Sunday, February 28, 2010
The greatest challenge of the day was trying to get the diarrhea slowed down. (Tali's little bottom is as raw as I've seen.) I'm not trying to be gross but the nurse finally came in with some new supplies and a process they use in the Intensive Care Units when the skin gets so bad it even bleeds: the process is called "crust the butt". And that's pretty descriptive for what you do.
After spraying the area with a solution and letting it sit for 3 minutes, you wipe everything clean and then apply a special powder followed by an effective barrier substance. (You repeat the powder and barrier three times.) Then you apply Calmoseptine an amazing cream that did wonders in helping when the diapers were full of chemo stuff.
During each diaper change thereafter, you try to wipe off just the Calmoseptine and then repeat the powder/barrier routine.
They discharged Talitha at about 5PM from the hospital and as always, she is so happy to be home. Audrey gave her a soothing sponge bath and her meds and she is now sleeping like...a baby.
Saturday, February 27, 2010
You know it is really true that necessity is the mother of invention and we have made some very innovative "toys." Today we made a house for some Littlest Petshop animals out of an empty wipe container. The little containers that the brown sugar (for cream of wheat in the morning) comes in has been used to put fishy crackers in--a great aquarium. If you haven't played with the Fisher Price Little People for a while--it's time to sit down on a rug with a child and play! Talitha is really receiving a lot of one-on-one with her parents (and nighttime sitters).
Talitha also received benadryl today (which made her sleepy) before a blood transfusion (which gave her a little more color). Then she got one wicked bloody nose which made them run to get her platelets (again) which helped her clot and made her a little more perky. Then she got her new, and second, antibiotic (for the over zealous bacteria)which, once they were all done with all of these procedures, made her break out in something that looked like hives. Which made them give her benadryl again...which made her sleepy...
So I'm thinking about cause and effect tonight and how "life's a great balancing act." A long time ago a dear friend of mine gave me a copy of the book, Oh The Places You'll Go, by Dr. Seuss. If you haven't read it, or it's been a while, I invite you to find a copy and read it. Lines from it pop up in my head from time to time--I have it pretty much memorized from reading it over and over (and over) to our children. For sure we are going to get things in life that cause us to grow and stretch in ways we never thought we could or would (or wanted to). For sure there are moments when we would just rather not have to deal with all the pressure, stress and pain of it all anymore. But the book reminds us that we're the kind of guy that goes on, "though the weather be foul, ...or your enemies prowl, ...or the Hakken-Kraks howl." Yes, on we will go. Because we know there is something better at the end, something worth fighting for. Because, in the words of Dr. Seuss, after we do all we can do and face up to our problems, we will succeed "(98 and 3/4 percent guaranteed) KID YOU'LL MOVE MOUNTAINS!"
Thank you for helping us with Talitha's mountain.
Friday, February 26, 2010
Alas, she didn't quite make it over the hump. She is up at the hospital tonight with Audrey and they will probably keep her there now at least until her blood counts start heading north.
I would've preferred that both Audrey and Tali be at home tonight. I just try to remind myself that things like Talitha's fevers aren't catching the Lord by surprise.
Could it be that faith without patience is just fair-weather believing?
Just spoke with Audrey. Talitha is finally sleeping. She was shaking quite a bit earlier this evening--a result of fevers and depleted blood counts. They opted to wait on the blood transfusion to see where her counts are tomorrow morning.
Thursday, February 25, 2010
The emails, cards, and letters we receive are filled with kind words and expressions of faith and hope. Thank you. We save these inspiring messages. I dream of one day sharing them with Talitha. I want her to see and read and hear the expressions of faith of those who are praying for her throughout the world.
You may have noticed on the right-hand side of the blog--immediately to the right of where you are now reading--there is a link called "Messages of Faith, Hope, and Gratitude". We've already started taking small excerpts from the emails, cards, and letters we've received and included these on that page. So many of these have come at just the right moment when we needed an extra boost.
You can see from the ones already posted that everyone has a unique way of expressing faith, hope, and gratitude. (Once in a while the expressions have been humorous and that's given us a chance to be encouraged while laughing--a needed reprieve at times when the stress is getting thick.)
There is no wrong or right way to express heartfelt sentiments. We've been so blessed by these messages and thought that maybe it would be nice for others to see these expressions that lift and can help all of us in our moments of trial.
Faith, hope, and gratitude have been such valiant companions to us over these last weeks. These enabling powers and virtues from God are among the precious gifts He provides to His children to help us be strong even when we don't feel so strong.
You'll notice that I just abbreviate the names when I give credit for the portion included from the emails, cards, and letters we receive. I will try to post as many portions of messages we receive as time will allow.
I hope you'll click on this link over on the right-hand side from time to time so that you might be lifted as we have been as everyone shares Messages of Faith, Hope, and Gratitude.
