Just some history to get everybody up to speed...

I am carrying over my posts from my other journal... there is a lot of history here that may help somebody. I will carry over the rest a bit later. It is now almost 5am and I have not gone to bed yet, so I must do that for a little bit.

08:37 am - Updated journal entries from July 6 to now... October 20, 2005October 20, 2005...Once again, this morning, my family (being the ones who raised me and made me what I am) proved how horrible they are. Ethan was lying to us about taking his medicine. Gary is too trusting...he walked out of the room and Ethan stuck his pill in his pocket and the STRAIGHT FACED lied to us. I dug my hand into his pocket (FIRST TRY) and got the pill. I told Gary when you grow up with people lying all around you, you learn from the best and I know what to expect from everybody else. I have a really hard time trusting ANYBODY ever. (I shouldn't have to doubt my own children but I do). Then I come in here after they all finally leave and I have these little bottles of powder that I was going to take to Gma and two of them are gone. I call Gary really quick so that he can ask Ethan where they are. AGAIN, he flat out lies to us and says he didn't touch them....While I have Gary on the phone I go look in Ethan's room, they are ON HIS BED, UNDER HIS PILLOW (classic ADD and ADHD behavior, hoarding) Gary tells him that I found him and he is STILL LYING and he was caught red-handed. I talked to his Psych about this the other day and all he had to contribute was...."Ethan, you know you shouldn't lie?" I am calling into Gary's work today to talk to the Human Resources lady, a friend Patty, I need to get the list of approved Dr's and see if there is anybody else that we can take Ethan to. With him being so argumentative I KNEW he hadn't taken his last pill at school yesterday, and sure enough he finally told me he hadn't. The other day he came home with Calvin's calculator saying Calvin had left it on the bench. I talked to my friend Jackie (Calvin's mom) and after she talked to her own son we KNOW Ethan took it from Calvin. He has also brought home some things from classmates this week that he said THEY LET him borrow, when I talked to Jackie about it as she is with them in the afternoons, he told a completely different story. Then he goes into this train of thought....I'm no good and nobody every likes me or trusts me (now mind you this kid has lots of friends at school, everybody likes him) I know they say that how your children act is usually pay back for something the parents did.... I have asked all my family what I did, nobody can thing of anything, they all say the same that Colby and I were VERY well behaved. I had very strict parents, we were taught first time obedience. I am not sure how they taught us this as I don't remember EVER being hurt or anything like that, but I remember my brother and I going places all the time with one parent or the other and we BEHAVED. We did not talk or run around, we just somehow KNEW we had to be good. I am not remembering this through a rosy haze or anything, this is how it was. My brother and I were our own best friends. We did not have any other friends. We played only with each other, so when went out, that is what we did. I remember taking quiet things, like I have for the kids, and Colby and I sitting next to our parents and doing whatever it was that we had brought. I have tried to be so careful in all the medicine choices that I have made during the course of my treatment, but there HAS to be some sort of connection to things that I have taken and what is wrong with Ethan. Why else is there nothing wrong with Shayla and Evan? Through all of this thing with the powder, all Ethan had to say was .... Evan did it. I asked Evan and he didn't even know what I was talking about. How sad is it that I have to believe a toddler over an older child? We have done the dietary changes, we have done the parenting skills changes and differed in how we handle punishments. We give him lots of one on one parenting time with both of us, but the MINUTE he is not the whole focus of one of our attention he is uncontrollable. I don't want him on these meds at all but I don't think it is safe right now for him to NOT be on them. I don't talk about my disciplining very much or at all really, but I have no clue where to go from here. When they did his psychological testing, it was brought to our attention that there are "so many" characteristics that contribute to the making of a sociopath (can't figure out the spelling on that one) and at the beginning of the evaluation several years ago, Ethan showed 7 of the contributing factors, enough for it to be a concern. Over the last two years, he now has 3 or 4 more of the factors, despite everything that we are doing. I don't think that I could live with myself if I have or had a hand in raising somebody that could be a detriment to society. I understand there are decidedly very strong reasons that my child is the way he is with much of it hinging on my health and his way to be able to deal and cope with it, but again, I have no idea how to make things better. In most situations where I have dealt with parents with a medical problem, the child's discipline trouble usually resolves with the parent getting better. That is just something that will not happen here. I try to stay as positive as I can, but REALISTICALLY, I know I am getting weaker and sicker, not better. I have never been afraid to die, but of what will happen as a direct result of me dying. What if this is the last thing that sends my child over the end, and then nobody is able to reach him at all? What if because of his grief and all that he feels cheated out of turns him into a burr on society and then nobody is able to even be around him. I know most parents don't have these kinds of fears but this is what I deal with daily. I don't think anybody can tell me what to do as this is not something that most people EVER have to face. I pray and put my full trust in God that HE will somehow work this all out, but the hardest part is trying to be patient and to understand that it for the most part is not in my hands. I have to understand that my hands are being guided by even stronger Hands and that His hands know the outcome and be open to what is He would have me do for Him while I am here.If anybody has gotten this far.... WOW, I don't really expect an answer, I just really needed to get this out. Someday when I am old and gray, I will look back on this and see that I was not insane, just a parent struggling to do what is/was best for my child.---------------------------------------------------------------------------------------------------October 14, 2005...I am home, not for anything that the Drs did, but because I left as I had nobody to help me with Evan. After being there since early this morning, which we were already late, it was too long of a day for him. The Drs decided to do the IVIG instead so now I am in isolation again in the house. I don't even know if the nurse is coming in or I will have to go to appointments with that yucky mask again. I guess I will find out Monday morning. I left AMA as I did not have anybody I could call to come be with me and help with Evan. I have not heard from Gary all day. He knew I had to go to hospital today and knew there was an 80% chance of better that I would be admitted. This morning he did not even say goodbye to or anything. I thought after he took the kids to school he would call and see what was on today's plan and ask if I needed help. NO CALL ALL DAY. I even left my phone on in the hospital so in case he called I could talk to him or at least tell him where I was. I got home and Evan was upset so we called him. He told me.... In a meeting... CLICK....He can see my number, he knows its me, didn't even ask what had happened today or anything. Almost an hour later he calls....just like nothing...why did you call??? All I told him was I spent the whole day at the hospital and left AMA as I had no help with Evan and you can only tell the nurses so much before they realize that your child is THERE TO STAY. I hung up, childish I know, but right now I am not feeling very dignified or grown-up. My body hurts, I look horrible, I have these lovely red and purple rings around my eyes. I am very swollen from all the IV meds they gave me today. My hand hurts where they had the Hep, and they blew three more veins trying to find something big enough to work. Handfuls of my hair are falling out and they tell me I am not even on anything that this is supposed to happen. Payroll was today, I had to call and tell them I wasn't doing it, so nobody got paid....OH WELL. I am at the end of my rope. I am tired of trying to do everything myself. What good is a good paying job for Gary if I am not here to take care of our family. For soo many years I have spared him having to go to appointments and treatments with me, for what, all it does is make me more stressed and feel worse. I was up most of last night with the most horrid bone pain from my left hip down to my ankle. He wakes up and is totally panic stricken because he has no idea what to do. I failed in keeping my pain to myself. Now he sees what I have tried so hard to spare him from. This is my nightmare, I don't want to drag him into in anymore than he needs to be. I know he is my husband and the father of our children, but I cannot stand to see him upset at all. It actually makes me feel worse, so I need to be strong and not let on that anything is bothering me. He always tells me... Talk to me...there is really nothing to say, he can't do anything so better not to say anything.---------------------------------------------------------------------------------------------------October 13, 2005...I lost a post that I had poured my whole heart into. I spent hours typing it here today. For what reason I am not sure as nobody reads this, but it felt good to get it all out. Now I see it is not ever here. This so feels like me, here but not. I am just so tired, physically, emotionally, spiritually but mostly mentally.For the last five weeks my body is getting worse. The Dr's are trying many things. Nothing seems to be working. My CBC this morning was 6 and steadily declining even with numerous transfusions in the past few weeks. My ANC is at 600 when it should be around 6000. Tomorrow will be a turning point either way. I go in at 730am tomorrow to get rechecked. If labs are still falling I will be admitted for several different possibilities. One would be blood products AGAIN. Another would be to start the IVIG process yet again and this would entail me being on house isolation for 4-6 weeks. This means that Gary would have to do everything.....as I am typing this my phone rings.... I have to go get the kids..... see how this won't work???? The worst case senario would be that I will be admitted tomorrow for anywhere from several days to a couple of weeks. The Dr's are talking about a different type of treatment. If this is the case, I will have to wean Evan cold turkey. I know I can do this if it is meant to be. I am just so torn on this. I can't have anymore babies and now they are going to take away the last thing that I can do for my child in the capacity of anything maternal.I have tried to talk to family this week, nobody seems to even think of anything but themselves anymore. If I don't volunteer anything, nothing is asked. Not even how any of us are doing at all. Nobody asks about Gma. I understand C&J are busy with their new babies. Char is busy being a single mom (yeah right, with Con & daddy there to do everything for her) along with Ry, but he isn't helping anything being 5000 miles from his wife and child that he hasn't even spoken to in over a year???? J&E are having their own problems and thinking of divorce. B doesn't call because he is too tired after working all those double shifts at the hospital. I thought Dr's had better hours. I guess that is after your fellowship is done. M&R are too busy doing all their "Church" things to even think about family, so here I am trying totally stressed out again about how and what will be done if I cannot convince the Dr's to let me do some type of treatment at home.This is what they are thinking of doing....http://content.nejm.org/cgi/content/abstract/324/19/1297Nothing new or anything, just not going to be pleasant and could cause some really bad things in trying to fix others. Thank God I have the grant as HMSA won't even think of covering this.I'm sorry, I just feel so alone right now. I am praying so hard for Gary to find Jesus. What happens when I am gone, not only will he suffer but my children will also. They will no longer have any Christian influence as I know he will pull them from that school also. My body is just so tired, I really do not know how much longer I can fight.Oh well, tomorrow is another day and I will fight as much as I can.---------------------------------------------------------------------------------------------------October 4, 2005...Gma may be coming out of her fog.... T has weaned her off of the Geodon COMPLETELY. Tomorrow I will go and see how she is doing and if she is still so mad at me. I don't want to cause a set-back but I do miss seeing her. Setember 19 was to have been her cardiology appointment and we had to cancel that along with notifying her other drs that she is now a shut-in. She gets very upset at the thought of even leaving the house now.If she is off this medication maybe she can regain some of her former self. T was afraid to tell me that she had weaned her off, and I reminded her I am the LAST person that wants her on anymore drugs than necessary.My counts are not doing so hot. I went again yesterday and this time the Neulasta shot penetrated a band of scar tissue in my stomach, spent most of the day yesterday throwing up from the pain. I feel myself sinking back into the mire, and I don't want to be there. I need to stay busy and not think about how sick I am again.THE BEST NEWS I COULD POSSIBLE POST.....I now have two new babies in our family. C&J have had twins, Connor Jacob and Jordan Hailey. Connor was born at 130pm and Jordan at 131pm on Wednesday September 28, 2005. They were born at 35 and 1/2 weeks, but they are doing awesome. Connor was 4lbs 10ozs and 18 inches long. Gary home will have to do this later"And God shall wipe away all tears from their eyes; and there shall be no more death,neither sorrow, nor crying, neither shall there be any more pain: for the former things are passed away" - Revelations 21:4WITH GOD ALL THINGS ARE POSSIBLE!---------------------------------------------------------------------------------------------------September 22, 2005...As today is coming to a close, I have to take a moment and look at all God has accomplished today. I had no idea how I was going to survive the last couple hours of my mom and step-dad's visit. The Lord provided in the fact that a new friend needed me. I have met some wonderful people online and how I have met one more. This wonderful lady really needed a friend and God provided me with the strength to get to her. I wasn't supposed to have needed treatment until tomorrow, but had been feeling increasingly run down throughout the week, when I mentioned to the Dr they told me to come in for another "booster". The plan was to do the airport run then go to the Dr. Well, I did that but by way of a new friend's house first. This wonderful lady needs to be lifted up in prayer as she and her DH are having some awful problems right now. They are a military family and just the fact that I could get on Post to her was an answer to prayer. They guard was not going to let me through, but he sent me to see the pass person. This just so happened to be a lady, and all I told her was.... A pregnant friend called me crying and she needs me... I need to get to her.....The pass was issued no questions asked. We had a nice quiet visit and our boys were able to play a little bit. I came home and updated the worried ladies at GCM and then ran off to Dr. I got my shot and then asked if I was going to need blood again and was pleasantly surprised when they told me no. So I came home and took a short nap cuddled with my baby.We still have the kids to get situated for the night, they should be walking in the door shortly, but then I can relax a bit and thank God for all He has given me and pray for my dear friend tonight that she is in His loving embrace and that He will protect her, her DH, her DS and her DB yet to be born. He is the master planner and only He knows what is in store for us, so I pray that she will have a peace that He is control and He will see her through these troubled times. If she is so lead my house is open to her and her DS if they should need it also.Off to figure out what to feed the monkies. ---------------------------------------------------------------------------------------------------September 19, 2005...My stationary is mocking me today. (on my email where I first typed this) I just got off the phone with a dear friend. Her husband has Lymphoma and has been fighting this for close to 3 years now. When he was diagnosed it was staged at 4 as it was above and below the diaphragm. He initial COMPLAINT over 3 years ago was his tonsils and his adenoids. These were not taken out till a year and a half AFTER he had already been diagnosed with Non-Hodgkin's Lymphoma. They have also found some blood clots and these are causing problems.My friend, Nani, is just beside herself, they have three children, Alika is in 8th grade, Nainoa is in 6th and Kala'i is 4 yrs old, not in school yet. They both have a