Category Archives: clinic

Clinic Day # 26

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December 31, 2009

Standing room only in the infusion room at Vanderbilt Children’s today. A run on chemo. I’ve never seen it so crowded. Tanner, Jake and I actually sat on the floor. There were people standing around everywhere. Some parents were actually rude enough to remain sitting while kids needing chemo were left to stand waiting. Crazy.

Tanner’s counts were perfect – in leukemia world, that is. Her neutraphils were at 1,700 (the doctors want them between 1,000 and 2,000 during long-term maintenance). They were at 16,000 on Monday when she went to the ER with a fever. The body is an amazing thing. The good news is that, for now, they’re not raising her chemo levels… AND we don’t have to go into clinic for FOUR WEEKS! Good grief… we won’t know what to do with ourselves.

Everyone seems to be feeling better today. Of course, the steroids should fix that for Tanner. In addition, she got a dose of Vincristine today and will get an oral methotrexate pill tonight. The methotrexate seems to wipe her out the next day and make her feel bad for a little while. So, it probably won’t be the best week, but maybe we’ll be able to play a little tomorrow.

While the nurse was pushing Tanner’s Vincristine into her port, Jake said, “What are you doing to Tanner?” Cari replied, “I’m giving her medicine that will make her feel better.” Tanner said, very deadpan, “It doesn’t make me feel better, it makes me feel crappy.” Well said.

Love,
Beth

Clinic Day #25

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Tanner and I waiting for Jake's Christmas program to start

Tanner and I waiting for Jake's Christmas program to start

December 17, 2009

Hitch up the sled, we’re flying to Christmas!!!! Tanner’s neutraphil count today was 2,750!!!! That’s even higher than it was 2 weeks ago! We were given the all-clear to go to John’s Mom’s tomorrow and to my parents’ next week. We don’t even have to go in for counts next week! Hallelujah!!!!

Tanner and I high-fived and we hugged nurse Carie and then she forbade me to cry happy tears. When we got out of clinic, we skyped John from the hospital lobby; he was at our church with our Children’s Minister and we told them the happy news. You have no idea how I am breathing a sigh of huge relief not mention joy at being able to spend the holidays among family!!!

After hearing the good news, Tanner and I ran for the hospital pharmacy to fill a few prescriptions, grabbed a bite to eat while we waited, and drove at breakneck pace to get to Jake’s Christmas Program at school at 11 am. Thank you Sissie for holding the program for us (we were a few minutes late!). Right when we got there, Jake’s class came in. We were really worried that Jake would pull a repeat of last year’s performance. Last year, he made it through the back door of the church, saw us, burst into tears and refused to participate any further. So, we snuck in the back and hid ourselves from view. No worries… he was a jingle belling maniac! He came into the back door and bolted to the altar where he stood, ringing his bell and waiting for the rest of the class to catch up to him. He stood there, not singing, but ringing his bell with a huge grin on his face. Then, he saw John who had snuck up the side to take video (It’s hard to hide, when you are as tall as John is). He must have yelled, “Daddy!!!” five or six times during the performance and even made some weird noises and funny faces that had the crowd laughing. Tanner and I giggled hysterically. It was such a treat for her to be able to participate in something like that. She was really proud of him and even got to see a few friends.

Jake and Ms. Julie singing Jingle Bells

Jake and Ms. Julie singing Jingle Bells

Amongst our great happiness today, there is one tiny bad thing (why does there always have to be a bad thing?). If her counts stay this high over the next couple of clinic visits, they will have to up her dose of chemo. Not really what we want, if you can imagine. She’s at a 100% dose right now and they can up it to 125% at max, I think. I really don’t relish the idea that she could take more chemo, but they want her counts to stay between 1,000 and 2,000 to assure that they are affecting any leukemia cells that might try to make a comeback.

But, we will cross that bridge when we come to it. Right now, we will joyfully pack, clean the car and get the oil changed, wrap last minute presents and make a cheese grits casserole before we pile in the car tomorrow headed for Jackson, TN. We’ll be back on Saturday night in time to light the advent candles at church on Sunday morning, regroup (do the laundry) and repack to head for Atlanta on Wednesday.

