Getting ports changed and some GREAT news!

Daner getting his lead ports changed

Update from his Aunt Arianne:
We got some of the best news ever today!!! Daner has responded really well to the first round of chemo and he got his third zero read result back today!  No more lumbar punctures for Daner.  Hip hip horray!  Also his immune system is testing well (still really low but going up) and it looks like he might be able to come home for a week.  This has been the best day ever!

Ouch!

Getting ready to go HOME!!!!

Yeah!  Daner is HOME!  Can't believe it.  Home for a whole week!  We are SOOOOO happy.

Dane with Auntie Britt

Monday, April 25

Mom left Daner this morning for about an hour to pick up Aunt Britt from the airport.  Daner was really happy to see Aunt Brittney and she and Mom and a friend hung out with Daner all morning and afternoon.  Daner felt very weak and tired.  The doctors came in and had wonderful news for Daner.  They told him in the last three days his immune system was building back up and his immune system had gone from a 25 to a 44 to a 75.  This was a great sign and if Daner can keeps his numbers climbing, remain fever free, and eat and drink a lot every day, he could go home in a couple of days!!  WOW.  Some of that is out of his hands, but he can manage the eating and drinking.  Daner drank 3 carnation meals, half a chipotle naked burrito, and some root beer!  Way to go Dane.  (I think he would like to get out of this place.)  They did tell him it would only be for a few days and then they would start the second round of his chemo.  The doctor told us that this is really rapid progress.  Daner hung out with Dad this afternoon and played cards.  Dad left and Daner braved the time away by himself for 2 hours- another big step for him.  Mom came back and hung out with him, he had to have his port dressing changed, which makes him very nervous, but his nurse Nick was awesome and talked him through the change.  We are so amazed at his progress and know through the faith and prayers of our family, friends and ourselves that Heavenly Father hears our pleas and grants us blessings every day!

A visit from the Easter Bunny

He brought a rabbit for Daner

Sunday, April 24
We had an unusually slow Easter morning.  I brought Daner some yummy Easter breakfast, which didn't really taste good to him at all!  It took Daner a bit to want to get out of bed, but I reminded him he had Easter eggs to find (in his room-haha) and he had to find his Easter basket (also in his tiny room), it was quite comical!  He asked me how many eggs were hiding and I told him 100.  He said "for one kid?, "  I told him , "no, like 30,"  he was really excited about that and I wished I had hidden more!  I told him 15 of them were in a little bag from some of his friends and we thought they were really fun.  They had things in them like little fuzzy chicks and gummy egg yolks and gummy Smurfs.  We laughed together.  Then he found the other 15 hiding in his little room.  He thought it was really fun finding the eggs in a hospital room!  Then he really was puzzled that he couldn't find his basket!  He looked and looked and looked and then finally found it under a blanket.  After he enjoyed his Easter hunt we watched some Easter Resurrection videos on the Mormon channel.  We talked about what we celebrate at Easter and why it is so important.  Daner had some special visits from a friend who taught him how to make origami cranes to bring him good luck and a visit from his great Aunt Sandi and Uncle Scott.  We found out that a sickness was going around and Dane's family would be unable to celebrate Easter with their grandparents and cousins and we felt really bad for them.  We also found out that Dad couldn't come to the hospital with Dane's brother and sisters because of his chest cold and we were disappointed about that as well.  The doctors visited Daner today and told us how important it is for Dane to stay far far away from any sickness and colds because he has no immune system and will absolutely catch anything and everything that is in the air he breathes.  This made us so nervous.  Daner and I snuggled all afternoon and evening and enjoyed the peaceful calm that comes on the 7th floor during holidays.  Everyone is nestled in to their rooms away from the outside world trying to stay safe and protected from the outside germs that can be so fatal to their little bodies.  It was so intensely quiet, so we did the same and stayed tucked away enjoying our time together on this special Easter day.  Dad was having a hard time not seeing his little son so he sanitized his hands a million times, masked up and didn't touch a thing and visited with Dane for a few short minutes, so he could tell him he loved him and wish him an Easter blessing.

Daner checking out his Easter basket

Easter visit from great Uncle Scott and great Aunt Sandi

Saturday

Dane loves his "smooth" blanket and VA tees from cousin Jason and Shannon

It's a Lego Day!

