To Date: Posts from Meal Train
We are establishing this blog so you - Taline's family and friends - can use the comment section to reply to Taline's posts and share why and how Sergio has encouraged you.
For context, I copied over posts written by Taline and published on the Meal Train site (which doesn't allow for people to comment on her posts). You can keep using Meal Train for opportunities to help with meals, etc and these posts will be available there as well.
To make a donation to the family: https://www.youcaring.com/sergio-perez-669404
To sign up to meet practical needs: https://www.mealtrain.com/trains/2gk7l8/journal/
Pray For Sergio
Posted 12/19/2016 by Taline
Dear Family,
Tonight we spent the afternoon with Sergio and our sister in law. Had a great time and then got ready to leave. Sergio fell apart. As I would say, he cried a good cry. He was trying to pack again and get out of his wheelchair in order to pack. So, staff had to come in because he is too comfortable with me. He wheeled himself after us in the hall saying, "Our House." It was so difficult to leave him behind. The girls were crying and feeling bad for leaving him there. We're almost there...I was not able to go this morning because the girls sang in a Christmas program and so I videotaped it for him to see. Although he loved it and proudly hugged them for it, he had been alone during the morning. Not to say that this is the only thing going on.
Please pray for him, for all the emotions he is processing, his frustration with not being able to communicate, and patience until he comes home.
Thank you for visiting him.
Love,
Taline
Freedom
Posted 12/14/2016 by Taline
It has been a difficult few weeks in all ways. And my best friend is ill and dying from brain cancer. Our lives have completely changed and some people can live in that and support us and some can’t. I thought it would get easier to write, but I find it more and more difficult. Maybe that’s why Sergio asked me to promise him something four days after his surgery and one day before the strokes. I found it odd but agreed light heartedly since he rarely asks for my word for anything. He told me, “I know you are a private person, but I want you tell everyone everything. No secrets. Just say it like it is. You’re going to need all the help and support you can get.” as he sat in the brown recliner looking straight ahead to the wall. Maybe he knew that the only reason I would continue to be open is to honor my word.
I feel like the little statuette of the man under the columns in the bank in “Despicable Me”. Just the weight of it all. I am forced to learn a lot about insurances, all kinds. The big question has been, “Who pays for home care?” It’s been hard for people to believe that the family has to pay for this. There’s a subtle inference that maybe I’m not talking to the right person, or haven’t been given the correct information. But medical insurance does not cover this. You have to buy long term disability insurance, have the funds, or make sure your family is willing and/or able to help, and preferably someone with some type of medical background depending on the needs. The case manager told me people have a hard time understanding this because they think it must be covered by some government agency somewhere. In fact it is such an area of need, because the cost is so high ($10,00-$12,000 a month for 24 hour care) that there are specialized financial planners for this purpose, “preserving as much assets as possible due to medical expenses without loosing everything". Why do I share this? What have I learned? Consider buying long term disability insurance if the latter are not in place.
Sergio is getting better and better every day from the stroke. He transferred on his own today from the wheelchair to the bed. His speech and right arm have not improved, but his leg is improving. If he gets control of his knee back, he will be able to start working on walking. He wanted to come home so badly a few weeks ago and recently he has not. He was even dead weighting when they would try to train me. In many attempts of guessing why he doesn’t, I struck a chord when I asked him, “ Do you think you will be a burden on us?” He started to cry. Of course I started to cry, because what a foreign thought to me? And what a lousy feeling to even be processing on top of everything else he is going through: cancer, strokes, not being able to communicate, can’t work suddenly, not being able to socialize, the list is endless so I’ll stop. “Through sickness and in health.” This is what it means.
Now for the good news. God is good. As a family we have always teased Sergio about his “ten thousand friends”, but in this case it may actually be true. Over and over God raises another person at the right time who is there for us. To me at times I feel forgotten, but it’s not based in truth. The people who have carried us will continue to do so. Others have literally come out of years of memories or felt a tug in their heart and don’t even know us. God has the ability to fill in every gap. Perhaps it’s more grieving for loss of so many things. Sergio’s Home Health PT, and new friends, post surgery came over and did a run down of the house, our neighbors built us a ramp for Sergio to be able to get into the house, our other neighbor and friend fixed the living room light that had kept us in the dark for weeks, another friend gave us a ramp, another friend/neighbor changed the shower head in the bathroom for Sergio to be able to bathe, a friend of a friend poured concrete so we can have wheelchair accessibility, another neighbor and friend trimmed our bushes and put up the Christmas lights. The help and blessings have been endless. It is overwhelming, in a good way. Sort of like when you finally meet the right person and it’s going so well, you can’t believe it, even feel a little scared of such a good thing. There's even a tinge of guilt knowing that not everyone has support in their time of need, so why us? Perhaps and I am hopeful that it's experiences like this that propel us in directions we would not normally consider to venture in. Maybe and hopefully my children will choose who they become and what they will do with their time here for the betterment of others, of human life. God delivers the very things you ask for and somehow we still doubt His goodness. Families Helping Families heard about us, as well as Health Partnership at WACC and we’ve been swooped up under their guidance and care. A loving, loving nurse from Granada Friends Church, the same PT, and Health Partnership all came to support us in our last discharge meeting. Oh, and cookies. Yes, even that small detail. Two batches of Christmas cookies to decorate with Sergio for the girls. Something we do every year, but obviously I had forgotten all about that. We even got that.
Even with all this, even though everything I just mentioned all happened just this past week, I struggle with trusting God with all the details of our future. But I am human. Isn’t that crazy? What is crazier is how Faithful He is. That my weaknesses and struggles don’t change a thing about Him.
My God is a God of freedom. This is what I love and have loved most about God, even when I was a child. He gives us freedom under any circumstance, in any condition, from anything. Abuse, addictions, illness, poverty, wealth, wrongdoings, mistakes, others' words and even myself. He has been doing it throughout history and all I have to do is accept it.
Taline Abrahamian Perez
December Meals
Posted 12/07/2016 by Taline
Hey Everyone,
First off, I would like to thank you so very much for all of the support that you have shown Sergio, Taline, and their girls since August. It is an incredible display of love and sacrifice, and it is amazing to watch. I know that Taline is regularly stunned by the various forms of help that seem to arrive just in the nick of time.
