My middle baby, Tiara Jeanne Goff passed away from complications related to Tuberous Sclerosis at home on January 15, 2015, surrounded by her family. She was 16 years old. We placed her on hospice December 31, 2014 but I made it sound like a positive move to those who follow me on Facebook. I was intentionally downplaying her health crisis to the outside world because I wanted to be entirely focused on her in her final days, weeks or months. I had no idea how long she would last and I didn’t want to be distracted by everyone else worrying about her. Selfish but true.
I knew in November things were getting really bad for her. She hardly walked anymore because it was too much effort. She spent most of her time on the couch and if she needed to get anywhere she crawled. She didn’t want to leave the house except for our daily trip to McDonald’s and some days even that seemed to much effort her. She didn’t like to color and even Hannah Montana was starting to get old. She liked me to lay with her, have me read her books, listen to music or she just slept.
I started on a quest to figure out, what if anything, I was missing. Was she in heart failure, did she have diabetes, was her blood pressure high? Why did she seem so sick? In my heart I knew she was dying and her body had been through so much, it was slowly shutting down, but I had to make sure I didn’t miss something that could save her or buy her more time.
I first took her to the pediatrician for new labs and to check all the basics. Despite her severe obesity her blood sugar was low and she didn’t have high blood pressure, shocking. Next we went to her neurologist, cardiologist, pulmonologist, nephrologist, had an MRI of the kidneys and scheduled a CT of the lungs. She had several tumors in her kidneys which needed to be reduced and after meeting with all the specialists her neurologist (she runs the TSC clinic at UCLA and helps with all organs affected by TSC.) and I were going to decide whether or not we should put Tiara on Afinitor to shrink the kidney tumors. Afinitor is a mild chemotherapy drug which can also help with seizures and behaviors BUT the side effects could be life threatening to Tiara.
I was in the process of getting close to an answer when Tiara came down with a cold. I literally heard one cough and saw a change in her demeanor late one afternoon in December and by 2am that morning she was in full blown respiratory distress. I woke up to hear her wheezing and rushed her to the CHOC ER. Within minutes of being in the ER they had her on bipap, around the clock albuterol, steroids, antibiotics and IV fluids. Her doctor was amazing and extremely aggressive in treating her pneumonia which I believe saved her from being intubated and put on a ventilator once again.
We were up in the ICU within 2 hours, a new record. Upon arriving in the ICU we were greeted by a few of the attending physicians who had been taking care of her for the past few years. As I spoke to one doctor I described how worried I had been about Tiara and her declining health. I told him what I felt in my heart, that she was dying. He looked at me and said: “I have never heard you talk like this. We know you here and want to support you both the best that we can. Maybe we should talk about not intubating her if she needs it this time?” I shook my head no, as tears formed in my eyes. I told him I wasn’t ready to let her go yet. He was so kind and understanding but after he left I really thought about what he said. Obviously I wasn’t crazy in my thinking she was fading away or he wouldn’t have said that to me?
I called Louie and told him what the doctor said. He cried and said he wasn’t ready either. She didn’t end up needing to be intubated but after a week she was more than ready to go home. Upon our departure, I had another conversation with another of her doctors who said to me: “We may need to have a conversation soon.” I knew what he meant, he saw it to.
She went home on oxygen and it never came off again. I took her to McDonald’s twice but each time I had to put her in the wheelchair to get her to the car along with her portable oxygen. She didn’t want to go most days. I warned our family that it would probably be Tiara’s last Christmas and to make the most of their time with her. I also called my best friend who is a photographer and asked her to come and take our family portrait before it was too late. She did and I will be forever grateful for the shots she captured of Tiara and our entire family.
We had a very special Christmas which will be remembered as the best Christmas in my life. It was magical and I knew God was giving us this gift which scared me even more. It meant Tiara really wasn’t going to be around much longer.