Talitha is struggling a bit tonight. We've been advised that the extreme amount of stress placed on the bone marrow both from the chemotherapy and the subsequent neupogen [count-stimulation] shots is likely causing intense aches in her legs. (No wonder Tali doesn't like to stand up much the week after receiving the chemotherapy.) We're grateful her mouth is still holding together without those painful sores (and no fever). Now we are hoping the aching in her bones will soon subside. (She almost took her neupogen shot without crying tonight but it finally got to her right at the end of the injection. She's so brave it makes me want to cry; and I do.)
Wednesday, February 24, 2010
Unless it's a small child, I usually decline whatever the offer is and try not to waste their time or mine.
Two older girls came selling to our door tonight and given Talitha's low blood count I just stepped outside to talk to them even though it was a bit cold. The older of the two had a prepared speech as often is the case and I listened politely. One of the girls is from Cincinnati and the other is from Atlanta. They are here in Utah with a group that, according to their story, helps people like themselves escape the inner city "dead-ends" by providing income and a way to go to college.
They explained that they both have children and were "rescued" from dire situations by this group that helps girls like them have a second chance. Of course, the story is designed to pull at the heart strings and encourage people to support them in their quest to earn points (and money) rather than being overly concerned about what it is they are asking you to buy--in this case magazines.
When I interjected and told them about Talitha and explained that we are receiving donations from people to help with the many expenses related to her treatment and recovery and that I didn't feel right about buying something under the circumstances, I learned a valuable lesson from their reaction.
First, the older girl seemed a bit taken back. Now off script, she expressed sincere sympathy. But it was the younger girl--the one that looked like she was 14 but evidently is really 19 and has a two year old boy--that took my breath away. Up to this point she had been extremely shy hardly saying more than a few words and only when asked a question. Suddenly, she looked me in the eyes and literally testified to me of God and how He can get us through any trial no matter how tough it might be. She further stated that she felt our baby would be ok and that she believed God would help our baby and us. She said that God tests us all to see if we will be faithful and she knew this because of the trials she's been through in her life living in such harsh circumstances.
I wish I could quote her exactly. It was so pure, so sincere, so soothing to hear. I just quietly listened and thanked her for helping lift me. She appeared almost apologetic afterward explaining she just felt those words come and had to say them. I could not have been more grateful to her for being so brave and sharing from her heart and I told her as much.
Well, by this time, I figured I better buy one of the magazines and so I asked them to find me one that didn't cost so much.
Imagine my surprise when after fumbling with her brochure for a minute, the older girl finally closed her book and told me she couldn't do it. She wouldn't let me buy from her under the circumstances. And if that wasn't shocking enough, she then reached in her pocket and pulled out a $20 bill to give to me. By this point, both girls were crying--especially the younger one--as they told me they would pray for us and our girl.
I'm not sure if I was more shocked or just plain moved. They tried to insist I take the money they offered but I successfully declined after several attempts. I removed my "Pray for Talitha" wristband and gave it to the younger girl and asked for their names so that I could pray for them too. (I have no idea how to spell their names but phonetically it's approximately "Marquida" and "Shay".)
I hugged them and they were gone before I knew it.
Still in somewhat of a state of shock/wonderment, I simply walked back into our home and wrote a few thoughts about the experience while trying to digest what had just happened. What warmth I feel as I contemplate the goodness of these young girls. I pray that the company they work for isn't just taking advantage of them and others in similar circumstances. But regardless of the facts surrounding the encounter, what I do feel very strongly is that two "homeless" girls bearing burdens larger than they should be carrying at such young ages rose above the stifling circumstances of the world and their own condition to bear witness of a power greater than poverty and greater than a baby's cancer.
Oh, what good can be done in this world by the least likely people, in the least likely ways, and in the least likely places!
And don't we all fit that description?! Aren't we all the least likely? Don't we all fall victim from time to time to that unfortunate thought that there's nothing we can do to change this world for the better?
Well what if we could?! What if we were able to put our "scripted" sales pitches, agendas, fears, anxieties and vulnerabilities aside and just let the words come out that God puts in our mouth. What if we could be just a little more like these two angels that came to our door tonight delivering a little more hope and a little more encouragement to stay true and be believing no matter what.
I don't believe it will be the large, notable acts you hear about in the news that will effect the greatest long-term change for the better (as important as these large efforts are). I think it will be the willingness of individuals to do the "little" things on a consistent, daily basis when no one is watching or when it's not a so called big deal. The sum of such constant good, compounded over time, will be the greatest force for good with a reach far enough to lift all God's children as never before.
Though we look to Christ for salvation from death and sin by virtue of his resurrection and the power of His atonement, it is his daily teachings of simple virtues and the commandment to love our neighbors as ourselves that has changed the world and does the most in our modern day to prepare hearts to receive the Good News filled with its saving principles and ordinances.
