Saturday, July 31, 2010

Twinkle Twinkle Little Star

We found another way to get Talitha out of the house and safely around more people today.

Last year, a few months before Tali's tumor was discovered, Audrey told the family she was going to prepare to run a 5 kilometer race sometime in 2010 and invited the rest of us to prepare with her.

True to her word and in spite of the unforeseen challenges, Audrey was diligent in getting ready to run a race.

Today Audrey and our three oldest children ran their first 5K race called Cooper's Run--in memory of a little boy who was hit by a car and died exactly one year ago.

After, the real race, everyone who wanted to was able to run (or walk) in a one-mile family fun run. Thanks to a kind neighbor who let us use their fully-enclosed child jogging stroller our whole family was able to participate.

Talitha loved it!

She saw dogs, balloons, a helicopter, fire trucks, and lots of other children. We kept a friendly distance. :-)

Talitha was in such a good mood today, she even sang a song for us. (See video below.)



She definitely keeps us smiling!

Friday, July 30, 2010

About seven steps

Audrey called me at work all excited.

Talitha had just taken about seven steps unexpectedly all on her own!

When she takes steps, her left leg seems a bit stiff and awkward. The trauma of the operation to remove the tumor back in December left her with very little movement on her left side. Tali is right handed so it's hard to see any problem with her left arm and hand but when it comes to walking, both sides kind of have to work together as equals. I think that's why it's easier to detect a deficiency.

We are hopeful her brain will continue to heal and work well with her large motor skill development.




In these pictures, she’s trying to smile but her mouth is full of pickle. (She loves pickles!)

Maybe you can tell that her hair is starting to grow more noticeably?

Now--especially in person--you can see the top of her head getting darker without having to squint in just the right light to imagine hair.

Yay!

Thursday, July 29, 2010

The children

I was on my way out of town on a business trip when Audrey texted me the good news that Talitha is cancer free.

Ever since then, my emotions have been close to the surface.

What a joy to return home this evening and hug my children.

Some of you know that in my church, we have opportunities to serve in various ways so that no one person is completely overwhelmed with responsibility since there is not a paid clergy.

One of my assignments each Sunday is to teach inspirational songs to the young children ages 2 to 11 in their different age groups. I have loved doing this for nearly four years now.

Working with children is a joy and a delight. Some weeks I feel that I am learning far more than the children. Their faith knows no bounds and when I hear them praying for Talitha I’m so touched and grateful because small children are so close to God.

While getting ready this morning, I thought of several of these children, a few of whom are younger than five who have told me they pray for Talitha every day. I choked back some sudden emotion as it hit me that God heard the prayers of these children and lovingly answered their faithful petitions.

Many of these children will be peers to Talitha as they grow up in a world that is stumbling and will need the strength of these young warrior spirits who are already exercising faith in Christ. They are learning in their youth to build their lives on the one sure foundation--the rock of Christ. Trusting in the Lord will not be new to them and they will know from experience where to turn when the going gets tough in ANY area of their lives.

"And now...remember, remember that it is upon the rock of our Redeemer, who is Christ, the Son of God, that ye must build your foundation; that when the devil shall send forth his mighty winds, yea, his shafts in the whirlwind, yea, when all his hail and his mighty storm shall beat upon you, it shall have no power over you to drag you down to the gulf of misery and endless wo, because of the rock upon which ye are built, which is a sure foundation, a foundation whereon if men build they cannot fall." (Helaman 5:12)

I thank the Lord for little children. They lift my spirits and show me by their faith that Heaven doesn't have to be so far away.

Wednesday, July 28, 2010

Alphabet Soup

Talitha is doing amazing.

Today she had some more tests done to qualify for the Provo Early Intervention Program that will do the physical therapy for her (if we pass). It took longer than we had wanted, with all the interviews, appointments, and assessments. But, it looks like we are finally done with all the testing and so now we wait to see if we qualify. I can't imagine not passing since Talitha is not walking and is almost two (even a child could tell you she needs some help :o)...all of this testing thing is really for their check off list of procedures.

Frustrating.

On a happy note, the last couple of days we have discovered that Tali knows how to sing the entire alphabet with very little promptings. It's amazing. She was just sitting with me and started singing away. I couldn't believe it. She must like the tune (it is also the tune to "Twinkle, Twinkle Little Star" which she knows).