great deal of family, but neither side is understanding too much of what is going on. They have an appointment this week with the funeral director. And I have given Nani our lawyers name and number to get things taken care of. That is how eminent death is. The lymphoma has now spread to his liver. The dr has told them that if this last chemo, that he started today (it's blue) she couldn't remember the name, doesn't work death will be short coming.Just please pray for this family. This is a wonderful family and she was my life saver when I was pregnant with Shayla, she watched Ethan for me everyday so that I could rest. She watched both Shayla and Ethan when I had to fly to California for my grandpa's funeral and she is my emergency contact for my children when they are at school. Gary is taking this very hard also, so please pray that he will be okay when Bill goes HOME.We also went to go visit Gma yesterday and she was VERY quiet. She has a livid black eye, a huge hand mark on her arm, as T tried to catch her as she fell, and she really messed up her knee. She is also fighting a virus and just overall wasn't feeling very well, even more so than normal. T has also mentioned to her that she had a Dr's appt today that she needed to go to and that set her off on a tangent after we left. I have been on the phone all day with her three Drs trying to find out the protocol for her now being a "shut-in". One Dr was fine with it and said we only need to do medical things that arise a emergencies now. Her other Dr was ADAMANT about her being re-hospitalized in the psych hospital and I won't do that. I no longer believe that she ever really needed to be in there. We also have reason to believe that she was sexual molested while she was there in June. Whether it really did happen, SHE WILL NOT BE GOING BACK THERE. I have not heard back from the last Dr and he will play the biggest part in all this, as he would have to be the one to monitor any care that she does get, even if it is only emergency care at this time.I am on my way to go pick the kids up from school as Ethan has a psychiatry appointment this afternoon. Either meds need to be changed or adjusted or something. We are back to the rages and the meltdowns. I cannot physically keep up with much more so something needs to change with him.Please pray for all this. I have family here from CA for a few days and my meds won't happen until this Friday, so I hope I can hold up till then. I do not look forward to getting another shot in my stomach, but I guess I have to get used to this. It will be a once weekly thing for the foreseeable future.We are watching several hurricanes, so NOW would NOT BE A GOOD TIME.....GO AWAY hurricane Jova, Kenneth and Lidia!!!---------------------------------------------------------------------------------------------------September 12, 2005...I guess I won't be laying down anytime soon, so I will post here. I have just spent the last 2.5 hours at the hospital and with the two Drs. Cho and Yang. Labs came back and do not look good at all. Track your blood counts against normal ranges Normal Ranges - Female White Blood Cells (WBC) 5,000-10,000/mm3Neutrophils (ANC) 2,000/mm3 and aboveRed Blood Cells (RBC) 4.1-5.1Hemoglobin (Hb) 12-16 g/dLHematocrit (Hct) 37%-47%Platelets (Plt) 150,000-400,000/mm3 mm = millimeters g/dL = grams per deciliter My labs were all way off, so off to hospital we, Lilman and I went. Almost 3 hours later, after blood test, and life giving blood received, I could go home. I got a shot in my stomach of Neulasta, used to be called Neupogen. They are now calling it anemia of chronic disease, in English, my body is getting to tired to do the day to day things it needs to. I am not really all that surprised as I know my body very well and have been telling anybody that would listen something still wasn't right. The low white blood cell count is called neutropenia and the bacteremia infection is still here and raging. Blood several months ago showed it was almost non-existent, guess there is a disagreement now in who saw or read what results. There is talk of another bone marrow aspiration. I really don't want to do this again. I know ultimately it is not a matter of what I want but of what I need to do for my babies. Evan started crying today when he saw the blood. It was much easier when he was younger and he would just play in his stroller or go with the nurses for a little bit. Now he is starting to understand so much more. This is NOT what a 2.5 year old should have to learn about. I don't have to go back into isolation, but I need to start taking more precautions to increased risk of infection. I cannot say that this time it doesn't feel different. I have done everything that "they" want me to up to this point. I am just so very tired. I don't think that I can even begin to express the tiredness I feel. Its not a sleep tired, but I do feel that I could go to sleep and sleep for ages if allowed. With the Neulasta as with the Neupogen when I received that I already have a fever and bone pain. I did get a morphine shot, but that means that I will have the itchies for forever. I did not want to start this all over again. I have never asked to be cured, but I would REALLY like a new body at this point. At least the insides. I can deal with the outsides if I could get the insides to work correctly.Sorry computer is spinning so I am going to go lay down for now.---------------------------------------------------------------------------------------------------September 5, 2005...Today is one of my bestest friend's 31st birthday. I wish her only the best as this has been a year of tremendous growth for her. It seem's at times it was just yesterday that we met when we were 14, and here is it 17 years later and we still talk on an almost daily basis even with her living clear across the country now.I have also had some enlightenment today.....A child's journal I have been following....A lady called to ask if she could visit a virtual stranger, it had been layed upon her heart to pray for him...During her visit, this lady told us that there must be something very special and good in Jacob that evil is having to work so hard to try and suppress. She went on to say that Jacob is like a bright light shining with goodness and God's love and because of this powerful "goodness" in him, something evil is trying to get rid of him (through the cancer) and turn out that bright light. Evil is threatened by Jacob and is trying hard to change him - or take him away. What an interesting comment! So many times people question how God could let this happen - but I don't think He does! Cancer is wicked and can only come from an evil force! It also got me thinking about all the wonderful kids we have gotten to know during this journey. Every child we've ever met with cancer has been "special." They have all had that special bright light of goodness! And I think God saves all these children from evil - whether it be on earth or in Heaven. And what I've noticed is that these kids never, ever lose that shining light of goodness. I look at Baby Allie and Paige and Ryan and realize that even though they are physically not with us anymore here on earth - their light is continuing to shine - which is proof that cancer or evil never wins!Yes, this lady that so graciously came to pray for Jacob really got me thinking! And when she left she told us to remember that "God is infinitely good" and He wants us to turn to Him in our times of suffering - not turn against Him. How true that is! What an amazing lady - definitely another angel sent to us to guide us through these tough times! I am in awe!!!! Some quotes I came across today...."A child of God will never face a circumstance that exceeds His grace. When we have no resources of our own, His resources have not begun to be depleted. When we are weak - He is strong.""We can not change yesterday. We can only make the most of today and look with hope towards tomorrow."----------------------------------------------------------------------------------------------------September 2, 2005...This past eight days have been something I will NEVER forget. Gary had to have an emergency Appendectomy on Friday August 26, 2005. However, it was only perferated and did not rupture. We had small complications as his bowels shut down, paralytic ileum. He was finally released on Tuesday. Today is Friday and it has been a long week with him home. He is constantly trying to do way too much. We went back to the Dr today to get the stiches out of both his Lipoma on his back and the staples out of his stomach. He will be home for one more week if I can keep him home.We have rescued a little baby mynah bird from the yard. I have named him Mijo. I hand feed him and he is doing awesome.Dr Cho's office has been calling all week and I have been avoiding him. I have not heard from him since April, I do not expect it to be good news at all. Dr. Stahl sent my blood results to him about the blood infection, so I Don't even want to know. Let me get Gary on his feet again and then I will deal with it. I have upped my Grapeseed and GSE, and all my other supplements. I did however have to go back to Dr. S today, as I have now somehow developed a clot in my middle finger, my finger is extremely sore and turning color. I have been put on meds to break the clots and bring down swelling.Gma is going downhill VERY quickly, I don't even know what to say about that at this point. I did talk to a Rabbi the other day. A really nice man by the name of Daniel Jushuran. He will help me when she passes, either to return her body to California or to have her buried here.Ethan did very well on his spelling test again today. 100% last week and 80% today. This is such a huge improvement over the past couple of weeks.Ok, need to go for now, kids need me. ----------------------------------------------------------------------------------------------------August 23, 2005...Don't even know where to start....Broke two bones in my hand and hairline fractured two more in my foot. Broke two bones in my hand and hairline fracture two more in my foot. I broke the "fifth" bone, this is on the outside on my hand leading to wrist and pinkie. I also broke the metacarpal next to it running lengthwise. They also took xray of my foot, hairline fracture of the calcaneus and talus bone in the top of my foot. Because it was a state holiday they couldn't get ahold of my Dr, and I didn't want to wait there all day, they told me I am on my own for pain meds. They pressure wrapped my hand, and foot. They couldn't cast my hand because my bracelets can come off. I have to unwrap for showers, but can't use hand. this is my left and I am left handed. Keep foot up and don't put too much weight on it. can't carry lilman. Btw, had to take lilman with me because Gary didn't believe me it was broken. Went back to the Dr yesterday and there is an infection in the bone in my hand. Got a pretty nasty Rocephin shot in my behind, that's why at 240am I am sitting here typing, it hurts too bad to sleep. I also got put on Levaquin to try and clear up the infection. It is one of two things, the bacteremia is still here after over a year of battling it, or the cancer is spreading to my bones. They want to run more tests in a few days after the medicine has had a chance to do something.The kids have been back to school for 3 weeks now, and Ethan is having massive trouble with Spelling. I called his teacher at home last night and she is going to try and figure out a way to help him. He also got glasses last week, but is doing ok with them. Shayla is loving kindergarten and is doing great, homework is a breeze for her, no struggles there like with Ethan. Evan hates the kids being gone all day he is so excited to see them in the afternoon.Kola's foot is doing soooo much better, I think we are in the clear. She will always be separated from the Koki now. Gary is looking for a 60 gallon tank for them that he can build a divider in.Gma is in bad shape. She is fixated on hating me now. She is convinced I bilked her out of all her money without her permission. She doesn't remember going and setting anything up with the lawyer and me at all. We went to go see her on Sunday and she didn't talk to us at all, she pushed Evan away and she told us to leave. Terry talked to her and she lied to Terry and said we told her we had to go somewhere, but Terry was right outside and she heard her. I asked Terry straight out how long she thought Gma had, she said MAYBE 8 months. Her anger and hatred are eating her up. We think she is having small heart attacks almost daily now. We also have reason to believe that she was sexually molested in the psych ward of the hospital.With this bone infection I scared all the Dr and myself yesterday...FEVER at 107.4 !!!! 2000mg of motrin and a cool shower and ice packs later I have gotten it down to 104 something and it seems to be staying there for now. ----------------------------------------------------------------------------------------------------Praise God!!!Dr. Stahl called me back told me to type up what I need and he will put it on his letterhead and sign it!!!!!! - ADDED 8/3/05----------------------------------------------------------------------------------------------------August 3, 2005...---------------------This week has been very frustrating and it is only Wednesday. On a good note the kids started back to school on Monday and Shayla is loving Kindergarten. Ethan is in the 3rd grade now and liking that very much also. [IMG]http://img.photobucket.com/albums/v109/boonpnutsmom/MOURA%20OHANA%202005/MouraKeiki080105.jpg[/IMG][IMG]http://img.photobucket.com/albums/v109/boonpnutsmom/MOURA%20OHANA%202005/EthanandShaylaFirstdayofschool08010.jpg[/IMG]****************************************************************************************************Last week I went to the bank to get all the paperwork changed. Tuesday, yesterday morning, the bank called and so began the battle of legalities. First they were fighting me on the fact that the letter looked like a copy and not an original. Then they wanted to CONFIRM with the Dr that Gma really had been diagnosed with these problems. I had absolutely no problem with this. Although they were implying that I had FORGED the letter and that I am doing all this to just steal Gma's monies. Then they tell me that they won't do it at all. I called our attorney and she calls the BANK'S attorney, and they go round and round yesterday afternoon. I talked to the attorney late in the day and she told me that NOW they bank is saying that the DR is not her PRIMARY DR and I need to get the whole letter changed to reflect this. I thought that I had found a way around this, in that there is a clause in her trust that has a sub clause....If the trustor has no regular primary physician, it shall be made by the physician who is treating the trustor for her primary cause of illness, so long as he or she is Board Certified in the specialty of such primary cause of illness.Here is where the problems started today....I pick Gma up and she is HAUNA (stink) I literally gagged. I am still gagging even thinking about it. She was recently bathed and the odor is not from her body, it is from her MOUTH. She is on a special medicated mouthwash that is supposed to help with this, but it is not at all. This is a smell I have had trouble with for the several years that we have been caring for her. My stomach was already all upset so this did not help. Turned the A/C on to NOT circulate air and tried not to really talk much so that she wouldn't have to answer me. Well, in the meantime, she got it in her bonnet to start some trouble. I have tried to be patient for several weeks but this morning was it. I went off on her. I confronted her about all the horrible things that she has been saying. Her answers..... " I have no idea what you are talking about" "I would never say anything bad about you or Gary" " I have no idea why I say these things"I have no idea what to believe. Is she really this sick? Is she saying things to hurt people or because she is really really sick. The bottom line is I found out today, the Dr that is treating her "primary illness" which is her mental problems, IS NOT board certified, she is board ELIGIBLE. This is a legality and will cause problems. She is also leaving the practice in two more weeks, so therefore will not even be treating Gma period. The new Dr coming in is not Board Certified either. What this means is they are semi-new Dr's and having not had many many years of experience, they have not done the final process of being certified, yet they are able to practice medicine and be a "Doctor". I have a call in to Dr. Stahl, for him to call me back. I have now backed him into a corner and he WILL HAVE to write the letter. The bank has frozen all of her assets for now, until this is resolved. I am mentally, emotionally and physically exhausted. It is getting more and more difficult to take Gma out, I would rather her care giver come with us, but it is not her responsibility, so that does not happen.On another note, Ethan came home with a note from his teacher that he was complaining he couldn't see the board, so she moved him to the front of the class. This is a really good thing, at least the thing of him being moved up, as this will help him concentrate more being right in front of the teacher. As to his eyes, this is really strange, because he can see things that I cannot even see with my glasses on. Shayla is making new friends in kindergarten and is not upset at all like some of her other classmates, so I am very relieved about this. --------------------------------------------------------------------------------------July 28, 2005...Today is my not so little Peanut's 8th Birthday. I have officially been breastfeeding for 8 STRAIGHT years. I have been so overwhelmed with everything going on that I didn't even realize I didn't have anything for him, so Shayla, Evan and I ran to the toy store and got him this really neat Lego Medieval Castle thing. I really think he is going to like it. As soon as Evan was down for his nap I made his cake it is just finishing cooling now and is almost ready to ice. We will be getting dinner from our favorite Italian restaurant as soon as Gary gets home. It has been a cold, drab, rainy day, but that is ok, it fit what had to be done today. I spent two hours this morning at the bank, first to meet with the investment center banker, then on to the account management, to change everything. I am now the successor trustee and nobody can do anything to take advantage of Gma. And to doubly insure this, IF something happens to me, it is now covered by OUR personal trust and is tied up until my youngest is 21 and he is only 2.5 so I don't think we have to worry. This has been such a huge weight lifted off of me. Gma is going downhill faster than any of us could have ever predicted and she is very unstable in ANYTHING that leaves her mouth now. She is currently torn between hating me and condemning me, but at this point I don't care, I just needed to be sure she would be care for properly without ANY interference from outside sources that are all of a sudden calling. Please things continue as they are and don't get worse faster.My Mommie and Ritchie made it home safe from their trip to the East Coast, I talked to her this morning. Gary FINALLY got to the bank so I don't have to worry about that end of things. Kola looks like she is doing a little better today. She ate 12 of the 14 worms that Gary put in her container for her last night. Kevin, Lisa, Justin and Jarred leave tonight for their long awaited trip after it ALL having been cancelled this morning due to Justin being sick. Kevin just came by and picked up the Rynatan, as a precautionary measure to keep Justin from getting worse. Things should be quiet here for about a week, then I guess, as nothing much will be given to me as EXTRA work, lol.