I'm so grateful for the peace the Lord graciously shared with me tonight. How I hope and pray we might each be willing instruments in the Lord's hands. There's great power for good in it.
(Please pray for Marquida and Shay. Please pray that their burdens might be made lighter and that they and their children may be blessed and helped on their journey.)
Talitha's white blood counts are still zero. The platelets are good now following yesterday's transfusion and the red blood cells continue to remain stable. There's a new number we'll be tracking in preparation for the stem cell harvest. Can't remember the exact name of it--something like CD34--but it needs to get to a 10 before they schedule Talitha for the groin catheter placement and the harvest procedure.
We'll be taking Talitha to the PCMC each morning until we get word that the bone marrow counts are sufficient but not overly "mature". Evidently, the window for this harvesting is quite narrow and that explains the need for daily measurements.
Tuesday, February 23, 2010
Everything is somehow ok when Christ is in the picture.
I have to confess that Talitha's pathetic little cries when she is in pain or is deeply uncomfortable just break my heart. They are usually much quieter cries than they used to be and a higher, almost raspy pitch. She's just so worn out. (And yet she still finds a smile or two for the camera.)
She used to love bath time and now it's just not the same. Her chest catheter with it's accompanying bandaging must be kept out of the water and so we have "aqua guard" sheilds with their own adhesive to cover the gear as you see in the picture above. Ordinary things of life like eating, drinking, bathing, dressing, brushing, and sleeping aren't so ordinary anymore. "Create a new normal" seems to apply most to the basics of life.
Trusting in the Lord is one of those things that can seem so hard until you try doing it without Him.
Audrey took Talitha to the PCMC this morning to receive a platelet transfusion. Her count was just too dangerously low. (She woke up with a dark red spot in the white of her left eye. The nurse indicated that this was a result of the low platelets; just the normal pressure in the eyes from crying can rupture one or more tiny blood vessels and without enough platelets, excessive bleeding occurs.)
The daily blood draw showed continuing declines in all the counts. Knowing that she is about to "bottom out", they now want to do daily blood draws at the PCMC so that they can know exactly when the exponential jump in blood counts occur and can take her immediately to the procedure room for the stem cell harvesting. So, for the next several days, Audrey will be shuttling Talitha to Salt Lake for blood draws that start at 7:30am.
Pretty much every week requires adjustments and a "new normal". But Audrey wants to know "What is normal, REALLY? And does anyone ever reach it?"
Monday, February 22, 2010
Talitha's white blood count is all the way back down to 200 with the ANC (absolute neutrophil count) at zero. Her platelets have dropped dangerously low and therefore the doctors have asked that we bring her in tomorrow morning for a platelet transfusion.
The mouth is still holding strong with enough drinking and eating still happening and there have been no fevers. (Thank you for your prayers!)
We are giving her double doses of neupogen in the daily shots in her leg to over stimulate the blood count recovery in order to prepare for an abundant harvest of stem cells.
Much to be grateful for even while in the storm.
Sunday, February 21, 2010
Over 10% of Talitha's young life has passed since the discovery of the brain tumor. This means that she has become accustomed to multiple daily medical procedures whether at home in hospitals or in clinics. This doesn't mean she's comfortable with this new reality, nor does it mean she's not unnerved with everyone from parents to doctors coming at her all the time with poky, proddy stuff.
As we laid her on a blanket today to change her bandages we saw her use one of her little coping mechanisms: she said "hi" in her little voice to the nurse. This is her way of engaging the advancing foe to test the waters with the hope that maybe if she's cute enough they'll just smile and leave her alone. When that doesn't work she whimpers to ask for reassurance.
Once Talitha realizes that she has not warded off the intruder, she kicks into a new gear of positive reinforcement both for herself and the offending party. At the slightest pause in the procedure, she invites a conclusion by either clapping her hands or saying "yay!" or both. If not complete she implores the closest kin in the room through sad-eyes or expressions of "hold you" which being interpreted means: "please pick me up and take me as far of way from this as you possibly can."
As a parent it has been really hard to not be able to make everything "all better" all the time and watch her suffer. But, at the same time, it has been rewarding to see her attitude, perseverance, and ability to make the most of a not-so-fun situation (not to mention her trust in us). We're learning all this from a 17.5 month old baby. It is humbling and we are grateful for our little teacher.
Saturday, February 20, 2010
I looked up the word "induction" in a dictionary and found the following among the definitions: "the act of inducing, bringing about, or causing."
Evidently, the induction phase is significantly about priming Talitha's body to hyper-produce stem cells in order to have sufficient harvest to freeze and store for when the "real" cancer fighting takes place during the consolidation phases. (If this is at all confusing to you, I'm right there with you.) The chemotherapy during induction is intended to drop the blood counts so low that the body has to begin serious production of the basic stem cells that grow into either white blood cells, red blood cells, or platelets depending on what the body signals it most needs.
