...all these things shall give thee experience, and shall be for thy good.

Eight months later.

2012-01-25T13:58:00.000-08:00

I know it has been too long since I have updated this blog and many are wondering how Clara is doing. In short, everything with Clara is perfect. Family life is busy and happily so! It was exactly 8 months ago I started blogging about Clara and neuroblastoma. In some ways it seems like forever ago.

A long 8 months ago life looked like this:

Today things are much happier. And we are enjoying each and every bit of our normal lives.

Fun facts:

Clara no longer has a central line so she takes showers and baths whenever she wants. Sometimes hourly.

Her hair is growing. So quickly!

Her night terrors are diminishing, yet she always seems to find herself in between her parents. She likes to hold our hands just like the good 'ole days.

She has a media addiction. Understandably so, but I'm not sure how to break it...

Her favorite books are "Pinkalicious" and "Fancy Nancy." The other day she "read" them to me. It got me all teary. That happens a lot!

She is our own personal tornado. It's pretty impressive how quickly she can make a mess. It doesn't usually bother me because I know what the alternative could be.

She thinks clothing is optional. Which usually leads to another shower. I could write a book patterned after, "If You Give a Mouse a Cookie." I would probably title it, "If You Change Clara's Diaper."

Clara won a contest (with the help of you!)

Last night as I was reading The Book of Mormon, I came across these verses in Alma 26. I was overcome with emotion because the words completely capture my feelings. In the words of Ammon:

35 Now have we not reason to rejoice? Yea, I say unto you, there never were men that had so great reason to rejoice as we, since the world began; yea, and my joy is carried away, even unto boasting in my God; for he has all ^apower, ^ball wisdom, and all understanding; he comprehendeth all things, and he is a ^cmerciful Being, even unto salvation, to those who will repent and believe on his name.

36 Now if this is ^aboasting, even so will I boast; for this is my life and my light, my joy and my salvation, and my redemption from everlasting wo. Yea, blessed is the name of my God, who has been mindful of this people, who are a ^bbranch of the tree of Israel, and has been ^clost from its body in a strange land; yea, I say, blessed be the name of my God, who has been mindful of us, ^dwanderers in a strange land.

37 Now my brethren, we see that God is ^amindful of every^bpeople, whatsoever land they may be in; yea, he numbereth his people, and his bowels of mercy are over all the earth. Now this is my joy, and my great thanksgiving; yea, and I will give thanks unto my God forever. Amen.

After Clara's appointment in Spokane the beginning of December, her oncologist referred her to hospice. Typically, from what I understand that is done for patients who have a life expectancy of six months or less. When we met with them Clara was running circles and in her show off mode. They remarked that she looked just fine. How we hope that six months comes and goes with Clara still running circles around our home! This much I know: whatever happens in the future for Clara, she is exactly where she needs to be. Home. We all need her home. This is a miracle! And I shout from the rooftops:"Yea, I say unto you, there never were men (or mother) that had so great reason to rejoice as we (me)..."

And so I will continue as I have for many months now to give prayers of thanksgiving for Clara's miracle and fervently pray for her continued health and healing. Thank you all for your prayers and faith for Clara. I have rarely gone anywhere the past 3 months without complete strangers coming up to me and asking, "is this Clara? I've been praying for Clara." To those near and far who love Clara and pray for her know we are seeing and experiencing the answers to those prayers.

29 ...have miracles ceased? Behold I say unto you, Nay; neither have ^aangels ceased to minister unto the children of men.

thankful thoughts.

2011-11-18T07:49:00.001-08:00

A couple Sundays ago we were headed out the door for church and Clara proclaimed, "Picture time!" And since it was Clara's idea, they all rallied around the idea and just look how cooperative they all were. It was awesome!

This picture sums up my thankful heart. Five children, together. Each with their own talents, struggles, triumphs, personalities, and spirited natures that combine to make our home the only place I ever care to be. After months of being separated, this is a blessing I will never take for granted again. All those seemingly mundane and thankless tasks? I am thankful for them. I'd like do nothing more till they aren't around for me to do them anymore. I am thankful to be their mother. I love it!

And our dear Clara? The one we pray for continually and have so much hope for? She's doing great. Aside from a bit of post-traumatic stress disorder manifested every night with night terrors (when she screams in her sleep things she said in the hospital) she's resumed a relatively normal life. She hasn't had any pain, she is eating perfectly and her mobility is spot on. While we are hoping for a miracle, at the same time we are holding our breath. Waiting for symptoms to appear and give thanks after each day that resumes on as normal for Clara. Thank you for your faith and prayers. They are what kept us all holding on during those months of treatment and helping Clara and us to continue on. We are thankful for you. We are thankful for God. We are thankful for a blessed life.

Bliss

2011-10-30T23:08:00.000-07:00

Brian and I feel our family is living a miracle these past two weeks. All 7 of us are in a blissful, happy state. I think Clara may be the happiest. She is doing so well. It seems she is picking right back where she left off back in May. She is a totally normal 2 year old. And we couldn't be happier about it. There are some minor things she deals with, but nothing that can't be smoothed over by some tender loving care.

The other day I mentioned to Brian that remarkably my mind is not preoccupied with what's next or what the future holds. We agreed this is a blessing. Of course we have moments where we wonder how long this will last, these days of Clara playing and living the 2 year old dream, but we choose not to dwell on that which we have no control over. It is in the Lord's hands. His plan is perfect and His ways are perfect. These trials most definitely have given us much experience and been for our good. We have been greatly blessed. Each day is a gift and we thank God for each new day.

We are happy to be home together.

2011-10-14T23:41:00.000-07:00

Chandler and Clara enjoying some carefree playtime today.

Last Saturday while Clara was still inpatient, her oncologist visited with us about the next phase: stem cell transplant. He presented us with two options. Number one: we could enroll her in a clinical trial in which she would be randomly selected for either one transplant or two transplants. Number two: we could opt out of a clinical trial and proceed with the standard of care which is one transplant. You can probably imagine the burden such a decision places on a parent. So we did the only thing we know how to do in time of uncertainty, we made it a matter of fasting and prayer. Meanwhile we read over the literature we had been given, searched the scriptures, and poured over the words of our church leaders.

By Monday morning Brian and I independently had our answers. We both knew with no amount of uncertainty, Clara was to receive no stem cell transplant. Medically it makes no sense. But we can make no excuse for the answer we have been given. There is a blessed assurance of peace and comfort that has accompanied this decision in knowing it is God's will. But, it is hard. Really, really hard. We pray every day, as we have since May 23rd, for a miracle of healing, but if not, trust in the Lord's plan for her and our family. We have had many tender mercies this past week reminding us of a loving Heavenly Father who is watching over us. We are grateful to know that we can be together forever as a family. Knowing that, well, it makes trials like this, easier to bear.

Wednesday and Thursday, Clara underwent a barrage of scans and tests. This evening we were given the results of most of them and are encouraged. In comparison to the previous work-up the neuroblastoma cells have greatly decreased in number. Initially she had "spots" in dozens of places within her body, and now the only seemingly active areas are her optic nerve region and the location of her primary tumor in her abdomen. It is possible these sites are actually scar tissue or dead cells, unfortunately there is no way of knowing.

The road ahead is long and uncertain. We will take it as it comes and trust in the Lord to direct us in the decisions we make for Clara. Meanwhile we will savor the time we have together as a family spent at home.

Brief Update

2011-10-11T22:02:00.001-07:00

I don't have a lot to say tonight. At least not here. Clara has been out of the hospital for a day and a half now and is enjoying her freedom and some actual food (you know, the kind that doesn't enter your body through an IV). Tomorrow morning we begin two days of tests to see how her organs are holding up and to determine what progress has been made in fighting this cancer.