Speaking of ABC's, have you ever had a bowl of alphabet soup and tried to spell your name or some other word only to find out you're missing a letter? Isn't it frustrating? Until you realize you can eat part of another letter to make a new letter and complete your word.

I think that it's natural to try and "fill in the blanks" or try to make something out of the unfinished. Your brain just works that way.

I think that is what we feel about Talitha not being able to walk right now. It just doesn't make sense. She's smart and coordinated in every other way that we can see, it's just that darn walking.

It's hard to be patient. She wants to walk. Saturday William and I spent a long time having her walk back and forth to us--much like you do with an almost-1-year old. She loved it. She was laughing and chattering and turning around as fast as she could to try again. The most she took was three steps.

I know it will come, until then I'll just eat my soup.

Tuesday, July 27, 2010

Emotions and gratitude

So hard to put in words the feelings and gratitude.

I don't know what the future holds but for now, the Lord has made it possible for us to hold our baby on this side of the veil a little longer.

The gratitude I feel for the Lord and for all of you who have helped us and are helping us in every imaginable way is deeply humbling.

Thank you.

This journey has changed my life.

Audrey and I have tried to diligently and faithfully to record this journey and the many miracles we've witnessed. 

We will continue to report daily on Talitha's progress at least until the 100-day-after-treatment mark.

To think that this post and the blog in the coming days will be within a cancer-free context is both exciting and surreal.

While we celebrate the extended life Tali has been granted, we are acutely aware of many--both publicly and privately--still facing intense trials and hoping, praying for healing and relief.

You have prayed for us; we are praying for you.

My hope is that even as Talitha is restored to full health, may we remember that the creator of all things--Jesus Christ--really has overcome death and hell. Whether in this life or the life to come, all will be raised by Him and the infinite power of His resurrection and atonement.

I never, ever imagined that the story of Jesus raising the daughter of Jairus from the dead would take on such personal significance.

I feel we have just witnessed a first-hand re-enactment of that sacred, holy story.

"And he took the damsel by the hand, and said unto her, Talitha cumi; which is, being interpreted, Damsel, I say unto thee, arise." (Mark 5:41)

Monday, July 26, 2010

Happy Happy Day

"Oh happy, happy day!"
This is a line from a play that our family says to each other when something great has happened. (I love how families have little things that make them unique --things that an outsider would not understand or think was funny.)

We had a happy, happy day today.

Talitha does not have ANY cancer cells showing up in her spinal fluid!!!!!!

When I asked about it this morning the Dr. and NP were all casual about it and I was freaking out. They said that they had expected her to not have any cancer cells, a relapse at this point would not be a good thing. They said that they were pretty confident in the procedures that she went through. They said that they expect that she will have no cancer cells show up in her 100th day check also.

I was amazed. Stunned. The way that everyone talked about it earlier made the word "radiation" come up as if they expected that she would have cancer show up and we'd have to zap it when she was old enough.

I don't understand it all, but today we'll take "cancer free."

Talitha's MRI went well and looked normal. Her hearing test read a little better than last week's test and so for now, no hearing aids recommended. And you know, I'm sure their "procedures" are great and all but I happen to feel we're experiencing a miracle.

Thank you for believing.


As I was driving home a song about miracles kept popping into my head. It's from Disney's "Prince of Egypt"--the story of Moses and the Children of Israel. Here are a few of the lines:

Many nights we pray
With no proof anyone could hear
And our hearts a hopeful song
We barely understood
Now we are not afraid
Although we know there's much to fear
We were moving mountains long
Before we knew we could
There can be miracles
When you believe
Though hope is frail
It's hard to kill
Who knows what miracles
You can achieve
When you believe
Somehow you will
You will when you believe

Sunday, July 25, 2010

Cheerfully

I loved going to church today!

The speakers were so excited about Christ. Their eyes shown with enthusiasm and encouragement.

I needed that.

Tomorrow is Talitha's first post-treatment MRI. While she's sedated for that, they will also do another hearing test.

We may also find out the results of last Wednesday's spinal tap.

Thank you for the kind words and expressions of hope and encouragement. You lifted and helped us make it through a nervous week.

One of our friends shared this scripture with us a while ago and I feel like it's the perfect expression tonight, especially after such enlightening church meetings today:

"Let us cheerfully do all things that lie in our power; and then may we stand still, with the utmost assurance, to see the salvation of God, and for his arm to be revealed." (D&C 123:17)

Here's to a cheerful week!