The consolidation series calls for "high-dose chemotherapy" from drugs--different than what she currently is recieving--that are actually intended to completely ablate (kill) all her bone marrow. (And the hope is that it will have just as devastating an effect on the cancer.)
So, it seems the induction phase is all about weakening cells and prepping for stem cell harvest while the consolidation phase is all about killing cells and then rescuing/replacing the good ones.
(I need to ask a whole lot more questions. In a recent letter I read from Dr. Boyer, the Attending Physician in the Blood and Marrow Transplant Program to Tali's oncologist, Dr. Khatua, Assistant Professor of Pediatric Oncology it said among other highly complicated doctor-speak the following: "The parents [that's Audrey and me] asked appropriate questions, and understood the rationale and our plan to proceed with the research protocol." I guess that's his polite way of saying, "the parents drove me crazy with their endless lists of questions but I survived." Poor Dr. Boyer, he hasn't seen anything yet...)
Talitha is getting very tired as we move into the "tough" week. Your prayers mean everything to her and to us. Thank you for enduring with us.
We love you!
Friday, February 19, 2010
- 80% of what people worry will happen doesn't happen.
- Of the 20% that does happen, 80% of it isn't as bad as what people worried it would be.
Because "worry" is an unproductive pastime incapable of changing anything, when we engage in the practice of worrying, we rob ourselves of valuable solution-finding time and resources.
I met a young man today who has a daughter about the same age as Talitha. The nature of the conversation was such that he needed a history of what was happening with Talitha and so I gave him substantial detail very quickly. He clearly was disturbed by what he heard. I can only imagine he was horrified at the thought that such things could happen to someone as young as his baby daughter. (In other words, my story was hitting a little too close to home for him.)
I've done my share of worrying through the years. To date, my parental worrying has not prevented mishaps from colliding with my children no matter how carefully I "knock-on-wood".
While I've not been able to place my children in a protective bubble, I've learned that regardless of the trial, Christ has the power to effectively repair, heal, restore, balance, improve, teach, console, inspire, redeem, provide, and forgive. Trusting in the Lord is a great substitute for worry. Trusting in Him promotes pro-active preparation that doesn't prevent challenge but does provide rapid access to His infinite supply.
So we're trying to learn to trust more and worry less and that helps us avoid some of the overwhelm that tends to lurk along the dark hallways of extended trial.
I hope the pictures posted with today's entry can help clarify that joy is a part of the journey. Between all the Methotrexates and Cisplatins are pocketfulls of smiles, goofy fun, and tight hugs from little arms.
Thursday, February 18, 2010
Tali played and played with Afton and then played and played with Madeline. Home sweet home, indeed!
She ate pretty good today but throws up pretty much anything she eats. Then she's hungry again and eats....(and the process repeats). Cisplatin--the last of the cancer fighting drugs she received before coming home--is a big make-you-throw-up kind of chemo.
The home health care nurse came by this evening and taught Audrey how to use the IV pump so we can give her fluids to keep her hydrated. (She got quite dehydrated after chemo round #1 and we'd like to avoid that this time.)
We won't know what her blood counts are until next Monday because she recently had another blood transfusion and that messes with the actual counts of her body. We assume that if it's anything like last time, her counts will drop to pretty much nothing over the next week to 10 days.
Please pray for Talitha that she might be kept free of infections and viruses. We are so hoping we can keep her at home a little more during the two week recovery period. Also, her ears are doing so well right now but Cisplatin can be hard on them too. Please pray that Tali's ears/hearing might be protected from harm.
Wednesday, February 17, 2010
She is constantly overloading her diapers with pee since they give her continuous fluids through her central line plus she's drinking so much still plus they are giving her a diuretic with the Cisplatin chemo drug so it will flush from her system faster.
She received a litte stuffed animal dog today from a volunteer group that came by and she is LOVING it. She talks to it, kisses it, plays with it...it's her new friend.
The week of chemo is starting to take its toll on her as it's making her more tired. But Audrey was able to get her to play for a good half hour in the playroom on the ICS floor. (She loves stopping at that playroom when she goes on stroller or wagon rides during the day.)
So far her mouth is holding up pretty good and her weight isn't dropping again yet.
It's interesting how life can bring such heartache and such joy. Experiencing the wide spectrum of emotions can enrich our time here on the Earth.
I'm so grateful that God places us here on Earth in families. We didn't know for eight years that the Lord had another child preparing to come join our family. (We also didn't realize that for half those eight years, our now-second-youngest Afton was praying she wouldn't be the youngest forever.) To adequately express our appreciation to God for each of our children including Talitha has so far proved impossible--I've tried again and again. The lessons we've learned, the love we've experienced, the heartaches that have compelled us to draw closer to the Lord, the joy we've felt...it's all worth it!
