Hopefully Our Last Night in the Hospital for a While

photoOctober 29, 2009 So close… so close… just one more night without fever and we can go home! Nine days is a long time and we are all ready for this to be over and so thankful that she has recovered so well.

She felt so much better today with no fever, not even a low-grade fever. We will come home with her port accessed and have to administer IV antibiotics 4 times a day as well as 2 oral antibiotics. They taught us today how to flush her line with saline and use heparin to assure the line stays clear. It’s not rocket science, but still a little unnerving. They’ll teach us tomorrow how to do the IV antibiotic infusion.

She got to dress up today in a costume that the hospital gave her and they handed out Halloween goody bags. The Predators were there and they had a Halloween party downstairs, but Tanner is confined to her room and couldn’t go to any of that. She has not left her room for the entire nine days except to go to a CT Scan. I know she must be sick of looking at those walls.

We had a fun day. In addition to dressing up in the costume, we made some Halloween decorations for the door, had Chik-fil-a brought in by my good friend Melissa, played Wii with the physical therapists and watched some good movies.

Kida from The Lost Island of Atlantis

Kida from The Lost Island of Atlantis

So, barring any unforeseen fevers, we should be home for Halloween… a small miracle and we’ll take it! Now, if we can just do something about the rainy forecast…

Love,
Beth

Finally… A Reason for the Fevers

October 25, 2009 After five straight days of unrelenting fevers, the doctors ordered a CT scan today to determine if she might have a hidden infection that was not showing up in her bloodstream. They found pneumonia in her left lung and believe that is what is causing the fevers, coughing and pain in her stomach and chest when she coughs.

Whew! I know it seems weird to be happy about pneumonia, but she has a better chance of winning if we know what we’re fighting against. I feel a huge sense of relief that there is something we can do about it instead of just watching and waiting. Her fever today reached 104.5, which starts to get scary.

They’re not sure whether or not the pneumonia is a secondary infection from a virus she may have had last week or whether she had it all along, but it progressed too slowly to show up on the two x-rays she had earlier. The CT scan is more sensitive and may have caught something the x-ray couldn’t see.

They had already added another broad spectrum antibiotic earlier today as a prophylactic measure since the one she was already on wasn’t stopping the fevers. So, they’ll give that a day or so to work and decide whether she needs another as well.

So, we’ll probably be here a few more days, I believe. She was really too sick today to be bored. She didn’t really feel like doing much. She mainly watched a Punky Brewster DVD I found at Target, took a big nap and played a little on her computer. She loved getting some emails from people, but I knew she didn’t feel well when she didn’t want to answer them or write a blog post.

On a positive note, her neutraphils continued to come up today… they are at 630, up from 490 yesterday, so we’re making progress.

She has handled herself with more grace than I would have considering how bad she must feel. I’m amazed at the maturity she has acquired through this horrible ordeal and, at the same time, sad she’s had to grow up so fast at six.

Thanks to all of you who sent Vandy email cards to the hospital. They brought them in all printed out this morning and they made her smile.

She’s sleeping soundly and I’m going to try to do the same before someone comes in for something else!

Love,
Beth

Still Hanging in There

October 25, 2009 Tanner’s fevers continue, in fact, they seem to be defying the Tylenol now. Doctors are pretty convinced it’s viral since it’s not responding to antibiotics and her white counts have gone down since yesterday, an indication she is fighting something viral. Her hemoglobin was up a little bit, though and her neutraphils had made a big jump – from 190 to 450!!! Unfortunately, neutraphils fight bacterial infections, which Tanner apparently doesn’t have. So, we’re happy their going up, but they don’t help much in this situation.

She also seems to feel worse today. She was much more lively yesterday. So, I don’t really know where we are… I guess just more watching and waiting.

She and I sat and read all the comments about her new wig and hat today… it really made her smile. Thank you so much to everyone who has been so kind and had such good words of wisdom for her.

Tomorrow, we will get the remaining wispies shaved off of her head. The hospital has an approved hair shaver that, I guess, is extra careful about cutting heads. Hopefully, that will make her head less itchy.

Hopefully, the fever will break soon.

