Peds in the Weeds

August 7th, 2011
This was the first cancer event we attended as a family. Many opportunites have crossed my desk from the Midwest Childrens Brain Tumor Center
 (http://www.advocatehealth.com/lgch/midwestchildrensbraintumorcenter), the pediatric oncology department and other pediatric cancer organizations the past year-tickets to this and that, party here and there, etc. , but this was one we were actually able to attend bc everyone was finally feeling well  ( and Charito and I were ready to take that leap as a family). We even agreed to attend right alongside R and her family (remember her? 8+ yrs ago Drs Kwon and Goodell treated her for lymphoma and her sis and bro in law are G's godparents and our great friends. A little scary that 8+ yrs apart here we were attending the same event for the same ugly reasons).

The event was described as a huge party in the woods. Picnics, balloons, games, activities and the ever popular Dunk the Docs. I remember the first time I heard about it. It was during our very first clinic visit one week after the diganosis. I remember thinking "How can they talk about some party in the woods when I don't even know what is going to happen tomorrow?" It was really hard to picture any of this back then. To make anything out of each upside down day. My, my how far we have come.

When I asked the kids what their fav part of the day was:
T: "Losing my first tooth and playing mini golf."
G: "Dr. Dell splashed me! Dr Kwon got me wet!" Yes, he dunked the docs in the water tanks. He was given a free pass and Dell told him to just run up there and push the button. We will work on that pitcher's strike for the future!

 G and Nurse Jenn

 G and Nurse Shell

 balloons representing each patient

 The balloon release

 G and Dr Dell-after the dunking!

 Dancing w his girlfriend Areum

 choo choo

 running free

As you can see from the pics-how could anyone NOT have a good time?! It is now an event we plan on attending for years to come. The detail, effort and organization put into such an event was nothing but impressive. And to see the faces of patients currently battling cancer, those who won the fight and continue to treasure the event and those attending in memory of  fighters was nothing short of surreal. Another memory for us to hold onto.

Update

We have been trucking along! We are still in Maintenance. We have not (knock on wood NOW) had a hospital stay since June 13th w the chicken pox. Grayson has been in GREAT spirits with HIGH, HIGH, HIGH energy! Cancer would not enter your mind if you saw this kid the past few months. Another blessing to tack up there. The energy level is so active that we are literally bumping into typical 2.5 yr old injuries-the scrapes and bumps bc he thinks he is some type of super entity (which let's face it, he kinda is). We monitor them all, ice them all and luckily have not had to call in for any so far. Even better-no bloody noses or overbleeding with any injuries. Counts have been great. His last aptmt on August 10th he weighed in at over 24 pounds! Kwon was pleased!
We go back in next Wednesday. He is due for a another round of steroids for the remainder of that week, a spinal tap and injection, vincristine and counts. Let's hope he has gained more weight. I was finally able to pass on 12-18 mos shorts to Caden and get G into most of our 24 mos / 2T shorts. He has been able to wear 2T shirts for a while now. Some shorts we still have to roll up the waist but its progress. Quite the milestone in my mommy head seeing as most of the summer I watched him wear exactly what he wore last summer. Was nice to pass it all on.

I will keep you posted after Wednesday!

Steroids get outta my way!

The kid loves him some croutons! He

was helping me unload groceries and he discovered these. All of a sudden I heard a shrieky rant, "Mommy! You buy these?! For me?! Oh my gosh! Thank you, thank you!"

Wierdo!

Sushi meet Sushi

Been thinking and singing and crying

For months now I have been meaning to write this post. And each time I hear one of these songs I am reminded of it. And this week I have felt so blah that music has been my therapy. It was time to write this post.

A year of song.

Here goes...