Saturday, July 24, 2010

Yucky Bear

When Talitha had her spinal tap on Wednesday, they gave her a little white stuffed bear with tiny green shamrocks. The bear's name is "Lucky" according to its tag.

Well, Tali loves her little bear and likes to call it her "Lucky Bear". But since her "L's" sound like "Y's", what we hear is "Yucky Bear".

We try not to laugh but when she goes on and on about her "Yucky Bear" this and her "Yucky Bear" that, we can't always keep the giggles in check.

But maybe Tali is really one step ahead of us.

Maybe she gets that it's her lucky bear to help her "bear" with yucky stuff like spinal taps.

You know...her Yucky Bear.

(Ok...it's been a long day.)

:-)

Friday, July 23, 2010

Parent trap

Still no word from the lab on Tali's spinal fluid.

With it being a holiday weekend in Utah for Pioneer Day, a lot of businesses were closed today, which may have slowed things down at the lab with people taking time off.

Talitha is keeping us entertained while we await the news.

She likes to tell her dolls and milk and other important items in her life that she loves them and wants to kiss them and hug them.

While driving with Talitha and her mom today, I heard Tali repeat over and over "ok sweeetie" in response to her mother.

Tali has a dangerously sweet little voice that she's not afraid to use with a perfect kind of timing uncharacteristic for her age.

We are in trouble.

We know we're in trouble.

Parents should know better than to get caught in such devious traps.

I fear we're walking right into it...

...and loving it!

Thursday, July 22, 2010

Broken Things

Earlier this week, Audrey had me listen to a song by Kenneth Cope called "Broken".

It's a really touching song inspired by a sermon given by Jeffrey R. Holland in 2006 called Broken Things to Mend.



Today I found myself thinking about Christ and His power to lift and heal and rescue us. It has often been that when I am most broken down from the trials of life that my soul is the most open to Him.

Traveling this road with Talitha has been perhaps the most humbling journey I've been on. I think it has broken me in ways I think I needed breaking.

I'm a little less quick to judge now. I don't take things for granted like I used to. I've had to depend on the Lord more than what I was comfortable with. And I've had to learn to let others help me and my family when I would rather be the one helping or giving.

I'm finding that when my walls of pride, stubbornness, and sin break, then is the time I feel most whole. And Christ is the one that makes healing and wholeness possible.

So in my own way, I agree with Kenneth Cope: "I believe that God loves broken things."

Wednesday, July 21, 2010

Return and report

Thank you for your prayers and encouragement.

Talitha started off her day with a trip to the PCMC in Salt Lake for a non-sedated hearing test at 8am. The results of the hearing exam have them concerned enough about Tali's high-pitch/frequency sound registry that they are ordering a more thorough sedated hearing test for when she’s in the hospital next week for her follow-up MRI. 

After the hearing test, Tali had a checkup at the BMT/Oncology clinic. Her ANC has climbed only slightly to 800 but the rest of her blood counts are looking good.

She gained more weight from 11.3 to 11.5 kilos (25.3 lbs.) Yay!

The final test for the day is the one we're holding our breath about: the sedated spinal tap/lumbar puncture.

We won't know the results from the lab for several days but are hoping for the best.

We're thinking positive.

Tuesday, July 20, 2010

"Be strong and of a good courage"

Tonight I need to borrow the Girl's Camp theme that the young women and their leaders reported on in church a couple Sundays ago:

"Be strong and of a good courage; be not afraid, neither be thou dismayed: for the Lord thy God is with thee whithersoever thou goest." (Joshua 1:9)

Tomorrow's "spinal tap" will be the third one Talitha has received since January, the first since completing her treatments.

It always takes a few days to get the lab results from these "lumbar punctures" but we are hoping that this time the spinal fluid will be clear of roaming cancer cells.

Kind of nerve racking if I think about it too much. Just have to keep telling myself to "Be strong and of a good courage; be not afraid..."

That's why I appreciate the example of Joshua. He paid attention to what the Lord was trying to teach him and later on was able to say with confidence: "choose you this day whom ye will serve; ...but as for me and my house, we will serve the Lord. (Joshua 24:15)


I like that.

Thank you, ALL, for your prayers.

Monday, July 19, 2010

A family night picnic

We got adventurous for family night and headed up Provo Canyon for a picnic dinner and to play games up where it's not quite so hot.

Talitha was SO excited to get out of the house.

