Comfort zones

Talitha didn't need two naps today. She went for a new record and napped for three and a half hours. (I'm trying really hard to not be jealous.)

She needed platelets again today. And she'll probably need a transfusion of red blood cells tomorrow.

The happy news of the day is that her newly forming bone marrow is starting to produce white blood cells. It was just a very slight uptick in the counts. Hopefully tomorrow's blood tests will show it wasn't a fluke.

The aches and pains of the rapid growth within her bones started becoming more obvious today as Tali would start crying without warning from time to time. She was also quite a bit more irritable today but that may be partly due to her getting ready to be a two year old in a few months.

One of the techs came in the room this afternoon to check Tali's vitals. First the blood pressure machine showed unacceptably high numbers. So, the tech tried again. Then the numbers were unacceptably low. (I suggested to the tech that she should just take the average between the two as that would be a perfect blood pressure reading. She just ignored me for some reason.)

Since the sophisticated machine didn't seem to be working, the tech brought in one of the old manual blood pressure reading devices on wheels. When Tali saw that “new” machine, she immediately asked me to pick her up from the floor mat and she became very distressed.

When I think about it, Talitha has been battling cancer and living in hospital rooms for over one fourth of her life. During this time, she has been adjusting to certain routines and procedures and has become comfortable with the uncomfortable--to the extent that she recognizes it.

Gives me a whole new understanding of what comfort zones are all about. It has very little to do with what's in the comfort zone and everything to do with whether or not you've become accustomed (or used) to it.

Quiet and anti-climatic...please

We've been warned throughout this cancer-fighting journey that it's best not to get your hopes up too high on the "good" days and also not to let yourself get overly depressed on the "bad" days.

The idea is to be as steady as possible as that is a pace best suited for long-distance or endurance running.

At least the advice makes sense on paper...

I'm finding that as we get closer and closer to what we hope is at least a resting line--if not a finish line--it's a bit like a child counting down the days to Christmas. Great way to get time to stand still.

It may seem a bit odd to say it, but I really am hoping for a quiet, anti-climatic "finish" this week.

In spite of low or zero blood counts today, Talitha was in a more spirited mood than usual for this phase of the cycle. She did need two naps to make it through but, other than some bouts with nausea and throwing up, she didn't seem to be down or complaining about aches and pains.

While in the "crib-room" today, she unexpectedly asked for the bag of colored leis. Then she proceeded to stack them on her neck one after another.

I think it's her way of celebrating what we hope will be her last Sunday here at the hospital.

Thank you for your prayers. Tali has strength beyond what she should for this final, knock-you-down-then-build-you-back-up chemo/bone marrow transplant round.

Smile and wave

Talitha had a really good day.

She tried hard to throw up right when I arrived this morning but somehow finessed her way past the gag reflex...and stayed past it all day.

She did need platelets but managed to sleep through the entire transfusion laying on her floor mat.

With her blood counts so low including a zero ANC, the much needed nap lasted two and a half hours.

Fortunately, no one was taking my picture while I snuck in my own much needed hour-long nap during this same stretch.

The nurses and doctors continue to give us very positive feedback on Talitha's progress. They are pleased she's not getting the very common mouth sores and is able to still be drinking nearly a quart of rice milk per day.

She isn't eating much but is still eating some which is again a pleasant surprise to the hospital staff.

During his morning visit, Dr. Boyer told Talitha she should write a book about how to sail through bone marrow transplant. She just gave him her best cold stare and then waved a polite good-bye in the hopes he'd get the hint.

Is this her last Saturday of hospital residency?

I know Talitha's dad is sure hoping so!

Comfort

Talitha's counts are dropping as expected. If they continue following the pattern of the other transplants, I expect her ANC will be near zero tomorrow.

We hope once again she will be protected from bacterial and viral infections while her immune system is off-line. When we come to these especially vulnerable spots, the Lord has been kind in sending comfort and support.

Tonight, the comfort is coming from two places:

1.  The fourth verse of the 23rd Psalm: 

Yea, though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me.

2. The words of the stirring hymn, Be Still My Soul:

Be still, my soul: The Lord is on thy side;
With patience bear thy cross of grief or pain.
Leave to thy God to order and provide;
In ev'ry change he faithful will remain.
Be still, my soul: Thy best, thy heav'nly Friend
Thru thorny ways leads to a joyful end.

Be still, my soul: Thy God doth undertake
To guide the future as he has the past.
Thy hope, thy confidence let nothing shake;
All now mysterious shall be bright at last.
Be still, my soul: The waves and winds still know
His voice who ruled them while he dwelt below.

Be still, my soul: The hour is hast'ning on
When we shall be forever with the Lord,
When disappointment, grief, and fear are gone,
Sorrow forgot, love's purest joys restored.
Be still, my soul: When change and tears are past,
All safe and blessed we shall meet at last.

Grateful for friends

Yesterday, I reported on Talitha's "new" baby.

Today, I'm happy to report that her "old" baby has not been abandoned. As Audrey watched Talitha play with both babies, she overheard Tali say, "hi, friends."