One of our new trainers at work recently left me a beautiful voice mail after hearing about Talitha. He has a rich and beautiful italian heritage that really honors the place of families in our society. After expressing his sympathies and well wishes for Tali's quick recovery, he shared a saying that his family has honored for many generations: "Senza la famiglia non c'e vita" -- which means..."Without the family, there is no life." I like it!
Tuesday, February 16, 2010
Maybe it has something to do with Talitha being a baby and it's easier to share more openly with others when it's a baby. I mean think about it: when was the last time you heard an older child or adult, in a casual conversation, volunteer basic personal info like their exact height, weight, and head size (with comparison percentiles), and age (down to the month)...not to mention how much and what they ate and drank that day, and if they pooped or not.
There's simply not a blog or a "Pray for Talitha" wrist band for every struggling neighbor, friend, or family member we may come accross that needs help with their often-hidden-but-equally-valid sorrows and pains. Just because their trials may be less public makes them no less deserving of our faith, prayers, and support....if only we could discern their needs or be close enough to them to ask the right questions and care enough to find out so there might be fewer stressed-out souls fighting the good fights alone.
A neighbor and friend of mine is facing his own battle with cancer right now and has been for some time. Still he approached me with such love and compassion and even held back tears as he asked about Talitha and then said, "I wish I could just take away her pain and put it on me. I'd do it it in a heartbeat if I could." Here's someone who is already carrying such a load and really knows exactly what fighting cancer feels like. He loves his wife, children, and grandchildren with all his heart and longs to be with them as long as possible but knows that we never know when it might be our turn so he just faces each day with gratitude and TELLS his family members he loves them and hugs them and holds them close and doesn't leave any of the important things to chance. He'd rather be the one to suffer than think of any of these precious children having to suffer at such a young age. Such Christ-like love and compassion warms me to the core.
Sometimes we may wonder if God really is aware of what's going on in each of our personal lives. The scriptures relate a tender moment when even one of God's prophets wondered this same thing when he wrote, "O God, where art thou? And where is the pavilion that covereth thy hiding place?" The answer he received has often comforted me when storm clouds seem to be especially thick, "Peace be unto thy soul; thine adversity and thine afflictions shall be but a small moment, and ... all these things shall give thee experience, and shall be for thy good."
We can't take the pain and suffering of another person away by putting it upon ourselves. But our Lord and Savior Jesus Christ can and did. I have felt His comforting hand and a peace that is not of this world. Though "we talk of Christ, [and] we rejoice in Christ" I still feel He is the greatest of all the unsung heroes. For as the scriptures say "who can say too much of His great power, and of His mercy, and of His long suffering towards the children of men? I cannot say the smallest part which I feel."
It is Christ that is carrying our sweet Talitha. If I put my mind on the chemotherapy too much, I can lose my grip pretty quick. And somedays it's hard not to get caught up in the "trauma" of the moment especially when you know they are fighting the cancer with substances so toxic it would burn the flesh of her little arms if injected through the smaller veins in the arms rather than through her central port that accesses the largest blood flows of her body near her heart. My faith and trust in God has had to become more than passive and superficial. I've learned He is real and His help is real.
Monday, February 15, 2010
Thanks to all who left anonymous valentines at our door or sent other envelopes with kind surprises. Your kindness and generosity are miraculous and I wish there was a way to share all that is happening even more openly. Your faith, prayers, notes, emails, home-made bread, contributions, phone calls, dinners, help overnight at the hospital....the list just goes on and on. We are forever in your debt and thank the Lord every day for you and pray that you will be blessed and filled with abundance from Him.
Talitha continues to be in good spirits. The chemo pounding is starting to take its toll little by little again and Tali did receive another blood transfusion today to strengthen her. I just have to rely on the Lord because when I think too much about what her little body is going through, it just doesn't process in my little brain. I know it should go without saying that God is stronger than cancer and chemo but sometimes it really helps to think about that and remember that with God, all things are possible. (ALL things are possible.)
Sunday, February 14, 2010
Saturday, February 13, 2010
But she's a regular little cheerleader with her little "yay" after ever single cotton-picken thing they do to her. It definitely keeps everyone smiling and reminds me of the scripture that says we shouted for joy at the prospect of coming to Earth to have this experience.
And if all things really will be for our good and give us experience, why not get into it a little more and give a "yay" a little more often. Talitha seems to understand at an early age that challenges can be a part of daily living; and while it's not comfortable, you don't have to be grumpy about it. In fact, a little verbal, positive reinforcement--even if it's self-supplied--after getting through each tough moment can go a long way in keeping up a positive attitude along the way.
So, I'm going to give it a try.
Yay! We made it through day 2 of this cycle. :-)
It really was a great day for Tali. She's still eating and drinking great. They're more than a little surprised that after 24 hours her Methotrexate is already down to a 4 (It was 17+ after the first 24 hours in cycle 1). Talitha is laughing, full of energy, and enthusiastic about life except when she's tired. But she got some good sleep today after a hard night so she's in good spirits. (Oh, they also found a special cream for her bottom that has made the rash from the methotrexate go away and now she doesn't cry from pain when her diaper is being changed!)