Rewind to summer 2006. Triston had just turned 6 mos old. I was sitting in the parking lot of Charit0's work waiting to have our first meet-daddy-at-work-lunch. It also happened to be the day of the Eric and Kathy Radio-thon for Children's Memorial hospital. It was actually the first one I had listened to. It is the one I will never forget. There I heard the story of a toddler with a life-threatening illness. These stories are narrated by the parents themselves which are then woven into a song. The song playing during that story was Snow Patrol's Chasing Cars. It was the first time I had heard the song. That story blended with that song literally stole my breath. I mean, I was literally gasping for air as I sobbed during the segment. It was the first moment for me as a mom to have that realization that one day I would lose my child. That the possibility is always there. He sat in his car seat sleeping soundly as I sobbed. My body actually ached. Just listen to the lyrics. I have added a playlist to this blog for the sole purpose of this post. For the songs that impact us on this cancer journey to be heard and remembered. So listen to the song and rememebr the lyrics.

Did you do it? Got it?

And now picture a mommy's voice recalling the moment her son was on his death bed and he leaned over and whispered to her "I'll be ok, mommy". Go ahead and grab your tissue. My eyes well up each time that thought crosses my mind.

I never wanted to imagine what that felt like. For your own son to reassure YOU at his last breaths.

Before the segment ended I had already pulled Triston out of his car seat and held him tight. I was a mom. On a road of endless love AND heartache.

And I should note that up until last year's Radio-thon Charito and I listened and donated every year. Last year I tried to listen. To connect closer than I had ever been able to in the past. It was too much. We got through one story and shut it off. We made our donation and moved on with our day. I suspect this year will be the same.

Fast forward over a year from then and I was taken back when that song came on again. Triston was older and as I fought back tears remembering that day in the parking lot I told him it was our song. And since then it always has been. He even knows it now. For the past few years, on bad days, it portrayed a deep saddened memory for me alone, but a positive energy between T and I. A sad memory of how I felt, never wanted to feel and the horrendous pain I felt thru those radio waves from that family. But on good days, it reminds me of those quiet moments between he and I when the world is on pause. He and I are so enveloped in our love in that one moment nothing can penetrate it. I would do anything for him. Give him anything. He is mine to love and protect forever.

So there you have it. At 6 mos old, for T and I, our song came to us just like that. Not that I had ever thought we needed a song but it happened and I love that about he and I.

But, I remember thinking when G was 6 mos old that we didnt have a song yet. Again, not that we needed one, but arent so many of us connected to one person or another thru music? This didn't mean I went hunting for one, no sir. I knew it would come to us in time. What I didn't know is that it would take over 22 mos and a cancer diagnosis to be swimming in a few G songs. Without any invitation, just weeks after his diagnosis Snow Patrol came on. It was on a day I was returning from a chemo treatment. I obviously sobbed (and pulled over to do so). How could this be happening? The one story that yanked at my heart and had me praying that would not be us (or any other family for that matter) was alive right in front of me. I cannot tell you how many times in the past year that thought has crossed my mind. This kind of suffering is not fair to any parent. I never want to join that mom in that moment of life and death.

Then months later Sarah McLachlan's ( I am a huge fan) latest album Laws of Illusion was released. Her single Forgiveness played on the radio and the tears flowed. I didn't care that the song was really about her separation from her husband (her drummer). That may have been her devil, but mine was cancer. I do not forgive cancer. The way it tears at G, us and myself.

You ask for forgiveness, you're asking too much

I have sheltered my heart in a place you can't touch

Cuz you don't know much about heaven, if you have to hurt to feel

I couldnt get Sarah to add to my playlist but look it up, its a goodie! Added plus-she's a hottie!

As for Evanessance's Bring Me to Life-it's my angry cancer song. You will find me blasting it from the car. It is full of rage, desire, begging & pleading, and even life. It's an addiction.

By March I was moved by Coldplay's Fix You. It became the theme song to Grayson's benefit and gets me everytime.It is not just the words but the memory of that evening. So difficult to describe. I cannot imagine a better song. That committee of ours kicks ass. I will forever be trying to "fix", just like any mommy would. Who knew G would need the ultimate fixing? Still hurts to think about.

