1 Day to Domino

June 22, 2010

Tomorrow is Domino Day… long awaited and much anticipated. Tanner was so excited, she couldn’t go to sleep tonight (the steroids didn’t help, either!) and I find myself in the same position. We’ve been on a 10-day countdown on the chalkboard in the kitchen, and today the kids and I washed down our dog crate to get ready for the big day. John and I will go to the prison tomorrow to meet the inmates that trained Domino and bring him home. The kids made thank you notes for them today. Jake put Star Wars stickers all over them and Tanner made cut out stars. We hope they will let the inmates have them so they can remember what a good thing they have done for a little girl with leukemia and her family.

The kids have been at Vacation Bible School for the past few days. They are having such a good time. I’ve helped with crafts those two days as well and really had fun. Tomorrow is water fun day at VBS, so they are going to have a double-great day, between that and the dog.

We had a great weekend, too. Tanner has been on steroids and feeling some of the effects of the Vincristine, but she accepts it so well now and we know to just move on and it will get better. She can’t really take the heat (and it’s HOT here!) so water activities or indoor activities are the best bet. Saturday, when I came back from running errands, John, Tanner, Jake and four neighborhood kids were in the backyard on our new playground sliding down the slide into the baby pool at the bottom. They were having too much fun! It’s the simple things, right?

Sunday, we gave John a day off for Father’s Day… no simple task, I promise you. I had to practically run my poor workaholic husband out of the house for some much needed R&R. While he was gone, the kids and I went to the grocery store to buy ingredients for seafood gumbo, his favorite food. He came back at dinner time to posters on the door, made by the kids, a balloon, cards and gumbo. Happy man.

I have to tell you about something that happened on Friday that strengthened my belief in Tanner’s vast resolve and determination. She had chemo, if you remember, on Thursday at clinic – Vincristine through her port. Then, Thursday night’s medication concoction – 6mp (chemo), methotrexate (chemo), neurontin (for neuropathy), mepron (antibiotic to prevent pneumonia), amoxicillin (antibiotic for strep throat), Claritin (for allergies), dexamethasone (steroids), pepsid and zofran (for nausea). Good grief! I expected her to be down for the count on Friday. She woke up a little groggy, but after running some errands in the morning, we headed to the YMCA pool for a swim. We got there and Tanner decided she wanted to take the swim test that would allow her to go down the slides and climb the rock wall.

“Today?” I said. “Why don’t we do it another day?”

“No, I want to do it now,” she said.

The lifeguard showed her what she had to do and my chemo-ridden child jumped in the pool and swam the length without stopping or touching the bottom and pulled herself out on the side. The lifeguard and Jake and I cheered her on from the side, following her as she swam down the pool. She looked, at the end, as if she might give up, but stuck it out. I couldn’t have been prouder. I looked at the lifeguard with disbelief and said, “She has cancer and had a boatload of chemo yesterday.” He bent down and told her “Way to go!”

We were putting on sunscreen later and I told her how proud of her I was. Of course, I teared up. Tanner’s response… “Thank goodness you didn’t do that in front of the lifeguard.” Cue eye rolling.

So, we’ve had fun despite the low counts and the steroids and chemo. It beats the alternative, right?

On a more sobering note, please pray for the family (including the twin) of a little girl named Ellie, whose poor cancer-ravaged lungs will not last much longer. Her mother, just days ago, was blogging how she was not ready to give up on a miracle and was still encouraging Ellie to fight. Today, I read where this same mother has not only had to accept the inevitable for her daughter, but has courageously swallowed her own grief to try to help her daughter accept her fate as well. Imagine trying to assure an 8-year-old that it is all right to die now. Cancer is heartless.


Clinic Day #35

June 17, 2010

Protected during treatment by Mr. Larry's St. Christpher medal

Tanner’s counts had just come up to 710 today from 650 last week, BUT, Dr. Mixon felt that given how good she feels and how great the rest of her numbers look, and the fact that it is summertime, that we should send her to Vacation Bible School next week – hallelujah!!!

So glad we didn’t have to disappoint her again. She is really excited about going and it will be Jake’s first time to go, so he is excited, too.

She got her dose of Vincristine today through her port and will start steroids tonight. It was a very smooth visit, but I am thoroughly tired anway.

Jake spent the day with Aunt Beth (thank God for Aunt Beth) and had a ball.

Now, just keep your fingers crossed she doesn’t get sick again.


Laying Low

June 14, 2010

We’re laying low. It’s too hot to do anything but swim, but the pools are mostly too crowded for us… enter, the Whitler’s with their backyard pool! We swam at their house today and had a great time. Thanks so much, guys… you’re always there when we need you.

Tanner is feeling fine. She was really fine after one day of the antibiotics. The fact that she has been able to beat this so quickly makes me believe her neutraphils are on the way up… we hope! We need them to recover in time to get to Vacation Bible School next week. Tanner will be totally devastated if she can’t go. She handled missing her show on Friday really well, but it all burst from the seams on Saturday and Sunday. Like all her pent up frustration just came out at once. Ugghhhh.

