Tony's Transplant's Final Stretch
Tony received his life saving transplant at the age of 11 at the Miami Transplant Institute on August 23rd, 2016 after waiting on the list
for more than 6 years at other locations and the transplant itself was a success.
Now fast forward to July 2017, Tony (now 12) and us (his family Dad, Mom, and older brothers Vinny and Dom) are still in Florida due to the fact that Tony's immune system is having a hard time rebuilding itself as it was depleted following the surgery so his body could accept the new organs and not go into rejection.
He has had two bone marrow biopsies that have resulted in signs of "Aplastic Anemia" a condition where your bone marrow stops making the cells which is vital in keeping your immune system healthy and to fight off infections, instead Tony has a comprised immune system therefore any virus or sickness could put Tony in a critical and serious situation. Currently, Tony's white blood cell count remains around 0.0 consistently where as it should normally be anywhere between 4.0 to 12.0. This was something that shocked us including his transplant team.
During a recent 3 month hospitilization from April to July, Tony was given multiple rounds of a heavy duty drug called Campath to hopefully help boost and restore his numbers, along with frequent blood and platelet transfusions. However this treatment takes time to see if it will work, up to 6 months. If this treatment does not solve this issue, then a Bone Marrow Transplant may need to be preformed. (Ideally this donor would be a sibling or a family member.)
Tony's older brother Dominic (14) is the same blood type and may be a perfect match for a donor. This would involve Dominic or suitable donor ( O neg) being hospitalized, taken to surgery to extract however much bone marrow is needed then transfusing it into Tony so his body can use that to create new cells and build his immune system. Tony would then be hospitalized on the Bone Marrow Floor for at least a month to make sure his body accepts the bone marrow and that there are no further complications.
Currently at the present time Tony receives weekly transfusions via his PICC line and has been going to the Holtz Children's Hospital in Miami. He will now receive twice a week platelet infusions to maintain his hematology levels. This will require a day long stay in their PICU Special Procedures Unit for the infusions to take place. He has also been receiving IVIG to help his weakened immune system and with results of labs has from time to time received blood transfusions! Without these infusions Tony's own body would not be able to keep up and therefore could be fatal if not treated!
For more info on Tony's diagnosis and medical journey since 6 days old please visit www.aftft.com or you can call Mom just private messsge her and she'll gladly fill anyone in .
Current situation and why we need your help!
For nearly the past year we have been residing in a Fifth Wheel Camper that was lent to us, by an anonymous woman who out of the kindness of her heart after hearing our story wanted to help us and greatly has and just recently with the generous donation from an anonymous donor who purchased an RV that we can reside in at C.B Smith Park in Pembroke Pines, FL about 30 minutes north of the center in Miami to help with our housing situation while we patiently await for Tony's system to improve, we are extremely blessed for their compassion and aide through our journey!
This RV and Campground has quickly become our second home which is perfectly situated from the hospital and where our Dad works, it has been an integral part of why Tony is so successful through this journey as he has been able to make new friends and bonds from fellow campers thanks to his outgoing personality, where he can recover in a setting that is both serene, very peaceful and familiar. Residing in at this campground has been the perfect setting for his recuperation where he is not susceptible to other's illnesses or germs which could be catastrophic.
The motivation the campground gives him alone has propelled recuperation and why the need to stay here is so great. Leaving here would break his spirit and would greatly impact and affect the outcome!
Staying at this park has also permitted our father to keep his employment as the company that has a facilty nearby has been able to temporarily transfer to since last September. Almost all of our Father's earnings go directly to bills to maintain our home in PA which we hopefully will return to which is another driving force in maintaining Tony's motivation and goal that has propelled Tony's recuperation in thinking about "coming home" !
Maintaining our fathers employment is also crucial as Tony's medical coverage is through our father's insurance from his employer (PA Medicaid doesn't cross state lines).
However insurance does not cover post transplant recuperation expenses such as lodging, gas and tolls, food and groceries, etc. Which we have had to do since last August as well as maintain our permanent house in Lancaster, PA.
Our residence back home has also been an vital in Tony's recuperation as it has propelled his motivation to get home. We will also use the camper when travelling back and forth as Tony will have future appointments in Miami with his Transplant Team every 3-6 months to ensure that the status of his transplanted organs and overall health is being maintained.
Tony's post medical care must be with his transplant team here in Miami. Although his transplanted organs are doing great at the moment, in a moment's notice things can change and with the delicate balance of tweaking his current regime of medications while aiding his immune system along with treating the EBV with medications and infusions, its impossible to think about returning back to PA anytime soon and why staying here at the campground near the hospital is so vital for a successful outcome.