Live's Overcome (well , it just speaks to me -not to mention it is my all time favorite band). That drowning feeling, giving in to the empty, and simply being overcome by it all.

And then today I caught up on a blog I have been reading since one of our hospital stays in Fall 2010. Maybe you remember it? Baby Ewan. The precious infant that passed away at 19 days old of a hear defect. Well, today Kirsten shared a song. A song that when she wrote, ' I only needed to hear a line or two before the tears started to fall', she could not have described it better. Just take a read and a listen:

http://www.team-ewan.com/2011/08/i-want-to-give-you-something.html

Even her post made me cry. How could you not when you hear this song and their stories?

So it was with bc of this song, so close to our one year that I finally got around to this post. These songs both rip at my heart and heal it. A gentle reminder of how far we have come and a rude nudge to how much more fighting we have to muscle up for. Most days I am ready. Today just was not one of those days. Running on empty.

Of course, I am sure there are other songs that tugged at me this past year but these are the highlights of emotional rollercoasters. Again, thanks for tagging along, singing along (and crying along).

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!

one

The party that wasn't....

Thank you Sara Lee, for the easy-make train cake!

Angry Birds Cake for Triston! Thank you, Uncle Tommy!

We had a slingshot and all!

The Birthday Boy! Our tradition since Triston's first -frosting noses!

Grayson and his train cake. It was daddy's idea to carve out the frieght cars and fill em up. We then filled them up w each boys' fav. Triston-gummie candies, Grayson-chocolate for Choco, and Caden-cheerios and M&Ms.

I bought these at the dollar spot at Target. Filled em up with train whistles, Thomas stickers, bag of microwave popcorn and mini paintbrush art kits. I had intended for the kids to have another special treat. Empty Ice cream cones filled with circus peanuts (remember that candy?!) and animal crackers. How cute that would have been to see them walking around a handy travel snack.

Balloons for the Caden-his fav!

As you can see, the bounce house we purchased (CHEAP on amazon and at least we knew where it had been) was a success!! Could you have imagined us sanitizing some rental? This way it is ours forever and since the "party" we have had it out 4 other times bc it is that easy to set up n take down).

I also had face painting and carnival game stations planned.

Why did it not all occur?! DAMN FLOOD! The party was scheduled for July 23rd. I was so excited. The kids were excited. We had a whole yr to celebrate. Caden turning one. Grayson's diagnosis anniversary. Triston heading off to Kindergarten and surviving a topsy turvy kinda yr.

I went to bed the evening prior hoping the power would turn back on at least by 11 am before guests arrived. I had no idea I had to worry about water. We have never had any kind of seapage or flooding. It never crossed my mind this is what we would wake to. Charito walked down to the basement to check email that morning and water squished between his toes. The entire carpet in the basement was soaked. The laundry room and furnace room had puddles of water. We just looked at each other like YOU HAVE GOT TO BE KIDDING ME!

Needless to say, we had no idea how much work we had ahead of us and cancelled the party. We had to get that carpet out fast. Bleach what could be saved fast. Toss anything that could make G sick fast. Before we knew it we had friends and family showing up to help without us even asking. We are so blessed! We had all the necessary work done by 4 pm.

While the men tore up carpet, I disinfected and tossed. Oh my the amount of toys and games was nauseating. Games and supplies I had bought for the party resting at the bottom of the stairs drenched.

To top it off I couldn't cancel any of the catered food. I ordered from 3 different places-Filipino, Italiand and fried chicken. It was all to arrive as planned. As frustrating as it was, I looked at it this way-at least I could feed my clean up crew. But I can't begin to tell you how much I had leftover. Luckily people were not turning down doggy bags and my freezer was hungry. We are still working on the leftovers!

