Tuesday, March 27, 2012
Joshua got swept up in an early morning raid and transported to the St. Joseph's holding facility. After waiting several hours to get the paperwork in order he was summarily deported and then given back into our custody for further processing.
To all of us today really signified the end of his treatment, the final step in getting him out of the cancer life and back to being a normal, healthy boy. We have waited a long time to get his port removed and it was a great relief to see the surgeon come out with a smile.
The surgery went extremely well and only took about 45 minutes to complete. His port and all it's sundry attachments came out without a fuss and nothing decided to stay behind. We walked into recovery to find him wide awake, thirsty, and ready to go get something to eat. We got him checked out of the surgery center and drove him straight to get something to eat before heading home to rest. He is going to be pretty sore for a few days and will have to take it easy for a couple of weeks while he heals up. Like always he went through it all with a smile and was a great patient for the doctors and nurses. We hope it is a long time before he has to be in that position again.
We will go back to clinic on April 2nd for our first labs after treatment. We will post the good results after we get them ;) Stay tuned...
Monday, March 26, 2012
Joshua has been doing very well since we last posted, working hard on school and trying to catch up. Last Wednesday Joshua attended the Lightning Clinic for Ice Skating and had a blast.
This past Saturday he had his first evaluations/tryouts to be on a recreational team for hockey. Jarrod also had his evaluations the same day. Both boys did very well. The teams start to play at the end of April and we will find out in a couple of weeks about their teams.
With all that going on, we wanted to schedule Joshua’s port removal. We wanted to have it out after his evaluations and before his team started. After talking to the doctors, Joshua will have his port removed tomorrow. This gives him enough recovery time before hockey. He will be sore for about 4 days and unable to do a lot of activity involving his arm for a few weeks but he should be ready for hockey by the end of April. Hockey is all Joshua talks about and its all he wants to be able to do. We are very excited to have Joshua get his dream of being a hockey player.
Please keep Joshua in your prayers tomorrow and we will post after his surgery.
Sunday, March 11, 2012
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.
Today being the amazingly special day it was called for a celebration!
But first Joshua had to take his LAST DOSE OF CHEMO!
A little while later Renee's parents picked us up and took Joshua and the family to a really nice dinner at Red Lobster. They choose the restaurant so that Joshua could get his favorite crab legs, which he did :) It was a yummy meal! We left there and headed in to Tampa because our great friends at the Pediatric Cancer Foundation had gotten the whole family tickets for the hockey game. My dad met us at the ice rink and we all headed inside. Our tickets came from the Vincent Lecavalier Foundation and were in his suite, center ice! Vinnie is the Captain of the Tampa Bay Lightning and a fantastic guy with strong ties to the pediatric cancer world. We got a chance to talk with him a bit in the suite during the game.
|Joshua and Vinnie Lecavalier|
|Our view of the ice|
The suite was fantastic and the boys and all of us really enjoyed being there. During the second intermission one of my good friends who works in the television studio for the Lightning put a special message to Joshua from all of us on the jumbotron, it read:
Congratulations to 9 year old
You are 100% cancer free!
You won buddy!
It was amazing to see that lit up in the middle of the rink for 20,000 people to see!
After the game was over we headed down to meet up with Coach Raymond for a visit. He took Joshua back to hang out with the players for a little while to celebrate his final day of treatment.
|Joshua with Martin|
We headed home after that, tired but having had a wonderful celebration for our little guy. A big thanks to all of the people who helped make his night so special!
Saturday, March 10, 2012
There are a couple of things I think everyone should know.
First is that Joshua and our entire family would not have been able to make it through these past 1210 days without this blog and without you, our readers, friends and family reading and posting everyday.
Second, Lee and I started this blog so we could recount everyday that Joshua has been in treatment. We decided early on it would either be a daily thing or every once in awhile. We decided that our goal was to write everyday so we could make this account of our son’s life into a book for him to keep. With that said, I would like to thank my husband, Joshua’s amazing dad, for holding up our end of the deal and never faltering from it even though he sometimes posted at 1 a.m. or had to walk out into the cold snow up to the main buildings so he could get a signal on his computer. I did get my chance to write every once in awhile but Joshua’s Story is credited completely to Lee.
Now for the hard part... Tomorrow Joshua will take his very last dose of Chemo. This is the day we have been waiting for and thought would never come. It will also be the day that we will stop posting daily, detailing Joshua’s life. Don’t freak out right away. We will still continue to post updates, like clinic visits, etc. but it just won’t be on a day-to- day basis. Lee and I both feel that this is the right time. It will be a time of adjustment for us to step into our new life without cancer. We, as a family, will never lead a “normal” life again but who wants to be normal, right?
I would like to request that all of Joshua’s followers please post a note for Joshua even if you have never posted before, so we can include your thoughts into Joshua’s book. This will always remind him how special he is and how much he was loved and thought of in these past 3 ½ years. Thank you from the bottom of our hearts for keeping our little boy in your prayers and thinking of him often. He is healthy and Cancer Free!
