This is from Tanner:
I’m at the hospital. And my hair is falling out, but I’m very sad. Lily is another girl with leukemia and she is my friend and she gave me her wigs. One is dark brown and very long and is real hair. And the other one is dark blonde but fake hair. And my Mom ordered me this one and it is blonde just like my real hair. Here is a picture of it.
Love,
Tanner
October 21, 2009 Tanner finished this pulse of steroids tonight! Yay! No more until Long Term Maintenance. It is my understanding that steroids affect the kids in all different ways… some get hyper, some get really belligerent, some get super sad. Tanner acts as if she has been run over by a truck. She is just limp— physically and emotionally. Today, I was helping her get to the bathroom and I noticed she didn’t grip my hand at all, she just let it lay in mine… limp.
I am feeling better today. The antibiotics kicked in and I was even able to take off my mask. My friend Beth invited us over this morning to hang out at her house with mutual friend Anna Lynn and her daughter Elise while the two earth mommas were making applesauce (no one even suggested that I participate in that!). It was a great idea because it gave me the opportunity to wear Jake out running on Beth’s acre and a half while Tanner could lie on the couch. Tanner really wanted to go, even though she felt so bad. I carried her to the car and she slept most of the way there. When we got there, I carried her in the house and put her down in a big, comfy chair and she never moved until we left. Just sat in the chair and watched TV and spoke when she was spoken to. Poor thing. Jake did get the expected exercise looking for the geese that were not at the pond and jumping over goose poop (his idea, not mine). Tanner got a change of scenery, but she was wiped out when we left.
Beth and her husband Glenn came over later and made us some yummy shrimp scampi and ate with us. It was a nice day, despite the fact that Tanner felt so lousy.
Now, we just have to wait until the steroids get out of her system. She started to get a stuffy nose and is coughing tonight, so I’m hoping she’s not getting sick. She said it was hard to breathe, which could either mean her lungs have some fluid in them or she could have low hemoglobin, which carries oxygen in your blood.
She is also losing hair by the fistful. At this rate, she may not have any hair by next week. I must have combed big piles of dead hair off of her 7 or 8 times today… it’s heartbreaking. She doesn’t seem bothered by it, but she’s so numb from the steroids, I don’t know if that’s a true reaction or not. I pulled a big hunk off her back today and put it in my jewelry box so later, when she is bald and missing her hair, we can pull it out and remember how beautiful it will be when it grows back.
This is definitely the most tenuous and stressful phase of her treatment besides the first month after her diagnosis. It is every bit as difficult as we imagined it could be. I am worried constantly. Does she look anemic? Is she getting sick? What will this next round of chemo do to her? Will she need a transfusion? How will she handle losing her hair? Will she be able to trick-or-treat? Etc., etc., etc. It’s exhausting. Oddly enough, I’m not normally a “worrier.” But, you would have to be dead not to worry. I’m trying to just look ahead one day at a time… that’s all I can really count on.
Tomorrow is Clinic Day. We’re just going in for counts, so it should be quick unless she needs a transfusion, and then it will be really long (see what I mean by not being able to count on anything?). Hopefully, she beats the sniffles and doesn’t wake up sick. They told us she would likely be in the hospital 2 or 3 times during DI, but surely they didn’t mean all in the first month?
Love,
Beth
October 19, 2009 Yes, it’s me in the mask. Fuzzy picture taken by Tanner, from whom I am trying to keep my throat infection germs. I tested negative for strep, but have some kind of throat thing and the doctor mercifully gave me antibiotics to try to make it go away fast before I give it to Tanner. Hence, the mask. Attractive, no?
The last two infections I have had, Tanner has also picked up. Whether we got it together or she caught it from me I don’t know, but I do know I need to stay away from her until these antibiotics have a chance to work.
