September 4, 2009 Thank you so much for all the good thoughts and prayers. They seemed to have worked. She woke this morning fever free and feeling much better. I can unpack my bags!
Love,
Beth
Yay!
3
She has a Fever
September 3, 2009
I’m packing a bag for Tanner and I… just in case. After a fun day playing at Aunt Beth’s, she has come down with a low fever. So far, not above 100, but at 100.4, it’s off to the hospital we go. So we’re just waiting… and packing.
So while we wait, you pray. And, I’ll update in the morning.
Love,
Beth
Ten Grays Closer to a Streak
September 2, 2009 Poltergeist was one of the first horror movies I ever saw. I still remember how the mom, played by JoBeth Williams, showed up with a big, distinct gray streak at the end of the movie from the stress of being scared for her children’s lives. I keep thinking, especially on a day like today, that it will be a miracle if I don’t have one of those by the end of this whole ordeal.
Today, Jake knocked his front tooth out. We were, once again, in the cul-de-sac riding bikes and he was on his razor scooter, which he dearly loves. He is a bit young for the razor scooter, but Jake has an uncanny sense of balance and rides it as well as any 5-year-old. I turned to check on him just in time to see the scooter hit a rock, sending him flying over the handlebars, face first. I knew it was not going to be pretty. When I picked him up, his tooth was just hanging from his mouth and he reached up, pulled it out and threw it on the ground… it was every bit as gross as it sounds.
We couldn’t get our dentist on the phone (ironically, two of the hygenists had been by the house that afternoon to bring Tanner a gift and wish her well), but called a friend who is a pediatric dentist who told us there is really nothing you can do as long as it was knocked out root and all, which it was.
Amazingly, he didn’t have any other loose teeth and didn’t cut any other part of his face… must have been a direct hit.
I had a moment when I was sitting on the curb with him, a washcloth pressed up against his mouth to stop the bleeding, when I just thought I would like to go back in time before I had kids and redo things. When I only had to worry about myself. It was a fleeting thought, but in the interest of honesty, I must admit to having it. I think I am about 10 gray hairs closer to that JoBeth Williams streak.
It’s not that Jake losing a tooth is the worst thing that ever happened. I mean, I lost both my front teeth at three after having run into a little boy’s forehead, teeth first. And, 45 minutes after Jake lost his, he was happily sucking on a popsicle and shoving tiny pieces of buttered bread in his mouth. No evidence that the gaping hole where his tooth once was bothered him at all. And, as Tanner happily pointed out while I was still trying to stop the bleeding, “Good for you, Jake. You can put it under your pillow and the tooth fairy will bring you money.”
It’s just that some days, I think I’ve had enough. I’m especially over that sickening adrenaline rush you get when your kids are hurt. I may have a heart attack long before I ever get that gray streak.
But, we get up and move on. People do it all the time. People with much worse problems than mine. A family I read about in the news has one little girl with leukemia and the other with recurring brain tumors. Jake’s tooth seems hardly worth mentioning when I think about that family.
So bring it on. I’m not afraid of a little gray. In the wise words of my 6-year-old daughter, “It’s just hair.”
Love,
Beth
P.S. We are just $25 short of $3,000 donated in honor of Tanner’s Light the Night team. Our goal is $5,000 and we have until October 1 to raise it. Thank you to everyone who has donated and who has volunteered to walk in honor of Tanner that evening. We are deeply touched by these acts on generosity on behalf of our girl. To donate and/or join the team, go to http://pages.lightthenight.org/tn/MidTN09/TeamTanner.
The Vincristine March
September 1, 2009 Have I mentioned how much I would love to hate Vincristine?!!! It is one of the two mainstay chemos that Tanner will take for the entire 2 ½ years of treatment and it is rife with side effects. I have watched it slowly but surely attack Tanner’s leg coordination and strength over the past several weeks and it pains me to watch her struggle to do something that would have been so simple for her just 4 months ago.
Today, after taking it easy most of the day because Tanner seemed a little tired after another bad night of sleep, we got a call from the bike shop saying Tanner’s bike was ready. I had taken it to have the chain replaced after all the aforementioned chain falling off incidents and Tanner was missing it sorely. We loaded scooters, bike helmets and sunscreen into the car and ran down the road to pick up the bike, then drove to our favorite bike-riding cul-de-sac to play with friends.
