Category Archives: Allison – play therapist

In the Hospital

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May 1, 2011

When Tanner was diagnosed with Leukemia, I thought it was going to be the most difficult day of my life. But, at least there was a concrete plan of how best to treat her. There were numbers and statistics and protocols based on years of research. And, I knew that nothing any of us had done caused it, and nothing we could have done would have prevented it.

Today is different; and in many ways, worse. Tanner is inpatient at Vanderbilt for a psych evaluation after two tough days that led us to the decision that she needed more help than we, or a visit to Allison, could provide. I don’t want to give a lot of details, because Tanner deserves some privacy as she struggles to deal with a disease that had me reduced to a day full of tears and xanax just last week. If it is more than I can bear sometimes, I think it is not unrealistic to expect that it is more than a 7-year-old can bear sometimes, too.

We are also concerned that her antidepressants could have backfired. Anti-depressants and kids are known to be tricky and the labels on her medicine warn that it can cause suicidal thoughts in children.

She has also had a very rough couple of weeks. I didn’t write about it, again to give her some space to deal with it without others knowing, but since she told her whole class about, I figure she wouldn’t mind. She began losing her hair again last month after her chemo. We were so blindsided; we had no idea that this could happen again. John found her crying on the slide at the playground and she told him that she had known for days that it was falling out, but thought we would think she was stupid for thinking that. Turns out, it happens sometimes. It seemed like an unimaginable cruelty to have it happen so close to the end for her. Like cancer was trying to get in it’s last licks. It stopped falling out after about two weeks and, although she is noticeably thin on top, she still has her hair and it has not happened again after this round of chemo. Still, it was incredibly difficult for her… for all of us, really.

Then, we had my colossal mistake… where I thought her LP a few weeks ago was the last one… only it wasn’t. I don’t think she can really get over thinking maybe I lied to her on purpose. I know I had a rough couple of days after that one and still haven’t really forgiven myself for it, but it is what it is and I can’t do anything to change it.

Then, this week, we sent Jake to my parents for some much needed special time. It’s hard being the “other kid;” the one who doesn’t have cancer. He needed that one on one attention from his grandparents, and I needed some time alone to regroup and reorganize. Unfortunately, in meeting our needs, I think we hurt Tanner. It was very clear to me during the week that she was so sad that she can’t go to her grandparents house alone for special time, and she knows it’s because of the leukemia. Balancing everyone’s needs in this case seemed precarious at best.

Allison believes that Tanner wanted to come to the hospital and did what it took to get herself here. She believes that Tanner’s world felt very out of control and that she feels safe here as an inpatient. I wouldn’t disagree with that, but I also think we could have a medicine issue as well. There is also a plethora of documented research linking traumatic stress disorder and post-traumatic stress disorder to kids who have cancer. I think Tanner definitely could fall into this category.

The psych team will come in the morning to evaluate her and, hopefully, we’ll know more then. This is, by far, one of the most tormenting things I have ever been through. To not feel like there will be a clear plan for how to deal with her issues. To feel like something we did, or didn’t do, could have exacerbated her problems. To know that we most certainly made some mistakes that may have hurt her. It is agonizing and I wouldn’t wish it on anyone.

I know that I can count on you all not to share this information with your children, who might tell other kids at school that Tanner is having these kinds of problems. Children can be cruel, even unwittingly so, and I would die to know that this blog had caused her any more pain than she is already in. The only reason I share this information is 1) because I know people care about Tanner and want to know how she is doing, and 2) because I feel strongly that the only way to end this *&^%$ing disease is for people to know how awful it really is and be moved to give of themselves to help.

I’ll write more when I know more. We are, as usual, blessed by the wonderful people who come running to our aid when we need it, and do not need anything at this point.

Love,
Beth

Clinic Day #48

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March 9, 2011

We were due at clinic this morning for a counts check, since Tanner’s chemo was raised two weeks ago. But, frankly, I think we would have gone in anyway; Tanner’s cold has gotten worse over the past few days. She’s been congested and coughing with no relief from allergy meds.

I hate expecting the worst, but I did. I packed some necessities quietly in my purse, just in case we ended up staying. I figured if Tanner’s counts were really bad, they might keep her, considering the cough and congestion.

Thankfully, I was worried for no reason. Her counts were perfect – 1320 – and they decided she has a sinus infection and gave us oral antibiotics to take. No IV antibiotics, no hospital stay… amen.

On the way home, Tanner was really stressed that we weren’t going to make it back in time for recess at school. She had also been really mad that morning because John and I told her she might not be able to go to school at all today. They were rollerskating in gym class and she did NOT want to miss that important educational opportunity! When we pulled up to our house to run in and get her backpack for school, I told her she had missed recess. She got really mad at me and it suddenly occurred to me… she blames me for lots of this. She BLAMES me.

