Everyday is Thanksgiving

Yes. We had a really weird Thanksgiving.

Not at all like we planned.

No big family gathering. No big dinner. We weren't even together just the 5 of us, because my sister had Shingles and we couldn't risk me catching that with my immune system so deflated, so she wasn't even living at home that week.

No last chemo pill. No big celebration. No after cancer party either.

But, we had a Thanksgiving yesterday. Dad brought home from the store a special treat: Chinese Food! We had egg drop soup, veggies and chicken, General Tso's Chicken, and shrimp fried rice. We held hands, prayed, and went around the table and told each other what we were thankful for this year.

And you know what? It was worth the wait. We thanked God for Diana's sacrifice, leaving home for 3 weeks just to keep me safe. We thanked God for my grandparents for taking good care of her. We thanked God that I didn't get Shingles, that could have been so bad- I don't even want to imagine it. We thanked God for all of the things we have, like food and a house. We thanked God for our family and friends who supported us this whole journey through.

This year Thanksgiving was nothing like we planned, but it was perfect in its own way. We eat Turkey quite often, Chinese, once a year... What a fun memory and way to finish off this cancer experience.

Now on to Christmas, potty training and signing me up for some saddle time with SMILES and maybe even a toddler dance class at the Dance Factory. I have to wait for my immune system to come back all the way and for flu season to be over... But keep your eyes peeled. I just might be out and about in the community soon!

God Bless you and Happy Thanksgiving!


Thanksgiving FaceTime call.





Playing with my kitchen on Thanksgiving.











Playing with play dough from my friend Shay.












Helping Mom decorate our Christmas Card tree.











Cooking.





Smiling my cheeky smile.





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Wait, what?

So, my mom taught me this jingle about writing papers. You wouldn't think a lot of kids my age write papers, but a few do. Speaking of my age, I'm 4 now, but back to my story. When writing a paper, Mom says:
1)Tell them what you're going to tell them.
2) Tell them.
3) Tell them what you told them.

So, here goes. Tell them what you're going to tell them.

Cancer is over! No more chemo, just like that! But, I'm not out of the woods yet. My big sister has a contagious virus and all big celebrations are called off.

Tell them:
Yep, you read that right. Cancer is over. Chemo is over. Just like that. No big count down. No taking-that-last-pill-picture. No crying. No big moment. No celebration over a turkey surrounded by my family, celebrating being done with cancer on Thanksgiving day itself like we had planned. It's just over now. I took my last pill this morning and had no idea it was the last one and just like that... Finito! Poof. No more chemo. We hadn't planned on that.

Why is cancer over? Well, I'll get to that too, but first, I want to talk about making plans. We, my family and I, had plans. We didn't have plans on acquiring cancer. That kinda came out of no where as it does for anybody. We weren't too keen on having the kind that lasts for two plus years, either, but we had plans on how to celebrate it being over. Big plans, but now it's over and it snuck out like a thief and we don't get to do what we planned. We feel kinda strange... How is it that this detour, this cancer thing we hadn't planned on, has a detour of its own?!?

Well, that's the way it is sometimes. And, the big take home message is, it's not really our plan anyway. God had us fooled this whole time. This big build up was for nothing, because He knew all along that my cancer journey would just end, like a finger snap, on a Wednesday afternoon. And you know what- how great! It's over! Who-hoo. I wasn't a fan of those daily crushed pills anyway. Who am I to question what's been planned all along for all time? God's timing is always better than my timing. Who are we to think we know better than God? Ha! Just when we think we have it all figured out, all planned out, there pops up the detour sign... And a gentle nudge: "Hey, You, go this way. I've got something even better planned for you."

Now, we don't always see the detour sign, and we don't always obey the nudge and sometime we make our own plans and follow a shortcut we think will work better, but God is the ultimate in GPS. He knows the right way for us to go, and it's silly for us to question it.

But, sometimes we can't help but question God.