Two days after Christmas I had to bring her back to the hospital. I knew she was sick again but this time she didn’t get the same care in the Emergency Room. She wasn’t wheezing and even though I knew she had another pneumonia the ER doc took 5 hours to come to this conclusion. After deciding we should spend the night she tried to send us to the floor. I begged her to call the ICU and ask them if Tiara could go to the 6th floor. Of course once they heard she was back in the hospital, they accepted her into the ICU, her home away from home. I knew Tiara’s pneumonia was bacterial this time not viral. It was clear she wasn’t swallowing correctly anymore and she was constantly choking and storing food.
During rounds the first day I asked her doctor what he thought about hospice. I had been researching it ever since she had been discharged in the beginning of December. He looked at me, thought for a moment and then said, “I think it’s probably time. We can’t do anything medically to get her better. She is going to be in here every week at this point but she is a fighter and this could go on for a long time.” He then graciously offered to let us stay in the ICU until hospice was arranged and we could go home. We went home New Year’s Eve.
I didn’t really have any idea how long she would last since she still showed moments of her feisty self several times each day.
The hospice team came to meet with us and decided she only needed to see the nurse once a week at this point. Louie and I decided to cancel all the caretakers since she hated when I left her with them and really what errands did I have to do which were so important at this point? NONE! He shortened his schedule at work to help me take care of her and friends started bringing food for dinner. My mother in law showed up everyday instead of every other day to help me and other family members would show up each day to visit and help. She no longer liked visitors, loud talking or laughing like she had before. It was clear her brain was failing like a dementia patient and she was so anxious she couldn’t stand too much activity going on around her.
One week before she passed Lou came home from work and I told him I needed to take a walk. I hadn’t been outside in 2 days and it was really starting to get to me. She heard me tell him I was going for a walk and the second I walked out the door she started asking him to go on the trampoline. “Jump, Jump, Jump!” He convinced her to wait until I got home because he knew I would freak out if he took her on the trampoline since she could barely walk. When I got home she started asking again. She was very adamant she go outside to jump.
I knew she needed to jump one last time so I said, “Let’s do it.” Trin walked out first, Lou helped support her while she walked outside and I followed with the oxygen tank. We made a pit stop at the swing and while she was catching her breath we tried to convince her swinging was enough activity. She wouldn’t hear it. She pulled herself up and headed for the trampoline. Trinity got in first, Tt followed with Lou pushing her up and then me. She instantly started jumping and all 4 of us held hands as she slowly went up and down. I was praying the trampoline wouldn’t break since we were doubling the weight limitations but once again God provided. She finished her jumping and we got a smiley, glowing girl safely back inside the house.
A few days later, I called for the priest to give her the Anointing of the sick. It was Sunday, January 11, and she was talking so much and moving around he seemed very confused as to why I had called him. She didn’t seem sick enough for him to be performing the sacrament. I assured him she was really that sick but he seemed skeptical. Nevertheless he performed the ceremony while Tiara kept interrupting him to ask for her show. Oh, TT!
The next morning I knew something had changed. I called my family and told them they needed to start coming over everyday. On Tuesday morning when my brother in law visited it was clear to him she was in the final stages of dying. He returned later with my sister and their kids and from that moment on the entire family arrived and we sat vigil for Tiara. There was between 13 and 18 of us at all times except when everyone else went home to sleep.
Tiara ate her last meal of humus and crackers on Tuesday, January 13 at 2:30 in afternoon. She could barely swallow and couldn’t walk at all. She kept falling on her elbows when she tried to crawl and I was getting really scared. The hospice nurse came over and we decided for Tiara’s safety we needed to start sedating her. Hospice usually likes to keep the patient awake as much as possible but because Tiara refused to stay put or stop eating and yet couldn’t actually get around safely, it was time. We tried giving her ativan but it didn’t work well enough. We then tried phenobarbital which started to work on calming her. We gave her a double dose at 7pm that night and she shouldn’t have woken up again but by some miracle she did.
She woke up while laying in the king size bed she shared with me and was surrounded by her family. She reached her hand to the headboard and started knocking. That was the game she played with Louie everyday. She would knock and he would pretend someone was at the door and he would go answer it. She always thought she was tricking him. She played that game with the whole family for a few minutes and then we started singing Happy Birthday and pretending we were at her party. She absolutely loved it. After about 10 minutes she started to get upset and I knew she’d had enough. I kicked everyone out so I could give her another dose of medication rectally and that was the last time we heard her voice.
