One year later.

This morning I had an event reminder on my phone: Clara’s Neuroblastoma diagnosis 5:00 am. The emotions and feelings I had 1 year ago have come flooding back to me this week. The anxiety, the uncertainty the TEARS! Those first weeks my prayers were filled with fervent pleadings to my Heavenly Father to take her back to Him and spare her further discomfort and pain if it was His will. I suppose those words come easily to a mother whose heart is breaking watching her 2 year old so sick in a hospital bed. My prayers are now filled with gratitude for her returned health and strength. 365 days ago I couldn’t imagine life for our family being what it is today. We are blessed, abundantly blessed! Clara is our daily reminder of God’s love and grandeur.  

And the answer to the question I get all the time: how is Clara? Clara is doing great. She doesn’t stop and especially not for naps which means at the end of the day I’m counting down the minutes till bedtime. She’s the same persistent and determined little girl who raged through chemo, radiation and weeks in the hospital. My favorite thing ever is when she gets up a little too early in the morning and comes in to snuggle up next to me. She wraps her arms around my neck, closes her eyes tight and her trademark cheesy grin spreads across her face. A few minutes later she falls back asleep. I love her sweetness. It definitely makes up for the “what will she wear” battles every day. 

We are still cautious, paranoid at times maybe, especially when she manifests symptoms we have been told to watch for which mimic those symptoms that come with an ordinary childhood cold or flu. I don’t know if we will ever stop worrying and wondering. It’s always in the back of our mind that it will come back. We’ve been told it will, but we also know medical research doesn’t have all the answers and sometimes God’s Will defies research. I can’t help but hug and kiss Clara every chance I get. With such a bleak diagnosis just a year ago I didn’t know if she’d live to see her 3rd birthday. We’ve been given the greatest gift, more time with Clara. We hope it is a lifetime!

Easter

3rd birthday

Mother's Day

Today!

Has it really been a year?

For obvious reasons this time of year causes me a lot of anxiety. Memories of the past 12 months come flooding back with the slightest reminder of what we've been through. For the first few months after we brought Clara home from Spokane, I would religiously read any news article on neuroblastoma that I could find. Now it actually makes me ill just to see the word. I shudder at the sound of "cancer" just like I do when I hear an inappropriate word on tv.

All of this makes me wonder how in the world we managed to survive the past year. The scriptures provide the answers to all of life's important questions:

. . . remember, after ye are reconciled unto God, that it is only in and through the grace of God that ye are saved. (Book of Mormon, 2 Nephi, Chapter 10)

It is only because of God and the atonement of Jesus Christ that we were able to make it through that awful period. I feel like we have all emerged stronger, yet gentler from this experience. Tonight for family home evening we talked with the children about the principle of compensation, which was a little difficult for some of the younger ones to grasp.

The Lord compensates the faithful for every loss. That which is taken away from those who love the Lord will be added unto them in His own way. While it may not come at the time we desire, the faithful will know that every tear today will eventually be returned a hundredfold with tears of rejoicing and gratitude. (2008 October General Conference, Come What May, and Love It, Sat. Afternoon Session - Joseph B. Wirthlin)

We are so blessed to have Clara with us. We all continue to give thanks in prayer that we are together and that Clara has been blessed with a miracle. I am continually amazed and in awe at how good the Lord has been to our family. We recently moved to a new (for us) home in a neighborhood overflowing with children, which is a big change from anywhere else we've ever lived. I get home from work each day to a driveway filled with bikes and sounds of children playing and laughing. Noticeably absent are the sounds of any children doing homework, however. Last night when we knelt for family prayer, Carson expressed gratitude for our neighbors and friends. He has truly compensated us for lost time.

What does the future hold for us and for Clara? We don't know. The doctors have not (and likely will not) give her a clean bill of health. Her blind right eye appears to be making some progress. At the eye doctor last week we found that her right eye vision is 20/6000. Not exactly eagle eyes, but it's a start. She spends most of her days floating between our house and the neighbors, usually in a swimsuit, regardless of outside temperatures. Her hair is growing back, much thicker and with more texture than before chemo. All of this just reaffirms in my mind that no matter what trials life throws at us, life is good and we are richly blessed.


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Out of the mouth of a six year old.

Tonight before family prayer I asked all the kids how they have seen the hand of the Lord in their life today. Baden shared this experience from his personal scripture reading. For a minute I forgot he was six years old. I had him repeat his experience again so I could have it on video.

9 months

Time has flown! The saying: time flies when you're having fun, is absolutely true. The last 4 months have gone so much faster than the first 4 months after Clara's diagnosis. So here is my monthly update because we are too busy to do much more than that. Yes, the pictures are mostly of Clara and Kate. My two girls are my only willing subjects, plus they are home with me the most.

Clara is practically perfect in every way. She's also perfectly two. There isn't any real hint she is almost three. I have to keep reminding myself that for about 6 months she had quite a bit going on and so she has some things to catch up on. Try as I may, potty-training can wait I suppose :) She's home, happy and seems perfectly healthy and that's all that matters!

We love her hair! So stylish and so soft.  

I thought it was so funny when I caught her on the cushion-less couch she had just been jumping on thumbing through The Entitlement Trap. Really, the picture says it all. 

Aspiring pianists. One of their favorite activities.

Baden reading Kate The Old Testament reader before bed. I'm so happy I don't have to miss out seeing moments like this.

When the mail comes you can find them both in this spot. Don't you love the wedding dress-up?

LIVESTRONG PINK! Her favorite shirt. 




We are so grateful she is still living strong. So thankful. 


Clara had a doctor's visit last week here with one of the oncologists from Spokane and she thought Clara looked, sounded and felt great. We couldn't agree more. In two more months we will have another follow-up with Dr. I, he also wanted to get some blood work done the week before to go over. We will pray all will continue to be well with our little miracle.  

Eight months later.

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.

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

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.

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.