Wednesday, June 30, 2010

Weekly stats

Tali's trip to the hospital for her weekly exam was short and sweet.

Some of the blood counts are on the rise while others have dropped a bit. (Fortunately, no infusions were necessary today.)

  • Platelets climbed from 78 to 119 (still considered low until they climb to over 150)
  • White blood cells increased from 1.7 to 2.4 (still considered low until they climb to over 6.0)
  • ANC improved from .60 to .90 (still considered low until they climb to over 1.5)
  • Red blood cells dropped from 3.17 to 2.97 (these need to get above 3.70)
  • Hematocrit dropped from 27.6 to 26.1 (this needs to get up above 33.0)
The feedback from the doctors is that Talitha is still improving but the counts are coming back slower than they'd prefer.

They want her to come every other week now instead of weekly so I'm taking that as a positive sign.

We'll just continue to do our best to keep watching, praying, and staying positive.

Tuesday, June 29, 2010

Baby steps

I had a delightful phone call with my mother this evening. It's her diamond birthday (75th) and I so enjoyed reminiscing with her and learning from her as she shared some very inspirational insights.

At one point in the conversation, we acknowledged that even with the experiences we've had so far in life, we've barely scratched the surface of what there is to learn and understand. That's both an exciting and a daunting thought.

I think of the times I took classes in high school or college and hoped that I would already have a good enough understanding of the subject to not have to sweat getting a good grade. Unfortunately, my understanding at the time was that school was really just something to hurry through and pass with good grades so I could get on with life.

Now my understanding is changing. Classes are to learn from, not to expect to come in and know it all already. The same goes for classes we take in Earth life--sometimes referred to as the School of Hard Knocks. (Some days it feels I'm taking graduate level courses from this highly respected institution.)

The point is--weird as it may sound to those of you who don't suffer my same ailment--we don't already know it all. We'd probably consume a lot less blood pressure medicine if we'd just remember that simple fact and give ourselves the space to learn, grow, and develop (especially as adults).

Recently, I finally came to acknowledge that to become aware of a sin, imperfection, or challenge is not the same as to know how to repent, improve, or change it. In other words, mere recognition of a problem does not mean we're immediately equipped to change it or to do better.

What I'm learning is that the atonement of Jesus Christ makes it possible to have patience with ourselves in the school of life without fear of being overrun or ruined. This life is the time to learn and prepare and improve.

"And the days of the children of men were prolonged, according to the will of God, that they might repent while in the flesh; wherefore, their state became a state of probation, and their time was lengthened, according to the commandments which the Lord God gave unto the children of men." 2 Nephi 2:21

What if we really gave ourselves the space to become aware, learn, practice, and try, try again.

I've often remarked that parents have such patience with their little children learning to walk. We don't put down their efforts no matter how long it takes. We just keep encouraging and celebrating every little step.

But sometime between the learning-to-walk and becoming adults, we lose patience with the baby-steps of life. For some reason we stop celebrating and encouraging and instead become self-appointed critics and judges. (And we tend to be harshest on ourselves.)

I watched with some wonderment as Talitha courageously grabbed her mother's hands tonight and walked with everything she had. We are all just as excited and cheer just as loud for every ounce of progress this time as we did the first time she learned to walk.

We understand and appreciate that she's doing the best she can and that's worthy of celebration.

I think it's time to acknowledge that the ENTIRETY of life is just a series of baby-step lessons where we can enthusiastically show up, do our best and even be our own cheerleaders.

And even if--especially if--we must learn the same baby-steps twice, SO WHAT! Who but God knows the trials we each individually face and the depth of our desires to just be loved and cherished for who we really are and according to our own unique gifts and capabilities.

No one cares more about us than God. He has an infinite patience for our baby-step progress and encourages us every step of the way. In fact, He died for us to overcome death and hell so that we could have a fullness of peace, happiness, and joy. In His own words:

"...this is my work and my glory—to bring to pass the immortality and eternal life of man." (Moses 1:39)

So, I'm a big fan of baby steps now.

And I'm going to give myself permission to take some.

Monday, June 28, 2010

...and then some!

Some years ago I was in charge of a summer youth activity by a lake up in the High Uintas.

The theme for that youth outing: "...and then some!"

The t-shirts we made with the theme printed on the back are long gone and I don't remember all the clever ways we tied that theme into the three day trip but I do remember talking about God's love for His children.

We would say things like:

God loves us...and then some!
God cares about each one of us...and then some!
God wants us to succeed...and then some!

I'll never forget that trip and the feelings and inspiration I felt.