Secondly, Taline has mentioned that one of the most helpful things during this time has been the meals provided for them. I know that it is the Christmas season, and everyone has extra activities on their schedule in addition to normal life. For the next few weeks, Taline asked us to move the meal help requests to Tuesday, Thursday, and Saturday evenings. Due to their visiting schedule with Sergio, Taline tries to have them eat earlier so that they can join Sergio during his dinner. That is the reason for requesting meal drop-off by 4p on the day of the meal request. You can also drop off the meal the day before at any time--just let Taline know when that would need to be.
If you can, would you consider signing up for a meal during December? And I ask this knowing that so many of you have already given and sacrificed in so many ways. Sergio, Taline, and the girls are forever grateful.
Thanks to all of you again for your support,
Hattie
Visit Sergio
Posted 11/28/2016 by Taline
Dear Friends and Family,
In a nut shell, if you can , you are more than welcome to visit Sergio. You can visit him for any time that works in his schedule for the day and for you. Radiation is at various times but therapy tends to be stable. Just let me know what day and time you'd like to go so we can work it out and he won't be exhausted from too many visitors on the same day. (PLEASE NO SICK PEOPLE. He is on chemo as well.)
He is very antsy. He wants to go home. We are on week 10 of being in the hospital. PIH and the TCU staff has been very good for him and to him. But my honey is an extreme extrovert who thrives from his relationships with people. Although I do think God is giving him an opportunity to seek his motivation and strength from Him even more and from himself (not an easy thing for an extrovert to do, get strength and motivation from yourself). I think he is doing a great job so far.
One of the medications has finally changed (due to a misunderstanding) that was given to him from City of Hope primarily to make him sleepy and less "agitated", and he his off Ritalin (a stimulant) to wake him up????? My point is he is a lot more alert and so is feeling where he is I think in more depth. He is struggling with depression (he communicates that it is A LOT OF SADNESS) and feeling alone.
Again, 15-30 minutes is good. He gets tired. I was recently reading an article that described why patients get so tired. Because they spend a lot of mental and emotional energy engaging with you, trying to entertain you, and even hide where they truly are so you are happy when you see them. It is exhausting.
Thanks for all the LOVE and SUPPORT. Where did you all come from? I am awed at what God brings to your life when you are willing to receive it. And that is not an easy thing to do. You are amazing and as cliche as it sounds, we are in pain but really do feel like we are being carried when we can't walk, at least the parts when we don't have to walk ourselves. And I do think I haven't had a nervous break down and one of the big reasons my kids are not loosing it because of our community who is pouring into us in so many ways. Sergio and I had told the girls that no matter what we would all be fine and that cancer would not destroy us. Who knew the depth behind our statement and what that would look like a week later? Not us.
" In the day of my trouble I will call upon Thee, for Thou wilt answer me." Psalm 86:7
Taline
Car
Posted 11/24/2016 by Taline
Hi Everyone,
If you'd like to visit Sergio on Thanksgiving Day, you can, 10-11.
Also, Grey Honda Accord LX for sale, black interior, $43,000 miles, in excellent condition, $13, 600. Contact Taline.
Update 20
Posted 11/24/2016 bby Taline
I haven't been able to write for a while for many reasons. Nairi got sick, then I got sick, I'm mentally exhausted from trying to figure out the best option for medical insurance when that stops, in addition to consistently getting different and inconsistent information about Medicare and CalStirs, not that I have options. I'm not sure. I don't want to fall into something that is not good for Sergio or us by default, thinking through other financial decisions and just processing feelings of disappointment and anger. You know, if I have nothing nice to say, don't say anything at all. The closest thing I can compare it to is a childhood memory I have of a neighbor who slaughtered a chicken. I had never seen that, and she explained that even though the head gets cut off, some times the body keeps running around. I feel sort of like the chicken. My brain is having difficulty staying connected, and my body just goes and goes and it feels like in no direction at all. The most interesting thing is somehow that chicken never ran into anything.
As Sergio struggles more and more with not being at home, it's harder and harder to cope with. We want him home, he wants to be home, and yet it is so complicated. It doesn't feel complicated at all. We should all be together, and the cancer should just go away. He should be living with us, eating with us, sleeping at home. We love him and truly love is blind. Even as his physique has changed, he is the same to us. His language sways in and out, but he is the same to us. There's even good and bad days or hours cognitively, but he is the same to us. I am glad for this, but it also creates an inability to see things as they are some times, or maybe the way other people see it. Psychologists might call it denial. Or just hope. I don't know if this is good or bad. It is what it is. And I'm not sure I'm convinced that it needs to be any different than what it is. Although I must say, my hope is catching on as everyone sees him getting better. Several people have been understanding him more, besides me now. I have been asking God to grant his speech back and so I wait.
So complication one and a prayer request is that he needs to progress to stay in transitional care, yet he's on chemo and radiation now which make him sleepy and tired. Added to that is he wants to come home ( he says repeatedly, "Our house, our house, our house" and has packed up twice now) which will lift his spirits and he might actually do better than he is, but how do we get him to radiation and back (no medical coverage for that and $400.00 a ride)? And how do we do home with kids, and school, and life so he is safe and does not end up back in the hospital with no help? How will I even wake up at night in my exhaustion? Thus trying to find other medical insurance options so we can pay for 24 hour care perhaps, or maybe he won't need that by the time he comes home. Too hopeful? From where my help will come from I do not know, but God does. It comes form Him often through people.
What I call confidence, the medical world calls impulsive, effort is not complying, and making decisions is not cooperating. Such different perspectives depending on where you are standing. But God knows the best timing, where and when Sergio should be somewhere. I do not. He knows who will visit him and cheer him up in that perfect moment when they are suppose to be there. I do not. He knows why he will refuse radiation when I can't be there. I do not. All I can do is my best and I think that is enough because God is bigger than me, bigger than Sergio, and bigger than cancer, bigger than all of our flaws and decisions. He can not be moved like that. He is not us.