This scene was repeated several times and Talitha would hold the two babies close together, look at Audrey, and say, "friends!"

Speaking of friends, our second oldest daughter graduated from Provo High School this evening. My brother stayed at the hospital with Talitha so that both Audrey and I could be there at the graduation. After the event, our daughter found lots of friends to hug and take pictures with.

So interesting seeing our youngest daughter beginning to learn the concept of friends at the same time that her older sister is starting to say farewell to friends she's been making since she was a little girl.

Feeling a kind of heart-tug watching my children at their different stages of life, I want to gratefully acknowledge my friends. I'm grateful for each of you in my family, in my neighborhood, at church, at work, and at the hospital. I'm grateful for my old friends and grateful for my new friends.

Thank you for touching my life and making me want to be a better person.

You are a blessing and a treasure.

Thank you!

New favorite baby

On each BMT birthday, the bone marrow transplant coordinator brings gifts to the patient for the celebration. Usually, these gifts consist of a blanket--you can never have too many according to Talitha--a toy of some kind, and a t-shirt.

The favorite gift by far from this last BMT birthday is her new favorite baby doll.

She likes to give her baby baths in a little blue hospital basin. She's become quite proficient at bathing techniques thanks to her own high concentration of baths while clearing the Thiotepa toxins from the skin.



I wish you could see her hug and rock her little baby. She squeezes so hard it leaves the poor baby breathless.


I must confess that not all of Tali's "smiling" pictures are genuine. Sometimes, I simply ask her to show me her teeth. Works pretty well as long as she's not feeling too yucky at the time.

She's doing well for the moment as her counts have not yet dropped to zero from the high-dose chemo.

As the stem cells start growing new bone marrow, the aches and pains tend to become an issue, especially in little children with so much bone marrow space relative to the size of the bones.

Thank you for praying for Talitha in every way. She's continuing to respond well and had a much better go of it today nausea-wise.

A different kind of central line

The central line has been...well...central to the treatments Talitha has been receiving at the hospital because it's the portal through which medicines, IV fluids, transfusions, chemotherapies, antibiotics, and stem cells flow. It is also the portal through which blood samples are drawn; so the central line is necessarily bi-directional.

In order for this central line to function properly, it must be kept open or free from coagulating blood, and it must be kept clean from infection both on the outside interface where it enters the body and also on the inside.

Maintenance of the central line requires daily effort and diligence. For instance, if you forget to flush the central line with saline and heparin, the portals will close off as blood begins to enter and coagulate to form new flesh.

Under most circumstances, except for when you have to constantly clean the skin from Thiotepa excretions, a large, sterile bandage is placed over the central line's entry point into the body and this is effective in keeping the infections out for the better part of a week before a new sterile dressing is required to maintain cleanliness.

A good, functioning central line makes all aspects of the treatment run more smoothly. When the central line breaks down or isn’t functioning at its best, it can really have some negative consequences as we found out during the induction rounds of chemo.

I’ve lost count of the number of times during the last months I’ve thought how much prayer is like a spiritual central line. When prayer is functioning properly, the Lord is able to access portals to our soul through which He is able to draw out our heartfelt desires and fill us with peace, happiness, joy, love, hope, and faith.

When we keep ourselves clean both on the outside and on the inside, prayer seems to work better. But it takes daily effort and diligence to maintain a good bi-directional flow. Daily scripture study is a wonderful flush that clears through the fleshy pursuits of the world that would otherwise encroach upon us and eventually seal us off from vital heavenly flows.

Going to church each week is a great way to cleanse more deeply, to clear away stubborn build-up of sin and weakness. It’s important to prepare for the new week by removing the old and starting fresh with a brightness of hope in Christ and a renewed commitment to always remember Him and keep His commandments. That way, we can receive great protection and strength through the promise that we may always have His spirit to be with us…which is, after all, the optimal environment for a highly functional central line of prayer.

When the central line of prayer is operating effectively, it makes all aspects of our life run more smoothly. (The opposite is also true. When this central line breaks down, it can bring on some really negative consequences like fear, anger, bitterness, and despair.)


I’m so grateful that Talitha’s central line is functioning so well during these bone marrow transplant cycles. Little by little, we’ve learned how to take better care of it. And the diligence and effort have paid off.

Interestingly, I’ve learned a lot about the central line of prayer during this process as if the learning curves of each have been on parallel paths. Little by little, my knowledge and understanding have improved and the central line of prayer has become more effective as a life-saving means through which I’m able to daily pour out my thoughts, feelings, heartaches, and desires and receive comfort, strength, peace, and understanding.

BMT Birthday #3!

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!

Audrey decorated the room with a Hawaiian look and feel to it and everyone wore festive, colored leis for the occasion.

The actual insertion of Tali's stem cells via the central line was again very hard on her. As soon as the DMSO mixture that's with the stem cells entered her body, Talitha got extreme nausea. After losing everything in her stomach, Talitha dry heaved bile on and off for the next two hours.

Not fun.

Thankfully, that part is over.

No more bone marrow transplants and no more baths to wash off Thiotepia (the chemo drug that excretes through the skin for 48 hours).

