Bad Hair Day

We were told it would just be a matter of time. But it's still hard to see the hair start thinning. Audrey has always taken the time to do her girls' hair each day from the time they are babies till they're old enough to use a curling iron and straightener on their own. And with 5 daughters, she's really good at doing hair in about every way imagineable.

This is different. Audrey brushed Talitha's beautiful hair ever so gently today and held back the tears as the strands stuck to the brush. Then she put a cute little clip in her remaining hair so she'd look just a little bit dressed up for Sunday.

I guess that's how life can be. Sometimes we see the outward manifestations of the inward hurt; sometimes we don't. Sometimes the things lost grow back or are healed. Sometimes they don't or aren't. But for me, I appreciate in a whole new way the scriptures that tell us that "there shall not so much as a hair of the head be lost, but everything shall be restored to its perfect frame." So if God is able to restore even the very hairs of our head, how much more would He be willing to restore if we would just follow Him a little bit more and keep His commandments just a little better.

Maybe there's a relationship that isn't quite right, or an unspoken "I'm sorry". Maybe we could be just a little quicker to forgive and a little slower to judge or put down. Maybe if God really can restore what matters to us most either in this life or the life to come...maybe, just maybe it would be worth our while to find out how we can get closer to Him and let others know the good news we've found so they don't have to face the hard times alone or be so lost.

I'm so grateful for the light that's shining on our path. It's not such a smooth path right now but it is a path and there is a light shining on it.

"Pray for Talitha"

Talitha is in a rough spot. Her mouth is full of miserable sores, the "aftershock" result of the methotrexate. She's no longer dehydrated but her bone marrow production of stem cells is not yet keeping pace with the dying off of the rapidly replicating cell structures the chemo attacks.

Even in her painful condition, I'm moved to tears by her ability to be positive with each challenge that comes, some of which have become routine. For example, she recieves a shot each day to stimulate the bone marrow. She knows when the shot is coming now and whimpers and cries to let us know she'd rather we all just go away and leave her alone. Then the pain of the shot hits. But through her cries that quickly subside she exclaims in her little voice, "yay!"--a mimick of what she has repeatedly heard her parents say after she bravely takes her pokes and prods.

Oh, she is a valiant little soul. How much we can learn from little children!

As I was eating dinner in the hospital cafeteria, I looked down and saw the light blue wristband "PRAY FOR TALITHA". Thank goodness for prayer! It really can change the night to day.

------------

I received an email from a dear friend this week that helped me see new depth to the very familiar Psalm 23. I don't know who the author is as this portion of the email was forwarded. Maybe you will see these beautiful words in a new light too:

The Lord is my Shepherd----that's a relationship!

I shall not want----that's Supply!

He maketh me to lie down in green pastures----that's Rest!

He leadeth me beside the still waters----that's Refreshment!

He restoreth my soul----that's Healing!

He leadeth me in the paths of righteousness----that's Guidance!

For His name's sake----that's Purpose!

Yea, though I walk through the valley of the shadow of death----that's Testing!

I will fear no evil----that's Protection!

For Thou art with me----that's Faithfulness!

Thy rod and Thy staff comfort me----that's Discipline!

Thou preparest a table before me in the presence of mine enemies----that's Hope!

Thou annointest my head with oil----that's Consecration!

My cup runneth over----that's Abundance!

Surely goodness and mercy shall follow me all the days of my life----that's Blessing!

And I will dwell in the house of the Lord----that's Security!

Forever----that's Eternity!

Mouth Sores

There's some real challenges with the aftermath of the chemo in this first induction cycle. The white blood cell count has dropped from 2,500 on Sunday to 300 late Wednesday night to 100 yesterday evening. Talitha basically has no white blood cells left.

The fever has been up and down. Nothing is showing up in the blood cultures, urine sample, or mucous analysis yet. Still they are giving her antibiotics as a precautionary measure while the cultures are allowed to grow for 48 hours.

Unfortunately, Talitha has serious sores in her mouth that may be the cause of the fevers if they end up testing positive for some kind of herpes virus. Additionally, the sores are reducing her ability and desire to eat and drink.

Still she is fighting on. As must we.

I read a quote today that really moved me especially in light of the current challenges:

"If we do not have a deep foundation of faith and a solid testimony of truth, we may have difficulty withstanding the harsh storms and icy winds of adversity which inevitably come to each of us.

"Mortality is a period of testing, a time to prove ourselves worthy to return to the presence of our Heavenly Father. In order for us to be tested, we must face challenges and difficulties. These can break us, and the surface of our souls may crack and crumble--that is, if our foundations of faith, our testimonies of truth are not deeply embedded within us." ~Thomas S. Monson

We are trying to be strong and faithful at this time especially as we pray for and encourage our little daughter.

We are aware that many others are facing struggles and adversity at this time too. We are more sensitive now than before and hope that we may at some point be of help in lifting others as so many are generously lifting us.

The outpouring of love and kindness is extraordinary. Thank you for being the angels God uses to answer our prayers.

Fevers = Emergency Room(s)

We got back home from the Provo UVRMC Emergency Room at about 2am this morning and are now up at the PCMC Emergency Room in Salt Lake. Talitha will be admitted to the ICS unit again and will likely be here for at least the next 48 hours as they test her blood, urine, and mucous for the likely culprits that caused her fevers and then treat her with antibiotics.

Talitha is exhausted and took multiple naps throughout the day again. We are praying that her white blood counts will start recovering soon so she can fight off the bugs.

Thank you for your continued support, prayers, and encouragement. I will post more information tomorrow as it becomes available.

Update 1/27/10

Talitha didn't feel so good today. She didn't feel like doing much and was very tired, even took multiple naps throughout the day.

Tonight at 10pm when we took her temperature it was high enough that we called the on-call doctor in oncology at the PCMC and she told us to take Talitha to the emergency room at Utah Valley Regional Medical Center here in Provo to get blood drawn for a white blood cell count and for cultures. We said a prayer and took her in.

