Bug and a hair brush

Talitha has had a great week up until about 5 hours ago. She picked up some bug and is throwing up about every half hour.

After she chucks she feels great and seems perfectly happy and content. Then she wants to eat and have more milk.

After about 4 repeating cycles of not-quite-getting-the-bucket-there-in-time, the food is on hold and we're trying just water. She doesn't have a fever so we don't have much to go on yet.

She's a little tired but doesn't look sick in these photos that I just took a few minutes ago. (I've been doing a lot better laying off the camera since saying goodbye to the daily blog updates. But I just had to snap a few when I saw her having such a good ol' time with the brush alternating between her hair, then daddy's hair, then mommy's.)

I'm praying that the sickness that popped up this afternoon with no apparent provocation will decide it has the wrong address and go away.

It's time

This blog began as a series of daily emails from my brother to family members.

To relieve the pressure of having to repeat vital information about Talitha's serious condition again and again, I was able to take few minutes each night as I drove from the hospital to my mother-in-law's home to verbally update my brother on the events from the day and he would compile the data and forward it on.

Those early emails became the first posts of this blog.

At the point where I could emotionally function again to some degree I began posting daily updates to this blog personally. (Many thanks to the kind family and extended family who helped me set up and learn to use a blog.)

These past 265 days have been filled with miracles, learning, heartache, joy, stress, hope, gratitude, and love.

Some nights the words came easily. Many nights were a struggle.

The healing I've witnessed and experienced is completely real and undeniable.

Physical healing, if not the most important, has been the most obvious.

While the daily journey will from this point be less public, Talitha's fulfillment of her mission and purpose has only just begun.

We expect the play-by-play details to now be less frequently reported. Weekly or "as-needed" reports probably make more sense given the less dramatic, less urgent nature of the day to day pieces.

Our faith in Jesus Christ has been our refuge from this very unexpected storm.

These recent trials have encouraged us most persuasively to seek and follow the Good Shepherd more intently.

I pray that faith in Christ may continue to increase to the extent that storms are and will continue to be a part of life. Jesus is the Master over the terrifying, stormy elements; His calming intervention both soothes and rescues.

There are no words to adequately express our gratitude for the countless prayers from friends, family, neighbors and even strangers. You have been His hands in lifting our burdens, sharing of your substance, providing relief in every way possible.

We love you.

We pray that the Lord will richly bless you and reward you abundantly for your many kindnesses and unselfish generosity towards Talitha and our whole family.

We will never be the same and thankfully so.

For me, the light blue wrist band that says "Pray for Talitha" has become symbolic of not just the Lord raising our daughter from peril but also His boundless mercy, power, and grace to raise all of us to be more than we have been and to do more than we have done before.

The wrist band reminds me to pray for those who are experiencing hardship and then seek for ways to help lift burdens within my circle of influence. I have learned this and many other important lessons by watching you and seeing the way you have prayed for and served and lifted us.

We've learned for ourselves that angels are real and most the time they visit wearing something other than white clothes and halos.

Thank you, thank you, thank you!

And may the honor and glory be forever to Him who gives us life and blessings beyond calculation.

Aunties and Cousins

One thing about some of the Polynesian cultures that I love is their ready acceptance to call you "family." In fact, many working at the Polynesian Culture Center were calling everyone "cousin" right from the start. It was a great way to break down stiffness surrounding a bunch of strangers thrown together in a tour group.

As we took Malorie to BYUH last week, we looked up some friends of people from home in hopes that if Malorie needed something they might be able to help her. This brought me some peace as I left my second born thousands of miles away from home. On one occasion, a woman whom we had just met enthusiastically said she would be more than happy to look out for Mal and said, "Just call us your aunties."

One thing we have found during this journey with Talitha is that we have a lot of family. We thank all of you for being our "aunties" as we've needed so much of your support.

Mahalo Cousins!!

Transition

A rather anti-climatic if not unnecessary exit interview with the bone marrow transplant team today as they "officially" handed Talitha back over to the oncology team to manage her maintenance program.

Thank you to all who have continued praying for Tali that her bone marrow may continue to heal and grow stronger and stronger toward the more abundant production of white blood cells.

Thank you also for praying that her sense of balance may return and that she will soon learn to walk again. She is showing great interest in walking in spite of her awkwardness. She took more steps tonight than she has in a long time as she kind of half teetered, half staggered her way from Madeline's bed to Afton's bed while saying goodnight to her sisters in their room.

We have so much to be grateful for!

Reporting on the most recent MRIs

Talitha's MRI results look good.

The spine and head are clear of any abnormal growths or concerns.

The ventricles still show more fluid than what would be considered normal but according to my neurologist brother the brain is very adaptive especially before five years old and the fluid in Tali's head seems to be circulating just fine and not causing any problems.

