Death Survey (120-04)



Elizabeth and Caroline DeLuca

Houston, Texas (Survey Date: July 2003)

Preface: This story did not come from an interview, and is not given in first person, as with the others. It came in the form of an email. So it is left in that form whenever possible, including associated comments by others. It is edited only for presentation here, not for content. As these people have opened up their lives so that others may benefit, please be respectful of their names and personal information.



A forward...

This is a long story, but I thought you might be interested to read how a cancer drug is helping to reverse, at least in part, lifelong damage to my sister Nancy's granddaughter, Caroline. She doesn't have cancer, by the way. The message comes from Caroline's mother, Elizabeth DeLuca, who has never stopped pushing for an answer to Caroline's problems in all of her 5-6 years of life. It seemed like they had tried every possible avenue, innovative therapy, whatever. And now, this!!

Caroline is going to be featured on "Good Morning America" on Thursday morning [July 10, 2003]. It comes on ABC at 7:00 am, in case you'd like to watch it while you're getting ready for work. I will be!

Jeanie



A forward by Nancy Taylor.

Latest news on my 5-1/2 yr old granddaughter!!!!

----- Original Message -----

From: Elizabeth DeLuca
To: Nancy Taylor
Sent: Tuesday, April 22, 2003 8:46 PM
Subject: Fw: What a month!!!! Yeah!!!

I have to start this email by saying that we had a terrible winter with poor Caroline. I have never seen someone go down so low so fast. By November she could not crawl and had lost the use of both hands. In total despair Anthony and I took her to Texas Children's Hospital and saw three neurologists in one week. We needed answers and we needed help. They had little to offer and we were resigned to losing Caroline. We talked about a DNR do not resuscitate order and filled out a directive to physicians order so that she would not be exposed to any painful treatments in the future. We even bought a plot at Glenwood Cemetery for the three of us. The one neurologist who has been with us from the beginning said that there were a couple of tests we could do, but that we basically had done them all. We did the initial blood tests he knew of, but the final test was a spinal tap and that went against our decision against painful treatment for her.

Anthony finally said we had to do it. The other neurologist pressured us to do it as well, because it would completely finish all available testing. In February we did the test and Caroline did so well, not a tear.

She now was completely mute and was scarily silent. In mid March I was shopping with Caroline in the middle of Ross Dress for Less (no less) when my cell phone rang. It was Dr. Miller, our primary neurologist. He said, "Mrs. DeLuca I have found something." I calmly said, "Slightly something, mildly something." I said this because that is all they every find, some tiny insignificant nothing that means nothing.

No, this is a significant finding, he answered. Enough of the quotes. Anyway I flipped out in the middle of Ross Dress for Less. Talking to him and telling Caroline at the same time, alarming all the shoppers who thought I was pitiful for talking to what looked like a completely out of it handicapped kid. I then asked if there was any treatment for her and he said yes!!!!! We started the new medicine the next day. It is a colon cancer drug called Leukovorin, and it is to help her get folic acid into her brain. Oh, that is the problem. No folic acid in the cerebral spinal fluid, apparently Caroline does not have enough binding protein to attach to the folic acid in her blood and take it to the brain. You need this folic acid because it helps the cells replicate and communicate etc. Kinda important.

To make this very long story a little shorter, I hope. We started the meds and a week later we noticed a little grin we had not seen in a while, then a few days later a little mischievous giggle. Then balance returned and she stood alone for the first time ever. Then cruising furniture, then walking. Fast walking. She is even using her hands. The paralyzed hand is coming back slowly, but there is some major improvement. Needless to say, every day is like Christmas at the DeLuca house right now.

People see us walking down the street. We are up to 3 city blocks. and they stop their cars and say WOW! People at the little league field started crying. I'm not kidding. Our regular waitress at Avalon had to sit down when Caroline walked in the first time. I could go on and on with stories of total strangers stopping me and saying, "Hey isn't that the little girl in the purple wheelchair?" Yes, and then I give the biggest @$$^$#% eatin grin you ever saw. If you thought I was crazy before you should see me now.

We had a three hour doctor appointment last thurs. and I read a report from Europe about 5 children who deteriorated to the point that they could not sit or hold up their heads, two had gone blind, and their MRI's had moderate cerebellar atrophy, they had seizures all the time. A wonderful doctor by the name of Dr. Ramaekers put together their symptoms lumped them together and did a spinal tap. They had Low 5- methyltetrahydrofolate. He published his report in Sept. of 2002, our doctor read it and it sounded like a little girl he knew. A very special girl named, Caroline. Little did we know what a rare disorder it was.