Thank you to everyone who prayed and send well wishes. And, thank you God for recognizing that we couldn’t take any more disappointment.

Love,
Beth

Clinic Day #24

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December 4, 2009

Holy neutraphils Batman!!! Went to clinic today hoping to be over 1000 and found out Tanner had 2000 neutraphils!!! FREEDOMMMMMMMMMM!

We came home after a dose of IV Vincristine and a lumbar puncture with methotrexate under sedation; I was exhausted, but Tanner was raring to go. She went to her best friend Corinne’s house for her family birthday celebration. They ate tacos and ice cream cake and PLAYED. Tanner was indescribably happy. The playdate drought is over, at least for now.

All of Tanner’s counts were great. She had a normal hemoglobin level and her platelets were actually very high. We haven’t seen numbers that high in a while. She started a five-day steroid pulse and oral chemo tonight, though, so the high counts probably won’t last. We will go back to clinic in two weeks (yes, the first time in more than 6 months we haven’t had to go for a weekly clinic visit) to check her counts and adjust her chemo, if necessary. This begins the game of trying to find just the right amount of 6MP and oral methotrexate to keep her counts steadily between 1,000 and 2,000 for Long Term Maintenance.

It felt weird to let her go to Corinne’s house… like she was naked and unprotected. We’ve gotten used to being so careful. It will be so nice to be able to get out and see a movie or even go to the mall at an off time (is there an off-time at the mall during this season?). We are still going to be cautious, though. The last thing we want is to be in the hospital for Christmas.

After an unsteady start, this week has become a good one with lots of things to celebrate. First, there was Santa. Now good counts and some much needed freedom. And, lastly, we have a contract on a house that we are so excited about.

If you’ve been reading Tanner Time all along, you might remember that we had a contract on a house in Brentwood when Tanner was diagnosed in June. The owners were kind enough to let us out of the contract due to the circumstances. Stability was key… and still is, frankly. But, we have a tiny postage stamp of a yard now and have really felt it on the many days when we couldn’t go out to the nearby cul-de-sac and school fields to play because we were afraid to run into other kids. We have been searching for a house with room to romp and found the perfect house with lots of yard and a basement (Tanner loves this) that is on a cul-de-sac. It will mean a lot in days to come to have so much space when we can’t get out.

The house is not in our school district, but Moore Elementary, where Tanner goes, has been kind enough to let her attend the remainder of this year and next year so Tanner can finish treatment before we switch schools. The new neighborhood is just down the road from where we live now, so we will still be close to our Moore’s Landing friends. All these factors were extremely important to us. I think it will be hard when Tanner returns to school. She is a pretty confident kid, but being bald and pale and having a disease other kids can’t even pronounce will test even the strongest self-esteem. She worries about being “different” and is scared other kids will make fun of her. The kids at Moore know about her and have been so supportive and loving. She feels safe there and we are grateful they have understood our situation enough to allow us to do this without making her switch schools immediately.

Tonight, as Tanner went to sleep, she asked me for something good to think about to keep the bad dreams away. I wasn’t stumped this time. I rattled off a whole bunch of things including playdates, our new house, the new dog we’ll get when we get there, going to see Princess and the Frog next week, decorating our Christmas tree, etc., etc., etc.

It’s good to be back.

Love,
Beth

Clinic Day #23

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November 25, 2009

I wish I had taken a picture. Lily, Tanner’s friend who also has ALL, was at clinic today. She, Tanner, Sara (the child life specialist), and two other little girls sat around a table in the middle of the clinic and played UNO. Tanner and Lily were accessed, with tubes hanging out the bottom of their shirts. One of the other kids had an IV pole. It was such a normal scene in the middle of an abnormal situation and was testament to the fact that kids will find a way to be kids, no matter what is going on with them.