Adriné has become more and more verbal and is actively seeking out people and friends who are able to receive her where she is, and she can talk to. She has already found a few friendships full of loving surprises. I wish I had learned that at age 10. Our dear little Nairi on the other hand is just now starting to deal with sadness, anger, and grief of loss of dreams she had of things she may not be able to do with her dad anymore. As time passes, the seriousness of this "cancer" is revealing itself in real time for her. All the things connected to "Baba" that are not there anymore and may not come back: omelets on Saturday mornings only Daddy could make, a doughnut run, playing with her dolls and doll house, playing in the back yard all the games with Baba that he taught them, discussing books, being read to, "big big hugs" that only Daddy did right, goodbye kisses, running to after work jump hugs, being able to ask him for advice on friends, new game ideas to play at school, and homework help only Daddy explained well because he's so "calm and patient", because "He's an elementary teacher." All things Daddy did which are profoundly missed. Both girls had made their plans and worked on their act for the Talent Show with Sergio and because of that I think, wanted to still do it even though they are exhausted. I think secretly they hope he will be able to attend and see them.
I am angry and I can feel it, but I also don't have time for it. I don't want my time to be wasted or any of our pain to not produce goodness. Everything in its time, I suppose. I think disappointment has been more energy sucking than any other emotion. But at some point (every day that is) I have to remind myself that God is in control of everything and everyone. Who is going to enter in our path, who will exit, who will just sit in the road, who will block the road, who will help, who will take our hand, and all of that is okay. I don't own the road.
Okay, I have to give a shout out to the public schools in Whittier. I have worked in several districts and this is by far full of the best teachers, administrators and staff as professionals but even more importantly as people...I am going out of my way to include everyone because literally Sergio loves you all and we do too. As he has often told the girls, "A good person is a good person, is a good person. And you can find them every where." Thank you for all your financial support from Laurel, Murphy Ranch and Granada. I take every envelop we get to Sergio and he opens them with one hand and his mouth, smiles, and says "Wow!" And I am completely giddy about our living room light being fixed ( didn't realize how much light effects me), the garage door being fixed, the toilet being fixed, the tissue roll being fixed, washing my car, the clothes for Sergio, all the time on the phone with several of you who encourage me, pray for me, give me medical and personal insight, our friend who spent hours helping me clean the garage so we can get ready for the all the equipment coming our way, and all the help with my girls!
I have much to be thankful for this Thanksgiving! For life, love, support, encouragement, unselfishness, generosity, assistance, big hearts, and God who gives us life and takes it away, but never abandons or forsakes us.
Taline
Prayer Requests
Posted 11/10/2016 by Taline
- Nairi is sad that she may not be able to go to the father daughter dance with Sergio. She's been waiting for this year to go.
- We were told Sergio will need 24 hour care when he comes home. It's a completely overwhelming thought financially, emotionally and mentally as I try to figure out who, from where, how etc?
- Direction with medical insurance which will end when disability starts. Accurate information and wise choices.
- Radiation and chemo start Tuesday. Pray that Sergio is minimally effected so he can continue his rehab so he can continue to stay in TCU. He has to be progressing in order to stay.
- Sergio is struggling with wanting to go home. He packed up his room a few days ago thinking he is going home. Today he was saying, "Our home" over and over as we were leaving from our daily visit with the girls. Very sad and hard for all of us to be separated. Harder for him. He is not home and he can't communicate verbally. All tears all around.
THANK YOU!
Medical Update
Posted 11/10/2016 by Taline
Sergio, although easily tired out, is progressing in small steps, inconsistently. They are no signs that the blood clot in his arm is progressing. He is set to have radiation and chemo starting Tuesday. Hopefully it will not have an adverse effect on him or tire him out to where he can not stay in TCU (because he is not progressing in therapy). He has said about 30 words and phrases at this point. He sings clearly. He can feel his right side now he says, although it hurts at times.
Thanks for keeping the visits short and sweet and not asking him lots of questions (since he will try to answer them but you will not understand him, tell him that or not respond appropriately and he will be very frustrated:) Please continue to sign up for visits and contact me for a different time if that doesn't work.
The staff at PIH has been amazing. He sleeps most nights, something he hadn't done since August. I'm so grateful for crossing paths with these people.
A Vignette of Adrine
Posted 11/10/2016 by Taline
Adriné has been worried and concerned about illnesses people can get now that she is aware of the harshness of cancer. Being sick doesn't mean having a cold or the flu any more. I have been told this a normal phase and thank God for my nurse friends who have patiently and tenderly "checked" her out, asked her questions and "undiagnosed" her diagnoses of herself. On one particular day, our friend was even leaving work, on her way home, in her blue outfit and was able to stop by and check out the tingling in her legs. Things have improved since then. After all that was the real thing, not mom who is not a doctor or nurse as it was pointed out to me.
God's timing is "perfect". As hard as that is for me to say, because it is not my timing at all, God's timing is perfect and without error. We are where we are suppose to be, going through what ever it is we are going through, even in pain, confusion, lost, directionless, angry, what ever it is. I know we cause some of that for ourselves through poor choices and thinking I know the best way to do something or I'm not willing to give up something I should be giving up instead of trusting God, being still, or doing what I know is right to do, but even that can be argued. Who am I to know how each of our lives is "suppose" to be? What lead to what? How the brokeness will be healed? God prevails over all of it, through anything and everything.
So Adrine´came home a few weeks ago in a grumpy mood. She is not a grumpy kid. It usually means she's hurt about something and not talking about it. I thought we addressed the issue as soon as we got home. Someone had left us a bag of MM's on our bench a few days earlier. They were so excited since I never buy candy that I put one in each of their lunches. That day, her two dear friends at lunch told her, "Stop Adriné! Don't eat those. The blue dye causes cancer. " Her friend was unaware that Sergio has cancer. And they had both recently gotten information about unhealthy foods and cancer causes ingredients in foods. (Although I will say, we were told by the neurosurgeon that medical experts do think brain cancer is genetics and environmental, something to think about). She had already eaten a few, decided not to eat the rest, and stuffed the candy along with her feelings in her pocket. After much talking, including to our dear neighbor/grandma who pointed out how lots of people do things that are not healthy and do not get cancer, I thought it was over.