This evening was more celebration time as Talitha's mom brought all her siblings to the hospital to spend a few minutes with her.

She enjoyed eating nachos with her sisters and showing off her new baby doll that the hospital staff gave her for her BMT birthday.



She enjoyed wearing her brother's cool baseball cap.


And most of all, she enjoyed feeling like a normal member of a normal family doing normal things, if only for a few minutes.

"Lord, I believe; help thou mine unbelief."

Though I probably have said it before, it's worth repeating: the short church meeting in the 3rd floor auditorium her at the PCMC each Sunday is such a blessing.

The medicine they give Talitha prior to a blood transfusion makes her very sleepy. So, while she was sleeping through her two-hour blood transfusion, I slipped out to go to church for a half hour.

So soothing. So strengthening.

Renewing in every way.

A teenage boy and girl played a heavenly violin duet. (Could've listened to that for the full half hour.)

The speaker shared his favorite stories of Jesus. He spoke of what it means to be rescued by Christ and that after we've been rescued by Him--usually rescued many times by Him--we feel a desire to help in the rescue of others.

One of the best ways we can help in the rescue is to first allow Christ to rescue us. I've learned the hard way in life that this rescue really has to happen on a very personal level. I don't know why I fought it for most my life other than that--I'm ashamed to say--I thought it was everyone else that needed rescuing and not me.

I've been wrong about a lot of things in life; but nowhere so much so as with my lack of understanding of my personal need to be rescued.

There's a really clever saying my dad used to tell me to drive home an important point about how much money we all make. I'll take the liberty of changing that saying and applying it to our universal need for Christ:

"We've all done exactly the same amount to qualify for eternal life. Exactly not enough."

Is faith important?

Essential.

Do we need to repent?

Absolutely.

Is baptism and receiving the gift of the Holy Ghost required?

Yes, of course.

The good news and essence of the Gospel of Christ is that if we do those things, then Christ has the power to save us.

But make no mistake about it. It is Christ that is doing the saving. And because He is the one doing the saving from death and hell, He gets to set the terms.

It says in the scriptures:

"Reconcile yourselves to the will of God, and not to the will of the devil and the flesh; and remember, after ye are reconciled unto God, that it is only in and through the grace of God that ye are saved." (2 Nephi 10:24)

We often hear quoted the scripture that says "it is by grace that we are saved, after all we can do." (2 Nephi 25:23) Unfortunately, I thought the all-we-can-do part was what did most the saving. Now I understand that the all-I-can-do part is only about getting reconciled to God through faith, repentence, and baptism. He then does 100% of the saving.

Well I could go on and on (as my wife well knows and patiently endures).

Let it suffice to say that I am gratefully being rescued. Like the father in the bible who came seeking Christ to heal his son, I too am seeking Christ to heal my daughter. And to heal me.

The words of Christ and the father's response then seem as real and relevent to me today as they were 2,000 years ago:

"Jesus said unto him, If thou canst believe, all things are possible to him that believeth. And straightway the father of the child cried out, and said with tears, Lord, I believe; help thou mine unbelief." Mark 9:23-24

The first of the lasts

I didn't expect to feel such emotion--elation really--as the electronic IV dispenser ticked down the final hour of chemotherapy.

No more chemotherapy!

YAY!!!

Perhaps these next two weeks will be a series of farewells to a list of challenges I hope Tali will be experiencing for the last time.

On a day of grateful goodbyes to chemo, I enjoyed spending time with Talitha as she moved comfortably from room to room in the room. (She sure is developing an imagination!)

During one of her visits to the "crib room", she asked for the stethoscope.

Each morning when the doctors make their rounds, it's not enough that one of them perform the stethoscope examination on behalf of the entire group. Oh no; they each feel the mandatory urge to take a listen.

Then of course throughout the day, "vitals" must be taken constantly to ensure that Talitha isn't faking being alive.



I hesitate to guess how many times since December 22, 2009 a doctor, specialist, resident, nurse-practitioner, charge nurse, regular nurse, or technician have popped that little device in their ears and advanced on poor, unsuspecting Talitha.



Well, as you can see, she won't be outdone now.

Hospital staff beware: Talitha just figured out how to don a stethoscope and may just want to go after your vitals for a change!

...again!

Talitha checked into her "hotel" room this morning after waiting a bit for the room to get cleaned and situated. (They had a bed in the room instead of a crib and the floor still had remnants from the previous "guests".)

The chemo injections started at 12:30pm--a bit earlier than on day one of the previous two rounds.

Her room this time is right between her first two rooms in the b-wing of the ICS unit. Looking out her window, you can see down to the north entrance of the PCMC and over to the parking garage. The hospital is near the "U" on the mountain (University of Utah) that you can also see from Tali's room. 


Tali's first clean-the-chemo-off-the-skin bath went well other than the delay in getting the tub room across the hall clean. After you've spent a few months at the PCMC you get to really appreciate the staff that are able to stay on top of everything that has to happen according to the crazy chemo and bone marrow transplant schedule.


We are grateful for the nurses, techs, and other staff with their unique personalities and idiosyncrasies. They really do try to put "the child first and always" which is the theme of the whole children's hospital.