There is a lot going through our minds right now. So much gratitude for the prayers of many hundreds in Clara's behalf. It is shocking how many people we know whose lives are affected by cancer. We pray for you as well and thank the Lord for your prayers of faith.

In ancient times there were wars, famines, and natural disasters that helped to soften the hearts of the people and bring them closer to God. Natasha and I discussed today that cancer is the plague of these last days. It humbles us, it reminds us that God loves us, and gives focus to our thoughts, prayers, actions, and priorities.

I have said this before, but it bears repeating. I would never wish this awful disease on anyone, but we have learned from it. Hopefully we have learned lessons that will bless our eternal family, and that will strengthen us in times of trial, because we know that this is not the last, or possibly even not the most difficult trial we will face in this life. I hope we will emerge from this more thoughtful, more sensitive, more gentle, more patient, more kind, more understanding, more loving, and more faithful.

Hope

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Counting the Cost

2011-10-04T21:39:00.001-07:00

Earlier this summer the family whose basement we occupy came home from a campout. Included in Matt's backpack was a canister of bear repellant. He asked me to guess how much it cost. Ignorantly, I figured it was probably about $15. Not even close. $75 for a can about the size of a soda can. Ridiculous, don't you think? Who would pay that much? And they didn't even use it. When you stop to think of the potential consequences of NOT having it, $75 feels like the steal of the century. There are some things in this life that are worth any price. The companies that make bear repellant could triple the price and I would gladly pay it. I feel the same way about Clara's treatment, though there is no way we could ever pay for this without insurance and the generosity of family, friends, neighbors, and complete strangers who have blessed our lives beyond what we feel we deserve.

I recently read an article by a man who was called to serve for three years as a mission president for the Church of Jesus Christ of Latter-day Saints. He would have to leave his home, his country, a profitable business, and many of the comforts and conveniences that he enjoyed without any monetary compensation. While contemplating the requisite sacrifices, a distinct spiritual impression came to him, "don't count the cost."

For the past few months, I have made a mental note of the extreme cost associated with Clara's cancer treatment. The greatest cost has been in terms of time. Time spent away from home and family, friends and neighbors, work and recreation. The possibility of Clara being healed and freed from this disease makes it easy to completely disregard the costs associated with her treatment. I am frequently asked by friends, family, and complete strangers how much is all of this going to cost? We don't even have a ballpark figure right now, but there was one day in July where the total bill to our insurance was more than $75,000. Just a drop in the bucket, right? For the first time in my life, I am able to open bills with a grateful heart. No matter the cost, Clara is worth it.

There are so many learning opportunities we encounter each day. It's almost as if the Lord has enrolled us in an advanced course in compassion, patience, generosity, charity, humility, faith, hope, longsuffering, love, and enduring to the end. We are far from the end, but each milestone makes us grateful for the progress Clara has made.

Yesterday Clara started losing the energy that had blessed our lives during the weekend. She threw up a few times, didn't eat a thing, and her temperature began to rise. By 11:00 she was up to 99.4. At 2:30 when I woke up to change her diaper she had exceed the safety threshold of 100.4 degrees, so I quickly packed our things and brought her to the emergency room. They are so wonderful down there. A room was ready for us, as were her iv fluids and antibiotics. Within two hours, we were sleeping back in the inpatient oncology wing of the children's hospital. Lab results show that once again, Clara's immune system is gone. We're just hoping the digestive tract sores from mucositis will spare her this time. She is scheduled for two days of scans and tests next week. On November 1st she has a morning appointment in Seattle to get started with her stem cell transplant.

We can do this.

Wherefore, all mankind were in a lost and in a fallen state, and ever would be save they should rely on this Redeemer. 1 Nephi 10:6

Moments

2011-09-28T14:10:00.000-07:00

Our hospital days are made up of lots of moments: silly, sad, happy, frustrating, sick, tired, funny and everything in between. Two year old tantrums while hooked up to IV chemo 24 hours a day take the terrible twos to a whole new level. I thought maybe she would get a "free pass" from the terrible twos, but I guess I should just be grateful she can have a fit, right?

Content happy moments are fleeting while in the hospital so I have to act fast and take a picture. This morning we had one of those moments before she launched into a 'get outta bed and go home' moment.

I really think this picture is a symbol of Clara's determination, hope and sweetness.

We had a quick video chat with the kids and Brian before they left for school this morning. Just before we were ready to disconnect, Chandler said, "Give me a hug, Clara!" And she grabbed the iPad and hugged it. Cutest thing ever! Moments like that drown out those 2 year old tantrums. I am grateful for those moments.

*Clara is almost 48 hours into the 72 hour chemo course of the SIXTH round of chemo she has had in the last 4 months. If she is eating and drinking enough to satisfy the doctor, she will be discharged on Friday. We have to stick around here since her counts will drop, and hope she can avoid the fierceness of mucositis and fevers that she had after round 4. On October 12th and 13th she will have the barrage of tests she had at the beginning to see if/where the cancer is still active. If there isn't any new growth she will be ready to head to Seattle for stem cell transplant. Lots of things on the horizon! Thank you again for your prayers and faith. The speedy recovery she had from surgery was a MIRACLE, and we know she will be blessed with more. He is a God of miracles and we know that.

Go forward with faith

2011-09-25T21:05:00.001-07:00

Tomorrow Clara begins round 6 of chemotherapy. She will receive the same drugs for this round as she did for round 4 and the side effects are awful. After 4 days in the hospital she will likely get out of the hospital for a day or two. Then she will spike a fever and be readmitted for 10 days, battling fevers, headaches, and the heart-wrenching mucositis, which coats her entire digestive tract in sores, making it impossible for her to eat, or even swallow. She will most likely contract c.diff, which will put her in isolation for a week and prevent her from leaving her room. I tear up just thinking about what is in store for her.

The physical pain of the whole ordeal is only a part of it. Cancer is so emotionally and psychologically draining, both for the patient and for the caretakers. There is nothing I can even compare it to. What compounds the stress is the frustration that comes from knowing Clara has already been through so much and the treatments really have not had much of an impact on her cancer. The pathology report from her surgery simply said "treated, but viable" meaning that the tumor segments which were removed showed signs of being treated, but were still alive and well. Have you ever had the wind knocked out of you? That's kind of what it feels like every time we meet with the doctors to get more bad news.

The next step after this round of chemo is to go to Seattle for a stem cell transplant, which will likely take 6-8 weeks. That will be followed by a month of radiation and seven months of immunotherapy, which one nurse described as so much worse than chemo. We have been researching alternative therapies, in hopes that we can find something that will offer Clara a better chance of survival without the horrible side effects of the traditional treatment. Sounds too good to be true, right? Clara's original diagnosis left her with a 10-15% chance of survival, based on the research we did. There has got to be a better way.

Natasha and I are both well aware that we may come to a point in Clara's treatment when we need to step back and evaluate whether or not to continue. How much can you watch your tiny child suffer before you say enough and allow her to return home to God who gave her life? Eternally, we will be reunited, but the decision to let go is beyond my personal capacity right now. In spite of the anxiety we feel, when all is quiet and I have time to ponder, I still feel the calm reassurance that everything will eventually be okay.

- Posted using BlogPress from my iPad

Location:Spokane apartment

Waiting on the Lord, and Clara

2011-09-20T11:03:00.001-07:00

Dr Thorne came in this morning and told us that Clara can leave as soon as she eats two consecutive meals. Based on recent history, that could mean we will be here forever. In the last 24 hours she has eaten 1/4 of an apple, a few pieces of candy, and not much else. Some diet, huh?

We have been so blessed by the many hundreds of people who have fasted and prayed for Clara and our family during the past four months. I know the prayers and faith of many of you are responsible for Clara's smooth surgery and rapid recovery. There is no scientific or medical explanation for how well the past five days have gone. Thank you.