Her temperature had already dropped a bit by the time the admitting nurse checked.

The blood culture will take 48 hours to process but the white blood cell count was done in less than half an hour. Talitha is in the extreme danger-of-infection zone with a count that is now 300. (Anything below 500 is scary.) They expected it would drop very low during the week following chemo.

The good news is they did not have us take her up to the PCMC in Salt Lake. We must watch her closely and if she gets a temperature of 101.2 or higher, we will need to admit her to the hospital in Salt Lake for a minimum of 48 hours.

We hope her white blood cell is near it's bottom level and will soon start heading up. Talitha does not want to be in the hospital again so soon.

Update 1/26/10

Another trip to Salt Lake and back this morning. This time it was a visit to Dr. Walker, the neurosurgeon who did such an amazing job with Talitha's operation on Christmas Eve. He was very pleased with how her head is healing and thinks her eye movement is much improved and her movement on the left side--leg, arm, hand--is very encouraging.

She threw up this morning right before we left to Salt Lake. It happened right after Audrey gave her some medicine so it may have just been a gag reflex? She didn't have any more problems with losing-her-lunch the rest the day so I don't think nausea is intruding as much as expected.

(I'm kind of falling asleep typing so maybe the update is done for tonight...)

I'm grateful for kind people. Many of whom act without invitation. Our appreciation of prayer and strength from others will never be the same. Thank you.

Update 1/25/10

Talitha really loves being home. She adores her siblings and loves playing and laughing with them.

We took Talitha to the PCMC in Salt Lake this morning to receive another injection of Vincristine which was the very first chemo drug she received a week ago. She gets the Vincristine on days 1, 8, and 15 of each induction cycle.

Now that she's working to rebuild her blood counts, we will be giving her a shot in the leg each day of a substance called Neupogen that accellerates the recovery of white blood cells.

So far she has not needed any nausea medicine since leaving the hospital yesterday. (Yessss!)

She gets tired easily but still fights the morning nap.

We have to be as careful as we can with her since she would bruise easily in case of bumps and falls and would bleed much more if cut or injured due to the low platelet counts in the blood.

We got together as a family tonight and had a little meeting to sing, pray, talk, and encourage each other to keep going. We sometimes pick a family theme to remember throughout the year. This year's theme we chose is from the Bible: "I can do all things through Christ which strengtheneth me." Philippians 4:13

It's going to be a good year!

Finding Joy in the Little Things

Talitha made it through the first week of therapy. She seemed to handle the assault better than what I'd conjured up in my mind from the descriptions they gave us of what was likely to happen. I'm convinced her successful week had everything to do with the constant prayers and pleadings from thousands of people the majority of whom have never even met Talitha.

We continue to hope and pray the side-effects will be gentler than what we've been warned usually accompany such an aggressive cancer battle.

Talitha received a 6 hour IV of Cisplatin from 9PM to 3AM last night. Besides being the most nausea-producing of any of the chemos she's received during the last 7 days, it also carries with it the likelihood of "damage to the ear causing difficulty in hearing high pitched sounds." Several of the nurses explained that many small children that receive Cisplatin end up needing hearing aids. In my prayers lately, I've found myself pleading with the Lord to please weaken the cancer cells so the therapies will be successful in their elimination. I've been following that up with the earnest request that her healthy cells be strengthened especially so she may have the benefit of their necessary function as she grows and develops.

Please pray for Talitha's ears that they be healed and strengthened if it is God's will that it be so.

The best news for us right now is that Talitha was released from the hospital this afternoon and is at home sleeping in her own bed tonight! Being cooped up in that hospital room wasn't her first choice on how she would've liked to have spent this last week. She is so much livelier at home and seems to be much stronger already. (The blood transfusion this morning probably helped with her energy levels.)

Her ANC reading--no idea what that stands for but it has to do with her white blood cell count--was at 2,700 when she left the hospital today. Anything under 3,000 makes her extremely susceptable to infection. We are doing all we can in the home to help her stay germ-free and infection-free as much as possible. And we pray for her safety knowing that infections can come from anywhere including from within her own body.

So another leg of the journey is behind us with much road ahead and very limited visibility.

Tonight, we are finding great joy in the little things like sleeping in our own beds, being together as a family and having our baby home for few precious days.

Cytoxan (and other thoughts about life)

Where do people come up with all the weird names for the different chemotherapy drugs? My brother Evan is a Neurologist and he says they actually do market testing to determine what people will respond to best. I can't imagine anybody "marketing" chemo. If they do, they probably didn't do much market testing with Cytoxan. I mean, what does that word sound like to you? We know that chemo can be toxic to the system but they didn't even try to hide that fact with Cy"toxin".

Oh well. Too many medical terms, processes, and lists of possible side effects running through my head.

(I asked the nurse if we could get college credit towards a nursing degree for all this time spent in the hospital helping. She said that quite a few parents actually do get nurse certified because they do get so involved with the long term care in situations like this. Wow.)

Received a forwarded email from a friend of mine who is serving a two year mission for the LDS Church in the Dominican Republic. From time to time they have conferences with visiting leaders of the Church who help inspire them to do their best to bring people to Christ. During one of these conferences the visiting leader, David Bednar, opened up the meeting for any of the missionaries to ask questions. My friend raised his hand and asked the question, "How have you personally been able to put more trust in the Lord?" [This is something I'm trying to learn how to do so I read on with heightened interest.]

The answer my friend reported was very interesting to me: (1) serving His children, and (2) seeing the Lord 'touching' you or others in your life.

But the part that hit me the strongest was what this leader said directly to my friend while looking him in the eyes: "remember everytime the Lord has touched you and that will give you the patience and diligence you need in your life." [Isn't that amazing advice?!]

There's such an enabling power in Gratitude, isn't there? When we remember all that God has done for us, we have a grateful heart and have power to see the best in ourselves and others. And we want to be better and do better and help others along the way. But when we forget God's hand in our life--everything from the oxygen we breathe to the times He has helped us through the scrapes big and small--that's when we become blind to everything good. In our state of forgetful blindness we panic, fear, blame, and are miserable.