Then before bedtime the flood gates opened, even though water had been seeping through all afternoon as she continued to struggle with homework and even her interactions with Nairi, which is rare. Nairi usually busts Adriné up. But she couldn't get one laugh out of her that day.
Well, it turned out, to be bigger than that. After much talk and many promptings it came out. " Adriné you know what is wrong. Just say it." "Ya, Adi, you know your body, don't hold it in. Just say it." Through echoing sobs, "Okay,... I've been trying so hard to remember if I ever gave Baba any blue MM's." Within a tight hug, I told her how that would have been impossible since she has no money to buy any candy and I never buy any so...where would she have gotten it from? She started to laugh I think from relief and the weight fell off her back.
Journal 16
Posted 11/06/2016 by Taline
A nurse had a great idea today. Open House visiting Sunday November 6, 2016 in dining Hall at TCU at PIH for Sergio Perez from 4:00 to 4:30. Sergio is starting radiation Tuesday, come see him and encourage him if you can. Please try not to ask questions to keep frustration down. He will try to answer but you will not understand him. Keep it simple. Just talk about yourself and your family and say words of encouragement. I say this in love. Please do not speak on behalf of God, what He is doing in Sergio's life, why He is doing it, or what Sergio should do. God has Him in the palm of his hands. He will tell Him Himself. He is a big God and the Holy Spirit is phenomenal and very good at doing that.
journal 15
Posted 11/02/2016 by Taline
Hi Everyone,
I am not normally a phone person, but it is good to receive all the calls and texts asking how Sergio is. The past weeks have gone by so rapidly. I know looking back it will be a time in my life where I will not remember the details but get to see the fruit of my labor in the people I love, Sergio, Adriné and Nairi. Like having a baby. Childbirth was the easy part! I appreciate your encouragement as I struggle to come up for air from the overwhelming weight and sudden change of everything in our lives.
Nairi asked last week if it was a possibility that "Baba" might not come home through big tears drops falling down her face. The time span of it all is sinking in for her. "What makes you ask that Nairi?" "Well, it's been a really long time. And it's longer than I thought it was going to be. And he is still not home." This is in contrast to other times when she says things like, " Momma, don't worry. I understand. This is a tough week for you because now you are doing two jobs." after I apologized to her for snapping at her for doing 6 year old things. Children are amazing and totally worth it. And what a blessing to know that they know how important Daddies are and what a big "job" they do for their children because of Sergio. Nairi continually tries to play games with Sergio when we visit daily (it's really cognitive therapy) because that's what they did every day when he came home. It has been working out fantastic as she sings to him all the songs he taught her about numbers, days of the week, months etc. You name it, Sergio had a song for it. Right now, although his speech is still impaired, he can sing quite well. Hymns, Adele, James Taylor, ABC's, tons of kids songs, and last night Adriné made up a song about having to go to the bathroom so he can sing it to indicate that.
Adriné is doing much better as she talks more and more to people she looks up to who have all shared your anxieties with her affirming how normal it is. She asked Sergio if he was mad at God this week and he said , "No." Then she asked if he still loves him and is still a Christian and he nodded "Yup." She finally told me, " This is life. I am mad at God but I still love him." Yeah! What a difficult thing it has been to watch for me. Waiting to see if your child will be bitter as she gets swept away by the waves and give up God (because I have seen that before) or be able to accept life for all the good it has to offer in it's brokeness.
Our daily visits with Sergio have predominantly been good. A few bad days here and there. We act surprised when that happens because we forget he still has a growing tumor. He is almost ready to start radiation as my anxiety level escalates in hope that he will respond well and even really well or maybe not. Another cliff hanger, and I have never liked surprises of any kind. I told Sergio when we were dating to not tell me he loves me (when it was obvious he did which was very early on), unless he was also going to ask me to marry him. He obliged with a big grin. He says that's when he knew I loved him. About two weeks later he said both things to me. It seems he does best with routine, so the days I absolutely can not be there because of something at school or paperwork that has to be picked up or dropped off, he has a pretty hard day not wanting to participate in therapy.
So even with the rigidity of his visiting schedule right now, please continue to visit or call me for a better open 15 minutes that day. He thrives from those visits and tries so hard to communicate which is a great thing. He is lucid and will recognize you. He knows when there are activities going on for the girls and will encourage us to "Go!" so the girls will not be late. Last night as we visited him he said, "Hi Honey." He is also bending his right leg now and moving on to grounded and chopped foods.
The ups and downs are the hardest for me because I truly do not posses the ability to be objective right now, not that I expect that from myself. This is my best friend, protector, and the person I enjoy being with the most who is sick. I have always been willing to give up anything to have a "date night" with Sergio. Obviously, my love language is time. I'm okay with being a mess and crying every time you ask me about him or how I am doing. Exhaustion, sleep deprivation ( like now at 3:53 am ), trying to balance time with him, the girls and doing the things I have to get done (then the other things I have to get done) has much spillage over the side and just being overwhelmed have stolen that gift I use to posses temporarily.
Thanks again for all the short and long distance visits. I know he loves you guys. The cards, sharing your heart more specifically. Sergio is big on words. All the help financially, emotionally, and physically. Here's a few of the things I am grateful for: fixing Adriné's bike, teaching her how to make skid marks, helping my kids with homework, trimming my bushes in the rain, taking my car to change the tires, posting, setting up, and correcting things on the computer for me, still bringing meals, going to meetings with me, taking notes for me, getting my kids' Halloween costumes, picking them up, dropping them off, praying with us and for us, acknowledging us, calling us, writing us cards, letting me call you in the middle of the night, taking out and bringing in my trash, watching my kids last minute because I really need to see Sergio, paying our bills, watching my kids so I can go to the hospital, giving my kids gifts, playing with my kids, feeding my kids, washing my dishes, cleaning my house, inviting us to things even if we can't go, hugs, visiting my honey, checking in and offering to help, asking me what I need every time you go to the store, shopping for me, participating in our lives, adopting us into your families, reminding us of what is true, encouragement, fixing the plumbing, fixing my bed, music, therapy dogs, going beyond your job description, taking time off to see Sergio, helping my kids with homework, sorting through bills with me, sharing your expertise and knowledge with us, helping with legal papers, spending time with us, and being our friends and family and making sure we remember that no matter what in Sergio's words, "Everything will work out for the best." Just as He closes doors to force us to move on to where we need to be, He opens doors too.
