Monday, June 27, 2011

Life is kind of a piece of cake right now. The calm before the next storm. I'm going to enjoy it while it lasts. Will update as non-normal begins again.

Church


The big news of the day is Clara and I went to church today (just Sacrament Meeting)! Before church we went to the hospital. On Saturday they said I could bring her in on the days she needed the shots so they could help hold her down while I did the injection. Even though I wish I didn't have to do it, it helps to do it in the hospital with help. Anyway after the dreaded deed was done and she was calmed down and we headed to the elevator, I said "Mommy's sorry she has to give you the poke, but the medicine will help you to feel better." Clara's simple, "Thanks, mom" was heartbreaking and soothing at the same time. She knows. A tender mercy.

It's been way too long since I've been to church and it was rejuvenating for my mind and spirit. Today was a blessing and I hope we have many more Sundays just like today. He hears and answers prayers. Seeing where Clara is today and where she was 5 weeks ago, there is no doubt. All things are possible through Christ.  

Behold, I say unto you that whoso believeth in Christ, doubting nothing, whatsoever he shall ask the Father in the name of Christ it shall be granted him; and this promise is unto all, even unto the ends of the earth.                                                                                                                   Mormon 9:21

Friday, June 24, 2011

We've moved to a new home away from home. A basement apartment really close to the hospital. It's perfect. Tonight we had a real dinner together and I did a couple of loads of laundry. Brian and I are thankful for the gracious family letting us use their space as our own while we are here.

As much as I didn't want to leave the hospital and take on the responsibilities that come with it, a homey environment is doing wonders for Clara and I. Hopefully we can make it two weeks before Clara is actually inpatient at the hospital. The downside is that today I had to give her the neupogen shot. I stayed pretty composed, but broke down after I finished. And then the home health nurse cried right along with me. I hate that I have to do the injections, it's horrible.

We are so thankful that Clara is happier and health-ier than she was just a month ago. Our Father in Heaven hears and answers our prayers and Clara is a testament to that. We have great hope for Clara's future.  We are thankful for all who have united with us in faith and prayers for Clara.

Brian's portion:  There are a few quotes from famous writers that I am often reminded of during the past month.  1.  It was the best of times, it was the worst of times.  And 2.  These are the times that try mens' souls.  I feel blessed to be able to see light during such a trying time.  Clara's illness is making us stronger as a family - the other children are all learning to lean on one another, and we as parents are more selective in our daily activities to ensure that our time is used wisely, and used together.  In our church we are fortunate to be led by men and women who are inspired by God.  I am continually awed by their ability to know our needs and to know precisely what we need to do in our lives to find peace and joy.  President Dieter F. Uchtdorf said:
Our second key relationship is with our families. Since “no other success can compensate for failure” 12 here, we must place high priority on our families. We build deep and loving family relationships by doing simple things together, like family dinner and family home evening and by just having fun together. In family relationships love is really spelled t-i-m-e,time. Taking time for each other is the key for harmony at home. We talk with, rather than about, each other. We learn from each other, and we appreciate our differences as well as our commonalities. We establish a divine bond with each other as we approach God together through family prayer, gospel study, and Sunday worship.
I've known this for all of my life.  But I haven't really known it.  It never became a part of me until Clara's diagnosis.  For as long as we've been a family, we've played together and we've prayed together, though sometimes it has felt like we were going through the motions.  Perhaps it's easier now that school is out, but each afternoon I look forward to getting home so I can spend time with my children, swimming, riding bikes, reading books, playing games, watching cartoons.  Though quiet reading/study time in the mornings has always been almost sacred to me, I anxiously await the first child to come rumbling down the stairs every day.  So many other things have been put aside as we unitedly focus on our family.  It is liberating.

Thursday, June 23, 2011

33 days


First night in 33 days she's slept out of the hospital. I'm going to call it what it is. A miracle. Clara is well enough at the moment to be OUT! I'll admit I was dragging my feet a little, okay a lot, to leave the safety net of the hospital I had come to feel comfortable in. But, it is wonderful to be here at my aunt's and not have the beeping and interruptions. I think it will do her body good to be free for a bit. Mine too. Thank you for all your prayers that got us here. xoxo

Wednesday, June 22, 2011

Sunny day in the hospital

This morning after Clara's radiation, the mail came. Our very favorite time of day. Thank you for sending so many fun things our way. Everything is so appreciated. I hope that you can feel the love we have for all of you as you give so much of your hearts to us. Thank you just doesn't seem to do it. We are learning so much from the generosity of friends, family and new friends. And the thoughts and prayers sent heavenward for Clara and our family are undoubtedly the reason we have the strength to carry on. 
Thank you.


This dress came in a package for Clara today. I suggested that we change her into the dress and she emphatically said, "No, Kate wear it." She has a very keen eye for things that Kate likes. Well, with some coaxing I got her to put it on and she traipsed through the halls showing it off.