After dinner tonight, I saw Talitha leaning up against the couch looking about as cheery as ever with a necklace hanging past her waist. With a bit more confidence, she could have pushed off and walked a few steps I'm sure.

On nights like this when my heart is past full it’s like that theme from all those years ago: I love my little girl...

...and then some!

Sunday, June 27, 2010


Audrey and I took Talitha on a long stroller ride this evening.

Perfect weather.

We passed neighbors and friends; others were also taking advantage of the opportunity to walk and talk and enjoy this beautiful world God made.

I'm hoping that these moments are the gentle transitions toward the day that Talitha will be able to be with us at church and other public places with lots of people around again.

Tali loves people. She loves to wave and say "hi" from a distance. Then if someone she's not too familiar with gets close enough to say hello or ask her questions, she'll get shy and pretend to forget how to talk.

But make no mistake about it: she loves the human interaction.

We don't know how long this time of "transition" will be.

So, thank you for the untiring encouragement and support. I promise it means more to us than you realize.

Saturday, June 26, 2010


I'm grateful for the scriptures. They've been a life line to me so many times throughout my life.

When I come across scriptures that talk about healing, that grabs my attention.

Today was one of those days as I was reading Christ's words of invitation after His resurrection and came accross the word "heal":

"Will ye not now return unto me, and repent of your sins, and be converted, that I may heal you? Yea, verily I say unto you, if ye will come unto me ye shall have eternal life. Behold, mine arm of mercy is extended towards you, and whosoever will come, him will I receive; and blessed are those who come unto me."  3 Nephi 9:13-14

Of all the wonderful names and ways to refer to Christ, the one I'm especially grateful for tonight is "Healer". Christ has the power to heal us temporally and spiritually. This is beautifully portrayed in Mark 2:5-12:
"When Jesus saw their faith, he said unto the sick of the palsy, Son, thy sins be forgiven thee. But there were certain of the scribes sitting there, and reasoning in their hearts, Why doth this man thus speak blasphemies? Who can forgive sins but God only?

"And immediately when Jesus perceived in his spirit that they so reasoned within themselves, he said unto them, Why reason ye these things in your hearts? Whether is it easier to say to the sick of the palsy, Thy sins be forgiven thee; or to say, Arise, and take up thy bed, and walk?

"But that ye may know that the Son of man hath power on earth to forgive sins, (he saith to the sick of the palsy,) I say unto thee, Arise, and take up thy bed, and go thy way into thine house.

"And immediately he arose, took up the bed, and went forth before them all; insomuch that they were all amazed, and glorified God."

I'm grateful that Christ is able to heal me from sin and I'm also grateful that He is able to raise me from my temporal beds of affliction as well.
Talitha is too young to be accountable and so has not yet experienced healing from sin. But she has been the beneficiary of Christ’s power to physically heal, lift, and support us through sickness. Just as in the story above with the man who suffered from both sin and the palsy, the healing of the body and the healing of the spirit often go hand in hand and can be mutually supportive of one another.
Whatever the healing may be, it testifies of Christ's power and love and tends to bend our eyes and affections heavenward to the source of all life and light.

Friday, June 25, 2010

Tali loves her mom

I took Talitha on a long stroller ride this evening.

So good to be out in the warm fresh air of summer's first week.

A little dog's sudden bark startled Tali. She was so excited to see the little dog named Quigly and we stayed and talked with the dog's owner for a few minutes while Tali and the dog talked and played through the fence.

Talitha has been even more attached to her mom than usual. They are very, very close.

Tali is warm and affectionate with all her family but nothing comes close to the hugs and kisses she gives to her mom.

It's the sweetest thing to see them hold each other close and sing, or talk, or play.

Or just sit quietly together.

Thursday, June 24, 2010

Small and simple...peas

We planted some pea seeds in the garden a few months ago and tonight, we found several peas that were ready to harvest.

Talitha ate one of the sweet peas--shell and all--and loved it.

Such a beautiful, warm day.

The moon was bright this evening in the twilight hours and Tali loved pointing and showing it to us.

Simple joys of life.

Nice to stop for a moment and take it all in.

Wednesday, June 23, 2010

Wait for weight

No weight gain yet.

Talitha's weekly checkup showed she's 10.9 kilos (24 pounds). We haven't seen a reading over 11 kilos for a long, long time.

Her blood counts were slightly higher and just enough in some areas to avoid another transfusion for this week at least.

It will just take time.

After a day of worry and stress, I see Tali's smile and realize she isn't the least bit concerned about her weight. She doesn't obsess about blood counts and never complains about no longer having a full head of hair. 

