Category Archives: prayer requests

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 #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

Big Black Dog

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January 17, 2011

Meet Daisy Mae Page
Age: 10 months
Breed: Big Black Dog
Temperament: All sweetness and kisses

We met her at Petco in Bellevue. She was one of the many dogs rescued by Proverbs 12:10. Daisy Mae (formerly Thelma) has been coming there every Saturday since she was a pup. I can’t imagine why. She loves everyone and gets along with everything. But, lucky for us she was still there last Saturday so we could spot her, fall in love and bring her home. Technically, we are “fostering to adopt.” We have until next Saturday to decide whether we are keeping her for good. But, I think it is safe to say the Pages are smitten and hopelessly committed, barring some kind of unforeseen Cujo moment, of course.

The interesting thing is that she has never been an inside dog. She has lived her whole life outside. But, she has been a perfect lady inside and is quickly figuring out what she’s been missing. Now, if she could just figure out what stairs are and how to navigate them!

Tanner has been doing well. She has struggled with some minor health issues like a urinary tract infection, a still unexplained rash on her arm and a persistent cough. But, it hasn’t stopped her from rehearsing for her Alice in Wonderland shows next week and loving it. She is the cutest rose! I can’t wait to see the show.

On a sober note, please pray for the little two-year-old girl, Alli, who I have mentioned in previous posts. She has pre-b ALL, just like Tanner, but is high risk. Their road has been unbelievably difficult and Alli has been on a ventilator since last week, fighting fungal pneumonia. Fungal pneumonia is very serious; so serious that all kids with ALL take daily antibiotics to prevent it. She had to be moved up to an oscillator today, which is apparently a step up from a ventilator, because she is having so much trouble breathing. I can’t imagine the pain of watching your child slowly get worse, instead of better. After all we have been through with Tanner, I don’t think we’ve ever had a situation that didn’t improve steadily. It must be absolute hell. This sweet little girl and her family need prayers.

Love,
Beth

Spent the Day at the Hospital

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January 5, 2011

As we suspected, we did end up at the hospital today. We made it through the night with no fever, but Tanner woke up with no improvement in the neck pain, coughing and feeling bad. While we were waiting to be seen, I noticed she had developed a lacy rash on her arms and neck. I actually felt relieved about that because it meant that she probably had a virus as opposed to swollen lymph nodes because of reasons I can’t even bring myself to write.

The doctor agreed that she probably has some kind of virus and has tested her for all viruses, but specifically for Epstein Barr and Parvo Virus. Epstein Barr is the virus that leads to monolucleiosis for some people, but not all. Parvo is commonly called Fifth’s Disease or Slapped Cheeks because it can cause red cheeks and is accompanied by a lacy rash. Neither will be a great situation as both viruses are known to compromise bone marrow and can cause anemia. In the normal person, their bone marrow can compensate and regenerate quickly. Tanner’s will not. If she has either of these viruses, her counts will likely drop across the board and necessitate blood and platelet transfusions and bottom out her neutraphils. It would take a while for her body to recover. The results of the virus panels will not come back for a few days.

Waiting for an antibody transfusion

Dr. Mixan decided to give her an IVIG transfusion. This is an antibody transfusion that might help her recover from this virus. The effect of an IVIG transfusion is not proven on ALL patients, but anecdotally, it has helped Tanner in the past. She is almost always low on the IgG antibody, but we usually don’t transfuse until she’s below 400 (600 is the low side of normal for a kid her age). She was at 481 today, but we thought it might help. Unfortunately, it has a common side effect of nasty headaches for a few days. Tanner had one last time (this is her third IVIG transfusion) so I’m waiting for that shoe to drop.

Tanner cried today thinking she might not get to go to Alice in Wonderland rehearsal on Friday night or her first Annie rehearsal Saturday. I’m hoping she’ll get to be in the plays at all.

She cried a lot today. About going to the hospital this morning, about being “sick,” about possibly missing things. She is just so sick of all of this. I want to hug her and comfort her and tell her I understand, but unfortunately, I think it doesn’t help her be strong… and she needs to be strong. We reminded her today that everyone gets sick, not just people with leukemia, and that this isn’t that big of a deal. But, I think she is smart enough to know that when “normal” kids get sick, they don’t have to go to the hospital and have blood drawn and get transfusions. As always, though, she bucked up and is holding it together, at least for now.

Please, please send good thoughts or pray or whatever you do that this is just a bump in the road and not a break down that will cause her to miss lots of school and these plays she so desperately wants to do.