It was so beautiful outside today, finally some summer weather! We went out on the terrace and I sat down on the little bench and was enjoying the sun's rays. Clara resumed her favored position at the railing by the window. Elbows, on the rail and hands up on her cheeks. She loves to look down below at the park and see the swings and slide at the playground. Cutest thing ever. How can I not take a picture every single time?!

Tomorrow is her last radiation treatment. The plan is to discharge her tomorrow, but that will all depend on how she is doing. Her counts are pretty low right now so we shall see if it happens. The home health came by today and trained me on flushing her Hickman line and giving the neupogen injections. I knew I should have been a nurse!

Here are my summer lovin' kids back at home tonight before bed. I miss those days at the pool. And I miss having us all together all the time. I vow to never take for granted normalcy ever again. Each day is a gift, trite and cliche? Maybe. But, we will be stronger as a family because of this and are learning lessons to take us into eternity, together.


Not one of the trials and tribulations we face is beyond our limits, because we have access to help from the Lord. We can do all things through Christ, who strengthens us.

Tuesday, June 21, 2011

happy day

The happy crew on Saturday. The first time Clara has been able to walk when they've come to visit.
Clara talks non-stop about these brothers and sister of hers. Her main conversation starters are: "Kate at my house," "Kate at ballet," over and over again. She clearly misses them. Yet somehow she seems content to be away from home, like she knows that she's suppose to be in the hospital getting better. 
Late this afternoon she woke up from her nap uncomfortable and in a lot of pain. Her nurse brought the pain medicine and I gave it to her in all her fury. About 15 minutes later she calmed down and said to me, "Thanks mom for medicine. Feel better." It's amazing what she comprehends. She is an angel. 
She is now unhooked during the day and will continue to get her fluids through the night. It is liberating for her to be able to move for hours at a time free from the pole. She had a great time delivering some thank-you gifts kind friends have sent for her to hand out to nurses and doctors. She loved it! (Thank you Makala and Joann.) 
One of her very favorite people is Tom, the janitor. She's always wondering where he is, wants to track him down and gets frustrated if he passes by without saying hello. She loves her nurses too. I overheard a nurse telling another today that Clara brings brightness to the floor. I would have to agree. Her sour moods are quickly overshadowed by cuteness and happiness. It makes their job more pleasant as well as mine.
And will we be discharged tomorrow? That is a good question. I still have no idea. We'll just keep doing what we're doing and it will all work out. It always does. I'm learning this more and more each day. I'm not in control and that is a good thing. If I were I would surely be depriving myself of opportunities to grow and learn through experiences such as the last 4 weeks. Submitting to the will of the Lord in all things and having faith in His ability to comfort and guide through all things is the only way to find joy and happiness in the storms of life.  

Monday, June 20, 2011

so tired

This month in the hospital has caught up to me, I am so tired today. 
Quick update and then I'm going to join Clara in dreamland.

I suggested to the doctor that we change up her oral pain med times to 8am and 8pm instead of 12am, 8am, 4pm. It is a bit selfish on my part I guess. I won't miss waking her up at midnight to squirt medicine down her throat. Not very enjoyable for her either. I'm hoping this new routine will be okay for her.

She is tolerating the radiation well and Thursday may be her last treatment for now. The radiation oncologist explained how he was going to determine if she'd had enough, but it went right over my head.

There was talk about discharging her on Wednesday. Not for "home-home" but near the hospital "home". We have to stay local. And yes, that stinks. No way around it. Gearing myself up for playing nurse. Shots, dressing changes, IV flushes etc. will be my responsibility. Nevertheless, this is the week her counts will start to plummet so we will see if she escapes fevers and infections that would keep us in here. Hopefully she can escape it all. I think we would both enjoy a change of scenery for a few days. Even though there will be a lot of back and forth for labs and tests. 

I think Clara has been tired today too, she hasn't been quite herself. Maybe feeling a little lackluster after her escapade out of the hospital yesterday. She begged me to go in the "blue car" quite a bit today. 

Tomorrow's a new day and that is the joy of going to sleep. A new beginning in the morning.  

Sunday, June 19, 2011

The Bittersweetest of Father's Days

Today was both awesome and almost impossible.

Clara had a great day! She rode all over the hospital in her little pink car, looked out the windows from the top floor, watched the fish being fed at the aquarium, had goldfish crackers and Hershey's kisses for lunch and spent the afternoon on leave OUTSIDE OF THE HOSPITAL for the first time in 4 weeks. Natasha and I were so excited we couldn't decide what to do, finally settling on taking Clara to my cousin Nicole's house for a few hours. Nicole and her girls have been to the hospital to visit Clara a number of times and Clara loves little girls (sorry, 15 yr old Elyse! In Clara's eye's your still a little girl, kinda). We could only stay for a few hours, but Clara was in heaven and wore herself out. To Nicole, Cody and kids THANK YOU, from the bottom of our hearts.