Not once has she asked us when her next spinal tap will be and there isn't even the slightest hint of a concern in her eyes about whether or not any cancer is still lurking in her body. 

She refuses to worry about tomorrow and is perfectly content to take the day as it comes. She has such a delightful time with her daily activities; her only regret in life seems to be that we must take time to sleep.

I feel pretty safe in saying Talitha is fine and will be fine—come what may.

It's her parents I worry about.

A few words from a song I sang as a boy with my family come to mind:

"...So I won't worry about tomorrow,
Have faith in just today.
My Father in Heaven knows my needs and sorrows.
I'll trust in Him, have faith, and pray."

Now, if I can just learn to live that way...

Tuesday, June 22, 2010


Talitha goes in to the hospital tomorrow for her weekly visit.

We are hoping for some weight gain. The nausea is less than before so we're hoping she can start getting some meat on her bones.

After reading scriptures together this morning, we got ready for family prayer and told Talitha that it was time to pray. She quickly said, "I coming" and then crawled over to sit by her mom. She continues to surprise us with what she says. We're so grateful her mind is working and coordinating well with her ability to talk, especially after the surgery initially caused her to go mute.

Some days, I can tell she's anxious to learn to walk again. Her legs seem to move just fine but she hasn't regained the balance or the confidence she had for those four months between when she learned to walk and when the surgery happened.

Like so many other things in life, I think it will just be a matter of time.

And patience.

Monday, June 21, 2010

People issues

I had a people issue to deal with this morning at work that on first view appeared to be a nuisance and a distraction. But while getting ready to go to work, I realized that how I choose to respond to life's "people issues" can be one indication of whether I want to walk the walk or just be a big talker.

Christ taught the parable of the good Samaritan to help us understand that "people issues" don't happen at convenient times. Sometimes there's even a monetary cost involved with the service rendered.

To further emphasize the point, it was the so called "righteous" individuals that passed by the man who had been beaten and robbed. These individuals that should have and could have been in a position to help, crossed to the other side of the road so as to not be inconvenienced or be made late for their appointments of the day.

Then to really drive the point home, Jesus had it be a Samaritan that came to the aid of the bruised and broken victim.

What an opportunity we have to embrace the sometimes uncomfortable, unpredictable world of helping to lift others. Each of us is uniquely positioned to make a positive difference when "people issues"--big or small--crop up around us.

I'm so grateful for all who have prayed and still pray for Talitha. It can't be easy to keep it up as the months keep ticking away.

We have been the thankful recipients of untold kindnesses and support as we have been figuratively laying there bruised and broken.

So many have embraced the inconveniences and troubles our "people issues" have caused these past 6 months. The support has been a god-send. Thank you for not crossing over to the other side and leaving us to deal with everything alone. We know that would have been easier for you.

Thank you.

Tonight was family night so we got together for a little lesson and to talk and share some time together. It was my turn to teach the lesson and after a while, everyone settled down and listened pretty well.

Toward the end, I made some comment to thank all the children for listening to such a crazy lesson (i.e. thank you for putting up with me) and out of the blue, Tali just laughed out loud.

Of course, that got everyone else laughing.

Tali either has a great sense of humor or lucky timing. Either way, we're so glad she is feeling well enough to participate with the family.

Sunday, June 20, 2010

Talitha's Turn

I just wanted to thank you for reading my blog and for praying for me. My Daddy loves to do the blog but he said it would be ok for me to take a turn.

I am doing really really good. I got to go to my grandma's for dinner tonight. It was really fun because it's the only place I've been besides home, the hospital, and an occasional car ride to pick up one of my siblings from whatever they're doing. I made my aunt take me around the house, I was just so excited to see everything!

But, my favorite thing was the little car outside that I could sit in while someone pushed me around in it. I think my dad and mom need to buy me one to have at home :o).

I fell out of my little chair outside on the grass and got a little scrape on the back of my head right by my scar. I was sad and told my mom all about it.

I am learning so fast right now. I like to learn ASL for fun and if you sign "I love you" to me you will most likely get a "love you"out loud from me. My family loves to do this with me and they think I'm really cute.

Anyway, thanks again for following my journey. It has been kind of rough sometimes but I have felt strength and love from your prayers and from Heavenly Father.

And on this Father's Day I just want to tell my Dad, I LOVE YOU and you do a great job on the blog. Even if mommy calls some of your entries a novel or sermon. (Just don't listen to that part, she's usually right about everything else!) I don't think there's another Daddy in the whole world who can sing like you and tell me stories like you can. You're the best!