Anyway I waited to shout the good news, I was so afraid if I talked about it it would go away. I can't keep the secret anymore because Caroline is out and about. There is little research in this disorder as of yet but it looks like the motor situation gets better and the mental retardation gets a little better. Quality of life goes through the roof. My dream is that through Caroline somehow they find the gene for this and that they can test babies that exhibit symptoms and then the treatment starts before the mental retardation and brain damage sets in. Needless to say I have already emailed Switzerland to Dr. Ramaekers (hope he reads english) and offerred him our blood samples if he needs them. I also sent him the picture of Caroline that I am sending to you. A picture of her standing alone in the garden for the first time ever. I thanked him for giving me back my Caroline. If you know anybody who does not believe in miracles, does not believe that God is so wonderful that our prayers are heard and that he answers them in his own way in his own time you have my permission to pass this email on or to tell my story.

CarolineDeLuca.jpg

Good night,

Elizabeth and Caroline




(an update)

I couldn't find any of the interim updates, but got this today. Beth said a few weeks ago that Caroline is signing for food (unheard of), and I saw her reach up and take Beth's hand - an act of will I have never witnessed from her. It's truly amazing, and wonderful.

Jeanie

Ok, to all my friends and family and those who have been added on to my friends and family by my friends and family. Thursday morning is the morning that Caroline DeLuca of medical fame will be featured on Good Morning America. For those that do not know, Caroline is back and better than ever. She is walking, eating (after an 18 month hiatus), almost feeding tube free. She said Hi yesterday to me and has even answered uh huh to me in the last two days. She has regained use of the two paralyzed hands and she is drinking from her sippee cup all by herself. If you want more info. tune in to Good Morning America on Thursday July 10'th. If the day changes they will email me Wed. afternoon and I will let you know. If you are not interested I am sorry for this email and you may delete me now. 3 2 1 Delete.

Sincerely, Elizabeth DeLuca Mother of Caroline
(my signature from my desperate internet days trying to find her disorder)

PS if you know someone who knows Caroline and I have accidentally forgotten them please pass this on. If you know someone who prayed for us please pass this on.




(another update)

Honoring her daughter, The Caroline School was founded in 2002 by Elizabeth DeLuca at The Center Serving Persons with Mental Retardation. Elizabeth DeLuca is an officer on The Center Board of Trustees.





(2016 update)

A few weeks ago, I was saddened to learn of Caroline’s death in March 2016, at age 18. I had stumbled on her online obituary after doing a search, after not having any word on her progress (or decline) in quite some time. Upon learning of Caroline’s death, I asked Jeanie Woodruff to pass along condolences. Below is Jeanie’s partial email in return.


From: Woodruff,Jeanie
Sent: Wednesday, September 28, 2016 3:05 PM
Subject: RE: Elizabeth and Caroline DeLuca

[...] It has been super hard for them, especially for Elizabeth, whose entire life was wrapped around Caroline’s daily care and schedule. She misses her buddy something awful.

Last fall, I guess, Caroline started sleeping for longer and longer periods of time. I remember going to visit her on her birthday (November) and we had to time our arrival to coincide with when she’d be awake – at that time, from about 1:00 – 3:00 in the afternoon, and then maybe 6:00 – 9:00 in the evening. Over the next months, the awake time shrank until she was sleeping all day, and then for a couple of days, and then for maybe 5 days. She’d wake up for an hour or so, and then that was it for that round. They’d use that hour to get her a real bath (instead of a sleeping sponge bath), wash hair, cuddle, sing, read to her, whatever. Beth was tied to her cell phone so that, if she happened to be out and about, she could rush home if Caroline woke up. Basically, she ran out of gas…the mitochondrial disease part of her various syndromes left her with less and less energy to live on. It was tough to watch.

Here is part of a post from Caroline’s CaringBridge page, about a month before she passed away. I think you will find it interesting [my comments in brackets].

Jeanie

––––

A couple of weeks ago I was watching the camera that is on in her room. On infrared I saw what looked like a small glowing ball in her room flying around her bed. I thought it was something on my glasses, it wasn't. So I went into the room to see if I could see what was causing the reflection. Nothing. So I went back out to the iPad to see the camera image, there they were two balls over the bed, flying. I said nothing, because it was odd and what could I say.

Then last night Anthony [Caroline’s dad] was watching the iPad and came in her room, looked around the dark room and went out. Today he asked if there were large white moths flying in Caroline's room as he could see them on the infrared image. Two of them flying around the bed.

