Hello everyone,

Its Misty, Alan’s wife.  I have been trying to figure out the username and password for a week so that I could update  you all on our sweet Alan.  I finally figured it out today.  Wouldn’t you know it, his password was the name of one of his favorite superheroes.  That is so my Alan :-).  I don’t have a lot of time to post, so please forgive me for just copying and pasting what I had posted on my Facebook page over the past 10 days.  Alan has been moved from palliative care to inpatient hospice care.  I will try and update this blog and my FB page as much as possible.  Thank you all for your continued love, prayers and support.

Love,

Misty

Posts below:

May 11. 2010

Hello my friends,

I would like to thank each of you for your calls, emails, posts, continued prayers and support. I am so sorry that Alan and I have been so out of touch. We simply haven’t had a spare moment to update you all. I also apologize for this mass email approach, but it the best I could do with such limited time. As you all know from Alan’s last blog entry, we received some pretty devastating news on our last visit to UNC and to our oncologist here in Mooresville. For those of you who don’t know, Alan and I were told that his cancer had progressed significantly and that his treatments were no longer working. Alan was given the choice to “do nothing” and focus on palliative care or to continue on with the original chemo that he had in hopes that it might make a difference. The doctors were very clear that if he opted to do the chemo again, that he might not recover. Those of you who know my amazing hubby know that Alan is a fighter and so I fully supported him in his decision to continue the chemo in hopes it would work.

Alan had his chemo last Tuesday and his health has taken a significant turn for the worse. This is why we haven’t been able to update. We are focusing on trying to keep Alan hydrated and comfortable and praying that his health will improve. Alan is in a significant amount of pain, so we called in a palliative care nurse today that is helping us to better manage the pain. She was wonderful and we are so thankful for her. Please pray that we can get Alan’s pain under control. Alan is still on the schedule for chemo again next Tuesday, but if his health does not improve, he will not be a candidate.

If you have been calling Alan’s cell phone or emailing him, he hasn’t received your calls. His phone is dead and he isn’t up to checking email. He is sleeping most of the day. When he is awake, he isn’t lucid a great deal of the time. The doctors say that this is most likely from toxins building up in his bloodstream :-(.

Many of you have called and asked to visit. We really appreciate that! However, Alan has requested that he just have time with the immediate family now as he is not really up for visitors. He loves you all, but just doesn’t have the energy for visits at this time.

Over the past two weeks I have consulted numerous child psychologists, play therapists and pediatricians for guidance on how to best communicate the news to our children. Per the child psychologist’s suggestion, Alan’s parents will be going home today to give us a few days alone as a family. Alan and I have planned to use this time to tell the kids that “Daddy’s medicine is not working” and wait for them to ask questions over a few days and answer them tactfully, but honestly. Alan very much wants to be a part of this conversation, so please pray that he will have the strength to do this. We respectfully ask that no comments be made to or in front of the children regarding Alan’s illness. We want to have the opportunity to try and answer all of their questions first. The children are both showing signs of emotional stress in different ways. As much as we try to keep them sheltered, they are still picking up on things at home. Children sense everything!

My heart is broken but my faith is still strong. Please pray for God to give our entire family to continue on this journey. I am so thankful that God has placed each one of you in my life for a reason. You all may never know how much of a difference you have made and continue to make in my life. I love you all and I will try to keep you posted when I can grab a spare moment. Please remember, if I do not pick up your call it isn’t because I don’t want to talk to you. It just means I have little ears with me at the time and I simply can’t because once I start crying I can’t stop. Some of you have witnessed this first hand. So, I try to keep it all together until night fall and then I am too tired to talk. I love you all!!!

