Tony's Transplant~ The Final Stretch
Ok Warriors: (PLEASE READ)
Here is what we have been praying on and in need of your help! This is one of the many we have been praying about and are in need of your help!
Just like the President of the United States provides a “State of the Union” address, so does the Forte Family!
As many of you know, our son Tony (at 12 years of age), is coming up on his 1 Year (4-organ transplant) Anniversary!
Having the parents of the child who - through their unbearable grief - said “YES” to organ donation, while still grieving the loss their own son, will be forever burned into our hearts.
So where are we a year later?
We’re still in Florida, and only God knows at this moment just how long that will need to be the case. Tony’s organs of (i) stomach (ii) small & large intestines
and (iii) pancreas are all doing extremely well, and the transplant team couldn't be happier. What has everyone –including the transplant team - puzzled is Tony’s immune system; for whatever reason, all of a sudden he’s now showing signs of Aplastic Anemia, a condition where your bone marrow stops making cells your body needs to fight off infection.
Because of this, Tony is - along with his transplant team - now being evaluated by Bone Marrow Specialists for a possible Bone Marrow Transplant if the current treatment in his treatments. doesn't improve.. Soon both of tony's brother's Vinny and Dominic will be tested too see who will be the match for Tony. This will require either Vinny and Dominic going into surgery, obtaining their bone marrow and then have it processed for Tony to receive their infusion, following the infusion Tony then will need to be hospitalized for at least a month on the Bone Marrow Transplant Floor hence no other complications that may arise.
Tony was hospitalized for 3 months through July, and while his transplant team (and now the bone marrow team) try to figure out what is going on, Tony’s WBC (white blood count) is currently remains at 0.0 (on a scale with a normal range between 4.0-12.0)! To begin to get Tony better, he will be receiving platelet transfusions (along with additional labs) as we wait to see if recent treatments are helping to improve his condition. Despite all of this, Tony has the energy, strength & determination of an Ox!
Going into a transplant with our child, we roughly knew the ‘pros and cons’, and ultimately what to expect. To be honest, transplant was the only option we had left (before additional organs would’ve started showing signs of failure). For us and the team, transplanting Tony while healthy was key, and largely why (for the most part) Tony’s recovery has had only minor bumps.
Transplant is never meant to be a cure, but only to enhance the quality of life; and in Tony's case, it sure has. He has been able to eat full meals without becoming sick. He is now able to freely swim and shower, whereas before - having a central line that came with the high risk of infection - that was a no! He is able to be free of his 20lb backpack which carried his sustaining IV (for nutrition) because his body simply couldn't do it on his own. In short, Tony’s overall transformation this past year has just been nothing short of amazing.
Unfortunately despite this, now with the challenges we still face of his immune system being comprised, the need for us to stay near the hospital is more critical than ever. Our temporary ‘campground home’ – a campground near the Hospital in Miami - has provided Tony and our family such a respite and peaceful environment; the serenity and the scenery has truly propelled Tony's recuperation immensely. While hospitalized, the idea of going home to the campground gave him motivation and the will to keep going (his strong will - for those of you who personally know Tony – is incredible given that he’s only 12yrs old).. Back in April, it truly broke his heart when a family he became close to left the camp ground, and he couldn't be there physically to say goodbye before they departed.
This campground at this point is the only ‘constant’ along with his immediate family (I, Daddy, Vinny and Dominic) he has to hold onto. Tony has met such beautiful people and families, who - like you - are inspired by his tiny being and the journey he has had to (and will still have to further) endure. This is why we are asking for your help...
The woman who temporarily lent us a beautiful RV last fall is in need, and requires it back by the end of this month. She is extremely sad and heartbroken that she can’t continue to help to us, but unfortunately our unique situation puts us in an incredible bind. Tony loves this RV & the campground more than anything, so much so that we started immediately searching for a new ‘campground home’ to replace it - which we have now found.
Through an RV website that promotes private sellers, we located one within a 20 mile radius of where we are. It’s a one owner, 2017 Keystone Sprinter asking $30,000 obo, (He cut the price that he was originally asking in half in order to help us) far cheaper than what we are staying in currently. Even so, our financial situation - as you can imagine - has been hammered.
As with any loved one who has been enduring a chronic illness for years, both society and our government does not make it any easier. Therefore, fundraising is the only way we have been able to make it this far. The recuperation cost for tolls, meals, gas, accommodations, etc are not covered by any means of insurance; hence the need for fundraising these past 8 years, and why it has been the key which enabled us to get Tony (safely) to where he is today.
Those donations over the years helped us immensely - in traveling to and from Hershey where he was diagnosed, out then to Pittsburgh where for over the past 5 yrs we traveled many a mile only to wait for the call that never came, then to Ohio where the Nationwide Children’s Hospital confirmed Tony’s zero-motility, and ultimately to Miami for the transplant. None of the above would have happened wihtout the compassion and generosity of so many who came to help us during our time of need. To all of you ~ WE THANK YOU in helping us save my son! We will be forever indebted to the countless people who have got us to where we are.
While it pains me to again ask for help - when I know so many have already given – I too am a giving person, and will give my education/talents/caregiving/ thoughts/will and physical labor to any charities, friends and families that are close and near to my heart; that is, until I’m able to give back monetarily, as I would like to do! We would like to purchase this RV (the sooner the better) so that we can relieve this pending burden of losing our current RV/home, and once again focus solely and purely on Tony’s recovery. We have a Special Needs Trust where donations can be made - the Antonio Forte Transplant Fund Trust – (through PNC Bank) where every recuperation expense comes from. That account protects Tony from losing his SSI and critical benefits. For anyone who makes a donation, we will gladly furnish a receipt for their tax purposes.
This RV in the long run will provide us sanctuary in an environment that is ours, and Tony’s compromised immune system will be safe as we ride out the remainder of his recuperation. We know once we have more follow up appointments and trips to Miami after returning home, this option will the best – and least expensive – in the long run.
I pray that my vision will soon come, when we can finally return home; where - in a big gathering - everyone can come and fellowship in the return of Tony and our family. We miss and yearn for this so much, the thought of that day has to propelled Tony's recuperation and we want to personally hug each and every one of you to thank you all for caring enough to make him a success!
As with any major life event that comes your way, there is no book on the shelf that can tell you all the how’s / the when’s / the why’s of it all, and there is no amount of preparation one can make or do to prepare. We all have faith and hope that it will turn out the way we want & need it to, but - in the end - no one knows.
Until then, may God’s blessings shower you all in his grace! And thank you for anything you can provide which helps us to secure a safe and temporary home for our family, and for Tony’s recovery.
Monica xoxoxoxo and or family