March 23, 2011

As clinic visits go, today’s was pretty smooth and easy. Tanner’s counts were high – 2,200—but they didn’t change her chemo. She has, we believe, a sinus infection, which could raise her counts as her body tries to fight it. If her counts remain high next month, they will raise her chemo levels above 100%, so hopefully her counts will come back down before then (seems weird to be wishing for low counts, but the name of this game is low, but not too low).

Tanner has been on antibiotics for two weeks now for the sinus infection with little improvement. We could suspect allergies since it is practically snowing Bradford Pear blossoms here, but allergy medication does not help her at all. So, we will continue on the antibiotics and try some prescription nasal spray as well.

After Tanner got her Vincristine (IV chemo), we went down to the food court for lunch. It was nice to not be in a hurry to get back to school (we’re on Spring Break this week). They had medical play today and both she and Jake just love getting a doll or stuffed animal to play doctor with. The doctor play you see at the hospital is definitely not your usual variety. Most kids just take temperatures and listen to hearts. But, “hospital” kids start IV lines and deliver oxygen through masks. Tanner hooked her doll up to an IV pole and carried it around.

We met a family during medical play that had two children both suffering from a bone disease that causes their bones to break very easily and stunts their growth. They were 7 and 8 and neither one any bigger than Jake. The mother said they have broken around 70 bones each and that the daughter is deaf in one ear because the tiny bones in her ear are broken. They come in every three months for a transfusion of medicine that strengthens their bones. I’m listening to this woman tell the story of these kids and realizing that they will never get better. She confirmed that they will always have this problem. I told her that Tanner has leukemia and that sometimes I feel lucky because at least she will (hopefully) get better and not have to endure any more treatment. She laughed and said every time she is in the infusion room she feels lucky because her even though her kids have a bone disease, at least it’s not as life threatening as cancer. We all count our blessings to our own beat, I guess.

It was a tough day for me. Every clinic visit seems to get a little harder lately. I’m tired of worrying and thinking about sick kids – mine and other people’s. This week hasn’t been such a great week for some local CKs.

Savannah, an 11-year-old with soft tissue cancer that I have been following through friends and on CaringBridge, died this week. She had battled this terrible disease for more than 5 years through 3 relapses and had finally run out of treatment options. We had seen Savannah several times in clinic and she stood out to me for her grace and poise. She and Lily were good friends.

We also saw a family in clinic today that we met early on in treatment. Thomas’ brother was an intern at John’s company and we connected with his Mom nearly 2 years ago in recovery while we both waited for our kids to awaken from sedation after lumbar punctures. Thomas has T-cell ALL, a more difficult to treat type of leukemia than B-cell ALL, which is what Tanner has. Thomas’ age, 16, and the fact that he is a boy, increases his risk, but he has done well on treatment. Now, however, he is having some worrisome symptoms that have doctors checking his bone marrow for relapse. I stood in the hall with his Mom and we hugged and cried a little before they headed down for the surgery. I’ve checked his caringbridge three times tonight hoping for good news, but nothing yet.

Another Vandy kid I follow, Cole, is not doing well either. He has the same type of leukemia that Tanner has, but had a central nervous system relapse last year and is undergoing an unbelievable chemo regimen. He has had unexplained high fevers for a week that has stumped everyone thus far.

Several weeks ago, at a Girl of the Year function, I met the Mom of a little girl named Samantha who died last year after a five-month battle with T-cell ALL, including a bone marrow transplant. She was 7 when she died, which is hard for me to hear, and her Mom, even though she was welling up talking about it, quickly assured me that her leukemia was very different than Tanner’s.

On the way home from clinic, we stopped for gas and I went in to buy some candy for the kids. As I was waiting in line to pay, a photo on the newsstand caught my eye. A little girl with a hat and a surgical mask on was surrounded by smiling girls at a party where they had announced her Make-A-Wish trip to Disney. I didn’t recognize this child, but turns out she is also from Franklin and has the same soft tissue cancer that just took Savannah’s life.

It’s just too much sometimes. It feels like cancer is everywhere and that it will never end. Treatment might end for Tanner in August, but the worry won’t go away. We’ll still go to clinic every month on pins and needles hoping that her bloodwork doesn’t show that the beast is back.

I’m tired of worrying. Of wondering if every little thing is actually a big thing. I’m tired of watching kids lose the battle. I’m tired of choking back the terror when I have to admit to myself that two relatively textbook years of chemo treatment can mean nothing in just one little moment.

Cancer, I hate you with a venom I did not think I possessed. Today you are winning the battle with me, but I have no intention of conceding the war.

Love,
Beth