Other than an ornery spell early this evening, Tali is off to a good start on this round. With plenty of books, toys, and stuffed-animal friends to play with in the multiple rooms within the room...let the adventure begin...

...again!

Father's love

I think the emotions are getting closer to the surface again as we are about to begin what we hope is Talitha's final chemotherapy and bone marrow transplant cycle.

We gathered for a special family prayer before saying goodnight to each of the children. I feel at peace and a little anxious.

Audrey will take Talitha to the PCMC for check-in around 9am. If this round goes like the last two, the high dose chemo--carboplatin and thiotepa--will begin flowing through the central line around 2pm. The first of the many baths to keep the skin from burning will happen in the evening.

The emotions are an interesting mix of about 2 parts melancholy/somber to 1 part anticipation at the prospect of seeing the light at the end of the tunnel.

Is the cancer still in there?

Will it be totally gone when this cycle concludes and they do another lumbar puncture/spinal tap?

I don't know the answers.

But God knows.

This is the part where I choose to accept His will.

Although I believe in eternal life and eternal families, Talitha does not belong to me. She is His.

I believe I have as much love for Talitha as my soul is capable of. That love is so strong that it overwhelms me at times.

So, when I consider that my Father in Heaven has an even greater love for Tali than I do, it has a relaxing, soothing effect on me.

Praise Him for His infinite love and goodness.

One more round...

...then please let her come home and be with us for good.

Can ye feel so now?

I was wrong about the platelets. Talitha's blood tests today showed high enough that she didn't need a transfusion after all. And it looks like she's on track to start up her next bone marrow transplant round on Friday.

(I've tried not to think about her next round. But now that we have to start making plans and figuring schedules...makes me tired all over again.)

Enduring to the end is such an integral part of the Good News of Christ. It's what keeps us exercising faith and changing our ways for the better.

The principle of "enduring to the end" teaches us that faith and repentance require effort and regular renewal. Otherwise, we forget what we once felt and grow blind to eternal truths that bring peace, happiness, and joy in this life AND in the world to come.

The scriptures have a wonderful spiritual checklist that can walk us through the basic essentials of drawing closer to God and the life He knows is possible if we will just follow Him. A change of heart in the past doesn't do much good in the present if it has grown cold or reverted back to its former state.

"And now behold, I say unto you...if ye have experienced a change of heart, and if ye have felt to sing the song of redeeming love, I would ask, can ye feel so now?" (Alma 5:26)

At different times and seasons of life and during various types of trials and challenges, spiritual strength and desires may ebb and flow to some degree. This is where effort and renewal are required. Otherwise, faith becomes a passing phase rather than a sustaining influence.

If during the low times we can persist and cling to the word of God then maybe the next low spot won't be quite as spooky even if at first it appears more ominous.

Said Ralph Waldo Emerson, "That which we persist in doing becomes easier, not that the task itself has become easier, but that our ability to perform it has improved."
...
Have I made it too obvious that I'm giving myself a pep talk?

There have been times in the past and more recently when giving up seemed like the easier thing to do. I guess I've learned for myself that it really is worth holding on even if for just a little longer.

The plaque on the kitchen wall reminds me: "I can do all things through Christ which strengtheneth me." (Philippians 4:13)

(It also helps to have a brave little baby daughter!)

Big bodies, little bodies

Talitha enjoyed her bath time tonight. I think the warm water relaxes her and helps with some of the aches she feels as the new bone marrow fills in more and more.

As mentioned yesterday, we've been on the lookout for signs of low platelets. Little bloodspots started appearing on her skin in several places today so I'm sure she's very low on her platelet counts right now.

I'm sure they will give her platelets tomorrow when she goes in to the hospital for her kidney tests.

We hope and pray her organs and ears will continue to hold up under the stress.

Heart, liver, kidneys, ears...I pray for each one by name and am grateful beyond words for God's most miraculous creation--the human body.

I think I took my body for granted while in my younger years. When you hit 40, you learn real fast what areas in the body may have been neglected.

I don't take my body for granted any more. And I don't take little bodies for granted now either.

The sure foundation

We thought the home-health nurse would be coming today to draw blood to see what Talitha's counts are. We called our assigned coordinator at the bone marrow clinic and were told they will wait to do blood draws until Tali comes in on Wednesday for her kidney tests.

That surprised me because I thought she'd need more platelets by now. Guess we'll just have to watch to see if any of the signs of low platelets pop up anywhere.

You'd think we'd be pros at this by now. In reality, nothing could be further from the truth. It's such a case of the more you find out, the more you comprehend that you know less than you imagined.

Though it feels our medical knowledge and understanding is declining, there's something that's been growing: our ability to see the Lord's consistent hand. The more I see and recognize the Lord's hand, the more I trust Him.

There have been a few times that people have let me down but the Lord never has.

"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'm grateful for the sure foundation of Christ that doesn't move, sway, bulge, or break no matter what. In a world of so few real guarantees, I'm grateful I have Him.