----------------------------------------------------------------------------------------------------July 27, 2005...I have had a horrible day that started yesterday. My IL's missed their flight home from CA on Monday so they flew in here to Oahu yesterday and stayed over night to fly on home this morning. Sounds simple enough....Yesterday the kids were so excited to be having some company that they were very tiring to say the least. I needed to drop the kids school papers off on Monday, was already running a day behind, get to the school at quarter to 3 to find the office was closed from 1230pm and they never mentioned it when I talked to them earlier. Ok, so I will do that later, go run tot he Dr's office to go drop all the copies of the records from Gma's hospital stay that the HOSPITAL won't release to me, sounds like they have something to hide. Hurry back home to see the kids ARE STILL awake and it is now almost 4 so there won't be any naps, ok cool, early evening, no Evan falls asleep just a few minutes after I get home. Gary comes home and his dad wants this specific soup for dinner. Gary is sitting there talking to them while I am trying to get him out of the house so that we can go get it and come back before Evan gets up, no such luck. I end up going by myself. This is a soup that I can't even eat, but I make dinner and everybody sits down to dinner WHEN THEY ONLY THEN remember I can't eat it. Never mind, I go fold clothes. The ONLY thing I asked Gary to pick up on his way home was a bag of ICE, no he forgets this and decides he's going to go get it at almost 9pm. He takes Ethan with him, and leave Evan home with me SCREAMING at the top of his lungs. I tried to distract him by saying lets go feed the turtles...Kola is scrunched up in the corner bleeding. I get the kids back in the house don't want them to see this and call Gary. I tell him that Kola's foot is gone, he hangs up on me. Once he gets home I asked him to keep the kids in the house so that I can go get her out of the tank and see what's going on. Koki, her brother, has been terrorizing her since DECEMBER. I have been telling Gary over and over they need to be separated. He bought the plexi-glass to make a divider but has yet to do anything with it. I get Kola out of the tank to discover her ENTIRE back left foot has been bitten off. I put the Repti-Wound and the Bactoderm on it and put her under the hot light by my desk. I close all the windows and the doors in my office to keep the cats out and check on her through the night. The last thing I hear as Gary goes to sleep is....."It's just an animal" I couldn't even say anything. He knows that animals are very dear to me and I am attached to all of our pets. For months he has been telling me that Koki has not been biting her that it is shell ROT!!!! NOT!!! She was perfectly fine when I saw her not even 3 hours before. I had been watching one of our chickens most of the day yesterday she was acting strange so I checked the turtles also when I walked past. I think Henni is ok, something was wrong with her yesterday but she is acting ok today. I checked on her SEVERAL times during the night she is ok. I get up this morning and she looks horrible. I thought she was DEAD. I said a quick prayer and went to pick her up, she is all dark colored and dried out. These types of turtles are aquatic turtles but can go several days without water when something is wrong. I quickly put water in her sick container and Gary walks up behind me and asks...."Is she dead yet???" I couldn't even say anything. I brought her back in here and begin trying to keep the cats away from her. I finally decided to put her in our shower in her sick container with the door closed to keep her safe. I can't even begin to think of putting her back in the tank as Koki, the plecos and the other fish will smell she is hurt and they will all attack her.Gary leaves to take Ethan to summer fun, and take his parents to the airport. I needed to get to the school this morning and Shayla is out cold. She did not get up until 1030AM , growth spurt at 5 ? that is the 3rd time this week she has slept in that late. My really busy day with work is Tuesday, well somebody switched today and yesterday, the phone is ringing off the hook.The call that I have been waiting almost a week for comes....Dr. Tsai's office calls and the nurse tells me the biopsy came back normal. I muttered, "Great, we are back to square one with no answers" and she hangs up. Then she calls me right back, asking if I am ok, told her no. She said I sounded frustrated, explained that I am and asked a couple of questions. She has no answers and tells me if I want to see the Dr for a FOLLOW-UP appointment she can schedule one for THREE months from now. It will now be 9 months since I have originally gone to this Dr for my problem. She suggests I call the Registered Dietitian with Castle Health Wellness Center, do I know the number....ummmm... yes I have been under their care for almost 5 years now. She asks if I have ever tried an elimination diet. I POLITELY told her yes and that I cannot possibly eliminate anything further from my diet. She told me unless I wean Evan they cannot help me any further. Told her thank you and HUNG UP. The bottom line is, I now have in big red letters all over my file, that I am TERMINAL. That can never be retracted even if I do somehow manage to beat this. But because it says this nobody wants to do anything. It is no longer about patient healthcare but about MONEY. And the sad part is, I have a pretty much unlimited grant that pays all my bills in full and NOTHING is submitted to insurance as long as it has to do with the primary cancer. I am just so tired of trying to stay positive, to fight this, and still be the main one to care for my family and Gma. I have never asked to be pain free, I would like just one day with only a small amount of pain, to remember what that was like.I have a meeting tomorrow with the bank to get all the paperwork switched over to PROTECT Gma from herself. She is back to hating me and saying I am stealing all her money. I have refrained from posting anything about her lately because most of it was negativity, and that is not helpful to anybody. Took her to see the regular MD on Tuesday last week, he is finally saying something that makes a great deal of sense. Eventhough the CT scan did not show it, he thinks she may have had a stroke that brought all the dementia and psychosis.RANDOM THOUGHTSEthan and Shayla go back to school on Monday. I have all the school supplies they just need to be labled and put together for each. Tomorrow is Ethan's 8th Bday and I haven't done anything prepared for him, I did get him a Bible so I hope that is enough. My good friend is fighting for her life in the hospital right now is TEXAS so far away and I cannot do anything but pray for her. My sister is going through something really bad right now, and needs LOTS of prayer, and I cannot help her at all. Gary is at a meeting today until 8pm tonight. I had to make 3 big pans of brownies for Ethan's party at summer fun today, last night, this soooo goes against what is good for him, so he will be extremely hyper tonight. I have so many thoughts flying through my head, I cannot pinpoint them with any accuracy so I thought to just put them here to figure out later.----------------------------------------------------------------------------------------------------7/7/05....People can be so hateful....I understand she is sick, but Gma is just being down right hateful, hurtful and mean in the things that are leaving her mouth. She has told T that I need to leave Gary that he is the reason she doesn't live with me. UMMMMM, no, last time I checked I MOVED her out to save my health and family. She always taught me, if you don't have anything nice to say don't say anything at all. She GROUND that in me, and now she has taken leave of her sense and she is blaming ANYTHING that leaves her mouth on her "mind". That only works at the best of times. She has been vommitting since last night and I will have to call into the Dr soon if it doesn't stop. I will not gossip and even tpye some of the more hateful things she said but I WILL NOT GO SEE HER TONIGHT and possibly not tomorrow at all. If she is going to act like a spoiled child then she will have to see what her actions do. I am so terribly sorry if this offends anybody but there is GBD with her, she needs all out TOUGH love. I am just really glad that we have found such a strong person to care for her, because there is NO WAY NO HOW, I could ever do it.----------------------------------------------------------------------------------------------------7/6/05...There is a calm after the storm....I took matters into my own hands last week Friday and after a great deal of prayer on my part, I trusted a lady that I had never met before to become my Gma's care giver. It was a long stressful weekend, with many phone calls and many tears. I had to forceably have Gma discharged from the hospital yesterday. I am now waiting on a phone call from our family dr as how to proceed with some of the things going on which I will tell you all in a bit.Gma is living EXACTLY 6 stop lights away from me. There is a stretch of freeway in between there but it actually seems closer as we no longer have to sign in, wait for elevator and be seen by all these prying eyes. We don't have to be quiet as to disturb others. I will admit I was very shocked by T when we first met her. She was not at all what I expecting, but maybe this was a good thing. She is local, Tita, actually. She hunts, shes buff, she can handle anything Gma throws her way. She had shut down her care home for many years. She came recommended to me from a relative that works where Gma was living. I called and had no idea what to expect. She didn't answer and I left a message. She called me back late Friday night. She told me straight out she no longer took in people, but something told her to take Gma in. She spent the entire weekend painting Gma's new room and getting things ready for her. I went by Tuesday morning and the room was still in shameless and I was to bring Gma to her in just a couple hours. I was almost crying thinking this wasn't going to work out.I went to the hospital where the Dr and the Social worker cornered me trying to get information and names of where Gma was going. They wanted to place her in a home that would not have worked out for any of us. I later found out they get "cash" for placing people in these homes. They however, had told us it was ultimately our responsibility to find a place for her, so that is what I did. We found a nice Portuguese lady that Gma could connect with better. As her dementia gets worse so does her cultural differences in ethnicities. I had to threaten to call 911 for them to realease her to me. Once I did that wow things went fast and we were out of there in under 20 minutes! I called T and told her, "I got HER", I brought her home with me for a short while and got her some lunch. She was really out of it, now even recognizing me at times. I still had a great deal to do even after I took her to T's so I didn't stay long after I took Gma there. Last night was the first time in MANY weeks I didn't worry about her. The sad thing I still couldn't sleep. I started making phone calls this morning. She has her first Post- Psych appt for next week Wed 7/13 @ 2pm. I read through the letter of incapacity yesterday and realized AFTER we were home the Dr screwed me over with that. I have our family Dr trying to fix things. If not I will take it up with her other Dr on Wed. The Dr that wrote the letter KNEW exactly what I needed and he just didn't add one WORD and it makes it all useless.The main thing I am concerned about....Gma has been on a Beta-blocker since her heart attack 1.5yrs ago. In Feb the echo told us it wasn't working really well and her ejection fraction was 35%, not good at all. The cardiologist DOUBLED the medication that day, after it having taken us a year to get her up to the dosage she was currently on. Since she has been admitted the first time on June 13, they brought her down from 25mg twice a day to 12.5mg twice a day, to yesterday's discharge orders of the medication has BEEN STOPPED completely. This cannot and will not happen. When I filled her RX's today I thought the pharmacist was going to come after me, she wanted to know why it had been stopped. I told her I was working on getting it back in her med chart. She straight out told me Gma will go back in CHF ASAP and be dead in under a month if something is not done soon. I noticed yesterday she is already starting to swell and cough. T is being great with her meals there is no sodium what so ever to add to the fluid. The Dr at the hospital also cut her diuretics WAY back, this is not good either.I know I didn't start this journal to only be about Gma but I need to get her situated before I can really worry about anything. I read through her psych eval from in the hospital, she is really really sick and delusional. This is really hard for me as she is the one that raised me and took care of me.I took Shayla back today to get her TB checked. They wanted to poke her again because they didn't see it yesterday. We got to the office and they were CLOSED? I called and told them I had checked it and there as nothing and they were not going to poke her again just because they couldn't keep their normal office hours. We picked up her paperwork and she is now cleared to start kindergarten in 3 weeks. She is so excited.Then I went to pick up Ethan at summer fun and he was on TIME OUT, he had been climbing incorrectly on the jungle gym. Ms. K said it wasn't really time out they had just been talking about the correct way to play on there. I don't know what I would have wanted it called but I guess her explanation was ok. Still had to go to office and get mail and run to hardware store to buy a tool box to store all of Gma's new arsenal of medication in.We passed Gary on his way home as we were leaving the hardware store and met him at home. We then combined cars and went to go see Gma for a bit and give T her new scripts. T was ready to pull her hair out , I'm so sorry, but better her than me. I gave her a big hug and told her thank you before I even knew what was going on. Well, it seems, that Gma has been mad at me all day. I lied to her and told her all kinds of promises and what not. Not sure what that was all about but she had already forgotten it by the time we got there. T was very tired and will most likely have to have her sister stay with Gma soon as she needs a good nights sleep. I also need to check with Dr. S for sleep aid, as Gma was up every 15 minutes all night long. She has also regressed and now is in need if diapering. This is a huge undertaking for anybody, and for T to open her home for Gma a total stranger this has been a huge answer to prayers.I talked to my dad today and lets just say it was a total waste of time and all it did was piss me off. My brother called last night, first time since all of this has started and he seemed genuinely concerned but I didn't have time to talk much then, so he said he would call back tonight, so far he hasn't but he is busy too. I didn't want to totally monopolize the conversation, I did askhow my SIL and the babies were coming along. He mentioned they had had another U/S so I hope all is ok, they just had a big one about 2 weeks ago, I think.Yesterday was my one month mark of being off my estrogen patch. I can truthfully tell you I can't tell a single difference of being off of it. I have not lost any weight, I have horrid mood swings, hot flashes and am just awful to live with right now. But I was all these things while on it also. In the back of my mind I do know it is controlling the cancer so I really need to go back on it, but again, I am just so tired of being on medical "things". I haven't been to ANY dr for myself since April, that is the longest I have ever gone in almost 10 years. I do have my scopes coming up here in a couple of weeks and I have already started my elimination diet of the necessary things I need to cut out before then. I am so tired but it is not a sleepy tired. I am emotionally drained. I feel like I have nothing left to give to anybody, let alone still have anything to give to my heavenly Father. But it is at these times, that I have to rely SOLELY on Him to get me through all of this.Gary has been more than gracious to let me sit here and type all of this up again, so I really need to go tend to my children and spend a few minutes with them before they need to go to bed. I have been typing a full 45 minutes and gotten a great deal out of my head so I am hoping I can get some sleep tonight.