As usual, my best friend, Beth, rescued me. She stayed with the kids for many hours today while I tried three different clinics and two different pharmacies to get what I needed. I literally don’t know what I would do without her. My Mom and John’s Mom are lifesavers and so willing to help, but they live 2 and 3 hours away. Beth is always there when I need her. She is family, and my kids couldn’t be any more her niece and nephew if we were related by blood.
Which brings to my point of this post, which is to acknowledge that, in order to survive something like this, you have to let go of your independence and your assertion that you can handle things without any help from anyone else. You can’t… trust me. You need help, and plenty of it. It takes a village to see a child through cancer, especially the kind that lasts 2 ½ years. I know I may not always accept help as gracefully as I should, but please know that it doesn’t mean I don’t appreciate it. I do… believe me. I just don’t want to need it. I think it is part of my desire to have a normal life where I didn’t need people to take care of my kids for days at a time, cook me meals, fold my laundry, etc. I want to do it all myself, but thank God for those of you who realize I can’t and do it anyway. I love you… really.
Tanner is still feeling pretty rotten. Every day she takes the steroids, she retreats a little further into herself and gets a little more limp. She lies on the sofa and watches TV or plays on her computer. If you turn off the TV, she will just lie there and stare into space or doze off. She asked John to take her to bed at 6:30 tonight, but will have trouble sleeping. Last night, she woke up 3 or 4 times, once at 3 am for some “cheesy snacks!” Thank goodness we have the prior experience with the steroids and know this is normal and will go away within several days of stopping. She only has two more days of the steroids, so I think she’ll start coming out of it Friday or Saturday. Then, she is done with steroids until she starts long-term maintenance in a month or so. But, they are a very important part of leukemia treatment and she will take them the first five days of every month for the remaining year-and-a-half of maintenance.
So, we’ll just keep renting movies and letting her lay on the sofa until they start wearing off.
I’m off to bed, hoping the antibiotics will work their magic overnight and I will feel better tomorrow.
Love,
Beth
October 14, 2009
We had a smooth day at clinic today. Tanner was totally nonchalant about having her port accessed and we actually had a pretty good time joking and visiting with all the nurses, doctors and the childlife specialist.
She got a dose of Vincristine and her last dose of Doxirubicin (red chemo, as Tanner calls it), thank God. She handled it really well, though, and was definitely not as sick this afternoon as she has been before. It seems like she acclimates to the chemo over time and it has less and less effect each time. She was very tired, however, at bedtime and her right leg is hurting her, so she was limping.
The biggest blow today was the doctor telling us we could not get a new dog any time soon. He wants us to get several months into long-term maintenance before introducing a new animal into the house. We were under the impression that puppies were the real issue and so we had begun to look at year-old dogs from rescue. Looking for a dog was a great distraction for all of us… it gave us something to think about besides cancer and something fun to look forward to. Tanner was pretty bummed and the doctor said, “You can hate me for it, Tanner; it’s not your Mom’s fault.” She just looked up and him and smiled and said, “I won’t hate you, Dr. Mixan, I’ll just hate the leukemia.”
I think I’m the most bummed of all. I was really looking forward to getting a new dog and I’m just mad that this stupid disease takes and takes and takes from us.
On a more positive note, the Great Pumpkin visited our house today while we were at clinic and decorated the front of our house for Halloween complete with a ghost, spider webs and giant spiders. Thanks, Aunt Kim… we know who you are! Tanner and Jake loved it.
I’m wiped out. I don’t know why clinic days, no matter how smooth, make me so tired. Something about seeing all those little pale faces and bald heads exhausts me. It’s just not fair and it never gets any easier for me to realize how many kids there are with cancer. Some look so sick it just breaks your heart.
Good grief, time to go to bed. This post is getting depressing.
Love,
Beth
October 13, 2009
Tanner and I dropped Jake off at school this morning and, after stopping at Sonic for our usual drink orders, headed to Sweet and Sassy for a haircut. She has been feeling really good the past two days and I wanted to do something special on our day together. Tanner has not had her hair cut since long before she was diagnosed, and it certainly didn’t seem prudent to cut it while it was falling out, but since she has held on to it so well, I thought it could benefit from a little trim to make it look prettier.