When I came home from work, I found her by herself, all ready to go, with her hat on, rocking herself in the recliner.

She kindly obliged me for a quick picture.


Once we made it up to one of the canyon parks, we set things up for our little dinner and Tali patiently rested her head in her hands waiting for the fire to make some nice coals for roasting hot dogs.


And then, once dinner was all over and the kids started playing Frisbee and kicking a soccer ball, Tali could not get down out of her high chair fast enough to join them. She walked as fast as her little legs could go (with her mom's help) back and forth in and through and around her siblings chattering and squealing with delight.


Finally, after things settled down a bit she went on a little walk with her oldest sister over to the other side of the campfire where she found the perfect spot to lean against a little rock and just have fun talking and being outside.


We had SO much fun getting away for a couple of hours and enjoying some of God's most beautiful handiwork.

Talitha had the time of her life and was so content on the way home she was completely relaxed and just beaming with her smiley eyes.

I'm so grateful to the Lord for giving us this time to learn and grow and love.

I feel his comforting hand in our lives right now and it has brought me a peace that's hard to describe.

Praise be to God.

Sunday, July 18, 2010

Hair!

Yesterday afternoon, when the sunshine was coming in Talitha's room just right, Audrey saw some microscopic blond fuzz on Tali's otherwise shiny head.

I've known the excitement of little seedlings pushing up through the ground soon after planting. But signs of new life in my daughter?! Wow...nothing quite compares to that!

Sure I've seen hair grow on my babies before. But when something is lost and then found, it seems all the more dear. I don't take it so much for granted as before.

We are hoping for more good news to report this week as Tali's next tests are on Wednesday.

Saturday, July 17, 2010

Thy will be done

I have been following several blogs of families experiencing the intense challenges that come with fighting for the life of a child.

I've been deeply touched by their faith.

Sometimes the result of the fight was not what these families were hoping for. But in every case, gratitude for miracles has been expressed and lives have been changed for the better.

Without being able to see as God sees, there is no way to understand how it is that He leaves one child here and takes another home to be with Him a little sooner.

The faith and prayers have not been greater or less in either case.

Yesterday, one of the little children I recently began reading about returned home to be with Heavenly Father. I can't even begin to imagine the heartache of this little girl's mother as she described saying goodbye.

What touched me perhaps the most was her complete submission to God's will after witnessing the miracles that had been keeping her daughter alive and knowing that hundreds of thousands of prayers around the world had been offered on behalf of her little angel.

In fact, the day before her baby returned home to Heaven she wrote, "It’s as if her valiant little spirit is just staying for us. Just staying long enough for us to realize that this is not the end." http://patrickandashley.blogspot.com/

What incredible faith and humility!

We've been so blessed and strengthened by the examples of valiant souls all around us who have not yielded to the trials of faith but have stood their ground relying completely upon the arm of Christ--the only sure and safe path through grief and pain.

Thank you.

Friday, July 16, 2010

Make Believe

There is something so amazing about watching a child pretend play. Although, it can be a time of revelation for parents (i.e. seeing yourself through their eyes). Talitha is enjoying pretend worlds more and more.

If she can get her sisters (Trevor refuses) to take her downstairs she will spend a long time playing "Barbies" or "food" with the mini kitchen and accessories.

Today she enjoyed playing with the Littlest Pet Shop lambs. One was pink, the other dark grey. She called them "pink baa baa and brown baa baa". She loved them for 40 minutes at least. She played with them in the little house, she put them to bed and got them up, took them for a walk, put them in a swing, a running wheel, and kissed them gently after making them a comfy bed out of her blanket. After that, she insisted on taking them with her for the nightly routine before bed.

When I was a teenager I had a church leader, that I loved, tell me that if you act "as if" you were the person you want to be, pretty soon that is what you become. So, if you want to be a scholar, concert pianist, or champion chess player (etc.), you act "as if" you already were. Pretty soon you find that you are practicing the very attributes and talents needed for achieving your goal. I guess that's sort of pretending until you get there.

You know, there is power in the words-- MAKE BELIEVE.

Thursday, July 15, 2010

Running

In trying to fit back into last-year's clothes I decided to take up running. I am not a runner and it has not gone all that peachy. In fact, most days that I run I do it "kicking and screaming." But I have found something to motivate me. A 5k.

