and my fav -the inspirational video G took part in with his spotlight nurse Jenn for LGH. More mommy therapy I never expected. The new friends I have been able to add to our company.
• As tiring and uprooted as it has felt we survived it all day by day. And that is exactly how we live now-day by day. One step at a time. We have learned how to juggle too many insane roles for one person but managed. But it does feel like a constant battlefield of loneliness vs crowdedness (it's MY word). Traffic jams in which you cant breathe fast enough and dirt roads slow enuf you are scared of what is around that bend. Yes, it gets tiring, annoying, frustrating and full of pissation (yes, another MY word). But all that is surrounded by constant love, support and concern. Not just for G, but all of us. Do I feel distant from family? Of course. But it will come around full circle someday. THIS is what needs to be cared for NOW. We will get to the LATER later. The NOW is all encompassing for a reason.

It has been quite a year. And I am sure I am forgetting alot. But it is what it is. G has more than proven he will push through the ride. You should see this wild child the past 2 mos! A highly energized 2.5 yr old with power to spare. His glee and innocence are precious. My T has proven he will try his best to make sense of it all and accept to the best of his ability the cans and cannots we are allowed as a family. I am so excited for his Kindergarten yr. I just know he will continue to shine and wow us. And C, I hope that happy baby boy continues to be happy and ultimately proud of the stories we will share one day. As for Charito and I-we will keep holding each other up. We have undoubtedly done more of that in the past year than we have in our 17 yrs together and we have no intention of stopping.

Thank you for reading along with us the past year. I'll keep em coming!