Ready for School!
Mrs. O'Hara, Tanner's homebound teacher, met us at the door with tears in her eyes
Tanner and Corrinne
1st Day of School… 7 months late
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Category Archives: emotions
Clinic Day #29 — This is a good one!!!!
March 12, 2010
So here’s how my conversation went with Dr. Mixan as we huddled over Tanner’s count sheet yesterday:
Dr. Mixan: “Her counts still look good. Her ANC is 2100.”
Me: “Oh, good.”
Dr. Mixan: “We’re going to bump her chemo up a bit to 75% and see how she does on that.”
Me: “Okay. “ (I pull him away from Tanner and talk quietly) “So, um, what about school?”
Dr. Mixan: “Yes.”
Me: “Really?”
Dr. Mixan: “Really.”
Me: “Really?”
Dr. Mixan “Really.”
Me: “REALLY?!!!”
Dr. Mixan: “REALLY!!!”
Me: “Tomorrow?”
Dr. Mixan: “Why not?”
This is the part where I dissolve into embarrassing Mom tears and hug the doctor. I turn and tell Tanner who is now officially the happiest girl in the world. She spread her joy all over the infusion room and everyone was congratulating her and telling her to have a good time.
So, she’s going to school this morning… for the first day… about 7 months late.
Wow. I’m speechless.
Love,
Beth
We Didn’t Make It
March 2, 2010
We didn’t escape the fever. Tanner developed one this morning and we headed into clinic after dropping Jake off from school. We’re still here. She’s receiving a dose of IV Rocefin (a powerful broad range antibiotic) and then she’s getting an IVIG infusion. That’s the antibody infusion I referred to in my last post. IgG is an antibody that should normally be between 600 and 1,000 in a blood sample. Tanner’s was 478, which is really not especially low for a kid on chemo. The chemo, along with killing cells, kills the antibodies in the blood. But, she has been sick so much, especially with coughs, ear infections and pneumonia, which are indicators of a low IgG level. They hope by giving her an infusion of IgG, she will feel better and her immune system will improve.
The IgG she will receive is compiled from the plasma of up to 100,000 donors, so she will have the combined immunity of lots of people. AMAZING… DOCTORS AND RESEARCHERS ARE AMAZING. Just yesterday, the guy putting the countertops in our kitchen said his wife was a researcher at a local cancer center. I told him to tell his wife we thank God for her and others like her every day.
It’s a little unnerving to have this transfusion; there is a low risk of her having a reaction (much like someone could react to a blood transfusion) and it concerns me that she is receiving a product that is donated by so many people. But, the doctors have assured us the risks are very low, but the possibility of a reward of an improved immune system outweighs any risk.
She feels lousy and is just done. She has broken down in tears several times over small things that wouldn’t normally have rattled her so much. We are tired of being here and tired of the rollercoaster. It’s almost too much for me to bear today, so I don’t know why a six-year-old should have to bear it either.
The nurse just came in and hooked her up for the infusion. Should take several hours and then we will get to go home.
I’m telling you… this is one wild ride.
Love,
Beth
Clinic Day #28
Ahhhh… Good Counts
February 24, 2010
Yay! Tanner’s counts were 3,100!!!! Hallelujah! Now, maybe they’re high enough to fight off the virus that Jake has which is causing fever and coughing.
John took Tanner to clinic today, while I took Jake to the pediatrician’s office. It can’t ever just be good news, huh? Jake has a virus and the trick will be keeping Tanner from getting it. Her counts are high enough that she might escape, but we will be extra vigilant for the next few days.
Spoke to John just a moment ago; Tanner was out of surgery for her spinal with methotrexate and was in the recovery room sleeping it off. They’ve planned on a run to Chili’s to pick up lunch. She hasn’t eaten since 2:30 am this morning; we woke her for peanut butter and jelly.