Amazingly, the hairdresser told me that Tanner is growing NEW hair. Sure enough, I look and little sprouts of hair are standing up all over her head. How can this be? With as much chemo as she is processing at the moment, how can something be thriving?
Then, I thought about how in some ways, I feel as if we have been standing still for the past 4 ½ months. Waiting… lots of waiting… for doctors, for medication, for the worst of this to be over so we can try to pick up our life and resume some normalcy. But, unbeknownst to me, Tanner has not been waiting… she has been growing. She is too little to understand what this process should be doing to her body, to her life even… so she does the only thing that kids know how to do… she grows.
Her homebound teacher, Mrs. O’Hara, told me yesterday how pleased she is with Tanner’s progress lately. The two of them have found a rhythm that, if anything, is allowing Tanner to progress in her schoolwork at a faster pace than traditional schooling would allow. Her reading is improving by leaps and bounds and she is a spelling demon. At a time when I worried that she would fall behind her classmates, she continues to shine and grow.
I have also noticed a new maturity in the past few weeks. She seems calmer, somehow. Some of the frantic energy that gets her into trouble seems more in check than normal. She seems to be thinking more before acting or speaking. I haven’t had to discipline her in quite some time and it is nice for it to be so peaceful.
So, while I’ve been busy trying to just hang on until Long Term Maintenance, Tanner has quietly moved on with things. I could take a lesson.
I went to a Board Meeting for Jake’s school tonight and it was so nice to talk about something other than cancer. I probably need to make a better effort to keep growing during this time, too.
Over the weekend, Tanner received cards from a 4th grade class at her school and from her own 1st grade class that meant the world to her. To see that she is missed and the kids want her to come back made her light up. She read the cards over and over again, smiling. It’s the first time, I think, that she has felt missed at school.
So, we’re putting last week behind us… it was rotten, but we made it and that’s what counts. I am a firm believer that it doesn’t matter how messy it looks while you’re making it through, it’s the fact that you came out the other side that matters.
Now, I am going to sleep in my daughter’s room… again… because she can’t sleep without the dog. Anybody have a sleepy dog for rent?
Love,
Beth
October 11, 2009
Just when we thought we had gotten through this rotten, unending week, our beloved border collie, Millie, died today. She was 12 and over the past few months, had seemed to be getting old quickly. Today, she suddenly was unable to move and John quietly took her to the emergency vet so as not to upset the kids. The vet said she had several cancerous tumors and one had ruptured causing internal bleeding. John called to say she would only live an hour at best and I piled the kids in car and left a check taped to the door for the pizza guy who was on his way. In the car, I explained to Tanner that Millie was an old dog and had a cyst that was bleeding in her tummy and that the kind thing to do was to keep her from suffering any more.
Together, the four of us said goodbye to our sweet, gentle, Frisbee-loving dog and watching her pass peacefully. Tanner sobbed while Jake patted her and said, “Bye, bye Millie.” This sweet dog slept at the end of Tanner’s bed every night to keep away the monsters and keep a child with an active imagination “safe” at night. She was intelligent, loyal and the model of good doggy behavior. She is already missed.
Sadly, Millie’s passing is just one more loss for Tanner. Millie was her security blanket at night and she has been up 4 times already in the first 2 hours after bedtime. John will go sleep in her room tonight; if I go, I will wake her with my coughing. It was the worst possible time for this to happen (not that there’s a good time for your dog to die) when she most needs comfort and security in what is often a very scary world for her. I’m not sure what we will do.
John is devastated and keeps questioning whether he did the right thing by not opting for a surgery option which the vet said would only give Millie a few months. It would definitely have been nice to have some time to prepare Tanner for her passing. It was just so sudden (it all happened in a matter of an hour) and I think it’s hard not to second guess a decision you feel you made in haste, even if it was the right one.
