Yesterday we met with 3 doctors from Jorden’s Houston medical team.
We first met with Dr. Curley who is a liver specialist. He will be in the operating room to assist Dr. Hayes-Jordan if she needs help extracting the tumor on the liver. Jorden’s liver is clear! There is one however on the surface which needs to be removed.
We then met with Dr. Anderson and Dr. Hayes-Jordan. They were thrilled with the continued tumor shrinkage. We then reviewed the surgery plan. Before we met with them, they had discussed the need for a colostomy – which they determined is notneeded.
They did inform us that they will need to remove his spleen. There are a cluster of tumors in his spleen which can not be extracted.
Jorden was very upset about losing his spleen and the knowledge that he will have to now take a pill each day to prevent infection, but has now accepted it.
Yesterday was an emotional day – but we are thrilled that his liver is clear, tumors continued to shrink, the doctors are thrilled by all the progress and how healthy Jorden looks and if he has to lose an organ. The spleen is a good one to have to give up. Praise God
Today will consist of another set of consultations and scans.
Jorden completed his final round of chemo on Wednesday May 9th and once again, knocked out the final round like a champ. It was a very emotional and satisfying time, when the nurse came in to remove the final empty bag of chemo. Thank you to all of the members of the Arnold Palmer Oncology team You were amazing with your attention and concern, and took wonderful care of Jorden. We miss you already and look forward to seeing you all when we return in August.
The first leg of this triathlon is finally complete!!
On Dec 21st 2011 we started a journey that seemed unreal and not ours. Today, five months later, we have made this journey our own, and we embraced each obstacle, each moments of joy and laughter, and each triumph. Jorden has completed 10 rounds of chemo in 20 weeks. He has done so with a positive outlook, great determination and focus, and with only one goal in mind – to beat this disease.
Jorden had been home for two weeks and has been both relaxing and preparing for the next leg of his journey “the surgery”!
While home some exciting things have happened;
First, Jorden completed all of his work and class requirements to pass the 4th grade. So starting in August, Jorden will be in the 5th grade. Staying with his friends and classmates was a huge concern for Jorden - thank you Ms. Suriano, and the team at Windy Ridge who worked with Jorden to make this moment happen. Jorden celebrated completing his last “school day” with a trip to Froyo’s with Ms. Suriano and friends.
Secondly Jorden was invited to the Tampa Bay Rays game on May 17th as a special guest of Carlos Pena. Mr. Pena went all out to ensure that Jorden had a great and memorable experience. Thank you Mr.Pena, and all of the players from both the Rays and Red Sox who took time from their warm ups to talk with Jorden. Also we would like to thank Mr. Vaughn for making this happen for Jorden.
And lastly Jorden had a fabulous send off. Family and friends came over for a pot luck on Saturday to wish Jorden strength and luck as he embarks on the next phase of his journey. Seeing Jorden playing football, baseball, and manhunt with all his friends was such a great thing. Jorden was back to fully being a kid again. Thank you everyone for coming by and wishing him well.
We flew into Houston yesterday and today was the first day of a week full of scans, tests, and consultations with the medical teams.
We want to say; thank you from the bottom of our hearts for all your prayers, and support during this time. We can truly say that we couldn’t have gotten this far without it. Please continue to pray for Jorden as we get closer to his surgery date of May 31st.
During our time in Houston, our home away from home will be the Ronald McDonald House and thank you Michele for taking care of our home back in Orlando.
As I ended our last post Jorden was invited to the Dr. Phillips High School baseball game. When he woke up that friday morning we met with Coach Al Osuna for a 45-minute throwing session at the Dr. Phillips Little League fields. This was actually a great confidence builder in preparing Jorden to throw out the first pitch. Thank you coach Al for your time.
Later that day Keyshawn and Sean walked to our house from school to spend time with Jorden and accompanied him to the HS baseball game. Jorden at first was invited to home plate where Coach Bradley presented him with a check from the Little League Day fundrasing event. Thank you everyone who attend that day’s event. He then made the walk to the pitching mound. He first stopped at the base of the pitching mound, turned towards home plate but then continued up to the pitching rubber. He made a strong throw to the catcher and was cheered by all. Congratulations to District Regional Champs DR. Phillips High School Panthers!