She will restart her oral chemo at 50% dosage and we return in two weeks for a counts check to see if her counts are still high. If they are, they will raise her chemo dosage to try to get her to stay within the 1-2,000 range they are looking for. If they have come down some, that may become her permanent dosage. It’s the Long Term Maintenance Dance where they try to find the correct dosage to suppress white counts enough, but not too much.
John and I laughed about my bad luck. I didn’t go to clinic with them, where normally, we have to hold down Tanner to get her “sleepy milk” for surgery. She gets very anxious about it and cries and begs me not to let them do it, even when she has Versed in her. But, this time, they had a new anesthesia team who hid the sleepy milk from her and gave it to her without her knowing. John said she drifted peacefully off to sleep with no crying.
I, on the other hand, got to take Jake to the pediatrician where I had to… you guessed it… hold Jake down while they did a strep test and nasal flu test. No escape from the screaming and crying and begging for me!
If Tanner’s counts are good at our two-week check, she’ll be able to return to school…. Hoping and praying.
Love,
Beth
We Need a Break
February 24, 2010
Tomorrow is Tanner’s clinic visit. She will get an IV dose of Vincristine, have a spinal tap with methotrexate and, of course, get counts. I had this hope that she would be high enough that she could at least go into school tomorrow for her class photo. I don’t want her to look at her yearbook and see her whole class there without her. I’m not saying I thought it would really happen, but I hoped it might.
This morning, Tanner has come down with the cough that Jake showed up with yesterday. Of course. It might be fine. Her counts might be high enough for her to fight it off; she’s done it before. Or, it might not be fine. Her counts might take a nose dive again, she might get a fever and have to go to the hospital for antibiotics, she might get pneumonia and become an inpatient. Count on nothing when leukemia is involved.
And, that’s just it. Count on nothing. Hope for nothing. Only I can’t help it. I hope. I just do. I try not to. I tell myself it will end in disappointment. I have learned not to share my hope with Tanner so she is not disappointed too. But, I can’t seem to live expecting the worst. It’s too bleak.
So, I think I’ll be disappointed again tomorrow. I think I will probably not hear that she can go have her picture made with her class. She will not know to be disappointed now, but she will be later when she sees the class photo she is not in.
As one of my cancer mom friends said recently, long-term maintenance is better, but it still stinks. Amen.
Love,
Beth
Her Beautiful Face
February 10, 2010
We’re cooped up and feeling it. That’s all I can say about it without whining and I think I’ve had enough whining in the last few days to last me a lifetime! Tanner feels good and we’re going in for counts tomorrow to see if they are at least on their way up. Her oncologist called yesterday to tell us to stop her oral chemo until her counts come up. He felt they might not rise quickly while she was taking the 6-MP so she’s off of it until at least tomorrow.
Those of you who keep up with us on facebook will have likely seen this picture. I posted it the other day. I can’t stop looking at it. There’s something about it that is so powerful for me. I didn’t ask Tanner to pose for this picture. If you know her, it will not surprise you to hear that she inserted herself into a picture I was taking of the floors in our new house. She ran into the room, saw me taking the picture, threw off her coat and jumped right into the center of the picture. Nothing unusual. She’s a ham, alright. But, I was surprised when I got home and loaded the photo onto the computer.
It’s not her pose… that comes straight out of my People magazines that she sees lying around the house. It’s her face. I expected her to be a little silly, a little put on, with a cheesy grin or a comical pout. But, her face is open and honest. She’s staring at the camera with a confidence and an integrity that takes my breath away. Leukemia has stolen many things from my child, but it will not steal this. It will not steal the strength and courage that I see in that straightforward look… in that beautiful face. No hair to hide behind, but she doesn’t need it. She is a force to be reckoned with.
This is not a child who is afraid. She may have fears, but she is not afraid. She expects the best for herself – you can see it in that look. The way she is looking so calmly at the camera. She’s a superhero. She’s a rock star. She’s GI Jane.
I take comfort in this. I look at her in this picture and know that she will be able to handle whatever comes her way. That she will be an extraordinary woman someday when all of this is just a memory. That the same tenacity and persistence that drives me batty as a parent will be the same determination that allows her to succeed against all odds as an adult. She will have learned it the hard way.