Enjoy them while they're young

It’s been a few years now but as a young father I remember the older and wiser parents around us frequently saying nice things about our babies and then adding with a sort of wistfulness, “Enjoy them while they’re young.”

Now I confess that while my smile and thanks for the compliments were sincere, I struggled with an “obvious” question—what part of them being young was I supposed to enjoy. Was it the poopy diapers, the interrupted sleep, the crying, the stress of taking care of them, the trying to get them to sleep—my list was pretty long and I didn’t get it.

Life was a series of chores. Go to school, get a degree, get a job, work hard and someday I would “arrive”. What that really meant I didn’t know because there was no definition to it. But surely, it would be a place of ample time, plenty of money, no worries, and lot’s of family vacations.

Well, here I am on May 16th, celebrating my oldest daughter’s 19th birthday, my second oldest daughter’s graduation from high school seminary, and grateful my wife of 20 years hasn’t given up on me.

Of course all those older and wiser parents were right. And now I understand that it all happened too fast for them too and they were just hoping I wouldn’t make the same mistake they made which is to let real life slip through your fingers by not realizing that “life is what happens to you while you're busy making other plans.”

Talitha was a gift from heaven to our family.

Our youngest before her was already nearly 8 years old when Tali arrived. In many ways, it was a second chance to have a little one around again now that I’d learned the hard way like all parents seem to that they really do grow up way too fast.

Now Talitha hasn’t been any easier of a baby than our other five children were. (And that was before the cancer.) Tali didn’t sleep through the night till she was a year old, which by itself wouldn’t have been so hard except that now we had a bunch of teenagers who didn’t like to go to bed till late (or early depending on how you look at it). So with Tali getting up early and the other kids going to bed late, this meant the candle was being burned on both ends.

But even though life was more challenging than ever, it was different because I wasn’t living each day as a big chore list for the future like I tended to do with my other children.

As we fight to save Tali, I try to remember that this phase of life’s journey is an essential part of life’s journey. It’s not just some unfortunate inconvenience to be rushed past in anticipation of some other undefined nirvana of the future. It is precisely the trials that build the contrast that inevitably define joy’s breadth and depth.

Yes, the days in the hospital are long. But sometimes I remember to soak it in and enjoy the moment and cherish life and my relationship with this beautiful little girl and all of my children. And when I do remember, the bitter becomes a little more sweet and patience is more my friend and ally than stumbling block.

Our family is truly grateful to have Talitha at home for a few days. We’re trying to think less of how long she’ll be at home this time and more about what a gift it is that she’s home at all.

We’re not just enjoying her while she’s at home or at the hospital.

We’re enjoying her while she’s young!

Tape

After being stuck in that little hospital room, Talitha sure took advantage of her new roaming privileges today.

She played on the trampoline with her sisters. She picked some flowers with her mom. She went on a stroller ride with her dad. And she played ball with her brother.

What a gorgeous day!

This evening, Talitha was sitting on my lap as I was in front of Elisa's laptop computer. She kind of took over and began pushing buttons on the key board. Suddenly, everything on the screen was upside down. (huh?!)

I was certainly surprised and didn't know how to fix it. I called to Elisa and Malorie and they came in to take a look.

After a few moments, Talitha began to cry. I couldn't understand what was wrong until it hit me that she was sad that the computer was broken and that all of us were concerned.

She calmed down and said what sounded like "tape". So I asked, "do you want some tape?" She said "kay" so I knew I'd guessed right. Malorie brought her a piece of tape.

Tali was very pleased and proceeded to put the piece of tape on the computer. Then we knew why she wanted tape. Whenever one of her books rips, she asks for tape so she can fix it so it won't be broken anymore.

We asked her if that's what she was doing--fixing the computer. She confirmed that fact with an enthusiastic "yeah".

So there you have it.

You can fix anything with tape.

We're so grateful to be home. And glad we have plenty of tape on hand.

Home again!

Tali's ANC shot up from yesterday making it an easy call for the doctors to release her. We're very grateful the engraftment happened again so quickly. The new bone marrow is quickly getting going!

Everyone is tired but happy.

Talitha was so excited to see her sisters and brother again. Non-stop playing interrupted only by a necessary nap and then the need to go to bed tonight.

So good to have her in her own bed.

Thank you everyone for your prayers and faith and service.

Tali will be home with us until next Friday. Then she'll be admitted to the hospital for the FINAL round of bone marrow transplant!

Worth smiling about

The counts are climbing!

White blood cells are above 1,200 and ANC is up to 400.

(Thank you for all the positive thoughts toward her counts increasing.)

Looking forward to her being home again for a few days. If all continues to go as expected, she will be released tomorrow. (Yay!)

----------
I remember when we first started going to meet with the PCMC oncologists in their clinic on the 4th floor back in January. It was hard for me to see the various young cancer patients of all different ages, young and old. I didn't want to stare but you couldn't help but see that many had lost all their hair, looked very pale, or just had random strands of hair left like Talitha does now.



But as I've been one of the travelers on this journey with Talitha, I've come to understand that the outward, physical shell that is under attack first from the cancer and then from the chemotherapy is not a true representation of the eternal soul. We love and hug that outward shell just the same but it's the person inside that's the real thing full of unspeakable radiance and light.