Turn now, God? Take this detour?

You got it. No big Turkey day? No after cancer party? Alright...what's the plan? Why did you just pull all the fun out of my 10 day chemo countdown? And does no big thanksgiving last chemo day mean no big after cancer party too?

"Yes."

Now, wait a minute. No after cancer party two days after Thanksgiving? Mom had a pretty nifty shindig planned. What's going on there?

Well, it turns out my sister, who I've talked about here before has a pretty serious skin infection. It's so serious we can't even be in the same house. She's got Shingles and she's got a really weird type, it looks like the not contagious older person type, but it is acting like the airborne chicken pox type and it's on a 10 year old. So, no being in the same room as my sister for two weeks. Well, that means we wouldn't even be together for Thanksgiving, so the celebration I dreamed of where we all stand together hugging and cheering and jumping up and down couldn't have happened anyway on Thanksgiving day, because this year we can't all be together. And we couldn't all be together two days after either for the big after cancer party. So, that's why it's cancelled. Ha! I see your planning now, Big Man.

Now, for the reason as to why I can't finish out my last few days of chemo... Well, apparently my blood counts are too low and my immune system is too weak to keep taking this toxic pills. Great for me, really, good riddance drugs, but the reason my counts are low MAY be because I'm fighting the same bug my sister has. (And that would be Bad!)

Now, my mom is sure this isn't happening. She is putting her faith in God that He is bigger than a few red dots and that I won't break out with anything. The fact that my immune system is so depressed is just because it is. It was low two months ago for no good reason and its low now, just to give some extra flair to our cancer journey story, but it isn't low because of some communicable disease.

On the off chance that Mom is wrong... And watch out, them's fighting words, well, I'm going to need some serious prayer, but until then... I'm going to start my chemo free living!


Tell them what you told them.
No more cancer!
No more chemo!
No big Thanksgiving event or After Cancer Event, because my sister and I can't be in the same room together probably until December...

Yes, rather than all of the hub bub, we will have a small intimate day of soulful prayers of thanksgiving for my having made it all the way to the end of this part of my journey. Thanks for all of Mom and Dad's prayer warriors. Thanks for well wishers, for friends and for family. Thanks for scientists, doctors and nurses. Thanks for the opportunity to slow down and say thanks, and not get too caught up in all the pomp and circumstance of celebration. No planned last-chemo-day because that was God's plan all along.

Now, we did have a little celebration already. As I hinted, I turned 4 years old this week. Can you even believe it?! We didn't have a big birthday party either but that's ok. Instead of opening all of my gifts at once, I'm mastering opening one present every 4 to 6 hours. We couldn't do a grand present opening thing, because, again, mom had my sister in quarantine to keep me safe and we didn't want to party with her not there. Quarantining her is probably why I don't have this ugly bug that she has.


Who are we kidding, that quarantining my sister is the only reason I'm not sick yet? I'm only NOT sick because it's not in the plans for me to catch this thing. I'm the luckiest kid alive! Lucky because I have you praying for me. God is listening to your prayers and so far He's on board with your pleas to keep me safe!

So, pray for me. I really need it. The risk is scientifically really pretty great. And, pray your own soulful prayers of thanksgiving, for family, friends, food and all the opportunities and gifts you've been given. And lastly, pray for the ability to see the detour signs and heed the nudges.

Heaven knows what lies around the next bend. Maybe it's some quiet time, like it is for me, or maybe God's got a big party planned for you. Whatever it is: go with it. His plans are always better than ours. It's time to Let Go and Let God!

Happy Thanksgiving and thank you for your prayers.







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Redirection

Redirection: Don't think I don't know when they do it. If I'm upset about something, it's not uncommon for Mom or Dad to change the topic, dangle a toy, or try to bribe me with something so that I'll stop fussing about whatever is bothering me.

Well, it works sometimes and sometimes it doesn't.

