Our "Normal life"... Nuestra vida "normal"

 

What a roller coaster this past month has been... I have no idea how many times we have been told that Andy is getting closer to death, but this last time was the most real one and I can’t believe what we went through.

Sometimes I used to tell myself that I was so ready for whatever was about to come, but now going back to that moment where we were told he had 24 to 48 hours to live, I realize that no one can never ever be ready to lose a spouse 

After Andy woke up saying that he was ready to keep fighting and ready to go home, a lot of things have happened and we had to make a big transition for the better. We decided to come back home and enjoy whatever time we have left. It sounds easy; it sounds simple and easy but coming home was more complicated than it sounds. My family from Mexico was here the first couple of days, but they went back to Mexico 8 days ago. The day that they left I realized that that was it. This is our new life, this is our new normal and I wasn’t sure if I was ready for it.

If you ever know someone that has a family member in hospice at home please tell them how much you love them, because (I swear I am not complaining) but it’s a LOT of work.  I am grateful to have him home, it has been SO nice to see how much the kids enjoy him, they have breakfast  together, they read stories, color, play video games, they are truly enjoying every single second of it.

 

When I start thinking about how much this process is worth it, I go back to a conversation that I had with little David after daddy got back home. He said, “I can't wait to play X-box with daddy, I thought I was never going to be able to play with him ever again!” So yes, it is SO worth it to be on hospice at home! have had a lot of texts or messages on Facebook asking for an update on Andy, I try to read all of them but I haven't been able to sit and write a detailed update. Right now it’s just me, Andy and my two kids, so by the time they are in bed all I want to do is go to bed too! :)
 

 Andy had his second treatment of "Keytruda" this past Tuesday. The day of the treatment everything went great, we had to transport on a stretcher because he is not able to be sitting in his wheel chair for too long.

He had the treatment and a couple of doctors’ appointments and everything went great. We got home and things were okay still. He didn't get any of the side effects until this past Friday, he started getting this bad heartburn and he wasn't able to eat or drink anything the entire weekend. Sunday he was pretty sick, his pain was so bad, this is a new pain not his long time common pain. This was more like esophagitis or some kinds of sores in the mouth, and in his stomach and esophagus.

Sunday night nurse came and he started some new medications to help with this new problem.  Monday: his pain was there still, he had a bad morning still not being able to drink or eat but luckily he was able to get some hydration bags because he was getting dehydrated. At the end of the day (Monday) he was feeling a little better and he was able to eat a tiny bit of chicken noodle soup.  

Yesterday, Tuesday, was a big day for Andy, he had a lot of appointments again and he had an MRI, labs and more... We spent all day at the Mayo Clinic, and we got some not too happy news, we were told by the neurosurgeon that Andy wont be able to walk again, never ever again, that the neurological damage is done and that he believes is irreversible. He said he could do a surgery but the benefit percentage is really really low and the risks are really high, that it would mean at least two months admitted in the hospital and 6 months of recovery, they would pretty much have to cut his spine in two, take a big part of it and replace it with a metal peace. Even with all this he says he is not sure if the surgery would be successful and instead of helping it can hurt him even more. So no surgery for Andy. No matter what the doctors said we learned that we will always put our faith first, Andy is decided that he will walk and I have to believe on him. He probably wont have a surgery but he has thousands of people praying for him!

 Going back to treatment 1, he got his treatment on a Tuesday, then 6 days later, on a Monday was when he got super sick and when the nurses told us that he was going to die. This time on treatment 2, on day 6 was when he was super sick again but not like last time, so I am grateful that things were not as bad as last time.
  

 One if the biggest and most exciting things is that he is NOT using OXYGEN anymore!!!!!!!! On treatment 1 he was using up to 4 liters all of the time and now he is on no oxygen. Nothing. "Nada"! The oncologist said that this was a great sign. :)
  

Other than this bad heartburn or stomach pain, and before this past Friday, he was doing great. We have been able to have long conversations, laughs, watch shows together, and the kids have been doing nothing other than enjoying daddy.

 I am SO grateful for all of your help! Dinners are something that is making my life easier!  I have had so much help from so many people that I would forget someone if I try to be specific, so thank you, thank you, I am alone with two kids and Andy, but I never feel alone because of you.

   

I have been thinking on what is the purpose of all of this? This past week on September 17^th of last year, was the day that we found out, when Andy was playing soccer that his cancer was back. We were absolutely, incredibly happy before that. Our life was perfect and awesome and I started thinking why Heavenly Father wants Andy on this earth? What does he need to accomplish here? He has had SO many opportunities to go back to Heaven but he is still here, he is not going anywhere anytime soon, so what is the rest of his mission here?

Yesterday a sweet couple came over to our home to drop dinner off, they said hi to Andy and they told me, “We don't know Andy, we don't have any friends in common, but we heard his story, and he has inspired us SO much. We pray for him on daily basis, we are so proud of him and we follow his example. When I am having a bad day,” the wife said, “I just read about Andy and think if he can do it I can too...”

  

So why is Andy around still? Just for this, to inspire people, to teach all of us that no matter what your trials in life are, if you follow the example of our Heavenly Father, if you have faith and believe in Him, you can conquer anything. You can't stop fighting even when doctors, science and people tell you that you are done, if your faith is strong, if you believe that there is a true plan, something bigger than earthly things, you will be okay...

Andy, as I always repeat and as we all know, is an amazing man. He is going through so much, he has suffered an unbelievable amount of pain, his Cancer is so aggressive and bad but his faith and his desire to spend quality days with his kids is bigger...

 He will never quit, he will never stop believing, he will never complain, he will always enjoy life no matter what. I am so proud of him, we seriously make a great team. He is able to get out of the bed by himself using his upper body and I watch him with so much respect. His mind is so strong and positive and his mind is set on walking again soon.

Thanks again for all of your love, this is our new "normal life" this is our new "routine" as even that it hasn't been easy we are enjoying every single second of it.