All donations that come through our GoFund Me are linked to his Special Needs Trust: the Antonio Forte Transplant Fund Trust. Any private donor or company who wishes to list their donation as a charitable donation by their request will be furnished with the proper documentation for their year end tax purposes!
Even the smallest of donations would greatly be appreciated and would make a big impact to ensuring our efforts to make Tony's life changing transplant a success. Our motto has always been :
"No donation is ever too small!"
If you, yourself are not able to make a financial contribution then please consider sharing this campaign on any social media outlets you may have such as Facebook/Twitter/Instagram/Pinterest/Google/
Email etc. Or send it directly to friends/ family/businesses etc who may be able to help share and donate.
As always the love, prayers, thoughts, and well wishes from friends, family, and the supporters of Tony and our family are always extremely appreciated!
We cannot wait to bring a healthy and new and improved Tony back home to PA!
Tony had tested positive for a blood culture and prior to the preliminary results was started on a routine course of IV Antibiotics... He was admitted to the PICU for observation but was soon transferred to the transplant floor where he developed swelling of his right upper palette and face, pain, fever and when looking at his upper palette that was so swollen that we insisted seeing the Ped Oral Surgeon and Ped. ENT docs where upon their examinations agreed that his history of his compromised immune system, EBV and fungal recommended that his tonsils and adenoids would need to be removed and with him in surgery would also place another line for access. However the teams would have to wait until Tony presented with negative blood cultures before he would receive clearance for surgery.
On Friday, October 27th , 2017 Tony went in for surgery which all went well, we found out that he didn't have his adenoids therefore his surgery consisted of an IJ placed and removal of his tonsils. He recovered in post op and was transferred back to his room with freeze pops and slushies waiting him.
However during the evening he developed a post op fever, and a cough that we associated with the soreness of the surgery . As shift changed in the morning, Tony was still coughing and his stats started to drop that our nurse decided to have a fellow from PICU come to evaluate Tony as well as Respiratory... among their evaluation it was warranted that Tony needed to go to PICU as he had the starting of septic shock with a bacterial infection.
Once there Tony's stats started to drop especially his O2 both on CPAP and Nasal Cannula that it was decided Tony needed to be intubated.... Seeing Tony lay helpless with him not being able to speak and being sedated was the worst for Steve and I and those who knew him at the hospital, as he never required to remain intubated... thoroughout all of his surgeries other than the initial 1st one when it was discovered he suffered from Total Colonic Hirschsprung's Disease. All his other major surgeries he would always be extubated and wide awake..
Thru the evening an into the earlty morning hours Tony was very critical with many labs either elevating or declining, the PICU team here was more than phenomenal, they are angels all who saved Tony's life.
Tony's compromised immune system has made him very suspectible to just about everything.. We are blessed that Tony's EBV is all but gone thanks to the removal of the tonsils and the treatment he's been receiving and the BK Virus is being treated and will soon be on its way out. he's still being treated for the fungal with the hope that with the treatment hes been receiving that too will be gone as well.
This journey of transplant has been a world wind of many triumphs and some defeats however we have truly seen what our family is all about especially when faced with the odds. It was discussed that to help Tony improve that he would need to have a surgery for a trach... but that soon was about to change that didn't require any interventional medicine instead it was divine faith that our family has and that has ALWAYS remained a priority.
That divine faith allowed the postponement of said trach due to his body responding with a positive blood culture and then GOD must've spoken to Tony while I was asleep because he pulled the tube and extubated himself...since then slowly he has been improving...regaining his strength with goals in mind (using his urinal/sitting in a chair/sitting in the wheelchair) and soon back to the transplant floor of 5B.
He has made such significant strides n just a week from his self extubation that really has inspired all who knows and loves him here at the hospital and those who have followed his journey. We as his family is extremely blessed for him in our lives that we CAN'T imagine our lives without him!
The long term:
November 23rd will be 15mos since Tony received his monumental 4 organ surgery. Our goal as a family is to be able to head home back to Pennsylvania, we are all homesick... currently, with Tony's immune system we have no inkling as to when that day will come, however we pray everyday we will be able to return real soon!
Because of his lengthy admissions and our need to stay near the hospital its imperative that we need to keep the fundraisers going... As you all know insurance has NOT paid any of his recuperation following the surgery. The only time the insurance pays for anything is when he needs to be admitted/his clinic visits and life-long medications.
We CAN'T begin to even fully explain what and how we feel about everyone's compassion and willingness to help our situation. Whether its $5, $10, $25 , $100 or like the anoymous donor who bought the RV so that we have a place that feels like home while giving us and especially Tony enjoyment, comfort, serenity and the peace he needs to have a successful recuperation.