So, another encouraging test result to report along this journey of faith.

To me, each little miracle is noteworthy.

I thank the Lord for it.

This is His victory.

Good vs. Better(?)

Talitha and her daddy have been having a great time...

...and...

Talitha and her daddy are ready for Tali's mommy to come home.

I can't remember where Malorie got these glasses but ever since she brought them home, Tali has loved playing with them.

This is the first time she's let me take her picture with them on. She's so cute with them but usually by the time I run and get the camera, she's done playing with them and no amount of coaxing changes her mind.

Normally, the glasses aren't upside down on her face but I wasn't about to mess with them.

I'll never forget what the Nurse Practitioner told me clear back when Talitha was in the Pediatric Intensive Care Unit and I was fussing with her blankets or this or that to try to make her even more comfortable:

"Better is the enemy of good."

All too often I make things worse by meddling or trying too hard to make them a little bit better instead of just appreciating that they are already really good.

And good can be ok if you let it.

I'm a pretty girl

I appreciate it when everyone plays nicely together because they don't always.

Talitha had so much fun getting her sister Afton to laugh and laugh. I tried to get some of Tali's crazy antics on video but she stopped as soon as she saw me getting the camera ready.

So we had to settle for Five Little Monkeys. I love how she tried to keep going while taking a cucumber food break right in the middle.



When I was putting Tali's pajamas on her tonight, she looked at me as said, "I'm a pretty girl."

Yes, Tali, you are a pretty girl and not just because you hair is growing back.

Morning scripture reading

Talitha loves to do whatever her siblings do. So naturally, when we read scriptures together in the morning, Tali wants to be more and more a part of the action.

It wasn't enough this morning to share with one of her sisters. She needed to have her own scripture book.

I have to admit, Tali's cuteness can be distracting at times. She doesn't bother waiting for her turn to read but just starts talking away in some foreign tongue known only to herself and the angels.

Tonight, Tali helped me put her older sisters to bed and when she saw them kneeling by their beds to pray, she had to jump right down there by them. She knelt first by Afton for an appropriate moment before scooting herself over by Madeline where she again knelt by her bed and put her hands together in proper prayer fashion with her head bowed.

Unfortunately, Talitha also mimics other things she sees happen around the home. Not really the cute kind of things I'd care to take pictures of and post on a blog.

Hopefully, with enough scripture study and prayer we'll find a way to make it through this life with a few less avoidable bumps and bruises.

Numbers dropped

Talitha's lab results today showed an unexpected drop in the white blood cell count and ANC numbers. In fact, Tali's ANC a little over two weeks ago was more than two and a half times higher than today's numbers.

She's borderline neutropenic again.

They tried to reassure me at the hospital clinic by telling me that it can take a year or more for the blood counts to normalize but still, they can't account for the substantial drop at this point.

Because Tali no longer has a central line, they had to insert an IV needle in her wrist to gain access for the blood draws and to administer the anesthesia to sedate her for her MRI. Poor Tali was not happy about the needle. And to make matters worse, they had to do THREE needle inserts before they were able to get one that worked.

Tali was very clear with them through her hollers that she was not a happy camper. But by the time the IV team had packed up their things to leave, Talitha had calmed down and actually said "thank you" to them as they left.  (Just made me wanna cry.)

I love little children and their innate ability to forgive and forget.

The MRIs of Tali's head and spinal cord seemed to have gone well enough. We don't know the results yet but are hoping that nothing out of the ordinary shows up.

I have to admit I'm disappointed about the drop in the ANC and white blood cell count. I really thought we'd be having Talitha back at church with us this month or next.  Now they are advising us to not plan on it until mid to late November at the earliest.

Please pray for Talitha's bone marrow that it may be strengthened to be able to produce the abundance of white blood cells that her little body needs.

Thank you.

I'm hungry...really hungry

Grandma Wood has been staying with us since Audrey left with her sister to "take" Malorie to school.

I'll be taking Grandma back to Salt Lake in the morning when I take Talitha to the hospital for her next MRI.

So grateful for the help with everything. (Tali loved having her grandma here while her dad was at work and the older kids were at school.)

When Grandma went in to get Talitha after her nap, Tali looked up at her and said, "I'm hungry...really hungry." Well, grandmas are good at solving problems like that and soon Tali had consumed nearly an entire banana.

If there was any doubt before, there's none now: Talitha has her appetite back!

I'll come back

Another one of Talitha's older sisters left for college today. Malorie starts her freshman year at BYU-H next week.

It's hard to explain to a 2-year old that Malorie will be gone till the middle of December. Tali definitely knew something was going on with suitcases going out to the car and even told me a couple of times to "stop!" as I was carrying bags to the vehicle.

Another adjustment to make.

Life is full of them.

At one point this afternoon, Talitha just kept saying over and over, "I'll come back. I'll come back."

