Category Archives: steroids

Making Lemonade

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March 25, 2011

It’s been spring break this week for both Tanner and Jake. Since Tanner had chemo this week, we didn’t go anywhere, but decided to make the most of our staycation by scheduling a fun activity every day.

Monday, we played in the gorgeous spring weather we were having earlier this week (not so much now!) at a playground with some friends. Tuesday, we went to the Tennessee State Museum. They were having an Egypt exhibit, and Tanner is fascinated with Egypt. Turns out, I think we enjoyed the state history even more. Tanner and I have been reading the Little House on the Prairie books, so it was fun seeing the pioneer history fleshed out at the museum. Tanner kept recognizing things like a butter churn or a yoke for oxen that we had read about in the books.

Jake totally cracked us up because he was making up a story for everything he would see, and tell it in this really serious voice.

“Let me tell you about this,” he would say. “This is boat and it’s tied up and the ropes made it not sail right.”

“Was the boat okay?” I asked.

“Nope, it sank to the very, very bottom of the water with the fish,” he said seriously.

Tanner and I started asking him about everything we saw, just to hear what he would make up.

Wednesday was clinic day, but we made plans to see a movie in the afternoon with friends. On the way home, we stopped to get gas and buy some candy for the movies (yes, I realize that’s against the rules). Unfortunately, when I tried to start up the car to go, it wouldn’t. The kids and I got out the car (in the rain of course) and walked across the street to a Firestone and got them to tow my car, and called John to pick us up. I had seriously had it at that point. But, the men at Firestone were so nice and John was, as usual, like a breath of fresh air. He cheered up the kids and resuscitated me with his infectious enthusiasm. “We’re making lemonade, people!” he yelled in the car. “I never get to see you guys in the middle of the day… I love it.” We went home to let the dog out and then dropped John off at work, still on schedule to make our movie… until Anna Lynn called to tell me it was sold out… really.

Now, I was just mad… until I started laughing. I mean, seriously, what else can you do at this point? I had worked too hard to get us to this stupid movie. Thankfully, our friends were game and we found another movie theater playing the same movie an hour later. We prevailed!!! We filled almost a whole row of the movie theater and the kids laughed out loud at the movie.

Thursday, the kids got a much-needed break from one another with separate playdates. Tanner went to a friend’s house and Jake had a friend from school over. Then, Tanner, John and I went to the Leukemia and Lymphoma Society Man and Woman of the Year campaign kickoff where Tanner was officially announced as Girl of the Year along with Jack Woods, Boy of the Year. They debuted the video we had shot a month or so ago. It’s a great video, although Tanner is uncharacteristically shy in it. This was taken not long before we decided that she needed medication for anxiety. You can see her in this video regressing to babyish talk; very unlike her. Just underscores for me that we made the right decision.

In contrast, last night she was working the room, full extra-large personality in play. The event last night was pretty grown up at a nice restaurant and at one point, John and missed her. We thought she was sitting at the table playing with John’s phone. Instead, we spotted her across the room, standing on a chair, talking animatedly to three men, who were laughing and talking back. Then, the photographer asked to take a picture of them. They did one serious shot and then Tanner got them to all make silly faces. John said, “Should we go ask what she was talking to them about?” I paused and said, “No, I think I’d rather not know.”

Here’s the video:

2011 LLS Boy & Girl of the Year from Nathan Thompson – Disegno Video on Vimeo.

And, today, we had big plans to see the marionette show at the downtown Nashville library. The Whitlers were meeting us there and everyone was excited. The kids were playing on computers in the library waiting for the show to start when we figured out they didn’t have a show today (something I did not see on the Website). But Ron Whitler (Tanner Time’s blog host), who is a long-time friend and from the same school of lemons as my husband, didn’t miss a beat and just said, “We’re game for whatever, let’s go to lunch.” So, we went to Margaritaville and had a great time.

So, I want to thank all the people who helped me make lemonade this week, including Tanner, who has been a trooper despite not feeling very well from steroids, and Jake, who never fails to make me laugh. I am truly blessed by the most amazing friends and family.