Love, Leyla 

*PICTURES BY Jessica Downey Photo
Slideshow:

https://youtu.be/j7yDXhx7YEc

 

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ESPANOL:

Este mes que ha pasado ha sido una montaña rusa ... No tengo ni idea de cuántas veces se nos ha dicho que Andy morirá, pero esta última vez fue la más real y no puedo creer lo que hemos pasado.
A veces me decía a mí mismo que yo era fuerte y valiente para lo que viniera, pero ahora que todo se remonta a ese momento donde nos dijeron que tenía de 24 a 48 horas de vida me doy cuenta de que nadie puede estar listo o preparado a perder un esposo
Después de que Andy se despertó diciendo que estaba dispuesto a seguir luchando y listo para ir a casa, un montón de cosas que sucedieron y tuvimos que hacer una gran transición para mejorar. Decidimos volver a casa y disfrutar de todo el tiempo que nos queda. Suena fácil, suena simple y fácil, pero volver a casa era más complicado de lo que parece.
Mi familia de México estuvo aquí el primer par de días, pero regresó a México hace 6 días. El día que se fueron me doy cuenta de que eso era todo. Esta es nuestra nueva vida, esta es nuestra nueva normalidad y yo no estaba segura de si estaba preparado para ello.
Si alguna vez conocen a alguien que tiene un miembro de la familia enfermo de gravedad, en cama en silla de ruedas o enfermedad terminal, diles cuánto los amas porque (les juro que no me quejo), pero es un mucho de trabajo. Estoy agradecida de tenerlo en casa, ha sido muy agradable de ver lo mucho que los niños lo disfrutan, tienen el desayuno juntos, leen cuentos, colorean, juegan a los videojuegos, se que están disfrutando verdaderamente cada segundo de la vida. Cuando me pongo a pensar en este proceso tan doloroso, recuerdo una conversación que tuve con el pequeño David después de que papá volvió a casa. Él dijo, no puedo esperar para jugar X-box con papá, pensé que nunca iba a poder jugar con él nunca más! así que sí, vale mucho la pena aunque que sea en un hospicio en la casa. He tenido un montón de textos o mensajes en Facebook pidiendo razón de Andy, trato de leer todos ellos, pero no he sido capaz de sentarme y escribir una actualización de detalle, en este momento es sólo yo, Andy y mis dos niños, así que por el tiempo que está en la cama todo lo que quiero hacer es ir con ellos y disfrutarlo. Andy tenía su segundo tratamiento de "Keytruda", el pasado martes, el día del tratamiento todo ha ido muy bien, hemos tenido que transportar en camilla porque no es capaz de morse silla de ruedas durante demasiado tiempo, él tenía el tratamiento y un par de citas médicas y todo salió muy bien, llegamos a casa y las cosas estaban bien todavía. Él no tenía ninguno de los efectos secundarios , hasta el viernes pasado, comenzó a tener un ardor de estómago y no era capaz de comer ni beber nada todo el fin de semana. Domingo estaba bastante enfermo, su dolor era muy fuerte, este es un nuevo dolor no su t dolor común, esto era más como esofagitis o algunos tipos de úlceras en la boca del estómago y el esófago, El Domingo la enfermera de la noche llegó y le dio algunos medicamentos nuevos para ayudar con este nuevo problema. El Lunes: su dolor estaba allí todavía, tenía una mala mañana, todavía no podia beber ni comer, pero por suerte fue capaz de obtener algunas bolsas de hidratación porque él estaba deshidratado. Al final del día (lunes) se sentía un poco mejor y que era capaz de comer un poco de sopa de fideos de pollo. Martes es un gran día para Andy, él tiene un montón de citas de nuevo y él tendrá una resonancia magnética, laboratorios y más ... Recordando su primer tratamiento de Keytruda , el tuvo su tratamiento en un martes, luego de 6 días después, el lunes fue cuando llegó súper enfermo y cuando las enfermeras nos dijeron que iba a morir en 2 días, así que esta vez sobre el tratamiento 2, en el día 6 fue cuando él se sentía súper mal de nuevo, pero no como la primera vez, así que estoy agradecido de que los efectos esta vez son menores. Lo mas emocionante es que ya no esta usando la maquina de OXÍGENO !!!!!!!! sobre el tratamiento 1 que estaba usando hasta 4 litros todo el tiempo y ahora nada de nada de oxígeno "nada"! el oncólogo dijo que se trataba de un gran signo y buen avance lo dijo con emoción y sonrisas. Aparte de esta mala ardor de estómago o dolor de estómago, y antes de que el pasado viernes, que estaba haciendo muy bien, hemos sido capaces de tener largas conversaciones, risas, reloj muestra juntos, y los niños han estado haciendo nada que disfrutar de papá. Estoy agradecida por toda su ayuda, las cenas son algo que están haciendo la vida más fácil! He tenido mucha ayuda de tanta gente que iba a olvidar a alguien si trato de ser específico, por lo que gracias, gracias por estoy sola con dos niños y Andy pero nunca me siento sola gracias a ustedes He estado pensando acerca de por qué es el propósito de todo esto, La semana pasada, el 17 de septiembre era el día en que nos enteramos, cuando Andy estaba jugando al fútbol que su cáncer había regresado. estábamos absolutamente increíble feliz antes de eso, nuestra vida era perfecta y genial y me puse a pensar por qué el Padre Celestial quiere a Andy en esta tierra? ¿qué tiene que lograr aquí? Él ha tenido muchas oportunidades para volver al cielo pero todavía está aquí, ¿Cual es su misión aquí en la tierra? Ayer una pareja muy querida por nosotros vino a nuestra casa para dejar la cena , saludaron a Andy y me dijeron, no conocemos a Andy, y no tenemos amigos en común, pero hemos escuchado su historia, y tiene Inspirado tanto otros como a nosotros, oramos por él diario, estamos tan orgullosos de él y seguimos su ejemplo, cuando estoy teniendo un mal día, la esposa dijo: Acabo de leer acerca de Andy y que si él puede hacerlo yo también puedo hacerlo ... así que ¿por qué sigue aquí Andy? sólo por eso, para inspirar a la gente, para enseñar a todos nosotros que no importa sus pruebas en la vida , si sigue el ejemplo de nuestro Padre Celestial, si usted tiene fe y cree en él, usted puede conquistar cualquier cosa, todo se puede que NUNCA SE DEBE DEJAR DE LUCHAR” incluso cuando los médicos, la ciencia y la gente diga que no se puede, si la fe es fuerte, si usted cree que hay un verdadero plan, algo más grande que las cosas terrenales, todo va a estar bien ... Andy, como siempre lo repito, y como todos sabemos, es un hombre increíble, ha pasado por mucho y sufre increíblemente una cantidad de dolor insoportable, su cáncer es tan agresivo y malo, pero su fe y su deseo de pasar días de calidad con su niños es más grande ... Él nunca abandonará, nunca dejar de creer y de pelear, él nunca se queja, él siempre va a disfrutar la vida no importa qué. Estoy muy orgulloso de él, en serio somos un gran equipo, El que es capaz de salir de la cama solo con la mitad de su cuerpo funcionando y se le mira con tanto respeto, su mente es tan fuerte tan positiva y su mente lo pondrá de pie muy pronto Gracias de nuevo por todo su amor, esta es nuestra nueva "vida normal", este es nuestro nuevo "rutina", y aunque no ha sido fácil estamos disfrutando cada segundo de ella. Apenas ayer nos enteramos despues de haber visto a un neurocirujano que Andy jamas va a volver a caminar, despues de muchos estudios y varias pruebas esa fue lo que acordaron los docores, pero en esta experiencia he aprendido que con fe todo se puede, que tenemos miles de angeles orando por nosotros y que los Milagros SI existen!
 Con carino
Leyla