So many things that can mean.

Maybe it's simply what her sister told her before she drove off.

Maybe it's more.

Tali is (and daddy is) going to miss Malorie.

The Lord's Prayer

From time to time, the words of Jesus as He taught people to pray come to mind as I am praying.

Each line is a beautiful example and demonstration of faith. As trials of life come in varying degrees of heat and intensity, the pattern Jesus set for effective prayer has been and continues to be of great value in helping me learn to:

1. Acknowledge God in His station high above my own where He is able to see everything especially what I can't see.

"Our Father who art in heaven, hallowed be thy name."

2. Remember that God wants what's best for me. And if I could see what He sees, I'd want what He wants for me too. By aligning with His will, I'm opening myself up for the best of the best solution(s) to my challenges.

"Thy kingdom come. Thy will be done on earth as it is in heaven."

3. Trust in the provident hand of the Lord to send forth manna from His heavens. I must prepare all I can in obedience to His commands. But then I must not put my trust in the fruits of my earthly labors, the arm of my flesh. All my earthly supply may be taken from me in an instant. However, the shelves in the heavenly storehouse are never bare.

"Give us this day our daily bread."

3. Shift to a framework of gratitude. My debts to Christ are infinitely greater that what anyone else might owe me. Instead of focusing on what I don't have or all the supposed wrongs others may have committed against me, I see that I am lost without Him and will gladly forgive the "mote" or small-sized claim I have against others in exchange for Christ looking past the "beam" of my own eye.
 
"And forgive us our debts, as we forgive our debtors."

4. Put on the whole armor, ready for battle each day. The war between good and evil rages on. The way of safety is prepared if I will but pray for it and work for it.
 
"And lead us not into temptation, but deliver us from evil."

5. Keep my eye single to His glory. This will help me avoid the ever-present pitfalls of pride and judgment that would otherwise blind me and ensnare me.

"For thine is the kingdom, and the power, and the glory, forever. Amen."

God is real. He has blessed me by His grace beyond anything of personal merit. He continues to bless and lift Talitha and our whole family. His goodness is limitless and His capacity and power to rescue and save are endless.

Tongue in cheek

"God gives little children such sweet voices so you won't say 'no' to them."

That was the classic statement of the day made by Talitha's mother.

Seems I'm always being accused of being too much of a softy with Tali.

Now I know that it's all God's doing.

He's the one that gave Tali her sweet, little, can't-say-no-to voice.

And who am I to stand in the way of God's will?

:-)

A little bit of church

I took Talitha to church for about 10-15 minutes today. We just sat out in the foyer and listened to one song during Sacrament Meeting.

Little by little we'll need to get comfortable taking her to places with a lot of people again. Today was a little step toward that.

Except for the one week I took her to the services at the hospital, Tali hasn't been to church since December 20, 2009.

Before loading up in the stroller to walk to church, I had her lean up against the door to take her picture in her little dress.  She was so excited for our little adventure.

Still no further progress with the walking. She just doesn't seem to be able to find her balance without help and doesn't like the unstable sensation.

All in good time.

Retaining a remission

I've heard the word "remission" used to describe someone who is cancer free (e.g. their cancer is in remission).

In looking up the definition, I found that remission means: "the state of absence of disease activity in patients with a chronic illness, with the possibility of return of disease activity." 

That definition seems to fit what we've been told. As reported this last week, the spinal tap shows an "absence of [cancer] activity" in Talitha. However, secondary cancers are always a concern once you've battled the primary cancer into remission.

I guess that's why the doctors say the cancer is in remission and then they keep doing follow-up exams for years and years to monitor and catch it quick if the disease returns.

I vote for permanent remission.

In reading the scriptures, I've found that the remission word is used to describe forgiveness of sin.

Just like physical disease can weaken and even destroy the human body, spiritual disease can weaken and destroy our spiritual bodies.

In doing a quick search of the scriptures online, I found 46 verses that use the word remission as it relates to being healed or forgiven from the adverse effects of sin. In some of those verses, the word "retain" was used (e.g. retain a remission of your sins).

So it seems to me that remaining disease-free has application both when speaking of physical challenges like cancer and also spiritual challenges like sin.

There are specific things that we are currently doing and will continue to do throughout Talitha's life to support and preserve her physical state of remission.

The scriptures are very clear regarding the things we must do to receive a remission of sins and then to retain that remission throughout our lives.

As great as our desires are for physical well being, how much greater should be the desires for spiritual well being.

When Jesus was confronted with the criticism of the scribes at the time He forgave the sins of a young man stricken with the disease called palsy, He replied with this classic question, "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?" (Mark 2:9)

Then Jesus proceeded to heal the physical disease, having just a few moments earlier healed this same young man from the more consequential spiritual disease.