So many times we hear people apologize because all they can do is pray. Last week I was talking to a man I do business with. He said something that was profoundly insightful. He said, "I will pray for Clara. It's the most I can do."

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.

Clara hopefully singing her way to an appetite

Location:Hospital

Back "Home"

2011-09-18T21:32:00.001-07:00

Clara was released from the PICU this afternoon and brought back to the pediatric oncology department that has been her home for most of the last four months. While it is nice to see her making progress towards healing from her surgery, it sure was nice to have the extra attention in the PICU. One nurse for every two patients is a luxury over there.

Clara started eating today, though she doesn't have much of an appetite. She also ventured out of bed for about an hour. Part of that was spent in the wagon, and part on the plasma scooter. She definitely hasn't lost her spunk.

We still don't know much about the mass that was removed from her abdomen. The surgeon said some of it was calcified, but we won't know until the pathology report comes back how much of the tumor was "dead" from Clara's chemotherapy treatments. For now we are just focusing on healing and keeping Clara comfortable. Hopefully we can take her home later this week for a while before her next hospitalization.

- Posted using BlogPress from my iPad

Location:Spokane

Surgery- one of many big days

2011-09-15T22:11:00.001-07:00

For those not aware, Clara's tumor resection that was scheduled for last Wednesday was rescheduled for today because her blood counts were too low. As always, the bump in the road proved to be a blessing as Clara was able to go home for a few days. It was a sweet escape!

Today was the day we had been anticipating for nearly four months as it was one of those milestones along the path to Clara getting better. Knowing that the tumor had not shrunk any since the initial scans the hope was that the surgeons would be able to remove as much as they safely could. After 5 hours of surgery, the surgeons were able, as far as they could tell, remove 95-99% of the tumor. It was a very delicate surgery involving many blood vessels, main arteries and vital organs. Quite miraculously she only lost 5-10 cc's of blood! We are anxious to hear the pathology report to learn the make-up of the removed tumor tissue.

We have been through a similar experience with Carson when his brain tumor was removed. For the most part Carson's tumor resection was the end. With Clara it is just the end of the first phase of her treatment. She has many hurdles yet to overcome, but as we saw today and have seen many times before in these past 4 months she strengthened and protected in her afflictions. The peace and comfort Brian and I felt today was remarkable. We know the prayers of others petitioning our Father in Heaven on our behalf lifted us today. And without a doubt guided the doctors throughout surgery. We trust He will continue to bless and heal her as she recovers.

Carson and Clara in the ICU post surgery----our 2 tumor kids. He was a great distraction for us today.

The long road that remains will continue to test and try us, but experiences like this certainly help us to know that we are not alone. In addition to countless friends, family members and complete strangers, the Lord has strengthened and comforted us, helping us to know of His love for us and His knowledge of what is best. He knows what we need more than we do and His timing is always right. We continue to pray for understanding and for patience as we wait on the Lord to heal Clara as only He can.

Moving Forward

2011-09-03T09:53:00.001-07:00

We met with the surgeon yesterday after getting notice on Thursday afternoon that she was scheduled for surgery on the 7th. We were surprised they wanted to operate since the tumor had not shrunk. Yesterday, we asked the surgeon why they are moving forward despite lack of progress in shrinking the tumor, he simply stated, "We need to get it out of there." We totally agree! It is our hope that the mass is dead tumor and there are no active cells remaining. So, at 8:30 am Clara will go in for surgery to get that monster out of her abdomen. There are lots of critical arteries and vital organs involved so we will pray for the divine guidance of the surgeons' hands. We feel at peace and know the Lord is, as her surgeon acknowledged, the greater physician. Assuming she is able recover from surgery well enough, chemo round six will begin 12-14 days post surgery. After she recovers from that round we will head to Seattle for transplant about 14 days later. We are grateful for your continued prayers offered on behalf of Clara and our family. Thank you from all of us.

Limbo

2011-08-31T15:57:00.000-07:00

I really love this picture of her and her favorite musician Terry, during her last stay in the hospital.

No news isn't always good news. Sometimes it means I just don't know what to say or how to say it. We got the results from the CT scan Clara had on Monday and in a word it was frustrating, yet a reality we knew we might face given the extent of the disease. The abdominal tumor hasn't changed since the initial scan she had when first diagnosed. The head tumor decreased 3mm, possibly a result of the radiation treatments she received. Given this disappointment we recognize the miracle that despite no shrinkage she is feeling so much better than she did 3 months ago. We haven't lost hope. Maybe this last round of chemo she had will do the trick. We are in limbo till Friday when we will talk to the doctors to get an idea on where we go from here. Chances are she won't have surgery on Tuesday as we had tentatively planned on. We are learning to thrive (somewhat) on living in limbo.

In the meantime she is out of the hospital and doing pretty well. Every night I hook her up to an IV so she can get fluids since she isn't eating/drinking enough to sustain her. The anti-nausea med she is on is so much better so at least her nausea is under control. I'm definitely counting the new med and home IV's as blessings!

“Trust in the Lord with all thine heart; and lean not unto thine own understanding.

“In all thy ways acknowledge him, and he shall direct thy paths” (Prov. 3:5–6).

In other news, our 3 boys started school yesterday. My heart ached not being able to be there, but Brian did a good job covering the mom duties. Definite "Father of the Year"...now if only he could coach them in taking less awkward pictures :)

After school pictures, maybe that's why they weren't as cooperative...we'll go with that.

3 months

2011-08-23T23:51:00.001-07:00

May 23rd Clara was diagnosed with neuroblastoma and this new life of waking up each morning realizing that in fact it hasn't been a dream, my 2 year old has cancer, began. And now, three months later Clara is starting her fifth round of chemo. The last three months have been the hardest, most blessed days of my life. An experience I wouldn't wish on anyone, but then again, wish everyone could have an experience like this that brings blessings right along with the struggles. Clara still has a long road ahead of her. We've had a little taste thus far of what lies ahead. The sweet and the bitter, the ups and the downs. I'm slowly learning and trying to surrender my will to the will of the Lord, putting my trust in him and letting him carry my burdens. It's all I can do and all I need to do.

Tonight, Clara finally got her first dose of one of the two chemo drugs she is getting this round. She also had a renal ultrasound tonight to check her kidneys/bladder I'm hoping everything checks out normal! We are expecting her to be pretty nauseous this round as she was with round 3, but grateful she won't have to deal with the mucusitis (that's with the next round). So far she is peacefully sleeping. I'm sure when she wakes up in the morning she will want to continue the Anne of Green Gables marathon we had today, a welcome break from Mickey Mouse! She has c-diff again, so we are back in isolation...

Home

2011-08-17T21:48:00.000-07:00

I could have kissed Clara's doctor today when he said she wasn't ready to start chemo today and we could go home. She will start round 5 chemo on Monday. Clara needs this. It is a sweet reprieve and hopefully we can avoid any problems. We are guessing that this won't happen again until after her transplant. It is hard to believe it has only been 12 1/2 weeks since this all started. It feels like 12 1/2 years. Oh, it is good to be home! Heavenly Father answered my prayers, we are so blessed.

Still here

2011-08-13T00:01:00.001-07:00

We had hoped Clara would be released today, but the pain has persisted as well as her refusal to eat and drink anything. She is dependent upon the IV fluids and nutrition and continuous pain med she has been on for the last 10 days. The trial of weaning her off of everything today proved to be premature. So tomorrow we will try again. Round 5 of chemo begins on Wednesday and we are hoping that she can get a hospital break for a few days before she has to come back. Oh, how we all need a break!