I am SO grateful.
Your prayers and encouragement have worked wonders. THANK YOU!
Friday, February 12, 2010
We also found out the results of the kidney test she had last week...106!! A week before each chemo treatment she gets to have this test to make sure she's on track. The first test she took her points were in the 80's range--she has to be above 60 to be "eligible" for chemo. A whopping 106?? We were stunned. Just about as stunned to hear of her jumping from 100 to 5,000 in 3 days on the ANC reading. Thanks to lots of prayer, miracles are happening.
Checking-in today was quite the experience. We were taken to a place "no one has ever gone before." Every single room is being used right now. Everything on every floor is booked solid. Even with a few children leaving today, more came in than left. So, there was no room for us at the ICS unit. We are now currently staying in a room used for sedation, where they prep children before surgery, it's just around the corner from the ICS unit. It is such a new thing that we literally have been helping with organizing the room so that we can fit a parent sleeper/chair in there (thanks to William's space planning skills) and there are nurses who are coming around to see what it looks like. We are one of 3 "fortunate" families in this section.
When we first arrived and they showed us to this most humble room, I must admit I was rather shocked. No window? No TV? No closet? No private bathroom? Shocking. Would room service find us with Tali's dinner?
That's when it hit us how lucky we are. How lucky to live in this country, to have a beautiful facility to take our child to. In Haiti you can forget windows and everything else, just give them a place with a roof over their heads. Makes you wonder doesn't it?
I wonder if I'm making enough room for the important things. Making room for those things that bring lasting joy.
Thursday, February 11, 2010
White Blood Cells (WBC) = 9,700 (this was down at 900 on Monday)
Absolute Neutrophil Count (ANC) = 5,000 (this was only 100 on Monday and needed to get to 1,000)
Hematocrit (red blood cell measurement)=25.6 (this is still relatively low, barely above the 25 minimum required to resume chemo treatment)
Platelets=265 (more than 2.5 times higher than the 100 minimum required to resume treatment)
I don't remember the last time I heard such great news that made me feel such a tinge of disappointment. Talitha is as close to being herself again as we remember since her emergency operation on Christmas Eve. Kind of makes me swallow hard to think we have to go in with the wrecking ball again so soon. Getting the head and the heart onto the same page can be a hard deal.
We're so grateful to have had a full week with Talitha at home. She has filled our home with love and inspired us to do a little better and reach a little higher. I've even noticed a bit more patience between family members. It's been a joyful last few days. (It's been harder to take days for granted lately.)
Thank you for your tremendous support through round #1 and recovery.
Please send a huge thank you up to heaven. Your prayers on behalf of Talitha were most definitely and graciously answered in so many favorable, tender ways. Oh if we could all find the words now to say "thank you!".
Wednesday, February 10, 2010
Tuesday, February 9, 2010
"If you can meet with triumph and disaster
And treat those two imposters just the same;"
Life has a way of whipsawing us between false extremes that get us feeling artificially up or down. Giving too much heed to either can invite extreme ease or extreme tenseness--both debilitating conditions in their own right.
I've certainly felt shaken like a rag doll as I've tried to get my bearings with what's happening to Talitha. We're learning to take in information as it comes without the knee jerk reaction to slant it as either good or bad. When we do, we notice our capacity is enlarged and the information received can be utilized to make better decisions from a larger set of data points. (When we don't, fear leads to shock which interferes with the ability to think and make decisions.)
A dear friend of ours "coincidently" sent an email tonight with a great example of what I'm feeling and seeing as we watch Talitha's story unfold:
"There was once a wise Chinese man who had one son, one horse, and one acre of ground on which he made his living. One day his son went out to feed the horse and left the gate open and the horse ran away. All of the man's friends and neighbors came to him and said, 'Oh that's too bad. You've lost your only horse. How will you make your living?' The wise Chinese man just said 'I don't know if that's bad or that's good.' But they insisted it was bad.
"A few days later, the horse got thirsty and came back to the corral bringing 9 other wild horses with him. Now all his friends came over and said 'Oh, isn't that good. You've got 10 horses.' The wise Chinese man said 'I don't know if that's bad or good.' And they insisted it was good.
"A few days later, the wise Chinese man's son went out to break one of the wild horses. In the process, the horse reared up and came down, severely breaking the son's leg. This time all the neighbors came over and said 'Oh, that's too bad. That's your only son. What will you do?' And again the wise Chinese man said 'I don't know if that's bad or good.' And they insisted it was bad.
"A short time later, war broke out in the country. The government came through and gathered up all the able-bodied young men and marched them off to war where they were all killed.
