We will post more later but we wanted you to know…
Just a little update to let you know that Jack did really well yesterday with his scans. We got to the hospital and he was in great spirits. We were able to deliver some of our “Stronger Than Cancer” shirts to some of the PCH employees since we had a little bit of time on our hands. Walking back in to radiology used to feel like you were walking into the hallways of doom because it’s simply terrifying but now, even though we are still nervous about it all, we walk back there and we are greeted by our second family. The nuclear med team, the CT team, nurse Angela, and of course Dr Maze are all there waiting for us and with open arms. They care so much about Jack and our family and knowing that they will take such amazing care of him while he is under, makes a huge difference.
Jack fell asleep well, with a smile on his face but with a very strong grip on to Zac’s shirt. We gave him kisses and ran up to the oncology floor to deliver some more shirts while he was asleep. The scans didn’t take any longer than needed and we were back in recovery in about 1 1/2 hours. Jack was sound asleep and after about 20 minutes, he woke up well, ate his popsicle, and we headed home….with a small stop at Toys R Us of course! Once we were home he had another snack and out he went to play in the backyard….all was back to normal again!
Now we sit and wait for Dr Eshun to call. We know we won’t know full details until Tuesday but I am really hoping that we get some preliminary results today at some point. My birthday is on Saturday and the only thing I want is for Jack’s scans to be clear and for him to be cancer free forever.
Well here were are…already facing another day of scans. We go in at 9:30 with a CT at 10:30 and then the MIBG at 11. Please pray that there is nothing in the area where they removed that mass and that nothing lights up on the MIBG scan. Of course we are nervous, because that is what scans do to you, but we are confident that Jack will be ok and we will get the all clear from the doctor. Once we get the good news, Jack won’t have to have scans for another 6 months and then that will be 2 1/2 years post treatment! That’s amazing!!
We send out another load of shirts the other day and we thought it would be fun to ask you all…literally 100′s and 100′s of you…to send us a pic of you wearing your shirt today in support of Jack and all the other fighters out there. So, if you can, wear your shirt today and Stand Up for Jack. Post your pic on Facebook or email it to me…whatever is best for you!
Thank you, once again, for all of your love and support. We couldn’t do this without all of you!!!
With Jack turning 6 this weekend and scans coming up next week, I find myself looking at the moments that changed our lives forever and the every day life moments that I don’t ever want to miss out on. (And yes, for some reason when it comes up to times like these I think that I know everything and feel that I need to stand on a soap box and tell you all, but half of the time I am just rambling on so here we go….)
Jack turning 6 is, of course, a huge “Take THAT cancer” moment for us. I think we feel that more this time because we feel like we could have faced a relapse last month and knowing that Jack sailed through another surgery with such courage and strength makes us want to celebrate another wonderful year of life even more. It makes you enjoy those moments of laughter, fun, accomplishments, success, and love even that much more. I really want this years celebration with Jack to focus on just how grateful we are for having him…for having each other.
There have been a few times in this last week that I wanted to grab some people by the neck and tell them to wake up and realize what they are missing out on and how grateful they should be. Last week at Jack’s baseball game, before the game started, the kids were out practicing catching, throwing, and hitting the ball. I was standing there and watching Jack, and the other kids, while a father sat next to me in his folding chair and gave all of his attention to his phone. He wasn’t on a phone call, but he was playing a game. He must have downloaded the latest app on his iPhone and he was totally enthralled with it. He had one son who was sitting under another folding chair with his face plugged into his electronic device while his other son was out there busting his little butt playing ball. Every time he hit the ball, threw the ball, or caught the ball he would turn around and look at his dad who had no idea that the world even existed around him. All this little boy wanted was for his dad to watch what he was doing and maybe throw out a “Good job” every now and again. After about 10 minutes or so, the man pealed his eyes off his phone to watch his son for a second. The boy happened to miss a ball that was thrown at him when he glanced up and the dad stood up and yelled, “oh come on! Pay attention would you!” Ummmmm…a little bit of a hypocrite don’t you think sir. He then continued on with his annoying game and glanced up again a few minutes later when Jack was practicing hitting. Jack swung and missed the ball…the man chuckled. Yup, chuckled. The inside of me wanted to smack him upside the head but I just sat there and kept watching the kids and letting Jack know that I was watching, not to pay attention to anyone else, and just to keep trying.
A couple of days later we were driving home and passed the park by our house. There were 4 kids out on the playground playing (they looked to all be related) and parked on the curb, was their dad. In the car, with the air on, playing on his phone. Seriously?! Get out of the car and enjoy your kids! Get some fresh air or something instead of being glued to your phone.