I've kept a journal for over 22 years now. There's a lot of travel-log type stuff I've written along the way that can bore you to tears but fortunately, there's also been a lot of writing about very special experiences with my family and children and life's endeavors that clearly demonstrate and help me remember the countless times God has been there for me and for those I care deeply about. The evidence I've accumulated over the years just from my life about the Lord's hand all around where I can see it and witness it personally literally fills handwritten books on my shelf at home.

Our lives on this earth don't begin with mortal birth and don't end with what we call physical death. It's not always easy keeping this perspective when you feel pain in the moment. But when I do remember, that's when I feel peace, hope, love, gratitude and so many other virtuous emotions that help to keep me sane through the deep trials that can come to each of us in life.

Let's all keep going with as much gratitude and remembering as we can muster. There's so much good we can all do in this world if we will.

Thank you all for your prayers and faith on our behalf. You have lifted our burdens and made them light.

Update 1/22/10

We met with the bone marrow transplant team this afternoon. Following the first 3 induction cycles of chemotherapy will be 3 consolidation cycles where they will hit her with a combination of even stronger cancer fighting chemotherapies that unfortunately will eliminate Talitha's bone marrow. To rescue her during these consolidation cycles, they will give her infusions of her own stem cells harvested after the second induction cycle.

Assuming this first induction cycle is no more than 1 month, we expect that her second induction cycle will begin around the middle of February with a full week in the hospital like this time. Then they will test her white blood cell count on a daily basis looking for a peak recovery day when the stem cell production is at its highest. At that point they will do another surgury to insert another double lumen catheter--this one in her groin area--through which they will pull her blood into a specialized machine that will strip off the white blood cells and then re-insert her blood into her body.

They will need to harvest 15 million stem cells per kilo of weight. (Talitha is about 11 kilos so they will need to get about 165 million stem cells.) The stem cells make up about 1% of the white blood cells during peak production so you can do the math on approximately how many white blood cells will need to be harvested during the operation. If they don't get enough on day one during the 4 hour procedure, they will harvest again the following day.

During each of the 3 consolidation cycles, they plan to use 5 million of her own stem cells per kilo (approximately 55 million each cycle) to rescue her / rebuild her bone marrow. The bone marrow transplant team was very positive about this procedure and indicated that little children tend to respond very well and are left without bone marrow for only about 5 days before the rescue cells rebuild it. During these consolidation cycles, they've indicated Talitha will be in the hospital for at least 3 weeks each cycle. (gulp)

I've sure I've way oversimplified everything but at least that's the picture we now see at the 100 thousand foot level.

Talitha loves to go on walks/stroller/wagon rides around the ICS. She's adorable and is trying her best to put up with the interminable nonsense of fussing nurses, stressed parents, and loss of appetite.

She wants everyone to know how much she loves you and how grateful she is for your prayers and faith on her behalf. It really, really, really helps.

Update 1/21/10

The methotrexate levels were down to 0.13 this morning and less than 0.1 by this afternoon so Talitha is now on to the next therapies. At 6PM tonight she was given Etoposide through a 1-hour IV. This was followed by Cyclophosphamide also given through a 1-hour IV. The latter drug must be immediately followed by MESNA, an injection that coats the bladder so that it doesn't get damaged.

There is some indication that ridges, a precursor to mouth sores, are already developing and this is impacting her eating. She asks for things to drink and then is so sad because the things she is used to don't taste the same and so she grabs at her mouth like there's a bad taste--which we are guessing there is.

On the positive side, she is learning new words every day and insisting on reading books as often as we will and going on walks around the ICS floor with her little face mask on.

Rejoice in Faith

I woke up this morning feeling a bit down. A few minutes of scripture study on my own and then a few more minutes with the children, followed by prayer, really helped.

A while later, I received a phone call from a close friend who had felt to share with me an impression that had come that he and his family were to "rejoice in faith" for little Talitha. As I spoke with him, he explained that "the blessings she has received and the prayers that have been offered up for her by thousands...have ensured that her life is completely in Heavenly Fathers hands." Exercising faith to rejoice even during the trials is one way we can show Him that we trust Him and are relying on Him when it matters most instead of tail-spinning lower and lower to the treacherous, often blind understanding of our own minds where doubts and fears prevail.

The beautiful hymn keeps coming to mind, "we doubt not the Lord nor His goodness; we've proved Him in days that are past." That's why we can build on the Rock with complete confidence and know for a surety that when the "rains come down and the floods come up" we can stand firm and not be washed away.

I'm learning that those storms of life can come when you least expect. And it can get crazy and it can hurt...alot. I'm also witnessing first hand that the power of God is real and that He is still perfectly able to quiet the wind and the waves.

Well, I accept the invitation to "rejoice in faith". I'm so grateful to the Lord and really do love Him. These experiences of the past several weeks make me want to be better and do better.

Talitha continues to do well. The methotrexate levels dropped to 2.4 this morning and are down to 0.38 tonight. Anything above 0.1 is toxic enough to burn her skin in the fingers and toes from the inside out so they are vigilant in monitoring her progress and are pleased that the levels continue to drop. They believe Talitha could be ready for the next chemo injections as early as tomorrow night.

Rejoicing in Faith,
William

Update 1/19/10

Now that it's been 24 hours since the Methotrexate was given, they are giving Talitha Leucovorin to help her clear the Methotrexate from her system and recover from its effects. In order for them to continue with the other therapy drugs (see yesterday's update), her Methotrexate levels in the body must subside to 0.1. They will be doing blood draws every 24 hours to see where her level is. Her level tonight is 17.85.

They seem to have the nausea under control for now. The biggest challenge is getting sleep. Due to kidney damage risk, they must keep substantial levels of fluid running through her system and confirm every two hours that her urine output is sufficient. Talitha is not yet at the level of exhaustion where she will sleep through a diaper change but I imagine it must be getting close.

