May 12, 2013

An all around great weekend. Alicia graduated with her Masters from NAU. It's such an accomplishment and with all she's been through, especially this last year, she did amazing. She was working full time teaching a combo 3rd/4th grade and still had a 3.9 GPA.



May 8, 2013

My last post was alot harder to write then I thought it would be.  I thought that I would be able to give a brief outline of what had gone on with Bee and his illness, but as I wrote, it all came back to me about how I was feeling going through all of that with Alicia.  I cried several times as I wrote it and also the few times I have read it over again.  I cry for Bee and the fact that he was only 31 and had to leave us at such a young age and I cry for Alicia for all she went through and all she is going through now as she misses him each day.

But you know I realized why I was crying so much through the whole ordeal.  It brought back so much of what happened when daddy was in the hospital.  I was having all those feelings for myself and I realized that Alicia was now having them as well.  It became her life.  She would spend just about all her spare time at the hospital, just like myself and all my sisters.  We basically lived there.  And at the end Alicia wouldn't even leave for fear something would happen while she was gone.  I too had that feeling.  I couldn't leave the hospital when dad was there cause he might die and I wouldn't be there to say goodbye, or know he was ok.  When my mom was in the hospital right before she died I went home and then she died.  And thinking about it now, after knowing how things happen, I think my dad sent us home so that we wouldn't be there and have to experience that.  Alicia wouldn't leave and I got it, I knew what she was feeling but then again I didn't want her to have to experience watching someone you love die.   And you know there becomes this big void in your life.  It's in your everyday life, it's in your thoughts, it's in your actions, and it's especially in your heart.  Dad died on Good Friday, and Bee was really sick around that time as well.  It all just seemed to surface again.  It's hard to believe that after all these years that dad has been dead, that I continue to struggle with the fact that he is gone.

Janet called me the actual date that daddy died and said she was thinking about me.  She was especially thinking about Alicia and all that she had just gone through and she knew before I even had to explain it to her how I was struggling so bad with old feelings that I was having.  Have they gotten easier to deal with, yes of course, but it has taken a long time.  But on occasion I feel exactly like I did all those years ago.   And as Jan and I continued to talk about this, we also talked about the fact that she went through all of that with dad and then again with Mike.  It was tough for her and she again had that void in her heart to deal with.

It was tough on Alicia too I know it was, and it still is and will be that way for a while.  I talked to her tonight and told her that everyone is asking me how she is.  I said, everyone wants to know how you are and if you're ok.  She said, just tell everyone to leave me alone.  I know she doesn't mean it, I know she needs her friends and family so much right now, but I also know she doesn't want to be reminded that he's gone and has to live through all of what happened again.   She was so disappointed yesterday cause she went to his grave and all the decorations she had put there were gone.  She had some cute little bee garden sticks and some flowers, and it was all gone.  I think the cemetery might have done a cleaning of the grounds which I know some of them do sometimes, but this is all so new to her so it was something else that made her unhappy.   I'm treading on thin ice when I try to talk to her about him cause I really don't know how much she wants to say or if she even wants to hear what I have to say.  I don't even know if it's something she can or wants to talk about.  I know she'll get there but I can see it in her eyes that she's still so very very sad.

Bee



This is a post that I have tried to write several times.  It's about Alicia's boyfriend Bee.  

Bee surprisingly was diagnosed with Leukemia on December 22, 2011.  It was something that was discovered when he went to Urgent Care cause he couldn't get rid of a cold and Urgent Care sent him to the hospital.  He was admitted on the spot and told about the cancer that was now present in his body.  He was told at the hospital that they had no idea how he was functioning with his blood counts as bad as they were. 
I remember when she called me that night to tell me.  We talked about it and she didn't even know Leukemia was cancer.  I told her that this was very serious and he was going to have a very long road ahead of him.  And she told me, "you know mom, I really like him, I do.  It just sucks that right now he has cancer."

