hating cancer...again

While everyone else is off on mini road trips or far off adventures we are here at home. I was okay with that idea on Friday. It was the end of a VERY busy week at work that had drained any energy I had stored up to put a smile on my face while we hosted over 100 families at our annual preschool event all over campus. I put that smile on and truly enjoyed all the laughter and smiles from each and every child, all the work we put in since January paid off as usual, to the point of tears. But as soon as I entered my car to head home for a long weekend I began to cry again ( for some reason they flowed that morning, too. I blamed it on overwhelming anxieties and stress from the weeks prior and coming up). I was feeling empty and overwhelmed. And yet I had so much to be excited for this weekend. My parents were FINALLY coming home FOR GOOD!  And I had a long weekend to snuggle with my boys and suck up every and any little moment that I have grown to treasure in all its glory since we began this journey. And Triston graduates from K in a few days. He is BEYOND excited and we are, too. And yet so much still needed to be done. But whatever needed to be done I was looking forward to a lazy and family chill weekend.

But then all of a sudden out of the blue Grayson developed a fever late yesterday (May 26). We had agreed to keep it a chill weekend and avoid crowds bc G had a near fever type episode last Sunday and into Monday May 20 and 21). What worried us more was how lethargic and pale he had become in a matter of hours. Unexplained bloody noses occurred. Things that had not happened in over a year. Our clinic visit that Monday morning told us his counts were great regardless of how he presented.We were to monitor and call if things got worst. By dinner time Monday he was his old self acting as if the crazy worried thoughts his parents had loomed over the past 24 hours had never been a part of our week. Cancer can be frustrating that way. Not G's fault at all. But as we have learned cancer plays games with you. It can make you upset to interrupt the little plans you had in mind or even the no plans. It doesnt matter. The fear of a ER visit  and 5-7 day hospital stay as you wait to see if there will be more symptoms or an increased fever ruin your entire mood. Charito and I get on edge and stress out even though we are trying to hold it together and calm in front of the kids. So we hide it as best we can, playing with the kids, rushing to get through dinner so that we can maybe have a meal together in case its the last for a few days during a hospital stay, cuddling, laughing and dancing. Trying to soak up the moments as best we can trying to think positively when inside we want to scream. And it didnt help that as my week ended I was dealing with other cancer news from friends or running errands for friends who are about to start or complete their own treatment plans. I may be doing these tasks for shitty cancer reasons at the core but inevitable it is my own therapy as well. Helping others and being there for them during their own fights makes me feel not so weak, like an invalid at times. It is the best distraction in the world, not to mention fills my heart to do for someone else. Pay it forward so to speak.

So this out of blue fever continued for a few hours. He became whiney and did not want to be touched. After 2 hours I gave him Tylenol and decided if that did not bring it down I would call oncs and get advice. I ran to Jewel to get him gatorade and cheetos and anything he would be willing to eat. He wanted nothing to do with any parental request at this point and I was going to try anything-I even whipped out the fruit snacks (aka rot your teeth candy disguised as fruit otherwise forbidden in our home unless used as a bribery item). When I returned home there he  was in the basement playing with trains with some perk in his step. Def not the child I left behind as I braved Jewel on such a big holiday weekend. That was good news but of course Charito and I could not relax. We anticipated what the night held.

He slept the whole night through with no fevers and woke without a fever as well. He has been somewhat irritable yet with some pep in his step so far today. But we are not letting our guard down. His lips seem slightly pale. His mood is pretty good though. He asked if he could wear his super hero cape that Areum gave him and who would tell him no. And that prompted me to make our own DIY capes for Triston and Caden. That is how I will spend our day---letting my lil superheros tote around, dream big while Charito and I and wait....

and in case you were wondering...no, I did not get to see my family today. Poop on you, cancer.

pain

I don't want a lot of this

My clown

G has been feeling really great lately! No big plans on this Saturday  other than participating in the "little things" like Target as a whole family. G thought this was pretty amusing today as we finally made it toward checkout ( I swear them kids wiggle something out of us in that damn toy aisle almost every time! At least they understand their numerals and today we explained it had to be under $5!). I laughed out loud, literally, as that boy has never seen them that big in our home! I snapped the pic right away. I love his sense of humor. He ran to them, called to me and yelled "Hey, mom look at these. They're funny!" Ha! His head is as big as one of the cups!

Yes, buddy, yes they are-especially when your mama cannot speak from experience!
I swear , when they get older one of them is undoubtedly going to ask "How the hell did you feed us with those?!"