With Much Love,
Taline
Sergio Needs Motivational Cheerleading
Posted 11/01/2016 by Mina Taylor
At this time it is imperative for Sergio to be engaged in his OT, PT and speech therapies. Without his participation he will be put in a nursing home. Taline is his foremost and usually effective cheerleader but sometimes she can't be there. So we need a list of folks who could be on call any given day to cover for her between 8-12. You wouldn't need to stay for the whole time. While there you would just kindly encourage him to work at whatever the staff is offering for therapy. If you could be available to do that SOME times can you please sign up under the calendar on November 30th between 8 am and 12pm. You will NOT be visiting that day- it will only be a place that Taline can look for the list of standbys.
Thank you again!
Sergio's Energy Level Declines with Too many Visitors
Posted 10/27/2016 by Mina Taylor
Dear Friends:
Late night Sergio had 8 visitors and it was TOO MUCH.
He was exhausted.
Please, PLEASE do not visit unless you have signed up here or have Taline's ok. And if you visit, 15 minutes is ALL he can handle. Even if he seems to be doing well, his energy level is depleted and then his physical, occupational and speech therapy does NOT advance.
We really appreciate your kindness in wanting to visit but this is a serious matter.In about 7 days radiation will begin and we may need to adjust visiting further, but for now the schedule has been updated. 4-4:30 every day. Only 15 minutes per person. And only 2 people per day.
Thank you for your love and co-operation.
journal 14
Posted 10/25/2016 by Hattie McHale
UPDATE: I have cancelled all visitors temporarily until Taline knows the new schedule. If you have already signed up to visit these next couple of days, please contact Taline for times that would be good. I will update this site shortly with new visiting hours.
Thanks so much for your patience and willingness to be an encouragement to Sergio and the family.
Journal 13
Posted 10/24/2016 by Hattie McHale
Because Sergio is working very hard in physical therapy, he gets tired out very easily. So, Taline is asking for no more than 2 visitor to come at the same time in the afternoon. I will let you know those times when they are solidified. She only wants people there for 15 minutes to just touch base and give a word of encouragement or tell Sergio about what is going on in your own life. Medical questions for him are overwhelming and tiring. So please stay positive and focus on encouragement or maybe a fun story to share with him. He is sleeping well through the night and making progress at PIH. It has been a blessing for the family to be so close so the girls can see him more too and the drive for Taline is minimal. I will post more on the calendar when I hear from Taline, about times. Thanks so much to all who care and have loved on the Perez family. They feel so supported.
update 12-Adrine's poem
Posted 10/21/2016 by Taline
My Sad Story
Iʼm feeling sad right now.
I donʼt know what to do.
My dad has brain cancer.
So you can see why Iʼm blue.
Cancer really sucks.
It causes people pain.
My dadʼs missing work right now.
Heʼs in the hospital. Itʼs such a drain.
My sisterʼs sad as much as me.
And my momʼs on the phone.
I donʼt go home after school.
Itʼs hours till I see my home.
I feel Iʼm missing out on things I use to do before.
All I do is catch up on homework that is overdue.
Heʼs not here to say goodnight.
Seems like a lot of things give me a fright.
I still want to complain
and ask God why?
Iʼm only 10,
and Iʼm not ready to face the end.
The only thing thatʼs good right now
Is all the help we get
From people who care for us
And tell us not to fret.
We still have each other,
But no matter how many friends we have,
It still doesnʼt fix my dad whoʼs in his hospital bed.
update 11
Posted 10/21/2016 by Taline
This was Wednesday night:
Adriné's and Nairi's prayers tonight after a lengthy conversation over weather God is healing him or not. Nairi says God is healing him slowly. Adriné says he might not take the cancer away and he might die which will suck because she will miss him and be the only kid in the world without a dad.
Nairi :
"Lord, Thank you for today. For a great day. We got to see Baba and eat and talk with him. He seems happy. Help us have a fine day tomorrow because each day is a NEW day and it's all going to be fine God. If he dies like this (spreads her arms across the bed and stops breathing and pretends to be dead) or if he doesn't, either way it's going to be fine. It's going to be fine because if he dies he is going to be home with JESUS!!! and if not, he can still be here with us. Amen."
Adrine:
"God, heal him. Heal him. Heal him. Heal him. Did I mention heal him? Any time you want, heal him. Heal him. Heal him. Now is good. Heal him. Heal him. Heal him. Why wouldn't you heal him? Heal him. Heal Him. Help us to get a dog. Heal him. Thank you for being with us. Amen. "
update 10
Posted 10/21/2016 by Hattie McHale
Hello Everyone,
I'm just going to give a medical update in response to all the questions I've been getting.
Sergio is in Whittier at PIH in the Transitional Care Unit. He did not qualify for acute rehab. He is just not there. This is a blessing for us though because he is near us, he is happy to be in Whittier (although he was upset yesterday and was saying, "not home" and refused to do any therapy all day at City of Hope), and the girls can see him every day now which always makes his day.
Today was his first day. They worked him. Got him in a wheelchair with a lift, let him brush his teeth, eat in the dining room, ordered an AFO (splint) to support his left leg so he can start working on walking, got a swallow test to see if he can go on to non pureed food. He eats too fast still which is a choking hazard and also can cause aspiration and penomia if it goes down the wrong tube. We are thrilled he is in rehab because that means he can potentially come home and is very strong on the left side. He can not just lay in bed. He began to feel his right side today and has been lucid for a few days since we changed one of the medications, except for when he is tired. And although City Of Hope is a great cancer center, they are not a rehab or stroke center and did not really know what to do with him. What they call uncooperative (trying to get out of bed, sitting etc), rehab calls potential, effort and a good thing. It was a very frustrating experience, mostly for Sergio.
He has a blood clot in his arm which can potentially move up to the brain. He still has the clots in his brain. He is on blood thinner for the clots which could potentially cause a hemorage. And he is suppose to get radiation maybe in two weeks, which the stroke has delayed. He has stage 4 Glioblastoma, which is a very aggressive brain cancer.