Tanner and her friend, Smith, rode into the grass field behind the school and then couldn’t make it back up the hill on the bikes, so they got off to push them. Smith topped the hill and I still didn’t see Tanner. I stepped around the trees to get a better look and saw her, way down in the field, facedown with the bike on top of her, motionless. After yelling to Molly to keep an eye on Jake, I took off running down the hill. I saw her move an arm, and then she began trying to get up. It looked slow and painful, but with great effort, she got herself off the ground, but kept dropping the bike back on herself.
I expected her to be crying, but she wasn’t. I pulled the bike off of her and asked what had happened. “I just fell and I was too tired to get up for a minute… it seemed really hard,” she said. “It’s getting harder and harder to walk again, Mom.”
What comforting words can I offer? “Don’t worry it’s just the Vincristine that you will take for the next two-and-a-half years?” “That Vincristine stinks, but it’s saving your life?” “Just a couple more years and things will go back to normal?“ All pretty lame choices, I would say.
She’s six and she loves to run and jump rope and ride bikes and play. But, every week, she looks a little slower and more awkward when she runs. I noticed at her dance lesson the other day that she couldn’t skip… again. We lost that once and got it back when we got a three-week break from the Vincristine.
But, here’s the amazing part… she never stops trying. The other day, we were coming home from the cul-de-sac and I was pulling a wagon loaded down with scooters, bikes, water bottles and Tanner (we like to have a full complement of riding choices). I decided to take a short-cut and head through the grass median to our house. Tanner hopped out and asked if she could pull the wagon. “Sure,” I said, doubtfully. The median is wide and it slopes down in the middle with a pretty steep little hill to get to the street in front of our house. I knew there was no way she would make it up that hill, but she wanted to try.
When she got to the steep part, she dug her feet in and started to pull. At first, she made headway, but then the weight of the wagon pulled her backward and she lost her footing. “Let me push, sweetie,” I said. “No!” she said through gritted teeth. So she pulled… and pulled… and pulled… and fell down… and got up… and pulled some more… and STILL wouldn’t accept any help. Finally, after what seemed like a very long time, she pulled that wagon over the curb and into the street… triumphant and smug.
She’s six and she loves to run and jump rope and ride bikes and play. And, as long as she’s able, we will.
Love,
Beth
Eerily Normal
August 31, 2009 The other night, I said to John, “It’s almost like you could forget there’s anything wrong with her.”
Things have been so normal. She feels really good, has great energy, and has really leveled out emotionally. We’re so grateful. It’s more than we ever hoped for at this point.
She had a dance lesson Friday, which she loved. Played with a friend all afternoon. We went to the zoo Sunday morning before everyone else got there. It was cool and empty and wonderful. She played soccer and ran around a field with friends yesterday afternoon. She’s a little slow and a little awkward when she runs, but she runs, which didn’t seem possible just two months ago when she could barely walk.
John’s reply to my pointing out how pleasantly surprised I am by Tanner’s well-being was that it seemed, “Eerily normal.”
That may seem an odd comment for a situation we are so thankful for, but it struck just right for me.
It seems normal if you could forget about the medicine 3-5 times a day, or her pale skin or her thinning hair. The frequent stomach aches and nausea. The fact that she goes to the bathroom 25 or so times a day or that she wakes up 3-4 times a night.
I think it seems an eerie normal because we don’t trust it. We feel certain it won’t last and behind it lurks the constant worry that any small fever or illness could send her to the hospital immediately.
Today is a good example. After feeling so great yesterday, she woke this morning with a sore throat and joint pain in her legs and feet. I’ve had to help her to the bathroom all morning and I can‘t tell whether the sore throat is from emerging mouth sores or is an infection. See. Eerily normal.
But, overall, we are grateful beyond belief that she is as able as she is. It is so much more than we ever hoped for when we began this journey three months ago.
Love,
Beth
This is Jake’s Day
Jake's first day of school
August 27, 2009 Recently, my hairdresser told me that my hair was falling out, likely due to stress. Tanner overheard me saying this to a friend and asked me tonight what stress meant. I told her it meant that I worried about things.