Also during his time at home Jorden was able to catch a few of his team’s Little League baseball games and had fun working the concession stand (thank you Miss Rita and Miss Amy). Enjoyed time with family and friends and also had a great visit from his brother and Alondra, who he loves so very much.
Despite low blood counts, some days with headaches and needing a transfusion. Jorden has had a great week. Jorden returned to the hospital yesterday for round 10 of chemo; which will be his last round of chemo (for now) before heading to Houston.
Jorden is so strong, and has been such a trooper. Thursday night he said that he has had so many experiences because of his cancer, and is thankful for all of them. He knows what he has isn’t fun, he can’t do all that he wants to do – but he continues to find the positive in each day, and we do the same. We know that we are fortunate and truly blessed.
Thank you all for all your continued thoughts and prayers.
Jorden completed round 9 of chemo Sunday evening, once again he was able to get through the round without any issues at all. He was doing so well, that the doctors took him off of the puck-meds late Sunday night. Jorden was feeling great Monday and blood levels were good, so the doctors decided to released him from the hospital that afternoon at 3pm. This was the fastest release from the hospital, we checked in on Friday started chemo that night at 6pm and he was out and back home by 4pm Monday.
Jorden is enjoying time at home with family and friends. On Monday he spent the evening with aunt Shirley and uncle Hassan. On Tuesday Sean came over to visit, the boys spent time playing ball outside and enjoyed pizza. On Wednesday he had a visit from Kayla before they both cheered on his Red Sox little league team as they played a great game against the Angels. After the game Jorden grabbed his glove and went on the pitching mound and pitched a few with Nelson. His arm is still strong and it was a great site to see him on the ball field. Today Jorden went to lunch with friends at Gators. This was the first time since being sick that Jorden played the games there with friends. After we stopped at Windy Ridge to pick up some school work. Another first for Jorden, walking into the school. Jorden was welcomed with hugs and love and was excited to see his Windy Ridge family.
Tomorrow Friday Jorden has been invited by the Dr. Phillips High School baseball team to throw out the first pitch before their District Championship game against Boone High School. The first pitch/game starts at 4pm so if you can make it, please stop by Dr. Phillips High School and show your support.
Jorden has a clinic visit on Monday and then he goes back on Friday May 4th for his last round of chemo before surgery.
Jorden continues to be blessed through this whole process, our boy is getting better, stronger and wiser.
Thank you for all your support, thoughts and prayers.
Jorden completed round 8 once again like a champ, with no pain and or side effects. He continues to have a hearty appetite and is actually gaining weight through this whole process.
Jorden is excited to be home. This wasn’t the best time to be in a hospital, over Easter but we made the best of things and enjoyed our day, with a small Easter egg hunt in his room and visits from the grandparents. Jorden even made Easter goodie bags for his nurses that cared for him that weekend.
While in the hospital a little league day at Dr. Phillips High School took place. Thank you Chad Wood; we appreciate all that you are doing for Jorden and our family.
As you know we have 2 more rounds of chemo, and then head off to Houston. We are starting to plan for that, as well as our extended families, so that we can continue to support Jorden in Texas.
Upcoming events for Jorden are school sessions with Mrs Suriano, hospital tests and blood work on Monday, and a return to the hospital on Friday April 20th for round 9.
God continues to hold Jorden close to him and is listening to all of the prayers. The power of prayer is amazing, thank you for all your continued support and prayers.
On Tuesday March 27th, Jorden returned home once again, with seven chemo treatments now complete.
Jorden was welcomed by his cousins Jennifer (and baby Jace) and Lauren. He loves his cousins so very much and is always excited to spend time with them.
Thank you Jordan, (Jennifer’s husband), and her small children Luca (1) and Elle (2) for letting Jennifer spend time with Jorden. We love you and miss you too. And thank you Lauren for flying in from NY to visit him.
On their last night Laruen and Jen took Jorden out to the Elephant Bar & Grill for dinner, while Nelson and I had fun babysitting Jace. The three went out in Team Jorden T-shirts and enjoyed a very nice dinner. They felt like superstars when a very kind anonym’s couple picked up their tab, Thank you kind person!
