I Come Home, Tanner Goes to the Hospital

November 17, 2010

As I was on my knees fastidiously de-radiating my friend, Kim’s house so I could go home to my family, John and Tanner were on their way to the hospital with a fever. The cough she had been fighting all week finally peaked and she was up to 102 degrees. John was able to skip the ER and go straight to clinic (much faster). Fortunately, her fever came down and her counts were high enough that they were able to come home after an IV round of Rocefin (a broad-range antibiotic).

She took a big nap yesterday afternoon, but was feeling fine by bedtime, despite some coughing during the night. We kept her home from school today, but we all went in for her Thanksgiving play and Thanksgiving lunch (I didn’t stay for lunch as I am still not clear to use regular non-throwaway utensils). The play was cute and she is feeling fine. I think she will be able to return to school tomorrow.

The bumped up chemo has done it’s job. Her neutraphils were at 1,150, which is about perfect for maintenance. Her hemoglobin and platelets, however, are holding strong, which is all great. Hopefully, they won’t drop any more and she can just stay at this perfect spot.

While she and John were at the hospital, they met some Titans – Mark Mariani (L) and Robert Johnson (R) – who were visiting kids in the infusion room. Tanner looks like a little sapling between two mighty oaks, huh?

I’m feeling just fine… a little tiny bit fatigued, but otherwise back to my normal self. I can be around the kids, but can’t touch them much. No more than 30 minutes of contact a day until the day after Thanksgiving. I get quick hugs to try to sustain me.

John’s Mom is on duty and has been a great help. She’ll get Jake to school tomorrow while I go into Vanderbilt for my body scan. This should tell us whether the cancer had spread anywhere beyond the thyroid. I have to lie still for an hour-and-a-half. Let’s hope I can listen to an ipod… otherwise it’s going to be a very long scan. Maybe I’ll nod off…

Speaking of nodding off…


A Blog Holiday

November 30, 2009

Sorry to have not updated in so long… I was on a blog holiday… in honor of Thanksgiving. Okay, maybe I was just really tired and haven’t had anything very nice to say.

I feel so ungrateful admitting that. In reality, we had a nice holiday and I got out quite a bit over the long weekend. Tanner is feeling really good and we’ve been looking at houses again to see if we might find a big yard to romp in when we can’t be around others (ours is a postage stamp). I cut about six inches of hair off and feel so light and wonderfully different. (I felt conspicuous in this family with all that hair.) I saw New Moon with girlfriends and laughed more than I have in a long time. We got a Christmas tree on Sunday morning and actually went into the outdoor garden section of Home Depot with both kids in pajamas (the only public place we have been in almost a month). Tanner ran all over in iCarly pajamas with her pale, bald head uncovered. It was a sight to see.

So, I should have had lots of nice things to say, but somehow I just couldn’t write them down. Whenever I sat at the computer, I wanted to write about how frustrated and irritable we all are cooped up here. About how Tanner is not sleeping, waking 4-5 times a night, sometimes with nightmares, sometimes sleepwalking. She is getting up consistently now at 4:30-5:00 am for good. About how John and I are exhausted. About how Tanner and Jake, once fast friends, can now not spend 2 minutes together without fighting. About how Tanner has asked to go back to see the play therapist because she knows her emotions are out of control and she doesn’t know how to fix it.

I know I should be grateful that our plan to keep her isolated and avoid any more hospitalizations during this phase has been successful. And, I suspect her counts will have come up when we go to clinic on Friday and we will gain more freedom in just a few days. I know how I should be feeling, but I just can’t seem to get there.

Instead, I feel irritable and cranky (have I mentioned I don’t stay at home very well?) and tired of playing 2- and 6-year-old games. I feel desperate for normalcy and a little resentful of all those people I see just romping about taking their freedom for granted. I realize that makes me a glass half empty kind of girl this week, but that’s just the honest truth.

Thanksgiving night, after having a nightmare, Tanner asked me what good thought she could think about while she tried to go back to sleep. I was completely stumped. What good thing could she look forward to? A playdate with a friend? No. A birthday party? No. A special event at school? No. A movie with Mom and a girlfriend? No. No. No. No. No. No. Six months ago, I could have rattled off five fun things to look forward to without even thinking about it. Thursday night, a full 60 seconds after she asked me, I came up with this beauty: maybe you and Jake could get your little stuffed dogs and make a little bed and house for them out of a cardboard box… and decorate it. No wonder she showed up in our bedroom 5 minutes later crying that she was still scared.

It is a horrible feeling to realize your child has nothing to look forward to but another day spent with her Mom and her brother in the house or at some abandoned playground, hiding from other kids and germs.
Tanner’s state of mind is evident in her play. She has played cancer nurse every day for a week. She takes lab tests, delivers chemo, puts me and Jake to sleep for procedures and delivers the bad news that we have cancer… over and over again. This week, the cancer has taken advantage of our weariness and has moved in to take over.

Tanner has just woken up again for the third time already tonight. It promises to be another sleepless night. I snapped at her when she showed up at the balcony the third time, telling her to go back to bed and refusing to come up again and tuck her in… again. I’ll go check on her in 10 minutes and help her if she’s not asleep. There’s no way to know whether her sleeping problems are physical or emotional. I’m leaning towards emotional since she hasn’t had chemo in several weeks. Either way, they’re exhausting for all of us.