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August 25th, 2005
05:16 pm - Lay it Down ~ Jaci VelasquezLay It DownI’ve been looking ‘til my eyes are tired of lookingListening ‘til my ears are numb from listeningPraying ‘til my knees are sore from kneelingOn the bedroom floorI know that You know that my heart is achingI’m running out of tears and my will is breakingI don’t think that I can carryThe burden of it anymoreAll of my hopes and my dreams and my best laid plansAre slowly slipping through my folded handsChorusSo I’m gonna lay it downI’m gonna learn to trust You nowWhat else can I doEverything I am depends on YouAnd if the sun don’t come back upI know Your love will be enoughI’m gonna let it be, I’m gonna let it goI’m gonna lay it downI’ve been walking through this world like I’m barely livingBuried in the doubt of this hole I’ve been diggingBut You’re pulling me out and I’m finally breathingIn the open airThis room may be dark but I’m finally seeingThere’s a new ray of hope and now I’m believingThat the past is the past and the future’s beginning to look brighter now‘Cause all of my hopes and my dreams and my best laid plansAre safe and secure when I place them in Your handsChorusSo I’m gonna lay it downI’m gonna learn to trust You nowWhat else can I doEverything I am depends on YouAnd if the sun don’t come back upI know Your love will be enoughI’m gonna let it be, I’m gonna let it goI’m gonna lay it down
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July 8th, 2005
09:11 am - Here is a long.....LONG update.... I am doing a blanket email and I am copying and pasting from my journal...I in NO WAY mean to hurt anybody, these are my raw feelings and just need to get them out....Journal Name is Ko'u Pupule Ola - This means ~ My Insane Life...6/13/05 - Today could really be Friday the 13th with how it has been going lately. Today is my MIL's 72nd birthday and I didn't get the card in the mail soon enough so there is no way she will even get it until the end of the week.Ethan starts his summer fun program Wednesday but that is still two days away. The last thing I heard Gary say as he walked out the door this morning....Ethan you are in charge of Evan today. I don't think so.... I am trying to get some of my paperwork done and I have been listening for things, you know either that still quiet when you know they are up to no good, or the sound of screaming cause they are fighting. Well, so far neither. I did however, go look in the parlor and there is cereal all over the floor, turned around and came back in here and sat down, it can wait for a bit, they will have fun with the vacuum later.Heard back from the vet today after a long couple days...message on machine Saturday but it was garbled by the fax machine....NOTE TO SELF, if not waiting for fax turn it off when we leave, NEED to figure out difference hookup for phone I guess. Alani got the go ahead to schedule to have his tooth extracted, but he has a thyroid problem so they will need to monitor this. Normal levels for the "kinda" high was 2.5 and he is 3.3 so its high but not horrible, her words. When they do the extraction they will do a new blood draw to see if the numbers have changed. I have a feeling once the tooth is out he will greatly improve all around. Kitty goes in for her extraction tomorrow morning, so we will have to pull all their food and water this evening and put it outside. I will give them a good dinner so they will be fine. Kitty is having one of the front teeth pulled that we have been watching for over a year. We are going to pull it now to keep it from getting irritated and then they will also do her 10 yr dental scaling. She will be back home tomorrow afternoon. Noel is going in for her Spaying on the 21st and is in perfect health. Alani is 12lbs 12ozs, Kitty is 9lbs 3ozs and Noel is 6lbs and a little over, neither Ethan or I heard the ozs. Dr Ellison's description....Alani obese, Kitty overweight, Noel perfect.So that was all before 830am....Then right around 830 I get one more call....We went to give Gma her meds yesterday like we always do. Sunday is the big brunch day and she loves to go down to it, as she gets to see all the kids that come and visit with their families. We got a late start yesterday so we ran to drugstore to get her other meds I needed to finish this weeks box, and we got there about 11. First we looked downstairs nowhere to be seen. We go on up to her apartment and the first weird thing her door is unlocked and Boo rang the bell and she very weakly told us to come in. She was sitting in her recliner looking the h@!! it was bad. We stayed for a bit, put together a new fan for her and she didn't even talk to us or anything the whole time we were there, this is not like her at all. OF course, I am not seeing any of this for what it was while we are there. We came home after asking her if there was anything else she needed, answered no. I go to put her medicine container away and notice she hasn't been taking meds the last couple of days. She has CHF, Congestive Heart Failure, so she HAS to take her meds, she is also on a high dose of anti-depressants or she hallucinates. Well, I didn't hear from her for the rest of the day....this morning, just a bit ago the phone rings, it's the med coordinator in charge of health services, wanting to know the last time we saw her and what she was like. I explained yesterday and that she hadn't looked or sounded good, but that until last night had thought it was a cold. She is going to send somebody back in to check her swelling to see if her feet are getting bad, if it is this is not a cold at all but the CHF. She was also hallucinating and called 911 telling the police that there were little people going through her things and stealing her bank stuff. But of course when all this is happening she goes around and tells anybody that will listen that I am the cause of all this. She lashes out that she is a burden and we kicked her out and that I don't take care of her and all this other pish-posh that comes out with her dementia. I have a call into our Dr to see if he is coming to admit her, she needs to be in the hospital, it's bad this time. She hasn't been in the hospital for over a year, we were doing so well, but she is just to out of it this time. She wants us to give her her meds back so she can do them herself, she will kill herself and then I will be to blame for letting her do them. This is all so hard because she raised me, this is not how it is "supposed" to be. I am just sitting here in tears I don't know what to do. And of course it is summer so I have both of the boys home and I couldn't do much more than I am right now anyways. Don't know if this is a vent, a pray request or what, but I can't take much more.All I want to do is crawl back into bed. I have been off my Estrogen patch since last week Tuesday and I can't tell you that I have really noticed a difference in anything so I am guessing it wasn't working that great to begin with. But I will have to go back on it in 3 more weeks to keep things under control.Ok, back to my insane amount of work, it is slowly going down, but with it goes what little was left of my sanity.6/14/05 - Only about 24 hours has passed since my last post but it feels like a lifetime.. Last night at about 6pm I got a call that Gma was being admitted to a psychiatric hospital ASAP. She was in a psychotic state. She lives in an independent living retirement community, and there are aides there. She was trying to kill them with knitting needles. She mutilated her recliner telling these aides that there were people trying to kill her. I don't even know that I can type this all out, as I am about to fall over. I did just get a call from the admitting nurse and they have so FAR uncovered a UTI, shes dehydrated, and her liver enzymes are raised drastically, so now they are looking for ammonia levels. A little history here, about 5 years ago she was in Baycol a cholesterol medication that was pulled off the market, manufactured by Bayer. She one one of a few people that the drug was really recalled for. She developed a condition called Rhabdomyolysis, this is where the live enzymes rise, muscle breaks down and releases poisons into the body. Then the body sends them to the kidneys and they shut down leading to death. We caught it early the first time and the effects were reversible. This time we may not be so lucky, they are doing further testing to see if she is in kidney failure. I am so tired I cannot even think straight. I have to go to her apartment tomorrow and remove all her sewing stuff, silver ware and hair accessories, as she is using them as weapons. I called my dad last night and he didn't even particularly care. She was trying to kill an invisible person named Bobbie, he WAS a little shaken to know she has hatred in her for him, but other than that he pretty much told me she deserves what she is getting. I am still waiting for the Dr to call.Kitty also went to the vet today to have a tooth extracted so I am waiting for them to call to let me know how she is doing and when I can go get her. Made Alani's appointment, he goes next Thursday 6/23.I have been doing way too much. That gland that is located behind your ear?, it is really really swollen so much so it is throwing off my balance. I have had to wear my contacts today as I can't even stand my glasses hitting it. I called Gary and asked him to come home, but yet again, he is too busy to come.Update to the update.....6/14/05 10pm - Little bit of an update....I talked to one of the drs about an hour ago....She is dealing with 8 separate infections, the biggest ones being a maxillary sinus infection of the left orbital socket, an extreme UTI, pneumonia in her lower left lobe, she is also dehydrated and they have been scaring me all day telling me her liver panels were extremely high. The Dr finally told me her numbers and yes they are high, even extremely high for most people, but she has suffered from Rhabdomyolysis before and her numbers were in the 600-700's this is ASTRONOMICALLY high. We are nowhere near close to that now. She has been put on anti-psychotic drugs and a broad spectrum antibiotic. He is also talking of putting her on Aricept for possible onset of Alzheimer's. He needs to clear of the delirium from the multiple infections first. She was psychotic last night to the point of trying to kill the aides where she lives with her knitting needles. They got her calmed down for a bit asked her if she wanted me to come to her and she spewed that she wanted me dead. She was talking to invisible people, and saying that they were trying to kill her. The "people" have calmed down some, but now she is going on about people stealing her money and her afghans she has made over the years. It is so sad to hear/see her like this. I told the Dr tonight I will not go to where she is until she either asks for me or until he tells me I need to go. I do not to hinder her progress in any way. Her ammonia levels did come back normal so this is good as they were worried about encephalopathy, a brain disease. She has also been cleared of a stroke or possible blockage in the brain. They did however do an EKG and her heart is all over the place, they are picking up on her infarction. They still need to do a ECG (echo) to see if her ejection fracture is still down at 30% which ha maintained since her Massive MI in April of last year. A normal EF is 55 - 65% so she is nowhere near normal. So the wait begins, she needs to get better physically before she can recover mentally at all.6/18/05 - I'm so frustrated... I feel so totally helpless to help Gma. She is not eating and she still doesn't know who anybody is. Her nurse is nice enough but it like prying off toenails to get her to tell me anything. I called the admitting nurse to tell her I feel so out of what's going on and she gave me the number to the social worker. This lady, Jackie, although very nice is a typical social worker. She wants us to immediately drop everything and come sit with Gma (DR told me he did not want me doing this) She also informed me this is a locked ward, so no children allowed. The ONLY reason I would go to visit Gma would be for her to be able to see the kids. If the kids can't go in, then Gary and I would have to take turns going to see her and he won't go without me or the kids as a shield. And I don't feel the kids need that right now. But I do understand how important it is for her to see family. She thinks she has done something wrong to be put where she is. They nurses keep telling her what is going on, but 5 minutes later it starts all over again. I don't want to go and see her if it is going to set her back or hinder her progress to get better. This is where having no friends in real life and having never really left our kids with anybody is hard.I started this journal entry over 5 hours ago, and it has just sat here I will end it for now.I should not be happy at somebody else's misery, 6/19/05... We went to see Gma yesterday, it was really hard. She is in a horrible place physically but not to horrid a place mentally. I was actually surprised. But she is gone. She has no grasp on time or space so this has really messed with her grasp on reality. She thinks she has been there 6 MONTHS and it is not even been more than 6 DAYS. She has no idea why she is there or even where there is. I explained that she is very very sick and she doesn't even understand the physical part of it. She kept repeating over and over that "these" people that are here are more far gone, that she is much better than them. The only difference some of the people there were physically disabled worse than her. The nurse had me go over her admit notes, her retirement community did not have the updated med listing so they have been under medicating her on one of her most important meds, her Carvedilol, COREG.Fast forward to tonight....I spoke with the psychiatrist for over an hour. I specifically asked if she could be declared incompetent. He was VERY VERY shocked that she hadn't been already. He will start the letter to put this all into effect tomorrow. Now I also have to look into Adult Day Care for her when she is released. She now needs to be in a very scheduled routine for all of her waking hours. We went to her apartment today and cleaned it for three hours. This is not the scrubbing kind of cleaning, this is go through piles and piles of stuff and putting stuff away and straightening things. Now tonight the Dr is telling me she may not be able to go back to her apartment. He wanted to know the layout of it....