Say a prayer for us tomorrow if you think about it. We’re hoping to hear her counts are on the upswing.
Love,
Beth
School Spirit
January 18, 2010
Last week, Tanner, Jake and I went to Tanner’s school so Tanner could take a literacy test. It was the first time we had stepped foot in the school during school hours since Tanner was diagnosed. We were headed to Mrs. O’Hara’s room (Mrs. O’Hara is Tanner’s homebound teacher and she is AMAZING!) She is a reading teacher so she doesn’t have a ton of kids in her room at once and had us come in during her break so Tanner wouldn’t have to share the room with other kids.
We also planned on putting some money into the Pennies for Patients jars that the school has out in the front of the school. Pennies for Patients is a Leukemia and Lymphoma Society fundraiser for schools and Moore is in the midst of a pocket change campaign in Tanner’s honor. There was a poster of Tanner and five large water jugs full of change, one for each grade. They are having a contest to see which grade raises the most money. Tanner put her change into the first grade jug while Mrs. Green, the principal, snapped pictures.
The week before, the school had announced the campaign with a special announcement in the morning and a showing of a Charlie Brown movie about a little girl with leukemia. It’s a great movie that shows kids what it’s like for a child with leukemia and prepares them for hair loss, absences, etc. So, now, everyone knows who Tanner is. (I’m pretty certain there’s only one bald girl at her school.) As we walked the halls to make our way to Mrs. O’Hara’s room, we passed lots of classes on their way to lunch. You could see the kids react as they realized who Tanner was. They waved, they said, “Hi Tanner,” and a kindergartner even whispered to her, “I gave you a dollar!” Tanner and I laughed because he thought she was getting the money.
A very earnest fourth grade girl stopped in the hallway and said, very sweetly, “I’m sorry you got Leukemia. I hope you feel better soon.” Kids never cease to amaze me with their beautiful honesty.
Tanner was a little puzzled at first by all the attention, but anyone who knows Tanner knows that she loves her some attention, so she was in her element. I was proud of her poise in light of how many kids she didn’t even know were waving at her and smiling and looking at her. She held up beautifully.
A really special moment was when we saw Mrs. Wood and got to meet her fourth grade class. She and her class have been extremely kind to Tanner and they really wanted to meet her. They leave her messages on her blog and two little girls are growing out their hair so they can donate it to Locks of Love in Tanner’s honor. Locks of Love makes wigs for kids who have cancer. They pulled their ponytail holders out to show us how long their hair had gotten. (Thanks Emma and Maggie!)
We’ve been getting wonderful packages all along from the school. Tanner’s class and many others have made sure that she knows she is missed. But, it was entirely another thing for Tanner to be able to feel that love first hand. I have no doubt that we made the right decision about keeping her at Moore after we move and continuing there next year. We are grateful to the school district for allowing us to do that. It will assure that she feels supported and nurtured.
The school also had a used book fair that day and Tanner really wanted to go. I waffled, thinking of how many people would be in a fairly small space. While we had seen a lot of kids on the way in and out of school, we hadn’t really touched anyone and had kept a safe distance. But, I just didn’t want to rain on such a great experience and decided we would risk the book fair. While we were waiting our turn to go into the room, a whole class of what looked to be third graders were in front of us. One little girl turned around and recognized Tanner. It was like a game of “telephone” after that, each kid turning to the next and whispering, “That’s Tanner Page! Do you see her?” They waved, smiled and were extremely sweet. After several minutes, Tanner motioned for me to bend over so she could whisper in my ear. “I think I might be famous,” she said with a look of disbelief. “I think you might be,” I agreed.
