First Return Appointment

Our journey has only just begun.  We returned to the hospital Thursday for labs, a visit with the doctor, and lumbar puncture, chemo, and some platelets.  The first seven days after the diagnosis were spent in the hospital.  Now, the goal is to come in weekly for the next few weeks for chemo, lab work, etc. The only problem is that Ainsley's platelets (help stop bleeding) and Hemoglobin (carries oxygen in Red Blood Cells) are both low enough that she is needing transfusions and visits every 3-4 days.  She saw what it was like to access her port...one quick stick...and although she didn't like it, there was definitely a happier calmness over her when she knew that she didn't need to get stuck anymore that day.  After giving her platelets, she got a lumbar puncture and another round of chemo.  In all it took about 5 hours and she was able to come home with us the same day!  The only little setback was that she has an infection from a hematoma on her left hand from an IV stick when she first got to the hospital last week.  They gave her a dose of IV antibiotics and now she is taking oral antibiotics.  She definitely didn't want to add another medication to her daily meds, and her fighting spirit continues to get its exercise ;-)  Monday morning she'll be back to the hospital for a lab draw, and likely platelets and possible packed red blood cells. 

When we arrived home from the hospital, two of our friends from church, Nathan and Emily Christensen came by to give Ainsley one of the most beautiful gifts we have ever received.  Nathan plays the most beautiful violin music I have ever heard.  He has had me in tears at church before listening to his music.  He sat down with Ainsley and asked her about her favorite Primary songs.  "I am a Child of God" is her favorite and is one I found her singing to herself in the hospital and is the one that Jenny sang to her on the day of surgery when she was too frightened to take her medication.  He played it beautifully.  Jenny was taking a nap in the other room and as soon as she heard the music she said she was filled with the most overwhelming Spirit of Peace.  I too felt the overwhelming love and comfort of the Spirit of God.  What a precious gift!  Ainsley has a video of her watching Nathan as he played and it is something I know she will cherish forever.  Once again, those around us knew exactly what we needed before we did.  He also gave her a "Twinkle Box" which is the rough shape of a violin and is how children are taught the positioning for "Twinkle Twinkle Little Star."  Emily is an extraordinary person as well; one of the most gifted public speakers and writers you will ever meet.  She writes a regular blog that is inspiring to read.  Having the two of them in our home was a precious treat.

Ainsley has developed a pretty quick gag reflex now that she is taking pills by mouth.  She loves cheese, so we've been smashing a thin layer of cheese around the small pills.  Since the medicine is not liquid, we are unable to control when it goes in her mouth.  We end up spending half the day trying to convince her to take the medicine, and a few hours later start the process again for the evening dose.  Brings a whole new meaning to "dosido"(hehehe..."dose-y-dose" that was for all of you pun-loving people out there).  A major breakthrough for us was the pill crusher combined with vanilla yogurt.  We'll see how long that lasts.  This girl definitely does not like taking medicine.  As we were sitting there and she was near exhausted from the battle, she looked up at Jenny and I and said "Mommy, why did I have to get sick?" followed by "I wish I didn't get sick."  We couldn't have said it better ourselves.  It felt like a punch to the gut, and no, we didn't have a profound and beautiful answer for her.  "I don't know" and "we wish you weren't sick too" was the best we had to offer.  Sometimes we don't need to have the right answer I guess.  Sometimes there's comfort in knowing that we are all united in not knowing the answer to the same question. 

Tonight, Jenny and her mom took the older girls to Basket-Bingo at the elementary school.  Sounds like it was a rocking party.  Ainsley, Hudson, and I stayed home.  Ainsley is quite the bowler on the X-box Kinect.  We had a fun date and Hudson didn't seem too bothered by how the night went.  During the evening Ainsley said "Daddy, I love you, I wish you were my Daddy forever!"  It was a nice shot in the arm ;-)  I told her I would be and I love her too.  A nice bonding moment.  Don't worry, she quickly got after me a few hours later when it was time for more medication and I was once again greeted with the outbursts of "I don't want you!  I want Mommy!"  Jenny and I seem to be playing "good cop/bad cop" through this and I have the responsibility of bad cop.  She'll thank me when she turns 50 and is still living and strong, with a family of her own that is living and strong.  But until then I'm sure she'll have many "remember the time, Dad, when you took me to the hospital and they gave me shots," and "remember when you told me I had to take that medicine and I spit it all over you because it was disgusting..."  The joy in the journey, right?