The last two weeks have been a bit tricky. I was supposed to have a spinal tap last week, but I was too sick. Then this week, I was supposed to have a spinal tap on Thursday, my normal hospital day, but my nurse called Mom to say my immune system was really in the dog house and I needed an immunoglobulin transfusion STAT and had to come in a day early.

So, Wednesday we went in for transfusion- long day. Then today we went into the hospital for spinal tap, breathing treatment and my flu shot- long day.

I did great both days. Mom had me redirect my focus and had me dress up in my Halloween costumes and bring smiles to all the people in the hospital: other sick kids in the hallways, nurses, doctors, parents, construction workers... You name it. Me, my smile and my costume really helped me take my mind off of the hard work ahead. It was good for Mommy too.

A friend shared this with Mom today and it's a bit of good advice about redirection.

When you're feeling stressed, stop and take a deep breath. Next, think about all the reasons you have to be thankful. Thankfulness can help chase away stress every time. -Dave Willis



Wow! That hit the spot!
We are thankful we are almost done. Thankful I didn't have too many bad side effects from the chemo. I'm sad a little about losing my hair again this week, Mom and my doctor noticed that I'm shedding again, but I'm thankful that it has grown back before. We are thankful to have met some really strong people fighting this disease who have modeled grace under fire. We are thankful for friends and family who have prayed.

Here are pictures from my two day hospital week. Enjoy. And join me in focusing (refocusing) on the good!

P.S. It's all good. Even in suffering there is learning, and growing closer to God.


























































- My friend Avery's Psalm was open when Mom went to pray in the hospital chapel while I was in surgery. Thanks A for watching out for me. Miss you.

Isolation

It's no fun to feel isolated. All by yourself. Alone. Like nobody is with you, or gets you or gets what you're going through.

It's easy to feel isolated when you're sick. In fact, Mom and Dad have put the lockdown on me for nearly 800 days. Sure I get to go to church in the summertime, but that's only once a week. And Mom does take me to the Zoo, for a speed lap, careful to not push my stroller near any other Zoo guest, but that's only once a month.

Sometimes people are sick and don't look sick, or have been sick so long that their friends forget what daily battle they face, that can be isolating too.

Yesterday I was supposed to have my last spinal tap and we were going to head into these last 30 days, head held high, slapping the hind quarters of my riding horse... Well, it's more like holding on with all fours as I try not to slip off the soft smooth slippery shell of a turtle. I guess I've got a few more things to learn on this journey. And here's the spoiler alert: slow or fast: we're never really alone.

So, yesterday I was supposed to have my spinal tap, but I caught a cold and my airways are too swollen that anesthesia was out of the picture, add my DS anatomy and the fact that my hemoglobin was under the cutoff for surgery... There was just no way that was happening. Too risky. So, I was sent from clinic to the day hospital side of the MACC Fund and they decided to give me a blood transfusion.

I totally thought I'd get to the end without another one of those. They don't hurt. They make me feel like a human again. I lose my vampire appearance and I can do everything better: fight a cold, breathe, run, sleep, play. So, thank you blood donors. Even though I pray I won't ever need another transfusion, other kids will, other grown ups too. I'm not alone because I have the generous blood of a donor coursing through my veins right now. Thank you.

Once on the Day-Side, they put me in isolation. They wouldn't let me out to watch the big TV's, play with the plastic dinosaurs, or sit at the really huge yellow art table. They didn't want the other kids who are also sick like me to catch my cold. So, Mom and I played in my hospital room all day. Isolated. But not really, first we had each other. Secondly, we had the support of our friends who let mom know they are praying for me and my cold and my journey. Thirdly, we've got God. How silly that they call it isolation, when they should just call it Germ Box, because we're never really alone, never really isolated.

God is there when you feel alone, you may just have to give Him a shout out to really feel Him with you, but He's never got an on-hold message and He'll always pick up. He knows just what you're going through and He promises to go every step of the way with you, if you let Him.

