Amanda and the Hendersons

Let this little image melt your heart as it did mine!!  If there is anyone that baby Phinlynn loves to spend time with...it is her biggest brother Paysen....these two have a sweet bond....Buds for sure!! Things have been crazy for these two kids....the ones who are healthy....... There is a lunch at the hospital for parents of the hematology and oncology patients..... It is a chance to get together and meet other parents and to feel some support from people in like situations. I have avoided this lunch for almost five years........ To really understand the reasons, you would have to cruise around in my shoes for a bit..... Everyone knows about cancer.... We all know that we need a cure.... We all know that the nasty disease kills far too many people..... It is a terrible sickness.... People know that. What do you know about blood diseases?  What kind of things do we know about Hematology? The majority of the parents on the floor are the parents of kids ...

Today was a nice day...... Today we had permission to take Parklen out of the hospital for a few hours...... They are planning on beginning Chemo this week (again) and we are praying for it to be so....... and with weeks ahead of him in the hospital we wanted to give him a change of scenery for a while.... Walking through the halls of the hospital....our little boy grinning behind his protective mask....feeling safe in his daddy's arms. We loaded the family in the car and traveled the few blocks toward the apartment....knowing that our list of activities would have to be limited to inside the walls of our new home. When we walked in the door I asked Parklen what he would want to do on his break.....his answer broke my heart...."I just want to lay on the couch." He had spent the entire day before this moment looking forward to leaving, filled with anticipation..........he skipped his nap... and so, our little Man of Steel snuggled into a tiny ball on th...

Today was supposed to be day zero. Transplant day. Instead, its the day of questions..... Trying to figure out the next step. The day of praying.... for quick resolve.... for answers..... It feels like the days of praying for answers are countless.... Like in the past five years it has been my loudest cry.... Today.... I cannot help but be sad. Cannot help but feel a sense of emptiness. Today I have decided that dressing my daughter in a tutu is the only logical solution. So I did. Today there are many things to worry about.... Today there is stress.... Today there is plenty of unknown...... Today there is pain..... and then there's this............... Blurry Cell Phone pic.....but adorable none the less.

Everyone who loves Him knows, we should not question God.  However, sometimes it happens before you even realize.  Parklen should be checking into the hospital today to prep for chemo....... he will not be doing so. A call from his doctor yesterday evening stopped everything in its tracks. A test to look for yeast has come back too high.... in fact, higher than they usually even measure. They don't know the source. The risk is too high. They can not proceed. This amount of infection can be fatal......with the chemo drugs. Parklen will go this week and have some testing done to try and figure out the source..... to see if they can find it, and treat it. The doctors words, "I don't know when we will be able to move forward." I want to cry...... in fact, I have and did.  For hours. Why? Why, when my faith is so strong.....do I continue to see these types of situations?  Why must there be so many obstacles?  Why cant Parklen have s...

Last Sunday I asked Parklen as I loaded him in the car...."Are you excited to go to the hospital?"  His reply was heart wrenching....."I do not want my hair to fall out, and I am a little scared but I am very excited to play with my brother."  Leave it to Parklen to wait until the day he checks in to the hospital for Chemo to spike a high fever.  That's right, the day OF.  I should have been expecting it, after all he has spent five years proving that he is not a typical case.....or even close.  In fact, I mentioned to the doctor last week how amazed I am that all of his testing came back good....with out a hitch.  And so, last week I wrote about the anxiety of checking in for Chemo.....talked about how we were getting ready to start this new journey.....well maybe not.......not just yet anyway. He had more than a few fevers this week..... Which resulted in five days spent in the hospital.... and NOT starting chemo.  In turn, pushin...

Tomorrow Parklen will check in to the hospital.  He will spend the day being pumped full of fluid in order to get him super hydrated.  The following morning he will begin his first day of Chemotherapy.  In the bone marrow transplant world they mark the days with numbers.  Tomorrow will begin the count...  Tomorrow is day -8.  They count negative days until the day of transplant......Transplant day is day ZERO.....followed by a count of positive days.  The first 100 days after transplant are the hardest.  We can expect Parklen to be in the hospital for weeks after transplant......at least. Today was our last day together out of the hospital setting for a while.......we tried to enjoy each other.  Sadly, a lot of our time was spent watching Parklen sleep on the couch......but we managed to have a little bit of fun.  Games, movies......treats.....each other. There was a terrible storm back home and I was certain that Devan wo...

Today was supposed to be free of appointments....It was scheduled as a day off.  As I lay in bed this morning....tired from lack of sleep, my phone rang.  On the other end was Parklen's doctor..  He explained that there had been a problem with Paysen's blood test and it had to be redone before he would proceed with Parklen's admission and chemo.  I was freaking out.  after hanging up the phone we made a quick drive to the hospital where a few nurses and I had a giant fight with Paysen....they called in the big guns to come and restrain him because he is too big for me to do so..... he screamed and screamed.....it was not a good moment for me as I was filled with guilt....  Wondering if he was regretting his excitement over helping his brother.... When we left the hospital I decided to continue as if it were our day off. Parklen's doctor had suggested that I take him to the zoo.  He felt that, given some very strict r...