When we were getting ready to leave, Tanner and Lily sat next to each other in infusion chairs to remove the sticky patch placed over their ports to keep the needle stable. Lily casually said, “Tanner, do you need some Remove? I have some you can use.” Tanner took the little packets and then both of them pulled up their shirts and began rubbing the pads along the patch to try to loosen the sticky stuff. They each worked for a couple of minutes getting the patch off, then Lily unceremoniously pulled her own needle out and handed it to her Mom while Tanner asked if I would take hers out instead of waiting for the nurse. She looked so impressed that Lily took her own needle out and I told her it must be because Lily is eight. “Ohhhhh,” Tanner said, as if that made perfect sense. It was hilarious and reminded me that there are good moments to be found in even the most challenging circumstances.

We were so hoping to find out Tanner’s neutraphil counts had risen to at least 750 today so we could spend Thanksgiving with John’s family, but it just didn’t happen that way. Tanner’s counts had gone up just 60 points since last week and were at just 440. Anything below 500 is considered severely neutrapenic and as Tanner’s nurse said, “I wouldn’t risk it if it were my daughter.” That was all I needed to hear.

Tanner was really disappointed. She burst into tears right there in the clinic and cried several times on the way to the car. But, as always, she found a way to be happy. She and I are going to cook Thanksgiving dinner together tomorrow – something we have never done and she is very excited about. Anyone who knows me knows I don’t “cook” so much as “heat,” so cooking with Mommy is a real treat.

As always, people are so kind to us. Lauren, in John’s office is bringing us a fried turkey, my friend Kim is supplying a pumpkin pie and Ashley is giving me some of her cranberries. That leaves a couple of side dishes for Tanner and I, which I am capable of.

Hopefully, Tanner’s counts will continue to rise and we can start Long Term Maintenance next week. It wasn’t really expected that they would be any higher than the were today; this is just part of this phase of treatment and why they give the kids two weeks off chemo for counts recovery. She probably bottomed out on Sunday or Monday and has just started to climb. No big deal if they aren’t up high enough to start next week, we’ll just wait another week. But, the sooner we start, the sooner she will get to the point where we can have a little more freedom. Freedom is more valuable than gold and diamonds to us right now.

I’m off to blow the dust off a cookbook or two.

Love,
Beth

Clinic Day #22, the Last Day of DI !!!

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November 18, 2009

photoWhat a day! We celebrated extra large thanks to the kindness of so many people. We started by going to clinic in our Bye, Bye DI !!! t-shirts. The nurses and doctors loved it. We busted into the clinic in full celebration mode and it was great to start the celebration among our cancer compatriots. Everyone in clinic congratulated us and it was actually really fun to go today – lots of hugs all around.

Tanner’s counts, as expected, were very low all around. Her neutraphils (big infection fighting white cells) were at 380 (to give you an idea of how low this is, I had some blood work done last week and mine were at 6,000) so her immune system is every bit as compromised as we suspected it might be and we are very glad we’ve kept to ourselves lately. What we were surprised by, however, was her low hemoglobin level at 7.2. This is the lowest that Tanner’s level has been since diagnosis. I told the doctor before we got counts that there was no way she needed a transfusion because her energy level was crazy. With a hemoglobin level of 7.2, she should have gotten a transfusion, but because she hasn’t been showing symptoms, we decided to wait and see if she recovers on her own or if she starts showing fatigue, blueness or shortness of breath.

I didn’t even notice how low her platelet level was until we got home and she had a little place on her head where she scratched herself. It was bleeding just a little and I put some Neosporin on it. Fifteen minutes later, I noticed it was still bleeding and I thought, “Uh oh.” I checked her platelet level and sure enough she had gone from more than 300 last week to only 58 this week. Yikes! A bandaid solved the problem, but it’s a little weird.

It remains to be seen whether her counts have bottomed out or whether they will come down yet some more. We go back in on Wednesday for counts to see if we can celebrate Thanksgiving with John’s family or if we need to stick to ourselves at home.

This afternoon, we had a surprise visit from Tanner’s friend, Lily, and her mom, Larisa. Lily is 8-years-old and, like Tanner, has ALL. They brought a video and a congratulations card; they know what a milestone it is to get to this point.

Tanner and I sat at the kitchen table and read post after post from Friends of Tanner and Tanner Time. She was so happy to hear from you all. In a way, I think it was the first time she began to understand that this day was a big deal.