Love,
Beth

Better Days

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Things are looking brighter the last couple of days. After lying awake half the night on clinic day night worrying about the crazy amount of medicine that had put in my child in one day, and what the effects of that medicine would be, I woke to a very pleasant surprise… Tanner did not feel all that bad and… was pleasant. For the first time in months, she didn’t fight with me about getting ready for school… she actually smiled and said, “Okay, Mom.” Wow. Seems that anti-depressant works a lot faster than the doctors suspect.

After just three days on the anti-depressant, Tanner is a different child. John came downstairs on Friday night after putting her to bed and said with wonder, “She actually seems happy.” And right then we realized how much anxiety and fear and frustration and anger our poor child had been carrying around for quite some time. All the misbehavior (well, maybe not ALL of it) was really just misery. All the frantic, impulsive, over the top nuttiness was anxiety. I think her unhappiness happened so gradually, we just didn’t realize how bad it had gotten. It didn’t really look like unhappiness; it looked like combativeness. And, mercifully, it’s gone now, replaced with a peacefulness we haven’t seen in a long, long time.

Theoretically, it should only get better. She is on steroids and the extra chemo has set in and she doesn’t really feel all that great and even so, we see an improvement. Also, she is not even taking the full dose of the medicine; we will work our way up to that in a few weeks.

It makes me sad and happy at the same time. Sad to know how much all this has affected her and how heavy her burden has been. But, happy to know this is helping her regain her optimism and her true personality. It’s been a nice couple of days to hope for the best.

Then, today, another gift. Tanner auditioned last night for a part in Sleeping Beauty and today we found out she is going to be… wait for it… Sleeping Beauty (aka Briar Rose and Princess Aurora)!!!!! We couldn’t be prouder and she couldn’t be happier. We are so thankful to Act Too Players for believing in Tanner and giving her this chance. The play is in May… we’ll put out dates as soon as we know them.

Hope your weekend is as going as well as ours.

Love,
Beth

Clinic Day #47

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February 23, 2011

Just finished completely revamping Tanner’s medication spread sheet. It’s a week- long sheet that keeps John and I straight on morning, noon and night meds as well as her as-needed medications. It’s absolutely necessary. You can’t believe how complex it actually is.

But, today, they raised Tanner’s chemo quite a bit. Her counts were high at 2,200, but we’ve all been battling a cold virus for the past week so I didn’t think much of it. But, she’s also grown quite a bit lately and the chemo is calculated by body volume.

It pained me to give her so much medicine tonight… 19 pills and two liquid meds. I felt sneaky while I was getting it all together… like I was trying to put something over on her. But, what good would it do to tell her that they raised both her chemo and her steroids? It would only scare her. I’m terrified about what this will do to her counts. We go back in two weeks to check them. The middle of cold/flu/strep season is not the time to be neutrapenic.

We also got an additional med today – one we hoped to never have to ask for. Tanner was put on an anti-depressant today to attempt to control the anxiety that seems to be eating her up. She has been so agitated lately, has been having troubled going to sleep at night, doesn’t want to go to school in the morning and just seems really frantic. Together with Tanner’s therapist, Allison, we decided to ask Dr. Mixan, her oncologist, for some help for her. The medicine they put her on will take about 4-6 weeks to reach it’s full potential and they gave us some other meds to use, if necessary, in the meantime.

I have mixed feelings about giving her the anti-depressant. On the one hand, I’m relieved that she is getting something that should help her stop spinning – it’s painful to watch her be so angry and agitated. I think it is damaged her self-esteem to have her behavior so constantly corrected. And, frankly, either she needed to be medicated or someone was going to have to medicate me so I could be more patient. It has been a real struggle the past several months dealing with her. She did go to sleep tonight easily for the first time in weeks, so the drowsiness side effect of the medicine might be a real blessing for Tanner.

On the other hand, this is so far removed from anything you would ever hope for your child… a seven-year-old on antidepressants. It’s scary and disheartening, to say the least.

Putting an IV in Tanner's doll

So, having given all this sobering news, let me just say that clinic turned out to be fun today. We had to wait for long time for meds from the pharmacy so we went downstairs to kill some time and they had medical play in the lobby. The kids got to choose from decorating a little doll in a hospital gown or getting a stuffed animal and playing doctor with some real medical equipment. It’s such a therapeutic activity for both Tanner and Jake, both of whom know way more about medical procedures than any child should. Tanner got really into it and played even more when we got home, which is a healthy way for her to express some of her feelings about receiving so much medical treatment.

