Yuri's Son - Surgeries Ahead
Our Family on behalf of Andrew's Family.
Thank you all for taking the time to follow Andrew's progress, for donating funds to help him have these life saving surgeries, and for all your incredible support. I've been terrible at posting updates, and this one, well, this is a hard one. I hate not being able to share good, cheerful news. We knew this day would come, it just came far sooner than we thought it would. Last week our surgical team found another tumor. Thankfully we have regular scans so we think we've caught it before it caused major structural or vision damage. Because of the aggressive and damaging nature of the tumor and it's extremely rapid growth, we must rush into surgery ASAP to remove it. I wish I could tell you that a reoccurrence of this type of tumor is always benign, but at this point, it's not a good sign that it's come back and grown so large so quickly after our first surgery. Right now, all we can do is prepare for this next surgery, and pray that the pathology results once again rule in our favor.
Right now we're in quarantine, rushing to tie up loose ends and be ready for another long hospital stay and recovery. At least this time we know what to expect, and how to best prepare for these things. We're not sure how much damage it's caused or how much plating we'll have to build up or replace. Thankfully we have full trust in our surgical team and know they'll do whatever it takes to get it all out. From there, it's just a waiting game.
The team has also informed up that they will be publishing articles about this tumor, and Andrew's journey. We are also trying to get a site up to document our journey as a family as well as the medical information. When we were first diagnosed, there was nothing out there. At least nothing in English. Andrew is still the 5th ever documented case in children, so by publishing and posting a site, I'm hoping to provide comfort, support and information to anyone who may need it.
I will post updates as we go along this week either here or on Facebook. Thank you again for your time and donations. Without your help and support, Andrew wouldn't be here today.
With thanks and love,
The Pettengill Family - Paul, Yuri, David and Andrew.
"We are beyond humbled by the generosity of the hundreds of people who have donated to help our baby. Thank you from the bottom of my heart for making his first surgery possible.
Andrew underwent surgery last week to remove the tumor, which ended up being much larger and more damaging than previous estimates. The surgery was a little more than 5.5 hours long. The surgical team ran into complication after complication, and we had to make some tough calls throughout the surgery. The tumor ended up being a huge solid mass encased in a gelatinous surrounding which spanned almost 4 inches long! It has completely eroded the orbital bone, nasal bones, cheek bones and his adult teeth buds. Because of the bone damage, they had to create custom dissolvable plates to give his face structure and protection. In order for them to do all this, they literally had to lift his skin, anchor it, and go through his eye and mouth to access the tumor. They rebuilt the orbital structure using custom plates and inserted 4-5"s of stints to prevent his tear ducts from collapsing back. They stitched his eye shut to heal and we were in the PICU for 4 days of pain, screaming and crying. Thankfully we're home trying to manage the pain and heal enough for the next stage.
Now we wait. We have to wait in the pathology of the solid tumor to figure how quickly we need to move towards radiation or our next surgery. We have to wait for him to heal enough to schedule the first of many reconstruction procedures. We wait to see how much scar tissue will form and how much structure it will provide before we can plan for bone grafting. We have to wait for him to grow enough to have enough bone for bone grafting. We have to wait to see when the tumor will grow again...which it most likely will considering the aggressiveness and tenacity of this type of tumor. All these things we have to take day by day. He bumped his face yesterday and we spent the day in the ER trying to control the bleeding from his ruptured stitches. Today, all we can do is manage his pain which is pretty severe, and keep him at home to avoid infection risk.
We're thrilled with the care and surgical expertise of our team at Lucile Packard Children's Hospital. They went the extra mile to perform a terribly difficult surgery in order to avoid external scaring and deformation. To call them a dream team is an understatement!
Even though this initial surgery is over, we still need to find a way to pay for it. We also still need funds to cover all his post care, treatments and multiple surgeries to come. It takes a village to save one baby boys face. Please share his story and thank you again for all your support. - Yuri and Paul"
I am now sharing the update in hopes of you seeing a full picture of what this family is gearing up for. Any support small or large is appreciated. Hugs, Texts- Anything. Please share with our friends.
"Little baby Andrew is only 22 months old and has a very rare tumor called Fibromxyoma. There's only been 5 cases in the WORLD, EVER, of children with this kind of tumor. In fact, it's the first in the US of a child having it. It's a super aggressive and fast growing tumor that has already caused permanent damage to his little face. His ocular bones, sinus cavity and cheek bones have all been significantly altered and perforated by this tumor. This tumor needs to be surgically removed, and even with removing large margins, we have about a 50% chance or reoccurrence. So sadly, this will most likely be the first of many surgeries and treatments that he will need.
We've moved all our are to Stanford, where we have an incredible team of doctors who are working our case. Our team consists of a Pediatric Oncologist, Pediatric Craniofacial Plastic Surgeon, Pediatric Ophthalmologist, Pediatric Ophthalmology Plastic Surgeon, and a Pathologist who's a specialist in rare soft tissue tumors. Not to mention all their staff who's worked tirelessly to solve this mystery and to find out of the box solutions to cure our baby.
Andrew now has to go through a major surgery to remove the tumor and the surrounding bone that's been affected. The tumor is frighteningly close to his optical nerve, many critical facial nerves and to a major artery that supplies blood to his brain. We have to remove the tumor, and we need to do it quickly if we don't want it to double in size again. If that happens, he's at risk for blindness, holes between his nasal cavity and mouth, stroke and losing all facial movement on his right side. Because of the urgency to get him into surgery, our team has agreed to come in on their days off, shuffle their schedules and do whatever they need to do to get him in stat and to save his little life. He will receive facial plates to support his facial structure and we just need to play it by ear once surgery begins to know what else we will need to ensure that he doesn't suffer any further permanent deformities.
Thank god we're insured...however, our PPO surprisingly only covers a small percentage of what we will need to save Andrews face. Because of the type of insurance, we estimate our portion of this surgery to be around $75,000. That's not including what we will need for sitters for David, food, gas, expenses, not to mention post care follow ups and monthly MRIs with anesthesia!
We hate asking for help, but at this point, our egos and pride are nonexistent compared to our fears for Andrew and our desperation to save our little boy. I know times are tough for so many of our friends and family. If there is anything you can give to help Andrew we would be so eternally grateful.
We will be updating everyone as we go along, but for now surgery is March 15th.
Thank you to everyone for their thoughts, prayers and kind words. It really does take a village and we're so lucky to have each and every one of you in our lives.
Paul, Yuri, David and Andrew