Looks like the only time I have to be on the computer happens to coincide with the girls bath. Hopefully they feel like “swimming” until I’m able to get through this post.
So where did I leave off, oh yeah, surgery. We got home and I carefully carried Tuesday in to lie on the couch, or is it lay, while I ran back to the car for Piper. I walked back in to find Tuesday jumping on the couch. And such was the rest of our week. She bounced back beautifully from surgery. In fact, she started really talking. Lots and lots of talking. It was great to be home, I guess, but knowing that we were going back in on Friday left us all a little on edge. Ok, a lot on edge. We all did too much yelling and fighting. Charley and I went out with some dear friends and I did too much drinking. It felt great at the time to cut a little loose but it’s probably not so cool to wake up and wonder if you can push your kid’s chemo back a few hours because of a self induced red wine headache. I didn’t do it. Geeze. I just thought about it. So we made it in on time, and by on time I mean an hour late, to start her pre-hydration. As we were walking in to the hospital we ran in to the Millers who were there for Justin’s chemo. It was great seeing them and a great distraction for the morning. Justin did what I’ve always seen him do during chemo, which is play with about 59 action figures. Such a trooper. This poor dude has been thru the ringer and his family has the greatest attitdue about everything. Charley and Jeff, who happen to know each other thru work, bs’d and answered work emails while Kelly, Justin’s sister, took over all mothering duties with Tuesday. She entertained her for a couple of hours and painted her dog pictures for her hospital room walls. What a cutie! We also met another Neuroblastoma kiddo, Tate who just finished up transplant. His mom looked pretty great for just endouring a month of isolation and all that entails, so there is hope. Stacie and Kennedy, who was sporting some great new hair, were there to offer support to a friend going thru tests and it kind of felt like a weird, twisted little cancer party. The rest of Tuesday’s admit
Interlude: Girls needed out of the tub, Piper decided to pee on the potty which need a celebration and a piece of candy, which apparently was not enough because she got real excited, jumped up for another piece and managed to knock a glass of red wine (are you noticeing a trend?) on to the floor where it explode in to a gazillon pieces and the girls started freaking and Spencer went in to panic mode, because where is Dad? Yeah? Where the hell is he? Oh, returning a dish to the great neighbors who made us dinner and holy shit, I’m beginning to think that fighting cancer isn’t going to be what drives me to drin…
Too late.
The rest of Tuesday’s admit was really uneventful. She did puke, on Charley’s shift, (sorry honey) for the first and only time since starting chemo. We left on Monday afternoon, after sharing some “Go Away Cancer” cake with Tuesday’s nurses, doctor’s and Chaplin and Aunt Winnie, Aoife and Piper. It felt so good to be done with this major phase of treatment.
We also got the pathology back on the tumors from surgery. The tumor near her heart was a calcified nodule. No cells at all. Same with this little spot that they found on her liver during the surgery. Her main tumor and kidney had 10% living cells. For those of you that had Troy J. for your math teacher in middle school as I did, that means that 90% was dead. Regardless, it’s out. The small amount of cells still in her body are now “mature” which is good and have a low MKI which has to do with the mitosis (dividing) of the cells. Again, low = good. We are praying, and you can too, that this final round of chemo wipes out every remaining cell.
SO what’s next? Bone marrow transplant, which is more correctly referred to as a stem cell rescue because she is getting her own, clean stem cells back. She is on a study and will be randomized for one vs two transplants. We are faithful that she will get what she needs. After that is radiation, followed by 6 moths of maintenance and an antibody study which I’ll get in to when we get there. We still have a long ass road ahead, but in the mean time we get to be home for a 6 week break from the hospital. I’d like to personally thank Tuesday for timing her cancer so that we’d be on ‘break’ over Thanksgiving and Christmas.
Tuesday seems to be feeling good. Watching her in the tub makes it all very real. Rubber tubes hanging out of her chest, a 7 inch incision across her much too skinny belly, catheter in her thigh, bed sore scars on her little bald head. Yet there she is, drinking bath water with her twin and laughing, laughing. God I love that girl.
Please keep Spence and Axel in your thoughts and prayers. I think the reality of our new world is starting to take a toll on them.
I thank God everyday for abiding over Tuesday and giving her and all the other kids such great parents. You and Charley are the best. Plus, you deserve to have all the wine you want!
Please give all the kids a big hug from us and one to you and Charley too. I hope to see you before too long and will help out any way I can.I believe we all are getting the Christmas presents that we wanted by getting a HEALTHY and Happy little girl at home in time for Santa and to eat some turkey.
We love all of you and pray each day for all of you.
Love,
Aunt SuSu and Uncle Jim
PS….send more pix’s when you can
I don't know if it's your words or my own glass(es) of red wine that moves me to tears. My gosh, I love you guys. We haven't missed a mention of Tuesday in our prayers before meals, bedtime prayers, church prayer chains…you get the picture. My heart goes out to A&S. I thought it was hard for Piper but realize it must be harder for the boys because they're older and understand more. Keep truckin' sweetie and I'll keep prayin'.
xo
lisa
I am thanking God daily for the strength he has provided you and Tuesday to lean on. She is the best little trooper out there. I know you are glad to have the chemo done and over with, and I will be praying that the radiation wipes out the remaining cells without little TuTu having to go through any horrible side effects. I agree with SuSu…the best presents of all for anyone reading this blog and that knows you is the fact that Tuesday is home and doing wonderfully! Hugs JK! Hang in there, it’s almost over.