Saturday, April 23
Dane slept in today until noon!  The dose of benedryl he received at 4am for nausea really knocked him out.  Dad was going to bring his brother and sisters in this morning to color Easter eggs in his room because he is still on isolation and can't leave the room, but because Daner slept in and Dane's dad has a chest cold and is unable to visit, we put the egg dying on hold.  The doctors came and saw Dane today and were really concerned because he has lost so much weight.  They told him they will start giving him lipid transfusions (fat) and lectured him on eating or drinking carnation 3 times a day.  Dane was really nauseated so the nurse gave him zofran so he wouldn't be sleepy.  Dane read to me from his 100 cupboards book and did some journaling on things he likes and doesn't like.  Some of the things he likes are: playing games, playing on his IPAD, watching movies late at night and eating jalapeno popcorn.  Things he doesn't like right now are: sitting in bed all day, taking walks on the other floors, eating and drinking, finding out he can't be asleep every time he has the needles changed on his port.  After he did a little thinking and reading I let him relax and watch a movie while he built some legos (also a thinking activity-yeah!)  Halee came to hang out with Dane..  They dyed Easter eggs and had a lot of fun.  Mom and Dad were able to go out for a bit to get some Easter things together.  Later in the night, Halee went home with Dad and Mom stayed and snuggled Daner for a bit.  This is our favorite time of the day!

Stole of gratitude

Yesterday (April 22, 2011) was mine and my wife, Katie's, graduation from BYU.  One of the things that people wear at graduation day is called a stole of gratitude.  This is an optional thing that graduates wear to give to someone of their choice to thank them for support, service, love, financial support etc.  I wanted to give mine to Dane to thank him for what a great nephew he has been to me, what a great cousin and example he is to my kids, and to honor him as he is going through this battle.
As we have been celebrating the last couple of days, we have kept Daner close in our hearts and have been continually reminded of his sweet spirit and character.  My mom has told us of the conversations they have had recently.  Dane has been asking Nana what an engineer does, and why would someone pay for more school etc.  Daner - I can't wait to get out there next week and I will answer all those questions for ya buddy.
I had the message Live STRONG, Be STRONG, Fight STRONG for Daner embroidered on my stole for you.  There were many people that asked what that was for, and I told them what a strong kid you are and the battle you are going through.  They all wished you the best and were touched by your strength and character through all of this.  I want you to know, Daner, that I too draw so much strength from you!  Thank you for being the best little nephew, and cousin, and example and for being 'Daner' through it all.  I love you so much bud!

Love,
Kasey

Hopefully Dane's last trip to propafal clinic this round

Friday, April 22
Today was a much slower paced day for Dane.  He spent the morning with his dad.  They met with his hospital teacher who will work with him on his school work.  I am hoping she will be diligent in enforcing his school work because his dad and I have to be the cheerleaders in so many other areas.  The doctors came and told Dad that Daner had an infection, which was causing his loose bowls, but because of it, they would start him on yet another antibiotic and he will be on isolation for 7-10 days. This means he won't be able to leave the room except for his surgical procedures.  We were uneasy about how this might affect his phsyche, but know with the help of his parents, family and friends we can do a little entertaining.  When I arrived he was getting ready to go down for hopefully his last lumbar puncture this round of chemo.  He was unable to eat and drink all morning because of his surgery and  he saw a commercial for donuts and really wanted some, so on my way to the hospital I stopped and bought him some krispy kreme for after his surgery.  Dad and I walked him down feeling really uneasy about his lp this time.  The nurses were scattering around gathering things they had forgotten and questioning what I had told them he was scheduled for and it left us not feeling so sure about things.  An hour or so later we came back to recovery and he did really well but was still totally out.  He woke, barely, so tired that the nurse in the clinic wheeled him down in his surgical bed.  Dad moved him from that bed to his room bed and he layed still for hours really struggling to get his energy back.  After many hours passed he finally felt up to his donuts and ever so slowly ate them.  His nurses were quite proud of his accomplishment.  He felt so tired and was frustrated that he couldn't sleep, so at eight I told him to listen to his body and get some rest.  His tummy was unsettled and not feeling to great so the nurse gave him some benedryl and off to sleep he went.  I can't help to stare at his sweet little body and worry about his temperature.  He pleaded to feel better and requested not to get so hot and sweaty from his fever and I only wish I could grant such simple requests.  Hopefully tomorrow will bring a more peaceful day for him.

Virginia is for lovers?.... I mean BUZZERS.....

Aunt Brittney in Virginia organized, "Buzz Cuts FOR DANER," at Daner's great grandmothers home to raise money and show support! It was a huge success and the trend is growing fast... every kid wants a buzz cut! Here's just a few of the participants!

 Cousin Renn with Aunt Brittney

 Cousin Jax

 Dane's Grandad

 Letting balloon go in honor of Dane!

Daner's extended family in front of Mamaw's mantel.

 Gold Family

Uncle Kevin the first of Jamie's family to begin to BUZZ!

