Tuesday, May 31, 2011

Round 1 chemo: done!

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:
  1. When in doubt, up the Zofran.
  2. A slow morphine drip manages Clara's pain much better, but she doesn't sleep at all.
  3. If Clara asks for a salad, get it to her STAT! Same goes for pizza. But keep the pink bucket close by :)
  4. Take it a day at a time. Thinking about the next year makes me nauseous, so it's better not to.
  5. 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


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).

Monday, May 30, 2011

Sunday's Miracle

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

Sunday, May 29, 2011

Saturday- A Glimpse of Heaven

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. 

Friday, May 27, 2011

One day at a time

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." 

Thursday, May 26, 2011

Tender Mercies

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.   

Wednesday, May 25, 2011

Faith not fear!

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

Tuesday, May 24, 2011

You raise me up!

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.