I´M ALIVE!!!..... Estoy vivo

I have had the most emotional, painful and stressful week of my entire life... On Monday morning I was here at hospice when Andy kept asking me for Mia, so I went over to our house and picked her up. Once she was here, Andy said take her back home please. I insisted that I wanted her to stay but he asked that I take her back home. I did and when I came back my brother in law Ben was here. As soon as I walked in, Andy started getting really sick. He started throwing up, his heart rate went up to 190, and his pulse was slowing down, as well as his breathing. The nurse was crying and talked to me and said please call his family or whoever you need to call, I feel like he has 24 to 48 hours - she was not the only one that told me that, every nurse, nurse's aid, even the doctor thought that he had 48 hours. So, I called everyone and the rest of my family flew back from Mexico. Part of his family was here too. We all didn´t sleep and we all said our good-bye's. I cried so much, so often, I was in shock and he did look like he was ready to go back to his home in Heaven.

In fact, he kept talking with angels. He said it so often, that one angel was always to his right and he said there were a lot of them in the room. He also told me that some animal angels were here. When my brother and sister got here, the three of us were singing some of Andy's favorite songs and Andy smiled and said, he really liked this song. I asked who really like that song? He whispered, the angel that is here and he turned his head to his right - he said keep playing it, he likes it.

Another time I was laying down in his bed, his respirations were slowing down so much, I was thinking that was going to be the moment. He was asleep must of the time but then he said, hey, hey you, this is my wife Leyla, he turned to me and whispered "say hi" and I said hi! I am Leyla. Andy said, "Isn´t she beautiful?" And I asked, "Who is this?" Andy said, "Another angel, they are always here... "

That night I realized that Andy was ready to go back to his real home in heaven. He told me that in his "dreams" everyone said it too. He looked like that, it felt like that, we were literally waiting for his last breath, counting how many times he was breathing a minute. We were just waiting and getting ready for that.

Two nights ago I had a little "problem" with someone here at the hospice. This person said that Andy couldn't die because my family kept coming into the room and he couldn't be in peace because they wouldn't let him go. This person asked them to please just stay away so he could go, because he was ready. After praying for an answer, I went to this person and said, he loves my family, they are an extended family for him. He talks to my brother on a daily basis and he makes him laugh. He tells my mom all of his good times and bad times and calls her almost every day. He calls my sister a daughter. He loves my family and he will die whenever Heavenly Father wants him to go. If he doesn´t go, it is because Heavenly Father has a different plan, not because my family doesn´t let him.

I went back to Andy´s room and I prayed for some peace and for some understanding of what is happening. I prayed for signs of light. I couldn't sleep at all that night and around 6 in the morning my sign was sent...

Andy woke up, talking, lucid, alert and said I want to talk to you. I know that the facts are different, I know that the doctors and nurses think I am ready to die and some people have given up on me. Please "mi vida" don´t give up on me, please don´t give up on me, I am not ready to die, I want to get my next doses of "keytruda." I am not dying right now, don´t give up on me... and even if I die, if Heavenly Father wants me to go right now, I will follow him but I will die fighting. I will die trying, I will die not giving up.

So I believe in him!!I will never give up on you ANDY, we will never give up on you, we will be fighting next to you until the end. "I will never quit," he said.

We are waiting to see how this week goes and will try to go home soon. Yesterday he had blood in his urine his breathing was a little faster and he was more alert. He ate and watched some TV and he still looks pretty sick but he looks way better than a few days ago. He really wants to go home, even if we have to come back to hospice soon. He really wants to be back home, so we will try to make it happen. Today when he woke up he told my brother, "I bet you anything that people at the hospice are saying, 'Seriously, when is this guy going to die? Who is this guy?'"

He was laughing and my brother was joking with him and said I am going to burn the suit that I brought for your funeral, and Andy was laughing and said I felt like I was dying too but remember, I always get up!

I am not sure of what the future holds. I don´t know if he will die this week or the next one or in months in the future but I know that I am not going to listen to absolutely anyone anymore - not the doctors, the nurses, family or anyone. The only one that knows is Heavenly Father. This week I learned that He truly is the only one that knows what's happening. I will trust and believe on him, I will accept His will, I will listen to what He is trying to tell me. I accept his will, no matter what, if it is hours, days, weeks or months, I will be okay with it, after knowing that we had just two days with the love of my life I realized that I wasn´t really accepting Heavenly Father's will. I was more worried about my pain and forgot that He has a plan, that He knows when and will always be with me. He sent those angels to this room to show me and let me know that He is with us, that we will never be alone, that Andy has an army of angels watching over him and I will trust His plan.