It's an interesting thing how much more focused and motivated you can get when you have a goal in mind. In fact, the sweetest thing about this 5k is that it is for a good cause--a family is raising $ for financial assistance for children who attend Learning Dynamics Pre-school in Orem. Their young son attended there for one year before he died unexpectedly last summer.

So, I'm doubly motivated now and have talked several of my children into running it with me. (The rest of them will do the "family walk.")

I think one of the hardest things for me has been just putting that first foot on the treadmill. I don't know why it has been such a struggle. I'm wondering if I am the only one who feels this way and wonder if every other runner is yelling "Yahoo I get to do my running again today!"??

One of the things I've learned from running is to push through that first mile.

On one occasion I had finally (don't laugh) reached .5 mile and got a terrific side ache. I tried to breathe through it but this time it was just not letting up much. I kept going, thinking that I might need to stop. The problem with stopping is that I would probably not get back to finishing.

So, I pushed through. But, a strange thing happened when I finally hit 1 mile. Not only did I not have a side ache, I was energized! I had gone from not thinking I could do much more, to finishing that day's goal in record time. Go figure.

I feel like the last 7 months (almost 8) we've been running the race of our lives. Either that or we are in some intense training. Our goal has been to get Talitha better. We know that the only reason we have been able to get through it this far is with your faith and prayers and strength from the Lord.

It's an interesting thing how much more focused and motivated you become when you feel out of control and some tragedy reminds you how you need His help even more intensely.

Even on days we feel aches and pains from it all, we look at our little trooper and feel courage.

We cannot let her down, so we keep running. We cannot let Him down, so we keep running.

Wednesday, July 14, 2010

Weighing in on day 200

For this 200th blog update, I have some exciting news!

Talitha weighed in at the hospital today at 11.3 kilograms (24.9 pounds)!

Finally, for the first time in 200 days, she has exceeded her original weight of 11.2 kilograms (24.7 pounds) that was recorded when she first weighed in to begin this journey back in December of 2009.


As perhaps you can tell from the picture, Tali is liking--as opposed to tolerating--food again!

By way of additional update from today's hospital tests:

1. The echocardiogram went well. Tali's heart looks healthy and strong.

2. The blood tests showed good counts in everything but the white blood cells (WBC) and ANC. For some reason, her ANC dropped from 1,000 to 700 which means she is still very neutropenic. Because the rest of her counts are looking good, it means her new bone marrow is functioning. So they are reasoning that perhaps she has picked up a mild virus or two that the body is fighting. They indicated they are not overly concerned by the WBC and ANC drop because she is less than 50 days post-treatment. (If she were to still be having low counts like this 100 days post-treatment then that's another story.)

The first post-treatment tests are under the belt.

Now we "wait" for next week's tests.

Tuesday, July 13, 2010

Jesus is Coming

A dear friend of ours sent an email to us today with the subject line: Jesus is Coming.

The content of that email brought tremendous peace to my day. But it was the subject line that  really kept my attention.

I had just read the scriptural account of how a group of people heard that Jesus was coming the following day and they "did labor exceedingly all that night, that they might be on the morrow in the place where Jesus should show himself unto the multitude." (3 Ne 19:3)

Every prophet before Christ testified He would come and then Christ himself and every prophet since has promised and prophesied He will come again.

If Christ were coming tomorrow, what would be my reaction throughout today, tonight, and in the morning? I can hardly imagine the surprise I'd feel, then enthusiasm, then desire to see Him.

I'm sure I'd use every communication means at my disposal to spread the word including running up and down the street knocking on doors and yelling like I was Paul Revere or something.

The challenge for me is living each day in faith as if tomorrow really is the big day. It's so easy to get caught up in the pressing matters of this temporary stay on Earth and forget God's plan and purpose for us--His children.

If He was coming tomorrow, I don't think I'd let the stress of work get to me quite like it does. I'm pretty sure I wouldn't worry about a lot of the things I get worked up about.

I guess that's what touched me so much about this email today. It wasn't putting things in the future tense.

I think of how much heavenly support has been with Talitha and our whole family since the week of Christmas last year.  And that made me remember Christ's words to each of us, "In the world ye shall have tribulation: but be of good cheer; I have overcome the world." (John 16:33)

So, tell the family, neighbors, and friends. Shout it to the whole world.

Jesus is Coming! ...

...AND...

...He's not making us wait for His help but is already blessing, strengthening, and supporting us when we follow Him...right now!