We’re all tired from the week behind us, with nothing to really look forward to this week.
As John said when I came down from putting Jake to bed, “I want a do-over.” I think he was talking about the dog, but I was thinking about 2009.
Love,
Beth
October 7, 2009
This evening as I stroked Tanner’s head and tried to comfort her until the Zofran and Oxycodone kicked in, I looked down to see two bruises on her thighs where the Peg shots were administered and was reminded of all she has been through in this seemingly endless week.
Those long-dreaded Peg shots turned out to be just one of the many trials this week that have shed some light on why this stage of treatment is called Delayed Intensification. First, there was the pneumonia-ish illness, three days in the hospital, the Peg shots, a breathing treatment that burned her mouth and upset her terribly, the steroids and, finally, back to the clinic today for Vincristine and the nauseating Doxirubicin.
She seemed very tired this morning before going to the Clinic and had a little crying jag about having to take a bath and having to go to Clinic. She wanted me to go with her, which of course I couldn’t, but John’s Mom went with them, so she got to have her E. with her. Clinic went well and she seemed to be feeling pretty well when she got home with her steroid-inspired McDonald’s Happy Meal. But, shortly after eating, she began feeling bad and fell asleep for several hours. When she woke she felt terrible, but we were able to get her nausea under control with medication, so we did better than last time overall. She has figured out that it’s the red chemo that makes her so sick and asked why she had to take something that made her feel so bad. When I explained that we only had to take red chemo one more time, she said looked at me with her pale little face pinched in pain and said she could stand one more time… amazing.
Surprisingly, the steroids have been fairly anticlimactic. She has really handled them well, with minimal mood swings or erratic behavior. The food obsession has kicked in and she wants cheese, grease, fat and more cheese. She literally begged me for McDonald’s hash browns this morning and I found myself at Kroger at 6:30 buying Velveeta for nachos! We finished the last steroid pill this morning and are off them for the next week…. Hurray!
So, now is the really hard part… knowing that we will do it all again next week… and the week after, and the week after. This is a marathon for sure, and there is little time to regroup before the next big hill is upon you.
My poor husband wins the MVP award this week. He has been Mom, Dad, Employee and Nurse this week and has kept his sense of humor to boot. There was a point today where he looked a little like if someone asked him for one more thing little pieces of him might start falling off of him… an ear, an arm, a finger. He just looked too stretched and I felt terrible that when everything was so awful, instead of pulling my weight, I had been just another burden this week. Bronchitis is hard for me to kick and even though I feel better, I still had to lie down for the majority of the afternoon in order to stop coughing.
And, Most Valuable New Recruit goes to John’s mom who rescued us this week, for sure. She has a job and a very busy life and dropped everything in a moment’s notice to help us. I, literally, could not have done it without her. I was down for the count on Tuesday and could not have taken care of Jake that day. Thanks to her, I was able to get the rest I needed.
And, last but not least, to my friends who showed up at my door with food (you know who you are)… what can I say? We are being carried through this journey on the shoulders of those we love and who, thankfully, love us back.
Week one of DI down, seven more to go. Don’t leave us now… we’ll be needing you…
Love,
Beth
October 2, 2009 Tonight, as we crossed the Shelby Street Bridge, I looked behind me and in front of me to see thousands of illuminated red balloons, marching along at a determined pace, sweeping along with them the occasional bobbing white balloon for blood cancer survivors and too many gold balloons marking the loss of a loved one. Among these red balloons carried by those who love and support someone currently fighting blood cancer or someone who has survived and beaten it, somewhere around the middle of the pack, was a white balloon attached to a red wagon carrying a pale, but determined six-year-old propped up on pillows and wrapped in a pink High School Musical blanket. That child was my daughter and I was prouder of her in that moment than I have ever been before.