First day of Chemo

Talitha was in good spirits most the day. She's not very excited to be back in the hospital but we expected as much.

Her new room is in the ICS which stands for Immuno Compromise Services (or something pretty close to that). They use extra precautions in this area because the children are not able to fight infection when their white blood cell count is knocked down.

We learned soon after getting settled that Talitha will likely be here for seven days instead of three because they start with a hard hitting chemotherapy drug called Methotrexate which must be completely out of her system (which can take as long as 3-5 days) before they can proceed with the Cisplatin, Cyclophosphamide, and Etoposide. They were able to give herVincristine at the same time as the Methotrexate.

It took most the day to prepare Talitha's PH levels and urine outputs in order to proceed. The chemotherapy started this evening about 6PM with an injection of Vincristine followed by a 4-hour IV of Methotrexate.

There are 3 chemo induction cycles scheduled. Each ideally will last for 21 days--7 days of chemo injections at the hospital followed by two weeks of recovery at home. Please pray that she may be spared complicating infections and that her white blood cell count will recover quickly so that she can stay as close to the schedule as possible.

Following the 3 induction cycles will be 3 more cycles (duration unknown because it depends on how Talitha responds) called Consolidation. During this period, different chemo drugs will be introduced that knock out the bone marrow requiring the need for Stem Cell Rescue (that's where they inject Talitha with her own stem cells that will have been harvested during cycles 2 and 3 of the Induction period.) Her own stem cells will literally rescue her in the later therapy cycles by building back her bone marrow for the necessary production of white and red blood cells and platelets.

If this is all very confusing, that's because it is all very confusing.

We are trying to learn as fast as we can so that we can be as supportive of Talitha as possible. We also are trying to understand what the new "normal" will be during therapy so we can best support our other five children.

We are so grateful for the kind and loving support our family is recieving. Thank you, thank you, thank you!

Starting Therapy

These (almost) two weeks at home have done wonders for Talitha. She is able to sit up by herself again and is moving her left leg more and more. Her left arm and hand are regaining their coordination a little more each day. A speech therapist came to our home yesterday to evaluate Talitha's progress and was pleasantly surprised that she is communicating so well only three weeks after her brain surgery.

Talitha is smiling, talking, laughing, playing, and in good spirits.

We feel more rested and are ready to face this next step with faith. There is no doubt that God lives and loves His children. The strength we have felt in answer to the prayers of so many is breathtaking. "Thank you" just doesn't seem to be adequate.

We check Talitha in to the Primary Children's Medical Center (PCMC) tomorrow at 10am. Her expected stay is 3 days. As this next phase of her journey begins, we are most hopeful that she be kept safe from infection as her white blood cells take such a hit from the chemotherapy.

Thank you for praying for her. The prayers of so many faithful, loving, family, friends, neighbors and others is overwhelmingly awesome to experience.

We love you!

Audrey and William

Update 1/13

[With Dr. Khatua, the expert brain tumor oncologist]

Talitha continues to rest and get stronger in preparation for her treatments that will begin next Monday. She even articulated “I love you” for the first time as she was with Audrey this morning.

The test we were most anticipating didn’t go the way we hoped. The spinal fluid is showing Medulloblastoma (cancer) cells which means the tumor has already started seeding to the spine. This means the treatment protocols will be substantially different than what we have been preparing for. We still have a lot of reading and learning to do but here is what we understand so far:

·Talitha will be admitted to the Primary Children’s Medical Center (PCMC) on Monday, January 18 for three days of chemotherapy treatment.

·There will be no radiation therapy as was previously expected. Because the cancer has spread beyond the brain, localized radiation therapy won’t work and Tali is too young for general radiation treatment.

·The chemotherapy will be harder-hitting and less spread out.

·Stem cell therapy will be a key part of this therapy protocol.

·The primary concerns are toxicity and infection both of which will be monitored closely.

·The actual therapy is a six month program but we are being warned that this time frame will likely be extended due to delays from sickness/infection which unfortunately are more common with the harsher chemotherapy.

·Dr. Khatua, the oncologist, is encouraging us to be optimistic and believe that Talitha will survive rather than focusing on other statistics that can make a parent go crazy with worry.

·The kidney test was favorable.

·The echocardiogram test was favorable.

·Talitha is very healthy outside the “little” cancer problem.

Thank you for your continued faith, prayers, and support.

Love,

William (and Audrey)

1/12/10

Talitha was up at Primary Children’s Medical Center (PCMC) again today for additional pre-therapy benchmark testing. They did a GRV test (I have no idea what that stands for) which has something to do with measuring kidney effectiveness.

We won’t have final test results on any of the pre-therapy monitoring until tomorrow’s meeting with the oncologist.

So, back we go tomorrow.

We’re really, really, really hoping the spinal fluid test will be clean.

More tomorrow…

William

1/10/10

Talitha has been making great improvements each day since coming home last Tuesday. Her neck is starting to hold her head up a lot better and we are sitting her up and trying to exercise her legs and arms a little bit each day.

On Friday, the last stitch was taken out where they closed the place the external drain had been. She also had a blood test to see if her sodium levels are doing ok. Her sodium is a "perfect" 140!

Thank you for all your love, support, faith, and prayers!

Tomorrow (Monday), Talitha will be at Primary Children's Medical Center for surgery to prepare for the chemotherapy. These are the 3 things they will be doing during surgery:

1. Installing a double lumen catheter / central line in her chest that will remain throughout the duration of her treatment and will be the portal through which the therapy medicines will be delivered.

2. Doing a spinal tap to remove fluids to see if her spine is clear of any Medulloblastoma "seeding". (Please pray for Talitha that the cancer will not spread to her spine.)

3. Performing a sedated hearing test to establish her baseline hearing capability prior to commencement of therapy.

My brother Hugh and his son Bryson set up a blog for us to use to write updates. As soon as the set up is complete, we will let everyone know so you can see the regular updates if you would like to follow Talitha's progress.