Because I’m the one who delivers most of the bad news… “You can’t go to Spirit Night at Chuck E. Cheese because you might get sick.” “We need to go to the hospital this morning.” “You have to take this nasty medicine.” “I’m going to have to pull you out of school early… again.” As you can see, I’m a pretty easy target.

After I got back in the car with her backpack, we drove to school and I reminded her that I would be back in a couple of hours to take her to see Allison, the play therapist. Tanner has NOT been happy about seeing Allison lately. When she got out the car at school, she would not talk to me or say goodbye to me.

I got out the car and grabbed her shoulder to turn her to me. She resisted and I squatted down and held both of her arms so she had to face me.

“Do you know how much I love you?” I said. She shook her head. “I love you so much that I would 100 times rather have leukemia myself than to watch you have leukemia.”

Tanner’s eyes widened. I had her attention now. “I would do anything to take this away from you… but I can’t. There is nothing I can do to change the fact that you have leukemia. But you know what I can do?”

Tanner shook her head again.

“I can take the very best care of you that I can. I can take you to the hospital when you need to go, and I can keep you from doing something or going somewhere that might make you sick. I can make sure you take all of your medicine and that we go to see Allison so we get rid of all the bad feelings. This is all I can do; and I do it the best I can. I don’t make us have to go to the hospital or have to take medicine… leukemia does that. Does that make sense?”

“Yes,” she said with some little tears in the corners of her eyes.

“Tanner it hurts my feelings when you are mad at me for these things. I know they stink, but I’m just trying to take care of you. Can you try not to be so mad at me?”

My daughter put her arms around my neck and hugged me hard. She sniffed and said, “Hold my hand while we walk in, okay?”

By the time we got into the school office, she was bright eyed again and eager to get to P.E. for skating. And, when I picked her up just two hours later to go to Allison’s, she did not get mad at me… for the first time in months.

I’m learning that antidepressants don’t keep her from getting mad or frustrated or sad. But, they do make it easier to reason with her and for there to be a better outcome to the conversation. Three weeks ago, that conversation would not have been possible at all. Three weeks ago, Allison said that she saw a miserable little girl who had lost the ability to pull herself out of her unhappiness.

On the way home from Allison’s we saw the biggest and most beautiful rainbow I have ever seen. I told Tanner I thought it meant good luck to see such a huge rainbow. She thought maybe it meant she would stay healthy for Sleeping Beauty. I think maybe it meant there are brighter days ahead… we just have to hang on.

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

One Mile

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April 29, 2010

Yesterday, as we headed to school, Tanner and I talked about the mile run scheduled that morning that is part of her school’s physical education program. Just the night before, she had taken the last dose of a five-day steroid pulse, and just 6 days before, she had a dose of Vincristine. Both things bother her legs and make her weaker than normal, among other side effects.

“You feel okay to run today?” I asked.

“Sure,” she said.

“You know, if you’re too tired, you don’t have to run,” I said.

“No, Mr. Parks says it’s not just a fun run, it’s a test; we have to do our best,” she insisted.

“Well, I know, but I can talk to Mr. Parks if you think you won’t be able to finish. I don’t want you to push too hard.”

“Why wouldn’t I be able to run, Mom?” she asked… innocently… expectantly.

Long pause on my part. “No reason… run like the wind, girl.”

And, run she did. One mile in 13:09 minutes. She ran, joyfully, in spurts, giggling with friends as she passed them or caught up to them. Jake and I ran with her for part of the run and John took video from the side, the only Dad there in a suit.

She ran as if there was nothing wrong, as if there was no reason she shouldn’t be able to, as every child does… with youthful abandon.

I have to admit, I teared up as she crossed the line ahead of some of her classmates. This child with every reason not to run, and every reason to run.

It made me think about the run the year before. I said to John, “She ran faster than she did last year, when she didn’t have cancer.”

But, here’s the thing. She did have cancer when she ran last year. We just didn’t know it. In fact, she limped the last ¼ mile or so, complaining about a pain in her upper right leg; the leg that was so painful when she was diagnosed, and the leg that still hurts her now.

That afternoon, I told Allison, her therapist, how Tanner had run with all that medication in her, all that poisonous chemo eating at her. She smiled and said, “That’s her incredibly strong will. It’s what makes her so difficult to deal with when she really wants something, but it’s serving her well, too.”

One mile. 5,280 feet. Two proud parents. One joyfully determined child.