Do I think we all need to be totally involved at every moment of the day, no. Do I think its important to be involved in the fun times of our kids lives, absolutely. Do I think our kids need encouragement and praise when they do a good job, sure do. Do I think that one day that dad will regret that he missed out on their sons baseball tournament because he was too busy scoring the highest points on Angry Birds, yup. These moments of life are just as important, if not more, than those of tragedy. I guess it’s all how you handle it though…
These “moments” that we have are all different. It could be when we lose someone we love. It could be when a family member gets sick and it knocks you back in to reality that we are not invincible but we are purely human. It can also be when your 5 year old hits a double and gets so extremely excited. It could be when your child performs in a school play, brings home a good grade on a paper, get’s accepted into the college of their dreams. If you don’t have kids (or even if you do), it could be when you, yourself, accomplishes something that you never thought you could. It’s when you decide to go outside the box and do something amazing. Conquer a dream. It could be so many different things, but if you don’t watch and listen to what is going on around you, you will miss out on it.
I struggle with this too. Sometimes I find myself too focused on emails, daily chores, and such but all it takes is one look from your son when he wakes up, or a “you inspire me” from a long lost friend, or a “can you help me with something”, or Charlie the Roadrunner (most probably won’t get that one!) to bring you back to reality and realize that there are so many moments throughout each day that you need to be aware of. Sit back, listen, watch what is going on around you. Smile, donate your time, hold open the door, give your child a high five, a dance party, a note in their lunch box. You only have one life to live…spend it doing what you love.
No one leaves this world and wants to be remembered as the one who conquered the most video games on his phone. Just sayin’…
Jack is back in school and doing really well with getting back in the swing of things after a pretty rough week. We went back down to PCH for a checkup with Dr Eshun and at the same time, we were doing the check presentation from the “Comedians for a Cure” event so it was an exciting day!
First for Jack’s checkup…we still do not really know what sort of an infection he had removed. It was a node but that is about all we know. All his labs look great, his urine analysis is the most “normal” it has ever been (which is really good!), he tested negative for Valley Fever but we will be doing another check for that next week. Dr Eshun wants to send labs out to CA for a more in depth look at it to make sure he doesn’t have Valley Fever. I promised Jack he wouldn’t be getting a poke yesterday so I wanted to keep that promise and would rather make another trip down to the hospital to get labs drawn so we will be doing that on Tuesday of next week. We will also be doing another CT scan next month to follow up after the surgery and at that time, we will be having an MIBG scan done for extra precaution. If you don’t remember what an MIBG scan is, it is the scan where we go in the day before and Jack is injected with a radioactive isotope that circulates through his body for 24 hours. The next day we go back for a full body scan and if there is any active Neuroblastoma in his body, the isotope will cling on to it and it will light up on imaging. We are confident that nothing will light up but we want to be as cautious as possible.
Everyone was thrilled that Jack was still cancer free and that the mass tested negative for tumor. We walked in to clinic and almost every nurse and doctor (including Dr Eshun!) was wearing Jack’s “Stronger than cancer” shirt. It was such an amazing feeling to see how much they all care about Jack and about all of the kiddos that walk into that hospital. They are constantly rooting for all of them and you can see on their faces just how much they love these kids.
We were able to all gather around and I told them all how much we love and appreciate them. How we know that the protocol that Jack was on obviously killed the cancer in his body but there is no way we would have gotten through the past few years without the compassion and support they have given us. These people are more than incredibly intelligent doctors and nurses, they truly do become your family. After we thanked them for everything and presented them with the check for just over $37,000, Dr Eshun said he wanted to say a few words. This is where Nikki and I became a tad teary again! He thanked us for all that we are doing to raise awareness for Neuroblastoma and Childhood Cancer in general. He told us how much he loves our “Comedians for a Cure” event not only because it is a fun night but because it brings together so many families that have gone through treatment at PCH. He loves how he saw so many parents and employees of PCH in attendance. It really felt amazing to know that he, and the rest of clinic, support us and what we do.
All in all, it was a good day. It was great to be able to give back so much for Neuroblastoma research and it was even better to know that Jack is still cancer free. This child amazes me with his strength and resilience. He has once again confirmed for us that we are dong exactly what we need to be doing. Fighting for him and for all of the kids and families that have had to face cancer.
Jack was a tad shy so he didn’t really want to take the pic! Look at all the shirts!! So amazing!!! I am going to be putting in another order soon so if you want to show that you believe we all are “Stronger than cancer”, you can go to the donate tab at the top of the page and donate the amount for the shirt. Short sleeve shirts are $20, long sleeve are $25, and children’s are $15. The short sleeves are more “fitted” so they do run a little small and come in both woman’s and mens sizes. The long sleeve are unisex and both are so comfy!!