Bee was in the hospital til the end of January, and then in and out of the hospital for months to follow.  He had all sorts of treatments including chemo, radiation and other things that I can't even name.   His mom, who  lived in California, packed up everything and moved here to help take care of Bee.  He would get out of the hospital for a few weeks and then have to go back in for a week of treatments   Then he would get out and not feel well, and be put back in.  It came to the point where he was told that he needed a bone marrow transplant in order to continue his life.  At 30 years old, this was devastating news.  But yet Bee continued to do what he needed to do to prepare for hopefully getting a bone marrow donor.  The news came in early November that they found a match.  At Thanksgiving dinner that his mom and him attended at Mary's house we prayed for the doctors and for Bee so that all would go well and he would be on his way to getting well.  
It was just the week after Thanksgiving that the process was started.  It is a very detailed process.  First Bee was given very high doses of Chemo, then began the process of transferring his blood out and the donors blood in.  It is a very critical time for him to remain well and germ free because during this time he has no immune system and catching any type of virus was very dangerous.  In the bone marrow unit your days are counted daily.  When you make it to a particular number of days it's a good sign, then the next number is even better and so on.  As the days kept counting up it continued to be one good sign after another.  But of course this couldn't go on without complications.  It seemed like every little thing was attracted to Bee.  He ran a fever several times, and this is not good.  He caught Meningitis, which is also not good.  He got discharged from the hospital only to be home and not feel well after a while and have to be readmitted.  It was discovered that he had graft vs host disease.  This is somewhat common in bone marrow transplants, but it's another complication that is not good.  It seemed like he just couldn't catch a break.  

Now all during this time Bee and trips to the hospital became Alicia's life.  It seemed like if she wasn't working or babysitting she was at the hospital.  And the few times he was out of the hospital they were either at his apartment or her apartment watching movies.  There were times they had plans to do things, only to have him be stuck in the hospital or too sick to go out.  But yet she continued to want to be with him.  It didn't matter to her.  Any time I would ask her how her boyfriend was, she would say, "he's not my boyfriend."  And of course I would just be like, ok whatever you say.  Well it came to the point where Bee talked to her about this.  He felt like he was not boyfriend material and that it wasn't fair to her to burden her will all he was going through.  But they both knew and admitted they wanted to be together, it didn't matter he was sick and that they had no desire to date anyone else.  They spend alot of time together.  And alot of their time was just sitting and talking.  I believe they had great communication because so much of what they had was what they talked about.  

Now Bee had not been feeling well again.  He was back in the hospital and they did not really know what was going on.  Through the course of tests etc they discovered that Bee had contracted some sort of fungus. I was at home when Alicia called.   I asked her what was up, and she lost it.  She said that Bee was going in for surgery because of this fungus and the doctor told her it was deadly, he may not survive the surgery.  Kev and I got in the car and went to the hospital.  He was at Scottsdale Shea in the Bone Marrow unit.  When we got there and she saw us, she just fell in our arms and cried.  It was so hard to hold my daughter while she cried with pain.   The surgeon had come out right before we got there and said that they had taken some of the fungus out and would have it tested, but they would be doing another surgery in 2 days.  This fungus was eating at the bones in his face.  They were going in through his nose to scrap this fungus out and catch if from spreading.  The additional surgery was to make sure it still wasn't spreading.  So two days later, another surgery, then another and another and another.  In just over 2 weeks Bee had 7 surgeries on his face.  Each time the doctor said it seemed to be going well, and thought they were catching it.  When they couldn't reach where they needed to go, they cut one side of his nose.  Then a couple surgeries later, they cut the other side.  

Once the surgeries started Kev and I started to go to the hospital regularly to hang out with Alicia and keep her company or even just hang out with Bee if she was busy, so he wouldn't have to be alone.  Because if it wasn't enough that Bee was working on getting healthy, his mom was diagnosed with stage 3 breast cancer and started going through treatments that were really knocking her out.  She got to the point that she was not suppose to go to the hospital because it was not healthy for her.   That was another reason Kev and I went to hang out with him, we didn't want him to be alone.  He was always in alot of pain, but the surgeon kept saying that it was going well.  

Then one morning Alicia got a call at 6:00 in the morning from the hospital and she was told that Bee had fallen, and that he was bleeding very heavily.  So she went to the hospital to learn that when he got up to go to the bathroom, he had been bleeding so bad that he fainted.  He was bleeding alot through his stool.  And this was now a new concern.  Why was he bleeding, where was it coming from?   More scans and tests to check this out.  The scan showed a big mass with all kinds of spider web threads coming from it.  The doctor said that the fungus had now reached his stomach and was going at a rapid pace, he was going to die. They had called Bee's mom and told her she needed to come to the hospital.  Again, Alicia was being told that Bee was going to die.  So so very painful for me to see her hurting so bad.  All Kev and I could do was be there for her and let he know that we loved her.  I prayed, I asked others to pray, his mom had her church praying, we just wanted this all to come to an end and let this young man live.  It was Easter Sunday, and Bee's priest came and gave him last rights.   It had come to that, so as Arcelia (Bee's mom), Alicia, Kev, and another of Bee's friends stood around his bed he was told he was dying and we prayed that God would welcome him and take care of him with open arms.  