Then after this life, the temporal body is resurrected to it's perfect form to join its already perfectly-formed spirit, never to be separated again, never to endure mortality again.



And maybe, just maybe there will be lots of over-sized pink blankets to keep the head warm while the hair is coming back in. Now that's a thought worth smiling about!

Go cells go!

Talitha is showing a good increase in white blood cells so we hope to get an ANC reading tomorrow. Once Tali's ANC is 500 or more, engraftment has occurred and her new bone marrow is considered active and functioning.

Audrey reported that Talitha is able to finish the last word from almost any sentence on any page of any of the books we took to the hospital. (A lot of book reading time every day.) We are sure grateful that her brain is functioning and that normal development has been possible.

Talitha is also showing signs of wanting to learn to walk again and had Audrey hold her arms to do a little walk around the room in between bites of dinner.

The nausea comes and goes. Yesterday was challenging that way again. Today seemed to be better.

We're cheering on her counts so that she'll be able to come home for a week again before the third transplant round.

Please think happy-white-blood-cell-and-ANC-increasing thoughts!

Warm blankets

Three of my teenagers went on a conditioning hike with youth from our church in preparation for a big, multi-day trek they will be taking this summer. I guess Madeline at 12 years old isn't technically a teenager yet but she reported to me that it was raining again. (Three practice hikes so far; rain or snow each time.)

As I kissed her goodnight she was snuggled up in her warm blanket and told me how nice it was to be able to take a hot shower after being wet and cold. Most people I know, don't like being cold.  (My brother Evan may be one notable exception.)

Rain takes on various, unpredictable forms in life. Sometimes you get a little wet; sometimes you get soaked.

Fortunately, the rain doesn't last forever and with a little luck, there's a hot shower and a warm blanket waiting...just around the corner.

Speaking of warm blankets, the hospital has a cool blanket warming device. During the 3-baths-a-day segment of this cycle, a kind nurse thought to bring a warmed blanket to Talitha after one of her baths. She loved it so much that she now asks for one of these heated blankets after each bath by saying, "warm?"

During these warm-blanket moments, she will often ask for her baby and tuck it in with her to make sure her doll is warm too.


Sometimes the warm bath followed by a warmed blanket is just too cozy and she sneaks a quick snooze when no one is looking.


I'm grateful for warm blankets.

Driving home from work yesterday I was just plum tuckered out and feeling a bit down. I started praying one of those prayers you say to just check in with the Lord for a quick sanity check...and BAM...warm blanket!

I felt better the whole evening. Amazing how far one warm blanket can take you.
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Talitha's white blood cell count edged up ever so slightly today.

Hoping for another fast engraftment!

Volunteers

One of the neat things to see at the PCMC is the volunteers. Hardly a day goes by that you don't see volunteers in their red shirts around the hospital.

Perhaps the most noticeable group of volunteers is the therapy dog owners. They come at random times with their specially trained animals to brighten the day of patients and their families.

Talitha loves to see and pet these dogs so we were quite concerned that with her current, restricted status, the four-footed friends wouldn't get closer than the sealed window of her door. Our nurse at the time said, "no" to dog visitors. But a more experienced nurse on the floor noticed that Talitha's room was not marked with the certain restrictions that preclude these dogs so after double checking, Rusty, who like the other dogs is cleaned to be hypoallergenic, was able to visit.

Talitha was SO excited until Rusty crowded her a little too roughly on the floor mat. After that, I had to hold her in my lap on the floor and do all the dog interfacing for both of us.

You can see the banana peel in the picture. Except for a couple bites that Tali took, the rest was gobbled up by Rusty much to Talitha's delight.

I'm so grateful for volunteers both formal and informal that make life better both in the hospital and in our community. What a difference they make!

I think Christ had volunteers in mind when he shared the following parable:

"Then shall the King say unto them on his right hand, Come, ye blessed of my Father, inherit the kingdom prepared for you from the foundation of the world: For I was an hungred, and ye gave me meat: I was thirsty, and ye gave me drink: I was a stranger, and ye took me in: Naked, and ye clothed me: I was sick, and ye visited me: I was in prison, and ye came unto me.

"Then shall the righteous answer him, saying, Lord, when saw we thee an hungred, and fed thee? or thirsty, and gave thee drink? When saw we thee a stranger, and took thee in? or naked, and clothed thee? Or when saw we thee sick, or in prison, and came unto thee?

"And the King shall answer and say unto them, Verily I say unto you, Inasmuch as ye have done it unto one of the least of these my brethren, ye have done it unto me." Matthew 25:34-40

Tali's Tile of Fame

The Primary Children's Medical Center has their own version of the Hollywood Walk of Fame.

When you walk down certain of the hallways here and look up, you can see tiles in the ceiling that have been painted by children who have "lived" here at the hospital.

Thanks to our brave friend Sada and her kind, thoughtful parents who have also been here at the hospital this week, Talitha received her tile-of-fame today.