Clara is noticeably weary of everything right now. Does she even remember what life was like before neuroblastoma, chemo and hospital stays invaded her toddler world? Everyday I long for that old life to come back to her. Soon enough we will return to that old life--- in our house, on our street, together again without another hospital visit looming over our heads. That is why I look forward to each new day. Clara is that much closer to home.

Isolation

2011-08-07T18:12:00.001-07:00

Blanket pulled up over her head. I don't blame her.

It was only a matter of time before we got the dreaded isolation sentence like so many others on the floor have gotten. Today it was Clara's turn to be quarantined in her room. C-Diff has made its' way to Clara's digestive tract and it really comes as no surprise. Most oncology kids get it. It explains the continual fevers and a slew of other symptoms. All of this on top of the mucositis. The blessing for the day is she felt well enough for 10 minutes this morning to take a quick spin around the floor in the wheel chair, and she felt well enough to eat two cheerios and take four or five licks of a popsicle. The rest of the day has been more fevers, nausea, sleeping and overall misery. As soon as her white blood cells start growing she will start healing. The cycle will continue. Bad days and good days. Those good days are cherished and not taken for granted. We HOPE that soon she will be back to cruising the halls or at least feeling like she should.

Just know that your prayers are helping her sleep and rest. They are also giving her brothers and sister as well as her parents comfort and stamina. I read something today that rejuvenated my will to continue pressing forward in faith:

We should never let hope be displaced by despair. The Apostle Paul wrote that we “should plow in hope” (1 Corinthians 9:10). The exercise of hope enriches our lives and helps us look forward to the future. -Steven E. Snow

There is so much heartache, disappointment, sorrow and pain in this mortal life. If we keep hope in our hearts and minds each day, it makes all the trials and challenges that much easier to bear We hope tomorrow will be better for Clara!

Quick Update

2011-07-30T12:45:00.000-07:00

This morning at about 7:15 the nurse came into our room to get Clara prepped for surgery. Fortunately, there weren't any delays and they got her right in to the OR. While we were in surgery prep, the anesthesiology nurse asked Clara if she wanted to go blow up a balloon (code word for inhale laughing gas). Clara jumped out of my arms and into hers, thrilled at the chance to get a balloon. It was perfect.

An hour later the surgery was done and Clara had her line back in, albeit in a new location - more scars, ugh! She came out of sedation with an atypical "I sleeped good." Very cheery and happy, which isn't normal for someone who has just had her insides explored.

We brought her back to her room, got her situated, and dressed, and she's been sleeping ever since. Poor little girl needs to make up about 12 hours of missing sleep from the last 2 days.

respite

2011-07-29T23:21:00.000-07:00

Chandler, Carson, Baden, Kate and I rolled into our driveway at about 11 last night. It took awhile for the boys to settle in after we unpacked the car. They had to check everything out. Carson's banana pepper plant died, there was a big hole to hold our trampoline (our planned summer project done thanks to the service of many), the house was a sweltering 86 degrees and there were 15 messages waiting on the answering machine. It was nice to be home. But, we all felt a little empty that Brian and Clara were still in Spokane in the hospital. I now know how Brian felt when Clara and I were away. Baden said it best the first few minutes after we got home last night, "I wish Clara's cancer would go away so we could have a normal life again."

On the go.
I love this normal picture from a year ago.
I can't wait to take before church pictures in front of the red door again.

Isn’t that what we all desire: to be the heroes and heroines of our own stories; to triumph over adversity; to experience life in all its beauty; and, in the end, to live happily ever after? DIETER F. UCHTDORF

post edit: I started this post this morning. This has been an emotionally draining day and I am ready to put it to bed! Because of the drama in Spokane we are heading back to Clara and Brian sooner than expected so I can be there when she wakes up from the anesthesia in the morning. Based on the past 2 trips I've made home in the last 9 weeks I am beginning to wonder if they are worth it.

Understanding

2011-07-29T15:15:00.000-07:00

Wisdom is the principal thing; therefore get wisdom: and with all thy getting get understanding. Proverbs 4:7

Since Clara first entered the hospital over 2 months ago, I have had a lot of time to read, to think, and to contemplate life and it's many challenges and opportunities. Just this morning, while Clara was sleeping, I finished reading Charles Dickens' Great Expectations, the story of a boy (Pip) who lived a contented life, but wanted more and was blessed/cursed with almost everything he thought he wanted. At the end of the book, the boy (now a grown man) returns to his roots and realizes there is goodness in contentment and in living a good and honest life. People he once loathed because of their lowly station in life become the boy's heroes and greatest source of admiration.

I hope that Clara's cancer has helped me to get wisdom and understanding, much like the boy Pip received. Most of all, today I am thinking about motivation. Why do I do the things I do? Is it to be seen and admired of others, to have something to be proud of? Is it because I expect something in return? Do I do the things I do because I am trying to be more Christlike and truly care for my fellow man? Oftentimes, the answer is "I don't know." I hope that I have pure motives for my actions, but sometimes I question myself.

Natasha and I have certainly reexamined our priorities since Clara's diagnosis. Time is our most valuable asset, and it must be spent with our family, particularly with our children. Even if that means the seven of us spend most of the summer in a one-bedroom apartment. We will spend more quality time with our children because we love them and because we want the best for them.

Many of this blogs' readers (probably all of you) are particularly interested in Clara and how she is doing. We came back to the hospital on Wednesday for round 4 of her chemotherapy. She began Wednesday evening around 6:00 with 3 different drugs, which I will likely misspell. Vincristine is injected into her line in about 30 seconds. She gets this 3 times, once per day. Cyclophosphamide goes in via IV drip over about 6 hours. She gets this twice (done with this now). Doxorubicin is also injected via IV drip over a 72 hour period. All this means is that Clara is constantly hooked up to her "robot." No running, jumping, or scootering for Clara this time.

The previous paragraphs were written during Clara's nap this afternoon. Things have taken a turn for the worse since then. Clara awoke from her nap in good spirits, wanting to eat, drink, and go for a "litto walk." Her walk ended abruptly when I noticed she had pulled out her central line. With all the doctors and nurses have taught us about these lines, and knowing Clara's susceptibility to infection, I panicked, picking Clara up and running down the hall to the nurses station. In a period of a few seconds I was dripping cold sweat as my heart raced as if I'd just sprinted a mile. The charge nurse quickly ascertained the severity of the situation, calmly informed the oncologist and got to work. Within minutes Clara's wound was stabilized.

During the whole episode Clara was calm, but frustrated that we had interrupted her playing. I am hopeful that she didn't get any bright ideas about pulling her line out when she really wants to have a good time. After she was patched up, she ran and jumped up and down the hall and had to retry every toy car and scooter in the hospital. She was euphoric. This didn't last long either. Because of potential contamination with the chemo drugs which dripped into her system outside of her veins, Clara needed another IV drug. IV drug + no central line = IV in the arm/hand. Three tries, a lot of blood and tears (hers and mine) later, and she had the medication that she needed.

Ever the good-humored child, Clara looked at the work of the nurses and said, "Clara funny hand."

Because of Clara's handiwork and my inattention/inability to protect her from herself, tomorrow Clara will undergo surgery at 8:00 am to place a new Hickman line in her chest. When she is sufficiently recovered, she will resume her chemotherapy regimen - one quick drug and the other over 24 hours. After the surgeon explained this all to me, I had a small chat with Clara, 99% of which flew right over her head. She did seem to pay particular attention to the part where I told her "save the drama for your momma."

Stay tuned . . .

Hope

2011-07-22T23:08:00.000-07:00

Today we were advised to not bring the kids with us to Seattle for Clara's stem cell transplant. I almost started to cry right there in the clinic. Disappointing for sure, but I'd been doing some reading on transplant and had pretty much come to the same conclusion.

I know it will all work out. It has so far and always does. Not how I'd have chosen many times, but always so much better.

