Category Archives: counts

Clinic Day #53 — Counts Check

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April 28, 2011

Okay, so yesterday was clinic day; I just got too tired to write about it. John took Tanner to clinic yesterday morning to give me a little break from the hospital scene. I wish we could give Tanner a break from it, but guess that’s not possible. Her neutraphil count was up quite a bit, at 2,200, but the steroids she had just come off of will artificially inflate neutraphils, so it’s hard to say what it will be once it comes back down, but Dr. Mixan felt good about it in general so we don’t have to go back for two more weeks.

John broke the news about Cari not being Tanner’s nurse any more in the car on the way there. She was very sad, but handled it as well as we could hope.

Hunting Easter Eggs is exhausting!

I’ve had a bit of a break this week. Jake is at my parents’ house and is coming home tomorrow. It’s given me three days by myself in the house for the whole time Tanner is at school. I really needed a little time to regroup and get some things done. It’s been nice to just go at a project without worrying about picking Jake up from school or being interrupted 1,000 times. Thanks to my parents for taking him; he’s having a ball playing golf and being spoiled. Nice for him to get a little break from the stress of our house as well. I miss him though, and am ready for him to come home.

Tanner and I went to a champagne toast at Flemings on Monday for the LLS Man and Woman of the Year Campaign. She didn’t really feel super as it was the last day of her 5-day steroid pulse, but we gamely went out and bought new dresses and headed downtown. I’ve been so proud of her at all these events; she’s really risen to the occasion and showed a lot of grace and poise at what have been very adult events. I think she understands how important this commitment is (and it doesn’t hurt that I’ve bought her a new dress for almost every event!).

People sometimes make the comment to me, “I don’t know how you all do it.” And, most of the time, I respond by saying, “You just put one foot in front of the other,” which is true. I mean, really, what choice do you have, really? But, I was reminded at the MWOY event the other night, that you really are carried through this journey by great friends, family and even people you don’t know who support you and love you through it.

There are 13 candidates for Man and Woman of the Year. Some of them have a personal connection to blood cancer and know first-hand how important it is to find a cure. Some are just caring people who have recognized a great cause and are giving enough of their time and energy to agree to take it on. Either way, they are supporting us and all the other families who have, unwillingly, embarked on the road to beating a blood cancer. Their commitment is an inspiration to me; it makes me realize we are not alone. There are lots of people who care and who recognize that this disease needs to be eradicated before it affects even one more family. To say we appreciate what they are doing is an understatement; frankly I don’t really know to thank them properly.

We spent Easter with our church family... and then John's family

Tanner has been feeling really good lately. The reduced chemo level she is on because of her low counts last month is evident. She’s only on 50% dosage at this point. Although I love that she’s feeling so good, it makes me nervous for her to just be on 50%. I assume if her levels are good next visit, they’ll raise her up to 75%. We’re delaying her next chemo a week to accommodate her Sleeping Beauty shows. She would have had chemo two days before her first show and been on steroids for all three shows. Dr. Mixan was nice enough to let us delay a week until the show is over and school is out so she won’t miss any of the end of school fun.

Speaking of Sleeping Beauty, if you want tickets but haven’t gotten them yet, you can order them by calling the Boilerroom Theatre at 794-7744.

Love,
Beth

Clinic Day #52 — a Colossal Mistake

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April 20, 2011

Of all the stupid mistakes to make. We went to clinic today for Tanner’s Final Spinal… only it wasn’t. There’s one more. But, somehow, I miscalculated the dates.

Wouldn’t be a huge deal except that Tanner has such anxiety about these LPs. So much so, that she actually had a pretty serious panic attack last night. She handled herself beautifully today, though. When we figured out the mistake I had made, she was initially upset, but forgave me quickly and we kept her very occupied with some new games downloaded to John’s iPad and Sara, the childlife specialist, who comes with us each time to help distract her and make things easier for her. Such wonderful people.

We celebrated my mistake with a cake that said, “Happy next to Final Spinal” on top. All you can do is try to make the best, right?

Tanner’s counts were down some… her neutraphils were at 780, which is neutropenic, but not severely so. Dr. Mixan felt like since we’re past flu and cold season, she could still go to school, but we’re a little nervous about that. She has off Friday and Monday anyway, so we will probably just keep her home tomorrow and hope she recovers some. We’ll go in for a counts check again next Wednesday to see if she’s come up any.