And because it just happened to be Mother's Day, Tali decided to dedicate her special tile to one of life's very special heros, a courageous, extraordinary woman--her mom!


Tali was at first quite perplexed when the little pink sponges that normally are used only for mouth care became paint brushes. First her right foot was painted pink for the first print then wiped with a white towel provided by our nurse Kathy (who happens to adore Talitha).

The process of alternating feet with paint, then print, then cleaning proceeded quite smoothly as Talitha really started getting into it. Soon she wanted to control the little sponges-on-a-stick.

So, after the footprints and handprints were all complete, Tali got her wish and was able to do all the little sponge marks in the corner of the tile.

When the masterpiece was complete, she had no desire whatsoever to abandon the exciting new art form. Fortunately there was plenty of craft paper in the play room that another nurse was more than happy to procure. It wasn't long before the hands and legs and pink blanket on the floor mat had each welcomed, even embraced their abundant share of brightly colored paint.

Fortunately for dad, Tali's "favorite" aunt Chi Chi showed up just in time to rescue the upper left hand corner of the tile to ensure the special dedication to mom didn't become unrecognizable hieroglyphics.
 
Talitha just wants to let you know two things, mom:
1. I didn't throw up today, and
2. I love you!
 
HAPPY MOTHER's DAY!!!

Band-aids and Cranes

Today was a hard day.

Talitha is tired, keeps vomiting, has very little to no appetite, and now has diarrhea. She fell asleep on her Dad when they were playing on the mat (truth be told, they both had a half hour nap ;O). The good news in all of this is that her skin in the diaper area is holding up pretty good so far. It's just frustrating to have some of the more "normal" BMT problems that we haven't had to deal with as much before. It was so much smoother the first round...

I wish I could put a bandaid on it and make it all better. Oh how I wish. I know we shouldn't wish away our trials, they are the things that make us stronger, make us the people God wants us to be. But some days, I wish there were big huge bandaids.

This past week when I did one of my walks I decided to take a different route just to liven things up a bit. I was so deep in thought that I didn't pay attention to where I was heading and found myself a bit confused and "lost." Where I thought I was heading for a main road was actually not the one I wanted. I started looking for something to get my bearings. And then I saw them--the cranes!

Down below the PCMC they are constructing a new building and I have been watching those cranes since the first few weeks we were here (clear back in December!). I was soooo happy to have a focal point, something to get me out of this mess (I was a lot farther southwest than I had intended.) So head for the cranes I did go.

It was not as easy as I wanted it to be. I had to cross some busy roads, and make my way around buildings, and through parking lots. But, finally I got to the cranes and looked up to see the top of the PCMC. Happiness.

The next obstacle was to climb the hill and get to the side walk. It was a steep hill with lots of grass. When I finally got to the top it was a huge blow to find out I had two more darn hills to go. I couldn't see them before, my perception of what was actually there had somehow been hindered by trees, shadows, sunshine in my eyes, and maybe by my hospital-stay-brain.

So I kept climbing. And climbing. And then, when I finally did reach the top of that third hill, oh the joy!! I wanted to throw my arms out and spin around and sing a "Sound of Music" song (I restrained myself).

The cranes were not a bandaid for my problem, they didn't fix it. But, they did help me get focused and redirected and I am grateful for those cranes. I am grateful for so many things that help me stay focused. It is not always easy.

Would it be too much to ask you to once again pray for Talitha? I know He is listening and is nearer than we think.

The tired phase

Audrey has been comparing the blood results each day with their counterpart day from the last cycle. For example, today was day 4 since Monday's transplant so Audrey compared today's counts with day 4 from last cycle.

So far, the days are tracking almost exactly to what happened last round. Her counts are dropping slightly faster but along the same rise and fall pattern.

We expect that her ANC will be zero tomorrow as she is already starting to show the familiar signs of fatigue that accompany complete depletion.

This is the tired phase.

She is in the process of growing new bone marrow in all her bones throughout the body.

What a blessing that this is even possible.

Thank you for your prayers, love, and support.

Just smile

Sometimes in life there is pain, heartache, and tears. But sometimes the smiles are stronger than all that.

Life doesn't have to be perfect to find joy.

"In the world ye shall have tribulation: but be of good cheer; I have overcome the world." John 16:33

Found another room in the room

I guess creativity is only limited by imagination.

Talitha discovered that her hospital crib makes a fun tent if you cover it with one of the oversized blankets/quilts we sometimes find in the hospital blanket stash. Lots of blankets and quilts are donated to the PCMC which is great because of all the fun patterns and characters and colors that can brighten the bed (and floor mat).

So, the tent is now officially part of the hospital home and is requested daily along with the other four rooms in the room.

Talitha was very playful today and loves having her mom with her all day. Because her counts are so high from the stem cell boost, she had great energy today and was eating and drinking and playing at a really good level.

The white blood cell counts and ANC peaked today and will drop now all the way to zero if it is like the last bone marrow transplant round. The platelets are already dropping fast so Talitha is scheduled for a platelet transfusion tomorrow.

While Audrey was lying on her side on the floor mat today, Talitha crawled up behind her and rubbed her back while saying over and over, "rub, rub, rub."  Cute little moments like that have a way of keeping you going when the walk is long and tiring.

