Category Archives: emotions

The Magic of Being Special

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May 13, 2010

John suggested two titles for my post today:

1) Is there anything a Superhero cannot fix?
2) Have you ever been put to bed by a six-foot rabbit?

It’s a good day when you can come up with two humdingers like that!

We started out this morning tired… very tired. Jake was coughing… a lot. And, Tanner was definitely not her peppy self. We decided we would just go to Universal, stay for a couple of hours and come home. When we got there, we discovered that Universal is no Disney World. You walk a long way to get into the park and the workers didn’t seem nearly as kind or customer service oriented. The kids were comatose, just going through the motions.

Then, as we were walking through Super Hero Island, some loud music came blaring out of the speakers and Superheros came riding down the street on three-wheelers. Jake and Tanner were mesmerized and we got in line, immediately, to get autographs and pictures. No heading to the front of the line here, we just waited with everyone else, hot and tired… bummer.

Then, Captain America noticed Tanner’s button and asked her a few questions and pointed her in the direction of… Andy… the true Superhero of the day. Andy pulled us aside and escorted us to a quiet, shaded spot where after about five minutes, we were treated to our own private superhero meet and greet!!!! Hurray! We were special again and the kids were enthralled. The Superheros were so kind to the kids and spent so much time with them. We will be forever grateful.

That moment turned the day around. Everyone perked up, we spent some quality time with the Dr. Suess characters as well, rode some rides, saw a Sinbad show, ate a little lunch and headed home in time for naps.

After dinner, the Village turned into Winter Wonderland! There were Christmas decorations everywhere, horse and carriage rides, Santa Claus, a Christmas parade and even snow from a snow machine. Unbelievable! Tanner and her new friend Maddy, raced around dancing with the parade characters and decorated some Christmas cookies while Jake and I chased a reindeer around and played in the fake snow.

We hustled the kids home for bed, who were indignant that we cut the party a little short for them. But, we had a special surprise… Ms. Merry, the wife of the Mayor Clayton of Give Kids the World Village (and a six-foot rabbit) came to tuck the kids in and put them to bed. They were enchanted. She led them to bed, pulled up the covers, checked under the bed for monsters and turned out the lights. Of course, after she left, John and I spent a good half-hour trying to get them calm enough to go to sleep!

Here’s the thing about being here. It’s not just the amusement parks or this amazingly fun village or anything else that there is to do here. It’s how special the kids feel. How after so many months of sacrifice, disappointment and pain, they feel magically, wonderfully special. That is the magic of this trip and we will be forever grateful to all the volunteers and employees of Make-A-Wish, Give Kids the World Village and the theme parks for making our kids have one shining, magical week in the midst of this hardship.

Love,
Beth

We Made It!!!!

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May 10, 2010

Our drive went well and we arrived yesterday at 6pm in Give Kids the World Village, the resort just for Wish kids. It is truly a magic place. There are probably 50-75 wish kids here with their families and 8,000 volunteers work together with a small staff to make every moment special for these kids who have been through so much.

Just a few highlights:

• The present fairy comes every day and leaves gifts for the kids. Today we got a special Give Kids the World Village Candyland game.

• The characters from three theme parks come here so the kids get more undivided attention. This morning – Goofy, Pluto, Mary Poppins, and Mickey and Minnie.

• The Mayor of Give Kids the World Village is a large rabbit and he and his wife, Ms. Merry are here every night. Tanner rode the carousel with Ms. Merry two times tonight and is so smitten with her. We will call tomorrow to arrange for Ms. Merry to tuck Tanner and Jake into bed one night this week.

Tanner and her new friend, Ms. Merry

• There is a putt-putt golf course, splash park, train, playground, magic castle, theatre, etc., etc., etc. All right here at our beck and call.

• There is an activity every night. Last night, there was a Candyland party on the playground with a DJ and Tanner danced the night away while Jake played on the playground. We even played a giant game of Candyland. Tonight, there were therapy dogs to pet, a Kinkachu and an armadillo to see, a man with a telescope showing you the sun and a party that we didn’t attend because everyone was tired.

• All of our meals are free here and there is ice cream all day long. We had ice cream right after breakfast this morning!

• Tanner had her nails and makeup done at La Ti Da spa and she and Jake both got airbrush tattoos. Again, all done by volunteers.

• The list goes on an on, I can’t say enough about these amazing people and how fun it is here in the Village before we even get to a theme park.

We went to Sea World today and saw the Shamu show and rode some rides. Everyone had a great time. Tomorrow, we’re heading to Magic Kingdom tomorrow to see the Princesses, Lightening McQueen and Mickey Mouse.