...and in Jake's bunny!

After playing doctor for a while, we ate some lunch and had some ice cream, picked up our meds and then came home. It made for a kind of long day at clinic, but I think it’s worth it for the kids to have some good experiences at the hospital to offset the not so good ones.

Please keep Tanner in your thoughts this week. Anytime her meds are increased, it takes a while to adjust and she feels pretty bad for a while. This is the most chemo she has ever taken and the highest dose of steroids, too, so I’m sure she’s not going to feel very well over the next week.

We’ve had some really good moments in the past few weeks, too, but I’ll save those for another night when I feel a little lighter and am not so tired.

Love,
Beth

An Army for Hope

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February 2, 2011

I dropped Tanner off half-hour late to school yesterday knowing that she wouldn’t make it all day. The steroids had done her in, but I thought she had a couple of hours in her. As expected, she called me about noon and we picked up a movie and she spent the rest of the day on the sofa.

I didn’t think there was any way she would make it to the Leukemia and Lymphoma Society’s Man and Woman of the Year reception that evening, which was fine. It’s not mandatory that the Girl of the Year be there, but it’s nice for candidates and potential candidates to meet the kids who are inspiring them.

Tanner insisted on going (surprise, surprise) despite the fact that she didn’t feel very good and her legs were itchy (she has been having some kind of allergic issue or something).

The four of us arrived at Cabana in the pouring rain and spent a nice evening with some of the candidates and some potential candidates. We are so grateful to these soldiers of hope for a cure, some of whom have personal connections to the cause and some who don’t. It was good we came because Jack, the Boy of the Year, couldn’t make it and I think it meant a lot to people to meet Tanner. I was asked to tell our story and shared with them the extent of Tanner’s treatment and what she has been through. They were eager to learn and I’ve already made facebook friends with a few who wanted to know more.

I was asked to keep my comments brief, so I decided to tell our story in numbers – in doses to be more accurate. I went back to Tanner’s chemo roadmap in our 3-inch Vandy binder and counted up all the chemo she had received thus far. It took my breath away to see it listed that way. I wanted to share it with you as a testament to the toughness of my girl and of all the kids who endure this brutal treatment and more:

Tanner’s Story in Numbers

25 days inpatient in the hospital
8 ER visits
47 visits to the oncology clinic
3 blood transfusions
5 platelet transfusions
3 antibody transfusions
196 doses of dexamethasone (high dose steroids)
27 doses of IV Vincristine
482 doses of oral mercaptopurine
2 doses of Peg-Asparaginase via simultaneous injections to the thighs
8 doses of IV Cytabarine
1 dose of Cytabarine injected into the central nervous system via lumbar puncture
5 doses of IV methotrexate
15 doses of methotrexate injected into the central nervous system via lumbar puncture
56 doses of oral methotrexate
1 dose of IV cyclophosphamide
3 doses of doxorubicin
13 doses of oral thioguanine

This is, of course, only part of the story… the physical part. The emotional part can’t be put into numbers… it’s too complicated for that. And, Tanner’s numbers are really the best case scenario for a kid with leukemia. Boys would have a whole year more of chemo, and those who are standard or high risk or who have a more difficult to treat type of leukemia would endure much more than this.

It was good to remind myself of what she has been through… to remind myself that she has reason to act cranky sometimes or be angry or frustrated much more than the normal child. To marvel at how often she is not these things… how often she is happy, enthusiastic, excited and joyful.

Like today, for instance. I kept her home from school today. She didn’t feel great and there was some strep in her class that we wanted to avoid. She watched some TV this morning, then decided she would make some valentines for the kids who will be inpatient over Valentine’s day… her idea. She was so excited about it and got out paint, stickers, jewels and markers to decorate them with. She, Jake and I made nearly 30, and Tanner excitedly pulled out the last of her Halloween and Christmas candy and taped pieces to the valentines. She made a special one for Alli, the little 2-year-old who was on the ventilator and is now off, but still inpatient. We’re not due at clinic again until Feb. 23, so we’ll make a special trip in to deliver them. She wanted to go today!