xo

Misty

May 12, 2010
Hi everyone,

Once again, thank you all for your calls, emails and prayers! Well, today was the day. The day that we vowed to tell the kids about the changes in Alan’s prognosis. When I awoke this morning, I literally felt like I was going to throw up. I felt like my nerves were going to consume me. That didn’t last for long because the kids got up and hit the ground running as usual :-). So, I had no time to really think about it. Alan had a much better day in terms of pain management, however, he his mental clarity was much worse. We had hoped that Alan would be able to talk with Aiden directly about his illness, but it just wasn’t possible. So, while Addyson napped today I sat Aiden down for “the talk”. One thing that I have learned from all this is that you cannot keep things from your kids. I asked Aiden to come sit down with because I had something “important to talk with him about”. He seemed very nervous, like he knew what was coming. He listened intently while I recapped what we had originally told him about Alan’s illness. I asked if he reiterated that the illness is called “cancer”. I told him about all the different medicines that Daddy has taken and how some of them worked for a while and then they stopped working and that now there aren’t any more medicines to effectively treat Alan’s illness. I explained to Aiden that “our bodies are like a flower garden and that the flowers represent the healthy cells in our body.” I told him that cancer cells are like weeds that grow in the garden and that when they get out of control it makes Daddy very sick. I explained that the chemo’s job was to try and kill the weeds, but that Daddy’s weeds were too strong for the chemo. Aiden really liked this analogy and being my little problem solver he drew out his own solution on paper. It broke my heart. He said, “I have an idea Mommy, the weeds could just stay but move away from the flowers so they don’t kill them and then Daddy would be ok.” :-(. I explained to him that we are not in control of where the weeds grow. He asked me “Why does Daddy have to get cancer”. I told him I don’t know, but that lots of people get cancer and that some cancers are easier to treat than others. He asked me “Is Daddy going to get better?” I said, I hope so Aiden, but we just don’t know. I told him that some people get better from cancer and other people don’t . I explained that sometimes things happen to us in our lives that we don’t expect or want to happen, but that we just have to take what is given to us and work through it. I assured him that cancer is not contagious and the cannot catch it from Daddy. This seemed to relieve a lot of fears that I did not even know he had. I told him that we would be honest with him with any questions he had today or in the future. I asked him if he had any questions. He had a lot of questions! He immediately asked, “Why is Daddy so skinny?” and “Why isn’t Daddy eating a lot?” I explained that the cancer meds and cancer itself often makes a person lose weight. I explained that Alan’s tumors are on an organ called his liver and that just like when he hits his head on something it swells and gets irritated. I explained that Alan’s liver is swollen and irritated and that it is “smooshing” Daddy’s tummy and making it smaller. Aiden had me repeat that explanation twice, so I ended up getting a leftover plastic easter egg to demonstrate Alan’s stomach and showing him the entire egg and then squeezing it in the middle to show him how it would allow for less food. This seemed to answer his question. I made him pinky promise ( a VERY big deal in our house) that he would come to Mommy or Daddy with ANY questions or concerns that he might have. He promised. Then, Addyson woke up and Aiden immediately switched to protective big brother mode and started explaining to Addyson what was going on with Daddy. It was the sweetest thing I have ever seen. He made Addyson pinkie promise that she too would ask any questions she might have in the future.

So, both kiddos went to bed fine and we will see how things shake out over the next few days. I know there are going to be many more questions. I am so thankful that God gave me the words and the strength to get through the conversation without crying. I am reading a WONDERFUL book entitled “When a Parent Has Cancer”. I picked it up from the library today and was literally skimming it moments before getting Aiden off the bus and praying that God would show me what to say and do. I immediately flipped to the exact page in the book that discussed talking to you children when the prognosis is not good. The first line was so powerful. “Pity is like poison” to children. At first glance I thought this author must be crazy, but then I read on and she explained that when we pity children and excuse their behavior in times of emotional stress, we are teaching them that when they face adversity in life the should just throw up their hands and say ” I cannot be successful due to the cards life has dealt me”. If we take the opposite approach, we can empower the child to overcome adversity, be flexible, compassionate and patient. What an awesome approach! We are still not going to discuss the illness in front of the children unless they bring it up. The counselors say we should shelter the children while at the same time being honest. So, please continue to be discreet in discussing Alan’s illness if the kiddos are with us.

