bday party update!

No more mommy tears! Called up Exploratorium and connected with the same wonderful person I spoke with last year! We are set. Party booked! She remembered us, Grayson and asked how his health was. There continues to be great people in this world and I am lucky enough to meet them!

What changed my mind? Triston's reaction when I asked his opinion. I simply said, "T, you still want to do a Lego theme, right? (pause for his big smile and a shrieked YES) So, what do you think about having your party at Exploratorium like last year?" His response, "Do they still let you climb near the ceiling?" Yes buddy, they do. More shrieking YES's!

Crazy how simple it seems by 4:30 pm!

Frustrated

So I promised myself (and quietly to Triston) that today would be the day I would book his bday party. He has been talking about Jump!Zone so I was gonna go for it. I figured if I at least mentioned Grayson's condition maybe they could put in the notes not to book us alongside another party. If they can pull it off great, if not at least it was worth mentioning. Who am I to stop a business from making money? Not my intention at all.

But as I am talking to the lady I realize that there is the potential to be booked alongside two other parties and overlap at times. That is sooooo many people to expose G to. Not to mention that open play hours take place then too. My best options are a 9 am party on a Saturday or Sunday. I can't do that to families or ourselves. Not fair.

So as I hung up feeling frustrated I went to my email to distract myself from crying. I thought back to how difficult this whole concept of planning a happy day for my kids is thanks to leukemia.
Then I found this in my inbox:

http://www.youtube.com/watch?v=V_jIyFxyshE&utm_medium=email&utm_source=ExactTarget&utm_campaign=LTN+-+11+-+Researchers&utm_content=dolfinr@hotmail.com


I cried. I am not alone. I am not the only mom who has to deal with these same fears and frustrations. And honestly, there are TOO many of us out there.

Not fair.

My best option right now is to see if T is willing to have his party at Exploritorium again. They were abosolutely, amazingly understanding and cooperative WITHOUT my even asking them to be. They gave from their hearts before I could even say no. It is worth a try. I expressed my appreciation in several ways after the party last December and I am more than willing to give my money to a place that gets it. We shall see.

Sincerely,
Tired, frustrated with leukemia mommy

The sweetie I know and LOVE to pieces

He has been super attached to Shell Puppy lately...

ohhhhhhh, I love him sooooooooooo much! that smile of his (all 100 versions of it)! That's my Sushi alright!

October visit part 2

As I try to do with these montly visits, here is the next morning update.

As tired as you think G would have been last night he did not fall asleep until almost 9 pm. There he was with his own version of "I'm not touching you!" in our bed next to Triston. All T wanted to do was sleep and G kept egging him on. Hard for me not to laugh out loud during it. I had to threaten G he would end up in his room by himself if he kept it up. I had such a nice day yesterday (still sounds ironic, huh? ) I bent the rules and let the boys fall asleep in our bed while daddy put his super hero computer-fixer cape on and helped out dear friends. We read a new book ( I spent $85 on a scholastic book order thru T's school and pulled out one of the goodies, saving the rest for xmas gifts), The Leaves Are Falling. It was perfect seeing as on our way home T observed all the trees that changed colors since Friday's drive home from school. We talked about how Autumn is our fav season (mine for so many reasons). I love the look on my kids faces when I yank out a new book!

We also took a peek at two new tv stations we discovered over the weekend. SMILE and LAKESHORE. Both have a nice mix of G and T aged shows, some with religious tones (simple cartoons intermixed with real-life stories with a similar lesson) and others focusing on character education. I am still researching some of the shows but overall pleased. Nice to have other options from Cartoon Network's fighting scenes and adult-undertones. Can you tell I am still struggling with this let him be a 6 yr old junk? I just feel like so many programs jump from age 4 to 7 n 8 yr olds. Not much in-between other than Phineas n Ferb , Fetch w Ruff Ruffman and Electric Company. Thank goodness T is so into non-fiction shows like National Geographic, Food Network, Animal Planet and anything science-related. He loves his gal, Giada. And G will watch anything T is into to!