Monday, July 12, 2010

Words of Christ

I've been reading the words of Christ the last few days and find myself hanging on His words a little more fervently than ever before.

I try to imagine what it would be like to have lived when Jesus was on the Earth. And I think about the promise that He will someday return again to the Earth.

When I hear or read stories of Jesus like the one below, I long to have His healing touch upon my family, especially Talitha.

"And it came to pass that when Jesus had thus spoken, he cast his eyes round about again on the multitude, and beheld they were in tears, and did look steadfastly upon him as if they would ask him to tarry a little longer with them.

"And he said unto them: Behold, my bowels are filled with compassion towards you.

"Have ye any that are sick among you? Bring them hither. Have ye any that are lame, or blind, or halt, or maimed, or leprous, or that are withered, or that are deaf, or that are afflicted in any manner? Bring them hither and I will heal them, for I have compassion upon you; my bowels are filled with mercy." 3 Nephi 17:5-7

I know that through faith, all things are possible. I'm grateful that blessings of healing and strength can be received in our day as well as in ancient times.
 
Belief in the gift of healing is included in one of the articles of faith from my church: "We believe in the gift of tongues, prophecy, revelation, visions, healing, interpretation of tongues, and so forth."
 
Faith really is the key to calling down the powers of heaven. Though sometimes I feel like my faith is weak, I try to never give up. The Lord keeps helping us through the rough and choppy waters and has always supported us through our trials.
 
I don't understand His ways and timing but I do trust Him.

Sunday, July 11, 2010

New dress

Talitha's grandmother's sister (Tia Laura) made her a dress a few months ago and Tali got to wear it today. Even though Tali can't yet go to church with so many people around, when she saw her sister Afton getting a dress on, she wanted one too.

Well, Tali loved it and insisted on wearing it all day.





So, I guess you could say she was all dressed up with nowhere to go. But we all enjoyed seeing her so happy with her fancy clothes. And she sure smiled whenever one of us said something about how nice she looked.

She even wore her dress when her sister took her on a long stroller ride around the neighborhood. She was so excited to see everything and when she saw some birds she enthusiastically motioned with her hands and called to them with the sweetest voice she could muster, "Come here birdies!"

She didn't get any takers among the wildlife but she sure has figured out how to use her sweet tactics to get her siblings to wait on her hand and foot.

Saturday, July 10, 2010

"Think Positive"

My oldest daughter has been performing in a community theater production of Willy Wonka. I finally had the chance to see it tonight.

In the play, Charlie is a boy whose parents and grandparents are very poor. Things seem to be getting worse and worse financially especially when Charlie's dad loses his job at the factory.

During one particular low point, Charlie sings a song called "Think Positive" that makes an excellent point: since you have nothing to lose, why not think positive and be happy instead of thinking the worse, being negative and down.

I like that.

I need reminders like that, especially on days when it feels like the world is closing in around me.

Getting your hopes up for things can make you vulnerable to feelings of disappointment or even failure if things don't turn out as expected or desired. But I'm not sure that expecting the worse--even as a defense mechanism--is a good alternative as that can lead to cynicism and defeatism.

I really, really like Gordan B. Hinkley's encouraging, hope-full words on this subject:

"It isn't as bad as you sometimes think it is. It all works out. Don't worry. I say that to myself every morning. It will all work out. If you do your best, it will all work out. Put your trust in God, and move forward with faith and confidence in the future. The Lord will not forsake us. He will not forsake us."

So whatever the trail or challenge--including the upcoming tests to see if Talitha's cancer is gone--I'm going with Charlie's suggestion.

"Think positive. You have nothing to lose. Think positive."

Friday, July 9, 2010

Next steps

We finally heard back from the Bone Marrow Transplant team regarding Talitha's next steps. As of right now, the schedule looks like this:

July 14 - 9am Echocardiogram in cardiology, then up to the Bone Marrow Transplant clinic for her regular appointment.

July 21 – 8am Hearing testing in Audiology, then clinic, then the first post-treatment spinal tap at Noon in RTU.

July 26 – 1pm is her first post-treatment MRI in Radiology

Please pray for Tali that her body will continue to respond well especially through all these tests.

The spinal tap on July 21 is when we'll know if the cancer cells have been eliminated from the spinal fluid. We're trying to be brave but we could use all the spare prayers you've got.

Thank you!

Thursday, July 8, 2010

Locks of Love

Today was a big hair day--and I don't mean the kind from the 80's.

