A heart breaking experience I will never forget.... Not intended for children to read

This is an experience I will never forget and an experience even though it was heartbreaking, is something I want to blog to have in as part of my journal and our experience. This post is not intended for children to read and or anyone else who might have nightmares or who does not want to know the risks of having a bone marrow transplant done.  So I am warning you that you may not want to read on. I chose to do this as a separate post so that it is not included or take away from a fun filled day with pictures that some of our family, cousins, young friends would want to see.

Yesterday as Ariauna and I were sitting downstairs at the hospital waiting for the shuttle to come, Ariauna said to me "Look Mom, it is Amanda's mom". I looked over and saw the dear mom of a sweet girl we met shortly after we got to Minnesota. We were just at the beginning of our work up week when we met this cute girl named Amanda. I think I have mentioned her previously on the blog. She is a 23 year old with Fanconi Anemia. If I remember right she was diagnosed very early, close to birth with the disease. She was born without either one of her thumbs. She was very small and thin. Currently she was having other health issues and was having dialysis too. We saw them numerous times during our outpatient work up week and several other times in and out of the hospital. She was a cute girl and Ariauna was aware of her, her situation and that she had the same disease. As soon as I saw her mom I had this horrible feeling that something was wrong, as her mom had a cart of personal items that she was outside loading in a car. I knew this sweet Amanda had not been admitted for very long and that there was no way she could possibly be getting released already. I told Ariauna to stay there with the suitcases so I could go talk to her mom. Ari said, no I want to come with you and I  nicely asked her to please stay and watch the suitcases. I went out and approached her mom and asked her how she was doing. She turned and looked at me and said "Natalie, you won't believe what happened, Amanda passed away last night". She started sobbing and I started sobbing with her. This has been my biggest fear from the very beginning when we first met with the doctors and found out what the benefits and the risks of doing a transplant are. We hugged and just held each other tight. I can not even tell you the emotions I felt at that moment. Heartbroken for her family, scared to death about the journey we are starting, and sick to my stomach about what can and can't happen with transplant. We held each other for what seems like forever. I felt so close to this family and my heart felt as if it had stopped beating itself. I told her I knew I didn't have words to say that could comfort her or make this all better. I just told her how sorry I was and that my heart was broken. We had a good little visit. She introduced me to her husband who I had not met because he did not come into town until the transplant. We talked about their other daughter who was the donor. Right now they are not sure if it even had anything to do with the transplant or if it had something to do with her other health issues. Amanda was only +5 days post transplant. I asked her if the sister was still here and she said no that she had gone home 3 days after transplant. She told me that right before the sister had left she leaned down to give Amanda a hug and Amanda said to her sister "I am in so much pain, and now you are in pain too. We never should have done this." Her mom went on to tell me that her dad had just flown home early Sunday morning to get back to work and then this happened on Monday. Her mom told me they were just there to get the rest of her belongings and said she was doing rather well until the hospital gave her this and she handed me a beautiful heart shape made out of clay with Amanda's hand print in it. It was beautiful, and I just looked at it with tears streaming down my face. There was her beautiful hand print with just her four fingers as she had no thumbs.  I asked her what now and she said Amanda always said she wanted to be cremated so they will do that here in MN and then ship her remains to them. Amanda's birthday is in a couple of weeks and she loved the beach and the sun so the family will all get together for her birthday at the beach and they will put her ashes there. We visited a bit longer and then I told them I would let them go. They were going to finish things up here in MN and then head home tomorrow. She made me promise that I would not tell Ariauna about this. That is all Ariauna needs right now is to be worrying about that. I gave her another hug, we exchanged phone numbers and I let them go. I went back in to the hospital and Ariauna asked me what was going on with her mom and I just told her that we had not seen each other in awhile so her mom was just giving me a big hug. Ariauna has seen me cry numerous times and a lot of the time it is because I am missing home and my family at home. I am not sure if she saw me and Amanda's mom crying or not, but she did not ask any other questions than that, and I am grateful. I am so grateful for the spirit and for the feeling I had that I needed to go say hello to her. Even though it was devastating and so hard to hear, especially right now as we are just starting the scariest part of our journey, I truly feel like that part of my day was meant to be and that I was in the right place at the right time. I don't know if it was more for me, or so that I could be there to love and care for her mom but I am so grateful I listened to the spirit and went out and saw them. I hope and pray her family will be comforted during this difficult time. We were blessed to have met Amanda and her family. She was a beautiful woman.  After that experience I was sick the rest of the day as you can imagine. It was all I could do to eat, focus on things that were going on, and to sleep. I had nightmares all night last night about the journey we are about to experience. I cried off and on all night long.  I talked to Jerry about it and my fears and concerns, I talked to my parents about it, and I prayed my heart out. I am more scared now than I have ever been before. I wish I was a little child, innocent, not knowing everything that I know. I wish I was as strong and brave as Ariauna. She is going in to this so willingly and so courageous. I know she is not aware of the scariest parts of this and I am grateful for that. I got some good advice from a friend that If I was really concerned about it to talk to the doctors and staff again before going forward. So I decided I needed to do just that. So early this morning at the doctors came around to do rounds, I stepped out in the hall with them. They did what they do during rounds, see today's real post about what happened today. After they went over all of Ariauna's stuff, they asked me if I had any questions. I told them, that I knew Amanda and was aware of what had happened a few nights ago. I started to cry and told them that this is the scariest thing I have ever had to do in my life. I told them that I was scared now, if this is what I should be doing, or if I am making a big mistake. I know if something tragic was to happen to Ariauna I would always wonder if doing the bone marrow was the right thing or not. Even though I know that right now we do not have a choice, I know that I am the one signing all the papers telling them to go forward with this. I know that this  Bone Marrow Transplant is the only chance of giving her a longer life. That is the only reason I am here right now is to give my daughter the best life that I can. But I needed more reassurance. I needed to hear it from the doctors again. I had a great little chat with the doctors and they definitely did and said exactly what I needed to hear to move forward. They reminded me again that bringing a healthy child in to transplant gives them so much more chances of having a good success than bringing a sick child or a child with other health issues. They reassured me that if it was their child they would be doing exactly what I am doing. They reminded me that they do not have a crystal ball and can not say what exactly will happen with Ariauna, but that they do know that Ariauna is very healthy and happy right now, and even though it is hard to bring a child in to transplant healthy and happy, knowing they are going to get very sick before they get better, it is the best time and opportunity to do a transplant. Shortly after that visit with the doctors, I saw a nurse in the hall talking to a Father and his daughter. I figured by the conversation I heard that they were previous patients who were just here to visit some of the nurses they had. Not long after that, our nurse came in to our room and it was the nurse that had been out in the hall. She told me that she had heard I was having a hard time this morning, and that had she known my concerns she would have introduced me to the girl and her father as she was another Fanconi Anemia patient who is 5 years post transplant. It was definitely comforting to hear. I felt a lot better today after talking with the doctors. I am still very nervous and scared, but am trying my best to put my faith in the Lord and knowing that he will help me make it through this. I know we have a lot of people praying for us and Ariauna and I have received some beautiful blessings. Some right before we left home as well as others here in Minnesota. I have faith in my Heavenly Father that he will take care of me and Ariauna and help us to make it through this journey.