So, here’s the only downer… Tanner is still coughing… and coughing… and coughing. It definitely seems worse and it took her a very long time last night and tonight to get to sleep because of the coughing. But still, no fever, which is what they told us to look for. So, we don’t know anything else to do but keep going… carefully. We are trying not to wear her out and forcing her to take naps to try to avoid worsening her immune system with fatigue. She has had a coughing virus before that she got over without incident, so we’re hoping that’s what it is. We’re going to Magic Kingdom tomorrow because we’re terrified we’re going to end up in the hospital and that’s the theme park we would most want to go to if tomorrow is our last day. So, pray for healing for her.

That’s about it. Good night!

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

Meet Domino

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April 26, 2010

Today, we ordered a dog. He’ll be ready for delivery in June.

This dog actually poses when you point a camera at him

John, the kids and I loaded into the car today for a two hour drive to Kentucky to meet Domino. We got through the security gate and parked in the lot they directed us to. Through the chain link fence, we could see inmates walking and exercising in the prison yard. Occasionally, you would see an inmate walking a dog. Then, we spotted a woman walking a very prancy Dalmatian toward the lobby. When we went inside, we found a very sweet, very gentle, very spotty dog that we all loved. We spent about 20 minutes with the kids walking him around the room and petting him. He was very well-behaved and very calm around the kids. By the end of our visit, he was leaning against John with his eyes half-closed while John petted him. What a great dog! Can’t wait until June. John and I will go back, without the kids, for a graduation ceremony and meet the inmates who trained him. They’ll get the chance to tell us everything they know about Domino and we’ll get to chance to tell them what this dog will mean to our family.

Take that cancer.

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

What is normal, anyway?

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April 14, 2010

This may have been the longest I’ve gone without posting since Tanner has been diagnosed… 6 days. It’s weird, but things are so normal I feel like don’t really have much to say. Tanner feels really good and looks really good and, mostly, seems like every other kid.

Then, there are moments when I see our life from an objective viewpoint and it hits me that none of this is really normal… it’s just what we’re used to.

For example, last Thursday night, John was preparing Tanner’s nighttime meds and said, “Good grief, am I right with all this she is taking?” He was staring at our medication spreadsheet, taped to the inside of entire double-wide kitchen cabinet dedicated to medicine, mostly Tanner’s. I usually update the spreadsheet about every 2 weeks, after clinic, to be sure we’re current on everything she takes (really, it’s that confusing), but I’ve been kind of slacking lately with the move and all, and he wasn’t sure what he was seeing was correct. I assured him it was. Thursday night sucks. She takes ½ 6MP pill (daily oral chemo), 5 methotrexate pills (weekly oral chemo), 2 neurontin capsules (for neurapathy due to the Vincristine), mepron (a daily antibiotic that prevents a dangerous type of pneumonia), omnicef (antibiotic for the urinary tract infection), claritin (for allergies), pepsid (for the stomach problems that all these meds cause), and zofran (anti-nausea med to prevent the nausea that the methotrexate usually causes overnight). As you can see, nothing normal about a 6-year-old taking all this, and that’s just her nighttime meds.

Today, I spent hours on the unfortunate task of trying to untangle the last month’s medical bills. All of our deductibles have rolled over, so I’m forced to pay close attention to the bills again to be sure we are paying the correct amount. It’s a nightmare matching up the EOB’s from the insurance company and the bills from doctors and the hospital. In the stack, I came across an old bill that had not yet been filed. It was from one clinic day back in the early November – the dreaded first day of the second half of delayed intensification. We stayed at the hospital from 8 am to 6 pm that day, getting every kind of chemo but the kitchen sink. The bill was a testament to the fortitude of my child, to her desire to thrive and survive. Three pages of chemo, listed on line after line. It reminded me how much Tanner’s body has already endured and worried me about how it will effect her long-term.

Tanner came home yesterday SO excited about a birthday party invitation from a little girl in her class. It is at Jump Zone; and we have not allowed Tanner to go there since diagnosis. She was so hopeful, but also was aware that she might not be able to go. I could see on her face how important it was to her… how desperately she wanted, needed to feel normal… to just go to a birthday party like the other kids. I told her I would have to talk to John that night, as he is out of town. That night, we decided that she could go as long as I stayed and applied some hand sanitizer every once in a while. Tanner was thrilled and accepted our stipulation. She was so funny, though. She said, “Dad’s not coming though, right? Just you? Cause Dad will be so crazy with the hand sanitizer.” I laughed and laughed. She’s exactly right. It will be much less embarrassing if germ-a-phobe Dad stays home (love you honey!). So, we’re so happy she’ll be able to go, but there’s nothing totally normal about your Mom lurking in the shadows with hand sanitizer.

So, it’s not really normal, but it’s cancer normal. And, for cancer world, she’s probably about as normal as possible right now. We’re planning for summer camps and our trip to Disney and the Spring Fling at school. We’re grateful and it’s a relief to not feel like we’re in crisis mode, even if it always seems one fever away. I see things ahead that don’t involve hospitals and isolation, but are just normal things that kids and families do. It’s not normal by most people’s standards, but we’ll take it.