Love,
Beth

Tanner’s New Hair

photoThis 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

Kicking those steroids to the curb

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

We Almost Made It Through Sunday

October 11, 2009dec 08 015 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

Clinic Day #17

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

We’ll See What Happens Tomorrow

October 4, 2009 We’re just sick and tired… or at least I am. Tanner woke up Friday morning still pretty sick and slept for several hours mid-morning while my good friend Shelley took Jake to McDonalds with her little boy to play. By afternoon, though, Tanner was feeling a little better and by evening, it seemed like the worst of the nausea was finally at bay. Saturday morning she woke up feeling good and John took she and Jake bike riding in the morning. In the afternoon, we played on the school playground next to our neighborhood and I was impressed by how far she ran across the field and how much energy she seemed to have. But, she and I both began to cough Saturday afternoon. By Saturday night, both of us were hoarse and coughing quite a bit.

So, all day today, no one got out of their jammies. We played on computers, watched TV, painted our faces and generally took it easy. Tanner had a low fever in the 99s this afternoon and we started getting ourselves ready for a trip to the ER. But, her temperature had returned to normal by bedtime. So, we’ll keep an eye on her and hope for the best.

I can tell you that I had no energy at all today and felt pretty bad. So, I’m assuming she felt the same, but you would never know it. I kept telling John I was going to be pretty embarrassed if a kid with leukemia on tons of chemo kicked a cold that I couldn’t kick, but it may be true! She definitely had more energy than I did today.

We’ve been waiting for the steroids to rear their ugly head, but so far, so good. She’s had three full days and I suspect by tomorrow, we’ll start seeing some effect. For now, though, she’s been very good humored and isn’t eating a ton either.

So, tomorrow is a dreaded day… Peg shot day. I will be interested to see if they even give her the shots considering she obviously has some kind of virus. Even though I dread the shots, I just want to get them over with. I just get sick every time I think of it. It’s one of those moments when I feel like I am lying to her by not telling her about them, and even though I know it makes it easier for, I feel rotten about it. I just will never forget her looking at me and asking, “Why did you let them do that to me?” the last time we had these shots. Hopefully, the anti-anxiety drug we will give her beforehand will make it easier.

I’m not really sure how the chemo given through these shots will affect her. The side effects listed in my childhood leukemia book are numerous, but she was so sick from the leukemia last time she had these shots, you couldn’t tell what came from what. She goes back again on Thursday to receive Vincristine and the Doxirubicin that made her so sick last week. Needless to say, I think this is going to be a very tough month.
So, we need some positive mojo, here… prayers, well wishes, good karma in the universe… all these things. Hopefully, no fever by morning and the Peg shots go as well as possible.

Love,
Beth

Tanner Page… My Hero

IMG_1231October 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.IMG_1228

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

Clinic Day #15

October 1, 2009 After a pretty smooth clinic day, we’re still on the fence as to whether Tanner will be able to attend the Light the Night Walk tonight. She passed the first two hurdles… good counts and no transfusion necessary… but has yet to pass the third… feeling good.

This new chemo, Doxorubicin, she received today has really made her nauseated and she feels pretty lousy. I just gave her a dose of anti-nausea medicine 4 hours early, but don’t know if that will do the trick or not. She’s in my bedroom for a nap and I am hoping she will wake up feeling better. Bless her heart, she told everyone at the hospital today that she was going tonight and is so excited. She told me not fifteen minutes ago that she still wanted to go even if she didn’t feel good. She said we could pull her in the wagon.

Agggghhhhhh. This stinking chemo!

The good news is that her hemoglobin pulled itself back up to an acceptable level without having to have the transfusion. We did have to hold her down again today to get her anesthesia…. She was terrified. The doctor is going to give her some versed next time beforehand to lessen her anxiety. We’re also going to give her some anti-anxiety meds before she has her peg shots on Monday. The Peg shots are two shots given simultaneously in the thighs that are very painful. Tanner is terrified of shots and we won’t tell her until right before they give them to her which means we can’t do any of the numbing cream or ice to help with the pain. Needless to say, I dread Monday.

So far, Delayed Intensification is living up to its name.

Hopefully, she’ll see some of you tonight…

Love,
Beth