Jorden is enjoying his days at home, spending time with family and friends.
Last night he colored Easter eggs and asked Nelson to comb the town looking for his favorite jelly beans.
Jorden returns to Arnold Plamer Hospital Tuesday for a clinic checkup, and Friday April 6th for his next round of chemo. He will be in the hospital over Easter, but is accepting thing as a true champ.
Since our last update we have had a schedule change. We will now fly to Houston May 20th for tests and prep, for a May 31st surgery.
This week we went to Houston’s MD Anderson to meet with the medical team there.
Thank you Ms. Suriano and Windy Ridge school for an amazing “send off”. We loved the cheers, the band and smiling faces as we headed off on our Journey. A big thank you to Gayle who continues to sell Team Jorden t-shirts on our behalf. Thank you to all the students, teachers and parents who continue to support us every day. Thank you to all of Jorden’s friends and family that called and visited to wish him good luck on his tests.
We flew into Houston late Monday evening and stayed at the Ronald McDonald House, what a wonderful place. On Tuesday March 20th Jorden had a long day of scans and tests. While Jorden and I were in prep for one test, Joanne met the mom of a boy who has the same type of cancer as Jorden and has had the same type of surgery that Jorden will have. It was so nice to meet someone like “us”. And the great thing about Cole is that he had his surgery last year, and is doing fantastically well, he is back in school and playing both soccer and baseball. Jorden was able to hear about his journey, ask questions and spend time with him playing video games, billiards, Ms. Pac-Man and eating dinner together. We look forward to staying in touch and building on our new friendship. “I believe this is another angel sent from God to help Jorden through this journey”.
On Wed March 21st we were welcomed by a very upbeat and positive MD Anderson medical team. Dr. Anderson was all smiles as he discussed Jorden’s scan and current state. We were also able to spend some time with Dr. Hayes-Jordan as we discussed surgery dates and next steps.
Jorden’s tumors continue to decrease. He is responding so well to the chemo that Dr. Anderson recommends 5 more treatments over the next 10 weeks. The plan is to reduce the tumors even further to make for a safer and easier surgery in June. So we will be starting chemo week 7 this Friday March 23rd with his last round of chemo week 11 starting Friday May 18th. Surgery in Houston will be on June 7th.
Also during the time from now until June 7th Jorden needs to get “SURGERY READY”. He needs to walk, throw & catch, and safely exercise to get in condition for the surgery. We are so happy, so grateful, so thankful, so blessed by God and in such awe of our son Jorden who amazes us with his strength and faith each day.
Thank you everyone for your continued support and prayers.
Jorden completed round six of chemo which was a five-day treatment this past Sunday like a champ, no issues, no pain and in very good spirits. God is GREAT and the POWER of prayer is amazing.
We celebrated this major accomplishment with a congratulations cake, cookies and visits from many of his friends and school mates. It was a very great feeling and emotional for both Joanne and I to see him surrounded by his friends all laughing, smiling and playing in the family room at the hospital. We are so truly blessed.
Jorden’s blood counts were good and an MRI that was taken Monday evening all came back negative for blood clots and was released Tuesday afternoon. Praise God.
He was invited to the Magic/Heat game Tuesday night; he attended his little league game last night and enjoyed dinner with friends this evening. It is nice to be in a normal routine, enjoying time with our family and friends who we love so much.
Jorden was asked to complete six rounds of chemo in a 12 week timeframe. This was a very aggressive chemo plan to address a very aggressive illness. All rounds were completed on schedule with no delays, which the nurses informed us was amazing.
The February PET scans showed great results, and the doctors said this week that “it’s harder and harder each week to feel the tumors in his abdomen”. So, we are now ready for Houston. There Jorden will have additional scans and we will meet once again with Dr. Anderson and his team. We are hoping that they approve him for surgery, and that we can continue in this positive direction in Jorden’s treatment.
Thank you all for your thoughts, prayers and well wishes. We could not have gotten this far without them. We are so blessed to have Jorden’s health, your support, love and friendship. Most of all I thank God for taking care of my son, giving him strength, and continuing to heal him.