“What do you worry about?” she asked.
“I worry about you,” I said.
“Because I have leukemia,” she stated. She didn’t ask. She knows why I am worried about her.
“Yes,” I said. “And, I worry about Jake.”
“Why do you worry about Jake?” she asked. “He doesn’t have anything wrong with him.”
“I worry that Jake gets forgotten sometimes,” I said. “It’s hard for him, too, honey.”
Tanner looked puzzled.
“Tanner, did Jake get a present in the mail, today?” I asked. She shook her head. “It was his first day of school today, but it was also your clinic day. Do you think I got more calls and emails about his first day of school or about your counts today?”
“My counts,” she guessed, wide eyed. “Why did people do that? It was mean!” she said, concerned for her little brother.
“No, honey, it isn’t mean,” I said. “Leukemia is a pretty big deal and people want to know how you are doing, because they love you.”
“A bigger deal than a first day of school,” she said.
“Yes,” I agreed. “But, Jake’s first day of school is still a big deal, especially to him. And, I worry that even Daddy and I forget to make a big deal for his stuff sometimes.”
As I said this, I remembered how I had pulled Tanner’s old nap mat out from under a bed the night before and washed it for him to take to school this morning. I had searched for weeks online for that nap mat when I bought it for Tanner, trying to find exactly the right mat, but I had totally forgotten about getting one for Jake and decided at the last minute that Tanner’s hand-me-down would do.
This was a risky conversation I had blundered into; I wasn‘t at all sure I should be having it. I didn’t want Tanner to feel guilty about the situation, but I really thought she might be able to understand that this has been hard for Jake, too. So, I waited with baited breath to see how well she would get my point.
After a moment, she said with a smile, “I’m going to give him some of my presents tomorrow.”
Whew. She understood and she responded exactly as I had hoped she might. She loves Jake fervently and he is fast becoming her best friend. She actually already shares almost everything she is given with him. These days, they often have no one else to play with; and they find ways to cross the age gap between them and find common ground. And they fight, of course, but what siblings don’t?
So, today was Jake’s Day… his first day of school. He was a little clingy when we first walked in, but was fine once he saw a particularly appealing “monster twuck” and didn’t even say goodbye when I kissed the curls on the back of his little head. The note from his teacher at the end of the day said he was “happy and playful.” That’s my boy. He took a nap on his nap mat for the first time and told me the teacher said to “shhhh and cwose my eyes.“ He also told me that Seth was his new “fwiend.” His paper crayon taped to the floor to mark his spot for lining up is “bwue.” Big stuff.
This is Jake’s day. If you want to read about Tanner‘s clinic visit, you’ll have to note the postscript after my sign off. Today, Jake gets to be first.
Love,
Beth
P.S. Tanner had a great day at clinic today. Her neutraphil counts were up to 1300 from 610, so she was able to take both types of chemo today. They reduced her methotrexate dose by 20%, to see if she tolerates it better this time. She was a champ and I was really proud of how brave she has become with all of this. The two chemos really messed with her stomach, though, and we had to stop several times while driving home from the hospital and on the way to pick up Jake for restroom breaks. But, she felt pretty good at bedtime so I’m hopeful she’ll handle this round as well as she handled everything else.
Jake’s Big Day
August 26, 2009 Jake has his first day of school tomorrow! He’s so excited! I had to drag him out of Miss Julie’s room kicking and screaming the other day at orientation, so I think that’s a good sign he likes it. He went to “school” at the same church last year as well, but this year has a new teacher, and he will be doing much more big boy things.
I asked him at dinner what he liked best about Miss Julie’s classroom and he said, “Monster Twucks.” Nuff said.
At first when Tanner found out Jake would be going to school this fall, she was upset. “If I can’t go to school, then Jake can’t either,” she said. But, when I pointed out the fun things we might be able to do without little brother around, she found a way to be happy for him.
I’m proud of her, though, for loving him enough to be excited for him when she is so sad she can’t go to school herself. She is going to help me take his “first day of school” picture tomorrow morning before we drop him off and make our way to the clinic.