[URL]http://img.photobucket.com/albums/v109/boonpnutsmom/fp-semi-suite.jpg[/URL]There is not a room for "extras". She is down to bare bones when it comes to her earthly possessions, but I would not want to take anything more from her. The Dr wants me to take away all her knitting and crocheting things. This has been a life-long thing. I cannot do that, nor do I think that I will right now. I need to figure out what is going to be done for her possible release on Thursday. The final diagnosis will be one of two things.....Alzheimer's Dementia or Depression with Psychosis. Either one she in no longer competent. This is where I am ecstatic. Not for this declaration but for the fact that after two years somebody finally believes me and she can now get the help that she needs. We found a journal of sorts that she has been writing in. It was an eye opener for sure. She is very hurtful to me in it.Over and Over she mentions that she can't count on anybody but herself. She thinks we are taking all her money. She says she will never step foot in my house again. She will never ask me for another thing. She is appalled at the way I am treating her after all she has done for me with my "childhood". She feels that she DESERVES to be treated better.I talked to my dad tonight, explained things. He is VERY VERY shocked, he told me he had no idea things were so bad. I am getting a complex. I really am beginning to believe I am totally invisible or something. NOBODY is listening to ANYTHING I have been saying for the last two years. I also talked to my uncle, her brother tonight. He told me he backs me 100% in whatever decision/s that we need to make.I am mentally to tired to deal with anything more tonight, but I needed to get this down before MY mind start playing tricks on me. To say the least, my ulcer is at an all time low and I expect I will probably start internally bleeding again. I am really really trying to take my meds for it, but with Ev nursing it is really hard to eat enough and at the times that I need to in order to take them correctly. So for now I am taking the pain meds to get through this and pray that it doesn't get bad quickly. I did throw up a little this morning but no bright red so we are doing ok. Other end is still ok also.Gma will be coming home Thursday 6/23 at 10am... Social worker called me and I knew it was too good to be true. They are releasing her back to her independent living with no more than med changes and now at least the letter of incompetency. But the place where she lives won't do much more for her in the independent living side where she lives. And how she is mentally, it will put MUCH more strain on our family to do anything else at the moment. We will have to take on additional services, to have her given her meds regularly through out the day, and to do "checks" on her. Not sure how this is supposed to help her as she had these services before and all it did was eat up her life savings faster. Her "place" told me that they cannot force her to integrate into the community any more than I can force her to make friends or for people to like her. They wanted me to come get her Wednesday and I had to apologize but there is no way we could then. Thursday is even going to be hard, but Wednesday was totally out of the question as Gary has meetings from 830 continuously throughout the whole day. He has at LEAST 6 meetings on Wednesdays. There was just no way. I am finishing up the laundry that we brought home yesterday and then I will go take that back today, and go talk to health services. They want to get rid of her and put her in the nursing home side, but she is still "physically" better than some of them. She thinks she is mentally better but that is the whole battle now. Somehow we need to get her to realize how sick she is and then go from there. She is no longer allowed to leave by herself to go anywhere but living in the independent area that she is I don't know how this will be enforced at all. She is also not allowed to have any handle on finances. I have no idea how I am going to do this. Where she lives wants her to go live somewhere else. They don't want to be liable. But how do I make this very STRONG WILLED woman do this? There is no Gentle approach to this at all. My toddler is more independent and alert than she is at this point. My anxiety is kicking in big time. This is too much, I don't know what to do or say or where to even turn.A Little Bit More Pupule... 6/25/05 - Our family Dr just called me back, and he is genuinely surprised at all that is going on. He has not been notified either of all that has happened. He didn't even know Gma had been in the hospital as long as she had and I was personally calling his office and leaving updates. He did confirm that she CANNOT go into a big group nursing home, that a foster home or a small group nursing home would be best. He ended the conversation with....I don't have any answers, you have your work cut out for you.The insanity continues... 6/26/05 - We just received a phone call that Gma has been READMITTED to the hospital ~ AT 9PM LAST NIGHT. Nobody even called and told us or anything. Seems she had some type of uncontrollable outburst and was throwing things in the dining room and scaring other residents. I have calls into the Health Director of her Community, The Director of the Hospital and I have talked to the nurse that has been instrumental in helping us thus far. She is the only one that has been able to answer any of my questions. She did tell me straight out, that Gma will not be coming back to where she has been living. She suggested Foster Care, these are individualized homes with only two residents per home. Gary is adamant that she can't go into one of these places because of the amount of medications she is on, but I don't think she can go into the ONE nursing home that he wants her in. This nursing home is horrible with a very high patient ratio to licensed staff and help. She was in there for about a month after surgery 2 years ago for rehab and it was a horrible experience for all. My uncle called last night and asked why she wasn't getting 24 hour care, I am guessing he knew this was coming. I never thought I would have to deal with this so quickly. I was sure her heart would kill her first. Gary is standing here now telling me he thinks I should pay for one more month at where she is living. THIS IS NOT THE TIME TO BE TALKING ABOUT THIS We need to make sure she is ok first and what happened and what's going to happen. He is a very ANALytical person and right now it is only making things worse and harder for me.On top of all this, now Ethan has a fever too. He had a headache this morning and woke up at 630am with a fever. I will not ask "What more?" as this will only make things worse. I am just so tired and feel so overwhelmed. Its not that I don't love her, I just can't take care of her anymore myself. But I don't want her to have to go live somewhere where she only has a few personal clothes. If she goes where Gary wants her to, she will have to share a hospital style room with only a hospital bed a small cabinet closet and a night stand. There is a COMMUNITY shower room, not even her own shower in her room. This will just be so degrading for her. She has it stated in her Advance Directive she does not want any life preserving measures. Are we at that point? I had this conversation with my mom the other day. She also informed me of the same thing and told me her insurance will soon not allow for her MS meds and if she stops these she is ready to die. She is only 61 years old, I am not ready to lose my mother and my Gma at the same time. I tried to talk to my dad and he just can't be bothered. There is nobody else to talk to. My MIL understands to a point but they live on another island and will be leaving for a month long vacation tomorrow so that doesn't help much. I have been running low grade fevers again daily and I know this is my bodies way of saying I am doing too much, but how do I slow down? It's either go go go or I am down and totally out and nobody will be able to step in.The other hard issue is the Dr that was treating her at the hospital last week is no longer there and he did not get me the letter of incompetency so even if they do want her to go live somewhere my hands are tied and I can't do anything without that letter.I don't know what to do, where to turn, which step to take.....The Pupule is overwhelming and to think she is living in this constantly, it must be so scary for her. She no longer has any control over anything her head says or does.I started this post over an hour ago, so I will end it now, update as I can.The Pupule has taken control and there is no way out... 6/30/05 - There is way too much to list right now, but I am on the way out the door to go meet with the Dr at the hospital about Gma. I have been hysterically crying all day. I will go pick up Gary as my eyes are so swollen I don't trust myself to drive all the way to the other side. Please pray that we are able to get what we need in the way of answers and paperwork. Pray also that we will be able to get back to this side in time to get the kids by 5pm.Gma will not be coming out of her Pupule World ever again 07/01/05 - The meeting with the Dr yesterday did not go well at all. It is his consensus that not only does she have Alzheimer's but also brain damage from her heart attack. I asked him if because her heart is not functioning correctly is this an ongoing thing. Is she suffering new brain damage on a daily basis? This makes me wonder....Going call the cardiologist on this....NOPE, all the brain damage would have been from the original heart attack a year and a half ago. OK that is one thing answered and down.She can not come back to Pohai Nani at all, we will have to give up her apartment, so Gary has already said he will have CDW come pack up all her things and move them back here. I have no idea what I will do with everything, but she will only be able to take clothes and a few personal items to the care home.The hospital just called...1245pm, she has no clothes that are clean why could they NOT have said something before we went out there yesterday??? They want me to come make a special trip right now, there is no way. I have to wait until Gary gets home after the kids are out of school. Evan seems to have picked up some kind of bug there at the hospital yesterday he has been sleeping almost all day today. Gary left before any of us were up this morning to catch a ride with G to work, since we didn't go back and get his truck last night. Our appointment yesterday was at 230pm to meet the Dr. We didn't get in to talk to him until 445pm. I had to call K to go get both Ethan and Shayla and he took them home and we picked them up from there and then he had to go back to work. I am so glad we could count on him tho, as there was nobody else that could have. I still don't have the letter of incapacity, is the new term for it, he informed us. But he will get it to me ASAP. I called Daddy last night as he has been asking a great deal of questions regarding MONEY!!! I didn't want to lie to him, but I put him on speaker phone so that Gary could hear also, and told him I have the letter and changes will be made that NOTHING gets past me, Gma no longer has any control and can't squander the monies for her care. He got very rude and started swearing. Gary was my witness, not once did he ask after his mother's health. He truly believed he was going to somehow get his hands on her money and leave her totally destitute. Was off to a great start this morning. I had everybody up and Ethan had to bathe as he fell asleep early last night, he did this with NO complaining. But on his way back to me, he stopped by the kitchen and ate something, knowing full well he is NOT allowed to eat anything until he takes his meds in the morning. I didn't get upset, I just calmly reminded him he needed to take his meds first. We left the house a FULL hour before Gary normally does. Both of the kids had excursions today, so instead of giving them their regular lunches, I got them bentos. They were both very happy. Since we were still rather early to drop either of them off, we went to Shayla's school first and ate breakfast in the parking lot. Got her all situated and left to take Ethan to his. I go to go sign him in and first thing I notice his morning teacher looked upset. As I get closer she has a book open and asking me to read and sign a page in it, there was an "incident" yesterday. Ethan wrote a letter to another classmate, all it said was .... YOU WILL DIE ... I couldn't breathe, I couldn't say anything. All I could do was offer up a very quick prayer that my son would be safe and I signed the paper. In the book, they had written that when they asked Ethan why he wrote it he had told them ... I don't know. This is his standard answer for any misbehavior now. I am at a total loss for what to do. But what I saw in this lady's eyes just crushed me. I called Gary when I got into the car and told him what had happened. I don't even know what we can do about it. I told Ethan we would talk tonight. The lady told me if it happens again he will be expelled from the summer fun program, they have no tolerance when it comes to any type of threatening or violence. HE 7 YEARS OLD!!! :pray :prayMail is here, I have to run out to truck....130pm, woohoo she had the address change papers in her truck. I need to now change Gma's mail options, and I still have to call the attorney and the bank.Evan is still sleeping, he is beginning to worry me. He woke up at 6am with me, was back to sleep at 8 to the store. Up for a bit, back to sleep at 9am for the ride home. He has now been sleeping since 1015am and it is 130pm. It is so hot here in the house, even with the AC on so that is not a good gauge if he is coming down with something.Dr.'s office just called, we have a busy day tomorrow. Both Noel and Alani have their post-op appointments at 830am, then Shayla has her Kindergarten physical and booster shots at 10am. Somewhere in there we also have to run to Kailua to take back the rental car that is sitting UNUSED in the driveway since both of our cars came back from the shop earlier than we were told.R is leaving for the mainland on Sunday, so I am trying to get all the paperwork done that I will need while he is away. I hope he is able to relax some while he is gone as he is under a great deal of stress also.I'm going to make a list of things to do that the kids can't tear up out of my book.1.) Change of Address Forms2.) Call Bancwest3.) Noel and Alani to Vet 830am 7/2/054.) Rental Car Return before 10am 7/2/055.) Take Gma clothes6.) Go by apartment and GET clothes7.) ATTACK and TAME laundry monster8.) Shayla Dr. S 10am 7/2/059.) Complete School Forms for both kids10.) Pay and Mail out all bills11.) Finish Fed ID Forms12.) Call movers13.) Avon order is due 7/3/0514.) Melaleuca Order - Place tonight or tomorrow15.) Clean Turtle Tank - Kola needs SUN TIME at least 4 hours16.) Chicken Coop Cleaned17.) Work Orders, Invoices, Postings, MER and EOM paperwork, completed by Tuesday AMI know I am forgetting some things, but that is a good start. I need to stop burying this and just post it, so I can get on to the other 20 things that it keeps getting buried under.7/2/05.... There may be some calm coming our way.... - I went to Gma's apartment today to get her clothes. As I was going up a wonderful lady gave me some names and numbers to try and find a home for Gma. I made a bunch of calls and we have an appointment tomorrow to go look and meet with one, and another on Sunday at noon.This evening we went and saw Gma and took her clothes. I wrote down EVERYTHING I took. She has been there since Saturday night and ONLY today they call me and tell me she has no clothes. We looked through her whole room and all I can find that is hers is a green and white striped shirt. There is no underwear or bottoms. I confronted the nurse about this and her answer was " I will have to check inventory "It seems they have people coming in and talking to Gma about the homes that they run. I am finding out these home on that side of the island are homes of terror and a side trip to hell. I really would like her to be closer to us at least on the same side of the island so I am looking. We told Gma and I told both nurses that were there.....IN NO UNCERTAIN TERMS IS SHE TOO LEAVE THAT HOSPITAL WITH ANYBODY BUT GARY OR ME, unless I say so. She seemed a lot clearer tonight, not so medicated. She was still having problems but not as bad as yesterday. We need to get her out of there. That is not where she needs to be. It is horrible, but for now it is safer than her being on her own. Tomorrow Shayla has her kindergarten physical, so we will talk to Dr S and see what he knows and things about these two places I have found today. One is an actual care home, so not sure that will work. The other is a ladies house, but she is unlicensed, and Gary will have to ask her some questions about that. I really don't think a license will make a difference in the quality of care, but I think it could cause problems of another sort later, so we will have to be very careful. She comes highly recommended and she knows Dr. S, so we will see.I never mentioned today that while I was doing errands this morning a guy pulls up next to me as I was putting Evan in his car seat. I turned to move the cart so it wouldn't be in the way and this guy opens his door right into my FACE. I have 4 loose teeth. I don't have the time to go to the dentist right now so I will have to watch them. As the door hit the left side of my face, I bit through my right bottom lip there was blood everywhere. This guy was a HUGE Samoan, 4 times my size at almost 200lbs. There was no way I was going to say anything. All I could do at the time was cry anyways, as it hurt so bad. I tried calling Gary and he was too busy to take my call, so this only added to the pain. Evan had me anxious most of the day also. He woke up at 6am this morning, was back to sleep on the way to Kmart, was awake in the store, back to sleep on the ride back home, up for a bit and back down at 1015am to 230pm. I woke him up to run to the office as paychecks were already a day late. R is leaving for the mainland Sunday, so I needed him to sign stuff for while he was gone. Evan then fell asleep again on the way back out to the hospital at 630pm, up at the hospital, then asleep on the way home. We were home just before 9pm, and he woke up for a SHORT SHORT bit and he is now back to sleep. I am hoping this is a growth spurt and not that he is coming down with something.Quote from: boonpnutsmom on Yesterday at 01:44:01 PM
1.) Change of Address Forms
2.) Call Bancwest
3.) Noel and Alani to Vet 830am 7/2/05
4.) Rental Car Return before 10am 7/2/05
5.) Take Gma clothes
6.) Go by apartment and GET clothes
7.) ATTACK and TAME laundry monster
8.) Shayla Dr. S 10am 7/2/05
9.) Complete School Forms for both kids
10.) Pay and Mail out all bills
11.) Finish Fed ID Forms
12.) Call movers
13.) Avon order is due 7/3/05
14.) Melaleuca Order - Place tonight or tomorrow
15.) Clean Turtle Tank - Kola needs SUN TIME at least 4 hours
16.) Chicken Coop Cleaned
17.) Work Orders, Invoices, Postings, MER and EOM paperwork, completed by Tuesday AM. I have had a long day, I'm going to bed for a few hours...

