Day Two Complete!

Whoa!  That was a long and boring day!  Logan and I just returned home from our 2nd day of doctor's appointments.  Today he had his radioactive kidney test with nuclear medicine. This was a 4 hour test with multiple blood draws to determine how quickly Logan's kidneys clear the medicine.  Don't worry though, he didn't have to stay strapped to the table the whole 4 hours.  We got to sit around on our thumbs a lot too, waiting for the next blood draw.  I think that's what made the day so difficult for us.  BORING!

Logan also had a chest x-ray today and a pulmonary appointment to check his lung function.  We will get the results of all these fun tests tomorrow when we meet with the bone marrow team, however today I got a call from his experimental medicine doctor with the results of yesterday's bone marrow aspirate.  0% leukemic cells were found in Logan's bone marrow!!!!  My boy is now in clinical remission!  : )  I would say that this new drug Logan was testing out is a raging success! 

Day One of Doctors Done

We are done with our first day of doctor's visits.  Logan passed his hearing test, did great for the bone marrow aspirate, and completed his Echo and EKG.  He is still a little woozy from the sedation medicine but is otherwise doing fine.  The Bone Marrow team ordered many many tests for Logan's pre-transplant checkup.  He filled 19 vials today!  Not exaggerating!

Amanda's Weekend

Amanda has kept me busy this weekend with her schedule.  Friday night she had a swim meet and did very well.  Her butterfly (shown below) won her 1st place.  She was neck and neck with another swimmer a few lanes away and I was cheering her on in true crazy mom fashion.  You better believe that my child can hear my voice while she is under water!  

We've discovered that when I don't cheer (because she has asked me not to in past races) she doesn't push herself as hard so she has asked me to let my freak fly and cheer cheer away! 

 Then first thing this morning we trekked to Crown Center for a girl scout outing of ice skating, lunch, and chocolate tour.

 While she has been ice skating before, she doesn't remember it.  That's how long ago she's been ice skating!  

 She did great except for one fall... I wasn't watching at the time and didn't see it happen but I heard it and felt it.  Yeah, she made the ground shake when she fell.  That's gonna leave a mark!

 All her girl scout friends!

Lunch at Crown Center where you can have your lunch delivered by train!  : )

Then off to the chocolate factory!

They learned a lot of the history of chocolate but I'm sure the best part was the taste testing!!!!

DELICIOUS!

Tomorrow we are off to the movies for a Mother Daughter date.  There is a new movie out that she has been waiting to see and just can't wait any longer!

One Week To Go

We are in full "get ready" mode here.  Eric has met with the KU medical team that will be handling his stem cell donation.  He got a complete work up on Thursday and the doctors did not find any medical reason for Eric to not be able to donate for Logan's transplant.  Eric will have one more checkup next week to make sure his hasn't caught any viruses so germs need to KEEP AWAY!

Knowing that we will be back in the hospital in a little over a week we have been wrapping up projects here at home and getting any last minute wishes taken care of.  One such wish Logan had was to see the new Rogue One Star Wars movie.  We went during the weekday when the theater was practically empty so Logan wouldn't have to wear his hated mask the entire movie.  We kept well away from the other few movie goers and Eric and I brought a blanket to cover his seat and super sanitized the arm rests before we let poor Logan sit down.  I don't really care if people think I'm over the top.  Safety first. 

Logan also wanted to check out his Grandma's finished renovation project.  She has been doing an extensive renovation for many months and Logan has not been able to view the finished project until now.  (Over protective parents here!  The doctors told us to keep way from construction dust and we listened!)  Since everything is complete, I granted Logan this wish.  He cooked lunch for his grandma and me and enjoyed making brownies with her and visiting with the horses.  We took the dogs with us because they love their Grandma and missed her too!

We have a busy weekend coming up and an even busier week ahead as we finish our last week pre-transplant.  

Girl Scouts Pinewood Derby

  Amanda's girl scout service unit teamed up the a local cub scout pack for some racing action, pinewood derby style.  Eric was happy to help out with the event. 