Clara was not happy to learn we were going back to the hospital. As I pulled into the parking garage, she repeated, "no, daddy." Natasha had to console her in the suite by rocking her and singing to her, as she did not want to get back into her hospital bed.

Finally, when it came time for me to return home, that little girl broke my heart. As I told her that I needed to go, she stuck out her bottom lip, and tried to hold back the tears - she did a better job than I. She wouldn't look at me and I could tell she was both confused and hurt. As sad and difficult as it was to leave, moments like that make fatherhood divine. The same scene will be repeated dozens of times over the next year, and I hope the familiarity of the experience does not dull the emotion of parting.

To all fathers, keep it up! I love this job.

Friday, June 17, 2011

A good day


My girl Clara had a super day today. They had to wake us both up this morning to go down for her radiation. A billion times better than yesterday! She was done and back in her room by 11:00 am. They totally unhooked her from everything to see how she would do. And I am so happy to report she did awesome. She RAN around, visited the nurses with her charm and as you see, spent some time in a contemplative state looking out the window. We took a nap and then counted down till Brian, Carson and Chandler arrived. She was tube free until 5:00 pm. Very liberating for both of us! It is so good to see her resuming a somewhat normal life. We are both enjoying it because the roller coaster does fall again every couple of weeks from here on out as is the nature of the beast. Carpe diem! Word on the floor is she might be able to go outside for a bit tomorrow to the nearby park. Fingers crossed…a simple pleasure not to be taken for granted.

You must know that the highlight of our day is the surprises that come in the mail every day. Pictures, blankets, boredom busters, treats, notes, emails, meals, calls, visits, the list can go on and on. As a family we thank you! They brighten our days, make the load easier to bear and we feel your love and concern through your prayers. Thank you so very much. Your compassion is inspiring. I have learned much from so many of you. Enjoy your Father's Day weekend!

Back at the Ranch







While mom and Clara have been in Spokane, the boys have been doing the following:

Resting in between basketball games in the mountains

Posing for pictures by the river during the fathers and sons campout

Goofing for pictures at the fathers and sons campout.

Playing nice with friends in the mountains

Fashionably hiking trails in brand-new WalMart shoes.

Side note - our new fathers and sons tradition includes going to WalMart on our way out of town to buy a cheap pair of shoes that may or may not make it home in one piece.

Kicking home runs


Scoring sweet hats at Cub Scout day camp. Some kids are too cool for cowboys hats :)

These children of ours are remarkably resilient. Much more so than mom and dad. I'm leaving to take the oldest 2 up to Spokane to see Clara and Mom in about 10 minutes.

Thursday, June 16, 2011

Picture post

Today started out horribly. By 3 o'clock things started to look up.
darling hats delivered
visitors
3 wishes granted a PINK cozy coupe & a radio flyer wagon (thank you!)
and lots of smiles and giggles










Tomorrow should be much better, she will go for radiation starving at 8:45 am instead of 12:45 pm like it was today. Pray for exactness in radiation :)

Wednesday, June 15, 2011

If only glasses would fix the eye problems. . .
Since they won't do the trick, the doctors have decided to start radiation. 
A higher dose than before and between 6-8 treatments.
Radiation by day, Chemo by night
Not exactly a normal two year olds schedule.
I wish I could do it all for her. 
She really is doing so well.

Tuesday, June 14, 2011

The Star

This girl has been asleep since 5:30 this evening as a result of a napless day. So the question that remains to be answered is this: Is she down for the night, or is this a nap? 
It is 8:18 pm and they should be getting her chemo started any minute now (at least I hope). Her oncologist was conferencing with doctors in Seattle today regarding her case. They agreed that surgery and more radiation wouldn't be wise at this point. The only viable option is to start chemo. Her left eye started turning in this afternoon just like I saw the right eye starting to do several days ago. I took her to the ophthalmologist after first seeing it and she checked out fine for now. The vision is still there. So we just need to hope that the tumor will start to shrink quickly!

Clara was singing one of her favorite songs to me today. I was enjoying the moment too much to get it on video. I'll get it one of these days.

I am like a star shining brightly,
Smiling for the whole world to see.
I can do and say happy things each day,
For I know Heav’nly Father loves me.

It's perfect, I think it should be her theme song. She is a star. 

Monday, June 13, 2011

Pressing forward

It's like she just realized at that moment her hair was gone.


Clara had an MRI this morning. Finally, this evening her doctors came by to visit about the results. It is still unchanged since the MRI last week. What we know is she has lost the vision in her right eye; may be temporary, may be permanent. The tumor is intertwined around her optical nerve and is compressing more on her right eye nerve than her left eye. In an effort to stop more internal growth within that tumor (which may explain the loss of vision all of a sudden) they are going to start chemotherapy tomorrow instead of Friday. Surgery and radiation they believe would be too risky at this point. The HOPE is that the tumor will shrink and relieve pressure that her vision will return and lessen the risk of the left eye also being affected. And so tonight the good doctor will study up and determine which chemotherapy drugs to start her on tomorrow as different combos may be more effective. 