"This story can go on and on. This story belongs to all of us. It's our story too...It's important to reserve judgement and trust in the Lord and His plan."
We can certainly see that with Talitha's story. There's more than enough drama to have you up and down and all over the place...all the time. The important thing is we are seeing the Lord's hand and that is helping us to be more calm and keep moving forward with faith.
Monday, February 8, 2010
Wikipedia explains that "absolute neutrophil count (ANC) is a measure of the number of neutrophil granulocytes present in the blood. Neutrophils are a type of white blood cell that fights against infection.
"A normal ANC is above 1,500 cells per microliter. An ANC less than 500...is defined as neutropenia and significantly increases the risk of infection [Talitha is at 100]. Neutropenia is the condition of a low ANC, and the most common condition where an ANC would be measured is in the setting of chemotherapy for cancer."
So by definition, Talitha has sever neutropenia right now (i.e. ANC below 500). Mild neutropenia exists between 500 and 1,000. Once the ANC hits 1,000 or above, the risk of infection is considered low and chemotherapy can re-commence.
The daily neupogen shots will continue through at least Wednesday at which point we will hold off temorarily pending the blood draw results on Thursday. (There must be a minimum of 48 hours between the last neupogen shot and when chemotherapy is administered.) If Thursday's reading shows an ANC of at least 1,000, then Talitha will likely be admitted to the PCMC on Friday to start round 2.
Once again I'm reminded of the old saying, "It's what you learn after you think you know it all that really counts."
Sunday, February 7, 2010
What will be different this time? Will the lessons be deeper just like when you re-read something worthwhile? Will we be as willing to press on as when we were more naive about the terrain? Will we be stronger since we've already "done it" once? Will it be harder to keep holding on or will our grasp be strengthened from the exercise?
Talitha is doing SO good! (in everything but drinking) The home health care nurse will come tomorrow to do a determining blood draw. We are confident her blood counts will be more than sufficient to allow for advancing to cycle #2.
So, we must press on with the fight.
Saturday, February 6, 2010
Friday, February 5, 2010
The thing I noticed most today was her eating quite a bit more; enough so that we only fed her through the tube twice today. The tube feeding process at home is a bit different than at the hospital. We don’t have the fancy machines at home that regulate the flow. We just have to raise her feeding line up and then insert the tip of an oversized, open syringe into the feeding tube end and then pour the food liquids into the syringe and let gravity do its work. (Before feeding her through the tube, we have to listen through a stethoscope to her stomach while forcing air from a smaller syringe into the line to make sure the line is still in her stomach and not wandering off to other places in the body--like the lungs--that shouldn’t be fed that way.)
It’s getting better each time but Talitha can immediately feel the substance flowing to her stomach and so will complain and be very uncomfortable. He stomach shrunk quite a bit over the last week and it doesn’t take much for her to feel the stretch down there. It’s interesting to note that the more she went without food, the more she began losing the ability to receive food. In order to get her the nourishment she needs, we are having to stretch her receiving capacity—the stomach. And that makes her uncomfortable.
It's no secret that both our spirits and our bodies need nourishment to survive and thrive. Hunger can be very real to both. Cravings are common to both. Neglect of either brings a reduction in capacity and the eventual side effects of starvation. Overcoming malnourishment from under-consumption in either case usually involves an uncomfortable stretch or adjustment.
We’re trying to help Talitha stretch her stomach back to where she can receive all the physical nourishment she needs. We also sing with her, involve her with the daily family scripture reading when she’s home, and pray with her so that we aren’t neglecting the spiritual feeding and strengthening so vital for facing life’s challenges of any kind.
I’ve noticed with my older children that healthy appetites are built both spiritually and physically not by huge intakes just one day a week followed by days of nothing, but by smaller, adequate amounts consumed consistently and increased steadily over time.
Thursday, February 4, 2010
Up: white blood cell count is up to 500 (Tali gets to go home!)
Down: Tali's central line broke.
Up: They were able to repair the line.
Down: before they repaired it, they had to insert a new IV line in Talitha's arm for the antibiotics.
Up: They needed the separate IV line anyway for the follow-up kidney test.
Down: The repaired central lines both clogged (Tali has to stay at the hospital.)
Up: After 4 hours of painstaking effort, they unclogged the central line (Tali got to come home!)
Down: Tali cried for a good chunk of the way home and since Audrey was alone with her and driving, she couldn't do anything about it...except enthusiastically sing and recite the story of Goldilocks and the 3 bears all while pretending she wasn't completely annoyed by the rush-hour traffic that helped ensure the trip would stretch out even longer.
Up: Talitha's home!
Down: She only eats a little and won't drink
Up: She's home!
Down: The home-help nurse came really late tonight and we had to keep Talitha up so the nurse could teach us how to inject the on-going antibiotics and how to feed Talitha through her nose-to-stomach tube.