Again, Alan and I are so humbled by your love and support. I had complete stranger that lives in my neighborhood come by tonight and offer to clean my house once a week and do my laundry!!!! Can you believe that?!? This is GOD’s love and mercy at it’s finest.

Ok folks, am beat and it is 11PM. I am heading to bed. I typed this in a rush and had no time to proof-read, so please excuse typos and grammatical errors 🙂

Much love to you all….
xo

May 16, 2010
Hello friends,

Once again, thank you all for the outpouring of love and support for our family. I wanted to give you all a quick update on what has been going on for the past four days.

Unfortunately, Alan isn’t any better. His health has deteriorated greatly over the last few days, particularly his mental state. Today has been the most difficult day of my life :-(. I don’t use those words lightly. I have been through many hardships in my life, but nothing compared to this. Over the past few days, Alan has had many episodes of extreme dementia caused by the build of ammonia in his system due to his liver failure. Each time Alan experiences one of these episodes that can last for minutes or hours, it is so heartbreaking. We do everything we can to keep him calm, because some of the episodes can be very scary for him as well. Alan has been getting up all throughout the night with hallucinations and pain. Last night, he slept all through the night and I was so thankful. I thought he would wake up well rested and doing much better. Instead, I heard words this morning that I never wanted to hear or ever want to hear again. I said “Good morning baby, how was your night?” He said, with a scared look on his face, “Who are you?” and “Where is our house?” I wanted to fall to pieces right then and there, but I calmly reassured him that I was his wife and that we were in our house and that I loved him very much.

Alan’s parents came in to sit with Alan while I got the kids ready for church. As I was getting Aiden dressed for church, he said “Mommy, what happens if Daddy doesn’t get better?” . I tried to calmly tell Aiden that if the doctors could not make Daddy better here on Earth, that Jesus would give Daddy a new body and make him better in heaven. We also discussed that there might come a point when Daddy might need to go to a place called a Hospice House where nurses and doctors could help Daddy get the hydration he needs and make him feel more comfortable. This was the first time I could not hold back the tears. A single teardrop fell down my face and Aiden looked panicked so I quickly got it together and we continued getting dressed. Next question (5 minutes later). “Mommy, do kids get cancer?” The book I am reading is right on as it mentioned that I would get exactly these questions after giving “the talk”. I answered the question honestly, but reassuringly. I said “Yes, some kids do unfortunately get cancer, but most grow up healthy and that a lot of kids who get cancer have very treatable forms of cancer and some can even be cured.”

I was at my breaking point by the time we made it to church. Now, here is where God show up.. big time! I walked the kids in to their individual classrooms and as I was checking Aiden in to his classroom, the lady taking down the names paused when I told her Aiden’s name. I didn’t think much of it and was walking away. Then, another lady who is a big part of the children’s church program stopped me and said I just want to show you Aiden’s new classroom that will be open in a couple of weeks. As we walked and she was talking about Aiden’s new classroom, I couldn’t even focus on what she was saying. All I could think about was the fact that my husband is so sick he didn’t know who I was and the fact that my son was so worried about his Dad. My eyes started to well up with tears and then I LOST IT! The lady who was with me told me that she and all of the children’s ministry had lifted our entire family up in prayer just that morning and that they wanted to help in any way they could. I was giving her my contact info, because she needed to get back to work and who should show up? My dear friend Amy… thank you GOD! I did NOT need to be alone at that moment and there was no way I could go into the service in hysterics. Amy and I retreated to the ladies room for a good cry and conversation. Hey, at least we had an abundance of tissue .. well toilet paper.. but hey we are in the south and they are one in the same here.. LOL.