Emotionally, he is struggling. He is sad, depressed, frustrated, but also will sing, dance, smile at me, try to talk to visitors, and yesterday as clear as day yelled ,"no!" when I told him he needs to do the PT, and right after said ,"I love you."
I asked him if he is mad at God and he said,"No." This is why I married this man. He told us the day of his surgery when Adriné asked him how he could sleep during the night when we couldn't. He said, " The Lord's got me Adriné. Everything will work out for the best. And you will be fine baby." He is solid. He continues to tell me to "Go home." around the same time in the afternoon to be with the girls. He was saying this before the stroke. He is great dad and always puts his kids before himself. They miss playing with him, but we will work on coming up with new games.
It is comforting to know that God does not change. Our circumstances, lives, health, relationships, wealth, everything can change except God. He is good.
He is full of mercy, love and is taking care of all the details, even the smallest. He never forsakes us or abandons us.
Thank you for all the hands carrying us through this, all the prayers that are being answered, and for loving us in whatever way you are able. It all matters and all makes a difference in our lives.
Sincerely,
Taline
NO personal VISITS till Saturday October 22 please.
Posted 10/18/2016 by Mina Taylor
Attention friends and family of Sergio Perez.
Good news: Sergio has been transferred to the Transitional care unit at Presbyterian hospital. In order for him to get settled well, please HOLD OFF on all visits until Saturday. That is NO VISITING until Saturday October 22nd and then check Mealtrain for scheduling. THANK you for your prayers and support and cooperation.
update 8
Posted 10/17/2016 by Hattie McHale
In response to the goodwill offered by Sergio and Taline's friends and family, here are ways to help respond practically to their current needs.
https://www.youcaring.com/sergio-perez-669404
or
https://www.gofundme.com/sergioperez
YouCaring takes 3% and Gofundme takes 8%.
For a way to give withOUT any fees subtracted you can send a check to Taline Perez c/o PO Box 1275, Whittier, CA 90609
Paypal also takes no percentage of monetary gifts given- we will post info on that soon.
Thanks everyone for your help of any kind. Prayers for the stamina and peace of the whole family are needed.
update 7
Posted 10/17/2016 by Hattie McHale
I've always liked numbers and letters. In the end, I liked reading the thoughts of others more than numbers so I was a literature major. But recently the number three has taken on new meaning for me. I use to connect it to my sisters and I, the trinity, the three men who died on the cross, when the Romans practiced crucifixion, and for some reason it meant a number of strength for me.
Today, it's a number that means one of us is missing from home. Three place settings instead of four, three sets of towels hanging (which I couldn't tolerate anymore so I hung up the forth), three of us driving around, sitting in my kids' assemblies, three of us attending church and on and on. The absence is felt and is very hard to get use to. It is not normal and feels like a tearing away of your own flesh. I don't think I'm suppose to get use to it. I sleep on my side of the bed because the other is Sergio's side, except he's not there right now. But I dare not go over. It feels wrong. I wait to have down time after I put the girls down, only to find myself alone on a couch where we use to sit to talk. What a sad number it has become.
The short term goals are gone for now. Instead the long, hard journey with no surprise ending is setting in. God is God and he can do all things. I believe that. And yes, it is possible to have hope and prepare for the worst, to live life and dread it, to be grateful and grieve all at the same time.
We have been fortunate enough to have an army around us who is supporting us, loving us, and praying for us even from other cities, states, and even countries. We are very very blessed. I know this does not happen to everyone. But it should. Even with that, it is still difficult and does not give us any free passes, but God is with us, at our side, daily reminding us that we are not forgotten through the people He has created in His image. It's mind boggling to think that God is a million times what we are experiencing through all of you.
We have recently adopted three more grandmas, and our family is growing daily and growing strong. Sergio has never been one to find his security in money. He just doesn't have that need. Not irresponsible, but doesn't need money to feel secure. Just like our health, even money can be gone in a day, just like all of the things we put our security in. As it turns out, once again, he was right, what else but people matter? What is there that people can not accomplish together? And " ...What can mortals do to me? " (Hebrews 13:6) when God is my helper?
The week has been crazy. City of Hope needs to discharge him because there is no "medical" reason to keep him. He cannot walk or sit yet (although he finally sat balanced today with no help for about 10 seconds), and is eating pureed food himself, saying, "Nooooooo!" when I try to help him. There's definitely some umph left in him:) This means he cannot come home yet. I cannot transport him or care for him in a way that he would be safe. But he is wants to come home. He tore out is pick line this morning and has been frantically trying to communicate, although usually it leads to more frustration. He did not qualify for acute rehab in two hospitals (where he would've been able to get radiation on site set to start in 2 weeks). Insurance does not cover transportation and a non emergency ambulance ride runs $300-$400 for one round trip ride.
Please pray that God work that out. There is a transitional care unit at PIH which could potentially allow him to start radiation until he is able to sit, etc, inorder to go home and be transported. There is one good thing when your life is so out of control that finally you become fully aware that there isn't anything you can do to solve or fix any of the problems, so what do you do? You learn to trust God and just hand it all over to Him. I have handed it all over to Him.
Adriné does better when she is distracted, so she ran for secretary at school and won. Nairi was so happy for her. Nairi does better when she has time with us and is able to talk freely for as long as it takes. Both girls entered the Reflections contest at school and both did something about their dad. They'd been talking about it since the start of school and fortunately I asked just in time about the deadline to get them in. The best thing about that was they got to express themselves, honor their dad, and do something positive with their pain. And turns out, my kiddo can write poetry and the other can draw (which runs in the family and we already knew).
"Let go. Then you will know that I am God. I rule the nations. I rule the earth." Psalm 46:10
(Nairi's picture will be updated on Sergio's facebook page)
update 6
Posted 10/11/2016 by Hattie McHale
Hi Everyone,
Sergio is physically getting better. He moved his right leg a few times in the last two days. I think as more people visit and tell him that you can recover from a stroke, the more he believes (Faith comes through hearing). He wants to get out of bed and move, but his body just isn't there yet. He is very frustrated and sad/depressed recently which is normal I would think considering the circumstances. He is able to comprehend and will respond on the phone. I can't imagine what my social extroverted talker is going through as all those things have been cut off right now. But God is strong, stronger than us and can carry us though the hardest times. We are trying to qualify him for an acute rehab center for the stroke until we start radiation and or perhaps to it simultaneously.
