Monday, June 27, 2011
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
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
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
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
|The happy crew on Saturday. The first time Clara has been able to walk when they've come to visit.|
Monday, June 20, 2011
Sunday, June 19, 2011
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
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!
While mom and Clara have been in Spokane, the boys have been doing the following:
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.
Thursday, June 16, 2011
darling hats delivered
3 wishes granted a PINK cozy coupe & a radio flyer wagon (thank you!)
and lots of smiles and giggles
Wednesday, June 15, 2011
Tuesday, June 14, 2011
|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?|
Smiling for the whole world to see.
I can do and say happy things each day,
For I know Heav’nly Father loves me.
Monday, June 13, 2011
|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
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.”
Friday, June 10, 2011
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.
Wednesday, June 8, 2011
|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.|
|At the park with this week's surrogate mother.|
Tuesday, June 7, 2011
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.
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
Saturday, June 4, 2011
Friday, June 3, 2011
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
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.