We have about five more weeks of togetherness (minus the next two chemo rounds) and we are soaking it all in. The past week has been heavenly with all seven of us together under the same roof for more than 3 nights. It's also been a week doused in reality: some arguing, some timeouts, some messes, some insanity. Tonight Baden said the family prayer and closed with, "Please help us to wake up happily and play outside." Sometimes my boy is so perceptive!

Baden making styrofoam "snow". Big mess! But, look at that happy face! Totally worth it.

Will you offer extra prayers for Clara this week before her chemo starts on Wednesday? Pray for her body to respond to the treatments she is getting. Miracles happen and we hope it is God's will that she will be healed...soon. Thank you friends for your prayers, cards, messages, packages and generosity. I can't say it enough. We are touched every single day by the kindness and love we feel from you. You are a blessing to us and not a day goes by that we don't pray you will feel our gratitude.We love you.

Rolling along...

2011-07-20T23:32:00.000-07:00

During transfusion...the chocolate chip cookie was just what she needed ... for lunch :)

Clara had a clinic appointment today. We had high hopes that we would get the green light to take her home before she started chemo again next Wednesday. They always draw her blood and then we wait for an hour and a half before we see the doctor. The nurse informed us after the results came back that her platelets were 6 (6,000). Normal is 120-450 (120,000-450,000 or so) Numbers under 10 usually require a platelet transfusion. The low platelets explains her easily bruising. (Like that little one on her head.)

During our visit with her oncologist he verified that she wasn't taking any medications. "None," I affirmed. "Not even the Sceptra?" he asked. "Nope." and then it dawned on the she is suppose to take the Sceptra, a weekend antibiotic twice on Saturdays and Sundays. I totally blew it this past weekend. He reassured me that "these things happen." He asked how she was feeling, how her energy level was. "Oh she is doing great! She is climbing on the playset, jumping on the trampoline...." It was then I noticed his startled expression and he informed me he wasn't suppose to be hearing those activities performed by a little girl who has such low platelet numbers. I think that was strike 2 for us. Well, now we know. But I really had no idea we were suppose to be so careful! It's impossible to keep Clara from playing when she feels like it. It might be easier if she didn't feel like it, you know? I guess I need to adopt some helicopter parenting techniques I am not good at.

We hope that we are on target for surgery the beginning of September and head to Seattle for transplant the beginning of October, but we know how timing can change. I think that with this schedule the boys will start school back home, even though they don't want to. The time after surgery we were told can be demanding. They will go with us to Seattle and the doctor told us today to expect about 3 months for that ordeal and then we will come back to Spokane for radiation and "other stuff" till May/June. And yes, I'm trying not to think about all of this.

Meanwhile, all of us are enjoying being together. A couple of nights ago Kate and Clara fell asleep holding hands and I couldn't keep myself from tearing up at their sweetness. It was a little sign to me that what Clara needs right now is her family to be with her. I hope these days will give her the boost she needs for the trying days she has ahead of her.

Spokane just got 7 new residents

2011-07-17T23:34:00.000-07:00

Posing before church today. Clara was pretty devastated she had to stay behind.

All 7 of us are relieved to be in the same zip code again. The decision to stay together from here on out brings peace and contentment to all of us. We're all up for the adventure.

The pioneers lived in one bedroom homes without electricity and running water. Surely we can do it with both of those luxuries. My sanity may be running a little low once the kids start spending more time indoors, but we'll just continue to take it a day at a time.

Clara is on day 11 post chemo, within that 10-14 days when fevers usually come. So far so good. She is doing awesome! This morning she said to me, "I'm not gonna throw up today, mom." And she didn't. First time in a week. I think that's all behind us till the next round starts on the 26th.

She's got a week to pack in all the fun with her brothers and sister till she has to be back in the hospital. At least now they can come and visit her every day. It will be so nice.

And the saying, "absence make the heart grow fonder"? It's totally true.

HAPPY DAYS

2011-07-14T22:23:00.001-07:00

Clara was released from the hospital on Tuesday evening. She was ecstatic as you can see.

Before we left our friend Nettie brought Clara a doll that has a pseudo hickman line just like Clara. She knew just what to do. Washing the tubies with alcohol wipes, flushing the tubies with saline and drawing blood. She definitely needs to be a nurse some day.

I was a little apprehensive to bring her out of the hospital to our Spokane home because of the nausea and was really questioning it during the night Tuesday, if you can imagine. But, after resting the day away on Wednesday, she only had one episode today. This girl is amazing.

Brian, Baden and Kate came back from the lake Wednesday evening to be with us. Clara is on cloud nine. So am I. Brian and I decided that for the rest of the summer we will live in Spokane in this basement apartment all together. It's going to be...awesome! Brian will just commute. This is such a blessing to be able to stay here. The Rawlins' are complete angels.

Tomorrow morning she needs to go back in for labs, her counts should be on their way down, but based on her energy level today I wonder if they actually are! But, tomorrow is a new day...

As for me, I have been able to get out and get some exercise the past two days. After two months of sedentary living, it is invigorating.

Well, I better stop, I've done this with my phone and it is a pain. Thank you friends for your continued prayers and generosity. In the next day or two I'll post a video of how the prayers are being answered.

energizer bunny

2011-07-12T01:16:00.000-07:00

The good news is Clara finally ate some normal food today. The bad news is she wasn't able to keep any of it down. One of the chemo drugs she had this last round is a rough one. The nausea side effect can last up to five days after the last dose. She bounced back mighty quick after each episode today, and there were quite a few of them. One thing is for sure, she has got a lot of energy and loves to strut her stuff. She wouldn't take a nap till 5pm and then woke up at 7pm. So tonight, while all the other children were sleeping, Clara was roaming the halls and hanging out with her nurse friends at the nurses' station. She was off her IV for most of the day today which is probably why she didn't sleep. Tonight she will get some fluids and Zofran in hopes that she can be discharged tomorrow morning. I helped her say a prayer tonight before she went to sleep (11:30!) that she can feel better so she can leave the hospital. It was completely adorable! She really wants to get out of the "hopsbitall".

Clara talked to Brian on the phone tonight while he is single-parent-vacationing at the annual week at Priest Lake. The kids are having a blast playing with cousins, tubing and playing in the frigid water. I'm glad Clara doesn't know what she is missing out on. I hope next year Clara and I will be there and this will all be but a memory.

Determination

2011-07-11T01:06:00.000-07:00

Tonight marks 7 weeks since the beginning of Clara's fight. So far, she's winning. Clara has come so far in the last 7 weeks it's incredible. Today, as Brian and I were watching her run and play with her siblings around the hospital we both agreed that she looks and acts like she's all better and we should be able to take her home forever. If only...

The challenge this week is keeping Clara content tethered to her IV pole. The hour I've begged to keep her unhooked proves to be the happiest and fastest part of our day. She has been feeling much better than expected with this 3rd round of chemo. She just has a few sick moments each morning and then she is good to go! And that's exactly what she wants to be doing---going. We are so grateful she has that desire and ability at this point. I'm savoring these good days because I know they won't always be around.

Our Lybbert fan club, just missing Clara and I

Clara and I looked at every picture from the Hope for Clara 5k on Saturday. She loves the pictures just as much as I do. I shed many tears seeing the faces of so many who walked and ran in honor of Clara. Your support does more for Brian and I than you will ever know.