We have been very grateful for a few days of relative peace and quiet at home where everyone has actually been sleeping for a change.

Thank you again for your faith and prayers on behalf of little Talitha. Please, please, please keep it up....it's working!

For those of you who have seen the updates I’ve been sending out on William & Audrey Black’s baby girl, you know that the family has been through a lot in the last two weeks and is in for a long road ahead. (For additional information on what happened, please see the information at the very bottom of this message.)
Many miracles have helped Talitha survive to this point and William and Audrey are constantly expressing their gratitude when they call me with update information. It is still unknown how and what portion of the hospital ICU, surgery, medicine, and therapy bills will be covered now and in the future. However, if you combine all those expenses with non-medical costs such as travel, lost work, and home expenses it is enough to overwhelm anyone.
I’ve asked William & Audrey if I could set up an account that would make it possible for those who are interested to contribute what they can. Although it can be an awkward thing asking for help, they really do need all of our help to survive this ordeal emotionally and financially.
They have expressed gratitude for those who have been able to help with their stay away from home these past two weeks as Talitha was at the Primary Children’s Medical Center in Pediatric ICU for 10 days followed by 4 days in the Neuroscience Trauma Unit. The support from so many family and friends has helped make the burden lighter.
Please consider helping out if you can. I know William and Audrey don’t want to be a burden to anyone. At the same time, I know from talking to them that they are facing a situation well beyond their own and their family’s ability to provide for.
Many of us are trying to do what we can spiritually, emotionally, and financially for William & Audrey’s family. Hopefully, by working together, we can help William and Audrey keep their heads above water as they face a rough year ahead of cancer treatments for Talitha.

Please consider one or more of the following ways that we can all help them out:

1) Pray and continue to pray for Talitha and the whole William and Audrey Black Family

2) Send them an email of encouragement or support to: William@RiTraining.com and/or Onetreeblack@comcast.net (Audrey)

3) Contribute to the account I set up at Zions Bank on their behalf (Any Contributions will go directly to them)
Zions Bank , 1220 S 800 E, Orem, UT 84097
Account name: Hugh Black

4) Contribute online (Account Name: LittleTFund@gmail.com)

Another way to help out is to forward this letter to others you know who will want to be aware of what is happening and who might also be able to help. I’ve received a few email addresses from William and Audrey but I know there are a lot more people who know William and Audrey and who will help if they can.

Thank you all for helping William and Audrey and their family in any way you can. William and Audrey are very hopeful that things will work out for Talitha. There have already been miracles that have saved her life so we are very hopeful that it is a good indication that her work on this earth has only just begun and that she will be with all of us for many years to come.
Thank you once again, please don’t hesitate to contact me if you have any questions.

Hugh Black
ph.801.379.4011 (Direct Work Number)
cell.801.592.2406
home 801.798.2254

1/5/10

Brief update tonight – Talitha is home. William and Audrey are delighted. They said that Talitha has not slept for 4 hours straight at any time over the last 2 weeks. She took a nice 3 hour nap when she got home and they expect she will sleep well tonight. The doctors admitted today that the best therapy for Talitha at her age now is being with and playing with her siblings. William said he has never been so happy to do a batch of dishes before. There is no substitute for being home.

There is still a long ways to go and there will be many, many trips to the hospital for additional tests and therapy but William and Audrey feel that a huge blessing was provided them over the last 24 hours to help them get to this point and know that many many people were praying on their behalf. They are extremely grateful for the unexpected turn of events today.

1/5/10

Talitha will be released from the Hospital today. The doctors decided it would be okay to let them go home for a few days. They did the echo-cardiogram test and they will do most of the other tests in out-patient. Needless to say William and Audrey are very happy. I will send another update tonight.

1/4/10

Well it appears to be a roller coaster experience. About the time that William and Audrey think Talitha is close to being released from the Hospital a new series of events or doctors step in with new plans. Her sodium is low but stable so they have once again removed the sodium treatments as they are not able to get it to rise regardless of what they give her. They removed the tube that went to her heart where they were doing the blood draws so now she is really free of almost every tube. Today she was visited by therapists, occupational therapists, and oncologists. They have decided that they would like to actually start the Chemotherapy treatments this week or within the next 7 days and so they are now going to have her do a number of tests to determine if everything is okay to proceed.

Tomorrow they will do a heart echo test, a hearing test, and a kidney test to specifically prepare for the chemotherapy. However, she will need to be sedated tomorrow in order to do this. While they have not seen any issues with the fluid that was being drained from the head previously they will do a spinal tap as well to ensure that there is no cancer evident in the spinal cord. The oncologist said that there are three things that are critical for them to get a survival rate of this cancer up as high as 70%.
1) The majority of the tumor needs to be removed (That has happened)
2) They need to start the chemotherapy within 30 days of the operation (This will most likely happen)
3) There needs to be no cancer in the spinal cord (That appears to be the case)
The only thing going against Talitha at this point is her age. They cannot do the radiation therapy which would really make a fairly quick impact on eliminating the cancer.

The oncologist told William and Audrey that Talitha has a very treatable cancer. However, they need to get things moving as soon as possible to keep the chances as high as possible.

Talitha is speaking constantly and is using her left side more all the time. She is also sleeping better which is encouraging. She is able to put food to her mouth with her left hand which is also good. She can hold her head up by herself but she does not like to do that. She will need to continue to learn how to hold her head up, sit up, crawl and walk again. The therapist is specifically trying to help her use her legs more as that becomes very critical in the development.

This is quite an update but it appears that Talitha is rapidly moving to the next stage of treatment. She will need the continued prayers of all to help her through these challenging times. Miracles have truly taken place. There is no question but what the prayers of so many have been answered and William and Audrey are so grateful for the support, the help, the thoughts, the fasting and the prayers of all.