IMG_1291After some crazy dancing to our new Roger Day CD, we heard Daddy come home. He brought pizza and a cake and we sat around the table eating pizza and laughing about our day. Then, John got a text message that said, “special delivery on the front porch.” OH MY GOSH!!! It was a party in a box! It was a huge box, decorated on the outside with a huge balloon bouquet, a beautiful flower arrangement, cards, party hats and blowers, a party mix CD, and best of all, a piñata!!! It was from two families who have been such rocks for us. These are the girls who just show up when you need them and who are so thoughtful I know I will never be able to repay them.

So, then the party was on! We ate cake and whacked the heck out of the piñata and let them eat candy after just having huge pieces of chocolate cake. It was a day without description. A day that cancer could not take from us. A day we lived without regard to what comes next. The perfect day.

Thank you all so much. You made a little girl and her family very happy today.

Love,
Beth

Clinic Day #21

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I love this picture of Tanner. I think she looks so at peace with who she is.

I love this picture of Tanner. I think she looks so at peace with who she is.

November 12, 2009 Today was our fastest clinic day ever, which seemed only fair since last week was our longest! Tanner’s counts had dropped, but not terribly. Her neutraphils were down to 900 from 1,100 last Friday, which means she is neutrapenic, but is still so much better than I expected. The chemo takes 7-10 days to drop counts and we started back on the at-home IV ARA-C chemo today, so the doctor warned us that in the next couple of weeks, we should expect to see those counts go down significantly. We will administer the ARA-C at home for the next 3 days and she will continue to take the oral 6-TG until next Friday. The next two weeks, we just go in for counts and to be sure she doesn’t need a transfusion. If her neutraphils are back up to 1,000 at week 3, we will start Long Term Maintenance on Dec. 4. Unbelievable!

The doctor said we will need a couple of months of maintenance under our belts for her to be cleared to return to school. Tanner reminded him that we also couldn’t go back if flu season was bad (she really did!). So, maybe February… that would be such a gift.

After clinic, we went for shrimp scampi at Captain D’s (Have I mentioned her recent obsession with shrimp? It was pizza for a while, now shrimp and I think we might be moving on to chicken noodle soup!) and stopped by John’s office so a few co-workers/friends from out of town could come down and give her a hug. Then, we went to pick up Jake at Aunt Beth’s house. On the way home, she fell asleep in the car and stayed asleep for a while after we got home. She had a playdate with Corinne and Laurel and was tired again at bedtime. Maybe yesterday wore her out!

Anyway, it was a good day and a good clinic visit. Jake continues his cold and I continue to be terrified that Tanner will catch it. Have you ever tried to keep a two-year-old from spreading his germs? Impossible.

Thanks for all the love and support coming our way. We are carried by the love, prayers, good wishes and acts of kindness of friends and family. People never seize to amaze me. Last week, I looked out the window to find my neighbor blowing the leaves off of the front lawn. When he was finished, I went out to thank him and give him a hug. He is a cancer survivor himself and while we embraced he said simply, “I just want to do something to help.” I don’t even know what to say about this and the countless other kindnesses that have come our way. Thank you doesn’t seem like enough.

Love,
Beth

Clinic Day #20

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November 6, 2009 IMG_1255 As always, there is a good and a bad… the good is that Tanner really only felt bad for a portion of today and that was really due to the intense hydration process, combined with no food because of the surgery, which dropped her blood sugar for a while. The chemo didn’t really seem to bother her. Some chemos are that way – the effect is more cumulative or it is delayed – others are instant and she’s sick in the chair. So, that was a more than pleasant surprise.

The bad news (why is there always bad news, too?) is that the day was even longer than we anticipated. We had thought we would be home by about 4 pm, but due to some issues with surgery scheduling, we got off track and ended up staying until nearly 6 pm after having arrived at 8 am. We were the only people left in the clinic with one nurse.

But, overall, I’ll take the long day over Tanner feeling bad from the chemo any day. We watched several movies, played computer games, googled funny animal photos, watched Disney Channel and colored a little.

It’s over and I’m glad.

Love,
Beth9

Clinic Day #18

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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

Clinic Day #17

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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

Clinic Day #15

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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