A huge thank you to Moore Elementary School for everything they are doing to make Tanner feel special and to prepare the other kids for her arrival. We are so grateful for the money the kids are raising to help find a better way to treat blood cancers. One parent told me her kids are doing chores to earn money so they can put it in the jug. Mrs. Franklin, Tanner’s classroom teacher, has graciously allowed us to invade her class by computer, which I know is somewhat distracting, but we really appreciate it. We hope this week at clinic, they might give her the go-ahead to return to school. She’s ready and cannot wait.
Love,
Beth
Two Doors Down
January 23, 2010
Three women who didn’t know each other 8 months ago sat in a booth at a restaurant and shared secrets they didn’t dare tell anyone else. They shared heartache others can’t understand, and information others don’t need to know. They cried tears of laughter and anguish. They shared a bond both wonderful and terrible. Their young daughters have leukemia; three beautiful girls with a grueling disease that tests their mothers’ stamina and will.
They were glad to be there, but at the same time, wished they weren’t.
Larisa, Amy and I went to dinner at 6:30 and didn’t leave the restaurant until 11 pm. We had much to share and formed a reluctant sisterhood of sorts over pasta and wine. We talked about the odd coincidence of circumstances that brought us together. When Tanner was diagnosed with leukemia, Larisa’s daughter, Lily, was in the hospital with an infection during the Delayed Intensification phase of treatment. A mutual friend emailed me and said I needed to meet them; they were just two doors down from us in the hospital. I remembered my friend talking about Lily. She had showed me a painting a month before that she was doing for Lily’s at-home classroom. I remember thinking how devastating it would be to have a child with leukemia and prayed for her that night. Now, here we were. Lily and Larisa came down the hall the next morning, bringing Lily’s Garden bracelets and soaps and a sweet note Lily wrote for Tanner. I still have it. It says, “This is hard, but I know you can do it. DI is the hardest part.” It is written in red crayon. I also still wear the lavender Lily’s Garden bracelet; I haven’t ever taken it off.
When they stopped by our room, Tanner was in bed, literally panting in pain. I stepped into the hallway so as not to disturb her and knelt down to talk with Lily. She had the face of an angel framed on a sweet, bare head. I told her that Tanner was getting her port put in that day and Lily lifted up her shirt, unceremoniously, so that I could see hers. Larisa gave me a pink sheet of paper, which I also still have, with her name, numbers and email address and an offer to contact her whenever for whatever.
About 2 weeks later, she became a lifeline for John and I. When I called her to ask if Tanner was ever going to go back to being herself after the steroids, she assured me she would. She said it would take about 3 days for her personality to start to show up and she was right. Since then, we’ve become friends and so have Tanner and Lily. We don’t see each other that often, but I know she is a phone call or email away if I need an understanding ear or have a question for someone who has been there.
Five months later, Tanner was in her first month of DI and on her second hospital stay for that month. She had pneumonia, and on about day 8 of our 10-day stay, I got a facebook message from a friend who said a church member’s daughter had just been diagnosed with leukemia and was in the room just two doors down from us. I went down immediately and found them gone to surgery. I left a note with my name, phone number and email and an offer to contact me whenever for whatever. The next day, we met Alex in the 6th floor lobby. Tanner and I met Amy later that day when she stopped in the doorway to say hello. I remember seeing her 3 weeks later, on Thanksgiving morning, coming out of Kroger carrying a bag of bagel bites for a steroid-crazed child and assuring her that she would get her daughter back 3 days after stopping steroids. I recognized the terror in her face as my own when she tried to believe me.
Over dinner tonight, Amy said she, too, had prayed for us before her daughter Madelyn was diagnosed. The mother of a little girl in Tanner’s class at school had lifted her up in Sunday School, a class of which Amy and Alex are members.
Larisa said there had been a “two doors down” family for her, too. Unfortunately, their story ended sadly.
We joked tonight about starting a “two doors down” club for people to pay forward what has been given to them by another, and to share the wealth of medical information that means nothing to most, but everything to a very few.
Thanks, girls. I needed both the laugh and the cry. And, I’m glad we have each other, even though we wish we didn’t have to.
Love,
Beth
Music to My Ears
January 19, 2010
“She is functioning completely normally for a six-year-old girl.”