She’s also made a lot of progress expressing anger appropriately. She still has her moments, but has managed to be more respectful and calm than she had been over the last month or more. I don’t often notice her trying to pick and fight anymore, and if she does, we just put her in her room until she calms down and that seems to lessen the duration of the problem at least. So, I’m proud of her for this, too.
We’re praying for better counts tomorrow so we can start back on the methotrexate and maybe go over to the school to visit Tanner’s classroom and teacher. They’ve already had some Swine Flu cases there, though, so I don’t know if we’ll be able to go either way. It would mean so much to her, I think, to see the room and her desk there waiting for her. I think she’s having a hard time connecting what is going on there with what she is doing with her homebound teacher. A visit might help, but we certainly don’t want to risk any exposure to the flu.
Tanner’s Light the Night Team has raised $2,125 so far to help in the fight against blood cancers! If you would like to walk with us Oct. 1 in Tanner’s honor, go to http://pages.lightthenight.org/tn/MidTN09/TeamTanner and sign up for Tanner’s Team. All proceeds benefit the Leukemia and Lymphoma Society.
Will post tomorrow once I know any medical updates.
Love,
Beth
Same last name?
Tanner and Jake playing doctor in June
August 25, 2009 It’s amazing to watch a kid internalizing something that is happening to them and then see it show up in their play. I was in the kitchen cleaning up today and heard Jake yelling, “No, no, no!” at Tanner as she was saying, “You have to hold still or it will hurt!” This, in the world of a mother, is grounds for leaping the kitchen bar to see what is going on.
What I found was Jake, lying on the floor with his shirt unbuttoned, Tanner trying to hold him down as she “sliced” him with a pretend scalpel from the doctor kit. After convincing Tanner that she really shouldn’t hold her brother down for pretend medical procedures, I volunteered to let her operate on me instead.
Tanner proceeded, with great aplomb, to surgically implant a port-a-cath into my chest. Well, actually, it was a little closer to my belly-button, but why nitpick?
She then accessed my port with a pretend needle, and with a syringe, proceeded to “flush” my port and administer chemo. All the while, I was supposed to be asleep from “sleepy milk.”
Priceless… both for my memory bank and for Tanner’s mental health. In one playful moment, she turned the tables and became the one in control of all the medical procedures she has endured. Good for her.
This play mimics many of the things that happen to her each week at clinic or have happened to her during her hospital stay at diagnosis. The day after she was diagnosed, Tanner had a port-a-cath surgically implanted into her chest. This is a small, circular port with a silicone bubble on the top and a catheter line that runs from the port to an artery directly above her heart. When she needs anything you would normally receive or give through an IV (blood, medicine, chemo, etc.), she gets it through her port. It allows medicine to get through her body quickly and allows her more freedom than a central line which leaves the IV tubes hanging out of the child’s chest. Every week, when we go to clinic, the nurse sticks Tanner with an IV needle through her skin into her port. That’s how they draw blood to check her counts and how the administer her chemo. Luckily, there is a numbing cream we can put on her port before we go to the hospital that really cuts down on the pain of accessing (and deaccessing) the port.
Last week, she sat at a disconnected computer in my office while Jake and I played foosball and pretended to be the admitting clerk at the hospital. She told me to pretend I was in the ER and she was trying to find me a room. The conversation went something like this:
T: Mam, can you tell me your name?
B: Beth Page
T: What is your son’s name?
B: Jake
T: Same last name?
B: Uh, yes.
T: Your phone number area code first?
B: I give the number, trying not to laugh
T: I’ll need your insurance company
B: United Healthcare
T: And your group number
B: Pause (Now I am laughing and have to take a moment). 51645
T: Thank you, Mam. I’m looking for a room for you and your son. You don’t want to have to sleep in the ER; it’s very noisy here. Just give me a minute. (she types at the computer for a while). Guess what? I found you a room! You’re so lucky!
Too funny… and too awesome. This is exactly the type of thing that lets her process what has been happening to her and shows me that she is accepting this new normal. She is six, but she has it all figured out, thanks to a doctor’s kit and a somewhat willing brother as a patient.