1/3/10

The doctors liked what they saw on the 24 hour watch of the shunt being clamped off so they have now removed the shunt completely so she no longer has a tube coming out of her head. Everyone is very happy about that especially Talitha. Talitha is quite disgusted with anyone with a nurse or doctor badge or outfit and is very ready to go home. She has had enough of this hospital business. There are so few patients in the Neurolgical Trauma area that they moved Talitha to room 2026 so the patients would be in rooms close together. Tomorrow, they will most likely do a CT scan again to determine if the ventricles in her head have returned to normal size. If so she will be getting very close to being ready to be released.

Talitha ate all of her pancakes and eggs this morning for breakfast which delighted the doctors. They are very happy that she has a healthy appetite. Her movement in her left side is getting much better which is very encouraging. Additionally, as far as William can tell she has her entire vocabulary back. William and Audrey brought the entire immediate family into the room with Talitha today and she laughed and played with her brother and sisters. She really had a good time and it was very therapeutic for the family.

William and Audrey are astounded at the power they feel and the miracles which have taken place thus far. They recognize that many are praying and now quite a few others are also fasting either for the first time or again for Talitha. They are extremely grateful for the outpouring of love and support and the power and focus of the prayers on their behalf. The next 24 to 48 hours continue to be critical as the ventricles need to return to normal size or they will probably need to operate and put a permanent shunt internally.

1/2/10

The doctors liked what they saw on the 24 hour watch of the shunt being clamped off so they have now removed the shunt completely so she no longer has a tube coming out of her head. Everyone is very happy about that especially Talitha. Talitha is quite disgusted with anyone with a nurse or doctor badge or outfit and is very ready to go home. She has had enough of this hospital business. There are so few patients in the Neurolgical Trauma area that they moved Talitha to room 2026 so the patients would be in rooms close together. Tomorrow, they will most likely do a CT scan again to determine if the ventricles in her head have returned to normal size. If so she will be getting very close to being ready to be released.

Talitha ate all of her pancakes and eggs this morning for breakfast which delighted the doctors. They are very happy that she has a healthy appetite. Her movement in her left side is getting much better which is very encouraging. Additionally, as far as William can tell she has her entire vocabulary back. William and Audrey brought the entire immediate family into the room with Talitha today and she laughed and played with her brother and sisters. She really had a good time and it was very therapeutic for the family.

William and Audrey are astounded at the power they feel and the miracles which have taken place thus far. They recognize that many are praying and now quite a few others are also fasting either for the first time or again for Talitha. They are extremely grateful for the outpouring of love and support and the power and focus of the prayers on their behalf. The next 24 to 48 hours continue to be critical as the ventricles need to return to normal size or they will probably need to operate and put a permanent shunt internally.

1/1/10

Talitha is out of Pediatric ICU. (Happy Day) She has been moved to the Neurological Trauma Care unit on the same floor in room 2016. Her shunt has been clamped off and they will continue to watch her closely. After 24 to 48 hours they will do another scan. If the ventricles in her head are not enlarged and it appears that she is properly draining the fluid from her head then she will have the shunt removed from her head. Today more of her vocabulary has returned and she is not only smiling but occasionally giggling. It is wonderful to see the positive signs and William and Audrey are extremely grateful for everyone’s prayers and support. It is a wonderful way to start the new year. There are still a lot of hurdles ahead but the progress is really boosting William and Audreys spirits.

Tonight Audrey will take all of the rest of the kids home and we will drop off Afton and Madeline when they arrive home.

Please continue to pray for Talitha that her recovery may continue to go well.

12/31/09

Talitha continues to make progress in various areas. She smiled today for the first time which was a wonderful delight for her parents. She loved having books read to her today. Unfortunately her pain was worse today primarily from the increased pressure on the shunt. She is still in the ICU unfortunately due to some much lower sodium levels but they are still working with her to see what will work the best. William thinks Talitha has decided to stay in the ICU for another day so she can say that she stayed in ICU for two years.

William and Audrey met with one of the oncologists today for the first time. They will have a meeting on Monday as well with the primary oncologist. The oncologist that came by today said that her tumor is one of the very nasty cancerous tumors but fortunately the options in the chemo treatments today unlike the past make it much more likely for survival. However, they will need to be very aggressive on the treatments.

We need to continue to pray fervently for her recovery and also to help prepare William, Audrey and Talitha for the long road ahead. They continue to be very appreciative of the wonderful support and the prayers on their behalf. They wish everyone a very happy new year.

On behalf of Laura and I we also wish everyone a very Happy New Year as well.

12/30/09

Talitha made the most visible progress today of all the days so far. She started talking a lot today. They are basic words like “more” but William said she was basically talking from 8 am this morning till about 8:30 tonight when he left the hospital. She had learned how to sign the word “please” before the surgery and she was signing “please” multiple times today. She gave high five’s to her brother and sisters today. It was a slow high five but it was still a high five. She was able to reach for the cheerios and grab them and put them in her mouth. Her eyes are moving much better today. She is not able to completely focus yet but when William asked “Where’s Mommy” she looked over at Audrey. When he said “Where’s Daddy” then she looked back at William. When he said “Where’s Talitha” she took her hand and patted her chest. When William left tonight he said “Bye Bye” and Audrey told Talitha to Daddy “bye bye”. She lifted her right hand and moved it up and down in a “bye bye” motion.

Talitha is now weaned off of the sodium drip. If she makes it through the night with no issues then she will be moved out of ICU tomorrow. William and Audrey once again are so grateful for all of the prayers on their behalf and have been informed that Talitha’s name has been placed on prayer rolls in temple as far as Australia and New Zealand. They are very grateful for the miracles that have come about as a direct result of prayer.

They ask that everyone continue praying for her continued progress and now to pray specifically that the fluid in her brain may start to drain normally. Currently she still has the external shunt but they have been increasing the pressure in hopes that it will start forcing it through the normal channels. Currently they have the pressure at 15 cm. If she seems okay with that then they will move it to 20 cm. If she is okay at 20cm then they will clamp it off and watch her closely for 24 hours. If she is okay after it is clamped off for 24 hours then Talitha gets to go home. If they are not able to clamp it off or if they clamp it off and there are problems then Talitha will need to go into surgery again where they will place a permanent internal shunt from the brain to another part of the body. Hopefully that will not need to happen.