The saddest part of this day was my own disappointment. Here I had the energy and healthy-enough Grayson to provide our boys a party they deserved and it was not what I had portrayed it to be. Now believe me, it was not going to be the lush type of party you see Tori Spelling creating for her kids but I had a vision. A Circus Train theme with all the boys' favs. The theme took no thought. Charito and I joke too often that our life feels like a circus. The thought, planning and details I put into it were awesome. I was impressed with myself. I actually did not cry over the whole thing til days later.

But in the big picture and even the day of, Charito and I just shrugged the water damage off. We got into clean up mode and pressed on. We knew what needed to be done to keep the house safe from respiratory issues. And with the addition of friends and family to our rescue (as always!) it made it all a little more tolerable. And gave us time to spend an entire day together catching up. As the women entertained my children I knew how lucky we were. There was no standing water. The carpet acted as an expensive sponge. Yeah we lost bags and bags full of electronics, games, toys, puzzles, etc but not our home. This was not like those families who suffered in Joplin. WE were lucky. SOOOO, the party actually did happen in a sense. I fed my clean up crew of 14 versus 50. We ate 3 cakes (more so for the kids and to make room in my fridge for the leftovers). We blew up the bounce house and let the kids enjoy the day. As far as my kids knew THIS WAS the party I had planned. The number of heads in our yard doesnt matter to them. There was a cake and a surprise bounce house! One cake for each of them! I gave favor buckets to the few kids who tagged along for the cleanup. I have tons leftover. A reminder of what could have been. It would have been nice to see some of my family but the fact was most of them were unable to attend anyway. I know we are in their hearts either way. It would have been nice to see some of Charito's family but I know they are always thinking of us. We have many thinking of us, celebrating this year we have had. I know that. Thank you everyone for all you do. Here's to another year (and maybe a lush party next year)!

How helpful...

of Triston to serve Grayson breakfast one morning! They can thank Caden's need for a diaper change and mommy's lack of multiplicity for this one!

A piece of heaven

At Quiet Heroes, SuperSibs! was selling these adorable Cuddle Clouds. I passed by the table thinking how cute they were. Then I saw people nabbing them up like crazy. They were going fast and by the end of "shopping" for raffle items I decided I had to have em. The cost went straight to SuperSibs! so it was WELL worth it! I figured I would buy one of each and let the boys choose which one they wanted. Triston chose JOY and Grayson chose FAITH. Seems fitting don't it?
They have slept w them ever since. My cuddle bugs with their cuddle clouds. Love!

A great Monday (finally!)

Monday, June 13th

Today marks 45 weeks into treatment.

I am super tired today so this post is gonna sound all discombobulated...

We were scheduled for spinal today so Grayson was cut off of all food n liquids late last night and all this morning. I pictured a horrendous morning seeing as it feels like mos ago we had to do this ritual. It was only the first week of April but still. I lost the hang of it all lately.

Grayson was great about it tho. Actually, he was so cool about it that he had me worried all morning. He was TOO chill but still his goofy self-all from the comfy spot of the couch. It was a little wierd. Not that I wanted a tantrum but I got no refusals and that is odd for a non-stop eating machine lately. Just got us wondering since he was chill and halted that enormous appetite of his after 2 pm yesterday. So the kid had nothing in his belly since 7 pm last night. Then before he went to bed he was given a full tab dose of Mercaptopurine. He slept well and was in a good mood this morning.

So, even though I was wondering if anything was brewing in him we took off to clinic in good spirits. I kept trying to steal kisses from Triston and Caden while Grayson was the one telling me to "let's go see dahcter Dell!".

When we arrived he actually wanted to be carried. Odd again. He usually is trotting along in full speed, happy to be out in the world even if it is LGH world. He is not a picky guy!

We walked into clinic to a few surprises! We had Dr. Goodell again! Princess Jennie is back! And Aerum was in! She didn't think she would be in clinic last we spoke but wallah, there she was peeking around the corner. And then Jennie ran to G for great big hugs! It was SO great to have her back. And the pics of her daughter are gorgeous! When G n I slipped away to go pee before "poke on the back" (spinal) began we returned to Areum knowing our boy! The portable tv was set up w Thomas ready to go. She is THAT good!