Love,
Beth
Don’t Let the Bedbugs Bite
August 24, 2009 We’re praying for restful sleep tonight for Tanner. She has not slept well for the past four nights or so and it seems to be catching up to her. She keeps waking up, agitated, crying, freezing, burning up, etc. She can’t tell you what’s wrong; she’s usually half asleep and won’t talk to me at all. You would think she has a fever, but she doesn’t. I can’t help but think it’s her body reacting to the poison that is chemo. So, tonight, although I’m not sure it’s the kosher thing to do, we’ve decided to give her painkiller if she wakes up. I think, at this point, sleep is the most important thing.
She has had a cough, but no fever, the last two days. We’re hoping that her immune system will continue to fight off whatever this cough is and we won’t end up in the hospital again.
Having said that, she still feels so much better than we ever though she would at this stage of the game. She is able to do so much more and has so much more energy than we ever dreamed she would. We saw some friends this morning at Pinkerton Park who commented on how great she looks and seems to feel. We are blessed that she has kept her hair thus far and has not had low red blood counts, which cause fatigue, headaches and shortness of breath. The low white counts don’t make her feel bad, just make her susceptible to infection.
Tomorrow is Jake’s open house for preschool. We’ll meet his teacher for the first time and have a chance to explain to the other parents the importance of keeping us informed about any illnesses Jake may be exposed to and bring home to Tanner. If this season turns out to be the crazy flu season everyone expects it to be, we may have to pull Jake out of school temporarily to minimize her exposure. Hopefully, not, though. The little man loves him some school!
Tanner will go to the neighbor’s house tomorrow to play with Corinne’s sister, Laurel. She loves to “Mommy” her. Thursday, Jake starts school for real and Tanner and I will head back to the clinic to try again with the methotrexate, as long as her counts are high enough. Hopefully, they are. As much as you would like to avoid the chemo, it’s obviously important that she gets it. She will receive this chemo again by mouth for 2 years of long term maintenance, so being ultra sensitive to it could be a problem.
We’re still riding bikes, still having picnics, still playing on the playgrounds, still swimming, still learning, still laughing and still living life. We’re not having bad days too often any more, just some bad moments among good days. It’s a different life, but still a really great one.
Love,
Beth
The Energizer Bunny
August 21, 2009 Just a quick post to say, again, that Tanner’s energy never ceases to amaze me. We went letterboxing this morning (thanks to all those sweet people who responded to last night’s post with plans for today… I have the best friends imaginable) with friends and rode bikes for a mile or more, then played on the playground. Tanner wanted to ride another trails that loops around the playground, but I was pooped from running after bikes and we went home. Had lunch, nap for Jake, quiet time for Tanner. Then, Tanner and I danced for a while. Then, she danced some more by herself. THEN, we went swimming at the Whitlers’… for two hours (sorry guys, we had no idea we were there that long). — (cruise director response: y’all can stay all day and all night anytime!)
She got a little sleepy in the car on the way home, but rebounded as we were eating and was chatty Cathy at bedtime.
HOW IN THE WORLD?!!! I was tired and I do not have leukemia.
One of my friends commented on Facebook that Tanner used to have the energy of 5 kids, so on chemo, she probably has the energy of 2. I think she’s right.
One funny side note… Yesterday I was broaching the dreaded task of trying to sort out all the medical bills and match them up with EOB’s. (May I just say, I will never again complain about our insurance premiums. Thank God and Franklin American Mortgage Company for good insurance, a good job and a supportive work environment.) Anyway, I came across a bill from Vanderbilt for the night that Tanner had to spend in the hospital because she had a fever. The charges were $8,700 (for ONE night), but our portion to pay was…. $1.00. That’s right, one dollar. Vanderbilt sent us a bill for one dollar! Too funny. I couldn’t bear to write a check for $1 and waste a stamp on it, so I paired it with another bill and wrote one check for both.
Again, thank God we have good insurance. I read somewhere that average treatment cost for a child with leukemia is over half of a million dollars. After looking at the charges thus far, I can easily believe it will get to that point. I don’t know how a family who is not as fortunate as we are can do this. The financial strain, on top of what you are already going through, must be unbearable.
I said I was going to make a quick update, and I’m already off on a tangent.
Never mind.
Love,
Beth