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nd we are ready to have her free of pain and distress it s more than our hearts can bear i don t understand how or why she is still able to endure but the pain in her face will surely be with me as long as i live how i long for the day when i am reunited with a sweet happy and twinkle eyed 3 year old girl i really do believe when i see her in heaven she will be 3 i can t wait the medical professionals and her family are stumped she s still hanging on so many times we ve been prepared for her passing the signs are present and yet we wake up every morning and she s still there beside us our clara has always been a fighter and so we aren t completely surprised she is fighting to her death with all that is raging in her body she has several lumps on her head that are only getting bigger just this morning we discovered many lumps in her abdomen and with her yellowed skin we can only guess it means a failing or affected liver all day and night long she wants us to rub her tummy arm or leg she is thin and frail every bone in her body is visible walking is painful and at this point she can only handle a few steps a day two weeks ago she reached the point of being unable stand up by herself when she bends over to pick something up stuck in a bent position she refuses to take oral pain meds and the patch is only taking the edge off her pain she won t even look at herself in the mirror anymore the sadness in her eyes is heart breaking this has been and continues to be a trial of my faith amidst the tiring and trying days of watching clara suffer and caring for her there have been many tender mercies i know god is there his love is abundant he is hearing my pleadings to release her we are being sustained and strengthened in our refiner s fire and it s true life isn t fair but i never thought it was the atonement of jesus christ is real i know it is through our faith in him and the infinite atonement that we are able to endure if you pray for clara join with us in praying for her release from her pain that she may soon find rest in heaven thank you from the bottom of our hearts posted by natasha at 7 31 pm 43 comments email this blogthis share to x share to facebook share to pinterest thursday august 2 2012 holding on clara is still holding on but with less energy than she has had in the last month and a half we wish she could just let go and be free she is peaceful though and the miracle of modern medicine is keeping her comfortable but a part of her is missing and we hope she will soon be whole again in a rare moment today when she was coherent i told her it is okay you can go to heaven we will be all right she whispered not yet i want to stay here with you guys the wisdom in her soul is greater than i could ever hope to understand in this life she will go when she is ready meanwhile our family is blessed by the love support and charity of so many we are learning more and more what we can do and need to do to be more christlike by the examples all around us thank you thank you a million times over posted by natasha at 9 14 pm 35 comments email this blogthis share to x share to facebook share to pinterest wednesday july 11 2012 everything is going to be okay words have failed me as i have tried a few times to start a post the last couple of weeks it s been two weeks since we learned for certain that clara s cancer came back and was spreading it all happened so quickly overnight it seems one day she is prancing around riding her bike jumping on the trampoline and the next day she s in pain and wants to sleep all day there is no more fighting she has already fought the good fight and in the words of our sweet clara herself heaven is too far away i want jesus to pick me up at the tender age of three years old she is wise beyond her years and has always known what she wants the peace we feel surpasses our understanding but is undeniable this is the right thing to do and we will live looking forward to our heavenly reunion all the days of our lives thank you for your love kindness and generosity as we have waded through this trial your prayers most certainly have sustained us the miracle we were blessed with having 8 months of being together at home with a happy and full of life clara has been better than we could have hoped we can t wait to share eternity together everything is going to be okay posted by natasha at 9 13 am 20 comments email this blogthis share to x share to facebook share to pinterest wednesday may 23 2012 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 posted by natasha at 3 56 pm 10 comments email this blogthis share to x share to facebook share to pinterest monday may 21 2012 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 posted using blogpress from my ipad posted by brian at 11 17 pm 1 comment email this blogthis share to x share to facebook share to pinterest wednesday february 29 2012 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 posted by natasha at 8 23 pm 14 comments email this blogthis share to x share to facebook share to pinterest friday february 24 2012 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 posted by natasha at 10 58 pm 7 comments email this blogthis share to x share to facebook share to pinterest wednesday january 25 2012 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 a power b all wisdom and all understanding he comprehendeth all things and he is a c merciful being even unto salvation to those who will repent and believe on his name 36 now if this is a boasting 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 b branch of the tree of israel and has been c lost from its body in a strange land yea i say blessed be the name of my god who has been mindful of us d wanderers in a strange land 37 now my brethren we see that god is a mindful of every b people 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 circle...