We snuck out to the neighborhood pool on Sunday morning when most were at church and got to swim with Madelynn. Madelynn is a little 4-year-old girl in our neighborhood that also has ALL. It was great for the girls to be together and for me to get to commiserate with Madelynn’s parents. There was some considerable mutual steroid-cursing going on, for sure. In a couple of weeks, Madelynn and Lily and their families will be coming to our house for a cookout and some fun. I’m looking forward to it.

Other than that, wracking my brain for fun, germ-free activities that don’t put us outdoors in the heat of the day. It’s really quite challenging. More swimming at the Whitler’s on Wednesday. Then, clinic again on Thursday.

Time to have a talk with Tanner’s neutraphils… I don’t think they understand how much is at stake.


Clinic Day #34 — By the Hair of Our Chinny, Chin, Chin

June 10, 2010

As we feared, counts today were not good. Her neutraphils were at 650, which is, of course, neutrapenic. The methotrexate that made her so sick last week was doing it’s job a little too well, apparently. Tanner could tell by the look on my face when I was talking with the doctor that things were not good and began to cry saying, “Can I go? Can I go? Please, please… I have to go.” Mercifully, the doctor felt there was little additional risk in letting her do the show tomorrow since she has been with these kids all week and it’s summer time when all the respiratory stuff isn’t floating around. Thank you, God.

So, as nerve wracking as it will be for John and I to let her go with such low counts, the show must go on. Then, we will hunker down until next week and see what happens with her counts. They adjusted all her oral chemo back to 50% and we will start the process of bumping her up towards 100% all over again once her counts recover. Her red counts were fine, hence all the energy.

She was really tired this afternoon, but had trouble going to sleep – I think she’s just so excited. We’ll take lots of photos and video and post them tomorrow so you can see the star in action.

I jammed my big toe today in a stumble not worth discussing and have a swollen and painful foot that has put a little hitch in my getalong. Suffice it to say, we will be a laid back group this weekend.

Thank God for the Whitler’s pool, which will be a safe place for us to spend some time next week. Tanner actually has a full clinic visit next Thursday, even though it’s been only three weeks since the last one, because we got off schedule due to the end of school. They don’t hold Vincristine for low counts (it doesn’t really lower counts), so she’ll have that and start her steroids. Steroids, although they sometimes raise counts, actually compromise the immune system, so it may not be a very good couple of weeks ahead. We may be missing Vacation Bible School.

But, we are soooooooo grateful she will get to perform tomorrow. That’s the main thing. Thanks for all the good thoughts and prayers. They worked.


In the Hospital… again

Well, it was shaping up to be such a good week, but Tanner came down with a low fever this morning that crept up to the dreaded 100.4. Once it hits 100.4, we have to come to the hospital to be checked out. We thought we were going to make it into the clinic, but with traffic, didn’t make it in time and had to come in the the ER. They did some bloodwork and her counts look good, and normally they would have done some IV antibiotics and let us go home provided we come back to the clinic tomorrow for a follow-up. Since it’s a holiday tomorrow and the clinic is closed, we are having to stay overnight so they can do bloodwork tomorrow and just keep and eye on her. Unfortunately, the hospital is full, so it looks like we’re stuck in the ER for the night. It’s noisy in the ER and no one sleeps very well here. It’s 10:30 and Tanner has still not been able to go to sleep due to all the interruptions and some pain. No nap today, either. I’ll be “sleeping” sitting up in a rocking chair. Lovely.

I’m a little glad we’re staying, though. She’s having more leg pain than normal and odd hot and cold flashes even though her fever is down. Better here than at home where all of this would be freaking me out.

The reality of this disease never ceases to amaze me. We were planning an afternoon swim at the Whitlers today and Tanner was so much more vibrant today. Even while she had a fever, we sat at the kitchen table and painted suncatchers, a project from VBS, which we missed, but a friend was nice enough to bring the crafts by. Just makes you feel like everything could go wrong at any moment. I’ve never been a worrier, but by the end of this I may be.

Did I mention that Jake and I have had colds and that’s probably why she has this fever? Imagine feeling like the smallest sniffle you have could be deadly for your child. I’ve hand sanitized myself to death, gone to the minute clinic and begged antibiotics out of them so I would get better quicker and even worn a mask around her at my worst. But, I’m learning that even when her counts are good, she still doesn’t have even close to the immune system you or I would have.

Thank God my Mom was in town so I could leave the house quickly without worrying about Jake. I keep thinking I can do this by myself, but I can’t.

Anyway, I’m rambling now and Tanner’s pain is increasing. I’ve had them call her oncology team because something weird is going on… my Mommy radar is going off. I’m going to see if they can get her some stronger pain meds.

Will update in the morning.