Then tonight, I asked Doris [one of Caroline’s caregivers] if she saw anything unusual on the iPad image. She said, "Don’t think I am crazy but I saw two bright tiny lights over her bed. Flying. So I looked in the room, nothing, but on the iPad image I see them.” Thinking the iPad was broken, she watched Caroline. Her eyes were open and she was turning her head and tracking the white lights over her bed. Her eyes following them. So Doris went back in and could see nothing. Caroline was looking at a blank ceiling. Until you looked at the infrared image and could see what her eyes were tracking. Two bright tiny orbs.

We asked Lupita [her other caregiver] and she saw them today too.

. . . .

Apparently over the past several days her breathing is changing – Beth described it as “off.” I take that to mean irregular, with some stopping for brief moments. She writes:

Last night I slept with her and her breathing was off. She even stopped once or twice for a bit and this time I wasn't scared at all. I did go and wake up Anthony and we all got in Caroline's bed together. Luckily she has a queen sized bed. I was snuggled up against her and he was snuggled up to me. We stayed that way and just waited. She then got back to a more normal pattern and eventually around 5 I fell asleep.

It is tiring but I am proud of us. We are a great team. Caroline is very aware that we are there. She is not waking up but sleeping so peacefully. She slept from Sunday thru this afternoon. That is a lot of sleeping.

The Hospice nurse suggested we have music therapy. Not wake her up, just have Marianna come and play Caroline's favorite songs quietly on the guitar. Caroline didn't wake up during it but she definitely was listening. She squeezed my hand when a favorite song was played. When Ten Thousand Reasons played she squeezed my hand over and over.

Caroline is an amazing young woman. She is braver than you could imagine, her faith is strong. She is ready to go to heaven and be free of her worldly body that is holding her hostage at this point. She must have a bit more to do as she is still here with us.

I remind her every time she is awake. "Caroline, if Taylor [Caroline’s best friend, also special needs, who died last year] comes to get you, or Alexis [her teacher who recently died], go with them. There will be no wheelchairs or feeding tubes, no seizures either."


She knows what to expect.



[And these couple of posts from right before and after:]

Journal entry by elizabeth deluca — 3/21/2016

Well, this post it gonna suck a bit, so read it at your own risk. I am serious. Things are not going well at the moment, yet they are. Here is how.

So Caroline is not doing too well, she is really not doing well, yet, today she woke up and I was able to give her a shower. A real shower, not in the bed bath. So, in our big picture she is not well, but in the microcosm of the day, she had a great moment, she was clean, in her bed, with her mom, Dad and big sister being snuggled. Allie flew into Houston and arrived last night. Nothing concerning Caroline discussed, Allie had only had an hour or two of sleep and was jet lagged. We had a nice time and she fell asleep. This morning Anthony had to go to the farm to meet someone and so Allie went along to release our baby guineas to the flock.

While they were at the farm or along the route at some point Anthony was able to get Allie up to speed on all things Caroline. It was not a fun conversation but it was real, it was honest and it was necessary. We are a family that does not keep secrets or protect our children from things that are real, particularly if we are asked.

All questions are honored and answered to the best of our ability and if we can't answer, which happens a lot with very bright kids, we will find the answer together. All of us learning along the way. So Allie arrived back at the house and found her way to Caroline's bed. I allowed them some time and then stepped in to remind Allison that we can't get Caroline too upset. We wound up, in typical Caroline fashion, listening to some great music and singing along. Caroline was really trying to sit up, wasn't able to, so we adjusted the bed into an uprightish position, we talked and had a pretty good time considering.

We then made the decision to get her into the shower. Quite an undertaking. It took Lupita, Allison and myself to get Caroline from the bed to the wheelchair and then to the shower chair. We did it. God love the giant 6 x 3 foot underpad on her bed. We literally grabbed two corners each and used the underpad as a giant sling to lift her. Allie had her head, we gave her the most important part. into the wheelchair we went, fully reclined and into the shower, do it all in reverse and we were in the shower chair. Caroline loved the warm water, the soap and yes, Virginia, we stole your xmas gift from Grandpa out of your bathroom, your wonderful SLEEP soap full of lavender and vanilla goodness. Sorry, I ran out.... Anyway, we got her so clean. Made my heart so happy.

Then back to her bed that Allie had stripped down and remade. Then in came Dr. Glass to check on Caroline. She visited and also cracked jokes with Anthony on Trump winning the popular vote and caroline really got a smile out of the joke. She just grinned and grinned. I am definitely taking that 18 yr old out to vote. In clean pj's and with her smelling so good, she fell sound asleep. I am tired out but thrilled I was able to be close to my love, my Caroline. We are praying for peace here. Virginia will be home on Friday and we will all be together to be with our Teddy. Our Caroline.