On Wednesday we all took turns laying by her head, her feet and holding every part of her body as we prayed for her to pass. She was no longer wearing her oxygen and she was struggling to breathe. I kept suctioning her to try and help with the secretions but her body was shutting down. At some point on Wednesday early evening her soul left her body. I don’t know the exact moment but I just know that when Tabitha and I slept with her that night, we couldn’t feel her. It wasn’t like it had been the prior nights when I slept next to her, clinging to every ounce of her being. As we watched her struggle to breathe I sent a text to my family in the morning telling them, “her soul is already gone but her body has not finished the process yet.” I hit send, I looked over at her and she took her last breath at 8:18am. She was gone.
I called the hospice nurse and let her know and she showed up a half an hour later with an amazing art project for us. She brought a canvas and some paints. We all gathered around Tiara’s bed and took her hand print, the one in blue, centered in the middle. We then each layered our own print over and around hers in a different color. Mine was fushia, Louie/green, Tabitha/orange, Trinity/aqua, Grandma Cindy/ lavender, Grandpa Jack/ blue, Nana/black, Auntie Heathie/ gold, Uncle Chris/ yellow, Cousin Indy/ pink, Cousin Izzy/ navy and her favorite Cousin Harry/ red.
We celebrated a mass for her at our Church on Wednesday, January 21, 2015 and the church was full. I think nearly 400 people showed up to support Tiara and our family. It was truly incredible. I gave the eulogy which was my final gift to her and then we buried her in the coolest turquoise casket you have ever seen at Pacific View Memorial Park in Corona del Mar. Louie and I already bought the space next to her grave so we will be buried with her when it is our time to see her again in heaven.
Rest in peace beautiful girl. I know you are in a better place.
xoxo tiffani
Tiffani, I have not stopped thinking about you or your family since I saw your status come up on Facebook the day Tiara passed away and me heart truly ached for you all. I know it sounds crazy, but ever since I started reading your blog, I felt like I knew you all and was so hopeful that Tiara would be around many years to come even though I am not naive in knowing how sick she was, but still I had my hope and faith. I do believe (as I am Catholic) that she indeed in a better place and not suffering, but still my heart does feel terrible for your loss of her. Thank you so much for sharing Tiara and your family here with us and am hoping that you will continue to blog even though she is no longer with us as I do love getting updates from you here. Thinking of you still and sending some hugs from NY to you.
TIFFINY.
Your story is powerful. Embracing death is difficult. Your family embraced death with purpose , meaning, grace and acceptance. The process of death can be so enlightening. The joy in Tiara’s eyes in the pictures are evident how much she felt loved and respected as a person. I can not imagine what it is like to lose a child, but I am sending you prayers , peace and comfort. In writing and sharing your story with others, you have given others a true gift. During the past two years you have been inspirational. You wrote about your vulnerability, frustration, and meaningful events. I am sorry I never got a chance to know Tiara, but I feel like she will hold a space in my heart always. Your daughters video on You Tube was so amazing and it shows how much strength and love you have in your family.
Thank You Tiffany
My love to Lou
Thanks Janine! I have missed my blogging world and I am pretty sure I will now continue blogging in some fashion. I realized yesterday as I wrote that post, I really miss writing. xoxo
tears were streaming as i read this. I am so glad that all of you had your TT for the time you did. Her casket was very cool. Turquoise is my favorite color. when i think of you Tiffani, i will always think of what a wonderful mother you are. TT will be waiting to see you all again. Much Love. Lisa
I’ve been keeping up with your blog for a while & have read all of Tiara’s story. I am so very sorry for your loss, but you were the best mother Tiara could have ever hoped for. I’m sure taking care of her was no easy task & you went above & beyond to do every little thing to make her happy. Because of you she experienced so much love and happiness during her life. You couldn’t have done a better job caring for her & I’m sure she is in a better place now looking down on you & is so appreciative for all that you did for her & I am sure you will be reunited with her one day again and she can tell you just how thankful she is. You and Tiara are both beautiful people & neither one of you deserve to be in pain or suffer. God bless you & your family.