Love, Tali

Saturday, June 19, 2010

Grateful for Fathers

In just a few minutes, it will be Father's Day.

I can't help but feel a surge of gratitude for both my Heavenly Father and my dad here on Earth.

I feel especially fortunate to know that I have a Heavenly Father because so many have forgotten this essential reality.

I also feel extraordinarily lucky to have a dad who has been my hero ever since I can remember. He's shown me by example how to live a life of purpose and integrity. God has always been important to my dad, so consequently, God has always been important to me.

It's an awesome responsibility to follow in the footsteps of my dad and be true to my Heavenly Father. I didn't realize how tough it would be enter the world of fatherhood and face the challenges of raising a family through thick and thin.

I'm so grateful to Audrey for taking a chance on me. She's an amazing woman.

And of course, I wouldn't be a father without the children the Lord has blessed me with. With three--soon to be four--teenagers in the home my children mostly think I'm a nerd. But somehow they still love me and put up with me.

And my two non-teenage daughters? Well, they pretty much have me hopelessly wrapped around their little fingers.

Afton, who was the youngest for eight years, gives the best hugs and even calls me on the phone and encourages me and tells me she loves me.

And Talitha? Well, you know all about her. She's been our little surprise angel. She's been teaching me for the better part of her whole life what it means to exercise faith in Jesus Christ and trust God not matter what.

Friday, June 18, 2010

Neighborhood kids

Talitha was outside with her sister, Elisa, when she saw some young children walk by. She wanted so much to go wherever those children were headed, especially when another of her sisters, Afton, left to join the group of youngsters.

Tali called out to them with her best little "hi!" (I think she tried to say "hi" to every last one of them in the group.)

But alas, it wasn't going to happen. At least not today.

The children in our neighborhood have been so good and kind to Talitha and all our family. Everyone knows to keep their distance to help cut down on the chance of Tali picking up some kind of bug while her immune system is so compromised. But even from a distance, the smiles are wide and warm.

At church I hear the children pray for Talitha and many of them still wear their light-blue wrist bands inscribed with Tali's name and reminder.

Children are so pure and innocent. They are naturally kind and loving.

No wonder Jesus said, "Suffer the little children to come unto me, and forbid them not: for of such is the kingdom of God." (Mark 10:14)

I'm grateful there are little children in our neighborhood for Tali to look up to and want to join in with.

If she grows up as fast as our other children, we better not blink.

Thursday, June 17, 2010

Good Things to Come

I enjoyed some one on one time with Talitha from about noon till I put her to bed. The rest of the family took some time to enjoy a much needed outing.

I hope that in a few months, Talitha will be able to join in on such activities but for now, we have to continue keeping her secluded.

Tali and I especially enjoyed a few trips to the back yard to play on the trampoline, watch the birds, and look at the moon in the evening sky. Her enthusiasm and wonderment for life and everything around her is a joy to see. Her facial expressions communicate more powerfully than words.

After her nap, she wanted to sit on a little chair on the lawn. Her camera-happy dad just had to get a picture. But try as I might, I just couldn't get a good picture with her eyes open. She kept saying "too bright" and I kept clicking "too late".

After putting Talitha to bed tonight, I had some alone time since the rest of the family wasn't home yet. Among other things, I had the chance to do some personal study and reflect a bit.

I think sometimes you hold on trying to be brave for so long that you don't realize how close your emotions are to the surface until something triggers you and the flood gates open.

I had such a trigger moment tonight when I came across a video about a young father facing the trials and stress of life like we all do. The story is a personal account told by one of the leaders of my church. Everything is said so beautifully, I knew I had to just share the whole thing instead of just trying to awkwardly relay what it meant to me.

I hope that it might touch you in some small way like it touched me.

Good Things to Come

To see the video, click on the link right above this line that says "Good Things to Come".

Wednesday, June 16, 2010

A bump in the road

Some of Talitha's blood counts are dropping again so, while she was at the hospital today for her weekly review, they gave her neupogen to stimulate the white blood cell and ANC production.

If she get's any kind of a fever, they will admit her to the hospital, especially at times like this when she is severely neutropenic (i.e. her ANC count has dropped clear down to 300).

Evidently, this is not that unusual this close to the end of treatment. So, we will continue to take the outlined precautions and work to get Tali better.

Audrey asked about the central line issue I mentioned in yesterday's blog post. Again, they were not that concerned about it. Talitha has not been able to gain weight  and so there's not much meat on her bones that would've otherwise better hidden the central line within her chest wall.

On the bright side, Tali seems to be eating a little better and rediscovering some foods she hasn't eaten in a very long while.