We are taking this all in stride and are anxious to start chemo tomorrow. We know that her body has been responding well to the chemo thus far based on her pain level and the routine tests that indicate a lower rate than when we first got here 3 weeks ago. Why the cancer/tumor in her head region hasn't responded is a good question and a bit baffling to the professionals. I'm beginning to realize that with the ups and downs we are experiencing this year, or whatever it ends up being--- time is going to go very quickly! 


Clara is such a good little patient and I am so proud of her. She is enduring so much and it doesn't seem to phase her. I'm drawing much strength from her. It is impossible to be down when she's so upbeat, happy and gracious (except of course when the pain isn't under control).    


I am so grateful, more than I can convey that Brian and I are blessed to have supportive parents who have been willing to step in and help to run the house while I am away. For me that is one of the hardest things to be away from home, not doing the things mothers do day in and day out. You almost don't realize how much you'd miss it till you can't do it anymore. I try not to worry, but it is a natural instinct I think. My kids are lucky to have BOTH sets of grandparents to look after and care for them and assist their dad. And Brian and I are lucky. So lucky to have them. 


This scripture has been in my mind constantly. I believe it encompasses what I need to do every day and really the perfect prescription for enduring any trial we experience in life. 

Wherefore, ye must press forward with a steadfastness in Christ, having a perfect brightness of hope, and a love of God and of all men. Wherefore, if ye shall press forward, feasting upon the word of Christ, and endure to the end, behold, thus saith the Father: Ye shall have eternal life. 

Grandparents Woodward served as proxy parents and took Kate to her ballet recital on Friday.
Her first one, I missed it :(

Saturday, June 11, 2011

Regrets?

I can't sleep, so I'm up late with a need to put some thoughts down. Earlier Natasha mentioned how grateful we are that we don't have any regrets about spending time with our children. I've thought about that a lot for the past few weeks. While I don't have regrets about quality and quantity time spent with our children, I have one nagging regret that will change my life for the better.

When I was in grad school at Notre Dame, Natasha and I were both pretty young. Chandler was 16 months old when I started and Carson was born during mid-terms of my first semester. When my first year was almost complete, we moved into The Village - the ominous-sounding married student housing at ND. We quickly became acquainted with dozens of other couples who shared our situation - young family, struggling to find home/school balance, excited for what the future held beyond the borders of South Bend. The apartments were tiny (450 square feet), but so was the rent ($350 per month). It wasn't heaven, but we felt at home and loved the communal playground, when it wasn't covered in snow or too hot and humid to breathe outside.

In one of the neighboring apartments there was a young family (law student) with a special trial unfolding right in front of us. They had a young daughter who had a brain tumor. Betsey was the sweetest little girl. Natasha will likely correct me on this, but I believe she was just about Chandler's age. Betsey spent many months in radiation and chemotherapy and slept in a hospital bed in our little apartment complex when she wasn't in Indianapolis receiving more treatment for the devastating cancer that was destroying her body.

Now to get to the crux of this post. We lived in the same apartment complex with Betsey and her family for over a year (minus the summer when we were gone for an internship) and I didn't do enough to ease their burden or offer comfort. Chandler and I went to the hospital to play with Betsey for a few hours one day and we would occasionally play with her outside, helping her on the slide, but in hindsight, my total effort was meaningless. Never once did I put my arm around her father and ask if there was anything I could do, or express my sympathy at their plight. Betsey died not long after we graduated and moved away, disappearing from my memory until a few weeks ago.

I had a wealth of excuses for why I couldn't/didn't do much of anything for Betsey and her family. I could probably fill a whole notebook page. But none of that matters. In the eyes of those who suffer and in the eyes of the Lord, action is everything, intention is foolishness.

During Clara's hospitalization, we have been blessed by so many people in so many different ways. The smallest gesture means the world to us, and especially to Clara. Even those who don't really know what to say or what to do provide so much comfort and strength just by praying for Clara and our family. In my personal life, it's time for a change. We have been shown so much compassion and kindness for the past month, I would have to be a complete fool not to learn something from this.

During last October's General Conference of our church, President Henry B. Eyring related the following personal story:

We need not worry about knowing the right thing to say or do when we get there. The love of God and the Holy Spirit may be enough. When I was a young man I feared that I would not know what to do or to say to people in great need.

Once I was at the hospital bedside of my father as he seemed near death. I heard a commotion among the nurses in the hallway. Suddenly, President Spencer W. Kimball walked into the room and sat in a chair on the opposite side of the bed from me. I thought to myself, “Now here is my chance to watch and listen to a master at going to those in pain and suffering.”

President Kimball said a few words of greeting, asked my father if he had received a priesthood blessing, and then, when Dad said that he had, the prophet sat back in his chair.

I waited for a demonstration of the comforting skills I felt I lacked and so much needed. After perhaps five minutes of watching the two of them simply smiling silently at each other, I saw President Kimball rise and say, “Henry, I think I’ll go before we tire you.”