From the bottom of my heart I am truly sorry for what Tiara and your family had to suffer. When the doctor gave us the diagnosis of TSC at 10 mos of age, (he is now 7), I didn’t think of what could be ahead of us as he ages. This disease is so evil and ever changing, it’s a life of uncertainty and ups and downs and just trying to soak up every bit of joy these special, beautiful little people bring. I don’t know you but as a mom of a little boy with this disease, I wish I could take away every ounce of your pain. You are truly in my thoughts and in my prayers. God bless your beautiful fighter and your family. Thank you for giving those of us who sometimes feel alone in helping our children fight, a look inside your fight and understanding that we are not. Thank you for letting us get a chance to know who Tiara was. May this precious little girl rest in peace and fly with the Angels, as I am sure that she already is.
Tiffani, I cannot imagine the heartache and sorrow that envelops you now. I have followed your blog for a long time. My daughter, Taylor, age 22, also has TS. She looks so very similar to your Tiara and many of your trials and tribulations have mirrored my own. I’ve always lurked in the background – never commenting. Yet, I’ve never felt connected to a total stranger as I feel connected to you. Kinda weird – yet also amazing. I saw this blog and cried when I read this. I will miss hearing about Tiara and of the wonderful, awesome, relationship you two had. You are an incredibly kind and generous woman and I wish I could hug you. Take care lovely lady!!
Oh my, my heart is breaking for you and your family. TT was blessed to have had such a wonderful and adoring family. Sending prayers for comfort peace as you morn for your beautiful daughter.
Terri, grandmother to 11 year old Abby who also has TSC
I am so so sorry to read this.
Yes, tears running down my face while reading this, your family is amazing, and have been very strong thru this whole process, God bless you all, as this year begins with another beautiful angel in heaven looking over you!
I am so sorry for your loss…my heart aches for what you must be going through. I have enjoyed following your blog for quite some time, and I have missed your updates…your strength and love and caring for your daughter is so inspiring to me. You never gave up, even when it was taking a toll on you physically. I appreciate you sharing your family’s story with us…may you and Lou, and the girls keep your heads held high and bask in the love and praise you all so deserve.
Beautiful Tiff, thanks for sharing. I’m not sure if I mentioned this, but the sermon spoke to me on a very personal level….TT and God had a very important message to give that day. I will cherish it always. Sending prayers for PEACE to you and your family everyday! xoxo Les
Bless your heart dear Tiffany. You, and your family are truly jewels! It was an honor to read this beautiful piece!
Oh Tiffani! I have no words only tears. I am so sorry for the loss of your beautiful, precious Tiara. She had the best life with a wonderful family who loved her to the moon and back. I am certain she is happy and healthy now and is jumping on the clouds in heaven with our Lord!
Sending Love to you and your family. You were our first TS contact as we attended the picnic in Irvine 2013, one month after Keenan Creamer’s diag. (Mom/Katie Creamer). We met your sweet Tiara that day. Blessings upon you as you mourn and cry and remember and laugh and bring us along with your words and above all your Love-by-example. I am a better person for having read your inner heart story of goodbye. Lifting you in prayer. Keenan’s Oma, Nina McMullen
I am so very sorry for your loss. May she rest in sweet heavenly peace. Keeping your family in my prayers.
Hugs and more hugs. Such an incredibly difficult — unimaginable — time, but your writing depicted such a depth of wisdom, faith and love. So beautiful. I love the pic of Trinity and TT. With their smiles — I can so see you and their resemblance. A friend who works with hospice told me of the struggled breathing at the end (I remember deciding not to incubate my father) to think of it as a kind of labor. A labor into a new birth. Tears come when I think of you reunited with the glorious heavenly TT. The sadness for you is the early loss and separation. But I believe now for her time is not as our time. It will be just be moment to her. xoxo
I did want to make clear the earlier comment about not incubating my father. We had the oxygen tube inserted many, many times during his month long stay at the hospital. At the end, when he was failing so — we decided it was time to let him go.