By the time G was accessed and draws were complete he fell asleep in my lap. He was out to the point we didnt use as much sedative as usual bc he was on his own auto-sedate mode. He was never aware of beginning or completion he was that tired. It was such a quickie spinal w/out our usual roles of reading books and telling jokes ( injection into the spinal fluid of Methotrexate and draw of spinal fluid). Goodell and I even snuck in a nice conversation together. I have really enjoyed the last few weeks with him. I love Kwon but again, they each are perfect in their own ways. And these past few weeks I have needed Goodell's humor, sarcasm and easy breezy explanations of things. It has helped make that tornado feeling a little less dizzying.

When it came to get him waking for final vitals and check for stability he was hard to wake. By then his counts came in and we had our mystery culprit-low glucose. Not dangerously low but enough to not be aroused easily. I couldnt even shake him awake w tickles. The plan was to try and get some juice into him but we were afraid he'd choke on it. So they hooked him up to some dextrose via port and within 15 minutes he was fluttering those eyelashes asking for food. His low blood sugar may have accounted for the crabbies and chill mood the second half of yesterday-who knows? Could have also been the week catching up to him? Who the hell knows anymore!

Regardless, he woke perky. He was goofy, thirsty and hungry. He asked for all of his gals while we got ready to head out. Areum helped him pick a toy from the treasure chest. He was feeling great! I was feeling great! It was so wonderful to have a back to normal clinic visit w out the latest fever, rash, pox and virus talk. It was to the schedule, just the way I like it.

Counts were great!

Hgb rose after leaving the hospital a 12 days ago at a 7.4 = today 9.4. All on its own w out a transfusion

WBC 3.95

Platelets 357

ANC 1, 960

And we are back to our normal everyday 100% medication schedule! I know it sounds silly to be excited over such a thing but it's anything to get us closer to the end.

Prednisone 2x day for the next 5 days

Mercaptopurine every night (1/2 tab M-R, 1 tab F, Sat, Sun)

Bactrim M and T

Methotrexate (oral) every Monday

Grayson weighed in at 22.5 pounds and 33 3/4 inches. He has grown half an inch since late 2010.

He was in such a good mood after downing a whole apple juice and some yogurt raisins that we decided to venture out after clinic. It was almost 1 pm and we dropped by Trader Joes. I asked him if he wanted to go shopping and he squeeled YES. We had fun. I was on a mission to find healthier items to boost this boy up. As long as he has been eating almost anything in front of him and steroids were back on the menu this week I had the green light. I had a great discussion w Barb the dietician about some options and Trader Joes was my inspiration. I found some awesome goodies! Including the Bob's Red Mill Whole Ground Flax Seed. I am about to get sneaky!

It was all fun and games until I smelled somthing. I noticed G leaning forward in the cart. "G are you going poop?" I asked. "No...I mean yes" he responded. WHAT?! Stupid me forgetting all about the dangers of post spinal diarrhea! I had vomit on the brain not diarrhea. We raced to the bathroom, cleaned him up and got home as soon possible. He has been going every 2 hours since but it is no longer a watery consistency. And now that I think about it, he had some loose stools yesterday, too.

He remains in a great mood even now (7:30 pm). We played in the yard before dinner. It was a nice end to a hectic day.

Triston was sent to bed early for bad decision-making (like locking me out of the house and thankfully letting me in as soon as I yelled at him to do so). Caden bumped his lip on the sidewalk trying to chase Triston. He also mastered entering and exiting the fort toy on two feet all by himself and absolutely loves the slide! G continued to give me some mini heart attacks while insisting on climbing the walls of the fort (and gracefully I might add). It brought back of memories of him first accomplishing that skill weeks before diagnosis.

It was a happy Monday. A happy Chemo Monday. How many people can say that?!