Saturday, May 28, 2011

He went from 28 to 315 in one day!!!

Time to go home 
Leaving the hospital
On Thursday, May 26th, Dane's doctor came in to see Daner (Mom was dropping Mikayla off to school and Talia to play at a friends,) and the doctor told him that his ANC had gone from a 28 to a 315 overnight!  The nurses and doctors were amazed by this jump and couldn't believe it! Dr Nancy told Dane that this was great and he could go home.........today!  Daner called and told me, so I grabbed his containers and I was so excited to get to the hospital and pack him up!  When I got to the hospital Dane's nurse said that all the nurses were congregated around his sheet (above) in shock to see the numbers jump as they did.  She had been working on this floor for two years and had never seen anything like it!  It was such a faith builder to us for the power of prayer from all who are doing so in Dane's behalf!  Daner and I giggled as we quickly packed his room in excitement to surprise his Dad and brother and sisters in his arrival home!  I was shocked we were able to fit all the containers (the picture above was only half of it), food, balloons, and suitcases with ourselves inside his Dad's compact car!  We only lost one balloon, Dane's favorite singing balloon, in packing it all in, but we got home as quickly as we could and jumped in our other car to pick up his Dad and brother from the airport.  Luckily as we had been packing Dane's dad kept calling us, disappointed, that his flight kept getting delayed.  We were quietly smirking in delight because we needed a lot more time to pull this off!  Daner hid in the back of the car and when they went to throw in their luggage in , out he popped.  He scared them half to death.  It was awesome!  Next we picked up his sister, Mikayla, from a friends and had her do the same thing.  She screamed in fear and then delight!  It was so fun.  Last but not least, his oldest sister, Halee and Nana and Papa came by our home at 11 pm to drop Halee off  and he scared all three of them as well.  We laughed at all the white lies he had to tell them throughout the day so they wouldn't know he was home when he talked to them on the phone.  It was great and his brother Ty insisted on celebrating once again with the kids favorite: a cookie cake.  It was so so good to be home together again!


Welcome home Dane!!!

The day after Dane came home was field day at Gold Rush Elementary.  He was able to say hello to his classmates and cheer on his brother and sister.  He really got excited to see his friends in their Team Daner t-shirts!

Part of the Ginn family
Dane with some of the Bentley kids

Lamb family supporting Daner

Thursday, May 26, 2011

Having fun with Uncle Rick, Aunt Heather, Cam and Conner!

Andrew and Daner in their rasta hats Sean and Laurie brought them back from the Carribean.

The Morris Family
Fun visit from friends Kristi and Zach 

My sweet friend, Kristi, was so nice to come and visit during all of our craziness!  She brought Mikayla and Talia to us after playing with Talia for part of the day, brought us dinner and cookies for Daner.  Zach played  bingo with Daner, Kristi read to him and they played UNO with all the kids.  They even sat with him while I did his Taco Bell run.  Thanks Kristi and Zach!
Getting some snuggling in while having a sleepover with Daner
Second night with Daner

Wednesday, May 25, 2011

Talia and Daner taking a nap

Pizza night from the Harley- Davidson crew

They clean Daner's room twice a day to keep it germ free!

Talia taking a sink bath while Dane gets checked by his nurse

Talia and Miki's first sleepover with Dane

Mikayla and Daner having a movie party in Daner's bed
While Dane's Dad, brother and oldest sister were in Utah for Uncle Devin's wedding, Mikayla and Talia got to stay at the hospital with Daner and Mom.  It was a little crazy, but mostly fun.  The girls were very sweet to Daner and he was so kind and loving back!  I think he enjoyed something different.  We went for walks, ate gelato, played bingo, had a movie night, played games,  pizza night, snuggled and most of all enjoyed each others company. 

Tuesday, May 24, 2011

Uncle Rick and aunt Heather Cam and Conner

The girls playing while Daner does his school time
Dane having school time with his hospital teacher


Mikayla and Talia playing with Daner

Talia worried about Dane's owie.