Thank you for your prayers and love.

Talitha is really doing well right now.

Please pray for Sada

Talitha's counts were up today due to the mass of stem cells transfused yesterday. (At the time of harvest, a certain portion of the stem cells are old enough to already be committed to become white blood cells and so this gives an "artificial" boost during the first few days of the bone marrow transplant process.)

That boost, however temporary, actually gives a lift to Talitha so her day was much improved.

We received a surprise visit from Sada and her parents yesterday at the hospital. (Sada lives less than a mile away from us and her grandparents live just a few houses away from us in our neighborhood. Sada has been fighting a different kind of brain tumor for a year longer than Talitha. Her blog is at http://www.sadanicole.blogspot.com/)

Sada is so bright and articulate. And she has such a bright outlook coupled with contagious enthusiasm for life. She almost made me cry when she handed over a zip lock bag full of money that she and her younger siblings raised to help Talitha. She simply explained that she'd read a book that had a powerful message about service and that she felt impressed to organize a project to help someone else who was facing a challenge in their life. (Wow!)

The reason Sada was at Primary Children's Medical Center yesterday was for an MRI to assess the need for another operation. Today--less than 24 hours after rendering service to Talitha and our family--Sada was in the operating room for another six hour brain surgery to remove more tumors.

Such selfless, Christ-like love from one who is herself in need of help and support is to me a living sermon that not only comforts and lifts but also gives me great hope that the teachings of our loving Savior are very much still alive and in practice.

Please pray for Sada and her family. Such kind and loving people. Such examples of faith and perserverance. They have been there for us along the way to shine a light to illuminate our path from their own experience. How we hope and pray their burdens may be lightened and that they may continue to be sustained by the same Heavenly Father we urgently look to for peace and strength in our moments of need.

Bone Marrow Transplant #2

This second "BMT Birthday" was rougher than the first.

As soon as the DMSO (the chemical mixed with Tali's stem cells to prevent damage during freezing) hit her system, she started showing signs of severe nausea.

Pretty soon she started vomiting and didn't really have much reprieve throughout the entire transplant/infusion process. It was really hard to see her get to the point of constant dry heaving.

We had a great nurse today and she thought to bring some warm blankets for Tali as the stem-cell infusion completed. This really soothed her and she was able to fall asleep in my arms for a long while.

Things improved as the day progressed.

Audrey brought all our other children to the hospital with her tonight so we could spend a few minutes together as a family. Of course, Talitha loved seeing everyone.

While we were together for a few minutes, we talked about faith vs. fear. We have experienced the reality first hand that faith and fear cannot be present at the same time. So, if you want to fight fear, you must build faith.

Here are four guaranteed ways to build faith in Christ:

• Read/search the scriptures daily
• Fervently and frequently pray to Heavenly Father
• Keep God's commandments
• Follow the counsel of God's prophets

We talked about the things in life that we can be afraid of (including cancer). The challenge now is to eliminate the dark places in our lives where fear breeds by shining the light of an ever-strengthening faith.

Our loving Savior knows that fear serves no one but the enemy of our souls. He invites us to have faith by focusing on Him and not the world.

"Look unto me in every thought; doubt not, fear not." (D&C 6:36)

Keeping it simple

If the treatment cycles one after another are meant to wear down the cancer, it appears to be having a similar impact on Talitha over all.

Two naps today just didn't quite do the job and I'm afraid she's starting to have aches that weren't as noticeable after the last high-dose chemo.

One really positive difference with this round is that Talitha is doing well with the multiply daily baths. (What a relief!)

Talitha took an early nap so I was able to go to church here at the hospital. There's a special spirit during the half-hour services. You come as you are and no one worries what your hair looks like (or if you have hair).

It's all about finding refuge in Christ. Nothing else matters.

There's something really beautiful about keeping it simple and real.

Nausea and great swerves

Talitha had a bit of a rough go today.

Overly tired.

Nauseous.

The Thiotepia (chemo drug) is responsible for the 3 baths a day. The Carboplatin (chemo drug) is responsible for the nausea. (The overly-tired comes from adjusting once again to the hospital environment that isn't very sleep friendly considering the constant parade of doctors, nurses, and technicians with their constant regiment of procedures and array of noisy, alarm-laden instruments.)

We attempted two naps today but didn't get very far either time.

Finally, at about 9pm tonight, I had everything set for Tali to go to sleep and stay asleep. We'd read "one more book" several times already; prayers completed; songs almost finished; and her two favorite blankets newly wrapped around her as she polished off her full cup of milk.

Well maybe you can guess where this is headed...

Without warning, Talitha was suddenly fussy and restless...then EVERYTHING came up...wave after wave after WAVE.

All over everything including the two favorite blankets.

I fully participated as a target in the event. (These green hospital clothes are actually quite comfortable. No wonder the doctors like to wear them in surgery.)

One of these days, I'm going to laugh during the I-can't-believe-this-is-happening-to-me-moment.

Today wasn't that day.

But I'm at least smiling now.