Thursday, March 8, 2012
Today was a typical busy day around our house. The boys had school this morning with Renee and I had lots to get ready for work before heading out for the day. Renee had to work this evening so the boys stayed home together until Pa came over to watch the hockey game with them. Renee got home a bit later and I followed after another bit. I got to talk to the boys for a little while before it was off to bed for both of them. We are only two days away from Joshua's last chemo does and end of treatment! Saturday is the big day and we are all looking forward to it! The end is near after our long journey...
Wednesday, March 7, 2012
Renee got Joshua started on school this morning and then passed the baton to me as she had a parent's advisory board meeting at the hospital. Joshua and I worked on his school stuff until he was finished and had a pretty good time at it. After a bit of a break Joshua wanted to go out and practice some hockey skills so we grabbed our skates and sticks and headed out into the street. He did really well, we are working on his wrist shot and he can really get it moving pretty quickly.
Renee got home a short while later and we all took a little break unit it was time to get dinner going. It was taco night which is one of Joshua's favorites and I got to add in fish tacos for me and Renee… yummy! The rest of the evening was pretty standard and after relaxing a bit it was off to the showers and then bed. Tomorrow we start our 3 day countdown to the end of chemo!!
Tuesday, March 6, 2012
School dominated the morning like most weekdays and the boys did great. Joshua got kind of a late start since he slept in for quite a while, a normal Tuesday after methtotrexate kind of day.
After lunch Miss Cocoa called to talk to Renee and before long Joshua was talking to Trent and they set up a get together. Joshua and I ran over and picked Trent up at his house and then came home so they could get some play time in. The giggles started in the car and didn't stop until they were eating dinner and that was only because they couldn't chew and laugh at the same time. As a part of dinner tonight we had a some of the loaf of bread that Jarrod baked today. It was his first time making bread and he did an awesome job, all the boys liked it a lot. After a little more playing around the house it was time to take Trent back home and then come back to watch the hockey game. The Bolts didn't have a good night and lost pretty badly, a bummer for sure. The boys headed off to bed as soon as the game was over.
Sunday, March 4, 2012
The winds came in with a vengeance late last night and it was quite blustery for most of the day. Joshua and Trent were up early but at least they waited for the sun to g et up off the ground before they started their day. A bite of breakfast and then they were off to church with Trent's family and a little playtime afterwards. Jarrod and I did our normal morning stuff and then got ready to go get some ice time. Joshua decided to opt out of skating this time to give is ankle a little more time to heal up. Jarrod and I had a good skate and enjoyed the time together. Hockey tryouts for both of the boys are coming up soon and with luck we can get them both sorted on to a team. We all convened back home for the rest of the day together. None of us did a whole lot I have to admit. Renee made a nice beef stew and fresh baked bread for dinner which was perfect for a cool windy day. We watched a little tele afterward and then it was showers and of to bed.
In the morning Joshua will have his last on treatment clinic visit! Only a few more days to go until he will take his last dose of chemo!
Saturday, March 3, 2012
Our morning was pretty laid back. Renee had to leave for work early and the boys spent a quiet morning doing stuff around the house.
Joshua called Trent this afternoon and asked him over to play and spend the night. His mom dropped him off right before dinner and the fun began. The boys had a full evening of playing and the giggles pealed through the house almost non-stop :)
Renee and I watched the hockey game and Jarrod played on the computer and wandered in to check on the game every once in a while. The Bolts won in overtime with Joshua and Trent cheering them on, they wandered in to our room just in time ;) It was a fun evening for all of us and I am sure the giggles will start back up as soon as breakfast is over.
Friday, March 2, 2012
Miss Carolyn showed up bright and early and in her usual wonderful fashion got Joshua accessed and got his IVIG started. He did really well and had no issues at all. She de-accessed him around 2 and went on her way. This is the last time that Joshua's port will be accessed! No more needles poking out of his chest, no more tubes hanging out from under his shirt! Many thanks from our family to the wonderful Miss Carolyn, she has been a blessing and turned what could have been an unpleasant monthly treatment into a pleasant time for Joshua. We will miss her monthly visits :(
|Last time with the pump!|
Renee and I both had to work tonight so the boys went over to Carly's house to play before heading over to grandma and pa's for the rest of the evening. They had just finished watching the Bolts win in overtime when I arrived to pick them up. It was straight home and off to bed after that.
Thursday, March 1, 2012
Normal day for the most part with school for the boys and work for me. At five Renee and the boys headed into the CCC for family night. It was our last time at family night as a family in active treatment! It has been many, many months since we started going to family night and we have made so many great friends there. I got off of work a bit early and headed over to hang out for a little while at the tail end of the evening. We will continue to go to family night we will just get to join a new club of families finished with treatment which several of our oldest friends are already members of. In the morning Joshua will get a visit from Miss Carolyn and get his final, we hope, IVIG transfusion. Only 9 more days to go on the chemo road...