As Jorden sleeps after completing day two of his five-day treatment, I reflect on this incredible journey – and think back to where we were on Dec 21st, and where we are today. We have been so blessed and so fortunate that Jordens health improves each day. I am nervous, yet excited and hopeful regarding our upcoming trip to Houston this month.
As I reflect on how blessed Jorden and our family have been, I am humbled and I know that I have so many people to thank for their kindness, love and support. Todays post is dedicated to all those who worked so hard on all the “Playing With A Purpose” fundraising events. Thank you from the bottom of my heart, for all that you have done and continue to do for our family. You all have allowed me to focus my entire time and energy on Jorden.
When Diane Petit called me in the first few days of Jordens illness and asked if she could put an event together to help us and Jorden, my first thought was “no” we will be okay and can manage on our own. While on the phone I listened to Diane’s words and said “yes” – thinking that an event for Jorden could boost his spirits and reassure him that he is loved and not forgotten.
I am so glad that I said Yes. In doing so, I could never have imagined how things just took off from there and how through Diane’s vision, direction and leadership a community would work so hard on our behalf. Thank you Diane & John Petit, the Crumps, the Mills, the O’tooles, the Bambeis, the Henselins, the Finns, Susan Barrett, Carol Gay, Christel Furry, Bob Chuhak, Jose Esteban, FTB Baseball, Al Osuna, Bill Reynes, Amy Figeroas, Shirley Aponte, Keith Kocarek and everyone who donated time, food, auction items and participated in all the days events. You all have been so wonderful. May God Bless you and your families for all of your hard work and loving support.
The Friday after the “Playing With A Purpose” game and silent auction, Shirley, Michael and Keith led efforts for a second event; a casino night and silent auction. Thank you to Shirley Aponte, Pam Follet, the Kocareks, the Finns, the Torch Relay team, Marriott Vacation Club, Marriott World Center and all those who attended, donated and provided support.
I would also like to thank all those from Windy Ridge, Cypress Landing, Gator’s Dockside, and the Wolves 9U travel ball team. You have all been so amazing with your love and kindness to Jorden and our family.
Our family has been so blessed; Jorden is doing very well! We have a long road ahead – but you have all made our lives easier, our worries less, and our hearts Big.
Thank you!
Posted by Joanne
Here’s are some photos from Dr. Phillips Little League’s first Playing With A Purpose fundraising event (Feb. 10th-12th):
Jorden completed round 5 of 6 early Monday morning. He continues to do well with the treatments and is looking forward to completing round 6 on March 13th. During this week’s chemo Jorden had a few surprises. The first is that his body is reacting to the chemo port. So what is happening is that his body views the port as a clot or “vascular road block,” and what it is doing to compensate is creating new veins to bypass the port. As innocent and interesting as this sounds, it was a bit of a stressful week undergoing various tests and x-rays to ensure that there were no blood clots for real. With Jorden’s new “vascular highway,” he is also noticing some swelling and pain in his upper left chest and shoulder. They also did a few x-rays to ensure that his shoulder pain was innocent as well; thankfully and praise the Lord it was! Jorden is home now and is excited to spend time with his family and friends.
Since Jorden wasn’t able to attend last Sunday’s opening ceremonies and silent auction, he is really looking forward to attending tomorrow’s “Playing With A Purpose” fundraiser event hosted by The Torch Relay at the Marriott World Center. Jorden told both Joanne and me “this event is inside, so I am not going to miss it.” Again a display of his determination.
Thank you everyone for all your continued support and prayers; Joanne, Jorden and I truly know that they are making a difference. Special thanks to the Dr. Phillips Little League community, The Torch Relay and Marriott Vacation Club who have taken the lead on these events. We hope to see you there!
In Loving Memory of Jorden’s Grandpa, John Manicone 6/28/34 – 2/16/12
You can also mail checks made out to "Playing With A Purpose" to the following address:
Torch Relay
Attention: Playing With A Purpose
PO Box 692589
Orlando, FL 32869
Jorden’s Treatment Schedule
Chemo 10: Complete √
May 22 - CT & PET Scans √ May 23 - Consultations √ (Scans showed improvement after last 4 chemo treatments!) May 24 - EKG, echo, chest scans May 25 - Labs & consultations May 30 - Admission & surgery prep