This evening while she was still unhooked before we sent off Brian and the kids she ran onto the elevator after someone got off. She was determined to push the button and go down the elevator to the car and didn't want me anywhere near her. Maybe she thinks I'm holding her captive. She put up an impressive toddler fight when I picked her up and brought her back to the room. The whole floor know how mad she was. Yes, she is definitely feeling better!

very determined

Since tonight is Clara's last dose of chemo the plan all along was for her to be discharged Monday. The only problem is, she isn't eating. At all. Besides the handful of blueberries she had today she hasn't eaten for several days. Her beloved sippy cup of milk that has always pulled us through is being refused. Tonight she took a sip and said, "Milk is gross!" She's thriving on IV fluids because she's maintaining her weight. Tomorrow morning the doctor decided to take her off of the fluids to see if she will have a desire to eat and drink. Hopefully her appetite comes back so we can be out of here until the next go round at the end of the month. Afterall, home is the best place to heal.

Cancer, go away!

2011-07-07T23:25:00.000-07:00

Clara started round 3 chemo tonight. She is on a heavier duty combo this time around. With these next few rounds of more aggressive chemo drugs I would hope that we'd start seeing more shrinkage. The scan reports from this past week are positive in that there is no new growth and some minimal decrease in neuroblastoma. We are just glad that there isn't anything new. There's no question she is getting better simply based on her ability to walk, run and jump sans any pain medicine. She is not the little girl I brought to the ER 6 1/2 weeks ago in more ways than one. Lots and lots of miracles for Clara.

I taught Clara two new words today: chemo and cancer. We talked about her chemo medicine and how it gets her cancer all gone. Then she said to me, "Cancer, go away! Cancer gross." Smart girl. She's blessed to have so many people praying for her. Because when it comes down to it, prayer is more powerful than any chemotherapy drug.

Room with a view...

2011-07-05T22:40:00.000-07:00

We are back. A day earlier than we were expecting because of some difficulties Clara had today after her 4.5 hours of sedation while she had some scans and tests, but she's is doing better. In short when she was in recovery from the anesthesia her fever quickly spiked to 105, her skin was grayish/blue and her blood pressure was too low. The rapid response team came in and did some breathing treatments for some upper respiratory congestion and stabilized her and she started showing improvement. They took her to the PICU for the afternoon and evening for observation and then we were sent to the oncology floor tonight. She is doing much better, but is very worn out as you might imagine. I attribute my ability to stay calm during the drama to my daily pleadings to my Father in Heaven for peace and comfort. Thankfully, I had a peaceful calm assurance everything would be okay. If there ever was a time to not be calm, it was today. I am grateful for the power of prayer that undoubtedly aided in helping to stabilize Clara and myself.

The plan was for the 3rd round of chemo to start tomorrow, but that is on hold till they can determine (if possible) what the cause of her unrest was.

On to happier things...we went home for the weekend! For the first time in 6 weeks we got to go home. After being home for about 1 1/2 hours Clara got a fever which we believe to have been caused by dehydration since she had gone without food and drink till 5 pm because of sedation (another loooong story). It was pretty devastating for all of us since we had to leave and take her to the local hospital ER. The children didn't want to be separated so they went with us while she got checked in and then went back home. Six hours later at 3am Brian, Clara and I were back home.

The rest of the weekend was in short, heavenly, for all of us. My sister took some family pictures for us and I think they are just perfect (especially for an amature). Even though my boys were such stinks during the photo shoot, I look at these pictures and forget how agonizing it was to get them to cooperate! It sure was hard to drive away from those faces yesterday...the hope of another visit home keeps me going. Clara was at her best all weekend soaking it all in. Pure joy! I haven't seen her so happy and active in 2 months. I just kept thinking and saying over and over, "I love my life!" I really have it so good. The bumps in the road help me to see more clearly how beautiful life is.

(tomorrow hopefully I'll know the results of all these tests she has been having)

2011-06-27T23:40:00.000-07:00

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

2011-06-27T00:02:00.000-07:00

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

2011-06-24T22:02:00.000-07:00

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”¹²here, 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.

33 days

2011-06-23T22:42:00.000-07:00

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

Sunny day in the hospital

2011-06-22T21:45:00.000-07:00

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.

Paul V. Johnson

happy day

2011-06-21T22:43:00.000-07:00

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.

so tired

2011-06-20T21:44:00.000-07:00

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.

The Bittersweetest of Father's Days

2011-06-19T22:47:00.001-07:00

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.

A good day

2011-06-17T22:55:00.000-07:00

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

2011-06-17T14:40:00.000-07:00

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.

Picture post

2011-06-16T23:21:00.000-07:00

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 :)

2011-06-15T22:17:00.000-07:00

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.

And I know it's because angels are watching over her.

The Star

2011-06-14T20:35:00.000-07:00

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.

Pressing forward

2011-06-13T23:11:00.000-07:00

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.

2 Nephi 31:20

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

Regrets?

2011-06-11T23:51:00.000-07:00

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.”

2011-06-11T18:14:00.000-07:00

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!

Life is Beautiful

2011-06-10T21:21:00.000-07:00

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.

Daddy's perspective

2011-06-09T23:10:00.000-07:00

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.

Today

2011-06-08T22:51:00.000-07:00

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.

A first time for everything

2011-06-07T20:40:00.000-07:00

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.

Featuring #1 and #5

2011-06-06T23:41:00.000-07:00

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.

L. TOM PERRY OF THE QUORUM OF THE TWELVE APOSTLES

Answered prayers

2011-06-06T01:57:00.000-07:00

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.

We were all together again

2011-06-04T22:49:00.000-07:00

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.

A favor

2011-06-03T22:08:00.000-07:00

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.

Sweetness

2011-06-02T22:31:00.000-07:00

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.

Jean A. Stevens, First Counselor in the Primary General Presidency

Heavenly helpers

2011-06-01T23:34:00.000-07:00

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.

"Fear not: for they that be with us are more than they that be with them." 2 Kings 6:16

Round 1 chemo: done!

2011-05-31T22:46:00.000-07:00

I'll have you know, I'm the only crazy lady on the floor who takes pictures of their child in the wagon, in the toy car, walking or playing. I'm still a rookie (I'm sure that's what everyone here is thinking), so maybe it'll wear off when we've spent some more time here. Until then, I'm capturing everything I can! And this picture is too sweet. Standing alone, propped up against the window since she doesn't quite have all her strength, with the IV tubing off to the side.

Some things I have learned today:

When in doubt, up the Zofran.
A slow morphine drip manages Clara's pain much better, but she doesn't sleep at all.
If Clara asks for a salad, get it to her STAT! Same goes for pizza. But keep the pink bucket close by :)
Take it a day at a time. Thinking about the next year makes me nauseous, so it's better not to.
There is no monotony in this adventure.

Round one (five days) of chemo finished today. Hip hip hooray! To celebrate the kids and Brian back home went on a bike ride. When Clara asked what they were doing I lied and told her they were cleaning. Bike rides are her most favorite thing in the world. If you look closely you will see 2 things that would be different if I were there. Chandler wouldn't have a sucker in his mouth, on his bike! And Brian wouldn't be pulling both the trailer bike and the trailer. I think they will need to bring the bikes up one of these weekends so we can take Clara for a spin.

Thank you friends for your support, prayers, love and generosity. xoxoNatasha

Peace

2011-05-31T00:07:00.000-07:00

Today was a down day for Clara. Those days are to be expected when you have High-Risk stage 4 Neuroblastoma. It makes the good days that much sweeter. Although, she did manage to crack one smile I was able to capture via the phone this morning.

She got sick a couple of times today which was just plain sad. I was hoping she might want to go on a wagon ride or try out the car again, but she wasn't feeling up to anything but rest and sleep.

It is a tender experience to see Clara's peaceful look she has while sleeping. Even as she lays awake in her bed she is content. I imagine she is in a far away place. A happy place where pain and cancer don't exist.