Then came Monday, and you know what Bee seemed to be doing better then Sunday.  I text Mary and said Bee is having a good day.  I text Kev and said, Bee is awake, talking and he has lots of visitors so there was no need for him to come to the hospital.  He was having all kinds of visitors cause word had gotten out, he was dying.  I left Monday night knowing all was going well, and he was happy, and talking and joking with his fraternity brothers.  He asked me several times if Kev and I were coming to see him Tuesday and I told him we were and he said ok good, then I'll see you guys tomorrow.    I came home and told Kev the difference I had seen in Bee and he came right out and said what I had been thinking, hopefully this isn't his burst of energy before he dies. 

Kev picked me up from work on Tuesday and we went to the hospital.  Again, Bee was awake, talking alot and enjoying another day with visitors.  Kev looked at me and said he looks so much better today.  We all thought that.  And prior to us getting to the hospital they had done another scan to see if the mass and spider web had spread.  No one, not the nurses, the doctor no one could believe what they saw.  It was gone.  The mass they thought that was the fungus spreading was no longer visible in the scans.  The tech said to Alicia, cause she had gone with him the first time, is this the same guy?  It was the talk of the nurses station, they were all showing the scans, and just talking how it was gone.  We were all sure it was God answering our prayers.  Even Bee sat there and said, "you know 2 days ago they told me I was going to die, and look at me now.  I'm not ready to die, I'm not quitting."  It was awesome!!!!  

But he was still bleeding and they didn't know why or where it was coming from.  He went down for a surgery on Wednesday cause they did a fluid test and thought they found where it was coming from.  They were going to try to do a procedure which was like courtorizing.  They were going to try to stop the bleeding by doing this.  On Thursday, another test showed he was still bleeding.  So now he was going to have another surgery they had to go in and cut him open to find the actual cause of the bleeding and take care of it.   This was a major surgery and because of everything that was involved, when he came out he was admitted to the ICU unit.  He had been in the Bone Marrow unit for months, that was his home and where all the nurses loved him.  Now he was in ICU and it was all business over there.  Now since the morning that Bee fainted, Alicia had been sleeping at the hospital, she wouldn't leave.  The man she loved was dying, and she wasn't going anywhere.  The nurse came and talked to Kev and I and explained that basically, Bee's insides were like a pin cushion and there was nothing they could do to stop the bleeding.  The surgeon told Alicia it was out of his hands.  

We were all saying, how could this happen, he found a bone marrow donor, he fought off fevers, he beat  meningitis,  graft vs host, the fungus in his face, he had miraculously had a clean scan he was supposed to be getting better.  This just couldn't be happening.  Monday & Tuesday were not his burst of energy, they were good days which meant he was going to get better.  But he wasn't.  Alicia & Arcelia were told they were going to take his breathing tube out.  It had been decided that he was a DNR patient.  It was all coming to an end.  It was completely breaking my heart to hold Alicia while she cried and said he's dying mom, he's dying. And there was nothing I could do.  I couldn't fix this and I hurt for my daughter.  

Bee was moved back to the BMT unit where he felt at home.  He was where the nurses knew and loved him.  On Saturday night around 1:00  am one of the nurses called me to tell me Bee had died, and Alicia had asked her to call me.  Kev and I went to the hospital.  It was sad, so very very sad.  My baby girl was still sitting next to Bee holding his hand.  Kev and I just held her while she cried.  

This was Alicia's post on Facebook: 

Exactly 24 hours ago I held the hand of the man I love while he took his last breath. Never did i think when we started our adventure together would it have come to this. He showed me what it truly is to love someone and for that i will always love him. i know he's In a better place watching over me and no longer suffering. Miss you already babe

As of January 2009, I no longer have a job. It's not that I lost it, but after 26 1/2 years of working at the Post Office, I retired. According to everyone I know, I don't do anything all day, so I decided to start a blog. Now I can blog about what I don't do all day. I am married to Kevin, who is the most awesome husband I could ever have. It's because of him, that I do not go to work any more. I love that and I love him for that. Between the 2 of us we have 4 children. Hunter 31, Heather 29, Paul 28 and Alicia 26.

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