I thought I had missed the lesson, but it came later. In a quiet moment with Dad after he recovered enough to go home, our conversation turned to the visit by President Kimball. Dad said quietly, “Of all the visits I had, that visit I had from him lifted my spirits the most.”

President Kimball didn’t speak many words of comfort, at least that I could hear, but he went with the Spirit of the Lord as his companion to give the comfort. I realize now that he was demonstrating the lesson President Monson taught: “How does one magnify a calling? Simply by performing the service that pertains to it.”




Clara was up and around A LOT today! Her cousin Vivian came for a much needed play date and for a hospital bound 2 year old, it was a great distraction. As we said goodbye to our Saturday afternoon visitors she wanted to hop on the elevator with them. So sad. To distract her from pleading to go with them, we grabbed a shopping cart from the playroom and walked clear down to the butterfly hall. On the way back she stopped and said, "can't go mommy." I picked Clara and the shopping cart up and pushed the IV pole (which I've dubbed as my 6th child) back to our room. She knows her limits. Her blood counts started to climb back up today so she should start having more energy this week. . . just in time to knock them back down again when chemo starts on Friday. I'll have to make sure we spend as little time as possible in the room this week and maybe take her outside in the gardens for some fresh air if they'll let me. Her doctor is decreasing the morphine drip today and we will gradually transition to an oral pain med as needed. A big step. This will help to determine how well the cancer is responding to chemo.

Big, big thank you for all of the gifts, cards and pictures you have sent. Everything puts an instant smile on her face, mine too! Hospital life can get a little dull so thank you for brightening up our days here. We are grateful for each of your thoughts and prayers. Thank you, thank you, thank you!

And in case you haven't seen the video of Clara singing "I am a Child of God" in two year old language here you go!
    

Friday, June 10, 2011

Life is Beautiful

2 years

2 months














I had a bit of a flashback when I took a good look at Clara after I gave her "the haircut" today. Same cheeks, same eyes, same sweetheart lips and now the same hair-do as that little baby two years ago. She didn't mind that her golden "locks" were being snipped and buzzed. In fact it should be no surprise she said, "thank you mommy" when I was all done. She looks like an official cancer patient now, don't you think? Ready to fight this cancer!


Brian and I were discussing last night on the phone what we felt is the most difficult part about blogging daily. It's definitely not the lack of "material" rather hundreds of thoughts that we want to share and having a hard time deciding on what to share. I suppose it is a good thing we potentially have hundreds of days left!


Today my mom and I were remembering back to that early morning conversation with the ER doctor nearly 3 weeks ago when he diagnosed Clara with neuroblastoma. She commented it appeared the doctor was rather surprised at how composed I remained. Sure as news settled there were overwhelming tears of uncertainty. But, I also had overwhelming feelings of peace and comfort that have continued with me day after day. Just as Jesus Christ knows our pains of the flesh he knows our heartaches. He carries my burdens as I come unto Him. I know there is no other way, but to seek Him who knows us and loves us. 


Clara's hair will grow back, we won't always live in this hospital, we will soon return to our old "normal" life and our own "Sunday will come." No doubt about it. Life is beautiful.



Thursday, June 9, 2011

Daddy's perspective

When I was a young teenager, we had a Sunday School lesson where I first heard the phrase "you can't see the forest for the trees." I remember our somewhat rowdy group of about 8 boys and 3 girls looking at the teacher like she was from Mars. That statement just did not make any sense to our adolescent minds. A few weeks later, the other boys and I were on a backpacking trip in the forested mountains of north central Washington and I thought I finally understood what the phrase meant - sometimes you can't see the whole forest because the trees in front of you get in the way. I have since come to find that time and experience provide perspective, and perhaps wisdom in understanding the meaning behind this phrase.

Oftentimes we get caught up so much in the minutiae of life, that we fail to see the big picture. Life, though, is comprised of the little details. We need to take time to look at the forest and the individual trees. Today was filled with trees.


Clara was unhooked from her IV and her morphine drip for a solid hour this morning and she was THRILLED! She walked to the physical therapy gym, spent time in the gym throwing toys around and picking them up, playing basketball, climbing stairs, throwing balls, etc. It was heaven for this little girl who has been confined to a bed for much of the past 2+ weeks.

After PT, we returned with Clara to her room. Okay, we tried to return. She wanted to walk the halls, ride in the little coup car, and go with daddy to switch the laundry to the dryer. As soon as I opened the washing machine, Clara said "my turn" and proceeded to pull her blankets and clothes out of the washer and throw them in the dryer, which she followed by saying "I did it." This was the highlight of my day. Watching a 2 year old play and help with chores. Certainly not what I had in mind after graduating from college and finishing a master's degree, but I wouldn't have it any other way.

Wednesday, June 8, 2011

Today

Morning doctor visit

No, she's not sleeping, just refusing to open her eyes
Eating in a high chair. Makes meal time a bit easier. Why didn't I think of that. Thanks  Aunt Tomi!
Playing with the doctor's toy. 