We found out some very sad news today. Both Tanner’s doctor and nurse are leaving. Dr. Mixan is a third year fellow and took a job in Chatanooga. He will be leaving in July and we will need to select another doctor to guide us through the rest of this journey. And, Cari, Tanner’s nurse who has been with us since the beginning of treatment, is changing jobs within the hospital. While we may see her from time to time, she will no longer be our regular nurse. We opted not to tell Tanner this today considering she was already anxious. This will be a big blow to Tanner. The bond between nurse and child in the clinic is really not to be underestimated. There is a real trust and love there and Cari had tears in her eyes when she told me she was leaving. Tanner will have a hard time with the transition and I hate that both of them are leaving at essentially the same time. We’ll let Cari tell her in her own way when we come in for counts next week and hopefully, we’ll bond with another nurse quickly, but both Cari and Dr. Mixan will very hard to replace.

Tanner will be on the Channel 5 news in the next few days. They were doing a segment on Eli, the three-legged therapy dog that visits the infusion room regularly. The kids love him and they interviewed my oh so shy child about having the dog in clinic. I’ll let you know when it is going to be on.

I’m going to bed now. Between the storms we had last night and the fact that Tanner and Jake were both in bed with me at some point last night, I got little to no sleep. And, clinic day with an LP is a long, exhausting day. So, I’m whipped.

Love,
Beth

Clinic Day #51

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April 13, 2011

We got to meet Champ at Medical Play!

We really didn’t expect Tanner’s counts to come up to 1,000 or above today. Generally, counts below 500 take a while to come back up so we were genuinely surprised when Tanner’s neutraphils came back at 1,040 today!!!

I told Tanner, we high-fived in celebration and then she immediately asked, “Can I make to school for recess?” Too funny.

We missed recess, but we did high-tail it back in time for her to spend the afternoon happily at school. At pick-up, she bounced to the car with a big smile on her face and asked if we could play outside when we got home… which we did.

We got to see one of Tanner’s all-time favorite nurses today, too! Blaire was Tanner’s ER nurse that first touch-and-go night when she was lifeflighted to Vanderbilt two years ago. Then, she happened to also be our nurse when we first heard in the ER that Tanner probably had leukemia. Traumatic situations make for tight bonds. Blaire is now a advanced practice nurse in the ER ICU, so we haven’t seen her in a while (thankfully). We loved seeing her; she still keeps up with Tanner through Tanner Time.

Tanner and Blaire in 2009

So that’s the good news… here’s the part that keeps me from celebrating too much, though. We started back at 50% chemo dosage today and go in next Wednesday for her monthly IV Vincristine and a lumbar puncture with methotrexate… her Final Spinal. No rest for weary bone marrow, I tell you. Makes me a little nervous to pile so much chemo on as soon as her counts recover, but this is how cancer treatment works. You don’t stop for much of anything. Call us cautiously optimistic.

Many of you have been asking about Sleeping Beauty tickets. They went on sale today. You can get tickets by calling the Boilerroom Theatre in Franklin at 615-794-7744. The shows are on Saturday, May 21 at 3 pm; Sunday, May 22 at 7 pm; and Monday, May 23 at 7 pm. The theater is tiny (holds about 120) so call quickly for tickets. You’ll want to arrive at the theater ½ hour before to get a good seat. I must ask, for fear that we might sell out the theater with Tanner fans and some poor parent might actually miss her kid in his premiere, for you to please consider one of the evening shows. The matinee is very popular with families.

Thanks to everyone for the good mojo!!!!

Love,
Beth

Counts Update

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April 6, 2011

Tanner’s counts finally came in late last night. Her neutraphils are 390, which is better than we feared, but still severely neutropenic. Dr. Mixan called this morning and her IgG level was also low (that’s an antibody associated with respiratory immunity). So, we’re headed to clinic this morning for an IVIG transfusion. We’ll also hold all chemo until next Wednesday when we’ll go in for a counts check and see where we are. No school and neutropenic precautions until her counts are back up.

Tanner slept really well last night and feels good this morning, although she is still coughing. The IVIG transfusion might help her kick the virus she is fighting so we’ll hope for the best.

Glad the waiting is over… I hate waiting. Thank you for all the prayers and good wishes.

Love,
Beth

Clinic Day #50 — unexpected

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Clinic Visit #50 – Unexpected

April 5, 2011

Tanner has been coughing for what seems like months. She does have a “habit cough,” which is just what it sounds like, a habit. But, she has also struggled with viruses or allergies or something that has caused congestion and extra coughing. She took antibiotics for two weeks last month for a sinus infection and we thought we had it licked, but this weekend, she started coughing again with a vengeance.

When she woke up yesterday morning, she wasn’t coughing and I thought maybe it had been allergies and sent her to school, but got an email from the teacher saying she had coughed all day and it didn’t sound like her regular cough.