Tuesday, June 15, 2010

Fixed it

Talitha was with her mom this evening when she noticed that a strand of hair had fallen down onto Audrey's face. Tali looked up and said, "hair....face". Then after a moment, she reached up, pushed the hair back up into place and said, "fixed it."

I love sweet and tender moments like this.

Life can seem so complicated. What if we could just notice a few more of the little things in life happening every day around us and use them as the perfect excuses to lift, help, and encourage others.

Talitha goes in for her weekly hospital/clinic visit tomorrow. Audrey noticed that the inserted end of Tali's central line is kind of rubbing up against her skin from the inside. We've never noticed that before so hopefully it's nothing of concern but we'll ask about it while at the clinic.

Monday, June 14, 2010

Slowly but surely

Talitha's central lines are not being used as intensely now that she's home. Still the lines must be flushed daily for maintenance so that they will remain viable until the time comes that they will not be needed and can be surgically removed.

Talitha enjoys spending a few minutes outside each day as the weather permits. The sunshine and fresh air were fabulous today.

Every once in a while, she seems to want to stand or to balance but just can't quite do it. I think it will all come back to her slowly but surely.

Slowly but surely, our family is decompressing and getting adjusted to all being together again. Don't know if we'll ever catch up on sleep but for now, we're just grateful to have a moment to catch our breath.

Sunday, June 13, 2010

Seeing the dolphins

We have friends who are trained in the art of sail boating. In fact, one of them has a captain's license for boating on the ocean. I love to hear their sailing stories some of which are quite intense given the unpredictable nature of weather, winds, and waves.

From time to time and especially during the scary times on the sea, my captain friend explained that he would say a prayer. Usually within minutes--if not seconds--of praying, dolphins appear out of nowhere and in places where you wouldn't expect dolphins to be. And the dolphins always bring reassurance that things will be ok. And they are.

To hear of these experiences with prayers and dolphins, I'm convinced it's statistically impossible to explain them away as random or coincidental. This is one clear way that my friend sees the hand of the Lord in his life.

I've become more aware that the Lord is not trying to hide from us. He wants us to seek Him but He's not hiding.

I've lost count how many times I've prayed and asked the Lord to please communicate with me in a way that I will "get it" and understand. I've even said things like, "please make it obvious."

And He has.

We may not each have expertise in actually sailing large bodies of water but life itself still provides plenty of winds and waves that can toss us around pretty good. When these storms of life threaten to knock us down or drown us in despair, grief, pain, or loneliness can we see the "dolphins" God sends in response to our pleas for help?

Our "dolphins" have come in many forms and unexpected ways. There's no explaining away the Lord's hand. Our pleas from the hospital and now from home have been answered with reassurance that the creator of all things, even Jesus Christ, can and does calm the raging seas and calm the troubled heart.

I'm grateful that our turbulent journey with Talitha has had an ample supply of "dolphins" along the way. I look for them now.

And I'm seeing them more and more.

Saturday, June 12, 2010

Taste buds

Talitha wasn't much interested in a nap today. She tried twice but each time found it more interesting to converse with imaginary friends while standing and shaking the rail of her crib.

At least it was her HOME crib!

Talitha's appetite is improving ever so slightly. She still has a trigger-happy gag reflex but at least not the obvious nausea.

We've been told that it can take a hundred days or more for the taste buds to return to normal--and not have a sort of metallic taste--after the kind of chemo therapy Tali's had. It's possible since she's so young that her lack of experience with a wide variety of different foods means she doesn't have a basis for comparison between what the food tastes like now versus what that same food used to taste like.

I just hope that her growing database of food reference points doesn't have permanent metallic tainting.

I'm grateful Tali's body seems to be strengthening and hope to soon begin seeing re-growth of her hair and eyelashes.

But with or without hair, she's sooo beautiful to us and we're grateful to have her with us.

Friday, June 11, 2010

Counts are looking good

The home-health nurse came today and drew a blood sample to test Tali's counts. Her platelets are high enough that she doesn't need another transfusion yet. All the other blood count numbers also look ok for the moment.

She has a runny nose--comes and goes since she started her chemotherapy back in January--but no other signs of being sick or having an infection.

She loves being home and is quite good at wrapping us around her little finger with her smiles and personality every chance she gets.

Thursday, June 10, 2010

Audrey...just for the fun of it

Talitha can say her sister's name--Afton--really well. She says the other siblings names too but just not as clearly. She's also good at saying "mommy" and "daddy" in their common varieties.

Tonight, just for fun, we asked Tali, "Where's William?" She pointed to me. "Where's Audrey?" She pointed to her mom.