2 visitors from back home (always so nice to see a familiar face!)
2 hours of wearing eye patch (trying to strengthen the other eye so it doesn’t cross)
2 pieces of pizza (celebrated my brother’s birthday in the hospital room)
2 hours of napping (yesterday was taxing on her body)
2 minutes of screaming in bath (first real bath in over 2 weeks, didn’t really like it)
2 wagon rides (never can have enough of these)
2 letters in the mail (the nurses like delivering as much as we like receiving)
2 pound weight gain in 24 hours (her, not me, well, maybe me who knows)

And there you have it. Our day in 2’s, interspersed with minor tantrums, cute 2 year old conversations and photo updates of our cute little crew at home. 
At the park with this week's surrogate mother.

Tuesday, June 7, 2011

A first time for everything

Clara's cancer has spawned a number of firsts. A few friends have joined facebook for the first time, presumably to receive the daily updates on Clara's condition. And now, I am making my first blog posting, both to assist Natasha in the daily updates and to share a portion of my experience in our family battle with this awful disease.

I drove up to Spokane this morning with the intention of sending Natasha back home with our car so she could have a day (or two) off and spend some time with the other children in their natural habitat. Our numerous visits with doctors prevented her from going home, but I don't think she could stand to be away from Clara anyway. Clara has been up and down again today. I think it's safe to assume that will be a blanket statement each day for the next year.

The physical therapist came with the wagon to take Clara for 15-20 minutes of PT this afternoon. Once Clara was out of bed, she didn't want to have anything to do with the wagon. She wanted to walk! So down the hall, to the elevator, and down another hall we went. During PT, she played with a number of toys, throwing them around the room and then walking or crawling to pick them up. After she finished her PT, she wanted to walk back to her room. All in all, she probably walked as much today as she has the whole time she's been in the hospital. Later in the afternoon, she went on a wagon ride, rode around in the little car, and went on another short walk. This was followed by a long nap - the poor girl was exhausted.

Since Friday Clara's eyes have not been tracking together. Her right eye has a tendency to cross and she has had a twitching problem when she sleeps. Today we met separately with a neurologist, an ophthalmologist, the surgeon and the oncologist about this issue. They each have their own theories, but this really is minor compared to everything else she's dealing with. In a message to a friend, I compared this to getting a blinker replaced when your transmission goes out. Each time we meet with the oncologist, it seems like Clara is throwing something at him that he's never seen before. Educationally, she's wonderful. Medically, she's a challenge.

During the past two weeks I have been in a state of constant amazement. Amazed at the strength and inspiring words of my wonderful wife through this ordeal, amazed at the resilience of our other four children, amazed at the kindness and generosity of family, friends, neighbors, and complete strangers in bearing this burden with us and helping to brighten what could otherwise be our darkest days. I am amazed by the transformation I've felt within myself - with potentially millions of dollars in hospital bills coming in our near future, I feel a sense of calm and peace that is completely out of character. It is amazing to me that when I think about what is really important in my life - my family, my faith, my friends, relationships, etc., none of the material things that envelop our lives really matter at all. This experience has truly helped me to re-consider my life's list of priorities. Finally, I am amazed to have a Savior, Jesus Christ, who suffered all that he might intimately know our pains, our fears and our agonies. He knows Clara's pain and our pain as we watch her fight this disease.

There is a hymn we sing in church which perfectly describes my emotions during the past few weeks.

I stand all amazed at the love Jesus offers me,
Confused at the grace that so fully he proffers me.
I tremble to know that for me he was crucified,
That for me, a sinner, he suffered, he bled and died.

Chorus:
Oh, it is wonderful that he should care for me enough to die for me!
Oh, it is wonderful, wonderful to me!

I marvel that he would descend from his throne divine
To rescue a soul so rebellious and proud as mine,
That he would extend his great love unto such as I,
Sufficient to own, to redeem, and to justify

I think of his hands pierced and bleeding to pay the debt!
Such mercy, such love and devotion can I forget?
No, no I will praise and adore at the mercy seat,
Until at the glorified throne I kneel at his feet.

Monday, June 6, 2011

Featuring #1 and #5

First up: Chandler participated in his class's wax museum today. And since I couldn't be there, thoughtful friends sent pictures and video. He chose Philo T. Farnsworth which is completely appropriate for the boy who likes television more than breakfast. We have been talking for months about making a TV for him to be behind while reciting the monologue. Then, life sorta changed. Grandpa Woodward, with some help from Grandma I am sure, stepped up to the plate and made sure he had what he needed for the project. I'd say it was a success for sure. (I know, he's so cute!)