We got up this morning, dropped Jake off at school and Tanner and I headed into clinic to check it out. When we got there, the doctor couldn’t see us until later in the afternoon, so we trekked back home and came back again later with Jake in tow.

Thankfully, her lungs and ears were clear, so they just suspect a virus of some kind, but when her counts came back, her total white cell count had dropped by 2/3 from just two weeks before and her hemoglobin was down lower than it has been in almost a year. The machine count did not pick up any neutraphils at all, which can either be a mistake or mean her neutraphils are wiped out. Neutraphils are the big infection fighting white cells and without them, you have no real immune system. They’re doing a hand count on her neutraphils and as of yet, haven’t gotten the results yet. So, we held her chemo tonight, just in case and have holed up in the house assuming the worst for now.

I checked Tanner’s lab results for the past year and half and her white cells haven’t been down to 1,000 in more than a year. When they were that low, her neutraphil count was 130… severely neutrapenic. So, it doesn’t look promising.

She hasn’t been neutrapenic in such a long time. We’re really lucky we’ve had such a good run, really. But, it does mean she can’t go to school or anywhere, really, until her counts go back up. No real contact with anyone unnecessarily. No fruits and vegetables that can’t be peeled. No fresh flowers in the house. There’s more, but I honestly can’t remember… it’s been that long. I’ll have to read my handbook from the hospital to be sure we’re not doing anything stupid.

Anyway, hopefully, the virus will pass without any other infection and her counts will come back up without the chemo to suppress them. But, it would not surprise me if she got a fever and we had to go back. Sigh.

I’ll post again tomorrow when we know for sure. Meanwhile, I’ll leave you with this parting photo of Tanner and Erin Stryker who was Tanner’s Wish Coordinator for our Make a Wish trip to Disney last year. Erin has become a dear friend and she never ceases to amaze me with her dedication to helping others. In addition to volunteering for Make-A-Wish, she also runs marathons for Team in Training, the LLS’ fundraiser. She came to the Light the Night Awards with us last week and the picture is of she and Tanner standing on the famous “circle” at the Grand Ole Opry, where the event was held. Tanner about fainted when we told her Taylor Swift had stood on that circle many times before. “What about Dolly Parton?” she asked, wide-eyed. “Yes, Dolly Parton too.” Priceless.

Love,
Beth

Clinic Day #49

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March 23, 2011

As clinic visits go, today’s was pretty smooth and easy. Tanner’s counts were high – 2,200—but they didn’t change her chemo. She has, we believe, a sinus infection, which could raise her counts as her body tries to fight it. If her counts remain high next month, they will raise her chemo levels above 100%, so hopefully her counts will come back down before then (seems weird to be wishing for low counts, but the name of this game is low, but not too low).

Tanner has been on antibiotics for two weeks now for the sinus infection with little improvement. We could suspect allergies since it is practically snowing Bradford Pear blossoms here, but allergy medication does not help her at all. So, we will continue on the antibiotics and try some prescription nasal spray as well.

After Tanner got her Vincristine (IV chemo), we went down to the food court for lunch. It was nice to not be in a hurry to get back to school (we’re on Spring Break this week). They had medical play today and both she and Jake just love getting a doll or stuffed animal to play doctor with. The doctor play you see at the hospital is definitely not your usual variety. Most kids just take temperatures and listen to hearts. But, “hospital” kids start IV lines and deliver oxygen through masks. Tanner hooked her doll up to an IV pole and carried it around.

We met a family during medical play that had two children both suffering from a bone disease that causes their bones to break very easily and stunts their growth. They were 7 and 8 and neither one any bigger than Jake. The mother said they have broken around 70 bones each and that the daughter is deaf in one ear because the tiny bones in her ear are broken. They come in every three months for a transfusion of medicine that strengthens their bones. I’m listening to this woman tell the story of these kids and realizing that they will never get better. She confirmed that they will always have this problem. I told her that Tanner has leukemia and that sometimes I feel lucky because at least she will (hopefully) get better and not have to endure any more treatment. She laughed and said every time she is in the infusion room she feels lucky because her even though her kids have a bone disease, at least it’s not as life threatening as cancer. We all count our blessings to our own beat, I guess.

It was a tough day for me. Every clinic visit seems to get a little harder lately. I’m tired of worrying and thinking about sick kids – mine and other people’s. This week hasn’t been such a great week for some local CKs.

Savannah, an 11-year-old with soft tissue cancer that I have been following through friends and on CaringBridge, died this week. She had battled this terrible disease for more than 5 years through 3 relapses and had finally run out of treatment options. We had seen Savannah several times in clinic and she stood out to me for her grace and poise. She and Lily were good friends.