Amanda and some of her girl scout friends competed in the races this year.

  
 I'm not sure what I did to make some of the photos turn out blue-ish, but this is what we have...  Amanda's car is ready to race.  It is the blue one closest to the end.  

  
Action shot... should have used the fast setting...  I'm still learning how to work this new camera.

She and her dad made a fast car!  She won second place in her division.

Here are 1st, 2nd, and 3rd place winners in her division.

Her five scout friends that joined her in the races.

 And their cars that they worked so hard on!

Man o man does my baby look grown up!

Transplant Schedule Is Set

We now have Logan's schedule for transplant.  He will be in the clinic Monday, Tuesday and Wednesday starting January 30th for a myriad of pre-transplant tests.  Then admitted to the hospital on February 6th with chemo to begin the 7th and continue through the 12th.  One day of rest on February 13th and bone marrow transplant on February 14th.

Since Logan will be doing chemo on his birthday, we are planning to move up his birthday celebration to February 4th.

Getting Out When We Can

Logan had another doctor's appointment this morning.  Today will mark the 3rd week with no transfusions!  While his blood counts are not wonderful, they are high enough to prevent transfusions and that makes everyone happy.  He is still neutropenic so we are keeping with our germ avoidance protocol.  When possible Logan is getting out and about to break up the boredom of hanging out at home day after day.  

When we still had snow on the ground I took Logan to Burr Oak Woods Nature Center for a trail hike and to watch the snakes eat.  He is becoming a passionate nature lover and is considering going through the volunteer training program at the nature center next year.   

He is feeling great, looking great, and doing great.  

One More Month

We just got back from the doctor and now have a plan for transplant.  Logan's doctor would like to do one more month of this new drug to hopefully get him into remission before transplant.  We are planning on Logan being admitted sometime the week of February 6th.  We are also going to go a different route for transplant than previously planned.  Logan's doctor has heard wonderful things about a new treatment approach that has yielded great results in trial patients with his type of relapsed AML.  It is a haploidentical  stem cell transplant.  Haplo meaning that only half of Logan's HLA (human leukocyte antigen) proteins will be a match as the donation will come from one of his parents.  Eric and I both were tested to determine which one would be the best match for Logan and they have determined that Eric is the best candidate to donate stem cells for Logan's transplant.  While Logan is undergoing the pre-conditioning chemo regimen to prepare his body for transplant, Eric will be taking G-CSF injections (granulocyte colony stimulating factor)  to generate excess peripheral stem cells that they can harvest the day before Logan's transplant.  This will allow them to collect Eric's stem cells through IV and filter the stem cells out giving Eric back the remaining blood (rather than pulling directly from the bone marrow).  They are also planning to collect enough lymphocytes (a type of white blood cell) from Eric to give Logan scheduled lymphocyte infusions at day 30, 60 and 90 post transplant.  These lymphocytes will stimulate Logan's new immune system to search and destroy all remaining leukemic cells once and for all.  

2nd Month Was Successfull

Logan's second month on this new drug was very successful.  He is now down to only 1% leukemic cells in his bones!  Hip Hip Hooray!!!  We are still waiting on a call back from his doctor to discuss where we go from here.  I'll update when I know more.

A Happy Camper New Year

Logan really wanted to do some more camping and try out some fun Christmas gifts this weekend.  We had no plans for New Years Eve so we decided to go camping!

We did a lot of relaxing around the fire... 

 After dark we played games in the camper while while waiting for the time to break out the bubbly and toast the new year.  

It's not a large camper... but we all still managed to fit!

New Year's Day I went for an early morning bird watching walk with the dogs while my family slept in.  It was a really great day for birding!  I saw many many birds, but my favorite were all the golden-crowned kinglets!

 Back at camp, we had to have another campfire...

... and Dad had to head back to bed!

Then we headed out for a hike and some geocaching!

 The dogs were loving the adventure...

 ... and were ready for some down time while we packed up camp.

What a wonderful day to ring in the new year!