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.comI 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 cardsLoveLeyla
