Bated breath

We just had my two month post-treatment check up at Children's Hospital of Wisconsin. We went with bated breath hoping for the best because earlier last week I had spots all over my body that looked just like the spots I had when I was first diagnosed with cancer. Could it already be back? This fast? After just two months off of chemo? Oh my!

Thankfully the answer was no. The cancer is still gone and my counts are good. The visit was a blast. I had a little dance party with my nurses, played a simple version of Simon says, without the Simon says part, got my pneumonia treatment meds because my immune system is still in the doghouse and got an immune boosting transfusion that lasted 4 hours but was otherwise uneventful.

Now on to bigger and better things, I hope. As the chemo fog lifts, my speech is booming and my cognition too. It may just be being 4, but my family thinks I'm really learning so much these days. I'm learning much like a typical kid, I guess, which is no big deal, but having Down Syndrome makes all learning on its own timeline, usually behind typical timelines. Then that cancer curveball came my way. My family wasn't certain what skills I'd be able to acquire, ever. Now that I'm off treatment, the sky is the limit. They're super proud. I've been working with my nanny during the days and my family at night on preschool type skills, like spelling my name and acquiring sight words. Next stop: math...
Well, actually, next stop is potty training...I'm still not a pro at that.
Everything in its own time. Each milestone is a celebration- even that.

What else is next on the horizon? Well, I still can't leave the house until flu season is over. My family is still going to Mass in shifts. But, we pray together at home. As of late, we've been praying not just that my cancer doesn't come back, or prayers of thanksgiving for my healing and my new academic skill acquisitions, but for a very special girl who was in a serious car accident and for her family.

Just like a cancer diagnosis can change your whole perspective on life, your plans and your hopes, your prayers to God, a tragic accident can do the same. It's not easy to stay faithful, that God has this all worked out, but it's even harder to give up faith and think that He doesn't. If you have prayed for me, thank you. I've been incredibly blessed. If you can, pray for this young lady too, that she is healed, pray for wisdom for her doctors, pray for continued strength for her family- unlike a cancer protocol that has a set number of days to the end of chemo, this family's road is uncertain and we pray that she'll soon be on what will likely will be a long road to recovery.

Thank you for praying. We pray as one.

 

Here I am getting ready for my blood draw.

Headed to the hospital.

Book rack!

Donated books! Thanks to all who donate books for us to take each trip!

Reading one of the donated books.

Getting weighed in, I gained a pound.

Getting taller!

 

 

 

 

                                                

Getting checked after breathing treatment.

Sleeping during my transfusion.

Hugging my new Cuddle Bear.

No News is Good News

NO NEWS IS GOOD NEWS -

But here's what I've been up to.

My sister got well. I never caught her potentially deadly virus.

I had a birthday - which is a pretty awesome thing for a cancer patient.

I celebrated my birthday, played in the snow, had a marvelous Christmas, got some Make A Wish news and I plan to have an amazing 2016! I hope the same for you!





HAPPY BIRTHDAY TO ME!

I turned 4 in Mid November!

I had a doctor appointment, and it really was the best day ever, just like my shirt says. The nursing staff was awesome and got me my transfusion of immune fighters to give me protection for the flu season!

Now that I'm 4, my parents moved the crib out of my bedroom and I'm really a big girl in my BIG GIRL BED!

I was notified in Mid December that my family and I will be going on a MAKE A WISH trip! I want to meet MINNIE MOUSE - so WALT DISNEY WORLD.... here we come!

My wish granters sent me a Christmas present too!

Because my sister was too sick on my real birthday, we postponed by birthday party until mid-December. I was able to celebrate with my cousin at her birthday party! I love her!

Check out this cake! A beautiful cake designer made a special cake for me for my birthday. Because I want to meet Minnie Mouse, she made me a Minnie Mouse birthday cake!

On December 24, I got another wish... a wish for a white Christmas. Dieter Sturm and his company of elves and SANTA came to my house and gave us a WHITE CHRISTMAS. Mr. Sturm makes snow for motion pictures and brought his snow machine to our house. It was a special day and a special treat!

For Christmas, my family likes to decorate cookies. I take my work very seriously.

Here are the cookies I left out for Santa.

Grandma gave me a Minnie Mouse tent! I had such fun playing Peek A Boo!

I also received puppets. Mommy and I sang "Who are the People in your Neighborhood."

I hope your cookies were as good as ours. HAPPY NEW YEAR!

I have another hospital appointment this week. Wish me luck.

This is a picture of me in the artificial snow. The real snow is here now and I like it almost as much. Stay warm this winter. Stay safe. Stay home if you're sick. Sorry to be a broken record, but during cold and flu season it's especially important to keep your germs to yourself. I caught a cold this week and even have pink eye, but I don't go out ever anyway... BE WELL AND GOD BLESS YOU!

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.