Love,
Beth

Three Day Weekend

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April 24, 2010

I woke this morning to John and the kids getting ready for an impromptu trip to cheer on the runners in the Country Music Marathon. We know some people who are running, many of them for Team in Training, the Leukemia and Lymphoma Society fundraiser. They had a great time clapping and cheering (Jake really liked the clapping) and then went to cousin Mack’s for a visit.

I stayed home. I would like to say I got tons of stuff done, but I didn’t. I watched the news to see if the marathon would escape the severe storms headed our way and dabbled at the computer. I finally roused myself to go for a quick walk before the rain started when my neighbor’s dog jumped the fence to come with me. They weren’t home and every time I put the dog back in the fence, she jumped back out. By this time, the storm was coming, so I bagged the walk, put the dog in my garage and folded laundry instead.

It was just that kind of lazy day… lots of rain, wind and lightning. It’s beautiful to watch a storm at our new house. There’s a huge tree at the base of our yard that sways mightily in the wind and completely fills the wall of windows in our living room. The creek swells and makes little rapids. Once, we saw a rabbit “swimming” in it. Although, from the looks of it, it was not his intent to be swimming.

So, we lay around, played wii, watched movies, and took naps. Tanner needed the rest, even if she didn’t want it. She was up last night every four hours on the dot, asking for painkiller. The Vincristine was causing her right leg to hurt pretty badly and I actually had to help her to the bathroom. By this morning, she was a little better, and seemed fine by this evening.

Tomorrow, we’re looking forward to a visit from some old friends who are in town running the marathon. We haven’t seen them in many years and their kids will be unrecognizable. Should be fun.

Then, if Tanner can continue her two-day, tantrum-free streak through Sunday, we will go to the end of year Yummies (Young United Methodists) picnic at church.

Is this our new dog? I hope so!!!

Tanner has off school on Monday and we’re going to…. Prison!!!! A trip to meet our potential new dog, Domino. This news feels like a déjà vu, since I think I wrote this exact same thing about a different dog about 3 months ago, right before Tanner’s counts went on a roller coaster ride due to several viruses. A few chemo adjustments and an IgG (antibody) infusion later, we are ready for take 2 on the dog deal. This one feels really right. I had a dalmatian for 14 years whom I dearly loved. But, she was very high energy and I would never get one now that I have two kids, a husband, a house and much less time to wear a crazy dog out. But, this dalmatian is mixed with something mellow, so he might be just the guy for us. Cute and spotty, but much less hyper. I love it.

Tanner’s therapist gave us some really good tools for helping Tanner deal with her anger and anxiety that seem to be working. Also, I think we’re just learning, with Allison’s help, what makes her tick (and what makes her TOCK!). Hopefully, these will result in some lifetime self-soothing skills for her and some solid parenting skills for us. God Bless therapy. One of my cancer mom friends said she thinks they are buying Allison a new house with all this therapy. I think we’re securing her vacation home. But, so be it. Peace of mind is priceless.

Thanks to all who ran and braved the horrible weather at the Country Music Marathon for Team in Training today. There’s a cure for this wretched disease somewhere and, today, we got 26.2 miles closer.

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

Clinic Day #31 — Or, How to Have Fun at Clinic

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April 8, 2010

So, here’s how you have fun at the Vanderbilt Children’s Hospital Oncology Clinic:

1) Have counts high enough to still go to school, but not high enough to raise your chemo level (her neutraphils were at 1,100, down 200 from 2 weeks ago, so she’ll stay at 75% for now)

2) Make friends with the music therapist who is holding a music session in the infusion room. Get her to play your favorite Miley Cyrus and Taylor Swift songs on the guitar so you can have a solo that makes everyone in the room clap. Tell her some other songs you like so you can plan to sing again next time.

3) Participate in a study that helps other people and get money from the doctor so you can buy ice cream downstairs.

4) Discover they are having a “medical play” clinic downstairs in the lobby and color your own “patient” doll which you can then give shots, access her port, set up an IV drip and generally use all your medical knowledge you have gained in your more than 50 visits to the hospital.

5) Get to see Dr. Mixan and Nurse Cari – our favorites

It was, hands down, the most fun we have had at Clinic. It is a testament to Vanderbilt Children’s that it is possible for a place that holds so much sorrow for so many is also the place that holds so much hope and light. We are forever grateful to have this community treasure so close by.

We’ve been on Spring Break all week and having a great time! We’ve been swimming twice, eaten out some, played in the yard and in the cul-de-sac a bunch, had playdates and now, E. (John’s Mom) is here! Tomorrow, we are hosting our church playgroup at our house and having a visit with Allison, the play therapist, in the afternoon. We’re hoping to get to the zoo this weekend to round out our super fun week.