Very positive day today. Once again they express their deep love and gratitude for everyone and their prayers and support.

12/29/09

Grandma Wood loving Tali

Talitha has better color today than previous days. They were concerned about her bowels seeming to not be as productive as they would like so they gave her a suppository in the morning and she had three straight big bowel movements so the doctors and nurses are satisfied in that area for now.

Talitha’s sodium levels seem to stay at 130 or 131 so the doctors are finally calming down about the sodium levels and have determined that that is her level because no matter what sodium treatments they give her now it seems to always settle at 130-131. They have decided therefore to start weaning her off of the sodium infusion and once she is weaned they will watch her for 24 hours and if she is okay then she will be released from ICU.

William and Audrey were able to hold Talitha alot today and they enjoyed that. William and Audrey also were able to go on a date to the cafeteria together tonight and William said that they both seem to be in good spirits. He wanted me to make sure that everyone knows how much they appreciate the prayers on their behalf because they are literally feeling a power beyond their own and it has been confirmed to them that it is the prayers on their behalf.

When Talitha is released from ICU then the restriction will be lifted regarding only the parents and grandparents being able to stay with Talitha. At that point they will be able to designate additional other people that are allowed to stay with her. That will be helpful because right now William and Audrey are able to get 3 to 4 good hours of sleep at a time. They will need some assistance at that time so they can get some better sleep.

Talitha does seem to be improving each day and William and Audrey are in good spirits.

12/28/09

Neurosurgeon, Dr. Walker (our hero) with Talitha

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Talitha is eating very well today as well as drinking well. She had a good bowel movement today without them stimulating the bowels which was a good sign. Unfortunately her sodium levels actually dropped lower to about 130 today. Dr Walker the brain surgeon is not concerned about the sodium levels but the ICU doctor is concerned based on fairly recent studies around the affects of low sodium levels and so because she is on the lower borderline of dangerous he wants to keep her in ICU. Dr Walker made the comment “it’s a wonder any of my patients survived over the last 30 years without these new salt treatments…” However, while he has expressed his opinion to the ICU doctor he respects the decisions of the ICU doctor.

William said Talitha seems less responsive today than yesterday despite all the good signs of eating, drinking and the bowel movement. Overall he says there are good signs of improvement and the CT scan today showed there is no internal bleeding in the brain which is very good but there is still larger fluid levels than they would like and that continues to add to the pressure in the brain. They are approaching the 80th and 90th hours where the maximum swelling should be so they are hopeful that there will be some good progress in the next 24-48 hours. William says he is finally learning the meaning of patience because as soon as he stops being inpatient then he calms down enough to see the good progress that is being made.

William and Audrey continue to be extremely grateful for everyone’s prayers and thoughts. They realize this is the beginning of a very long process.

12/27/09

Talitha trying to get comfortable in PICU

Talitha sleeping with her ostrich named "Stretch"

Talitha is doing better today. Her eyes are much brighter than the last few days. She is eating some solid food (yogurt, oatmeal, and a piece of a pancake) and has kept it down. Her eyes still do not focus as well as they would like but they are getting better. She is responding better to sound. Her head still seems to hurt her if she moves it too much but still better than before. According to William the only thing that seems to be keeping Talitha in the ICU is her sodium levels. Her brain seems to discard it as quickly as she is receiving it. Please continue to pray for this to improve. William and Audrey are seeing miracles each day and know it is a direct result of the prayers on their behalf.

Above all Talitha was able to get some very good rest today and William and Audrey are very grateful for the way the family and friends visited today and gave good support in brief visits. It was very refreshing and rejuvenating for William and Audrey and they want to make sure everyone knows how much they appreciate the prayers and thoughts at this time. William was able to attend the 30 minute church service at the hospital as well.

There are still no concrete decisions around Talitha and so William and Audrey will be trading off shifts when the nurses trade shifts and they will spend the shift change giving each other updates.

12/26/09 Letter From William and Audrey

Dear Family and Friends,

We are overwhelmed with gratitude for the love and support we have received as we have been hit with this very unexpected trial. The Lord has sustained us and your faith and prayers have called down the powers of heaven on our behalf in ways that have taken our breath away and strengthened our testimony that God lives and knows us and has infinite power to help us through our trials while teaching us lessons that could come in no other way.

We have never been through something like this and already feel the awkwardness of not knowing what to say or how best to respond to the overwhelming outpouring of love and support. We apologize for not being able to update everyone personally each day. Please forgive us. We are sleep deprived and not always tracking so well. We are now trying to give updates to just a handful of people who are uniquely positioned to pass along the updates effectively. We love each of you and pray that none of you will ever feel slighted or left out for not hearing from one of us personally.

Having said this, we are acutely aware that we need each of you to get through this huge test in one piece. This is one of those trials that may be with us for a while and we are trying to adjust to this reality. And, we still don’t know what we don’t know and don’t have answers for the majority of the questions we are receiving. The most common question is, “what can we do to help”. Unfortunately 99% of the time, we don’t know what we need yet.

Unlike when one of our children was born, this experience requires more support that gratefully receiving the well wishes at the hospital and the delicious meals while getting adjusted to a newborn. Think of it like being thirsty. When you are really thirsty, you really need a drink. But when you’ve had a good long drink, you’re no longer thirsty and being constantly given more to drink goes from being overwhelming to annoying. But if everyone stops offering water because we didn’t need it at the moment it was offered, what will we do when we need water tomorrow or the next day? This is our dilemma. If only there was a way to store the outpouring in a big tank and then draw from it as needed. But right now it feels more like a fire hose—too much pressure to do much with.