This morning G's need to rush to the bathroom woke him at 6 am. I felt like it was 4 am I was so tired. I ran him to the bathroom and god bless his pee pee soul he went right back to sleep. That beautiful boy slept til 9 am! He woke in the best mood! He has been so lovey dovey!

Caden slept til 7 am and ate  good breakfast. He had the whole liv room to  himself for a few hours  and he was loving all my attention. I loved it, too. Rarely do I get alone time with him (unless he's teething in the mid of the nite) and it is such a reminder of how precious he is. So inquisitive. Taking all he has observed in the past year and putting it into action. Adorable. We even snuck in some art drawings before G woke. As G got his morning going I then put C down for his morning nap. Now G has finished his breakfast, meds and is playing in the basement with his trains.

As for T, he was another one who woke in the best mood. I love how that kid handles his own morning routine. He toilets, brushes his teeth, dresses and prepares his own breakfast. By the time I get downstairs all I have left to do is pour his milk (or toast or waffle if he wanted something other than yogurt and fiber bar).  I love how independent he has always been! My biggest boy!

As for meds this month-the usuals. We had no diarrhea mishaps yesterday (Vincristine side effect). Lucky! I will never forget August's diarrhea incident in the middle of Trader Joe's. No repeats of that please. I have not been back since!

He received his dose of Methotrexate intrathecally (via spinal injection) yesterday and will take weekly doses orally the remainder of the month. He started another round of steroids last night so we should see the ravenous side of him kick in this evening. He will continue those til Friday 2x a day.

But the real point of this post was not only to let you know how he's doing the past 24 hours but to share with you a reminder. I was blessed to read this post this morning.
http://www.team-ewan.com/2011/10/october-3-4.html
 A reminder that not only was I having a great 24 hours just like G, but I am forever blessed to have my 3 boys to love on each morning. Look for the blessings in your day and hold onto them a little tighter. I know I do. I don't mind the reminders along the way. I hope you don't either. Happy Tuesday!

October clinic visit

Gonna make this one quick bc I am exhausted. Been a very happy but tiring day.

Counts:
Hgb: 8.2 dropped from last month but still in the ok range
Platelets: 491
WBC: 3.17
ANC: 2.34

Good counts!

We avoided the hypoglycemic issues by giving him a bit of breakfast this morning. 7 am was his cutoff per nurse request. Yeah, well the lazy butt did not get his bones out of bed til after 7 so by 7:30 I smashed half a juice box and about 10 goldfish down this throat. He woke in a good mood and that mood has remained all day long. I love that smile of his. He was happy to see all of his girls this morning!

He entertained us all, as usual. Areum brought him the mobile tv and he watched Curious George and Thomas. We talked about the Polar Express movie during his spinal procedure. He had Dr. Kwon asking questions and smirking the whole time. I know it sounds insane to place these type of words into such a place and procedure but really-I love clinic, he loves clinic and it remains our happy place all considering. G is so comfortable there and it is his time to soak in all the attention and take care of his business. He adores everyone there and vice versa. He continues to amaze me! I was so proud of him after his spinal. Even as Dr Kwon let him know he was all done with pokes G tried his best to look in his direction (which was difficult bc he has to lie on his side during the procedure and remain there for an additional 30 min afterward) and then said "Thank you, Dahter Kwon". Luv it!

 Here he is saying CHEESE right after the procedure! See his "Buzz Lightyear" (SAT monitor) on his finger.

He ate fruit snacks during our 30 minute lie still time (see the things he gets spoiled with at clinic! we hardly ever touch those cavity ridden things at home!) and read books. Afterward he chose a Thomas magna doodle from the treasure chest as his poke prize. Areum lined up all the Thomas stuff for him to choose from. I remember last time G chose a game that was way beyond him but declared he wanted to play it with Triston. He has his big bro on his mind so often. Too sweet!

