Elena's Diagnosis & Schooling
We now know that she has Eosinophilic Gastroenteritis, a very rare stomach disease in which eosinophils (a type of white blood cell), accumulate in the lining of the stomach causing inflammation. This causes abdominal pain, nausea, vomiting, and weight loss. I have been told that even doctors who specialize in the condition only diagnose one person a year.
There currently is no cure and no confirmed treatment - although they have been experimenting with treatments. To add to the mystery, several months in she is not yet responding to any of these, and she is experiencing new aspects that may not be a part of the initial diagnosis. Pain persists and she cannot eat. She has lost a lot of weight and sleeps most of the day. If we go for a walk she is in bed for days after.
This means we've had to take her out of school to do home instruction as we work with her pediatrician, a team of GI specialists, allergists, and pain specialists to try and further diagnose and treat the symptoms.
Friends and family have asked us to create a GoFundMe page as they would like to do something to help and we are ever grateful for that. The funds will go to:
-Hiring tutors so that she doesn't fall behind in school
-Online education support
-The price of non-allergenic nutritional formulas (until she hopefully eats again)
-Any extra bills
-Extra childcare and coverage for time off work as we go to and from the hospital
Elena has already been out of school for two months, and we're working hard to secure all the support she needs to stay on track academically and more importantly to get her healed, comfortable, and eating again.
If you know us, you know that we take on a lot as working artists and parents. You know that we barrel ahead and take on as much as we can possibly balance, because that is what it takes. I'm in the final year of my Masters. Between my husband and I we work up to 20 jobs at a time and we always build space to be completely present for our children. We are proud of that. We rarely ask for help from others, and perhaps that's something we can work on. I can tell you, we are scared for our daughter. We are currently at one of the nations top children's hospitals with the best doctors and today a GI specialist told us that due to the mysteries of the illness our kiddo is their "most challenging patient".
So we humbly open our hearts to you and ask you for help. If you can donate, great. If you want to send her a new book to read, amazing. If you just want to give her a call or send her a note letting her know she matters to you that would make each day easier. Let's get our kid healthy!
The Sancho/Foster Family
It was a year a ago, after several months of misdiagnosed pain, that Elena was hospitalized for the first time after we found her passed out in her room. We have met enough doctors to last a lifetime and went from the fear that Elena would be sick for the rest of her life, to uncovering the trigger and moving into a new safe and loving new home.
I have been afraid to write it, because I have been afraid it would go away; but it looks like Elena has made a full physical recovery. She is back in school, she is eating, and she is not in pain. We absolutely would not have made it through this year without all of your love and support. The notes, the calls, the texts, the books, the care packages, the donations, the tutoring, the visits to the hospital, helping us move, giving Juniper the extra care she needed watching her sister be so ill, all of it changed our lives.
I'm always emotional when one of my children has a birthday because I love them so much. This year is different though, enhanced. This year I feel such a well of gratitude. When I was writing papers at my daughter's hospital bed all night only to tag team with Tony in the morning head into work and do it all again the next night, you all let me know that I could do it. I cannot believe I finished my Masters in a year when we woke up and went to bed in fear. I cannot believe that I get to say she is healthy on her fourteenth birthday.
So this note is simply a thank you that will never be enough. You were there for us when we felt paralyzed. You lifted us up, you made us feel loved, and you pushed us forward.
Thank you. Thank you. A million times thank you. We don't know what we did to deserve all of you, but we will never take you for granted. Please know that everything you did mattered, and that the small gestures of kindness, that can seem almost lost in the haze of our world today, matter. As far as I'm concerned, your kindness saved our daughter's life.
We love you all,
Khanisha, Tony, Elena, and Juniper
Elena was admitted back into the hospital late last night. The doctors believe she will be there throughout the week. She is in a great deal of pain. They attempted an endoscopy, but it appears she is currently digesting too slowly for it to have been completed. Today is also the day we moved into our new home. Tony was in the ER all night and moving all day.
What a day. What a life. Elena is in great spirits and we are surrounded by the most loving friends we could possibly ask for. It is challenging, but we know that each moment brings us closer to an answer. I am keeping the updates coming because of your loving requests, but please don't feel pressure to do anything. You lift us up everyday, and we are already full of gratitude. We just wanted to be sure to keep you up to date with our love, Elena. If you see Juni, give her a bit of extra attention. Little sister needs it too. When we know more, you'll know more.
The Sancho/Foster Family
Elena's pain returned this week, and she has been home from school. Thank you for all you are doing to support our family and her. We are working with doctors. Tony is moving the family into our new home. I'm across the country, which is so hard. I'm doing everything I can from here. Tony is doing everything humanly possible at home. One day at a time.
You have made everyday of this easier, and we thank you.
The Sancho/Foster Family
Lots of people have asked me how Elena's return to school has gone. I wanted to share here. She is two weeks in. The first week she didn't make it all the way through, as was to be expected, it's exhausting and overwhelming to return after almost a year of illness. Week two she made it! She is tired and taking it one day at a time, and wow does it help to have the support of all of you and tutors as she adjusts.
Other updates, due to the suspected cause of the illness and the Landlord's response/non-response/illegal response, we are moving. I am out of town directing, and due to the need to move quickly, Tony is packing our house and moving our family all by himself.
If you'd like to help, feel free to reach out to Tony. The move in date is in just four days, the 15th. I know he is tracking down boxes and looking for ways to move big furniture. He probably wouldn't mind a few extra hands either.
As for us, we are thrilled to see light in Elena's eyes already. They say a body stops growing when it is in trauma, and Elena has suddenly grown several inches in this month of recovery. It's amazing. Fighting the factors that caused it will be a long hard to sustain battle, but we are dedicated to that.
We love you all and would have fallen to pieces without you, but you kept us strong. You have shown us that our community is present. We adore you.
The Sancho/Foster Family
Sending so much love to you and your family! I’m so relieved that this is behind you!
Thank you so much for this wonderful update, Khanisha. Words can't express how relieved and happy I am for you and your family. You're such WONDERFUL people and you deserve nothing but the best.
Hi. I have something similar kinda. I am 22 have 2 kids and have ulcerative colitics. And have been in remission for about 5years. My prays are in thought of you. I was diagnosed since I was ten. Its hard. Buy it does get easier later on. Maybe talk to the doctors bout remestart. It might help but may not. Its a long shot. From my experience from having medical issues since I was young. Listen to what she tells you No one knows the pain like she does. Again sorry I can't not donate at this time but I will keep you in my thoughts and will share.
Sending deep love and well wishes to the whole family. xo
Big hugs to you all. Elena is such a brave kid . Please know that you have a world of people who love your family. Let us know what you need.
Sending you guys so much love, and support.
Keeping you in our thoughts and sending healing vibes.
Keeping everyone in my thoughts. I so wish I were there to lend a hand. Much love to you all.
We want to help!!! We love you Elena, and your strong and precious family!! We will donate to gofundme and as your neighbors, we are here for anything else your family might need! xoxox Sarit, Arnold, Zach and Olivia Swanborn
Great news! Good luck today, Elena. xo
Look into Tenants Union in your area for resources.
Oh, Elena...this is your cousin, Pam. I'm so sorry your having these issues. I pray that they come up with something soon that will help you heal. Even though we don't know each other well, I want you to know that I love you and will be thinking about you and praying for you. Let me know what kind of books you like. I like to read novels; love Stephen King!
Such a beautiful smile!!!! This update is awesome. :D