Please, please, please don’t give up on us. Please keep praying for us, the Lord knows how to manage that “fire hose” and is lovingly producing a gentle flow of miracles from your faith, prayers, and fasting that is amazing and constant.

One of the many flows of miracles has been that so far, Talitha has avoided the need for a back-to-back operations. She has gone from being unresponsive to now she is drinking liquids and even able to eat a little. There was a need for lots of stimulation and now that the neurological responses are improving, we are being advised that she needs more rest and lest stimulation. We need to see her sodium levels increase from the low to mid 130s up to 140+. This will help with the swelling in the head that is causing the lethargy and other challenges to recovery. Please pray that Talitha’s body will respond to treatments she is receiving and be able to quickly get out of ICU. We have both been able to hold Talitha and she is responding more and more and has even said a few words which was another miracle.

We apologize that the visits over the next few days will have to be kept to a minimum. We are being advised that visitors to Talitha’s Pediatric ICU room will need to be extremely limited. We are trying to take pictures along the way and hopefully, will be able to post these and other messages to a blog.

We love you. Thank you for helping us bear our burdens that now would be too heavy to carry alone.

William and Audrey

12/26/09 Update

Lonely hours in Pediatric ICU

William returned a call and spoke with Susan this morning (Saturday) at 10:30. He described a roller coaster night with current status looking pretty good.

Around midnight William, acting on inspiration, convinced the nurse to let him use a pink swab to moisten Talitha’s mouth. The nurse relented only after she squoze most of the water from the sponge. Talitha responded very well. She went after the water in the sponge with great gusto. She spoke a few words. They were very encouraged.
William held Talitha as they both fell asleep in the chair.
Around 2 AM, alarms started ringing. They awoke to find the artery line in Talitha’s arm had come out and blood was spurting everywhere. They were able to get things back in order and cleaned up.
Normally, as nurse shifts are changing, in the 7 am to 8 am and the 7 pm to 8 pm hours, parents and visitors are not allowed into the ICU patient rooms. This morning, however, William was not kicked out. Instead he stayed and prevailed with the doctors in his insistence to give Talitha water to drink. Again, she became very responsive as she drank 1st one ounce of water and then 15 minutes later the doctor said to let her have a sippy-cup. At that point she drank 2 sippy-cups of pedialyte. She talked and moved better than she has previously. Shortly after these successes, they brought a menu in so that she can eat and drink as she desires.

William was traveling to Grandma Wood’s house to sleep and Audrey has taken up the next shift with Talitha.

William and Audrey express their gratitude for the help, faith, and prayers from everybody in their behalf. They specifically request that people keep praying that Talitha’s swelling will go down and that her sodium levels will rise to the proper range. They are very hopeful that Talitha will be able to leave ICU within the next 24 hours.

12/25/09 Update

On Christmas...a mother holds her baby

Spoke to William about an hour ago. Talitha is not responding the way the nurses would hope. The doctor believes the swelling is causing pressure on the brain stem and thus causing the lack of normal response. Ben and Susan are up there now. For now Talitha will stay in ICU until they see a more normal response.

12/24/09 Post Surgery (Doctor's Report)

Talitha with Mom in ICU recovering from surgery

Stiches on back of Talitha's head

The doctor removed virtually all of the tumor except a very small portion growing into the brain stem. The part of the brain stem it was growing into affects the facial muscles on the left side of the face. He took it as close as he dared but he will be watching her closely as she wakes up to see if there is any noticeable effect.

She will need chemotherapy. Due to her young age they will not do radiation. She will be fairly heavily sedated for the next 24 hours until they complete the MRI tomorrow. The doctor said that the MRI will probably show it is completely clean but he said there is a little bit in the brain stem. It did not originate in the brain stem fortunately.

She will have the tube to drain the fluids for the next few days. The doctor said she is recovering very well. She did lose one unit of blood and so they did need to do a transfusion. However, he said the overall operation went very well.

12/24/09 Surgery Update

Update: At about 11:30 they called to the waiting room and said that she is doing well so far. They are working on the tumor and there is not as much bleeding as expected which is a huge blessing because it makes it much easier to operate. They said the next update will be either a time update or to tell us that they are closing up the surgery.

Thank you for your continued prayers and fasting. It is being felt!

Update 1:11
Everything is going well. They are now closing the surgery. It will take about 45 minutes to close. No other information was given. The doctor will come and get William and take him to ICU where Talitha will be recovering and give an update.

Talitha's Story

On December 23, William and Audrey’s 16 month-old baby Talitha had an MRI to see if they could find out why she was beginning to lose her balance when walking.

Unfortunately (or fortunately depending on how you want to look at it), the scan showed a substantial brain tumor that was causing severe hydrocephalus.

They immediately took her to the Primary Childrens’ Medical Center (PCMC) where she underwent a 6 hour operation on Christmas Eve to remove as much of the tumor as possible and get a drain in her head to release the built up pressure.

She was in the Pediatric ICU for 10 days from December 23, 2009 to January 1, 2010 and then in the Neuroscience Trauma Unit for 4 more days.

Tali began intense chemotherapy on January 18, 2010 to fight the Medulloblastoma cancer.

The hardest part for Audrey and William is seeing their baby suffer. They have expressed gratitude for the life-saving miracles from God they feel have been granted as a result of so much fasting and prayer by so many concerned family, friends, and neighbors.

Currently, baby Talitha is undergoing Bone Marrow Transplant in addition to the ongoing cancer fighting chemotherapy.

As a result of the brain surgery in December of '09, Talitha lost her ability to talk, walk, and eat and has been much more like a little baby. The good news is that prior to beginning chemotherapy, her speech entirely returned, she was able to sit up again, the coordination in her left hand and arm were dramatically improving, and she was eating normally. The doctors believe that with therapy she will be able to learn to walk again.

Obviously, it has been an emotional roller coaster for Audrey and William and their family. Their faith in God is strong and they are putting their trust in Him and receiving strength to make it through this trial.

Thank you for your prayers, faith, and support on their behalf.