We rushed thru the Mcds drive thru for our routine chemo meal and headed home. I then headed over to Triston's school to be a Mystery Reader. T had no idea I was coming (that's the point!). I had to ask him last week which were his favorite books lately (never the same really, changes month by month bc we read so many). He chose Duck Soup and Fly High, Fly Guy. I lied and told him I needed ideas for my class so as not to give it away. Can I say that no matter how tired I was after chemo the look on my boy's face when I walked in his classroom was priceless. It truly was an expression I have never seen on him before. He was literally ecstatic, so much that he turned red, and not from embarrassment. Two great huge smiles from my two boys to make my entire day!! What a chemo day to remember!

We go back October 31st for Vincristine and counts.

Oh and as for the gunky cough----it was agreed that it is asthma related and his lungs sound perfectly clear. I will keep up on the nebs and asthma meds and continue to monitor.
Whew! What a day!

Surviving....

the way it should be.

On Tuesday, Sept. 27th Grayson and I had the privilege to attend a special ceremony.
We are featured in the last photo of 5.

http://www.dailyherald.com/article/20110928/news/709289941/#

http://www.dailyherald.com/article/20110928/news/709289941/#

There we were sitting with the president of Lutheran General Hospital and Hyundai , a legislative Representative, the wondrous Dr. Kwon, many other well-suited men and women and 3 other families at different stages of their cancer journey ( one of which was recently diagnosed in July which brought back many memories for me). It truly was one of those moments I had to pause time for. I did so several times during various speeches. Here we were at the VERY first stage of development for a survivorship clinic. A clinic G would be a part of. A clinic G would need. Surreal. And even a bit painful.The bittersweet feeling of our presence haunted me once again. It aches to be reminded we are family that needs this and yet we are thrilled to know such an opportunity will be at our fingertips.

 Dr Kwon during his acceptance speech

 G and Dr Kwon

(at one point I caught Dr Kwon quickly smooch G on the cheek. I melted. G lit up. To see that side of Kwon was priceless. We never doubted it was there but as I have described before, Kwon is the serious straight to the point one of that Dr ying-yang. That moment and the time G gave Dell a great big bear hug-the kind you give your grampa- are etched in my mind forever. These two men are business when they need to be but deep down they love these kids. We are so lucky. G is so lucky.)

 Princess Jennie

Grayson was asked for an imprint of his hand on canvas. He was so excited to paint! He was also so well-behaved during the business portions of the event. His smile was pretty contagious! His handprint will be lifted from canvas and placed on a Hyundai Hope on Wheels vehicle ( a vehicle literally covered with hundreds of handprints of critically-ill children). Needless to say, there were many times I held back tears. This was real. To think that I will one day, years down the road, take him to see that canvas handprint of a tiny 2 yr old. To know that at any point in his life he can walk the halls of LGH and visualize what he was a part of puts my mommy heart at ease. I swear-the footsteps my mother, myself and Grayson have taken in that hospital have come full circle in more ways I can count. I am blessed.

All this was being done for the right reasons-for the patients. To continue to support them long after the treatment has ended. The list of long-term effects is hard to swallow ( you've read of my spiel on this before). The pain and fight does not end at the last dose of chemo. Several people have entered my life since G's diagnosis who affirm this. I call that list my dessert course. Right now we are stuffing ourselves with the main entrees. Dessert is OT (off treatment), expect it is not the kind of dessert you want. For me it is flan- I HATE flan. I will worry about my flan in 2+years.

But the big picture is this----surviving the fight and all that comes with it (before, during and after). And with a survivors clinic the plethora of resources are right there for us, for him, for so many other sufferers. Thank you Hyundai, thank you supporters and thank you LGH for inviting us to be a part of history. Grayson will undoubtedly know his story and those surrounding him during our journey.

I received news of this video about a week later...
http://www.youtube.com/watch?v=rbmfcmEtHmA

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.