More March hospital stay pics

 fishing for dolphins (yup, he caught mama a dolphin!)

 a volunteer brought him a blanket and pillow pet. Was one of those wierd signs, even though from a complete stranger who knows nothing of him, he received a train blanket with other characters on the reverse.

 rememeber way back when (around diagnosis time) when at 22 mos he would let someone know he liked them by playfully giving them a bee sting? Whenever I see a bee I think of G, then I run!

Loosening the cancer leash

A few days ago Grayson had his first playdate AWAY from home! This picture says it all. That pretty little girl is M and she is the sweetest, most well-behaved little girl. Grayson sees her often when we pick up Triston from school. She is the sib of one of Ts classmates. After a few discussions over a yr ago with M's parents we realized T and M's bro were in the same baby classes at Gymboree at 1 yrs old. Small world. I knew they looked familiar when we first entered prek. Go to find out we have tons in common and they are absolutely the best family to get to know. You know the type of fellow mom you don't have to think of things to talk about bc the conversations just flow right into each other? That is the kind of friend I have in Ms mom. And to boot-M and G will be in the same class next year! G adores her and asks me everyday if he can go back to her house. And from what I hear the feeling is mutual.

Leaving him at their home was not as hard as I thought it would be.It was actually a bit surreal. But with baby steps we are slowly preparing ourselves for our "fragile one" to be apart from us for school  in the fall.  I completely trust Ms mom. She is as detail-oriented, worry wart and watchful as I am and she gets me and Gs needs. She kept me up to date w texts while Caden and I had our own alone time. I couldnt have asked for a better situation!

There are so many more play dates in their future! How lucky is G?!

And while G and M played Caden and I spent some time together.
I fixed myself up with some Starbux and grocery shopped in slow motion. Not my typical run in and out pace that I have become so used to these days. I shopped like the days when it was just baby Triston in the cart. Pointing out all the learning opportunities a grocery store has to offer. Caden does not get much of this and I loved that we could take advantage of it. By the way, I have such a sweet obervant boy!

 He picked out the flowers and loved smelling them. A few mos ago he wouldnt even go near flowers, something about them scared him.

Insisted on Doritos and luved on them like crazy!
It was a wonderful day! Thank you, Ms mom! Especially for putting me at ease!

Wishes

I won't lie. I have been in a nasty funk for a while now. March's hospital visits did not help one bit!

It's just that in so many ways I see other people's lives moving forward in positive and exciting directions ( and I am very happy for them bc they SO deserve it) and we feel stagnant all too often. My usual disclaimer hasnt changed....I still cherish every moment I have w my boys and I know there are families suffering harsher paths than us but some days (or months) are harder than others for me. To each his own.

I have 3 big wishes:
1. A cure for cancer. Not much to ask in my opinion!

• Childhood cancer is the number one disease killer in children.
• There are 15 children diagnosed with cancer for every one child diagnosed with pediatric AIDS. Yet, the U.S. invests approximately $595,000 for research per victim of pediatric AIDS and only $20,000 for each victim of childhood cancer.
• The National Cancer Institute's (NCI) federal budget was $4.6 billion. Of that, breast cancer received 12%, prostate cancer received 7%, and all 12 major groups of pediatric cancers combined received less than 3%.
• The American Cancer spends less than 70 cents of each 100 dollars raised on childhood cancer.
• Cancer kills more children than any other disease, more than Asthma, Cystic Fibrosis, Diabetes and Pediatric AIDS combined.
• Sadly, over 2,300 children with cancer die each year.
• Every school day 46 children are diagnosed.
• 1 in 330 children will have the disease by age 20.
• Cancers in very young children are highly aggressive and behave unlike malignant diseases at other times in life.

The Children in our lives deserve more! They ARE our future.


2. To be a stay at home mom one day. This IS the best thing I am good at. And as the years pass by I dislike my job more and more. The many hats I wear is wearing me down. Some days that Superwoman feeling doesn't even hit surface and I am just angry at the world for all that I had to accomplish in one day. Other days I amaze even myself. Ironic, huh, how there are moms out there who would give anything to work instead of being home?! We all have our niche. But in the big picture I do know that my job is a means to end as C says.We wouldn't have what we do or be able to enroll the kids in the "extras" without my job. AND thanks to number one I NEED to work for the insurance to get us through the countless years of cancer maintenance ahead.  The other need to work leads to number 3!

3. A bigger home. A home that signifies a new chapter, new beginning in our life. Putting the rollercoaster past behind us. A cause for excitement for the kids as well as C and I. A play room for the kids, my own creation studio, space to be all around and not on top of each other. Again, I know there are people who JUST want a home instead of a condo or apt. We all have our wish lists dont we?
But until then I finally had the time to do some sprucing up to improve my mood of our current home (thank you Spring Break!). Not to mention a few crafts the for the kids and I. Who doesnt love Michaels craft store!