We were so proud of her last night. Proud of how poised she was as adult after adult she didn’t know came to shake her hand. Proud of how she stood sweetly next to me while I read off the list of chemo she had endured, and of how she poked me with her elbow when I got a little teary and reminded me to buck up! Proud of her for just making it through with fierce determination to still find the good things in life. Proud of how her teacher said she did all the work asked of her yesterday at school even though she had to put her head down several times because she didn’t feel good. Proud of her for recognizing that it was important for her to be there last night even though it isn’t really a fun event for kids.

It was a great night to hope.

Love,
Beth

Clinic Day #45

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January 4, 2011

Refreshing to write 2011 on the date line. Nice to enter the actual year that chemo will end for Tanner.

Sorry for not updating for so long. We’ve just been living… like normal people, you know?

Here are the highlights:

A White Christmas in Tennessee

– Christmas was wonderful and relaxed. We stayed right here and enjoyed the snow with John’s family. It was beautiful and peaceful and magical… just the way Christmas should be.
– The children’s Christmas Eve service at church was perfectly imperfect, as always. The kids get to pick a costume to wear and come forward as their part is read about in the reading of the Christmas story. Tanner was an Angel… Jake, after much deliberation and protestation, was a shepherd. Beth and Glenn came home with us and we ate Stromboli and exchanged gifts.
– My parents were planning on coming to our house the day after Christmas, but got snowed out. So, that Wednesday, after clinic, the kids and I piled in the car and headed to their house for “Christmas” with Grandmom and Grandad. We left John at home for a much needed bit of alone, downtime.
– We’ve spent lots of time online and at shelters looking for a new family dog. We’ve found one great candidate, but we’re continuing to look to be sure we’re finding just the right one. If you know anyone who can’t keep their medium to large sized, housebroken, kid-friendly dog, send them our way!

Tanner’s clinic visit last week held very good news… her counts had come down to 1,600 (from 3,700) on their own so we did not have to raise her chemo over 100%! Huge sigh of relief. No one wants their kid to be the one that needs more than 100% dosage to keep counts down. We were terrified that going over 100% would crash her counts and keep her from being able to do Alice in Wonderland and Annie over the next couple of weeks. That would have devastated her.

That was the good part of clinic. The not-so-good part was that they raised her steroid level slightly because she had gained some weight. She normally takes 5 pills per day for 5 days; they raised it to 5 ½ pills per day. As evidence of how unbelievably potent the steroids are, she reacted as if they had doubled her level. She was crazy emotional, tired, would eat like crazy all day only to feel too nauseated to eat at dinner, and now has been having extreme neck and jaw pain for the past three days. We thought the pain might be from the Vincristine (IV chemo), which can cause jaw and face pain. But, today her left cheek swelled slightly, but noticeably, so we think she might have some kind of infection, maybe a salivary gland. She’s also been coughing a lot. After talking with Tanner’s doctor today, we agreed to come in to clinic tomorrow if it isn’t any better. If she develops a fever, we will have to go to the emergency room tonight.

Please send good thoughts for Tanner’s health during these next few months. She will be so crushed if she has to miss either of her plays. Allowing her to participate in Annie, which has a fairly intensive rehearsal schedule, was such a leap of faith for us. We wanted to say no, but knew she really needed us to say yes. Hopefully, her body will cooperate.

Also, please keep in your prayers little two-year-old Alli. She was diagnosed with high risk pre-b ALL (Tanner is low risk) at the end of October and has spent more time in the hospital than out. She is currently in the hospital with a cold, very low counts and a intestinal infection.

Love,
Beth

This Never Ending Week

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August 13, 2010

An important note before you read this post: The news in this post would be very disturbing to Tanner if she knew about it, so I know I can count on you all to keep it on the down low when she is around. She has more than most seven-year-olds to deal with and doesn’t need anything else to be worried about.

I’m eating Key Lime Pie… a big piece. There is nothing else to do at the end of a week like this.

First, the IVig transfusion on Monday, the headache reaction to it on Wednesday, the crazy ativan/LP/runaway saga and then Thursday I get a call from my doctor’s office at 4:20 pm, just 2 hours before the girls are supposed to show up at my house for bunco, telling me that I have thyroid cancer.

I’m not kidding.