March 25th, 2005
08:47 amI have left the AA board. I'm just so sick and tired of the sqaubles that go on there. Whenever there this a MAJOR issue if I even voice an opinion I get shot down. SO I AM DONE!!! I deleted myself last night.

March 6th, 2005
06:50 pm - I thought I would put this down in case anyone ever wants to read it... As I am recently new, I want to put this before you all for prayer...I have Uterine Stromal Sarcoma, staged 4B. I was diagnosed on April 21, 1993, so we are coming up on the 12 year mark. I have had 21 surgeries in the last 12.5 years. Seven weeks ago I underwent a Complete and Total Radical Hysterectomy. I put it off for so long because we were told we would never have children. I prayed long and hard about this for many, many years. I knew in my heart of hearts that I was destined to be a mother, even if only for a short time. We had to have help conceiving Ethan who will be 8 in July, we did In vitro Fertilization for him and it took on the first try. I had MINOR complications with the pregnancy other than being on bed rest from 5 months along and precautionary because of previous M/C's. He was born after an induction by emergency C-section 23hours and 52 minutes after they induced me. Ethan was chosen to be our gifted one. And in the Lord choosing him to be so, comes the earthly problems of ODD (oppositional defiant disorder) and ADHD (attention deficit hyperactivity disorder). Our wonderful and beautiful daughter, Shayla comes next, we had help with conceiving her also. Gary and Ethan were both there when the Dr place "her" inside me. Not many big brothers can say they saw their sister actually placed in Mommie. That was a really rough pregnancy, on best rest from 12 weeks. I really did not want a repeat C-section so we tired everything in our power possible to keep this from being repeated. I had horrid migraines throughout my pregnancy so much so it triggered labor. We went in to see if they could stop the migraine, I knew the baby was in God's hands so I knew He would protect her, I just had to get this migraine to stop so I could do my part. 44 hours later, after my water having broken on its own 36 hours previously, my labor just STOPPED, no ifs ands or buts, NOTHING. Was rushed into the OR, for yet again ANOTHER emergency C-section. They classified this as failure to progress, I never got past a 2 with Ethan, never got past a 4 with Shayla. She was born the most mellow laidback baby and loved to nurse. She was my peace in the middle of all the insanity going on around us. My cancer was coming back rearing its ugly head for yet a 3rd time since the original diagnosis and after numerous surgeries and chemo regimens. I completed the chemo they wanted and was doing fairly well until I started going into massive amounts of pain that was uncontrollable by any medication. The Drs felt at that time a tumor had burst, so they did the normal things and did pelvic US and blood work up and found that yes ONE had burst but that my uterus was now again full of stromal sarcomas. We did treatments again which consisted of Extremely High Doses of the Synthetic Hormone Provera. This cleared everything out and lo and behold the first time I was allowed to be intimate with my wonderful loving understanding husband we got pregnant with no help from man, only a miracle straight from God.Evan's pregnancy was extremely hard as I now had 1 preschooler and 1 toddler, I was placed on bed rest from the GET GO. I do not produce enough progesterone to support a pregnancy and have had to have progesterone therapy for most of my pregnancies. At 32 weeks I was overcome by a bacteria infection they had never seen in pregnancy, and put on high doses of FLAGYL, to my understanding they only use this antibiotic in extreme cases in pregnancy. My body was in no shape whatsoever to even attempt a delivery after 2 prior ER Sections and then this infection. A scheduled section was planned for 9 days prior to my due date, as they needed him to grow as much as possible. Evan was born on November 14, 2002 and was PERFECT. He had some jaundice issues and the hospital experience was horrid, but we came home and we adjusted to having 3 children under the age of 6, fairly well.My Grandfather who raised me passed away two months later. My Daddy, Evan and I flew to California meeting up with my younger brother to help my Grandma bury him. As they are Orthodox Jews, they do not embalm, so everything had to be rushed as it is practiced to be in the ground within 24 HOURS after passing. It was my plan to close up everything in CA and bring Gma back to live with Gary, the kids and I. With my Daddy being there I thought this could be managed. No, it would be another 4 very stressful months of trying to get her to come. Finally on May 17, she called hysterical get me out of here. She was on a plane and here with us 2 says later. I respected my Gma so much it tore my heart to see the lady that raised me come into my home and try to tear my family apart, and then give up her own will to live. I came to a new understanding of why my Daddy was the way he was and of why from small child I KNEW it would be my responsibility and not his or my brothers. God knew a forehand that he would give the most wonderful and understanding husband that could deal with everything that Gma could dish out. By now it is November and Gary's Grandma passed away, we needed to fly to Kauai to lay her to rest and help his parents find finality. We were on Kauai for Evan's first birthday and not too many people even remembered because of the grieving. This was ok though, we were not there for birthdays, we were there to say goodbye. While, we were on Kauai I started feeling really bad physically. I had not been paying attention to my body for the past several months as everything had been so hectic. I was on the brink of major exhaustion, and to the point where one night I called the Drs and told them if you don't find somebody to care for Gma; I will leave my family, all of them and just walk away. I had never felt so alone in all my life. I have never questioned why I have cancer, but at this one point, I was at one of the lowest point of my life. I was willing to leave everything and run and hide; only I had nowhere to go. My life is my family so without them there is nothing. When we returned home, I had to go see the Drs as I had put off tests for way too long. One of the main indicators something was majorly wrong, I was once again bleeding all the time, and it wasn’t my normal menses. It was hemorrhaging. We also learned on December 4, 2003, that I was to begin the battle of my life. The cancer had come back with a vengeance and it was growing rapidly for a slow growing cancer. I went on the extreme high doses of Provera again, along with steroids, anti-nausea meds, anti-anemic meds, anti and pro many things. For awhile I went daily into the Drs offices and then had to have surgery to try and stop the hemorrhaging. I had a thermal Uterine Ablation in April. This worked fairly well as I had no bleeding for 8 months. During that time the chemo started to cause other symptomatic problems. In one case it separated the gums from my teeth. I had to have major gum surgery to correct this. At that time bacteria was introduced to my blood stream. Instead of feeling better, I was actually feeling worse. More testing showed that I had an infection called Bacteremia. Normally, pretty easy to treat but for my stubborn body, nothing was working. I started doing IVIG treatments here at home and was confined to my house. With these treatments, Intravenous Immunoglobulin, IVIG, treatments they give you the immunoglobulin of 100 DIFFERENT people to try and confuse your immune system to start working on its own. I was confined in a quarantine of sorts in my own home for almost 6 weeks. At this point they told me I was now being re-classified as terminal. They had given me a prognosis of 6mos to a year before we started the IVIG treatments. After this line of treatment was done, they did the bone marrow testing again and found that the treatment had not achieved the results they had wanted. I was starting to bleed again. We scheduled a different type of Uterine Ablation but the day before surgery it was cancelled the day before the surgery. I was told I had no other choice, at this point, but to do a complete and total radical hysterectomy. I was IMMEDIATELY scheduled, but as we were two days before Christmas this hindered when the OR would be back working at a normal pace. They got it scheduled for Thursday January 6, 2005. I called my sister and I was hysterical, she hung up with me called her DH and told him, “I need to go to her!!!” Her DH did not even question it, he filled out the necessary paperwork and HAND CARRIED them to his superiors. He was granted the Emergency Family Leave and she jumped on a plain and was here in less than two weeks. I have to explain, my sister Jen, is the sister I should have had all my life. We are so like minded and spirited when we first met, via the internet; it was like looking in a mirror. We had NEVER met in real life, but she dropped everything and flew 3500 miles to come take care of my and my family. She and Gary took care of the kids while I was in the hospital and took shifts bringing Evan to me at the hospital to nurse. It was the most humbling experience to have somebody that isn’t even a blood relation to drop everything and come, no questions asked. My own family didn’t even offer to come. Gary’s family was going on a pre-planned vacation and they wanted me to change MY “plans” to meet theirs. I prayed about this and decided we have come this far without their help we would do what was needed to keep going. While I was in the hospital under my GYN’s care, my Oncologist was running additional testing. I was released from the hospital and sent home to recuperate some more. The time flew by and it was now time for Jen to leave. It was so hard to deal with that, and along with still trying to heal. Blood work started coming back in the DAY AFTER she left, and it was not good. The blood work was now telling them it looked that as if I would need a bone marrow or stem cell transplant. The pathology reports came back that there was no new malignancies but still showed active growth. The chemo regimen I had been on would take a full three months to exit out my body in order to get accurate results. Being as I have now had the hysterectomy, they are unable to use some of the tests that they have used up to this point in monitoring my progress or set backs. I went Thursday to the neurologist for his work with what he needed to do. Then Friday, I went for the bone marrow aspiration, numerous blood test, x-ray, pelvic and abdominal ultrasound. Some maintenance medicinal changes were made, but now it’s just the waiting for results that is the hardest part. I have to go back to the neurologist on April 6 if there are no changes for his set of problems with a new medication he has put me on. I won’t know anything back from the Oncologist until next week Friday at the soonest. I have already talked to my one blood brother and he is waiting patiently to hear if I need him to get tested. Even though we share both parents, there is only a 25% chance that he would be a match. I COULD have my children tested, but Gary and I have discussed this and it is a closed subject. I will not subject my children to an operation that, could save my life, but could them at some type of risk. If our children were older, in their teens I would not question it at all, but they are babies yet. I have never been afraid to die, I have only been saddened by what I will be leaving behind. My children are not Christians yet, my husband isn’t either. I don’t know if he is strong enough to be able to deal with his on his own, as he has not turned everything over to the Lord.If you have made it this far, I so greatly appreciate it, this is where the prayer request comes in….My family needs to be blanketed in prayer. I do not pray for healing of my physical body, I would like healing of the spiritual welfare of my family. I have never pertained to understand what is going on, but I can’t blindly rely on myself to correct everything. I have turned everything over to God; I pray that He somehow works in Gary’s life to accept what is to come. Or, if he can’t accept it, to be able to find a peace to go on. This is so very hard for me to write down in words. I never have before. I’m sitting here with tears rolling down my face at a weight I feel lifting off me as I share this with you wonderful ladies. I have never belonged to a group where I felt that I could open up and pour this out in the open for all to see. Everybody I come across says, go here or there for this or that type of treatment. “Pray for forgiveness, you did something to cause this.” I don’t believe any of them. What I do know, is that this is what my life was destined for from the beginning of time. I only ask from God an understanding and discernment as to how I can better serve Him for Him to be able to work through me. Don’t get me wrong, I am not nearly as strong as this makes me sound. I throw tantrums, I cry, I am depressed, but not for many of the reasons, most people would think. I live in pain day in and day out, I don’t ask to be miraculously healed, I, just want to be able to spend as much COGNITIVE time with my children and my husband as I am able to as time permits. I want to have one day where my children don’t say or ask something that has to do with Mommie being in pain. If this is selfish of me, then I would like prayer to be able to accept things as they are. I don’t know how to rightly end this, but all I can ask is please PRAY. In His Name, Me