As always, prayers are coming your way. It was very nice of Tuesday to plan things so you have the holidays off. Enjoy them and your 6 week vacation!!! You guys deserve a little break.
OMG evry time i read you im moved to tears, i thank God for giving Tutu such a great MOM
Goodness! Thank you for the re-cap. The image of the girls in the bathtub has me bawling in my classroom. You are such a special family.
I'm so glad to hear that Tuesday is doing so well! We say a prayer for her every day & I just know God is hearing us. We will continue to pray for her & the rest of your family as well… I know it's difficult on everyone. Glad to hear you're all home & will get to be on "break" for the holidays! Enjoy them!
I wish I lived closer so I could throw you all a big party.
Little Miss Tuesday has so much spunk. I’m so proud of her. She gets up and gets on with things and goes back to being the toddler she is.
I’m so glad you are still getting a lot of help.
That t-shirt rocks.
I’ll be raising my glass of red tonight to 6 weeks of family time at home. Yay
Lots of love and grace to you all for your fabulous example of living thru hell with dignity and charm.
That fabulous “Daddy” guy you married is keeping us all well supplied with Whitt levity – PTL!!
A day never passes that I don’t marvel at all the love, kindness, gifts, prayers and food that come your way.
Thank you Lord . . .
Wow.. I’m just in tears reading what you all have been (are going) through and what lies ahead. I know you have a long road ahead, but you have made it so far already!
Enjoy your break! This holiday season is going to be so great! We all have so much to be thankful for!
Tuesday is such a little fire cracker! Cracks me up about her jumping on the couch!
Jess – There is not a day that goes by that we don't pray for Tuesday and your family! Such wonderful news to hear she is doing so well!
You deserve wine and more wine and more wine!! You and Charley are absolutely the most amazing parents!! Hugs to all of you!!! We love you!!
Bill, Jenn, Lauren & Avery
Jess,
It's so good to hear you talking like yourself, even if it is about cancer & all the crap that comes with.
Praying you have a wonderful holiday. there is so very much to be thankful for.
Much love always!
Every time I read another post, I cry! I can't even imagine the road you are on and I am so very Thankful that Tuesday is doing so very well!
A&S are the best big brothers. I am sure this is all very hard for them. I hope you have a wonderful holiday and I am glad that you get a little break to reconnect.
thinking of you and your family… always.
Thank you for your kind entry in our guestbook ;0) We have been just crazy busy with normal toddler accidents and you will be too before you know it! I never thought we will get here ever and I know I am not the only one who says so. Our docs just keep looking at Brando goin “wow, was never sure if this day will ever come” but it did and I am forever thankful. Hang in there and keep enjoying your babies! Hug them even when they don’t want you to ;0) hehehehe I do ;0) these past almost 2 years now have thought me so much about living in the moment and just letting go of anger and frustration (at least try) and I actually lernt to say “whatever” and “so what” and “we will deal later” and you will too. I used to be so caught up in the fast pace life/career/school/everything perfect world we worked so hard to get to; but I learnt to stop and smell the flowers and smile even when I would just blow up and yell in the past. We realized what a miracle we have and how blessed we are for all we have been through. It has been a gift that I would never trade for anything ever again! You are on your way to that moment and you are doing a terrific job! Your energy, your spunk, your fire within and your love for your kids shines through and it is also the force taking you and your wonder baby to the next level! Hang in there! Tons of love coming your way!
Hickeys
http://www.caringbridge.org/visit/brando
I wish I had the beautiful words that so many others have expressed here…this update is so touching, from the images of the girls in the tub, to your preview of what is to come in the months ahead.
Still praying for you all, every day, and I am happy that you get to enjoy a long break from the hospital, during the holidays, even!
Thank you for sharing this with us, your amazing little girl is an inspiration to us all 🙂
What an amazing little girl Tuesday is! And what an amazing family to see her through this! Hope the holidays bring you MANY joys!
HAVE A WONDERFUL THANKSGIVING! ANOTHER YEAR WE ALL HAVE SO MUCH TO BE THANKFUL FOR!
TONS OF HUGS FOR ALL OF YOU
HICKEYS
http://www.caringbridge.org/visit/brando
Thinking about Tuesday on this Tuesday. I absolutely loved your update from last week, Jess. Your bathtub story is so moving. I realize you still have a long way to go, but I bet that five months ago, you would have thought it was so incredibly long to get to where you are right now. And Tuesday is making it. No. MORE than making it. She’s kicking butt. Love to you all this Thanksgiving week. There’s so much to be thankful for, as I’m sure you’ll agree.
Oh man oh man oh man Jessica Kate. How on earth can you do this. I know, just one day (sometimes a minute) at a time.
Thankful…a word that can’t even describe how I feel.
Bless you girl. There’s just not much I can say except WOW! Now, turn it upside down and it’s MOM!
HUG!
Okay you made me cry again! God I love that girl too!
that shirt that she is wearing is adorable… I know this might be a weird question, but do you know where to get one of those shirts??
Lindsay
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Of course, given sufficient time, we get used to the switching arrangement.
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