Then clear as clear, she said "Audrey." Well this shocked her mother who laughed and said, "What did you say?" To which Tali replied, "Audrey".  Because everyone was so well entertained, she just kept saying "Audrey" over and over.

So now, whether we like it or not, Talitha's parents are affectionately called "Daddy" and "Audrey".

Wednesday, June 9, 2010

Finding more life

Dr. Pulsipher from the Bone Marrow Transplant team is recommending that we get Talitha going with physical therapy. It seems that Talitha's legs can move ok but the ability to balance just isn't there anymore.

With older siblings around, Talitha has plenty of opportunities to move and be active. And I hope lots of activity and practice with the large motor skills will help stimulate the cerebellum to fully regenerate and repair.

From time to time I think about how we found Talitha's name in the bible. While the actual word is found only in Mark 5:41, the story of Jesus raising the daughter of Jairus is also found in Luke chapter 8. The words of verse 50 especially grab my attention: "Fear not: believe only, and she shall be made whole."

That Christ has the power to raise us from our afflictions whatever they are and make us whole is certain. Seeing so much evidence of His power inspires me to want to be better and do better and invite others to find Christ so they will have the same hope I have. But having hope in Christ is not the same as wishing to get our way. Being willing to accept God's will is as important as knowing He has the power to do all things.

Through the power of the resurrection and atonement, Christ has saved all of us from physical death. Now He calls to us in our day as in times past with the simple words "come follow me" so that we may also be saved from spiritual death.

I love that Christ is all about "life".

The more I find Christ, the more I find life. 

Tuesday, June 8, 2010

The elephant

Audrey took Talitha to the Bone Marrow/Oncology Clinic at the PCMC today for her first post-treatment review. All her blood counts were ok except for the platelets so they gave her a transfusion to bring those numbers up.

Talitha will go weekly to the Clinic to meet with the Bone Marrow Transplant team for about the next two months. Then they will transfer her back to the Oncology team to do the next brain and spinal column scans along with any other protocol testing.

The "elephant" in the room is an interesting shade of grey.

Did the treatments work? Is the cancer gone?

Some days, I'd rather ignore the elephant. But it's a big elephant and sometimes he's noisy and pushes me around.

There's a beautiful hymn I found to help me tame this unruly beast. It's called "When Faith Endures":

I will not doubt, I will not fear;
God's love and strength are always near.
His promised gift helps me to find
An inner strength and peace of mind.

I give the Father willingly
My trust, my prayers, humility.
His Spirit guides; his love assures
That fear departs when faith endures.

Monday, June 7, 2010

In control

We had a family planning meeting tonight.

School is out for the summer. Talitha is through with her protocol treatments. Everyone is living under one roof again. Time to get re-acquainted as a family.

I tried to keep everyone on task with the planning but Talitha just kept distracting everyone. Tali's at a fun age where she likes to repeat things she hears. (This is cute most the time as long as older brother and sisters don't start pushing the envelope with non-age-appropriate teenager talk that gets them the "evil eye" from mom and dad.)

So, I must confess, the minutes passed without completing the summer planning session. Everyone seemed more interested in playing, and talking, and laughing.

I guess this is where I get to take a chill pill and just be grateful. After all, we've not exactly been living according to some planned script for any real stretch of time this entire year. We've had to trust that God has a master plan and gives us our daily tasks along with our daily by day.

The biblical manna from heaven didn't come in batches of weekly supply. So I might learn to be content with my daily supply and trust in Him to provide as well tomorrow as He did today. (Better a daily supply from Heaven than a weekly or monthly stash by the arm of flesh.)

Perhaps one day I will see that the only thing I control is the turning of my control (my will) over to the Lord. Then and only then will things truly be in control.

Sunday, June 6, 2010

Thank you!

When Jesus was asked which was the greatest of the commandments, he answered, "Thou shalt love the Lord thy God with all thy heart, and with all thy soul, and with all thy mind. This is the first and great commandment. And the second is like unto it, Thou shalt love thy neighbour as thyself. (Matthew 22:37-39)

It's easy for me to imagine what it might be like if these two commandments were kept faithfully because we have been surrounded by examples of just such Christian service toward Talitha and our whole family.

Once in a while I've made mention of the kindnesses shown our family by loving neighbors, family, and friends. I hardly dare mention specifics anymore because I know I'll mistakenly leave someone out. You've made both our hearts and our burdens light and for that we are in your debt.

You must know that we pray for you and ask that the Lord might bless you a thousand fold for your thoughtfulness and support that means more to us than you could possibly know.