Thanks so much for your love and prayers for the past week. I apologize for the confusion and pain that this week brought to all of us but I hope you can feel the way I feel - faith is stronger than anything else and Heavenly Father is the only one in control. Andy is one of a kind and he will fight til the end. I love you Andy, I love you so much and I will never give up on you!!!!!!!!
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ESPAÑOL:

He tenido los dias mas dolorosos, dificiles y estresantes de toda mi vida 
El lunes por la manana entramos aqui al hospicio, y Andy siempre me esta preguntando por Mia, fui a la casa por ella, para llevarla con Andy; cuando llegue Andy 
me dijo: Llevatela por favor, te dije que la trajeras pero mejor llevatela a casa, lo que hice fue regresarla a casa. 
Mi Cunado ben estaba aqui, en cuanto entre a su cuarto Andy comenzo  sentirse realmente mal, el comenzo a vomitar heces fecales,  su coraz'on latia a 190 y de 
momento fue disminuyendo, asi como su respiracion, el estaba respirando solo 3 veces por minuto, la enfermera comenzo a llorar y me dijo por favor llama a su familia 
o a quien necesiten llamar, siento que solo tiene 24 a 48 horas de vida, no fue la unica que me dijo eso, todas las enfermeras me dijeron que maximo 48 horas tendria, 
y asi lo hice, llame a todos, el resto de mi familia volo de  Mexico, parte de su familia estuvo aqui tambien, no durmio nadie ese dia, todos le dijimos adios, llore muchisimo 
estuve varias veces en shock, y el parecia estar listo para regresar a casa "el cielo". 
De hecho el frecuentemente se mantuvo hablando con angeles, y decia que un angel estaba muy cerca de el, a SU DERECHA, Hay muchos en el cuarto, de hecho me dijo que habia 
animales, angeles con forma de animal o animales con forma de angeles, hay muchos y estan aqui. 
Cuando mi hermano llego aqui, mi hermana el y yo cantamos canciones que a el le gustan, y dijo " A el le gusta mucho esa cancion" yo le pregunte A QUIEN? 
el contesto con un suspiro: al Angel que esta aqui, senalando a su derecha a un angel que solo el podia ver. 
EL dijo: sigan tocando al angel le gusta. 
Me acoste en su cama y su re4spiracion estaba muyn lenta, yo estaba segura que ya era la hora, que esa seria su hora de partir.

El estaba adormilado, la mayor parte del tiempo, y se la pasabe diciendo, hey!! ella es mi esposa Leyla, el volteaba y me decia Leyla di Hola. 
y pues yo dije Hola, sin seguir viendo nada, es hermosa verdad? dijo Andy , y yo le pregunte con quien hablas y El le contesto, otro angel, El siempre esta aqui. 
Esa noche yo me di cuenta que Andy estaba listo para partir a su verdadera casa en el cielo, El me dijo eso en sus suenos, y todos pensabamos lo mismo, eso parecia y asi se 
 sentia,literalmente esperabamos por su ultimo suspiro contando cuantas veces respiraba por minuto y estabamos solo esperando a que sucediera. 
Dos noches atras yo tuve un problemita con alguien aqui en el hospicio esta persona dijo que Andy no podia morir porque mi familia estaba aqui y que no lo dejabamos partir 
y que Else mantenia con nosotros sin estar en paz, y esta misma persona le pidio a mi familia que se alejara para que el pudiera partir. despues de orar por una respuesta yo 
 fui con esta persona y le dije: El ama a mi familia, ellos on una familia para El, el habla con mi hermano todos los dias y mi hermano lo hace reir y reir, el es su mejor 
amigo, el le cuenta a mi madre todos sus problemas o felicidades, el habla con mi madre casi todos los dias, llama a mi hermana "hija" y ama a mi familia y el va a 
morir cuando Dios quiera y si no se va es porque Dios asi lo quiere y el tiene otro plan mas no porque mi familia no lo deje, volvi al cuarto de Andy y solamente pedia 
por paz, rogaba que alguien me entendiera lo que estaba pasando por lo que ore por una senal y una luz, no pude dormir en toda la noche y a las 6:00 am mi senal aparecio. 
Andy desperto hablando , lucido, alerta y me dijo mi vida quiero hablar contigo, yo se que los hechos dicen otra cosa , yo se que los doctores y enfermeras piensan que 
voy a morir, mi familia se rindio, la gente se rindio, los doctores se rindieron por favor "mi vida tu no te des por vencida" yo no m voy a morir, quiero y voy a obtener 
 la proxima dosis de Keytruda no me voy a morir hoy  no te rindas y aunque muera si Dios quiere que me vaya me ire, pero me voy pataleando, voy a morir peleando y voy a 
morir sin darme por vencido y en ese momento le crei, tampoco me dare por vencida , no nos daremos por vencidos y vamos a morir peleando. 
Estamos esperando esta semana y estamos con la esperanza de regresar a casa aunque sea por un dia , ayer su orina tenia sangre , su respiracion estaba un poco rapida pero 
el estaba alerta, Andy comio y miro television, pero seguia luciendo muy enfermo ,pero se ve muchisimo mejor que los dias anteriores, el desea de corazon ir a casa , aunque 
regresemos al hospicio pero el desea llegar a casa y estamos haciendo todo lo posible para que esto suceda. 
Hoy cuando desperto le dijo a mi hermano: te apuesto todo a que la gente en el hospicio esta pensando cuando ira a estirar la parta este canijo?, de que planeta es? y 
estuvo riendo y bromeando con mi hermano y mi hermano le dijo voy a quemar eltraje que empaque en este viaje para tu funeral, Andy se rio y dijo la verdad si senti que me iba 
a morir pero recuerda yo siempre me levanto, no se que nos depara el futuro y no se si morira esta semana o la proxima o quisa en unos meses, lo unico que se es que no 
voy a escuchar a nadie ni a nadie, ni a los doctores ni a los enfermeros, ni a mi familia ni a nadie, solo voy a hacer caso a mi padre celestial y que esta semana aprendi 
que solamente el sabe que va a pasar, creo y confio en el y voy a aceptar lo que el decida , voy a escuchar lo que el me quiera decir y aceptarlo no importa lo que sea, 
si son dias , semanas o meses, yo voy a estar bien despues de saber que nos regalo una semana mas de amor en la vida. 
Me di cuenta que no estaba del todo aceptando lo que Dios quiere y estaba preocupada por mi y mi dolor y me olvide por un momento de su plan y que el sabe cuando sucedera y que 
el esta conmigo . Estoy segura que el mando esos angeles a mi cuarto para ensenarnos que el esta con nosotros, que nunca estaremos solos y que Andy tiene un ejercito de 
angeles cuidandolo . 
Gracias por su amor y por sus oraciones de esta semana y perdonenme por la confusion y el dolor que les cause pero espero que puedan sentir asi como yo siento esta fe mas 
fuerte que nada y que Dios es el unico que tiene el control. Les aseguro que Andy es uno de esos hombres que morira peleando y me prometio que no se rendira jamas . 
TE AMO ANDY TE AMO MUCHO Y TAMPOCO ME DARE POR VENCIDA!