Despite the fact that the fine needle aspiration and the initial pathology during the surgery showed no cancer, the nodule had some very slow growing, early stage cancer cells.

So, back to the OR next month to have the other half of my thyroid removed. At this point, they do not think that I will need radiation or anything other than surgical removal. And, they have no reason to even think that the other half is cancerous as well, but I do have a very small nodule on the remaining side and it makes sense to just get rid of it.

Lollipop cancer compared to Tanner’s version. I have no right to complain, really. We caught it very early, thanks to my awesome Internal Med doc, and we’re just going to move forward and do what needs to be done.

Enough about me, this blog is about Tanner. She did get to go to the first day of school, but didn’t make it all day. She got very overheated at recess and couldn’t cool off. I picked her up and after an hour or so, she felt better and I took her back for the last hour. She started her five-day-steroid pulse Wednesday night and they upped her dose because she had gained some weight. It is very easy for John and I to see the effects of the increase. She is acting on day 2 like she usually does on day 4. She was a little out of it this morning and cried some for no reason. We just decided to only send her for the morning and come get her before lunch. But, Tanner wanted to stay for lunch because “I think they are having popcorn chicken.” Too funny. It was a good decision. She is definitely having a harder time than normal with this pulse. She may or may not make it on Monday. It’s her last day of the pulse and the increased dose may wipe her out. It’s sad to me that her first week of school is being marred by the steroids.

I think I also forgot to mention in my last post about the crazy ativan reaction how high Tanner’s counts were – 5,540!!! Holy Moly. We haven’t seen counts like that in a long time. They aren’t sure why they are so high, although she has been coughing some in the morning lately, so it could be a virus. She is still on the 50% chemo dosage and they didn’t change it, but we have to go back in two weeks for a counts check. If they are still above 1,500, they will raise her chemo again.

It’s been a tough week, and I think it will probably be a tough couple of months until the second surgery is over and they get the thyroid medication I will need adjusted properly to keep me consistent. But, we will make it… like we always do.

Love,
Beth

Laughter is the best medicine

P.S. Thanks to my bunco girls who kept me laughing on a night I could have definitely had a pity party. Pity Parties are lonely, but laughing with girlfriends is priceless. And, to my husband who is my rock.

Feeling Better

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May 28, 2010

Tanner slept for 13 ½ hours last night. She woke once for zofran for nausea and once for oxycodone for generally feeling crappy, but awoke this morning feeling pretty good and stayed that way all day. All the same, we slowed it down today. Ran errands in the morning and hung around here in the afternoon, painting and making up Star Wars plays. We ventured outside for about 10 minutes before it rained on us and forced us back inside, which was A-okay. I think some rest was a good idea.

So far so good with the steroids… she usually doesn’t feel bad until about day 3, although generally we’ll see some mood swings and emotional behavior on day two, which will be tomorrow. They’ve upped her chemo again; her counts were at 1700, which is still too high, so they added one pill to her weekly five-pill dose of methotrexate. That puts her at 100% dosage for both 6MP and methotrexate, which is the goal. I don’t expect her to have boatloads of energy or feel particularly well while adjusting to the change, though. Methotrexate seems to have a greater effect on her than the 6MP; in fact, it’s what made her so sick yesterday. Hopefully, she’ll adjust and be feeling good in time for theater camp.

Tanner had strawberries today for the first time in a very long time. She rolled them in whipped cream after dinner tonight and talked about eating strawberries and whipped cream all morning long tomorrow. Sometimes it’s the small things that matter the most.

John and I sat tonight looking at old videos of Tanner and Jake when they were really little. Tanner was so articulate at such a young age that hers are really funny, because you can really understand all the nonsense she is spouting. We laughed and laughed at some of the things she did and then I saw Millie, our beloved and deceased border collie in one of the videos and teared up. Well, once I started I kept on. I sat watching a video of Tanner being hugged by Pluto in Disney world. She is not quite three in the video and has the most beautiful, long blond hair. I found myself crying with my hand over my mouth trying to hold it in. She was so happy and sweet and innocent. John looked at me, puzzled. I just said, “You hope for so much for them when they’re little like that. We just would have never dreamed she would end up with cancer.”