We will never have the means to repay you or thank you each in the individual and personal way that you deserve. You have inspired me and shown me what's possible through your examples of loving in a Christ-like manner.

Thank you.

We can't wait to have Talitha with us at church again and for her to be out and about like our other children. She seems so well now it's hard to imagine the risks she faces are so steep. After all, she's laughing and playing and doing what I would expect a 22-month old to do.

The only outward signs of the battle are the scars on her head where the tumor was removed and where the external shunt was placed to relieve the pressure from the water in her brain. (Her hair will cover these scars up when it grows back in.) She also has a small scar on her chest where the first central line was installed and she still has her 2nd central line installed and will continue to have that, I imagine, for some time.

Other than that, the only other signs of a problem are when she gets shaky when her blood counts are low and the fact that she has to learn to walk again.

So it will still be several months of working with her to get her immune system functioning again and then we hope to be less restrictive in where and when she can go places and what precautions have to be taken.

Talitha doesn't appear to be in pain anymore--other than when she doesn't get her way (which is rare at the moment). There is still the discomfort that comes from changing the dressing on her central line and taking certain medicines but all in all, she is coping very well.

We thank the Lord for bringing us through the fire to this point and thank each of you for your hand in making the heat of the flame more bearable.

We love you!

Saturday, June 5, 2010

Home and Telethon

Talitha slept so good in her own bed last night in spite of the abundant exuberance all around her. (We have to remind the older kids that there's a baby in the house again so they'll quiet down a little earlier than what standard-teenager-time calls for.)

Everyone is now adjusting to the idea that Talitha will be home for good instead of just a few days here and there.

We don't really know for sure what our next steps are as far as follow-up tests and scans. Our next appointment with the oncology clinic is next Tuesday so I hope to be able to report more then.

Our experience tonight with the annual Primary Children's telethon on KSL Channel 5 was both interesting and heartwarming. We had the chance to meet some of the other children and their families that were interviewed. We are so grateful for Primary Children's Medical Center and the extraordinary work and service they provide.

Scott Haws, one of the anchors for Channel 5 spent a few minutes with us before it was our turn to be on air. He had notes about Talitha but took the time to speak with us and get us loosened up a bit so we wouldn't feel quite as nervous. Very nice, very professional.

It helped that the cameras did close-ups mostly of Talitha during our short, on-air segment. More than anything, we just wanted to support Primary Children's in their quest to raise sufficient funds so they will be able to continue to provide for the needs of children regardless of their respective family's ability to pay or not.

We are big fans of Primary Children's now. Never, ever thought we'd need them and would have been lost without them.

Friday, June 4, 2010

Three for three!

Tali engrafted on the 11th day after transplant...again. And because she never stopped eating and drinking...she got to come home!

The look on Tali and her mom's face says it all! She made it through the treatments and is now HOME!

When a cancer patient finishes his or her treatment, everyone on staff gathers round a special bell and cheers as the bell is rung three times. (Talitha rang the bell once but all the loud cheers and clapping made her shy. So her mother stepped up and rang that bell so there'd be no mistaking!)

After the little bell ringing ceremony, Talitha's brother and sisters gathered by the bell in a siblings pose. (They are all so excited to have their baby sister back.)

The only snag happened when Tali saw the playroom she used to hang out in during the induction cycles of chemo. She's not been able to visit her little stomping ground for ages since the bone marrow transplant cycles kept her quarantined in her hospital room.

She insisted on playing in the playroom and hollered plenty at the suggestion we go home. She had business to take care of and wasn't about to be deterred.

But finally, the wagon ride procession from the 4th floor to the car got underway. Oh to be outside for real instead of just looking through the window!

Three for three…and the victory bell is rung. In every way a team effort, so the celebration and cheers are for all of you.

The war is not over but this battle is won and so we say “Yay” and carry on.

Thursday, June 3, 2010

Look and Live

The white blood cell counts and the ANC are a little lower than they were at this point on the first two transplant rounds but there is still strong optimism that she will jump high enough with tomorrow morning's blood test that she can be cleared for departure.

But if not...

That's ok.

Tonight, I asked Audrey if she thinks Heavenly Father ever wishes we didn't get so attached to this life. I mean, in comparison to the eternities, this life on Earth really is just a small moment. But the deep friendships and family ties we form here make it hard sometimes to remember that this life is only a test...a probationary period. The "real" thing is yet to come.

It's also easy, I think, to focus a lot of attention on physical wellness but maybe neglect the even more important spiritual wellness.