This had me crying. I’ve been following your journey for a long time and this moved me. I will be praying for you all.
What a beautiful tribute, Tiffani. Tiara was so blessed to have you as her mother and your whole family. I have followed your story ever since I met you and I have shared your ups and downs with you. What a heartbreaking and courageous journey you have had, and you have lived every moment of it with grace, compassion and unconditional love. You are truly an inspiration to all of us. Our prayers and love are with you always.
God bless all of you and your sweet girl Tiara. I’ve ready your blog and Tiara was blessed to have such a wonderful Mommy and Daddy and loving family. Tiara will forever live in your soul and is now in heaven, happy and healthy until you meet again. Pacific View is a Beautiful cemetery, my fathers buried there. Your family will remain in my thoughts and prayers.
Kristin Soto-HInson
tiffani.. We too used hospice and it was such a tremendous help and comfort … We went thru a lot of e same only it was Stacias last kidney that was failing .. It was a spiritual experience … My heart goes out to you and yours as I know how very hard it is to let go but also how peaceful it is to know she no longer suffers and is in a better place .. I hope they are together laughing and happy!
God bless you and your family .. Someday maybe TSC will no longer take our children !
Love and prayers
Susan
Thank you Tiffani for sharing those last days and moments with Tiara. Keep writing because you touch so many hearts with your words…..keeping you in my prayers.
My heart breaks for you and your loss. I am so sorry.
So beautifully written! I’m in tears too. My heart goes out to you and your family. Sending love and prayers your way.
Tiffani,
I have followed TT’s story for some time now, and have found inspiration in how strong and loving a mother you are. My heart breaks for your family.
Lou, Tiff, Tabitha and Trinity,
Our family has such happy memories of TT all the way back to Purple Flower Power. We are thankful we were able to share her beautiful spirit in our lives. Our thoughts are with you and we are sending love your way.
Love, John, Sunday, Haley, Lexi Lulu and John John
My heart jumped when I saw the title of this post. I’ve been reading your blog for about 2 years now and I know you’ve been absent a lot lately because of Tiara’s health. It’s strange when you’ve never met a person but you feel like you’re a part of their life because you take a glimpse into their world everyday. You and your family have been in my thoughts and prayers for the past 2 years; seriously, sometimes I think I’m nuts because I’ll be doing a mundane daily task and y’all pop into my head and I wonder how you are. Words can’t express how much my heart breaks for you right now. As I was just swaying and shushing my 5 month old baby boy to sleep while reading your post, I couldn’t help but hold him a little tighter, kiss him 10 more times and say another little prayer of thanks to God for him. Thank you for what an inspiration you are…as a person, as a wife, as a homemaker, and as an amazing mother. Everytime I’d read a post, I would think, “how in the world does she have so much patience?!” I pray A LOT for patience lately being a first time mom and reading your post tonight has put life back into perspective–about being positive, having patience and keeping the faith. I know that no words can really comfort you–I’m sure you’ve heard it all…that Tiara is no longer suffering and is in a better place, that you will see her again someday, that you did all you could for her. While all of these statements are true, I know all you want to do is hug her and hear her voice just one more time, so all I can say is that someone you’ve never seen or met across the country is praying for you. Praying that God wraps His loving, comforting arms around you in a big bear hug and that in the coming days, weeks, months and years, your burden gets a little lighter. Tiara may have only been 16 but she leaves behind a legacy of great strength and you have yourself (and Lou) and God to thank for creating such an amazing human being and being the best mom you could possibly be. God bless you and your family–I hope you continue to post and for goodness sake, finally write that book now! :))
Dear Tiffani, Your blog has touched my heart since I first started reading it. Please accept my condolences on the loss of your beautiful daughter Tiara. Judy
Dear Tiffani and Family – I just heard about Tiara. I am so incredibly sorry for your loss. Your family is in my thoughts and prayers. You are one of the strongest women I know Tiffani. May God give you and your family strength during this time of loss. Tiara will forever be remembered. Sending you all much love. Great big hugs to you all, Beth
I am so sorry to hear about your loss, Tiffani. Praying for God’s peace and comfort to surround you.