I think, in retrospect, what I was crying about was the innocence of our family at that time. We had so much fun on that trip and we had no reason to ever believe anything but the best would happen for us. Every parent’s worst fear is that something awful will happen to their child. But, for us at that time, and for most people, it is a distant and improbable thought. I think once the improbable becomes reality, you lose an innocence you once had as a parent. Instead, you wake every day thinking that that “awful thing” that once seemed distant, now looms omnipresent in your life. Any day could be THE day, and anything is possible.

Some days, I only think about it for a fleeting moment. Like today, when we were at Sam’s Club eating lunch and Tanner got up to go get some napkins. I watched her as she walked away from our sanitized table and saw her, ever so briefly, drag her hand across another table as she walked by. In that moment, I thought, “Oh please, don’t touch your mouth, please.” Because that germ on that table could be the one her body won’t be able to fight. She didn’t touch her face, and when she returned to our table, I gave her some hand sanitizer and the moment was gone.

Both John and I went through a time when we were mad about that loss of innocence. Mad that we could no longer just send in a donation when we got those St. Jude’s mailing labels and not think about it again until next year. I now see too many children suffering and it is on my mind much of the time. We’re no longer mad about it; we’ve accepted it. But still, it sucks all the same.

I’d give anything to go back to the way I felt at that moment in Disney, but I know I won’t. I know I’ll never look at things the same way, though I look forward to a time when I won’t have to contemplate my child’s life on a daily basis.

Love,
Beth

Clinic Day #33

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May 27, 2010

Some clinic days go well, others don’t. Today… not so much. It was Tanner’s once every three months lumbar puncture where they take spinal fluid to test for leukemia cells and inject chemo (methotrexate) into her spinal column. This is because the Central Nervous System (CNS) protects itself from the chemo injected into her blood stream or taken orally. Therefore, leukemia cells hide in the CNS like devious little monsters and come out when the coast is clear. Injecting chemo directly into the spinal column kills them where they live and, hopefully, prevents the leukemia from coming back. Having CNS leukemia is a serious thing that necessitates some pretty serious “super chemo.”

Tanner hates having the lumbar puncture. It’s not the LP itself, but the fact that she has to be put to sleep that bothers her. It’s the only thing through all of this that she really has a big problem with. She worries about it for days ahead of time and today was one of our worst experiences. She broke down in the pre-op room and held the end of her access line refusing to let them give her Versed to calm her down. We ended up getting them to put a longer line on her port and they hid behind her while they injected her line with propofol so she didn’t know it was coming. Right before she went out, she looked at me with panic in her eyes and said, “It that the sleepy milk?” She could feel it going into her port.

It’s so sad. There’s no reasoning with her about it. I think it’s the place she has chosen to put her anxiety about all of this. She is brave about having her port accessed, about getting chemo, about all kinds of other things, but this is where she harbors the anxiety she swallows from all of it. Thankfully, it’s only once every three months, but next time, we will give her anxiety meds before we leave the house… it seems like the kind thing to do.

She usually wakes up from the propofol pretty well, but didn’t today for some reason. She couldn’t wake up and didn’t feel well. In the car on the way home, she got pretty sick. I assume maybe the methotrexate LP did it. It usually doesn’t make her sick, but IV methotrexate does. Poor thing.

So, not such a good day. Hopefully, she’ll feel better tomorrow. We start steroids tonight… just more fun.

Ughhhh.

Love,
Beth

Happy on the Outside

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April 20, 2010

Tanner at the party

Somehow six days have slipped by again without a post. Let me catch you up: Tanner did get to go to her birthday party at Jump Zone – she had a blast and I wasn’t the only Mom handing out the hand sanitizer. The Dalmatian passed the child-worthy test with flying colors and now we’re trying to work out going to the prison to visit him. If all goes well, we’ll put dibs on him and wait until he finishes training in June! Tanner is feeling well, although she seems a little tired and has had some headaches. John and I got to go on a date on Sunday night for the first time in months. We went to see a movie at the Nashville Film Festival produced by our next-door neighbor. Went to church on Sunday (Jake entertained the church during the children’s sermon by showing another child the inside of his nose…) and then had lunch at the home of some good friends. It was a great day.