Last days with Andy

I don't have too much time or mind to write I just wanted to update everyone . Doctors think we have around 48 hours or so with Andy. We are at the hospice facility close to the LDS temple in gilbert, AZ. 

Please keep praying for him so he can be free pain and have so much peace soon.

Also for those who asked where can they donate here is our fundraiser

Thanks

https://www.youcaring.com/leyla-moss-423938

Thank you!

Leyla

Terminal Cancer? The words no one wants to hear...

I have been trying to write down what’s going on with Andy, but believe it or not there is always something going on and I haven´t gotten a chance to sit down and update the blog.

So a week and a half ago Andy started having this severe pain in his lower back, I told him we should go to the doctor and he said, “No, I will be okay.” Thursday, things got worse and I told him we should go to the ER but he didn´t want to he said, “Let’s wait until tomorrow.” He was afraid that if we came he was not going to be able to come back home. 

Fridaymorning we came to the ER and he was right, he got admitted right away. The pain was awful he was not doing well; his heart rate was super high, his blood pressure was low, and the pain was horrible, they tried everything and still he was not feeling any better.

They did tons of test and they found out that the Cancer has grown all over his spine. The T12 and the T 10 (I believe) is full of cancer, his vertebra, the adrenal gland, part of his kidney, two tumors in his liver, muscle, nerves, and a few days later we found out that also 8 tumors in his chest. 

So the reason he was having so much pain is because the cancer is getting into one of the nerves that helps you pretty much walk and of course because the bones in his spine are full with freaking Cancer. 

Three days ago he started showing some weakness in his legs, he wanted to walk but every time he tried he just couldn't do it. Two days ago he couldn't walk anymore but he was able to still move his legs. Yesterday he couldn’t even move his legs, so he definitely can’t walk at all or move his legs.

He also started presenting some incontinence, I doubted in writing about this but after talking with him we agreed that we want people that are going through something similar to know. We want them to know that physical damage it’s just that. Physical. Anyway, he is wearing a diaper and yesterday they had to put a catheter because he couldn't pee anymore on his own. He has to wear diapers and getting him out of bed is such a project but no matter what he remains positive, he keeps having a smile on his face and he doesn´t complain about anything.

His favorite thing ever is when the kids come to see him, he loves to sit with David and look at his baseball cards, or sit with Mia and color with her. I have been trying to spend more time with the kids because they miss their daddy so much.

Yesterday Andy’s oncologist (AKA an Angel) came to visit him at the hospital, we talked about what Andy wants and what things can be done. A couple months ago we started the process of finding a medical trial for Andy. Thanks to his condition and the aggressive type of Cancer that he has, it is really hard to find a different option in terms of trials. Especially because most of the trials won’t take patients that already had a stem cell or bone marrow transplant. SO the options for Andy were not very many. They started doing all the research and all the genetic studies and they found out that one of the sequences of Andy’s Cancer qualifies him for this thing called INMUNOTHERAPHY and the name of the medication is KEYTRUDA. Once that we found this out his doctor started trying to find the way to get his medication for him. His insurance won’t covert it at all, and each medication is $35,000 dollars and he would need it every 3 weeks if it works. Of course we can’t afford that so she sent an application for a compassion organization and we found out yesterday that they approved him!!!!!!!!! 

You can watch a video about what Keytruda is here:

His oncologist wanted to make sure that we know that this medication won’t be a trial for him because it hasn´t been tested in his type of Cancer ever before. He will be the first person ever with this type of Cancer that will be trying this new medication. She wanted us to know the risk of this trial, that the side effects can make his condition even worse, or it can work and it can teach his cells to fight against the cancer cells. She also wanted us to know that the neurological damage can be permanent or not, at this point she said that it’s so hard to say what it will happen and that we won’t know until we are there.

She said that she will leave it to Andy and she will do and respect his wishes. So Andy told her... “Just throw me everything that you have, I can take it. At this point what else can I lose, if it works great and if not at least patients in the future will be able to benefit from my experience and this way I can help others and at least  you will know that it doesn’t work, just give me everything that you have and I can take it...”  So we will try that medication soon and see what happens...

I am with him, I respect all of his decisions and I will be next to his side in every single step of the way and in anything that he wants to do... He will stay here at the hospital for few more days until he can get that Keytruda. After that we need to make a decision of where he needs to be, either home care nurse, or high skilled nursing home, or something like that. Since he can’t move or do anything else for now, I definitely will need help taking care of him. I am not worried at all, I know that Heavenly Father will guide us and will help us in every single thing just like He has done.

Thanks to my sister and brother in law we have been able to take the kids to a counselor and have some kind of guidance in how to talk to them about what’s happening. I finally had to tell them that daddy will probably go home with Heavenly Father and that it will probably be soon. David asked a lot of questions, he was confused and mad, he wanted to know every single detail of it and he asked why I keep praying for him to be okay and why even with all this prayers he is going to go to Heaven. I told him that his prayers are working, that daddy had the opportunity to enjoy a wonderful amazing summer next to him and Mia and that if daddy goes with Heavenly Father he won’t have pain anymore and the most important thing he will be patiently waiting for us until we can meet him again and then we will be able to spend all the eternity next to him... He asked will I be able to play baseball with him in Heaven? I told him of course! Everything will be perfect there!

On the other hand little Mia broke my heart, when I had the same conversation with her my sweet girl just cried and cried, I told her at bed time and I was hugging her as she was crying, she asked me is it going to be today? I told her, no baby girl not today but it will be soon, she said tomorrow? I said I am not sure when but I want you to know that whenever this will happen I will  be here with you and daddy will be always here next to you too, even if you can´t see him. Then things got worse after she asked, wait I won’t be able to see him anymore? Can he just come back for a minute at least a night? I explained to her that once that he is in heaven he can’t physically come to see us, but we will be able to feel his spirit and he will never ever leave you he will be always here with us. She was freaking out and me too. I tried to be strong and calm as much as possible but it was definitely one of the hardest things that I have ever done.

Who knows what will happen, or when or how. All I know is that I love Andy so so much, and that I feel his unconditional love too, that If I had the choice of doing this or not I would totally do it all over again because I love him. I don´t care if he can´t walk or if he can´t move or if I need to change a diaper or if I need to stop and freeze life. I absolutely don’t care and I know with all my heart that if the tables were turned there is no doubt in my mind that he would do absolutely the same.