Two of our daughters, Madeline and Afton, got their hair chopped. Twelve-year-old, Madeline, donated over 10 inches of her hair to Locks of Love--a non-profit organization that provides wigs for children in need. This is the second time she has done so. The first time was a few years ago when we never even suspected one of her siblings had the slightest possibility of getting cancer, and losing all her hair. (Come to think of it, Tali wasn't even born.)

Talitha will probably not need a wig. She is not self-conscious about being bald at all. In fact, today she "brushed her hair" and tried to put in a hair elastic. She settled on a red head band when she couldn't get anything else to work. What a hoot!!

Lately Tali likes to watch "Boundin'", a 4 minute musical-like cartoon by Pixar about a little lamb that is happy and confident until it gets sheared for the first time. (http://video.google.com/videoplay?docid=4261130809957959046) Left "in the buff" his friends make fun of him and he becomes mortified about his situation and stops his singing and dancing and making everyone happy. Soon a jack-a-lope comes by and gives him some advice. He tells him basically, that he needs to "rebound" and make up his mind to be happy, and not to worry about what others might think. The jack-a-lope convinces him to keep on singing and dancing no matter what he may look like.

I'm glad Talitha, despite being bald, continues to live life to the fullest.

I suppose life is full of a lot of "bounds and rebounds."

And bald to us has never been more beautiful.

Wednesday, July 7, 2010

Problem pile

It has been said that if we all threw our problems in a pile, and looked at each other's, we'd grab ours back.

Depending on the day, that statement is totally believable.

Since entering this new world with Talitha, I've had people tell me that their problems are nothing compared to mine.

Funny thing: in the last two days, I've spoken with or exchanged emails with three different people and could say the same thing to them. My problems are nothing compared to theirs.

Seems we each have a tendency to perceive others' problems to be more than we have ever or could ever endure or put up with.

For now, I've concluded that it's simply impossible to compare. There are too many variables to compute and too many apples masquerading as oranges.

There is only one legitimate comparison.

In the following verses of scripture, the resurrected Christ made reference to His unspeakable suffering and how if we will repent, we can escape the jaws of hell that would otherwise exact a terrible price for our sins:

"Therefore I command you to repent—repent, lest I smite you by the rod of my mouth, and by my wrath, and by my anger, and your sufferings be sore—how sore you know not, how exquisite you know not, yea, how hard to bear you know not.


"For behold, I, God, have suffered these things for all, that they might not suffer if they would repent;

"But if they would not repent they must suffer even as I;

"Which suffering caused myself, even God, the greatest of all, to tremble because of pain, and to bleed at every pore, and to suffer both body and spirit—and would that I might not drink the bitter cup, and shrink—

"Nevertheless, glory be to the Father, and I partook and finished my preparations unto the children of men." D&C 19:15-19

So whether the statement up front about throwing all our problems into one big pile is true or not, one thing is certain: Christ's problems included the entirety of the communal problem pile. There is nothing He has not endured. There is nothing He hasn't suffered.

Therefore, as long as we put our complete faith and trust in Him, He will make it possible for us to survive our problems whether newly acquired or recycled from the pile.

Tuesday, July 6, 2010

Home

We try to take Talitha out for a walk/stroller ride each day where she can get some fresh air and some healthy sunlight.

Tali really loves getting out of the house and likes to see the sites--especially if those sites involve birds or dogs.

But if the walks get too long by her measurement standards, she looks back, gets eye contact and then asks, "home?"

That's her cue to me to start heading back.

"Home" can take on both physical and spiritual meanings. When we are separated too long from familiar sources of nourishment to body and soul it inspires a longing for that familial association.

I believe we left a very real Heavenly Home to come to Earth and receive a body as part of God's plan for the eternal progression of His children. This separation from God that we call Earth life creates a yearning for spiritual fulfillment that can draw us closer to God if we will let it.

We feel closest to those sometimes inexpressible senses of Heaven's Home when we are serving others and engaging in virtuous behavior befitting our divine heritage.

Prayer provides a way for us to "call home" and reading the scriptures is a wonderful way to hear back from that Home.

I'm so grateful for my home on Earth and for the knowledge that "home" is not a temporary, passing concept.

And I'm grateful that Tali is drawn toward her home. With a little, consistent effort, I believe our homes here can be a bit of Heaven on Earth.