He knows I can't wait to get back out in the community, to go to Mass, to the park, playground, and public places. He knows how other sick people feel, poor people, sad people, angry people, people who are hurting. He doesn't make the hurt, but He gives people the tools to get through each day, they just have to call on Him. It's pretty awesome.

For me, well, He is giving me the strength to get through these last few days, one day at a time. He also told Mom I'd really like to snuggle up with a new Minnie Mouse plush toy. And, wha-la, she showed up with one, just as my transfusion started.

All in all, even though my surgery was postponed a week, I am doing okay. I slept through the night even. I hope you're feeling okay too. Try a little prayer, if you're under the weather and remember you're never alone. You may have to live in a Germ Box, but you're never alone.
No really, if you don't feel good, stay home, keep your germs to yourself and I'll see you on the other side in a few weeks!!

Thanks and God Bless You!!

Photos: it was Halloween Costume Day, so I wore my Minnie Mouse dress. Enjoy.


































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Turbulence

Just like that pit in your stomach when you're excited and eager for the airplane to land, but then there's turbulence and you just pray you land safely and without throwing up...well, that's where we are in this journey...

Only two months left of chemo, and yet we've hit a little bit of turbulence. Yep, you read that right my countdown can now be done on one hand. Two months left, two clinic visits left, only one spinal tap left. Then, one more trip to the OR after that to remove my port. Fantastic right, nearly there. Time to raise up my arms and run around excited... Well not just yet. Each day fighting this disease is just as important as the day before and the day after. There's no loosening my grip, no free-fall.










Mom took me to my clinic appointment yesterday and talked to my NP about my counts and my blood. I'm pale. The bump up in my chemo the last two visits is finally catching up to me and is killing my would-be-but-sure-hope-they-are-not-cancerous-white-blood-cells as we had hoped, bringing my 1800 to 900. Yikes. But the bump up in meds is also killing my red blood cells and making me pale like a vampire. I hope I don't start getting too irritable, and feeling yucky. My vocabulary is worlds from where it was a year ago, but I still can't quite find a way to tell my family if I just don't feel good or have a tummy ache or headache. Please pray for me, if you pray, that my body recovers some, even though they are keeping me on this high dose, and that I don't need a transfusion and that I don't catch a cold. With an ANC of only 900, I'm still immunocompromised. At this rate, I'm not sure I'll ever be let out of this house, except to go to church. I do so enjoy that! If I could travel, I'd love to go see the Pope! How exciting that he's here in the states! But, the crowds- oh my- too big for me!

I'll tell you something though, between you and me... Every time he kisses and blesses a child with Down Syndrome, I feel like he's blessing me. I know I was meant to be here and that through me God is teaching us His lessons about love, prayer, the value of all living persons and the purpose of suffering. We are all God's tools. We all can be instruments of His peace. That's one of my favorite lines from Pope Francis's name sake's prayer. What kind of tune are you going to play on your instrument today? How will God use you today?

I'm just going to try to hold it together today. A quiet melody of giggles and smiles. I hope to feel better. I hope you're feeling ok too. Start washing your hands more, covering your sneezes and get your flu shots. You're protecting more than just you, you're protecting your loved ones and all those in your community.




Mom let me buy some band aids from the pharmacy.




Mom took me to the zoo for a quick buzz in the fresh air to see the new baby giraffe, but she was not out in the yard. But I got out of my stroller for two whole seconds to compare my height to that of some horses. Boy am I getting big! Thanks Mom! It's still too risky for me to touch any of the really cool park and playground equipment at our Zoo. Maybe next spring.




Mom paid it forward and bought a stranger a coffee on the way home. This card is about the paying it forward concept and about raising awareness about childhood cancer.




Thank you St. Andrew School and Mrs. R for the book donations! Mom filled up the bin again and tons of kids will have books to keep their minds off of things while waiting for treatment at the MACC Fund!










May God bless you and keep you safe. Thank you for your prayers.