My intention with this blog post is the next. If you are going through a hard time in your life, if you feel overwhelmed and worried about what’s happening to you. Just stop, drop everything and stop, take a minute to look around and you will see that there is always beauty and blessings around you, Andy has taught me that even when your body doesn’t move, doesn’t respond, the most important thing in you is your heart, soul and thoughts. Don’t let the world overwhelm you making you think that physical things are important, because they are not, as long as your heart, soul and mind are in a good place, nothing else can take you down.

Thank you so much for keep supporting us in so many different ways. Andy loves visitors and his room looks amazing with all of your cards.

Love

Leyla

On Sun, Aug 16, 2015 at 12:03 PM, Leyla Moss <leylamoss@hotmail.com> wrote:

---

Date: Sun, 16 Aug 2015 11:53:34 -0700
Subject: blog
From: leylamoss@gmail.com
To: leylamoss@hotmail.com

I have been trying to write down whats going on with Andy but believe it or not there is always something going on and I haven´t get a chance to seat down and update the blog.

So a week an a half ago Andy started having this severe pain in his lower back, I told him we should go to the doctor and he said, no I will be okay. Thursday things got worse and I told him we should go to the ER but he didn´t want to he said lets wail until tomorrow. He was afraid that if we came he was not going to be able to come back home. Friday morning we came to the ER and he was right, he got admitted right away. The pain was awful he was not doing good his hear rate was super high his blood pressure was low and the pain was horrible, they tried everything and still he was not feeling any better.

They did tons of test and they found out that the Cancer has grown all over his spine the T12 and the T 10 ( i believe) is full of cancer, his vertebra, the adrenal gland, part of his kidney, two tumors in his liver, muscle, nerves, and few days later we found out that also 8 tumors in his chest. 

So the reason of why so much pain is because the cancer is getting into one of the nerves that helps you pretty mucho walk and of course because the bones in his spine are full with freaking Cancer. 

3 days ago he started showing some weakness in his legs, he wanted to walk but every time he tried he just couldn't do it, 2 days ago he couldn't walk anymore but he was able to still move his legs, yesterday he couldnt even move his legs, so he defitnetly can´t walk at all or move his legs.

He also started presenting some incontinece, I doubted in writing about this but after talking with him we agreed that we want people that are going through something similar, we want them to know that physical damage its just that. physical. Anyway, he is wearing a diaper and yesterday they had to put a catheter because he couldn't pee anymore on his own. He has to wear diapers and getting him out of bed is such a project but no matter what he remains positive, he keeps having a smile on his face and he doesn´t complain about anything.

His favorite thing ever is when the kids come to see him, he loves to seat with David and look at his baseball cards i¡or seat with mia and color with her. I have been trying to spend more time with the kids because they miss their daddy so much.

Yesterday Andy´s oncologist (AKA an Angel) came to visit him at the hospital, we talked about what Andy wants and what things can be done. Couple months ago we started the process of finding a medical trial for Andy. Thanks to his condition and the agressieve type of Cancer that he has, is really hard to find a diferent option in terms of trials. Specially because most of the trials wont take patients that alread had a steam cell or bone marrow transplant. SO the options for Andy were not very many. They started  doing all the research and all the genetic stodies and they found out that one of the sequences of Andy´s Cancer qualifies him for this thing called INMUNOTHERAPHY and the name of the medication is KEYTRUDA. Once that we found this out his doctor started trying to find the way to get his medication for im. His insurance wont covert it at all an each medication is $35 000 dollars and he would need it every 3 weeks if it works. Of course we can´t afford that so she sent an aplication for a compassion organization and we found out yesterday that they aproved him!!!!!!!!! 

You can watch a video about what keytruda is here:

His oncologist wanted to make sure that we know that this medication wont be a trial for him because it hasn´t been tested in his type of Cancer never before, he will be the fisrt person ever with this type of Cancer that will be trying this new medication, she wanted us to know the risk of this trial, that the side efects can make his condition even worse, or it can work and it can teach his cells to fight against the cancer cells, she also wanted us to know that the neorilogical damage can be permanent or not, at this point she said that its so hard to say what it will happen and that we wont know until we are there.

She said that she will leave it to Andy and she will do  and respect his wishes. So Andy told her... just trhow me everything that you have, I can take it. At this point what else can I loose, if it works great and if not at least patients in the future will be able to benefit of my experience  and this way I can help other and at least  you will know that it doesn´t work, just give me everything that you have and I can take it...  So we will try that medication soon and see what happens...

I am with him, I respect all of his decisions and I will be next to his side in every single step of the way and in anything that he wants to do... He will stay here at the hospital for few more days until he can get that keytruda, after that we need to make a decision of where he needs to be, either home care nurse, or high skilled nursing home, or something like that. Since he can´t move or do anything else for now, I definetly will need help taking care of him. I am not worried at all I know that Heavenly Father will guide us and will help us in every single thing just like he has done.

Thanks to my sister and brother in law we have been able to take the kids to a counsuler and have some kind of guidness in how to talk to them about whats happening, I finally had to tell them that daddy will probably go home with Heavenly Father and that it will probably be soon. David asked a lot of questions, he was confussed and mad, he wanted to know every single detail of it and he asked why I keep praying for him to be okay and why even with all this prayers he is going to go to HEaven. I told him that his prayers are working, that daddy had the oportunity to enjoy a wonderful amazing summer next to him and Mia and that if daddy goes with Heavenly Father he wont have pain anymore and the most important thing he will be patienly waiting for us until we can meet him again and then we will be able to spend all the eternity next to him... He asked will I be able to play baseball with him in HEaven? I told him of course! everything will be perfect there!

On the other hand little Mia broke my heart, when I had the same conversation with her my sweet girl just cried and cried, I told her at bed time and I was hugging her as she was crying, she asked me is it going to be toda? I told her no baby girl no today but it will be soon, she said tomorrow? I said i am not sure when but I want you to know that whenever this will happen I will  be here with you and daddy will be always here next to you too even if you can´t see him. Then things got worse after she asked wait I wont be able to see him anymore? Can he just come back for a minute at least a nights ? I exolained her that once that he is in -heaven he can´t phisically come to see us but we will be able to feel his spirit and he will never ever leave you he will be always here with us. She was freaking out and me too. I tried to be strong and calm as much as posible but it was defitnelty once of the hardest things that I have ever done.