Wow! I had thought Tanner’s physical strength had improved tremendously over the past month, but never dreamed the physical therapist would say she doesn’t need any therapy. She actually said she was looking for ways to challenge Tanner because her coordination, balance and strength were so good.
You really don’t have any idea how relieved I am. Not just because she didn’t need therapy, but because there is a part of me that has wondered in my darkest place, whether Tanner would ever be physically strong, the way she was before, again. There are so many potential long-term side effects to the medications that Tanner is taking. I don’t worry about them in the front of my mind; they are buried somewhere deep in the place I just can’t go. It’s too much to try to worry about what could happen; what does happen is tough enough to stomach. But, I personally know kids who have avascular necrosis (bone death) and mental processing problems due to the chemo, so I’m certainly aware of the potential problems. There’s also long-term metabolism issues, long term nerve damage, etc., etc., etc.
So, to remove one worry from the dark place makes a little more room for light and hope.
Tanner is strong. Her muscle tone is returning to her legs and arms. She no longer looks like she belongs in an ad for a starving child in a faraway country. She can skip and hop on one leg, walk on a balance beam backwards and do a sit up from upside down. Amazing. It’s wonderful not to think of her as being so fragile.
I have a hard time looking at other kids sometimes without feeling somewhat resentful. They are athletic and bouncy. They have a glow about them and color to their skin. It’s been hard to believe that Tanner would ever look like that again. She still has a way to go. She’s still very pale and low on stamina; I suspect she’ll be that way until August 6, 2011, when this journey will come to an end. But, she no longer looks sickly. And, that’s a relief.
Normal for a six-year-old child. Music to my ears.
Love,
Beth
Bit by Bit…
January 12, 2010
Tanner and Meredith... silly!
I have been trying to take Tanner to see the Princess and the Frog for more than a month. Either her counts were low, she was sick, Jake was sick and home from school or it snowed and Jake was home. Finally, today, we got to go.
We dropped Jake off at school and then ran a few errands, picked up a bagel, and headed to the theater. We were a little late and were really hurrying to get into the theater when I noticed Tanner skipping. Not awkwardly, not lurching to will her body forward and upward, not with one leg having to be slung along to cooperate… just skipping. I caught her reflection in the window of the restaurant we were passing and thought she could have been another child – one without cancer. I said, “Look at you skip, girl!” and she laughed and began running – fast and hard and with joy that she could.
She’s getting so much stronger. She no longer has that emaciated, fragile look she had even a month ago. Her legs look stronger and she is able to walk up stairs without holding onto the rail, get herself off the floor without using her hands and jump rope again.
She’ll hopefully start physical therapy soon to capitalize on this period of time that we have, before she is able to go back to school, to really try to build back some of the strength she has lost. Until now, we didn’t think she had any real chance to make a gain with physical therapy. Any gain she made would have been wiped out by the intense chemo and steroids she was taking. But, now, she has a chance to build some strength that I think she can actually hang on to.
We had a great time at the movie and went to pick up Jake at school. Usually Tanner sits in the car while I go into the church to pick Jake up. I bring in hand sanitizer and soak Jake to his elbows before we get into the car. Today, I let Tanner come in with me. It was the first time she had seen Jake’s classroom or met his teacher after having dropped him off and picked him up from school nearly every week since August. We stood in the doorway and when Jake saw her, he screamed, “Tanner!!!” and ran into her arms. He buried his face in her chest and then looked up to say in disbelief, “You’re here!” Even a two-year-old could recognize a special moment.
When we got home, Tanner’s friend Meredith came to play. Meredith was in Tanner’s Kindergarten class and is also in the 1st grade class she’ll enter when she’s cleared to go to school. The girls put on countless shows, dressed up and played Wii. She had a great time.
It’s so nice to be able to do these things… and to feel like we’re headed for more good things… school, a birthday party, a family vacation.
We still used the hand sanitizer, though. No sense in getting crazy.
Love,
Beth