Clara had a better day today. She had the MRI late this morning and so I had to put off her pleas for food for way too long. My biggest complaint is that they do not get the babies in for the MRIs (which they need to be sedated for) first thing in the morning. But, that is a whole 'nother blog. The MRI showed no change since the last one she had about 2 weeks ago. We are just grateful the tumor isn't getting bigger, but it hasn't gotten smaller yet either. It can take up to a month to for radiation and chemo to start shrinking tumors so it was no big surprise. Her eyes, particularly her right was doing the lazy thing more today. The eye doctor is going to come tomorrow to see her so hopefully she can get it figured out. If it's not one thing its another. . . It's OK though she was much happier today. They got her on the right pain med level now so she is much more comfortable. The afternoon nap resumed today, hooray! 

Pulling Clara in the wagon around the floor tonight I realized that we are the only ones remaining from when we got here two weeks ago. Everyone else has come and gone. Soon that will be us. Coming for a few days and then leaving. I'm already looking forward to taking Clara home someday. But, trying to have that balance of patience and hope is tricky. Getting through one day at a time really is the only way to go. 

While on the phone with Brian tonight I mentioned to him that I am so glad I don't have any regrets that we didn't do more together as a family. I don't want that to sound arrogant, but I really am grateful that we utilized our time together well. Whether it was housework, bike rides, family drives we spent as much time together as our work/church schedules allowed. Especially during this next year as our time together will be limited I am glad that my children have memories of things we did. As quickly as lives can change from one moment to the next, I think that not spending enough time together as a family is a regret no one wants to have. 

In a world of turmoil and uncertainty, it is more important than ever to make our families the center of our lives and the top of our priorities. Families lie at the center of our Heavenly Father’s plan.

Answered prayers

If there's one perk to this place it's the open air balcony with a view.

If you want to know some of the ways your prayers have been answered keep reading.  

With the cancer growth Clara has around her sphenoid bone and optical nerve, vision loss has been a concern. This is why they quickly treated her with 3 radiation treatments on and around those regions to halt cancer growth and hopefully preserve her vision. For the last week and a half we've been careful to note any irregularities. Up until a couple of days ago everything seemed fine then we started to notice her eyes weren't tracking together, sporadically. This morning during the rounds the on-call doctor noticed this issue and ordered a CT scan immediately. 

There was no time for sedation as had been done before so they were just going to use Versed. When we got to the scan room I suggested that we try it without Versed since she has had adverse reactions to it in the past. The ultimate comfort for Clara when all else fails is simply gripping the finger of Brian or I. They laid her on the table and got her situated for the scan. She remained calm and kept a tight grip on my finger while they got everything into position. It is a bit scary for a two year old to have her head sandwiched between supports and have a big machine making sounds similar to a plane taking off surround her head. As she started to get a little uneasy, I started to sing her some of her favorite primary songs. For 10 minutes while they got the images they needed she lay perfectly still! Needing only my finger and my imperfect singing voice. Really a miracle! She wowed all of the people who were behind the glass windows and they praised her perfect behavior. And then I learned that Clara wasn't the only one who could hear me sing. A little embarrassing? Yes! But, even still, worth it. So proud of her! 

More good news: The CT scans shows improvement since her last one 1 1/2 weeks ago! They think the reason she is having some eye issues is because they were starting to decrease her steroid dosage and she probably still has some swelling because of the radiation. So, they are upping the dosage again. If her doctor wants to get a more accurate look she may have an MRI in the morning. 

I don't know what else to say, but...thank you, for your prayers, faith, hope and charity. 

Saturday, June 4, 2011

We were all together again

We got news this morning they were upgrading us to "the suite". Reserved for those who will be here awhile and since Clara is the highest risk patient on the floor at this time we got to move in. Yipee?! Attached to the regular room there is a sort of living room with some of the comforts of home. It was perfect timing since the crew arrived and could help us move in.

The boys, mainly Carson, got right to work with the package of pipe cleaners. As I look at these pictures I am trying to figure out why Carson will wear these pipe cleaner glasses for three hours at the hospital, but refuses to wear his REAL glasses at home or school...


Carson was so proud of the cancer ribbon he made.

Fu manchu while eating.

 Carson created this. I love 8 year olds.

I think the main reason they like to come here is to roll around on the Plasma cars. Somehow I missed getting a photo of Kate, she was a bit elusive today.

Clara didn't want to sit up, but I still wanted a family picture. 

I just have to say all I really wanted to do today was pack my family up in the Suburban and go home with them. I want to go back to doing their laundry, fixing their meals, waking them up in the morning and kissing them good night. I don't want Clara to hurt anymore. I want her to run, and jump and play instead of being confined and hooked up to IV's and monitors.

But, it is all going to take time and patience. Thank goodness that the four children I am away from are so resilient! It's such a blessing and does make it easier that instead of clinging to my leg they're bolting to the door. This too shall pass and we will all be together again. 

The past couple of days have been difficult for Clara. More good days are just around the corner, I have to keep reminding myself. She really is being so strong and putting up a fight! Thank you for all of the prayers...they are being heard and answered in many ways we don't even realize. 