Got some really fun news recently that Tanner is going to be one of the faces of this year’s local Light the Night, which is the Leukemia and Lymphoma Society’s big fundraiser. Tanner’s picture and story are on the invitation being sent to corporations to invite them to a kickoff breakfast. She is also going to be featured in the Country Faces Cancer campaign where country celebrities, like Blake Shelton and Nan Kelley, host walk teams for Light the Night. Tanner will have her picture taken with all the celebs who sign on and be in the TV public service announcements. She will LOVE this! My girl loves her some attention and loves anything to do with music.

So, we’re hanging and enjoying the week off. With her counts down to 1,100, we might rein ourselves in a bit to try to protect her, but overall, the doctor feels good about where she is. During maintenance, the goal is for her counts to be between 1,000 and 1,500, so she is right where she should be, although I’d always prefer to be on the high side, rather than the low.

Hope you’ve been enjoying the beautiful weather, like we have.

Love,
Beth

Clinic Day #30… A Sigh of Relief

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March 23, 2010

Every parent of a child with leukemia lives and dies by blood counts. We wait, tensely, for counts to come back after blood draw. We search the doctor’s face for a sign that counts are good or bad. Will they mean freedom or isolation? Will they mean a blood transfusion? Will they show something worse, something unimaginable?

Today, Tanner’s counts were perfect… in leukemia world, that is. Her neutraphils (big infection fighting white cells) were at 1300 (they want her between 1000 and 1500). Her hemoglobin was 11.2, which means that, for the first time in a long time, Tanner is not anemic.

Dr. Mixan and I agreed that she is probably suffering from allergies, not a cold. So, with no further ado, she got her chemo and I took her to school for the rest of the afternoon. Then, she had a playdate with some friends at our house.

She’ll go to school again tomorrow in the early morning, but I’ll take her out for an hour or so to go see the play therapist. I asked Tanner if she thought she needed to go see Allison and she said, “Yes, Mom.” There have been a lot of adjustments lately with the house and starting school. They are good things, but they are new nevertheless, and probably a little overwhelming at times. A playdate with Ms. Allison is the best medicine for Tanner’s anxiety.

Please continue to pray for Samantha Abbott – the cutest little girl who just went through a bone marrow transplant and has battled kidney failure successfully only to come down with a very serious blood infection. The medication to cure this infection is very hard on the kidneys, so it has presented a dilemma for the doctors.

Every time I think we have it bad, there is always someone who has it worse.

Love,
Beth

The Breaking Point

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December 16,2009

Tomorrow is a pivotal day. We go to clinic in the morning for counts. The results will likely determine the course of our holidays – joyful and with lots of family, or a little less joyful and by ourselves at home. I feel like this will be the breaking point for Tanner… and possibly for me, too. We want — no we need – a change of scenery and a chance to forget about cancer, even if only for a few days. The thing is, Tanner feels really good these days. It’s hard sometimes for me to remember to give her midday medicine because she seems so normal. But, still, we’re reminded every day by the places we cannot go and things we cannot do, that she is not normal. Being able to spend the holidays among family would be as close to normal as we have had since diagnosis. I don’t know how I will console her if her counts are too low to go.

The stress of everything depending upon this count check has definitely gotten to Tanner. She has begun in the last few weeks to act out and has steadily gotten worse. We haven’t seen this type of behavior from her since her stint of acting out after diagnosis. What seemed to help her then, and I believe will help her now, is our play therapist, Allison. It is so weird, but without ever talking to Tanner about leukemia or her difficulties with it, Allison is able to help Tanner work out her feelings through play. She says Tanner is very transparent in her play. Last week, Tanner forced animals and dolls to drink “toilet water,” telling them they had to do it and if they didn’t, she would have to hold them down and make them drink it. I think toilet water is actually a really good analogy for chemo.

Tanner is also anxious about moving. What started out as a really positive thing has turned into a source of anxiety. She is nervous about leaving her friend, Corinne, and about meeting new kids in the neighborhood when she has no hair. She has also started obsessing about the dog we lost several months ago, Millie. She writes her notes and puts them on her ashes urn and talks about her all the time. She is afraid to leave the room I am in and won’t go upstairs without either Jake or me with her. She is still sleepwalking and having nightmares, although she is sleeping better than she was several weeks ago. It’s heartbreaking to watch her self-destruct this way. She is eaten alive by anxiety and it manifests itself in bad behavior.

So, please pray for us in the morning. We need good counts. We need a break. I don’t want to have to tell her, yet again, that we will miss something important to her.

Love,
Beth