Those of you who know my dad, well he is the dad on "The King of Queens" with the added bonus of crying easily and an Armenian accent. He loves Sergio and well, he walked into Sergio's room, started crying and Sergio started crying and they both cried together. My dad, although not a believer himself, encouraged me my entire life to wait for the man "who was like me", meaning religiously and values. And so when he first met Sergio he said, " He is good. A good guy and good for you. He is just like you." And he was right.
It's very difficult to find the balance between who and where to spend my limited time and energy. Between my husband and my children, between paperwork and life tasks, between rest time so I don't get sick and time with my love. And again because of our wonderful friends and the homes they have created my kids go hesitantly but return edified. Thank you.
Please pray for grandma who has been sick and who happily comes to stay at our house so the girls can stay in their own house when she can. This is Nene's and Abuelo's second child who has brain cancer. What are the chances of that? Their second child at City Of Hope, the second time waiting in the same rooms they waited the first time. They love their son.
Adriné is doing much better. We have discussed deep topics quite in depth. She has the best questions and I see her being strengthened by this experience even in her pain. We have decided that cancer is not going to destroy us, tear us apart or even move us in our Faith, not even a bit. As she was crying the other night yelling, "Why won't God just take it away? " My little Nairi replied after running to her and hugging her saying, "Let me hug you Adi, you need a hug. This is a tough day for you. God is not taking it away because He doesn't want to, at least not now." So simple and true. In the moment like Sergio. Although I go out of my way to make sure I drop them off at school, I am not always able to pick them up. She is having a hard time with this and would like me to figure out how to pick her up as well. I will try.
With Gratitude for My Love,
Taline
Update 5
Posted 10/07/2016 by Hattie McHale
Dear Friends and Family,
It is so difficult to write on so many levels. I have no energy. I can't even catch my own emotions and thoughts as they fly in every direction with every new conversation I have with medical personnel and people who love us. It seems like there is a new event every day. I suppose underneath it all, I would really like to believe that I can control or change something, but I can't. I can't even wrap my head around it, the cancer and everything it means for him, for the girls, for our present and future.
Sergio is recovering. He is out of ICU. The clots are still there. He is strong and trying very hard to move his right side, which he is accomplishing little by little. He sat up and bent his right leg several times. He is very frustrated about his inability to speak right now but as of yesterday the nurses began to understand him as well as me because he was mad. But in Sergio style when I asked him if he was angry, depressed or sad, he said, "no". But when I said, "Are you a little sad?" He nodded "yes." He sings to James Taylor and worship CD's. He really has survived a lot. We have been calling and saying goodnight to him and he is very responsive. The stroke delays the radiation however so pray for a quick recovery so we can get started. He was able to eat applesauce and a smashed banana today. The things we take for granted!
The girls are doing better as they grapple with understanding a side of life that was hidden from them. Nairi wants to see him and Adriné is nervous. They are doing well in school but fall apart outside of school (including lunch and recess). I think I am nearing the end of the paper mountain I have had to shrink one paper at a time, for now. I could not have done it without the help of so many of you who have helped me, some of you don't even know me and are a friend of a friend, or Sergio's friend. Thank you. I feel blessed and adopted into a family by Granada and forever grateful for all the help by all our friends, neighbors and community.
It is an amazing thought and feeling to know that I am married to a great man, the perfect man for me, the "it was worth the wait guy", a wonderful father who has poured into his kids beyond and more in 11 years of marriage than some fathers do in a life time of years, and the loving husband who has healed wounds no other could. I tell him these things and he smiles.
" O thou chief musician, let us not remain songless because affliction is upon us, but tune our lips to the melody of Thanksgiving." Taline
update 4
Posted 10/03/2016 by Hattie McHale
I spoke with Taline on Saturday. I will be updating this site on Sundays and Thursdays, unless there is an urgent message to get out. Here are some ways in which you can help:
Gardening
Housework
Visiting Sergio--a maximum of 2 people at a time (ICU visitor limit rule) anytime between 9a and 8p. The occupational therapist has requested that guests step out of the room during meals, so that Sergio can re-learn how to chew well. The therapist has observed that the presence of visitors distracts him from concentrating.
**Look on the calendar for dates that you can sign up for**
If you would like to contribute another way, they could use Costco cards (for gas, driving to and from City of Hope), and food; or Trader Joes and Walmart.
Thanks again for all your support and prayers for the Perez family.
update 3
Posted 10/01/2016 by Hattie McHale
Earlier this week, Sergio was taken to the City of Hope. The drs found he was experiencing mini strokes due to blood clotting from the surgery last Friday (which by the way, they were able to remove about 80% of the tumor). There were 3 blood clots. They gave him anticoagulants to thin his blood. This helped thin out and pass along one clot. He had a little trouble with communication but was alert. They were helping him get a communication board figured out. The hope is that when all the blood clots dissipate that he will be able to come home.
For those of you who would like to visit, please check back at the Meal Train calendar this weekend and we will update that information as well as any updates I receive about Sergio's progress.
update 2
Posted 10/01/2016 by Hattie McHale
Here is Taline's 2nd email to keep you up to date from the beginning of this journey...
Dear Friends and Family,
I apologize if I have not called you back or connected with you. I just can't keep up. Email or calling is best. I will pick up if I can. If you know someone who would like updates, please tell them to send me their email address.
The whirlwind continues around us. Well, maybe more like a hurricane with us standing in the middle of the eye. And although I feel like someone poured concrete into my hallow body I seem to find the strength to do what needs to be done. The night time medication stopped for now so that helps with the sleeping and waking up on time.