Special thanks to Rachel, Brittney, & Shannon from Salon Cielo
for allowing this event to happen!

Exciting News!

New lids for Dane from his sister Mikayla

Playing games with the Smith's

Watching Hawaii 5 0 with the sistas

Update from Daner's aunt:
Some good news today!  I don't know the exact names of everything, but Daner has had two LP with a zero count of Leukemia in his spine!!  This is such great news because the last LP we were told there was still a small percentage in there and he has to have 3 zero counts to be done with the lps for this session.  So today we went from none to two just like that! Very exciting news!

These pictures are so wonderful of Daner spending some quality time with two of his sisters.  They sure love him a ton!

Mom's update for Wednesday, April 20

Daner had a great night and was able to rest easier after the nurse took his temperature in the early morning and his fever had finally subsided.  I came just after he had woken and was able to visit with Nana about the night and her experience with the more serious doctor.  I was so relieved to know that the lp procedures were successful and killing the leukemia in his spine.  On Friday, Dane will go for hopefully his last lp in this session of treatment as well as a bone marrow extraction to see if the 10 days of chemo were successful as well.  Halee had the day off from middle school and she wanted to spend it with her brother Dane, so they immediately embraced and were on the IPAD faster than you could say it's name. They were really cute all morning together figuring out and playing with new apps.  Our neighbors, the Smiths came to visit and play.  Trevor told Daner some funny Easter jokes like "why did the bald man put a bunny on his head? (because he needed the hare)  and "what do you call a rabbit with fleas?  (bugs bunny).  They played UNO and another card game and had a lot of fun with him.  The distractions are really good, mixes up the daily schedule and makes the time go by so much faster.  Dad and Mikayla came for the afternoon and it was so enjoyable to be together as part of our family with Dane and just getting to hang out with each other.  Sweet Dane was having a hard time though.  He didn't want to be together in a hospital hooked up to fluids without his hair.  He had realized that he was forgetting the little details about his room and home and had even forgotten he had a cat!  This was emotionally challenging for him and we told him it was okay to be upset, disappointed, and mad at times.  Halee and Mikayla were very sweet and nurturing to Dane and did cute things like snuggling with him, decorating his large picture window with drawings of our family, quotes, and words of strength from them.  We all took Dane for a walk on different floors of the hospital and ended with Daner going to the cafeteria for a chocolate milk.  Such milestones to report back to the nurses that he exercised and drank 7 ounces.  Dad left with the girls and Daner and I got some great one on one time.  He talked with me about being disappointed in himself for feeling down while his dad was here and I reassured him it was fine.  Daner had a platelet transfusion and received some antibiotics.  He was super chatty all night and I was so impressed by all his conversations.  What a blessing to see the energy for life again.  He finally wanted to eat, jalapeno cheddar popcorn,so we went for a walk to the cafeteria.  He impressed himself by going on so many walks today.  Of course, when we got to the cafeteria, the alarms started going off on his iv pole and the line to check out was super long.  Dane got a little panicky, but I had him sit and relax while I took care of paying.  We hurried back upstairs and the nurse rushed in to see why the alarms were going crazy.  Well, his tubing had just gotten kinked and needed to be straightend out.  Oh my, all that worrying for nothing.  Daner continued to be chatty and holding on to our time together in the early morning hour.  So precious I just never have the heart to turn him off and make him go to sleep.  But, we finally did and we thanked our God for days like these.

Sleep over with Nana

Nana came down to the hospital to sleep with Daner on Tuesday night.  What a wonderful Nana!  She loves to be with Daner and was so happy to come be with him and take care of him.  Also so wonderful so that Dane and Jamie could have a night where they were both home to be with their other kiddos. 

Update from Daner's dad:
Dane Woke up to the very strict instructions "no food no liquids". Today he had to be put under Anaesthesia for yet another lumbar puncture. For those of you who don't know what a lumbar puncture or spinal tap is, it is when they go into his spine with a needle and extract fluid and at the sometime they inject a type of chemo to kill any other leukemia cells that maybe "hiding out" in there. The chemo treatments he has been receiving don't or I should say can't pass that barrier, so they have to go in and inject it. Thank goodness for modern medicine, I guess years ago you just had to hold down your child for this type of procedure. Anyways...  he had a good morning over all, he was a little  hungry and itchy because of the hair that he continues to lose and his bed was full of tiny little hairs. We buzzed his head the other day but that just means short little hairs falling out instead of long hair. So While he was in the bath we decided to go ahead and shave his little head. We made it fun but it was killing me inside. It was a moment that I will never forget. Me and my little son in a quiet hospital bathroom shaving his head and both coming to a further unspoken realization of this cancer that has been plaguing his body and sharing a moment together that we will never forget. It has truly been an honor and privilege to serve my little boy in ways I never thought I would have to. This experience has taught me more about love and service than anything in my life. So after getting cleaned up and freshly shaven he was ready for his L.P. It went smooth and before long he was back in his room and ready to eat some hot wings that mom brought for lunch. Jamie and I spent awhile longer with him and then were spelled off by Nana who spent the night with him. He had us a little worried at times thru the night because of border line high temps but was able to break the fevers early in the morning. (Thanks mom for the hourly updates.) His ANC is down to 15 (.Ability to fight infections) a healthy adult ranges about 1500 To 2000 from my understanding, So we are being vigilant in keeping him safe and hence his long stay here at Children's. Thank you all for your continued support and prayers. They are being heard!