So, now you’ll wish I hadn’t broken my blog holiday. Hopefully, I’ll cheer up or it will warm up so we can at least go outside. Friday seems a long way away.


Clinic Day #23

November 25, 2009

I wish I had taken a picture. Lily, Tanner’s friend who also has ALL, was at clinic today. She, Tanner, Sara (the child life specialist), and two other little girls sat around a table in the middle of the clinic and played UNO. Tanner and Lily were accessed, with tubes hanging out the bottom of their shirts. One of the other kids had an IV pole. It was such a normal scene in the middle of an abnormal situation and was testament to the fact that kids will find a way to be kids, no matter what is going on with them.

When we were getting ready to leave, Tanner and Lily sat next to each other in infusion chairs to remove the sticky patch placed over their ports to keep the needle stable. Lily casually said, “Tanner, do you need some Remove? I have some you can use.” Tanner took the little packets and then both of them pulled up their shirts and began rubbing the pads along the patch to try to loosen the sticky stuff. They each worked for a couple of minutes getting the patch off, then Lily unceremoniously pulled her own needle out and handed it to her Mom while Tanner asked if I would take hers out instead of waiting for the nurse. She looked so impressed that Lily took her own needle out and I told her it must be because Lily is eight. “Ohhhhh,” Tanner said, as if that made perfect sense. It was hilarious and reminded me that there are good moments to be found in even the most challenging circumstances.

We were so hoping to find out Tanner’s neutraphil counts had risen to at least 750 today so we could spend Thanksgiving with John’s family, but it just didn’t happen that way. Tanner’s counts had gone up just 60 points since last week and were at just 440. Anything below 500 is considered severely neutrapenic and as Tanner’s nurse said, “I wouldn’t risk it if it were my daughter.” That was all I needed to hear.

Tanner was really disappointed. She burst into tears right there in the clinic and cried several times on the way to the car. But, as always, she found a way to be happy. She and I are going to cook Thanksgiving dinner together tomorrow – something we have never done and she is very excited about. Anyone who knows me knows I don’t “cook” so much as “heat,” so cooking with Mommy is a real treat.

As always, people are so kind to us. Lauren, in John’s office is bringing us a fried turkey, my friend Kim is supplying a pumpkin pie and Ashley is giving me some of her cranberries. That leaves a couple of side dishes for Tanner and I, which I am capable of.

Hopefully, Tanner’s counts will continue to rise and we can start Long Term Maintenance next week. It wasn’t really expected that they would be any higher than the were today; this is just part of this phase of treatment and why they give the kids two weeks off chemo for counts recovery. She probably bottomed out on Sunday or Monday and has just started to climb. No big deal if they aren’t up high enough to start next week, we’ll just wait another week. But, the sooner we start, the sooner she will get to the point where we can have a little more freedom. Freedom is more valuable than gold and diamonds to us right now.

I’m off to blow the dust off a cookbook or two.


A Long Day at the ER

November 22, 2009

Since Thursday, when we went in for clinic and Tanner’s hemoglobin was so low, we’ve been keeping a close eye on her for signs that it was dropping even further or that it was producing symptoms that made her uncomfortable. After asking me to take her to bed at 6:30 last night, she woke up this morning with a headache and was very washed out looking. We decided not to wait until tomorrow to take her to clinic, so John took her to the ER around 11 am.

They arrived home at 9 pm with fresh blood and platelets in her system, tired, but with rosy cheeks and red lips. Her hemoglobin had dropped down to 6.6 from 7.2 on Thursday (anything under 8 is grounds for a transfusion, but Tanner was not showing any symptoms then so we decided to wait) and her platelets were down to 28 (normal is somewhere around 300). So, two bags of platelets and one bag of blood later, she should be feeling a lot better. Her neutraphils have, thankfully, not dropped from Thursday, so hopefully those have bottomed out and will start going back up so she is less vulnerable to infection.

We weren’t surprised or too upset that she needed a transfusion; it’s almost expected during DI and Tanner has really been lucky that this is only her second transfusion since diagnosis. We’re just thankful that she hasn’t caught anything while her immune system has been so compromised the past few weeks.

The anemia didn’t slow her down a whole lot this weekend. Saturday, Jessica, our friend, babysitter and petsitter extraordinaire, came and played with the kids all afternoon while John and I cleaned out the attic and garage and went to lunch together at Puckett’s in Lieper’s Fork. We were playing at the elementary school playground next door to the house when Jessica got there and Tanner never slowed down until Jessica left. They danced, played wii, and pretended all the day long. I think Tanner was just happy to see someone else but John, Jake and I. It’s been a while.

After John and Tanner left for the hospital today, I shaved Jake’s head. He wanted to look like Daddy and Tanner. All those little curls in the trash can. He loved it, though! I thought it was so cute that he wanted to look like them.

Jake's new hairdo

Jake's new hairdo

It looks like it will be another “keep to ourselves” kind of week… at least until Wednesday when we get our next counts check. That will let us know whether we can see John’s family for Thanksgiving or whether we need to keep it simple here at home with just us. It would be great to see John’s family, but either way will be fine; the way I see it, we have a lot to be thankful for.