Tanner dancing after the party... love the shoes

We got a package from Give Kids the World Village today. That’s the resort for wish kids at Disney where we will be staying. It was so exciting to see all that we will be doing. We get three Disney passes, two Universal theme park passes and one Sea World pass. Not to mention how awesome the Village is itself – putt-putt, horseback riding, a train ride, present fairies, ice cream all day, La Ti Da spa, etc., etc., etc. All the characters from Disney, Universal and Nickelodeon come to the Village to visit with the kids. If Jake sees spider man in real life, he may pass out. If only iCarly would show up… Tanner would need nothing else. I’m hoping this trip will suspend reality for us for a while. We could all use a break from that.

So life is good… why is my child so mad? Tanner is struggling with something that is resulting in massive temper tantrums. Her therapist thinks it is anxiety from the newness of school. That sometimes even really good things can be overwhelming. I think Tanner also tends to push until she is more than exhausted, which doesn’t help. Suffice it to say, I’ve received the brunt of Tanner’s anger and it’s exhausting for all of us. Poor Jake doesn’t understand what he has done wrong to make his sister suddenly turn on him. It’s frustrating to finally be at this good place and see her struggle so mightily with something. It’s like the emotion is too much for her, even though the emotion is happiness. Please pray that I keep my patience and that Tanner finds some peace and is able to fully enjoy this time.

It’s tough to know how to slow Tanner down… how to know when she’s had enough, even if she doesn’t think so. She called today from school with a tummy ache. When I got there with medicine, she was lying down on a bean bag chair while the rest of the class sat at their desks. She looked pretty miserable and I just decided maybe she should come home. She didn’t want to, but I felt the rest might be the best idea. She didn’t stay down long when we got home. After picking up Jake, she wanted to go for a walk. I took the wagon so she didn’t get tired, but on the way home, it looked like we had done too much. Then, the meltdown came over something small and stupid (isn’t that how they always happen?). And, she ended up losing some pretty fun stuff because she couldn’t get hold of herself. It’s just a no-win for everyone and I wish I had a rule book to follow. You know, the rule book for kids who have cancer and who have just returned to school and seem happy, but keep having meltdowns. Anybody seen that one at the book store? Online? Guess I’ll have an extra call with Allison. Sigh.

Thursday is her monthly clinic day. Vincristine through her port and the start of another five-day pulse of steroids (that ought to help the meltdowns, eh?). I’m hoping that if the docs want to raise her chemo they’ll let us wait until after Disney. It would be a huge disappointment to have to postpone the trip due to low counts. I’ve tried not to be specific with the kids about when we’re going just in case.

Hoping for a tantrum-free tomorrow…

Love,
Beth

Heavy

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March 29, 2010

It’s steroid week… always a blast. Tanner is handling it really well, but it just stinks and that’s all there is to it. She is also feeling the effects of her monthly dose of Vincristine. She is having a hard time with her mouth burning every time she eats or drinks anything. I think this is a precursor to mouth sores, but Tanner usually doesn’t actually get the sores and the feeling passes in a few days. This time, however, it’s lasting longer so we’re loading up on the glutamine to try to prevent them from turning into sores. It’s particularly frustrating to her considering the steroids make her really hungry – talk about a catch 22.

She’s actually been pretty active this weekend, though. The good weather, combined with the lure of the kids playing in our cul-de-sac, outweighed the steroid apathy many times this weekend. We flew kites, played baseball, rode bikes and jumped rope. She even made it to school for a couple of hours today and to the play therapist’s for a much-needed anxiety download.

I’ve been a little burdened the last couple of days. The little girl I’ve been writing about, Samantha Abbott, died yesterday morning. She was 7 and such a cute little girl. She was in tremendous pain in the last weeks of her life and her organs finally shut down and gave up. Too much for a child to have to bear and for her parents to have to come to grips with. Just unfathomable.

In addition, I heard through the childhood cancer grapevine about another Vandy patient, a 14-year-old girl, who was just sent home with hospice care. She was given six months at the very best, but has since taken a turn for the worse and it will likely only be days instead of months.

These stories both sadden me and terrify me. They eat at the edges of my hope and deflate my confidence.

As John showed me the text message Sunday morning that Samantha had passed away, we just stared at each other for a moment, eyes wet. It was a three-second moment, but I knew exactly what he was thinking. Then, we choked it down wordlessly and moved on.

What else can you do?

Beth