Update from Nana:

I love my one on one time with Daner and find it so enjoyable.  As a Nana who has the family over on Sunday's for dinner, most of the time a sweet hello is what I get and then they are off to play with cousins and jump on the tramp.  Rarely do I get the opportunity to have such precious conversations individually with each grandchild.  While I was having my time to come and stay the night with Daner we were able to have some really special moments talking about college, school, and in this case about engineers.  Dane's Uncle Kasey is graduating in engineering at BYU and his Aunt Katie is graduating in nutrition and I will be leaving with some of the family to celebrate this occasion and wanted Daner to understand why we would be gone for the weekend.  Daner wanted to know how engineers make their money and connected careers with schooling it takes to graduate in these fields and the labor involved to do certain jobs.  He had so many questions for me.  It was a hard night because Daner kept a fever that escalated throughout the night, but with reassurance from one of his excellent nurses and many conversations on the phone with Daner's concerned parents, and a very worried patient and Nana, we made it through with his temperature finally coming down to normal levels in the early morning.  This time to be with Dane and have these meaningful conversations were the highlight of my visit and so priceless.  I did have a funny moment in the morning with one of his more stiff physicians.  As his doctors were making their rounds they came in and nonchalantly gave me the results of his lp which tells if they have killed all the bad white blood cells in the spine.  He told me with having 2 negative results they were hopeful that on Friday, it too would be negative and Daner would be done with the lps for the rest of this first session of chemotherapy.  I was like "What?,  "you mean to tell me that he has 2 negative labs on this? "  The doctor replied that after further testing on the labs done last Friday, that they did give it a zero reading!  I couldn't believe what I was hearing!  I asked the doctor "why aren't you more excited about this, I feel like doing a toyota jump!  He finally broke a smile and cocked his head forward in a laugh, but quickly pulled himself back together and told me that yes, this was good news and the protocol they anticipated Daner to follow in.  I had to call Dane and Jamie and tell them right away, what a relief to us all!  I  called each of my children to tell them this wonderful news later in the day and get to share in the joy as I spoke to some of them and leave messages.  God answers prayers everyday!

Daner and Bugs Bunny

I just love Daner's smile in this picture, he has the most beautiful and natural smile. 

Cole was coming to see Daner and wanted to use his 'eagle bucks' at school to buy something for him at the auction.  When they had the auction Cole didn't have enough to get this bunny that he was sure Daner would love.  Cole has such great friends in his class who quickly put their eagle bucks in to help buy it.  They said make sure you get a picture of him with Bugs!!  So here it is, thanks for all the help from the kids in Cole's class at Encino Park Elementary.

Hot wings!!!

Dane enjoying some hot wings after a hard day.

Dane after his LP in recovery

Dane after dad shaved his head

And the buzzing continues...

So sweet.  Jamie got a call that Dane's friend Max saw all the heads being buzzed for Daner.  He went home and had his own head shaved and recruited his two little brothers!! 

Evan shaves his head to honor Dane.  Sent by Jyl Clark

If anyone joins in please send your pics to: pearcefam5@gmail.com so that we can post them here on Daner's web sight!


Drew Hawkins- 9 month old!




Another buzz in honor of Daner!



Grandpa J getting buzzed

Sean with a "D"

Sean getting buzzed

Dayton's turn!

Dayton, Papa and Sean

Having fun with Stephanie



Stephanie came to play!



Nerf time!

Dane doing b'loonies



Getting bigger and bigger...




The WWF wrestler thought it was great Daner wanted to eat carrots and a banana today



Dane's Book Club!

 

Join us as we "read with Daner!" There will be a new book each month. This month is
100 Cupboards!
Feel free to join us and have your kids post comments under this post!

New visitors

Dane WWF fighter Justin Wren

Dane with the crew

Dane with swat patrol officer Doug Steinhour

Saying goodbye to Grandad

Saying goodbye to Gigi