My hope and prayer is that our joy in seeing the Lord raise Talitha from her bed of affliction might be a timely reminder of the even greater, eternal joy to be found in Christ's power to raise us all from our spiritual beds of affliction.

Missing sisters

Talitha has been doing pretty good being at home with her mom while Afton and Madeline have been at school. Her sister Malorie hasn't started college yet so she's been around a lot to keep her company.

But today, Malorie drove to Cedar City with Afton and Madeline to spend the night with Elisa who's down at SUU.

Tali was so sad when they left. She's pretty tight with her sisters.

So, this evening, she got to spend some time with her brother, Trevor. They had a good time together while the parents slipped out for a few minutes to regroup and pretend like it was date night.

Everyone seemed to survive just fine.

Tali looks healthy

As Audrey takes Talitha on walks in the stroller, there have been several neighbors and friends who have commented that Tali looks good and healthy. We appreciate the encouragement as we begin looking at what "regular" life with Talitha might be like.

I hope it won't be too many more weeks before Talitha can be at church with us and in other more crowed public places.

She is looking really good.

Her hair has almost covered the scars on the back of her head and her color looks very good. Her eyes aren't as droopy now and other than a runny nose, she doesn't look like she's sick anymore.

She seems to have good energy. Other than her left leg that still has some stiffness that makes it hard for her to balance and walk, she appears to be physically normal.

We'll just keep taking it one day at a time.

Patience...

Rebirth and the 100 day mark

Our friend sent a very enthusiastic happy-birthday email to us for Talitha. In the message she said, "It is a rebirth and such a miracle. I am grateful to God for his mercy."

I love that.

Today marks the important 100-day point since Tali's third and final BMT birthday.

On May 24th I wrote:
"We had quite a celebration at the hospital this morning as doctors, nurses, techs, administrators, and various other hospital staff packed into Talitha's room to sing "Happy Bone-Marrow-Transplant Birthday to You". The singing was awful as advertised and exhilarating. Her last transplant!"

It seems like yesterday and forever ago.

The high-dose chemo had completely eliminated her bone marrow over the weekend and the infusion of her "transplanted" cells marked the beginning of a new life as the new bone marrow engrafted over the ensuing 11 days.

Tali will have another MRI on the 10th of September. Then we'll meet with the BMT doctors on the 15th for a final debrief before being passed back to Oncology for the official start of the long-term monitoring phase of this journey.

In light our experiences with Talitha, I've pondered the scriptures that talk about rebirth or being born again.

The Bible describes a brief, but important meeting between the Savior and Nicodemus:

"Jesus answered and said unto him, Verily, verily, I say unto thee, Except a man be born again, he cannot see the kingdom of God.

"Nicodemus saith unto him, How can a man be born when he is old? can he enter the second time into his mother’s womb, and be born?

"Jesus answered, Verily, verily, I say unto thee, Except a man be born of water and of the Spirit, he cannot enter into the kingdom of God.

"That which is born of the flesh is flesh; and that which is born of the Spirit is spirit.

"Marvel not that I said unto thee, Ye must be born again." (John 3:3-7)

There's something very sacred about following Christ and taking upon us His name and becoming His children.

"And now, because of the covenant which ye have made ye shall be called the children of Christ, his sons, and his daughters; for behold, this day he hath spiritually begotten you; for ye say that your hearts are changed through faith on his name; therefore, ye are born of him and have become his sons and his daughters.

"And under this head ye are made free, and there is no other head whereby ye can be made free. There is no other name given whereby salvation cometh; therefore, I would that ye should take upon you the name of Christ, all you that have entered into the covenant with God that ye should be obedient unto the end of your lives.

"And it shall come to pass that whosoever doeth this shall be found at the right hand of God, for he shall know the name by which he is called; for he shall be called by the name of Christ." (Mosiah 5:7-9)

I'm grateful that Talitha has been granted a fresh start, a new birth, a new lease on life.

One day just a few short years from now, Tali will have a chance for yet another rebirth. Just like Nicodemus, she will get to choose to enter the waters of baptism and formally take upon herself the name of Christ. At that sacred time the symbolism of birth will be evident as so beautifully stated in Moses 6:59:

"...inasmuch as ye were born into the world by water, and blood, and the spirit, which I have made, and so became of dust a living soul, even so ye must be born again into the kingdom of heaven, of water, and of the Spirit, and be cleansed by blood, even the blood of mine Only Begotten; that ye might be sanctified from all sin, and enjoy the words of eternal life in this world, and eternal life in the world to come, even immortal glory."

I'm grateful for the words of eternal life that sustain us during this mortal sojourn. I'm grateful for the hope I have that has been made possible by Christ. I've come to know for myself that being born of Him is worth it even when the trials of faith at times seem heavy to bear.

The good news and foundation of His gospel can be simply stated: those that are born of Him are also saved by Him.