I found the cutest little alien looking graphics today...I just love this little guy. He seems so cute and innocent, but I am sure if I turn my back on him he turns into a monster like on alien. That's how I feel today about Ethan. He has been sick since yesterday. He has had a really bad headache with spike, woke at 2am with 102.9 fever, then started throwing up this morning. Took him to see Dr. Stahl and he said ears and nose were okay, but it looks like tonsilectomy in near future. He slept most of the afternoon, but tonight he's being monstrous. Well, time to put the little buggers to bed.

February 5th, 2005
08:59 am - Is it Monday YET??? Ethan is driving me insane, he only slept about 5 hours. Gary said let him stay up, he will sleep in tomorrow, yeah right. I still have some much work to do and it will not get done by itself. We have to take Gma her medicine today too. Shayla is crying yet again and Ethan is loving being able to terrorize her. Evan is just following them around, and when he thinks something is unjust he lets us know also. Roy is having another attack, the left side of his face is all swollen, he ate ahi yesterday so maybe it wasn't cooked good enough. I will try to keep track in here when he has his attacks. Mom and Dad are going to go home to Kauai next week Saturday. I love them being here and being able to help Gary, but Evan won't go by them, and he's being more Opihi than normal. Dad has gotten so much done, and it's hard to believe he is almost 82, there is such a huge difference between him and Gma. Today I put the last generic patch on and will call for refill of the brand name. I hope it stays on better and won't be tearing my skin as much. Ethan has to put his next Catapress patch on tonight also. He has an appointment with Dr. Jacobs on Monday at 330pm, I hope he is able to help with something more. I don't know how to get him to take the Concerta, it's not just being stubborn. His brain shuts down all rational thought and nothing will budge him.Koki bit Kola last night, her shell is all torn again. All the new growth is gone. I might have to separate them and hope that they will be okay without each other.Okay back to the grind, I need to at least pay bills for Roy until I run out of money yet again. Aloha Oe