Who knows what it will happen, or when or how, all I know is that I love Andy so so much, and that I feel his inconditional love too, that If I had the choice of doing this or not I would totally do it all over again because I love him, I don´t care if he can´t walk or if he can´t move ir if I need to change a diaper or if I need to stop and freeze life, I absolutly don´t care and I know with all my heart that if the tables were turned there is no doubt inmy mind that he would do absoltly the same.

My intention with this blog post is the next. If you are going trhough a hard time in your life, if you feel overwhalmed and worried about whats happening to you. just stop, dop eberything and stop, take a minute to look around and you will see that there is alway beauty and blesings around you, Andy has thaught me that even when your body doesnt move, doesnt respond, the most important thing in you is your heart, soul and thaughts, don´t let the world overwhalmed you making you think that phisical things are important, because they are not, as long as your heart, soul and mind are in a good place, nothing else can take you down.

Thank you so much for keep suporting us in so many diferent ways, Andy loves visitors and his room looks amazing with all of your cards

Love

Leyla

Cancer sucks less with Zac Brown Band #teamAndy #sunsetsforAndy.............Cancer es mas facil conZac Brown Band

After two years battling with mediastinal germ cell Cancer, Andy, 31 yrs old, has been admitted several times in different hospitals, he has had tons of chemo and transplants and we have spent days and nights in a hospital room. I remember one specific day after one of the strongest chemos that he has had, when the pain meds were not enough, when the nausea meds were doing nothing, I remember him asking me to get close to him to give him a hug, I remember him asking me please do something please help me... After realizing that doctors and nurses were doing everything that they could I ask him, what about music in the ipad? He said please put Zac Brown Band. "No Hurry" (Andy's favorite song) started playing and I remember how Andy slowly started to calm down.

Zac Brown music has such a big meaning for our family; his music has been close to us in our darkest and happiest moments of our lives. I honestly have to admit that I was not a big fan, coming from Mexico where country music doesn't exist I had no idea of who Zac Brown Band was until Andy introduced me to their music. I can tell you that one of our happiest memories as a family is driving in the car with the music really loud, my two kids in the back singing to the top of their lungs to "No hurry" , " Toes" or "Chicken Fried". Another song that makes me cry is "Whatever it is" since it’s the song that Andy dedicates to me.

Anyway, after finding out that Andy's Cancer was back for the 3rd time and that is now stage 4 Cancer spreading to his spine, I decided that we needed to make his bucket list, I sat down one day with him at the hospital and asked him, what are the things that you really really want to do? One of them was going to a Zac Brown Concert. I wrote a blog post that same day.

Little did I know that a big crazy blessing was about to come. I didn't know but I found out that my mother in law contacted the Zamily sending them my blog... if you are like me you would be asking yourself what is the Zamily? Well it is a family, a family that is integrated by Zac Brown Band fans... One of the members of the Zamily, Jennifer McFarlane, saw my mother in law's post and she didn't blink to start working on helping Andy. With the help of Jenny T Bird Gabriel, Sasha, and more and more people in less than 24 hour they had everything ready for us. Jennifer gave me a call to let me know that the Zamily donated money to make Andy's dream come true, they got us plane tickets, money for a rental car, food, tickets to the concert ( in the PIT) and Kristee Proctor donated her Eat and Greet tickets so Andy could meet Zac. My friend Candace Spurlock booked a hotel for us.

Going on a trip was not easy, Andy is in a lot of pain, can't really walk or talk that much but I knew how special this trip was going to be for him ...We left Arizona not knowing what an amazing time we were going to have. First we met with some of the Zamily members and T Bird for a gathering at a restaurant, T bird, the Zamily manager is one of the sweetest down earth people I have ever met, her sweet words and hugs and smiles are priceless, she gave us our tickets and was so so amazing with us.

 When we got to the Eat and Greet we never expected what it was going to happen. In Andy's head, the fact of just going to Zac Brown Band Concert was enough; we never expected anything else or never imagined what was about to happen. T bird let Andy be the first person to get at the eat and greet, as soon as Zac Brown Band got into the place immediately Zac got close to Andy, he got down since Andy was in his wheel chair and he talked to him.

Andy says he told Zac how much his music has helped him during time of trial and Zac was the nicest with him. You would think that someone this famous and with all these people around him would be cold and careless, NO! He was so nice with Andy and he has no idea what his actions meant to my husband. Pictures and videos are not allow at the eat and greet but they made it happen! They took us to the back and Zac came to take a picture with Andy and talked a little bit more with him. Clay, one of the members of the band came to talk to Andy too and asked him what do you want to hear tonight? Andy said, my favorite "no hurry" Clay said we are not playing that tonight but let me talk to Zac.

Tbird the Zamily manager assigned a security guy to be with us and the Zamily helped us save spots in the PIT so Andy could be comfortable and safe. I will never forget Andy's face when the concert started, he was SO happy, I was in tears all night.

 

During the concert Zac made sure to get close to Andy several times, to point at him, fist bump him, they gave Andy the tambourine during the concert, the guitar pic, the drum sticks.

 

During one part of the concert Zac tossed tshirts to the public and Tbird came to the stage and handed me t-shirt with autographs for Andy and two other t-shirts, she also printed a picture of her Andy and me with the sweetest words on it.

 After that Zac gave white roses (each rose to each girl) to the girls that were in the PIT and he gave 4 roses to me! Can you imagine how I felt? To me it was so meaningful it was like someone saying thank you for everything that you are doing for your husband! It really touched my heart. A girl pulled my hair because she wanted to steal one of the roses!! ha-ha they get crazy and intense!

 

Close to the end of the concert Zac started talking and he said, this song is for my friend Andy Moss, and he played "No hurry" I cried and cried non stop its like his hymn, at the end of the song Zac got close to Andy to shake his hand as he explained who Andy was, he talked about how the Zamily made this trip this possible and at the end he said "We love you Andy" as the venue was screaming, clapping and standing for Andy... did you get goose bumps? I know I still do every time I remember this special moment.

Here is a video of Zac talking about Andy! https://www.youtube.com/watch?v=k2Nxq0WdrHA

 I have never in a million years imagined this, this not just made Andy checked this off his bucket list but it marked his life forever. He and I will always have this memory of this special day when someone that he admires decided to recognize Andy’s fight and courage.