Gelato party

Sunday, May 22, 2011

Ice cream party with Daner

Hanging with Rick's family

Friday, May 20, 2011

Fixing Dane's needles

Dane with Uncle Rick and Aunt Heather
Uncomforta​ble port needles getting changed
Friday, May 20, 2011
So Dane overall has done great the last few days.  Other than getting his port changed he has been feeling really good.  Eating, building Lego's, meeting with his hospital school teacher, doing art with an art student from Naoopa Art College in Boulder, and visiting with family and friends in the hospital.  His port change was pretty tough.  He had an allergic reaction to the materials used to hold down the port and his skin was pretty irritated.  So when they rubbed it with the alcohol and put the needles back in it was really painful and itched and burned quite a bit so we had the nurse bring some Tylenol and benedryl for the reaction and after an hour he was a lot more comfortable.  His ANC number today is at a 7, yesterday it was 50 and the day before it was a 14, so they doctors and nurses told us that it would bounce back and forth for awhile, so not to get too excited yesterday when it was a 50.  This number is a gauge of his immune system so a 7 has been his lowest number yet and makes him really vulnerable to sickness and infection.  He is in really good spirits telling his nurse today that he can't wait until the third round.  I guess so he can be further along.  He had something really exciting happen this morning.  Kyle Dyer from 9 News came with the founder of the Gabby Krause foundation to interview him about his bag of fun he received when he first came to the hospital.  They were so nice and so very kind to Dane.  Unfortunately I got caught up in the moment and didn't take any pictures!!  I will put the segment on later when I get it.  They visited him for quite some time and were so doting on him.  Really amazing ladies.  Dane was really nervous about what to say before they came, but he did awesome.  He has one of his favorite nurses today, Nanette, her daughter actually goes to school with Dane and is in his grade and Nanette is amazing.  She fixed his port today which was a little uncomfortable, but she was so gentle with him. (The lines were going the wrong way)   That will hopefully be his biggest challenge for the day.  He is still on his antibiotics for another 10 or so days for the infections he got in his lines on Sunday.  Last night we were able to go down to the main floor to enjoy the train displays they have set up through today.  He really liked getting out for a walk, getting some treats in the gift shop,  and watching the train entertainment.  He also enjoys his arts therapy and has been working on some different Christmas pictures for  a Christmas card contest.  It makes him excited for Christmas and is looking forward to being home then.  He also has liked having family come and visit him.  Uncle Brandon comes and reads him Harry Potter and can do all the voices brilliantly.  Really entertaining for Dane and all who are in the room listening.  Uncle Rick and Aunt Heather are here with his cousins Camden and Conner and they have been cute with him.  The boys enjoy building whatever Lego Dane seems to be working on at the moment.  Right now we are, for the most part,  playing the waiting game with his numbers eager for them to be on the rise so he can go home once again. We are so grateful for his progress and for days when he feels good. 

Thursday, May 19, 2011

A visit from Camden and Conner

Daner with cousin Camden from Virginia

Daner with cousins Camden and Conner

Dane and Cam

Tuesday, May 17, 2011

New Pictures

Dane doing art therapy with a student

Dane with his finished 1664 piece ship

Daner with his finished Lego

Here he is with Halee's friend Jenna

Cranes for Dane

On Sunday, May 15, Daner woke in the morning and felt pretty well.  He ate breakfast, I read to him from the Ensign, we watched a Disney movie, his primary teacher brought him the sacrament and we worked on a new lego set.  When the doctors visited they reminded us that it is hard to be in the hospital when you are feeling good, but AML patients go down hill fast and they tend to get fevers that spike quickly and by the time they get back to the hospital they are in a bad situation, so we were content to sit in our "safe bubble" and stay away from the germs and bacteria. 
Later in the evening Dad brought Dane's brother Ty and sisters Mikayla and Talia to visit Dane.  We met on the 2nd floor, which is the surgical floor, super clean, and the kids were so excited to see him! Tali gave him lots of loves and questioned if he still had an "owie" and pointed to where it was.  She was so sweet to him.  After about 10 minutes Dane's demeanor changed and his stomach got upset and he started to feel feverish.  Dad took him back to his room and the nurse came in and took his temperature.  Dad got him comfortable on his bed and I took the kids home. Within the hour his fever rose above 105 and they quickly reconnected his fluids, gave him antibiotics and benedryl for the upset stomach.  He got sick a few times and was really uncomfortable.  A family friend came and gave Daner a blessing with his dad and soothed Ty who was going to stay the night, but got an upset stomach from all the goings on in Daner's room.  Ty was returned home and when I got back to the hospital, the benedryll had taken effect and Daner was out.  His fever had come down and all was well again.  Dane's dad and I took a deep breath and commented on how previously that day the Dr's told us how fragile these little AML kids are and it all had new meaning to us now.
Dane did really well on Monday.  He was a little disappointed he was still connected to his lines, but grateful for medicine that can get on top of infections, nausea, and fevers!  He ate pretty good and his hardest trial for the day was some heartburn.  Our friend Stephanie visited and made cranes with Dane for hours.  (1000 bring good luck and after counting they have a little over 200)  He now has some fun cranes hanging above his bed.  Our friend Whitney brought Dane some dinner Monday night and he was really excited about the cookie bars she brought, but anxious for his heartburn to be gone so he could eat.   After an hour or so he was able to enjoy some dinner and treats.  The night was relaxing and we finished his Star Wars Droid Tri-Fighter plane. At midnight he started to get a slight nose bleed, which made us nervous because his last nose bleed lasted for over 4 hours!  I put a rag under his nose and told him to wake me if it picked up any.
Early Monday morning the nose bleed had gotten worse and Daner felt a little panicky.  We called in the nurse who looked at his blood work and saw he need a platelet transfusion.  She also did a nasal spray and after 10 or so soaked wash cloths of blood the nurse made him a nose plug of gauze.  An hour later it finally had stopped and Dane was relaxed once again.  He felt only up to a light breakfast, but the Dr's reminded him to keep food on his stomach to prevent further infections from the bile in his stomach as well as preventing the heartburn.  The doctors told us that he had gotten an infection in one of the port lines and two infections in the other line, but apparently they are very common and the antibiotics were effective and working for him.  This was the cause of the rapid and high fever on Sunday, and the Dr's reiterated the fact of the importance of being here in the hospital so they can act on it FAST!   Daner has had one of Halee's sweet school friends here with him today, Jenna, who is having a procedure done downstairs later.  It got postponed for a few hours and she has been right by his side keeping him company- so very sweet!  Also, our friend, Sara, visited and brought some food, which Dane dove into right away.  This afternoon Dane was able to do some school work with his teacher here on his hospital floor as well as do some art therapy with an art student.  He enjoyed doing art the most and worked on a Christmas picture.  Nana is on her way to spend the afternoon with Daner so Mom and Dad can spend some time with the kids at home and get the house ready for my brother Rick and his family to come tomorrow.  Hopefully, it will be a peaceful afternoon and evening.