We received some awesome news this week… we can get another dog!!! Yay!!! I don’t know who is more excited, me or the kids. We’ve picked out a dalmatian mix from McMuttigan’s rescue in Kentucky. The trainers are child-testing the dog this week and will let us know if they believe he will be a good candidate for us. He is in a three-month training program in a Kentucky prison and will be trained especially for us, by prisoners, by the time we get him in June. We will also know he has been thoroughly vetted over the past three months, so he should be safe for Tanner. So, cross your fingers that he is bomb-proof; we already feel attached to him. If you’re in the market for a dog, consider this program… it’s such a win-win for everyone. The last time we almost got a dog from this program, the prisoners were pouring extra love into the dog we had picked out so their “little angel” would get the best dog possible. Blessings come from the most unusual sources sometimes.

Sorry for the long post… guess I had something to say after all!

Good night,
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

Stumbling Blocks

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March 23, 2010

Tanner woke up on Sunday morning with a cold or allergies, hard to tell which. She sneezed all day and was stuffy. Monday morning she seemed no better so we kept her home from school and gave Claritin a try. She didn’t sneeze as much and, aside from a little tired patch in the afternoon, seemed fine. This morning, still stuffy and we sent her to school. They called me by noon to pick her up. Her teacher said she didn’t have her normal energy level and that she asked to go home during recess.

She actually didn’t seem that wiped out this afternoon. She was actually really frustrated that I wouldn’t let her have a playdate. I kind of think she may have allergies, but who’s to know and wouldn’t it be a stupid mistake to send her into the germ fest that school is when her immune system in compromised. Truth is, we don’t know what her counts are. They increased her chemo two weeks ago and that alone could be affecting her counts. Also, you never know what a cold could do to her. We’ve seen infections and viruses make her counts go sky high and we’ve seen them wipe them out. So, difficult to make any kind of educated guess about the right thing to do without a true counts check.

We go in for our monthly clinic visit on Thursday so we’ll keep her out of school until then to be safe. If her counts are good, she can go to school Friday, but she’ll start steroids Thursday morning, so who knows whether she’ll feel like going.

It’s so hard to make a good call in this situation. Inevitably, you go with the choice that keeps her from ending up dying from some cold gone bad, even if it means you feel like you’re slaying her psyche in the process. Seriously, this is the way we think. She senses my lack of conviction in the decision to keep her at home and begs and wheedles for playdates, school or anything that gets her around kids. I don’t understand it, so I don’t know how she’s supposed to.

I feel like this is a blow I had prepared myself for and I don’t feel too surprised by it. Discouraged maybe, but not surprised. I hate that she’s having to stay home most of the week after such a small taste of freedom, but I’m also thankful she got to have last week at all. I’m more discouraged that, after the IgG transfusion, she still seems to have caught a respiratory virus. Hopefully, that’s not the case and it’s just some spring allergies.

Tanner’s handling the disappointment okay on the surface, but is still having some behavior issues which indicate all is not as well as she claims it to be. We have an appointment with the play therapist who, mercifully, came back from vacation. Hopefully, that will help.

On the agenda tomorrow… maybe a field trip to Aunt Beth’s.

Arggghhhhhh.

Love,
Beth

A Whole Week

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March 19, 2010

Tanner made it. A full week of school. It seems so surreal, but at the same time, so normal. Normal, normal, normal, normal… I love the sound of that word. I’ve kind of forgotten how to do normal. I had the opportunity to do cool things with Jake this week and couldn’t remember what to do. We did go to playgroup today for the first time in more than nine months. He got to play with a whole group of kids his own age… priceless.

Tanner’s teacher said she did great this week. She isn’t behind at all academically and she said she was astounded by Tanner’s stamina. When she gets tired, she lies down in a beanbag chair in the classroom for a rest, but has mostly seemed like any other energetic first grader. Many thanks to Mrs. Franklin for taking such good care of her this week and to Mrs. O’Hara for preparing her so well for returning to school. Because of her expert tutoring, Tanner has been able to keep up with her peers.

I’m so scared to really enjoy the moment, though. So afraid it won’t be long before she is disappointed again. Scared that the recent increase in chemo to 75% dosage might have tanked her counts and we’re sending her to school with no immune system. Scared Tanner is pushing herself too hard and will get fatigued and get sick. Scared, scared, scared. I hate living like that. It’s one of the not-so-great side effects of this journey.

Beth and I sat out on the deck today and ate lunch while watching the birds and the squirrels playing around the creek. So much nicer than looking at a fence. It’s peaceful here and that’s something I’m trying to remember to take time to enjoy.