Up: Talitha is home and sleeping in her own bed!
It's tough to maintain credibility and trust with someone so small when you are constantly hyping her up to be brave "one more time" and then there's one more unexpected thing after another. And when the central line is broken or clogged they have to do painful pokes for the standard blood draws...just one more thing we aren't well equiped to explain to our 17 month old.
So the question is, do you just assume the worst or do you keep hoping for the best amidst the piling on of unplanned hospital days and not knowing what's coming next?
Maybe the answer is to just "... keep your arms and legs inside at all times and enjoy the ride!"
Wednesday, February 3, 2010
Talitha is trying to eat a little each day but it's not keeping pace so the feeding tube gets to stay around for a while yet.
Encouragingly, Talitha's white blood cell count (finally) showed an increase in this morning's blood draw. If the increase continues tomorrow morning they say chances are good Talitha will come home for a few days.
The count this morning was 200; when it gets back up to 1,000 she gets to start the whole process over again for induction cycle #2. For the sake of perspective, when she left the hospital on January 24th after a week of chemotherapy, her count was at 2,700; the low end of the "normal" spectrum for white blood cell count in a child is 6,000.
It seems harsh to hit her with the chemo guns again so soon, but if they don't, it gives the bad guys (cancer cells) time to regroup and dig in with greater resistance. You kind of have to keep the bad guys on the run and confused or they wise up and figure out new ways to get you.
In many ways it's like fighting evil. If the evil can find a way to work its way into your life without you seeing it for what it really is, it can wreak havoc on you. But identification is only the first step. Once you see it for what it is, you have a choice: (1) ignore it and pretend it's not there cause it doesn't seem so bad and nothing's really that wrong, or (2) aggressively fight it till it's gone...REALLY gone. (And that takes time and sometimes it's a repetative process that can hurt.)
We've had to face the harsh reality that even one un-killed cancer cell left over after Talitha's treatment spells disaster. That's why the oncologists aren't messing around.
I'm starting to see a spiritual corollary...and I pray for help to understand and apply it.
Tuesday, February 2, 2010
Talitha has lost enough weight since last Thursday that they inserted a feeding tube early this evening. Not exactly what I was hoping for (and I'm not even the one gagging on it going down).
Angels make it possible to endure when tediousness sets in. Among the many things I've been invited to reconsider since December 23 is the notion that angels primarily come to our aid from the other side of the veil that separates heaven and earth. I believe now that my ratios may have been lopsided in the wrong direction as I'm seeing an inordinate amount of angel activity all around us physically. From dinners showing up as if someone knew exactly what night it was needed to emails of encouragement with precise course material with answers to help with the test(s) of the day...I'm starting to see why prophets of old would say things like "all things denote there is a God."
You angels have such ordinary names, faces, homes, and dress, who'd have guessed. No wings, harps, or cloud hopping...just kind, caring, spirit-heeding normal people trying to keep up with your own challenges and cares but somehow never too busy to lift the hands that may be a bit droopy whether in your immediate geographic or wider virtual proximity.
You angels are the heaven-sent white blood cells of my faith that boost my immunity against the diseases of discouragement, loneliness, anger, and despair. How I pray God's choicest blessings will be with you to uphold you and your loved ones that you too may have an abundance of His spirit to lift and guide you always.
Monday, February 1, 2010
Then there's the times they rearrange the words they've heard Audrey or me say. Sometimes the misquotes are cute and funny. Sometimes they're profound.
On one occasion, my daughter Afton was trying to repeat the common saying that "when life hands you lemons, make lemonade." Only what came out of her mouth was "you can't make lemonade without lemons."
Audrey and I have often reflected on that. It helps us smile and relax just a bit more when the going is rough. No matter what the trial is, the common thread seems to be that if we can somehow keep our wits about us we'll often notice that some of the greatest learning, growth, and breakthroughs in our development happen as a result of the tough stuff.
The trick is trusting that that will be the case even before the batch of lemonade is finished. Then you can face the prospects of the situation with a bit more enthusiasm and a lot less dread.
I heard something tonight that seems to apply: "feeding your faith will starve your fear."
I like that.
We actually got a sip of lemonade today. Talitha had her second sedated hearing test and the results actually IMPROVED over her first test. (Boy, was I relieved and excited.) Her first test showed a problem with the low sound registry and little to no movement of the eardrums. Now, the fluid that was restricting the eardrum movement has begun to dissapate and her low sound receivers are working again. But of most interest--since the chemo she's receiving can impact her mid to high note receptors--Talitha's mid to high range is still in place and has not been diminished from the first induction round!
Thank you--multiplied a thousand times--for your prayers and faith on Tali's behalf. The results of your prayers really are tangible. I hope you are feeling joy. We are.
My prayer is that God will grant each of you great peace and happiness and that he will multiply your joy. What a blessing to know He lives and loves each one of us.