Sergio's report came back as stage 3 Glioma Astrocytoma. There are many unknowns that attach themselves to that word and stage. Fortunately, we were able to get in Tuesday at USC and Wednesday at City of Hope after many calls and faxes and a cancellation. Both surgeons said pretty much the same thing. They said they could remove most of the tumor with no permanent damage. We were in disbelief but hopeful. We've decided to go with Dr. Baddie at City of Hope because he was a little bit older and seemed to have a more broader perspective of life which includes for us FIGHTING and ACCEPTING. The plan is to remove as much as possible, hopefully 80-90% on September 20th (Nairi's birthday who's turning 6) and then do radiation and chemo at the same time to try and shrink the tumor and kill the rest. He even mentioned a vaccine City of Hope is currently working on to take after going through radiation once (because radiation can't be repeated) which will come out as a trial so the tumor will not come back. We were told it will take about six months and if all goes well, perhaps he can even go back to work. It is amazing what they can do! It is so complicated how God allows our minds to imagine glimpses of His perfection and also at the same exact moment He can remind us that He is still in charge and nothing we do can change what He has decided or allowed.
For those of you who know Sergio well, you know he is a calm, happy, uncomplicated transparent person. He always hopes for the best and always chooses to see the best in people even when they mistreat him. He forgives easily, has lots of grace for others, and is attached to nothing but people and God. He is exactly like this in the appointments as well. I heard him start telling people he has cancer about three days ago, but that he's going to fight this and not give up. He says I'm having a harder time with it. I say, I'm more expressive and overwhelmed emotionally and physically with everything that needs to happen. However, the nurse practitioner caught up with us after the appointment in the hall and told Sergio, " I love your attitude and perspective. Keep it up because that is half the battle. My dad had this same tumor and he gave up the day he found out what it was. I think it makes a difference." I think it is true, although I can't grasp it with my rational mind. Many people in our lives have demonstrated this through their struggles of all kinds. There's definitely more to us than just our bodies.
Sergio is tired but almost fully back to himself from the open biopsy. He loves all the visitors and can handle about 30 minutes. So come, but call me first or ask him to check the schedule. He is not looking at the calendar and says yes to everyone, and then is exhausted and he is the only one paying for it. We are so grateful, encouraged, and blessed by all the help and company. We truly could not do it without your help. It does take a village and we both live like that. The meals (because I think we all would be sick without them by now from eating junk because there is no time to cook), presents for the girls, calls, emails, texts, hugs, kind words, watching out for our children, teaching them, coordinating, picking up our kids, dropping them off, housing them, helping with homework, allowing for play time and even my dear friend who bathe them for me. Who knew that simple task would become so complicated. All those connections too! It's a different atmosphere when so and so knows so and so, rather than waiting alone with your thoughts for the hurdle to pop up while you are running 100 miles an hour. Some of you know where those hurdles are and others of you are right there extending your hand for us to grasp as we jump over those hurdles.
We have started a "We Are Thankful List" suggested by a friend and it has changed the entire atmosphere in our home. The girls seem to be doing well under the circumstances. Adriné, my thinker, has been asking lots of hard questions as well as expressing her fears of death, homelessness, starvation, poverty, and on and on. And every time without a doubt God delivers through one of you. You have delivered the perfect words to rest her soul. I am sooooo grateful for that. I am so thankful for the people in our lives, those of you around us and far away who remain close to my heart. Truly, in the end, what else but people matter? My spunky, expressive Nairi reminded Adriné the other day when I could not find the words to help her stop crying, "Adi, listen! Let's all pray and try to remember that Baba (Sergio) is not dying right now, I mean around this time. He is still here and no one knows that. Calm down." This is following a few days prior when she explained something to me. " Mama, I know that people are really inside the body, and that's why the shell doesn't matter, I mean you can't judge people from the outside. I know your spirit goes to heaven but that is still a sad thing. You know why?" "Why Nairi?" "Because the problem with that is that the spirit is invisible to us and we can't see them anymore so we will miss them because we can't see them or hug them, and stuff like that."
Please pray for us as our family deals with so many things on so many levels, for Sergio's recovery and that God will strengthen our backs to carry this.
Luv,
Taline
update 1
Posted 10/01/2016 by Hattie McHale
Family and Friends,
This will be a place where you can find updates about Sergio and their family. You will be able to find out what their needs are in regards to picking up the girls from school, watching them after school, as well as signing up for visiting Sergio and updates about his progress. Taline is becoming inundated with phone calls and texts and emails. If you have any questions in regards to the areas said above, please just look here. We will update as soon as there is something new to report. Please respect Taline's time and energy as she is reserving that for Sergio, the Doctors, and the Girls. There's a lot of new information she's receiving each day and can be overwhelming, so please feel free to check here first or call Hattie Mc Hale (562)324-1321 or Mina Taylor (562) 547-9340 or Mishawn Tremper (562)298-3791. Thank you for caring for Taline, Sergio, and the girls. They feel and know your love and care for them. Please be praying for God's healing touch upon Sergio and as they walk through this unknown time of sickness and new schedules.
Here is Taline's first email regarding what took place at the beginning Sergio's medical issues:
Dear Friends,
I have received a tremendous amount of phone calls today. It has been a long day just waiting to find out not the best news, but at least we know now and can move forward.
Sergio's is good doing great in ICU, talking, walking and making the nurse call for me. None of this is confirmed until the pathology report comes back, but it appears that it is not a benign mass, which has turned out not to be too "massy" actually, but more web like touching important structures such as his artery and optic nerve.
We do not what type yet or the grade, from 1 -4 and that can make a huge difference in treatment and statistics.
And although I have great respect for science (since God is the best scientist I know) this is not just about science and statistics. God gets to decide what he will do just like he did with my mother by giving her life over two years over the few month estimate. We will see.
If I have missed anyone, please let them know. It was not intentional. As you can see it is almost midnight.
Thank you for all the support, cards, calls, messages of love, and food! It makes me feel abundant of all the good things life has to offer.
For those asking, I will let you you know shortly how you can help. My friends Hattie and Mina will be starting a meal plan soon once we figure out what life will look like so the girls and I an spend the most amount of time together. Thanks for helping. We really really appreciate it.
And although Sergio has loved the over 50 visitors in three days ( we counted 18 yesterday), there are no visitors right now. He really needs to sleep mostly in order to recover. Please call before you visit from this point on for right now. This does NOT mean don't come. It just means my husband knows and is loved by a lot of people so I really need to spread out the love! You guys know his wedding list alone just for his side, not including everyone he wanted to invite was over 500 people originally :)
Lots of Love,
Taline
