When I was 10, my dad ordered us some baby chickens for our new psudo ranch in the country out of a a catalog. Then he built them a pen in our our unfinished basement, with warming lights, food and water, and a little exercise area, courtesy of my brother and me. This is where they would grow until they were big enough to move out to the chicken coop. We came home one afternoon to find one of the tiniest chicks, stuck in their water dish. She has been there a while and was drenched and exhausted from trying to get out. Broken. So was I. I was not going to let this little bird die. I wrapped it in a washcloth and slept in the basement with her, next to the warming lights that night. She was better in the morning and went on to live the life that all chickens lived on our ranch, which was a total free range, life of luxury. You don’t eat your pets.
When I was 16, I was on my way to babysit for some family friends. A little bird flew in to my windshield and landed on the hood. Broken, but alive. I’m not exactly sure how, but I brought the bird into the car with me and took it along to the babysitting job where I nursed it back to health in a shoe box. A little food, a little water, a little time. It flew away the next morning when I took off the lid.
I’m 36, and as I sit here watching my broken little bird, struggling in pain in her hospital bed, and I have no idea how to fix her. She’s on serious levels of morphine and still she hurts. She’s agitated and confused from the drugs and doesn’t want me to touch her. I’m broken. What do you do when you can’t help the little bird?
She started chemo yesterday with the hope that it will work fast than the cancer. We leave, by ambulance, in 15 minutes to the radiation oncologist where we will begin the mapping for radiation. Radiation should start on Monday. Please Lord, get us thru Monday.
This is obviously a very aggressive cancer. I’m thinking of it as a school yard bully, aggressive but ultimately very weak. And she is strong. And so are we.
Posted 3 years, 1 month ago. 68 comments
Tuesday was randomized for a single transplant. Or maybe, not-so-random-ized. Hmmmm?
Check back tomorrow night. I have a little favor to ask you.
Posted 3 years, 1 month ago. 8 comments
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.
Posted 3 years, 2 months ago. 21 comments
Instead of staying here through her final round of induction chemo, we get to go home for 5 days.
Our resident Rock Star is doing it up the Tuesday way, which means heal up fast and smile.
Thank you friends, Thank you strangers, Thank you God and Thank you Tuesday.
Posted 3 years, 2 months ago. 19 comments
Sorry for the delay in posting scan results. It’s been busy around here and absolutely gorgeous outside. Much too pretty to be on the computer. Anyhoo, here is a copy of an email I sent to some friends on Friday. Now, back to the great out doors. We have piles of leaves that need jumped in.
Halloween pictures to come.
xoxo
What a long couple of days. I just took a nap with the girls and was totally out of it when I woke up.
All in all we got good news. The bone scan came back clean. SHe had a lesion on each femur and a small spot on her hip. These no longer are there. Phew. Her MIBG, which is the most sensitive test, showed a trace amout in the left femur, so apparently there is still some cell activity there but no one is concerned with that. They said it will most certainly be wiped out with the final round of chemo and definitely by the stem cell transplant. Her primary tumor on her adrenal gland started off at 12.5 cm X 15.5 cm. Measure that sucker out on a piece of paper if you want to be shocked. It was freaking enormous. It is now a 3.5 x 5 cm, mostly dead tumor. A little smaller than a golf ball. This is a major accomplishment for a NB tumor. There is still some involvement with her arteries and vessels, but it looks like dead tissue. SOmetimes this just peels away from what is in contact with. SOmetimes not. We wont know until the surgeon is in there. They may need to remove Tuesday’s right kidney and again, wont know til they are in there. The only kind of bummer news that we got is that she still has a 1cm nodule of dead, calcified tumor near her heart that needs to be removed. The surgeon isn’t real excited about doing it but Oncology says it needs to come out. This is still up for debate. It will ultimately be radiated, although this is also up for debate because they have not had an issue where there was a tumor touching the heart before. All of the big wigs around the country are discussing the best plan for minimal long term damage to Tuesday. SO, mostly great news. We will deal with the so so news when we have more info. We all got teary eyed and her Primary oncologist and fellow both called her a miracle and said they could have never imagined that she would be where she is today. God has been hard at work in our little girl.
Surgery is on Tuesday the 4th of Nov. followed by her 6th and final round of induction chemo when she recovers. We will be in the hospital for about 2 and 1/2 weeks. Then home until the 27th of Dec. for transplant. That is a story for another time.
Thanks for thinking of us and praying for us.
Posted 3 years, 3 months ago. 17 comments