Friday, June 3, 2011

A favor


The children and teachers in Clara's Primary at church on Sunday posed for a photographs, drew pictures and wrote Clara notes that were compiled in a scrapbook and delivered to her on Monday. Throughout this past week she has spent many segments of her day turning the pages and looking at the faces of her fellow friends at church. Children who are praying for her and exercising great faith that Clara will get well and be back with them in Primary soon. This scrapbook has proven to be a great distraction for Clara. The best medicine! She loves to look at happy, smiling faces. (who doesn't?) 

I was thinking about so many who ask what they can do. I always say, "keep praying". Now I have an addendum. Will you send a photograph of you or your family? All you who are praying and pulling for Clara?  I want to put them in a photo album so Clara can see smiling faces of people all over the world who are praying and thinking of her. It will be sure to put a smile on her face!

Our home away from home:

Clara Woodward
c/o Sacred Heart Children's Hospital
Pediatric Oncology and Hematology
3 East
101 West Eighth Avenue Room 305
Spokane, WA 99204

In other news, Brian and Baden arrived today. They walked in during a particularly rough time for Clara, but she immediately forgot all of her problems and focused on Daddy.

A short time later a visitor came, Baden was a willing poser, wad of gum in the side of his mouth and all.



We are looking forward to tomorrow when the rest of the family comes for a visit. Hopefully it will lift Clara's spirits as they have been a little down today. The bad days help us to savor the good ones, so we can't complain. She's a strong one though and is getting much of the staff wrapped around her little finger. It's rather impossible not to.

Thursday, June 2, 2011

Sweetness

She begged me to take her on a wagon ride when I was trying to get her to go to bed for the night. Whatever Clara wants, Clara gets. :) 

Clara's first physical therapy session was this morning. It only lasted 15 minutes, but it did her in. Her white blood cell counts are starting to drop as a result of the chemotherapy so she has less energy than she had a couple of days ago. Yesterday they started the Neupogen injections that will be given most days to help boost her white blood cells. She also got her first blood transfusion this afternoon, all the while eating 2 personal pan Pizza Hut pizzas. She lost a little at the beginning of her feast, but kept on plowing through the pepperoni and Hawaiian pizza, alternating bites. I suppose she was making up for the weeks of not eating. They even delivered it to our room. I think she could get used to this!

Oh how life has changed in just a short amount of time! To think that just two weeks ago I was lamenting on what to cook for dinner and now I'm lamenting on how to keep Clara from tugging at her central line.

Yet through it all, she remains sweet and submissive. It's a bit unreal actually. A two year old telling her nurse, "thank you, thank you" after an injection two days in a row. The thank yous are endless. Take her temp..."thank you". Check her blood pressure..."thank you". Listen to her heart and lungs..."thank you". Every so often the spunky two year old will make an appearance and say "no" to me, but it's very rare. In the condition she is in and the things she endures, I'm completely amazed. This little 2 year old blond girl has a mission and purpose. I am thankful I have the privilege of sharing it with you.      xoxoNatasha

Our Father in Heaven, in His great wisdom and love, sends His spirit sons and daughters to this earth as children. They come to families as precious gifts with a divine nature and destiny. Our Heavenly Father knows children are a key to helping us become like Him. There is so much we can learn from children.

Wednesday, June 1, 2011

Heavenly helpers

I love this picture my cousin Sarah took today of Clara longingly looking outside.

Last Monday, after we heard of Clara's diagnosis, my cousin joined in with many others petitioning prayers for Clara on Facebook. A friend of hers from BYU replied to the post: "My nephew was cured of that. You should call me at noon." 

Later in the evening my cousin texted me the name and phone number of the mother of the boy. The mother's name is Bethany and she lives in Idaho. In the back of my mind I wondered if it was the same Bethany I knew at BYU who lived a few doors down from me at DT my Freshman year. What are the odds? I was eager to call and talk to someone who had been through this experience so I quickly called Bethany. As soon as she answered, I knew it was the same Bethany from BYU with whom I had lost contact with over the years. (Although, about 3 years ago I did run into her at BYU Women's Conference.) Bethany had also wondered if by chance it would be me when she learned a Natasha  from Washington would be calling. 

During the first few minutes of our conversation last Monday we marveled at the preparation that Heavenly Father had made nearly 14 years ago. To be able to talk to a friend whose son survived neuroblastoma who knew the worries of my heart and was able to empathize with me was not a coincidence. Hearing first hand the miracle of her little boy being cured from neuroblastoma gave me hope and comfort in a time of uncertainty. As I spoke with Bethany again today, her reassurance that everything is going to be ok gives me strength and reminds me that WE can do this, everything will work out. Thank you Bethany :)

How blessed we are to have a Father in Heaven who knows the end from the beginning and provides us with people who can minister to our needs along this mortal journey. Just like Bethany has been through this and can share the same experience, the Savior has felt both Clara's pain and our pain as her parents in watching her suffer through this. He will not hold back his love, his wisdom, or his comfort from those who earnestly seek him.