 Zac Brown Band, if you are reading this I want to say thank you, thank you for being who you are, thank you for showing that you care, thank you for your music, it has truly made an impact in our family. Thank you for your song "bittersweet" I can almost swear that was written for Andy and I. Our love story, our fight, our feelings here in one song. Thank you for being a part of our family memories and especially thank you for helping a wonderful young man to check one of his bucket lists items off!

You can listen to Bittersweet here, think about Andy and grab a tissue!https://www.youtube.com/watch?v=PPvyfLtlI-A

To the Zamily, you have no idea what this trip meant to us, you have no idea what you did, thanks to you Andy was able to check off other things of his bucket list ( I will write about it soon) not just the concert, you are a big group of loving, caring amazing people, we will be forever grateful and we will never be able to thank you enough. And like if you haven't done enough you guys are still helping us in getting us to Boston so Andy can check off one more thing of his list, a Red Sox game! You guys rock!

If you want to help Andy get to Boston go here http://www.youcaring.com/andy-moss-373454 or contact me leylamoss@gmail.com :) he also wants to meet David Beckham so we are still working on that :)

Tbird. That big heart of yours is amazing, we are so blessed to have met you, and your sweet words meant a lot and your actions even more! It’s crazy how Heavenly Father puts the right people at the right time in our lives. I don't believe in coincidences I know he moves everything and he knew that you were going to bless our family! We already love you!


From now on I consider myself a HUGE fan of Zac Brown Band. From now on I would love to be a part of this amazing Zamily. Please keep Andy on your prayers he will be having more chemo tomorrow ... Love!!! Leyla #teamAndy #sunsetsforAndy

You can listen to "No Hurry" , Andy's favorite song here:https://www.youtube.com/watch?v=nHA-UHv2dWs

_______________________________________________________________________________



CANCER ES MAS FACIL CON ZAC BROWN BAND!

Después de dos años luchando contra el cáncer de células germinales del mediastino, Andy, 31 años de edad, ha sido admitido en varias ocasiones en diferentes hospitales, ha tenido muchas quimioterapia y trasplantes y hemos pasado días y noches en un cuarto de hospital.Recuerdo que un día en específico, unA de las más Fuertes quimios que han tenido, cuando los medicamentos para el dolor no eran suficientes, cuando los medicamentos para la náuseas no estaban haciendo nada, me acuerdo que el me dijo por favor ayudame, has algo por favor ayudame, en eso se me ocurrio decirle, que tal musica? y el me dijo si! ponme a ZAc Brown Band. Y asi lo hice, inmediatamente su cara se calmo, inmediatamente se tranquilizo.



Zac Brown Band ha tenidomucho impacto en nuestras vidas, su musica ha formado parte de los momentos mas dificiles de ella pero asi como tambien ha sido parte de los momentos mas felices. Uno de los recuerdos que tengo de Zac Brown Band es yo manejando en mi carro con Andy a un lado, con la musica a todo volumen y nusestros hijos cantando atras casi gritando la musica de Zac Brown Band, especialmente la cancion favorita de Andy, "no hurry"



Despues de habernos enterado que el cancer de Andy habia regresado por tercera vez en dos anos pero esta vez etapa 4 regandose a sus huesos y espina, un dia decidi que teniamos que hacer una lista de sus ultimos deseos, le pregunte, que te gustaria hacer? dime una de las cosas que quisieras hacer con todo tu Corazon versa que trataremos lo possible de cumplirlas... una de esas cosas fue ir a un conierto de Zac Brown, jamas nos imaginamos lo que iba a suceder.



Para los que no estan familiarizados con este grupo, es un grupo de musica country y han Ganado mas de tres grammys! osea son super famosos aca asi es que la verdad jamas me imagine que iba a suceder lo siguiente.



La manager del grupo nos contacto, el club de fans de ZAc Brown que se llama Zamily nos pago los boletos de avion, los boletos de entrada, otra persona nos regalo los boletos para una convivencia que el grupo tendria con sus fans, nos pagaron comidas, renta de carro, todo!

cuando llegamos a la convivencia la manager nos recibio como reyes, nos asigno a un tipo de seguridad y en cuanto llego el grupo, el lider del grupo se acerco a Andy, estuvo platicando con el, y Andy le dijo lo mcuho que significaba su musica para el.



Ahi no dejaban tomar fotos asi es que al final de la convivencia nos llevaron para atras del evento y ZAc llego a tomarse fotos con Andy y a platicar un poco con el.



DEspues de esto uno de los ingegrantes del grupo hablo con andy y le pregunto que cancion queria escuchar y Andy le dijo "no hurry" el muchacho le contesto, mmm no la vamos a tocar hoy pero dejame hablar con ZAc a ver que podemos hacer.



Los fans nos trataron de maravilla, el concierto fue casi casi para Andy, Zac se encargo de venir a saludar a andy, le regalaron durante el concierto el pandero, la espiga de la guitarra, las baquetas, le firmaron una playera que la manager nos dio durante el concierto, y una de las cosas mas especiales fue que ZAc le regalo una rosa blanca a cada una de las muchachas que estaban cerca del scenario pero a mi me dio 4! fue como alguien famoso diciendo, gracias Leyla por lo que haces por tu esposo, de verdad significo mucho para mi.



Antes de que terminara el concierto Zac dijo, esta cancion va para Andy Moss! y canto "no hurry" al terminar la cancion camino hacia a Andy para darle la mano al mismo tiempo que ZAc hablaba de ANdy, dijo Andy ha estado luchando contra este cancer y los fans de la banda lograron que estuviera aqui con nosotros, Andy te queremos! no se imaginan como llore y que tan especial fue ese momento para nosotros, llore y segui llorando pues miles y miles de personas gritaban se paraban y aplaudian a Andy



Zac no se imagina lo feliz que hizo a mi esposo, no creo en las coincidencias, se que todo es obra de Nuestro Padre Celestial moviendo todo para hacer feliz a Andy

:)



Pueden escuchar la cancion favorite de Andy no hurry aquihttps://www.youtube.com/watch?v=nHA-UHv2dWs



O la otra cancion que me hace llorar que juro que casi casi se la escribieron a Andy aquihttps://www.youtube.com/watch?v=PPvyfLtlI-A