When I left the house at 5:30 pm to make my way to LP Field and meet up with Team Tanner, she was in my bed having managed to choke down a slice of bread and some applesauce. It was the first food she had eaten since the night before and she looked weak and sick, but was firm on the fact that she and John would meet me at the walk a little later. On my way downtown, John called to say she had thrown up 3 or 4 times and that they would not be coming. My heart sank… she wanted this so badly, had worked so hard to raise this money. While we were still on the phone, John says, “Wait, she’s up and says she’s coming!” We talked about keeping her home, but decided to let her make the call and she and John said they would be on their way shortly.
Tanner arrived, packed comfortably in her wagon, with a tired smile on her face, but happy. She said she felt better and joked and posed for pictures with the team. She never got out of the wagon except to go the bathroom and, even then, I carried her the few steps to and from the port-a-potty, but she never complained, and even perked up enough to, hilariously, eat a barbecue sandwich while being pulled through downtown Nashville by her Dad. She made it on sheer grit, a childlike desire for fun, and a maturity I had never seen her show on this level.
The walk was a beautiful event. The weather was perfect, downtown Nashville sparkled and there was an impressive turnout. I thought I would be a weepy mess, but I only cried once, when we found the luminary that Keith Harper created for her, lit along the side of the road with many others. It said, “Tanner Page, My Hero.” Indeed.
Other than that, it was a mostly joyous event that was too uplifting to make me cry. Even those who were walking in memorial of a loved seemed to be celebrating a life lived well, if not ended well.
Our team was wonderful and perfect, a great mix of our friends, some co-workers, some former co-workers, some church members, and some just old friends. I am glad to have shared this magical night with them… it was special for all of us, I think. Thanks to Robin, Kim, Beth, Glenn, Paula, Rebecca K and Rebecca L, Anna Lynn, Abbey, Amy, Keith, Leslie, Pat, Bobby, Lauren and Larry for walking with us. And, many thanks to everyone who donated; we raised more than $7,500. Larry wins the prize for having travelled the furthest; he hails from New Jersey and had flown in the night before from Maine, just to walk with us. Rebecca K wins the trooper award for walking nearly two miles and standing on her feet for an hour beforehand while 9 months pregnant (I am not worthy…). We are blessed many times over to have such wonderful friends who are carrying us through like the red balloons carried the whites.
We carried adorable signs that Robin made, with pictures of Tanner and slogans like “We love Tanner,” and “Team Tanner Rocks.” I think Tanner realized, for the first time, that she is not alone. That there are lots of people with cancer, that there are tons of people who love her, and that she is never alone in this journey, although she probably feels like it sometimes.
On the way home, I looked into the rearview mirror to see my little girl, asleep with the chain of glow bracelets Anna Lynn had brought her looped over her ears and dangling down, ridiculously. She had joked only minutes before that they looked like earrings, then asked if she could have her nighttime meds when we got home because she was starting to feel sick again. She looked beautiful and strong, even though she was pale and physically weak, and I marveled at her determination.
This is my daughter. And she is fighting cancer tooth and nail.
Love,
Beth
September 30, 2009 Tomorrow will be both a blessing and a curse. It is the long-awaited day of the Light the Night walk for Leukemia and Lymphoma Society, a joyous day we have been really looking forward to. But, it is also the first day of the Delayed Intensification treatment phase, a day we have been dreading.
It will be an odd day, but I think it’s awesome that it will end on the up note with the walk at 7:30 at LP Field.
We are still hopeful that Tanner will be able to come, but there are certainly a lot of hurdles to jump. First, her counts will have to be high enough for the doctor to clear her (we’re pretty confident about this as her counts have been high and she did not have chemo last week). Second, if her hemoglobin has gone down and she has to have a transfusion tomorrow, we will be at clinic for so long, we probably wouldn’t make it. Third, she has to feel like coming (and this is where we may find our sticking point).