Love,
Beth

Clinic Day #45

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January 4, 2011

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

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

Here are the highlights:

A White Christmas in Tennessee

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

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

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

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

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

Love,
Beth

A Plea

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December 14, 2010

I’m writing this with my laptop propped on Domino’s back since he is nestled half on my lap and half on the bed. With great sadness, we have realized we cannot keep Domino. He has nipped Tanner twice in the past month and has begun chasing neighborhood kids when they run into the yard. We had a trainer coming next week to work with him, but just decided that he would be much better off with a family without children. So, he will be going back to the rescue organization that had him before he went to the prison on Saturday, UNLESS someone out there is looking for a beautiful and loving Dalmatian/pointer mix who would make a great pet for a family without kids.

Here are his particulars: He is three years old, neutered, micro-chipped, up to date on shots, heart-worm and flea control. He has passed his AKC Canine Good Citizenship test and knows sit, down, stay, come, give a paw, rollover and Bang! He is completely and very reliably house-trained and crate trained. He never chews anything up unless it is food or smells like food (he is quite a chow hound and has a great nose, so you have to be careful leaving food out). He is smart and silly and loves to be near his people. He has never shown any aggression towards John or I and does not challenge our authority. He would probably do best as the only dog and does not like cats. He is initially growly and seems aggressive when meeting a dog, but mellows out if the other dog does not want to fight. He needs regular exercise, but is definitely not as energetic as a pure Dalmatian and is very calm and docile in the house. He needs to be an inside dog with outside privileges.

So, if you or anyone you know are interested, please respond to the post ASAP. You wouldn’t be sorry. We are heartbroken to have to let him go.

Love,
Beth

Lighting the Night with Joy

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October 8, 2010

Light the NIght 2009

Last year, at the Light the Night Walk, we pulled Tanner in a wagon, propped up on a pillow, and covered with a blanket. She was pale and weak and tired, but determined.

LIght the Night 2010Last night, as we crossed the parking lot at LP Field, John and I exchanged a meaningful glance as he took a video of our daughter, pulling that same wagon, loaded with chairs and posters, all the way to the tent. She was bright-eyed, pink cheeked and, as always, determined.

It was a beautiful night and our tent was overflowing with the love and support of the friends and family that came there to lift up our family. Jake came this year, which made the night complete. After all, the four of us all have cancer in one way or another.

We had the best time. Tanner had three good girlfriends there and they sang, danced and skipped their way through 1.75 miles of sparkling downtown Nashville. The kids had their faces painted by Titans cheerleaders, jumped in the inflatables and ooohed and ahhed at the fireworks that started right as we crossed the Shelby Street Bridge. Jake was fascinated with the lighted balloons and collected them from walkers as we went along.

How many squealing 7-year old girls can fit in a wagon?

It was the perfect ending to a perfect day. After I dropped the kids off at school that morning, I met my friend, Margaret, who had come all the way from New Jersey with her husband, Larry, to walk with us. We had coffee and shared stories, then I picked up both kids early from school and got them home and down for naps.

Then, I checked Team Tanner’s site.

I couldn’t breathe for a moment.

There had to be some mistake.

Just five hours earlier, when I had last checked the site, we had a little more than $15,000. More than I had ever dreamed and I was so grateful. At 2 pm we had $19,000… really.

I searched through the individual fund-raising pages to figure out where this much money had come from in such a short period of time. I began finding large donations from John’s coworkers at Franklin American Mortgage Company. As tears rolled down my cheeks, I called John to tell him to personally kiss all of them for me.

I checked the site again about 2 hours later… $21,000. More tears. Another call to John.

One final check before we got in the car to head to the walk… $24,132. My hands were shaking as I yelled out to John to look at the computer screen. Unbelievable. Nearly $10,000 in one day… we could probably fund a study just from the money raised by Team Tanner this year.

It is a dream of ours that no family ever have to go through this again. That no child ever have to sacrifice so much of their precious childhood to a disease so insidious that it would kill in a matter of weeks if left unchecked. A disease that hides in their little bodies for years, waiting for a weak moment so it can make it’s way back into their bloodstream. Last night went a long way towards realizing that dream. You all have helped us feel victorious when it is so easy to feel beaten down.

We are so grateful that there really are no words.

Love,
Beth, John, Tanner and Jake

P.S. The walk was such a beautiful celebration of the spirit with which children and adults fight for the right to keep living, to keep finding more and more joyous days.
But, I was reminded in one swift moment, how quickly cancer can end a celebration. I saw a friend whose son is 20 months out of treatment. She said they had been to clinic that day for his every 3-month blood check and his counts were still very low; they have never recovered from treatment. He is having a bone marrow biopsy today to determine whether the leukemia is back. Sobering and terrifying and I can’t stop thinking about them. Please pray that the leukemia leaves this little boy and his family alone so they can keep enjoying their lives.