I took this picture tonight right after I got her cleaned up and tucked in bed again. It's hard to see her changing. There are mornings I wake up and hope that this has all been a dream and I can pick up just where I left off. Making breakfast, packing lunches, reading the scriptures as a family, saying family prayer and then sending the boys off to school for the day. I miss Clara asking for "more milk please," getting Kate's dress-up clothes down and helping Baden find his shoes.

Someday, we will return to that routine and beautiful mundane life. Until then, we will fight for Clara's life a day at a time.

"Cast thy burden upon the Lord, and he shall sustain thee" (Ps. 55:22).

Sunday's Miracle

2011-05-30T01:21:00.000-07:00

Today, many friends and family near and far joined in a day of fasting and prayer for our Clara. It has been a beautiful experience to witness the miracle that took place today. Clara woke up happy so we started off with a wagon ride for the little princess. See that smile? We started seeing it come back on Friday. We hope it doesn't go into hiding for that long ever again.

Clara has not had any desire to get out of bed and walk for a week. However, this evening, she said to me, "get down, walk." What do you say to that?! With some assistance she walked down the hall, got in the plastic coupe and we pushed her around for about 20 minutes. The nurses were cheering and asking if this was the same little girl they saw 4 days ago. An answer to prayer? Undoubtedly!

I have learned so much from Clara this week and am understanding more and more why we ought to become as a little child. She is truly submissive, meek, humble, patient, full of love, willing to submit to all things which the Lord seeth fit to inflict upon her. She doesn't say "why me" she says "thank you." Even though I brought her to the hospital where she has endured much discomfort and uncertainty when she needs comfort she still reaches out for my finger to grasp. Whenever she is awake and alert she is continuously inquiring about what a cousin or sibling is doing, always looking outward. There is no doubt she is being comforted by angels in heaven and knows that this is but a small moment.

Like the mortal life of which they are a part, adversities are temporary. What is permanent is what we become by the way we react to them. Dallin H Oaks Of the Quorum of the Twelve Apostles

Saturday- A Glimpse of Heaven

2011-05-29T23:40:00.000-07:00

It was such a happy reunion yesterday. Clara was very solemn at first, I think she thought she was dreaming. Then all of a sudden, she perked up and we saw a side of her that hasn't been present in this little hospital room all week. Pure joy! I can't believe we didn't get a picture of Brian and I as well with the children. It was a happy day. Clara had enough desire and energy to go on her first wagon ride around the halls. The kids discovered "the drawer" stocked by friends and family with goodies they don't find in the pantry at home :) It was a heavenly reunion, one I hope we can have often.

We thought Clara could use some more Kate time so she stayed in Spokane while the boys went back home last night. In her true Kate style ran around the floor greeting other children in their rooms, zooming around in the toy car and generally acting like she owned the place.

She and Brian went home tonight. Brian is getting a cold and needed to go home, much to our dismay.

I had hoped that Clara and I might be able to return home for a day or two this week, after this first round of chemo was finished, but the oncologist on call this morning didn't think that would be a good idea. A little disappointing, yes, but we will survive this "new normal." As I hugged Brian goodbye tonight I told him, "we can do this". "Yes we can," he agreed. And it because of every note, text, email, phone call and visit we have received. I can't express this enough, the support, prayers, and love we feel from everyone is comforting and appreciated. We truly feel you are bearing our burdens. Thank you.

One week down, many more to go.

One day at a time

2011-05-27T23:30:00.000-07:00

We are quite enamored by Clara's new sleeping position.

I'm a little weary tonight. Yesterday was such a happy day. We figured out why that was. We didn't talk to the doctor yesterday. No news is good news. Today we spoke with him twice. He really is such a great man and we are grateful for his kindness and expertise. I have picked up on the facial expressions that signal he's about to deliver some not so pleasant news. I don't think he really liked telling us that after her 6 rounds of chemotherapy and surgery we will go to Seattle for 2 solid 32-50 day stays while they perform the stem cell transplant. We didn't like hearing it either. But, we accept it and will do whatever we need to do to help our Clara get better.

This isn't a disease of convenience. There are millions of people who know this better than we do. One day at a time, is our new motto. To go beyond that is too overwhelming. I'm learning lessons of patience and submitting to the will of the Lord. It is impossible to ignore His hand in preparing me for this trial and in strengthening me throughout it. He knows me. He knows Clara. He knows you. His plan is perfect and His love is for all.

“No pain that we suffer, no trial that we experience is wasted. It ministers to our education, to the development of such qualities as patience, faith, fortitude, and humility. … It is through sorrow and suffering, toil and tribulation, that we gain the education that we come here to acquire."

Orson F Whitney

Tender Mercies

2011-05-26T21:25:00.000-07:00

Oh, how I love that cheesy smile! This picture was taken earlier this month on Mother's Day at my parents' home. Just a couple of days after she started not feeling well, though by this snapshot you'd never know it! I've been missing my Clara and those smiley cheeks. This morning at 3 am she woke up and wanted to talk. We rushed to her side to talk with her. A priceless gift for parents who have been waiting for a glimpse to the return of their once energetic toddler. For 20 minutes she jabbered on about her brothers and sister, the doctors, and repeated what seemed like a 1000 times "thank you, welcome". We think she was expressing her gratitude to all the people who are pulling for her. Another tender mercy of the Lord.

Today has really been so awesome! Some highlights:

normal temperatures
nibbling on real food
up on her hands and knees
wants us to hold her
lots of talking
wants to see pictures of all her siblings
chewing gum
telling us she wants to go home in the blue car
and asked to watch "mouse" (perfect timing for the angels that gifted them to her today)

We captured some of her sweetness this evening and we want to share with you. Your prayers are making this possible. Thank you.

...I testify the tender mercies of the Lord are real and that they do not occur randomly or merely by coincidence. Often, the Lord’s timing of His tender mercies helps us to both discern and acknowledge them.

DAVID A. BEDNAR OF THE QUORUM OF THE TWELVE APOSTLES

Faith not fear!

2011-05-25T21:46:00.000-07:00

Clara had a slew of procedures and scans today. Thankfully, she was under general anesthesia during it all so she won't remember a thing. Because of the aggressive nature of the neuroblastoma, they started radiation today. These radiation treatments are targeted at cancer that is threatening her optical nerve. They feel that it went well and are going to follow up with 2 more treatments Thursday and Friday morning. Following the radiation they performed the MIBG. The doctor discussed the results of the scan with us this evening and confirmed what we were already expecting. The cancer has spread on the bones throughout her body. This explains the pain that she has been experiencing the past 3 weeks. They suspect it has only been the last month that this has all started.

They took her to the OR following the MIBG to get the bone marrow sample, insert the central line and get a biopsy of the large mass on her adrenal gland. The surgeon said that it all went well. They are unable to remove the full tumor because it is wrapped around so many vital parts, including blood vessels that feed the kidneys. The oncologist explained that this is a very aggressive cancer. Fortunately some fast growing cancers also disappear quickly with the right treatment.

They are just about finished creating the treatment program, but in all likelihood, Clara will receive 6 3-week cycles of chemotherapy, in addition to the concurrent radiation treatments that will probably last for 2 1/2 to 3 weeks. She will also need a bone marrow transplant, a stem cell transplant, and possibly a second bone marrow transplant. After this first round of treatments, which they refer to as induction, she will start consolidation, wherein they attempt to get the cancer cells that are floating around in the body but that don't show up in scans. This is where the second bone marrow transplant comes in. She will likely lose her hair and experience months of nausea and discomfort, most of which can be controlled through medication. There will be times when we may be able to bring her home over the next 18 weeks, but we won't know for certain until she is well into the therapy.