Tanner’s first day of Delayed Intensification starts with a bang. The whole goal of this phase of treatment is to ferret out and destroy any insidious little leukemia cells that may be hiding, and for that job, they bring in the heavy artillery. Tomorrow, Tanner will have a lumbar puncture with and injection of methotrexate, an IV infusion of Vincristine and an IV infusion of Doxorubicin, a chemo she has never taken. In addition, she starts the dreaded oral steroid, dexamethasone. We’re hoping with a nap in the afternoon, we can bring the wagon and pull her when she gets tired. She really wants to come. So, we’ll see.
We are so honored by those who have chosen to donate to Tanner’s team. It floors us that we have had to raise our goal not once, but 3 times, due to the overwhelming generosity of friends, family and some we have never met. We have currently raised more than $7,200. I cannot find the right words to thank people enough or to explain what this has meant to us… to have something like this to look forward to.
Our friend, Rebecca Little, has a way with words and best summed up the way this event has made us feel. She said we must feel like the guy on the cell phone commercials with the huge network behind him. Only our network is one of love and support! What a perfect analogy! Every donation, every person signed up to walk, every wish for success, has wrapped us in love and support… and tomorrow night we will literally be surrounded by it. I so hope that Tanner can come. She needs to feel what John and I feel, and I think tomorrow night is the kind of night even a six-year-old can understand.
Thank you is not the right word… I just can’t find one that is adequate.
Love,
Beth
September 29, 2009 It’s a strange title for a post, but I couldn’t think of any other way to sum up our jam packed and super fun day today. We got up this morning and headed to Lily’s house for a play date. You’ve probably heard us talk about Lily before… she is 8-years-old and has pre-b ALL, just like Tanner. She and Tanner had such a good time playing and her Mom, Larisa, and I got to swap stories and share information, so it was good all around. Lily has a little Chihuahua named Rosie that Tanner fell in love with and she spent the rest of the day asking me if we could get one after our dog, Millie dies… thank God the dog can’t understand English.
Larisa took us all, even Rosie, on a ride around their neighborhood to tour some playgrounds and parks in their golf cart. Everyone loved that and it was such a beautiful day. It just felt so good to be out. And, I think it probably felt good for Tanner and Lily to be playing with someone that just “gets it” with no explanation needed. Lily had to take some medicine while we were there and I could see Tanner thinking, “just like me.” Both girls are out of school now, so we’ll try to get together again soon.
We came home after Lily’s house and ate lunch. Tanner got up to go to the bathroom and fell down, then she fell down on the way back… uh oh. Five minutes later, she was sitting on the couch and just began screaming and grabbing her right leg. I could tell she was in great pain and no position we tried to lay her in helped. I ended up having to give her pain killer, which eventually made her more comfortable, but she lay on the sofa and whimpered on and off for the next hour or so. She was supposed to have a dance lesson, but we canceled it. She started having pain in her leg last night and I noticed her limping on it several times today. I assume it’s neurapathy from the Vincristine, but it’s still unsettling as this is the leg that hurt so bad from the leukemia at diagnosis.
The painkiller eventually did it’s job and we went to a friend’s house for pizza and scarecrow making. All the kids stuffed their own clothes and created some very cute scarecrows. It was great fun and Tanner just seemed like one of the girls with these friends who have been so unfailingly good to us. I got a lot of grown-up girlfriend time today too, which I think really lifted my spirits.
Tanner’s six-year-old friend, Leah, held a lemonade stand today to raise money for Light the Night… so, so sweet. We’re taking her proceeds with us to the coinstar tomorrow so we can count it up and make another donation. We’ve raised almost $7,000 thus far, surpassing our original goal of $5,000 and even our second goal of $6,5000. We’re humbled beyond humbled and so hopeful that Tanner will be able to come to the walk and see all those who will be there to support her. I know I will be an emotional mess that night… it’s really just too much to believe people’s kindness. If you see the blond woman mopping her eyes and sobbing at LP Field, it will be me.
What a great day!
Love,
Beth