Sunday, March 11, 2012
The end of the long and winding road… Day 1210 10MAR12
Joshua made it! After fighting every day for the last 1210 days he is finally done with treatment and he is victorious in his battle against cancer!
I have been waiting for this day for along time and have oft despaired of it ever arriving at all. It has been an incredible journey for all of us and I am very thankful for all of you who have taken a few minutes out of your lives every day to follow along with us. Having all of you watching over Joshua has been very special and has made the path easier to tread.
We have met many wonderful people along the way, our family has had some amazing opportunities and experiences. We have lost some of our friends and watched some win their battles. We have watched our children grow older and welcomed a granddaughter to our family. We have grown as individuals and as a family.
I must admit that when I started this blog those many long nights ago sitting on a stool in the corridor outside Joshua's room in the PICU at Tampa General, glancing up every now and again to watch Joshua sleep in his bed with Renee packed into a corner behind him how much a part of my life it would become. I didn't realize the scope of what I was starting. As I look back now I am amazed at how many words and images I have sent out into cyberspace chronicling Joshua's journey for him. I promised myself when I created this that there would never be a day that we did not record the events of Joshua's journey and we have done it, a post for every single day from his first day of treatment until his last.
Some days the words came easy, others not so much.
Some days I finished entries through tear filled eyes, others with a grin on my face or a chuckle.
Some days when I was at a complete loss for words Renee came in and rescued me.
Together we have fulfilled my promise.
I chuckle at some of the places I have posted from, crouched outside a hotel office late at night, from a bunk bed out in the woods, after walking through the snow to find a signal, from all of our journeys together, from airports, cars, from where I stand right now. It has always been a labour of love and I hope that in the years to come it will provide Joshua with the chance to remember his journey and grow from it.
It is with great joy and great sadness that I bring this chronicle to a close. I will miss sharing Joshua's journey with you but I am also glad that his journey is over.
Now we must embark on a new journey, embrace a new "normal". We get to stop asking Joshua every night if he took his chemo before he goes to bed. We must face the uncertain future that is after treatment which is frankly quite terrifying. But we will continue to do it the way we have all these past days… Together.
As part of the end of his journey I asked Renee to tally up all of the chemo doses and procedures the Joshua has had over the last 1210 days:
Chemotherapy drug Doses:
Cytarabine - 25
Cyclophosphamide - 3
PEG-L-Asparaginase - 7 (shots in each thigh simultaneously)
Vincristine - 125
Daunorubicin - 3
Methotrexate IT - 47
Methotrexate IV - 4
Methotrexate PO - 108
Doxorubicin - 3
Thioguanine - 14
Mercaptopurine - 1108
Prednisone - 748
Dexamethesone - 14
Port Surgery - 1
PIC Line - 1
Kidney Dialysis - 1
Femoral Catheter - 1
Endoscopy - 1
PET Scan - 1
EKG - 2
Echocardiagram - 1
Bone Density Scan - 1
Port Study X-ray - 2
CAT Scan of Sinuses - 1
CAT Scan of Abdomen - 1
CAT Scan of Cranium - 1
CAT Scan of Chest - 1
Ultrasound of Abdomen - 1
Chest X-ray - 11
Radiation to Cranium - 8
Bone Marrow Aspirations - 4
Lumbar Punctures - 47
Transfusions Red Blood and Platelets - 18
IVIG Transfusions - 28
Total number of inpatient days (gypsy mode) - 199
Total cost of his treatment - $1,500,000, a bargain :)
He has 950 bravery beads on his string. One for each thing that was done to him at the hospital. The total string is now over 40 feet long and stretches from the front door of our house to the back. It is to become the garland for our new Christmas tree. It is joined by a string of 1216 orange beads that represents every dose of oral chemo that Joshua has taken. A string of 752 monster beads for each steroids dose and a string of 28 pink beads, in honor of Miss Carolyn as it is her favorite color, for his IVIG transfusions.
It is a humbling list.
So here is our gift to you Joshua. A record and a remembering of all the days of your journey fighting cancer. It has been a long and winding road that we have trod together and now we have reached its end.
Joshua your strength has never wavered.
You have faced each day with a smile and a courage the knows no bounds.
Words cannot express how proud I am of you, my little boy, my little warrior.
Tears cloud my eyes as I search for the words to tell you how much I love you.
You are the bravest person I have ever known.