Tony and I are hopeful that we will be able to be discharged back to the campground soon, however until then we want to say THANK YOU and extend our love to you all who have prayed/thought/supported and has the willingness to help our family!
We will update as time permits!
Have a great and wonderful Thanksgiving!
Much love from us Forte's xoxoxoxox
Cultures/Labs and Precautionary antibiotics Vanco and Cefepime antibiotics started... received hugs from our WONDERFUL team of 5B Nurses awaiting our arrival from Pedi ER!!!
Tony had an EKG, he'll have a full body CT scan tomorrow and we have a consult with Bone Marrow for a full work up to make sure nothing is being missed. EBV number is trending down so very good sign. We'll keep everyone posted! Otherwise, Tony is doing good just resting, was hugging his nurses and cracking jokes!
EBV number is up so team is taking him off both Prograf and Methyprednisolone, the last two meds for anti-rejection! His organs are working perfect. They believe since he's getting too much of pre-medication with steroids per infusion along with his daily regime of anti-rejection meds it is why the EBV number can't come down and his immune system of his WBC and platelets can't repopulate!
So as the saying goes "Never go against your first instinct!" the gut saves the day again, and in our journey mine has NEVER failed him! We Thank God he gave us signs indicating Tony's platelets were off and needed admitted!
After being admitted and labs were drawn his platelets were at 4!!! , normal range (150-450) and that's after his infusion this past Wednesday!
So, during the wee hours of this morning (8/14/17) he received his infusion of platelets along with his IVIG , his WBC was 0.1 which we will take since his last spike was on 6/29/17. All other labs are good as of this morning, and with that we are free to go back to the campground.
We will have possible two infusions per week due to his low immune system, he will be monitored closely for EBV as well as his immune system, with the new changes, we pray for improvement, otherwise Tony is handling it well as he always does, he's truly amazing !
Thank you all for us in your prayers ! We will keep everyone up to date and posted as time permits!
Because of our extended and the request of our donor who helped us immensely with the RV, we are continuing this gofundme to help with his recuperation costs: this would include the monthly fee here at the campground, tolls, food, meds, co-pays etc...
Any company or donor wishing to donate a sizable amount we can furnish the charitable donation paperwork at the request of said donor.
Any donation is accepted and GREATLY appreciated! EVERY donor has given us peace of mind in helping us aide Tony's recuperation near the transplant center here in Miami. Thank you all for sharing our journey with others...
The Fortes xoxoxox
We are definitely in a marathon like what Dr. B stated just two days after his surgery, we are hopeful that Tony's immune system will start to improve, still awaiting lab results on EBV.
We are grateful that he can relax at the campground- with the heat here in August that's all we want him to do! It makes us well with tears of emotion the amount of love we receive from you all! The peace of mind having a place to stay with the RV from our donor just leaves us speechless! We are humbled beyond words!
The last week we have been settling in the new RV, hard to believe what we accumulated here in a year, my family and I will be forever grateful too so many. All of you have gotten us to where we are today. You all have played an integral role throughout this entire journey and we are so blessed to have you all in our lives!
With the complexity of his immune system and blood work we will have to be admitted tonight as we think Tony's platelets are low and maybe too low to wait till this Wednesday's transfusion. Going in briefly just for a tuneup!
We will keep you all posted!
Many of our prayer warriors are going through their own struggles, we are mindful of your posts and please know as much as our family is among your prayers, you are among ours as well!
Victor- Thank You for your donation! We appreciate your heartfelt prayers and support!
Norma & Art~ We love you both immensely and so miss our "Cropper/Castellucci's" get-together's !!!! ((((HUGS))) ALWAYS!!!
Thank You Ella! We appreciate your support and generosity! ♥
To Anonymous: From the bottom of our hearts your donation to help us in our great need is so much appreciated! ❤️
To anonymous: From the bottom of our hearts, THANK U!
Carey- Thank You for your constant love/support /compassion and prayers!
Stephanie & Chuck- I don't think we haven't met, but THANK YOU from the bottom of our hearts!
Thank You Becky for your love, compassion, prayers, thoughts, support and generosity!
Thank You Brandon and family for your constant love , thoughts , prayers and support! xoxox
Thank You Claudiafor your love,compassion, prayers, thoughts and supports and generosity!
Thank You Kathy for your love! We are humbled by all the prayers , thoughts , compassion , support , generosity and words of encouragement which fuels are determined spirit to get him crossing this finish and home! He is made whole in Jesus' name and are truly blessed! Much love and blessings and here's to counting down the days on the other side of 6 in getting him home! Lovingly, The Forte Family!
Thank You to the Fisher Family for your generous donation! When we have the "official" green light for home- we hope too see many great families and community members such as yourselves at many a ball game! Much love and blessings! Lovingly, the Forte Family!