Cycle ONE of Antibody treatment complete at MSK………

I have not been blogging here lately and I need to catch up those up follow Addi’s Journey here.  I apologize but life has been chaotic.  Last week Addi had her first cycle of treatments in New York at Memorial Sloan Kettering.  I have to admit after the first treatment last Monday I was second guessing if we made the right decision of putting her through more treatment.  The treatment is very hard on her little body and it is really hard to even express or explain that first day of treatment.  It was hard for me to watch what her little body was going through.  The pain was intense, high heart rate, low blood pressure and difficulty breathing that required oxygen and two breathing treatments.  This lasted for about 20 minutes while the antibody infused.  It was hard to watch and scary because it was our first time with this treatment and did not know what to expect.  After the treatment infused, the pain stopped and after a little while all vitals went to normal ranges.  She slept the entire day as it wore her little body out.  This treatment is only done on Monday, Wednesday and Friday so on Tuesday her body was able to recover and she felt good with no pain.  The side effects are minimal but she did start running a fever which landed her back in the hospital for antibiotics and fluid.  That is normal and expected.  Her appetite for the entire week was decreased and didn’t really want to drink much either.  Our anxiety was pretty high when Wednesday rolled around for the second treatment but it was much easier and again what they expected.  She had pain but it was not as intense and she did not require breathing treatments only a little oxygen.  She recovered from this one much easier and quicker.  Friday was a little harder with pain but again not as bad as Monday’s treatment.  By Saturday afternoon Addi was back to her normal self being funny, happy and playful so we enjoyed some time out exploring the big city.

As hard as the treatment was on her, the long term side effects are zero and when she comes home she will have minimal to NO side effects unlike the terrible chemo that she had to go through for months.  I believe 30 minutes of pain, although it is hard on her, is worth it if it saves her life and this cancer never returns to her body.  As I have watched the stories of a few little warriors that are going through stem cell transplant and seen what this treatment has done to these poor babies, I believe I would pick this route over and over to avoid her going through not one but two of the stem cell transplants.  That would have been the protocol for her if she had not went into liver failure.  Although this is hard, I believe God spared her from going through that horrific process.  She has went through so much and the antibody treatment she is getting is the lesser of the two evils in my opinion.

We flew home yesterday and oh how it felt good to be home.  Living in the country is amazing and when you visit other areas of the country you realize even more how blessed you really are to live in the best place in the world!  Huge shout out and thank you to my amazing daughter Alexis who went with us to New York.  I could not have gotten through the week without her.  She held Addi when she was sick, comforted her when she was in pain, played with Addi whenever she wanted, pushed the stroller for miles all over the city, spent hours at the hospital, went 5 stories down to get milk more times than I can count, helped me maneuver around the city and did whatever I needed to help.  She is one amazing girl and I am blessed to call her my daughter.  When we arrived our 3 grown children and their significant others that live close (other two live out of state) were there to greet us and eat a wonderful dinner my husband put in the crockpot before he left to come pick us up.  I am so blessed with the most amazing husband, kids and family.  I know we could not have gotten through this past year without their endless love and support.

We are going to enjoy a few weeks at home relishing in the clean air and soft bed before we return to New York for cycle two on September 15.  Addi will also have a bone marrow aspiration done at the next cycle.  The MSK team is amazing and we are so thankful God opened this door so that Addi could complete this treatment to keep her cancer free!

Here are a few pictures from the trip!  Thank you all for your love, support and prayers!

Much Love – LaLa