I'm reminded of the biblical accounts of Moses raising up a brazen serpent on a pole to save the children of Israel from physical death on account of their having been bitten by fiery flying serpents. All that the afflicted people had to do in order to be healed physically was to look at that serpent on the pole. Sadly, many died because they didn't believe something as simple as just looking could save them.

The real significance of this "Look and Live" experience in the ancient wilderness was to point the hearts of the people to Christ who was to come. True, the purpose of the Mosaic law was to point to the great and last sacrifice of the Lamb of God, but this experience with the poisonous serpents was to emphasize the point--then and now--that it's as easy to look to Christ and live spiritually as it was to look at the brazen serpent and live physically.

"And as Moses lifted up the serpent in the wilderness, even so must the Son of man be lifted up: That whosoever believeth in him should not perish, but have eternal life. For God so loved the world, that he gave his only begotten Son, that whosoever believeth in him should not perish, but have everlasting life." (John 3:14-16)

"If ye could be healed by merely casting about your eyes that ye might be healed, would ye not behold quickly, or would ye rather harden your hearts in unbelief, and be slothful, that ye would not cast about your eyes, that ye might perish? If so, wo shall come upon you; but if not so, then cast about your eyes and begin to believe in the Son of God." (Alma 33:21-22)

"Do not let us be slothful because of the easiness of the way; for so was it with our fathers; for so was it prepared for them, that if they would look they might live; even so it is with us. The way is prepared, and if we will look we may live forever." (Alma 37:46)

I'm deeply grateful for the physical healing that is happening with Talitha. And tonight, I'm also thinking of all the spiritual healing that has been taking place over these last months. God really is a God of miracles and tender mercies.

My prayer tonight is that we may with a brightness of hope look to Christ and live in every way.

Wednesday, June 2, 2010

The good and bad of Benadryl

Talitha had a hard day especially in the morning.

She needed both platelet and red blood cell transfusions which wouldn't have been such a struggle except that Talitha fought going to sleep.

Let me explain. Because of common side effects of transfusions--some of which can be dangerous--they give Talitha medicine like Benadryl in advance of the transfusion(s) to ward off allergic reactions. Benadryl always makes Talitha tired. Most the time, she just falls asleep after receiving the medicine and things proceed smoothly. But once in a while, she fights the drowsiness. Then the feeling of being half in control / half out of control just makes her antsy and upset.

There's definitely an angel side to Talitha and a...well, shall we say...not so angelic side that tends to show up when she's over-tired or is fighting the effects of Benadryl.

So, it was a bit of an everything-is-stepping-on-my-nerves kind of day. Guess that's what we get for thinking Talitha is almost done with treatment. It's been going on for "ages" but now suddenly can't get here fast enough.

I think everyone is done with hospital living and just wants to be home.

The highlight of the day for Talitha was her bath this afternoon. Make lots of bubbles and just have fun.

(I think she likes bath time so much now because it's her only ticket out of her quarantine room. The bathtub room is just a few doors down and across the hall. But hey, with an imagination like Tali's, it might as well be on a different planet.)

Last Wednesday in the hospital (?!)


Tuesday, June 1, 2010

No small miracle

There seems to be no end to the innovative things that can be done in a single hospital room.

Talitha explored the possibilities of establishing a new room within the room UNDER the crib but that was too stressful for her mom so that expedition was short lived.

The big thing today was sitting on the window sill. Tali sat there for the longest time watching birds, cars, and people from her 4th floor perch. Such enthusiasm as the world continues to unfold before her.

The closet doors in the room are covered with white-board material and Talitha spent a good while in front of those doors discovering how fun it is to color on the slick surface.

A while back, Tali started imitating the techs that come in and take her vitals and then write their findings with a pen on paper. She likes to ask for a pen and paper whenever a tech or doctor comes in the room which gets a few of them chuckling now and then.

Talitha insists we hold her hands so she can walk around the room frequently throughout the day. She hasn't regained her sense of balance yet and is very shaky and nervous with the walking thing. I think she remembers being able to walk and wants to get there again.

I'm glad she is interested in walking practice and initiates it so we don't have to make it a big deal.

At work, one of my friends kind of caught me off guard with an unusual question. He asked, "If you hadn't discovered the tumor, would Talitha still be alive?"

The sobering answer is "no".

The question didn't bother me, though it did get me to reflect for a few moments.

The reality that Talitha is still with us is no small miracle. And without Tali's intuitive mother, we wouldn't have ever asked my doctor brother the questions that led to specific inquiries at the Utah Valley Health Clinic that resulted in a tell-all MRI the next day on December 23.

How grateful we are for the last (nearly) six months with her that--but for the grace of God--we wouldn't have had.