Whenever I see a home I like on the exterior I picture that episode from Jon and Kate plus 8 where they moved into that overly expansive home and the first time the kids see it they run around like with excitement like its an amusement park. I want that overflowing feeling for my kids and even C and I. That, this is gonna be great, feeling. One day.

Until then....spring  break allowed me to accomplish a few things. Crazy how I was a true beast the week leading up to it. I know I yelled from the time we got home from school and the time they went to bed. I just couldnt control my stress. I took it out on the wrong people. I was feeling so deflated that week.

But WOW what a break will do. Saturday the first day of break I spent cleaning all day. I finally got around to hiring a cleaning lady to help me out. She tackled the ugly stuff while I dusted and organized. 12 hours later the house was cleaner than it has been in 3 mos.  By Sunday morning I started it out right.Yoga, crafts and lists of things I have been meaning to get to. By Monday I had already accomplished so much! The rest of my days so far have been play dates and snuggles.
But I made the time to spruce up the home we do have and enjoy myself in the little things.
This wall project has been in my head for over two yrs when my mom bought me the overpriced wall paper at a steal (gotta love target employee discounts).

BEFORE:

This has been above our bed since we moved in.
I took the wallpaper and covered blank canvases. These are so cheap from Michaels and love how versatile they are. I have even given the kids blank ones to use as free expression and produce our own gallery art pieces. Luv it.
Then I found this rub-on quote months ago and fell in love.
  Real Love Stories never have endings. 
I stood in the middle of the aisle reading it and almost cried. At a time when things were once again stressful I was reminded of the center of my calm. My hubby. Our love brought us here and will keep us here, going at it as long as God intends. And for me that is forever.

My little helper

But when the blue wallpapered canvases faded into the wall I needed another plan. Once again the center came to my mind-our love brought us our kiddos. Who doesnt like going to bed with a reminder of those beautiful faces created by only you?!

The blue canvases looked better against my green walls anyway!

The 3 kids got into some of the art using their fingerprints to create cherry blossom trees. Triston wanted to add Japanese characters to it so he looked up the meaning for peace and future and drew them on. 

Then we snuck in one more craft for the kids. I have been wanting a seasonal wreath for awhile now and finally did it.

I placed the hot glue gun on each egg and they put them on the wreath. The flowery garden didnt seem to be enuf for me so I added lilac ribbon. They love that they helped and it really pops on the doorway!

 Truffala tree

Rainbow art ( G called it his rollercoaster of rainbows)

The rest of my break I intend to do some more blogging, relax, shop, yoga, spa day, hair day, some time with family and be a better mom in a better mood. I will eventually get to the homework in my work bag....

March AGAIN update

PCR came back negative. Cultures inconclusive at this time. Appears to be a virus strain he was hit with. But he is all better. Dont know what counts are yet. Going home today sometime. Still unsure of discharge directions.

But last night was typical cabin fever G when he is feeling better and napped for a long time during the day and becomes so overtired at night. One minute we are bantering over no TV bc he was screaming at me to play a loud game at midnight and the next hes crying to cuddle with him and have a snack. So we cuddled and at goldfish and salad and said "cheers" with our styrofoam cups of cherry pepsi. Then he nestled in my arms and kept telling me that I am 'the best mom I ever have' and how much he loves me. That kid gets me every time!!!

Caden has been busy wreaking havoc on the house. Doing some potty while I was gone which I love. Climbing on the dining room table to get M&Ms. Refusing to stay in his crib unless he absolutely exhausted. Cant wait to see what I come home to!

T is home from school again today. I just wanted one more day for him so that he didnt infect anyone. Hes had no symotoms since Sunday. But he did break my heart a bit last night. He called me near midnight crying. He had a nightmare that I was in a battle of some sort and instead of finishing or after the battle (hard to hear him) I went far away. I assured him that I was so close to him and reminded him of our route to the hospital and how close it is. I told him how wonderful it is we get to do facetime on the phone, share pics and texts and talk. He calmed down. But it was clear the dream portrayed how much he is missing me. I cant wait to see that boy today and give him a tight squeeze lasting up to five minutes or more and hand him a shamrock shake. We have been seeing the "I love you, I hate you" commercial for weeks now and havent indulged yet. I hope we get out of here early enough to get most of the day w my boys before I have to prep for work mode returning tomorrow.

 Ugh. I hate this.