Scarlett Update for June 2015

Scarlett has had a rocky start to summer. Actually, the last few months have not been great.  I blame most of it on the chemotherapy introduced in Maintenance called 6MP.  It makes her nauseous some days and vomit on others.  Overall, she has been tired and not herself.  However, in the big picture, she is doing great.  She had a spinal tap 2 weeks ago and everything continues to look good.  The light at the end of the tunnel is looking brighter!!  Scarlett should have another 7 months of chemotherapy treatments and then she will be finished.  We take everything day by day and we appreciate every day we have be given.
Last week, we flew to Texas to visit my family.   We arrived late Saturday night.  By Sunday afternoon, my brother was driving us to the hospital as Scarlett was having a severe allergic reaction.  We opted for the local hospital instead of the children’s hospital because it was so much closer and I wasn’t sure if her reaction would start affecting her airway. (Her airway was never compromised.). We walked into the hospital and they took one look at her very swollen face and rushed us back to the doctor.  The doctor immediately gave her steroids and Benadryl and asked if we would agree to transfer her to Dell Children’s Hospital which was better equipped to deal with a child – particularly one with a suppressed immune system.  We immediately agreed and were transferred that night.  Scarlett was discharged the next day feeling and looking better but with no answers as to what had happened or why.   Over the course of the week, she had minor swelling of her lips and cheeks and generally felt miserable.   She was exhausted and had very low energy.  We flew home Sunday and went directly from JFK to MSK.  I can’t tell you how relieved I felt to be back under the care of Scarlett’s team.  Her CBC (complete blood count) showed she was not only neutropenic but also low on red blood  which explained why she was so lethargic.  We checked her blood counts before we went on the trip and everything was strong. This was just another reminder how quickly things can change.  Scarlett received a red blood cell transfusion and oral antibiotics to treat an infected finger and infected lips.  The doctor  took cultures of both her lips and her finger to try to figure out what was going on in her little body.  We were sent home Sunday night.  Monday morning, Scarlett woke up with red dots all over her face.  Before I could call MSK, they were calling me to bring her back in as they were very concerned about her infected finger.    With no white cells to fight the infection, it could spread rapidly.  To say that Scarlett was angry about having to go back to the hospital would be an understatement.  On the drive to the hospital, I heard “I hate you Mom.  This is all YOUR fault. In fact, it’s your fault I got cancer. You are the worst mother ever.  Actually, I am glad we are going back to the hospital so when they stick me with needles and I start to cry you will have your heart broken.”  Wow,  Deep breath.  Of course, I knew she was just scared and tired and miserable and meant none of it.  I was tired and a little scared, too.
After examining Scarlett, the doctors decided that they needed to drain her finger. That had not been on my radar.  I usually prepare Scarlett before our hospital visits so that there are no surprises.  The doctor asked her to lay down. I asked her if she wanted me by her side. Still fuming, Scarlett replied no.  The doctor brought out the scalpel and advised her to look in the corner away from what he was doing.  Instead, she looked at me and I looked at her.  We have been through so much together that we didn’t need words.  As the tears flowed and she softly whimpered, I was there by her side holding her hand.  She needed me and I needed her and together, we got through another bump in the road.
As we walked out of the room, Scarlett stopped me and apologized for being mean and gave me a huge hug.  I love this little girl more than I could possibly express in words.  The actual treatment for cancer is hard but the emotional side is also difficult.  She has been battling this disease for 19 months.   I am just so grateful that I am able to be there for her 24/7 to help her deal with everything that is spinning in her mind. It’s a lot for anyone to digest let alone an 8 year old.  I am eternally grateful that I work for an amazing boss who has allowed me to do the most important job there is to do – be a Mom.  I am also thankful to my colleagues and to my company for their continued understanding as I support my daughter through her treatment.  We are also grateful to all of you for your continued love and support. When they told us this was going to be a marathon, they were not kidding!!
We will know in the next 24-48 hours whether we continue with this course of antibiotics or change to a different oral antibiotic.  There is concern that it is a resistant strain of bacterial infection that would require IV antibiotics in which case she would be admitted to the hospital.
As Scarlett and I drove home last night from the hospital, a song came on the radio which made us both happy.  We were both smiling and singing along with the radio to these words:
“This is my fight song
Take back my life song
Prove I’m alright song
My power’s turned on
Starting right now I’ll be strong
I’ll play my fight song
And I don’t really care if nobody else believes
Cause I’ve still got a lot of fight left in me”
Yes you do Scarlett! And don’t you worry because we ALL believe in you!