We also saw a family in clinic today that we met early on in treatment. Thomas’ brother was an intern at John’s company and we connected with his Mom nearly 2 years ago in recovery while we both waited for our kids to awaken from sedation after lumbar punctures. Thomas has T-cell ALL, a more difficult to treat type of leukemia than B-cell ALL, which is what Tanner has. Thomas’ age, 16, and the fact that he is a boy, increases his risk, but he has done well on treatment. Now, however, he is having some worrisome symptoms that have doctors checking his bone marrow for relapse. I stood in the hall with his Mom and we hugged and cried a little before they headed down for the surgery. I’ve checked his caringbridge three times tonight hoping for good news, but nothing yet.

Another Vandy kid I follow, Cole, is not doing well either. He has the same type of leukemia that Tanner has, but had a central nervous system relapse last year and is undergoing an unbelievable chemo regimen. He has had unexplained high fevers for a week that has stumped everyone thus far.

Several weeks ago, at a Girl of the Year function, I met the Mom of a little girl named Samantha who died last year after a five-month battle with T-cell ALL, including a bone marrow transplant. She was 7 when she died, which is hard for me to hear, and her Mom, even though she was welling up talking about it, quickly assured me that her leukemia was very different than Tanner’s.

On the way home from clinic, we stopped for gas and I went in to buy some candy for the kids. As I was waiting in line to pay, a photo on the newsstand caught my eye. A little girl with a hat and a surgical mask on was surrounded by smiling girls at a party where they had announced her Make-A-Wish trip to Disney. I didn’t recognize this child, but turns out she is also from Franklin and has the same soft tissue cancer that just took Savannah’s life.

It’s just too much sometimes. It feels like cancer is everywhere and that it will never end. Treatment might end for Tanner in August, but the worry won’t go away. We’ll still go to clinic every month on pins and needles hoping that her bloodwork doesn’t show that the beast is back.

I’m tired of worrying. Of wondering if every little thing is actually a big thing. I’m tired of watching kids lose the battle. I’m tired of choking back the terror when I have to admit to myself that two relatively textbook years of chemo treatment can mean nothing in just one little moment.

Cancer, I hate you with a venom I did not think I possessed. Today you are winning the battle with me, but I have no intention of conceding the war.

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 #46

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January 28, 2010

Clinic went pretty well today. She panicked at the LP as usual, but did resign herself to it in the end. She tucked her head under my chin, closed her eyes and said, “Night Night, Mommy” in a tiny little voice. Thank God there’s only one more.

Her counts were ideal at 1180. That means no increases in chemo, thankfully.

She has not felt well this afternoon. Her stomach is really upset. She finally fell asleep at 9 pm with a bucket next to her bed just in case. Still managed to go outside and play with the neighbor kids, though. I wanted to crawl into bed by 2 pm… I don’t understand how she does it.

Speaking of tired… I am.

Goodnight,
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

Clinic Day #43

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November 3, 2010

I don’t know why it surprised me. It shouldn’t have. It’s not like we have not known all along how kind the people at Vandy Children’s are. I think it was just stunning to look at all the kids who were in the hospital today and realize that the comfort and peace of mind of just one of those children was so important to them.

Today, when we went down to the surgery waiting area for Tanner’s LP, both the Childlife Specialist, Sara, and the music therapist, Jenny, came with us. Then they accompanied us to the pre-op room and, finally, to the operating room itself. They played music, dealt a hand of UNO, and generally, were engaging enough to distract Tanner from the impending, dreaded sleepy milk.

It was a vast improvement over the past few times. There were no anti-anxiety drugs, no tricks, no deceit. She did cry and get scared at the very end, but the lead up was so much better. She was just having too much fun to get so worked up.

In the end, I carried her to the operating room and held her while they pushed the sleepy milk into her port. She buried her head in my neck and cried, then finally went to sleep. I laid her down on the gurney and we left to spend another ½ hour in a waiting room we now know like the backs of our hands. It was the best it could be, but let’s face it… it still sucks.

So, four kinds of chemo delivered three different ways… plus steroids… in one day. Anytime I start to feel a little nervous about the radiation next week, I remember all she endures.

Her counts were good… too good at 2,600, so they upped her chemo again. I suspect she will feel pretty bad tomorrow, but you would have never known it this afternoon. She danced and sang and she and Jake put on a superhero show for Aunt Beth. And, unbelievably, had trouble going to sleep tonight because of the “nap” she had at the hospital.

Heard about yet another little girl from Franklin diagnosed with leukemia this week. Please pray for her family as they struggle to comprehend the incomprehensible and for this little girl that the chemo begins to heal her quickly and her body responds as the doctors hope it will.

Love,
Beth