Monday, July 5, 2010

Important things

A friend sent me this funny picture and after a good laugh it made me think.
In life, it's really easy to get busy with important things and sometimes crowd out things that are more important or even irreplaceable.

We were given a box of fireworks last week and decided tonight was the night to light them.

We kept Tali up past her bedtimes so she could come outside with us and watch. To see the excitement in her eyes and little body was worth the missed sleep--and that's saying a lot.

I know I've missed the boat so many times ... but tonight, we got it right!

Sunday, July 4, 2010

Independence

Holiday or not, Talitha is catching on to the "independence" concept quite well.

She loves finding socks of all sorts and putting them on and off her feet. Today she rummaged around in a closet till she found some little pink boots. And what a find!

Of course, she had to take off her sandals and put those boots on. Never mind that it's July 4th. Those toasty warm, pink winter boots were the thing for her.

It wasn't enough to just put them on; she had to take them for a spin. She found a willing participant to help her with her jaunt about the house--her older sister, Elisa.


So off they went. Nice cool summer outfit with pink winter boots. An irresistible fashion combo, don't you think?


Happy Independence Day!

Saturday, July 3, 2010

God bless America!

A day of celebration!

So much to be grateful for and so much heritage to live up to. I couldn't help but wonder what our ancestors--who paid such a price for freedom--must think as they see the widespread peace we enjoy but also the threats to that peace.

I pray that God will continue to bless America and I know that He will if we will put our faith and trust in Him.

"Behold, this is a choice land, and whatsoever nation shall possess it shall be free from bondage, and from captivity, and from all other nations under heaven, if they will but serve the God of the land, who is Jesus Christ, who hath been manifested by the things which we have written." (Ether 2:12)

I took Talitha with me for a car ride this evening to drop off her brother Trevor at one of the many patriotic events going on throughout the city. Tali was in such great spirits and talked and sang the whole way home. I didn't want to say anything just in case that would make her shy. I just wish I could have recorded it.

Most of the talking and singing was in a language other than what I understand, but at one point she suddenly and very clearly sang "Twinkle, Twinkle Little Star"--almost the entire song. What a delight to hear her so happy!

That's how I feel about the Fourth of July holiday. There's a feeling a joy and unity that just feels great.

May our hearts turn to God more and more. And I pray that He will bless this great land and the many men and women who still serve our country to preserve our rights and to be a light of hope to all the world.

Friday, July 2, 2010

Getting what I want from God

In teaching the people how to pray more effectively, Jesus encouraged them to be real and sincere. He even reminded them that "...your Father knoweth what things ye have need of, before ye ask him." (Matthew 6:8)

Prayer is such an opportunity to reconcile our will to God's will because He knows what we need far more than we do. We are promised that when we ask in faith according to what God wants for us, we will receive what we ask for.

I wonder if we can even begin to appreciate that when what we ask for in prayer is contrary to God's will, if He were to literally answer our prayer in the way we wanted, it would be detrimental to our well being.

So when we don't get what we think we want and sometimes think He's not listening, we might want to consider that His not giving us what we want could really be His way of giving us something better.

I've mentioned before that Talitha usually prefers not to go to bed. She asks for "one more" book and "one more" drink of milk and "one more" song when what she really wants is to not go to bed; and her getting what she wants in that case would be disastrous to her fragile health and recovery.

So think about it. When I put her to bed when that's not what she wants and that's not what she's asking for, am I "ignoring" her request and being "unresponsive" or am I--from a higher vantage point of understanding--helping her get something better than what she think she wants.

I know for myself that God doesn't ignore His children. He is not ignoring us nor is He being unresponsive. Our asking "one more" time or "one more" way sometimes has us so wrapped up in trying to get our way that we can't even begin to see the bigger picture.

Thank goodness our Father in Heaven is figuratively willing to just scoop us up in His arms mid sentence and lay us carefully in our beds amidst our storm of protest, kiss us gently, and let us have what we need instead of what we think we want.

Thursday, July 1, 2010

Eyelashes

One little exciting tidbit to share: Tali's eyelashes are starting to grow back!

She's still mostly bald on top with no sign of new growth there; but some little tiny eyelashes are starting to peek through.

Talitha had the longest eyelashes I've ever seen on a baby girl. They didn't fall out all at once. In fact, she had one single eyelash right in the middle on one side for several weeks.

I wonder if they'll grow in as long as the first time...

It doesn't matter.

She's so beautiful to me, I'm smitten either way.