Hospice is good to us, patient with us, we are getting the gist of it finally. The seizures that plague us are still here, even as we are finishing this, they give us no peace. I am angry about that. They are the things that have brought us to this place, a place no family wants to be. I hate seizures with every fiber of my being. Every fiber. Today I was happy, strange I suppose to those of you who hopefully have never been where I am, I was happy because Caroline is happy, she is happy and calm. That is huge.

Her heart is happy, she is comfortable with what is happening here. I told her on Friday, which was a terrible horrible no good very bad night, I told her that she was a lucky lucky girl. She was going to heaven, and that there are no seizures in heaven, it is not allowed. No seizures, no wheelchairs, no feeding tubes or feeding pumps allowed in heaven, it's a rule. I am sure of it. So here we are. Finally here. Weeks away or something. A couple anyway. STXBP1, you suck. You totally suck. We hate you. We hate you. Sorry I guess anger just jumped into my grief for a minute. Daytime i feel as normal as one could expect at a time like this, nightime is horrible. HORRIBLE. I stay awake and the worry and sadness creep in. Spider solitaire is super good for that and I have increased my high score many times today. If you see me and I am staring at my phone, my anxiety is probably high and I am on my spider solitaire app.

Church today was so so amazing. I cried my way through it quietly. Held at times in the comfortable arms of my friend Eileen. Got to love a friend who doesn't freak when you quietly have tears pouring down your face, she just puts an arm around your shoulders and leans in. Oh, and puts a toddler in your lap, that helps too. After communion I went up for prayer from my favorite prayer team. We just prayed. Eileen came too. Great prayer. I cried some more. That's ok, I deserve to cry.

It is really going to be ok, one day i think. It really is. I have great girls, great husband, great family, great friends, super great church.... I am going to try as hard as I can, after all this, to be happy and enjoy things. To be with my kids, enjoy my husband, really try to be happy. I have seen it go two different ways, losing a child, see I have tons of friends who have lost their children. I can sit and stew and grieve and never ever come back from that. OR I can try and try to be happy, to have and enjoy a life left to me. Which will make Caroline happy too. I don't want her to watch me down here, sad and unhappy and miserable, thinking, I did that to my mommy. I want her to watch me doing stuff and being happy. That will make her happy.

Long post, sorry my mind is going round and round. People who read this. Forget the petty BS, go out and have some fun... enjoy your kids they are probably pretty amazing people. off to my bed,

E and Super C



Journal entry by elizabeth deluca — 3/26/2016

I have no idea what information some of you have gotten and I have dreaded this post since I began the blog years ago. In fact I began her blog for her to be able to read about her life, how hard she worked and how amazing she was. On Wed night we had a very very hard night. Caroline ran high fever and had breathing issues. She was exhausted. I was up all night with her. She was awake a bit but mostly slept and pretty comfortably.

Sometime in the night we had a transition. She went into a coma I believe. Or a deeper level of sleep. I was holding her and I woke up Anthony to have him come in. I called hospice during the night and again in the morning. Our usual nurse came in the morning and she assessed Caroline. Saying we had perhaps just under a week left. I was worried and felt we had less. Sadly, I was right.

Caroline passed away in my arms at around 11:45 am. Just the two of us. I walked her thru it as she began to stop breathing. Asking her to look for her Grandaddy and her Pappaw. To look for Taylor or Alexis. To use her legs and her voice.... to sing. I was calmer than I ever thought I could be. I loved her through it... holding her in my arms. I told her I would live in a spirit of joy and happiness to honor her. She was gone.

I then called Anthony to come home, called Allie down from her room, called Lauren at her house to come over. Called Virginia to fly home from college. Called Hospice to come pronounce her. Then we all got in bed with her and held her. We sang songs she loved. We kissed and kissed her. My precious, precious gift from God.

Then the girls went out and we bathed her and dressed her in pj's lovingly ironed by her grandmother [Nancy]. To say I am grieving is an understatement. I have not much more to say as I am overwhelmed with the post. The outpouring of love is beyond comprehension. The mail, email, texts, posts, all the messages have lifted me up. I can't read many at one time. I am overwhelmed and exhausted.

Thank you for loving her and following this blog.

CarolineDeLuca18.jpg



. . . .



I personally never met never met Caroline, Elizabth or Anthony DeLuca. I only know of this story through relatives that were kind enough to relay the above information to me. Thank you for that. I felt then (and still do) that this story should be told, as it is an amazing tribute to a family's plight and fight.


Here is a link the Caroline DeLuca's obituary, from the Houston Chronicle.

Find Elizabeth DeLuca's blog at the CaringBridge.org. You will need to sign up.

A 2015 Channel 2 news story regarding Elizabeth's fight.




"No man stands so tall, as when he stoops to help a child." -- A. Lincoln


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