Passing time at the hospital with fun activities



Building a new lego set

A visit from brother and sister on Sunday
Fun for a minute before he spiked a high fever and got real sick




Dane making cranes for good luck to hang in his room


Friday, May 13, 2011

Finishing Round 2 of Chemo

This week has been a good week over all, Dane has dealt with some pretty sick days but at the same time has recieved some pretty good news about the progress he is making. As of the last update he started his second round of therapy, this second round was a little bit shorter in duration but about as equally as toxic as the first round. He was really sick for awhile there but has done very well over all. One of the biggest diffrences during this round is the fact that he has not had to go through all of the lumbar punctures to get rid of the Lukemia in his central nervous system. He finished up his round of Chemo Wednesday and is in geat spirits. He has a much better appetite this go around, again a result of no spinal taps and that extra chemo in his spine.  He polished off two big macs the other day and has been constantly hungry since finishing chemo. This is good news and we hope he is able to put some of those pounds on that he lost last month.

A few days after we had his bone marrow asperite we recieved the results of his tests, which is kind of a report card if you will on how the first round went, and we found out that in one of the tests that he is in REMISSION! Meaning after looking at his bone marrow  through the microscope they could not detect any cancer cells. This means that we go on as expected with his therapies and that his body is responding very well to the chemo drugs they are giving him.  The other test is a moleculear test were they get extremly detailed DNA info.  In this test his cancer was still manifest but in very low levels. While  the chemo drugs they are giving him are doing the job it is still hard to watch them go into his body, they have dangerous side affects that could effect his heart and other organs for years to come. They will be monitoring him for almost ten years out. A necessary evil, but grateful to have it.

Dane's aunt Kari and cousin Ryland came out this past week and we sure have enjoyed them! Kari was busy the whole time helping with the kids, making meals and allowing Jamie and I to spend time at the hospital. She brought a fun energy  that we needed and did a lot of fun projects for the kids and Jamie. She had some fun visits with Daner and painted him a really cool Star Wars window picture for his room.  Thanks Kari for spending time with us and for all you did for the kids and Jamie!  (See picture in previous post)

Dane has been enjoying visits from uncle Brandon, he has been reading Dane the Harry Potter books, using very good accent voices I might add.  Dane has also had visits from Kasy, Katie and uncle Devin. Nana and papa have been great spending time with Dane and spending the night with him while Jamie and I have been under the weather.  (See picture in previous post)


Dane has been working on a very big lego project this week! A huge pirate ship! it has over 1,600 pieces and has been a lot of fun for him.  He has been putting it together for a few days now with the help of papa and myself and it really is helping pass the time.  It is the talk of the floor, the nurses and doctors are coming and always checking on his progress. It makes him feel good.

Thanks to everyone who is supporting Dane and our family and following his updates, we appreciate all your support.

Saturday, May 7, 2011

Great visits with GREAT visitors

Daner and Ry hanging out

Daner and aunt Kari hanging out in his hospital room

A visit from uncle Brandon and aunt Bev and cousins Duke, Bekah and Addie

A visit from an orthodontist and his son with a build a bear

Daner with teacher Mrs. Conrad