Anyway, I had plans to call the hospice nurse while the kids were in church, so they would not hear the conversation. I wanted to arrange for them to come out and check Alan again. So, Amy and I stepped outside to make the call. I got the answering service and I told them our nurses name (we have not met this nurse yet. .. just the admissions nurse). They said they would have another nurse call me and set up a time to come out. I was very nervous because I just knew they were going to call once church was over and I would have the kids and not be able to talk. Now, check this out. I was walking back into the atrium with my friend Amy feeling quite dismayed and the lady who was checking names at Aiden’s classroom stood up and came over to me. This is the lady who paused when I told her Aiden’s name. She said “Are you Misty Dove, Aiden Dove’s mom?” I said yes and she took my hand and said, I am going to be your husband Alan’s Hospice nurse!!!! Ok, we have around 1500 people per service at our church and 3 services per weekend… what are the chances that I would meet this woman?!?!?! I told her what was going on and she took care of it all on the spot. She called the on-call nurse, delayed the appt. and set up a time to come see us tomorrow morning while the kids are at school. What a blessing!!! Amy and I decided we would just sit outside and watch the service on the television screens because we were so late going in. About that time, the on-call nurse from Hospice called me back and I stepped away to take her call. Then, who should I run into, but our pastor’s wife Carey Madding. I have never really met her personally, because our church is so huge. She looked at me and said “Are you doing ok?” By this point, I had stopped crying, but I guess God just told her to ask me. I burst into tears again, and she ushered me in to a room in the back of the church and we sat down to talk. She told me she had heard about us and that she and our pastor had driven around for a long time trying to find where lived so they could stop over to see us. We had such a nice conversation and she told me of a lady in our church that had lost her husband to cancer a year ago this month. I had not met this lady, so Carey told me to hold on and she found her and introduced us to one another. It was such a blessing to meet this young lady. She is my age and we could relate on so many levels. We had a great conversation, exchanged numbers and then church was over. I picked up the kids and we went to our usual Sunday lunch at the local Mexican restaurant, only today Daddy wasn’t with us. The kids were very well-behaved at lunch and our favorite waiter came to the table and unknowingly asked, “Where is your husband today?” I said, “He is at home” and Aiden said, “He is sick. He has cancer!” The waiter said, “Oh, that is really bad.” So, then Aiden burst into tears and said “What if Daddy dies? ” Then we were all in tears, and I told Aiden that if Daddy died, he would go to heaven and be our guardian angel. We left the restaurant and I suggested that we go to the craft store to get some supplies to make some crafts to let Dad know how much we love him. We found beach pails for $1 at Michael’s and we came of with the idea to call them “Buckets of Love” :-). Aiden and Addy both picked out special items to make for Daddy and place in the buckets and we were on our way. This served as a wonderful distraction for the afternoon. Alan’s cousin and her husband came by for a visit also and brought the kids some goodies and they had a great time. My friend Aly stopped over to bring us a yummy dinner and then it was time for bed and more questions from Aiden. Just as we were wrapping up story time, he said,”Mommy, what if all the parents go to heaven and the kids are left behind?” I said, “Aiden are you worried that if Daddy goes to heaven, Mommy will go too and you will be left here with no one to take care of you.” He started to cry and said “Yes”. I assured him that he would always be taken care of and that God takes care of all of his children. I then shared with him my same fears when I was his age, that my grandparents (who were also my guardians at the time) would die and that no one would be there to take care of me. I explained how God had cared for me over the years even though my grandparents did die. This was actually a tremendous comfort to him. See, God uses bad things in your life for good in the end. After many questions and a lot of reassurance, my little bugs are fast asleep and I am about to do the same. I sat with Alan a bit after dinner and he had some wonderful moments of clarity where he knew exactly who I was and told me how much he loved me :-). Aiden was able to give him his bucket of love and Alan told him how much he loved it (Addy did not feel like working on hers today… she painted her nails and toenails with the paints instead LOL). So, the day is ending well, Alan is resting and was coherent before drifting off to sleep, the nurse comes tomorrow and tomorrow is a new day. Please pray that it is a good one. I am posting some pics from the day on my wall. I am sorry this was so long and jumbled, but again it is late and I just wanted to give you all the scoop, since I can’t get to my calls or emails these days. I love you all! xo

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