08:04 am - List of Cast Characters... I tried this once before and it disappeared because I didn't back date the entry. So here goes again...

MOURA OHANA:::::
Gary::: Son to M&D, Husband to Lyssa, Father to Ethan, Shayla and Evan, Brother to Joan & Robert, BIL to Paige & Jennifer & of course can't forget JEN., SonIL to Robert & Janet, StepSonIL to Ritchie & Connie, Grandson-In-Law to Gma (Shirley). Uncle to Robin, Aryn, Ryan, Megan, Keegan, (Miranda, Mykael, Nykolas), Connor & Jordan, BIL (NOT BY CHOICE but sheer fact TO JEN.)

Lyssa::: Daughter to Robert & Janet, StepDD to Ritchie & Connie, Sister to Colby, StepSS to Beau, Charity and Ryan, SIL to Joan, Paige & Jennifer, Auntie to Robin, Aryn, Ryan, Megan, Keegan,(Miranda, Mykael, Nykolas),Connor & Jordan, SISTER BY CHOICE TO JEN.

Ethan::: Son to Gary & Lyssa, Brother to Shayla and Evan, Cousins to Robin, Aryn, Ryan, Megan, Keegan,(Miranda, Mykael, Nykolas), Connor & Jordan, Grandson to Robert, Jan, Ritchie, Connie, Wallace and Violet, Great-Grandson to Gma (Shirley), Nephew to Colby, Jennifer, Joan, Robert, Paige, Charity, Ryan, Beau, JEN.

Shayla::: Daughter to Gary & Lyssa, Sister (Titi) (Leila)to Ethan and Evan, Cousins to Robin, Aryn, Ryan, Megan, Keegan,(Miranda, Mykael, Nykolas), Connor & Jordan, Grandaughter to Robert, Jan, Ritchie, Connie, Wallace and Violet, Great-Grandaughter to Gma (Shirley), Niece to Colby, Jennifer, Joan, Robert, Paige, Charity, Ryan, Beau, JEN.

Evan::: Son to Gary & Lyssa, Brother to Shayla and Evan, Cousins to Robin, Aryn, Ryan, Megan, Keegan,(Miranda, Mykael, Nykolas), Connor & Jordan, Grandson to Robert, Jan, Ritchie, Connie, Wallace and Violet, Great-Grandson to Gma (Shirley), Nephew to Colby, Jennifer, Joan, Robert, Paige, Charity, Ryan, Beau, JEN.

Dad (Wallace)::: Husband to Violet, Father to Joan, Gary and Robert, FIL to Paige & Lyssa, Grandpa (Papa) to Robin, Aryn, Ryan, Ethan, Shayla, Evan.

Mom (Violet)::: Wife to Wallace, Mother to Joan, Gary and Robert, MIL to Paige & Lyssa, Grandma to Robin, Aryn, Ryan, Ethan, Shayla, Evan.

Joan::: Daughter to Mom & Dad, Sister to Gary & Robert, SIL to Paige & Lyssa, Auntie to Robin, Aryn, Ryan, Ethan, Shayla and Evan.

Robert::: Son to Mom & Dad , Husband to Paige, Brother to Joan & Gary, BIL to Lyssa, Father to Robin, Aryn and Ryan, Uncle to Ethan, Shayla and Evan.

Paige::: DIL to Mom & Dad, Wife to Robert, SIL to Joan & Lyssa, Mother to Robin, Aryn and Ryan, Auntie to Ethan, Shayla and EvanRobin, Aryn and Ryan::: Daughter and Sons of Robert & Paige, Grandkids of Mom & Dad, Niece and Nephews of Joan, Gary & Lyssa, Cousins of Ethan, Shayla and Evan.

:::::::MOURA OHANA PETS:::::::::
::::Popoki's (CATS) :::::
Alani::: Almost 10 yr old Orange Tabby TOM 2/28/95
Kitty::: Almost 10 yr old Inverted Calico QUEEN 5/14/95
Noel::: Born 10/26/04 Calico Christmas Surprise from Gary
::::Honu's (TURTLES) ::::
Koki::: Spiny Soft Shell Turtle Hatchling born Spring 04 (possibly Male)
Koki means Snout-nosed
Kola::: Spiny soft Shell Turtle Hatchling born Spring 04 (possibly
Female) Kola means FriendsSo their names together mean
SNOUT-NOSED FRIENDS as they have long pointy noses.
:::: Moa's (CHICKENS) ::::
Henni::: Rhode Island Laying Hen (Born Summer 04)
Jenni::: Rhode Island Laying Hen (Born Summer 04)
:::: I'a's (FISH) ::::
Randy::: Oranda (Female) and her little Friend Shelly the Snail
The Al's::: 7 Algae Eaters in the Turtle Tank and a Few Misc Comets and
1 HUGE Gold fish
::::Manu (BIRD) :::::
Faith, Hope & Promise - our beautiful singings Love Birds.

ACKERFIELD OHANA::::
Robert::: Husband to Connie, Father to Lyssa & Colby, StepDad to Charity & Ryan, FIL to Gary & Jennifer, Papa to Ethan, Shayla and Evan, Connor & Jordan, Grandpa to Megan & Keegan, Son to Gma (Shirley)

Connie::: Wife to Robert, Mother to Charity & Ryan, StepMom to Lyssa & Colby, StepMIL to Gary & Jennifer, Grandma to Ethan, Megan, Shayla, Keegan, Evan, Connor and Jordan.

Colby::: Husband to Jennifer, Son to Robert & Janet, StepDS to Ritchie & Connie, Sister to Lyssa, StepBrother to Beau, Charity and Ryan, Uncle to Ethan, Megan, Shayla, Keegan and Evan - Father to Connor & Jordan and their furball "Ozzy"

Jennifer::: Wife to Colby, Daughter-In-Law to Robert & Janet, StepDIL to Ritchie & Connie, SIL to Lyssa & Charity & Ryan & Beau, Auntie to Ethan, Megan, Shayla, Keegan and Evan - Mother to Connor & Jordan and their furball "Ozzy"

Charity::: Daughter of Connie, StepDD of Robert, Sister to Ryan, StepSiter to Colby & Lyssa, SIL to Gary & Jennifer, Auntie to Ethan, Shayla and Evan, Ex-Wife of Shane, Mother to Megan & Keegan

Megan & Keegan::: Daughter & Son of Charity & Shane, Cousins to Ethan, Shayla and Evan, Grandchildren of Robert & Connie

Ryan::: Son of Connie, StepSon of Robert, Brother of Charity, StepBrother of Colby & Lyssa, Uncle to Ethan, Megan, Shayla, Keegan and Evan, Father to "UNKNOWN BABY GIRL", Husband to Missing Wife Kim

Gma (Shirley)::: Mother to Robert, Mother-in-law to Connie, Grandma to Colby & Lyssa, Gandma-in-law to Gary & Jennifer, Great-Grandma to Ethan, Shayla and Evan

Christianson Ohaha::::
Ritchie::: Husband to Janet, Father to Beau, Stepfather to Colby & Lyssa, FIL to Gary & Jennifer, Papa to Ethan, Shayla and Evan, Connor & Jordan
Janet::: Wife to Ritchie, Mother to Colby & Lyssa, Stepmother to Beau, MIL to Gary & Jennifer, "JUICE" Grandma to Ethan, Shayla and Evan - Grandma to Connor & Jordan,Mother to Mercy & Goodness, Sandy and Putty
Beau::: Son to Ritchie, Stepson to Janet, Stepbrother to Colby & Lyssa, BIL to Gary & Jennifer, Uncle to Ethan, Shayla and Evan

EXTENDED FAMILY:::::
JEN::::: Lyssa's SISTER BY CHOICE:::: Eric, Miranda, Mykael, Nykolas, Lucy and Fishies :::: (Her Ohana)

Fay::: Lyssa's Dearest Friend for over 15 years::: Jason, Adam, Dylan, Gabrielle, Gma Aiko :::: (Her Ohana)

PattiB::: Lyssa's Dear Friend for over 15 years::: He'ui, Kawika, Cheyne, Calum Jaedon (CJ), Alux Jaeylon (AJ) :::: (Her Ohana)

Roy::: Owner AAA Termite & Pest Control ::: Husband to Lillian, Father to Lisa & Leah, Papa to Trevor, Tyler, Justin and Jared, Hanai Papa to Gary & Lyssa's Keiki, Uncle to all

Kevin::: Husband to Lisa, Father to Justin & Jared, Second in Command AAA Termite & Pest Control, Lyssa's Business Cohort, Uncle to All

Wayne::: Kevin's Cohort, LOYAL AAA Employee since 1975, Husband to Nora, Uncle to All

Lydia::: Lyssa's Hanai Momma

I will update as new character come into the picture. Aloha Oe'