Played in our old neighborhood today. Jake and I parked there and walked over to the school to pick Tanner up. We brought scooters and just stayed to play with our friends. It was good medicine for Tanner to see how easy it was to still play with Corinne. She has been so anxious about that.

More unpacking and curtain hanging on tap for the weekend. And rest for Tanner. Recover from this week and gear up for the next. I’m not so naïve as to think there won’t be bumps in the road, but I’m really hoping for a smooth ride for a little while. Tanner needs it.

Love,
Beth

School Days

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March 16, 2010

Tanner will go to her fourth day of school tomorrow. It really, really seems too good to be true. She is so, so happy to be going and has adapted beautifully. Her teacher told me that on Friday, her first day, whenever she would look out at the class, there would be one child just beaming every time… guess who? We are so grateful to the kids and staff at Moore Elementary for making Tanner’s homecoming so special and for nurturing her with such love and compassion.

Friday and Monday she stayed at school until 1 pm. Friday she begged to stay. Monday she had the teacher call me to come get her… she was too tired to stay. But, today, I thought I would let her try to stay until 2 pm. I went to get her at 2 on my way to pick up Jake at preschool and she was in the gym skipping with one of those things that straps around your ankle and you jump over the rope with the ball at the end. She begged to stay and said, “See, I have aaallllll my energy!” And she did. So, I left her and came back for her at the end of the day expecting her to be exhausted but she wasn’t. After playing some wii with Jake, we went outside for some scooter and bike riding with the neighbors. Crazy.

So, I had my first real day off from Momming in nine months today. It felt great. John gives me lots of time on the weekends to recharge away from the kids, and my friend Beth is awesome about staying with them, too. But I always feel a little beholden. Not so when I drop the kids off at school. Everyone’s happy and I’m paying for them to be there so, no guilt… bliss.

I would love to say I did something decadent like had a massage or something, but I went to Big Lots for some organizing supplies and then unpacked and organized our bathroom stuff. So glamorous. But, you know what? I was uninterrupted and watched HGTV the whole time and ate my lunch by myself, so it was fabulous.

Did I mention we moved this weekend? We did. It went pretty well, although Tanner did not handle it very well. I think kids in her situation carry such a high level of anxiety to begin with that any little thing can put them right over the edge. She had very mixed feelings about moving. She is really sad not to be across the street from Corinne and worried that they won’t be friends anymore. But, despite what she says, I think she loves the new house. Bottom line, though, moving can unsettle any kid, much less one who has a lot of reasons to be afraid of what’s around the corner.

Tanner being anxious about something translates into some pretty supernanny-worthy behavior. I was in total agony when I called the play therapist to schedule an intervention and found she was out of town for the week. I am sure she heard the desperation in my voice when I left her a message.

Many thanks to my parents for helping out so much this weekend. My Dad hung and fixed many, many things while my Mom was her usual whirling dervish and ran circles around me packing and unpacking. They stuck it out even though Tanner was a nightmare and I appreciate it more than they will ever know.

Even Jake was a little whiny and ornery although mostly he just likes to tell everyone how much he loves his racecar room. He “wuvs” the new house and calls it our “new home.” God knew what he was doing when he gave me this child. He is like a balm for what ails me. Even though he is only three, he plays a huge role in helping me get through this experience. He recharges me daily with his sweetness and light.

This new house is such a blessing for us. It feels like a shoe that fits just right. I love everything about it (with the exception of my laundry room, which is really a laundry closet) starting with the cul-de-sac that we live on, which is the perfect place to ride a bike, the neighbors who have been so kind, and the view of the creek and trees out the wall of windows in our living room.

I’m off to bed in Tanner’s room. Leukemia has turned her into a chronic sleep walker and we are terrified she’ll make a wrong turn in this new environment and fall down the stairs. Until I feel comfortable that she has the lay of the land embedded into her subconscious, I’m bunking it in the twin beds.

Before I sleep I’ll be saying prayers for some kids that need them. Madelynn, our little 3-year-old friend and neighbor who has ALL is going through Delayed Intensification and is having a very hard time with nausea and stomach pain. She is three and can’t articulate her pain to her parents. Please pray the pain subsides and that her parents, Amy and Alex have the strength it takes to watch your child suffer so cruelly.

Also, a little boy named Cole has the same type of leukemia and treatment plan as Tanner, Lily and Madelynn and recently had a CNS relapse. He has caught a cold that turned into fungal pneumonia and is not responding well to treatment. Please pray that the doctors find the right medication to help him make it through this. So terrifying… this child was in maintenance and doing well. Just reminds me how fragile Tanner is even when she looks and feels great.

One more… Samantha who just had a bone marrow transplant and is in the midst of the worst of the side effects.

Too many kids suffering…

Love,
Beth