This is all very overwhelming, but we feel a calm assurance that the Lord's hand is in this. We have faith that God has a plan for each of us and we hope that His will is for Clara to make it through this ordeal. We know that we cannot change God's will, and we pray for the strength and courage to accept it, whatever that may mean for Clara and our family. We are sincerely grateful for those who are sharing this experience with us, praying for our sweet daughter and her caretakers, and contributing in any way to alleviating the burdens that we feel. We hope that we are all able to learn from this trial and that we each become better people and better followers of Jesus Christ as he carries us through this time of sorrow and uncertainty.

"Hope . . . is like the beam of sunlight rising up and above the horizon of our present circumstances. It pierces the darkness with a brilliant dawn. It encourages and inspires us to place our trust in the loving care of an eternal Heavenly Father.”
–President Dieter F. Uchtdorf

You raise me up!

2011-05-24T21:15:00.000-07:00

One of the first days Clara started not feeling well, about 3 weeks ago, she was laying on the couch and asked for me to put "church song" on the TV. After some trial and error I realized what she meant. Music and the Spoken Word. I can't tell you how many times she's sat and watched the slew of episodes recorded on the DVR.

This first one we watched, Standing on Shoulders, the men sang "You Raise Me Up," I was overcome with the power and spirit of the song and replayed it at least 5 times. Little did I know at the time, how it would apply to my life in the future. As the news has been spread and so many people, some whom I don't even know, have reached out, offered prayers on our behalf, and given so much, the words to that song have come to my mind hundreds of times. You raise me up! All of you, in a powerful and comforting way. We will forever be indebted to you. We have learned much of what being Christlike means and want to be better because of your examples.

I wish you all could hear her sweet and tender thank-yous that she often expresses to us and those treating her. Share in the small moments when we see glimpses of the Clara who wasn't sick. Witness her calm and peaceful disposition despite the disease that is threatening her fragile body. These are the tender mercies that we are blessed with and are a witness to us of a loving Heavenly Father who is mindful of us and Clara amidst this trial.

We have great hope for Clara. The miracles of modern medicine, the talent of doctors and the prayers and faith of everyone will help our Clara to be well again. While we wouldn't choose to have this trial, we know there are lessons and experiences that will be for our good.

xoxoNatasha

So far this summer

2010-06-26T09:27:00.000-07:00

we've been doing a whole lotta whatever the heck we want.

It's been perfect.

no schedule.

no pick ups.

no drop offs.

no lessons.

no practices.

Just the way summer should be.  

This is what makes summer so great.

2010-06-18T09:18:00.000-07:00

It's 9 o'clock in the morning and instead of sitting at a desk you are pushing your little sisters around in boxes around the house.

Fave mobile pic of the week.

2010-06-11T08:51:00.000-07:00

We think that Clara folding her arms for prayer is adorable. And when she bows her head and mumbles a "prayer," well, that's about the cutest thing we've ever seen. I think you'd agree.

not much to do on rainy days like this.

2010-05-28T10:45:00.000-07:00

Except look out the window watching it fall and play kissy face.

on my mind

2010-05-24T15:14:00.000-07:00

Life is busy. Five little bodies are keeping me occupied. Some moments I enjoy the hectic life and other times I'm ready to pull my hair out. I have been thinking a lot about my priorities. Mainly, trying to ignore the things that pull me away from what's really important, the here and now. I am trying to focus on making memories and enjoying the spontaneity of life. Relishing in motherhood. Crumbs, laundry, diapers, all of it! Oh yes, it is sometimes easier said than done, but you already knew that.

Saturday

2010-05-23T09:06:00.000-07:00

Earlier in the week Baden declared that Saturday would be "family fun day". Even though we mowed, weeded and cleaned, it was OK because it was family fun day and we did everything together. The day ended with a long (and breezy) bike ride and pizza. I need to savor days like this because before I know it they'll be planning prom dates and scary stuff like that. I think every Saturday will be family fun day.

The great escape.

2010-05-18T21:35:00.000-07:00

I looked out my kitchen window Saturday afternoon and I noticed Chandler digging dirt in the garden area. Then I saw him slip under the fence. I hurried and grabbed my camera and am I ever glad I did! This sequence has got to be the best I've ever captured. His facial expressions are not to be beat. First, the cautious I hope mom and dad aren't around, the I'm safe, the dang I've been caught and I'll be busted and finally the I'm probably going to be OK because mom is taking pictures and smiling. Now, I know that it is common for people's dogs to dig a hole under the fence to escape, but it never occurred to me that children might attempt the same. Is life really that confining around here? Is everyone's Saturdays this entertaining?

It was a good day.

2010-05-12T19:22:00.000-07:00

WHO BREAKS OUT THE SLIP AND SLIDE IN MAY WHEN IT'S 75 DEGREES OUTSIDE?

WE DO!

Happiness is found in the water and sun for my kids.

DINING AL FRESCO? OUR FAVORITE!

The clean-up that awaits my better half upon his return from church meetings. I love you dear :)

Kate's favorites.

2010-05-11T15:12:00.000-07:00

Kate and I were enjoying this exceptionally beautiful day in the backyard this afternoon on the swings. I spontaneously started asking her favorite things questions and thought I'd better keep note of them.

What is your favorite thing to do? PLAY
What is your favorite song? I AM A CHILD OF GOD
What is your favorite food? SOUP
What is your favorite thing to wear? CLOTHES
What is your favorite smell? FOOD
What is your favorite show? I LOVE LUCY
What is your favorite color? PINK
What is your favorite thing about your world? TREES, I LOVE THEM. (she's a tree hugger and I didn't even know it!)

She was quick to answer as if she'd already thought of the answers to these deep questions...Very enlightening!

mommy & girls

2010-05-10T20:35:00.000-07:00

It wasn't too long ago I didn't think I'd ever have any daughters. And now I have two. It makes me so happy. Oh, so happy. I love having boys, but little girls are so fun and they don't mind putting their church dress back on and posing for a picture with their momma.

2010-05-07T13:49:00.000-07:00

I shared my favorite Mother's Day gift over on my sister's blog today. Click on over here to read all about it. She's had guest bloggers sharing Mother's Day gift ideas all week. When you take a look at the line-up she's had you might wonder how I got roped into it. Maybe she was desperate, or maybe she saved the best for last. I'll never tell.

Faking it.

2010-05-05T10:48:00.000-07:00

Chandler stayed home from school today with a "stomach ache". By about 9:00 a.m. I had him all figured out. I called his bluff and told him that he can't fool me. And then, he smiled. What's a mother to do? Well, this mother is going to let him finish that book that I am sure brought on the sudden illness.

We'll call it "Spring Fever."

(notice the bowl...I gave him that when I still thought he was legitimately sick)

Mini-golf

2010-04-30T14:26:00.000-07:00

We'll have to make this one of those "don't tell Carson and Chandler you got to do this" secrets...or daddy for that matter.

11 years

2010-04-29T19:07:00.000-07:00

Brian and I were married 11 years ago today. Instead of lounging on a sandy beach miles from here, we are doing the same old. The same old that makes up this crazy, chaotic and happy life we both wouldn't trade for anything. Lucky us. Eleven years down eternity to go. Happy anniversary darling.

Nine

2010-04-28T21:03:00.000-07:00

(my laptop cord is on the blitz, so this iphone post/pic will have to do)

All of this children growing up on me business has got to stop! Chandler turned nine today and is starting to show signs that he is growing up. As we were walking into Applebees this afternoon he said, "Mom, will you just promise me one thing? Don't tell them it's my birthday." I kept my promise.

Tonight I made his regular requested birthday dinner: sweet and sour chicken and chocolate cake. Afterwards, we all said some things we like about our Chan-man. Grandpa Woodward said it best; "we can always tell when Chandler is happy, (then a little under his breath) and when he's not." He's been that way since day one!

Hard to believe we'll be sending him off on his mission in a short 10 years. I just hope the next 9 years slows down a little. We love our Chandler and all that personality that has kept us entertained all these years.