One Down, One to Go

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August 9, 2010

A little IV pole never stopped anyone from playing legos

All finished with the IVig transfusion. It didn’t take as long as we expected. Apparently, the first time they give the infusion, they have to do it slowly in case the child has a reaction. But, the next time, they can infuse faster since they know she didn’t have a reaction last time. So, it was a shorter visit than we expected, which was a great surprise.

Still, we were there for about three hours, but actually had a pretty good time. The kids were so into playing legos that they didn’t want to leave. They also had a good time with Guy Gilchrist, the man who draws the Nancy cartoon from the newspaper. He was at clinic teaching kids to draw. He also drew the Muppets cartoon for years and taught Tanner to draw Kermit. He was funny and entertaining and helped pass the time.

Tomorrow is Tanner’s last day of summer vacation. Wednesday, she goes to clinic and Thursday is the first day of school. We’re going to see a movie in the morning, registering for school in the afternoon and then, hopefully, swimming with friends.

Wednesday morning is the dreaded lumbar puncture. Tanner is very worried about it. We’re going to give her ativan in the morning, an anti-anxiety medication, and hope that helps her get through it with the minimum amount of trauma. Please pray for her. It’s wrong for a child to have to worry so much about something.

Love,
Beth

A Quick Update

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July 27, 2010

Jake hid in the garage during the shaving cream fight

Sorry it’s been a while since I last posted. A few of you… ahem… (you know who you are) have gently reminded me I have been slacking a little. As my friend Ashley said, though, when I don’t post for a while, it usually means everything is great.

It is. Great, I mean. We’ve been busy enjoying the end of summer before school starts in a few weeks. I’m having that thyroid surgery tomorrow, so summer is pretty much over for me and I’ve been trying to squeeze in the last little bit of time with the kids before I’m out of commission for a little while.

So, here’s the short story about the last week or so: We had water day in the cul-de-sac… slip n’ slide, water balloons, shaving cream fights, etc. We’ve checked a few items off our family summer fun wish list like making homemade ice cream and swimming at night with the lights on in the pool. Tanner’s in dance camp this week which will culminate in a show that neither John nor I will be able to see, but Aunt Beth and E. and Jake will attend. And, other fun summer stuff like bike riding, swimming and throwing rocks in the creek.

So, surgery for me in the early a.m. and I probably won’t post for a few days until I can be sure that my posts will be coherent (pain meds and public forums do not mix). We are, as always, well taken care of by our family and friends. Our support network is nothing, if not efficient, by now.

Wish me luck.

Love,
Beth

Clinic Day #36 — Ever So Slowly

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July 1, 2010

We went into clinic this morning for counts. I was expecting, after three weeks of being on 50% oral chemo dosage, for her counts to be well up above 1,000… but… no. 900. 900? That’s it? That’s only gaining 100 neutraphils per week… pretty slow, but I guess at least it’s in the right direction.

There is a theory that after a long time on chemo, the body develops bone marrow fatigue. As if to say, “Why should I bother to make any new cells, you’re just going to kill them?” Seems realistic to me.

So, we’re not quite ready to dine out in a restaurant again, but we’re not hibernating either. We’ll take it.

Been busy swimming a lot, playing with Domino and having playdates. Tanner’s friend, Meredith, came over yesterday for a “slumbover”… that’s when you have a friend over in the afternoon and they stay for dinner, you put on your pajamas and watch movies and they go home at bedtime. They had a super time.

Tanner got her birthday present a little early today (her birthday is July 8th). She wanted a new bike and we gave it to her today so she could ride it in the 4th of July parade in Franklin on Sunday. She opened up the garage door to go out and ride her scooter and just screamed in delight when she saw it… I love that.

Please pray for our little friend, Madelynn and her family. Madelynn is four and lives in our neighborhood and has ALL. She has just started maintenance and is experiencing the roller coaster that is the first months of this stage as they try to find the right dosage to keep her counts stable. Maintenance is such a dance; we’re still doing it. But, those first few months are very unstable. We were actually supposed to have a cookout with Madelynn’s family and Lily’s family last weekend and, ironically, had to cancel because Madelynn was in the hospital with low counts and a fever. Thankfully, it turned out to be a pretty benign virus and she got to come home pretty quickly. But, her counts continue to stay very low. I ran into her Mom, Amy, walking in the neighborhood early the other morning. We talked briefly about how disappointing it is to start maintenance… it seems like it should be so great, but it’s actually pretty rocky. It’s just a tough pill to swallow when you’ve waited for those first awful six months to be over.

Love,
Beth