Today

Kyla is sleeping all the time now and after talking with Hospice we have her tremors which turned out to be small seizures under control. Hospice could not send anyone out when I requested it because they are short staffed so I worked with the nurse on phone duty. She was very helpful but I could really use some support to know about time and things. A woman in contact with us was kind enough to direct me to a web site that she had made up for end of life and what to expect for brain tumor patients. After taking care of her father she felt this was something that was needed. Indeed it did help me tremendously as the nurse from hospice had never gone over these things with me.

I also talked with my mom who has taken care of many dying patients and she was able to walk me through some things to expect as well. She was probably the most helpful of all to me both medically and emotionally. Thank you mom! I love you tremendously.

Jill and Kelli spent last night and are spending tonight with us and we are taking turns staying in the room with Kyla since we know that the time is near. Her breathing is very ragged and slowing somewhat. Dave moved an easy chair in her room for us to sit in. I could not bear it if she was alone.

Update

We are seeing a very rapid decline. Kyla did not respond to much at all today. Yesterday she slept most of the day but was able to rouse enough to eat dinner herself at the table with very little help from me. I had to feed her breakfast and lunch but she was awake and able to eat although had difficulty moving food to the back of her throat. When I checked her at 2:00 am, she had a very bad headache but was unable to answer me when I asked her about her pain....just nodded. I gave her the pain meds and she seemed to be able to rest after that. Her eyes were open this morning for her bath but she does not have any muscle control much now. She did not respond much at all today, just a few brief moments, one of those was when her friend, Teresa and her daughter, Delaney were here. She opened her eyes and motioned for Delaney to come to her and stroked her arm for a few minutes before going back to sleep.

Barb came and spent the morning with us yesterday and the nurse also made a visit. Kyla is having tremors off and on and her feet and hands, especially her left hand, are posturing. Jill helped me today to take her to bathroom and because it seems to be so hard on her I decided we should probably not move her from the bed any longer. It just seems to take so much out of her. She woke up tonight around 10:30 and said hi to Dave and responded with a nod that her head hurt. She was able to swallow her medications for seizures and pain crushed in applesauce followed by a couple of sips of water. She ate very little today, just a few bites and sips. I feel time is short for her. Maybe tomorrow will be better.

Good Days

Kyla had a good day yesterday. I even managed to convince her to let me take her outside for a walk in the wheel chair. Maybe she remembers me giving Emmy a ride on her tricycle and crashing on the way downhill in our driveway several years ago and was afraid of my driving! But she just chuckled when I reminded her of that episode....can you imagine how dumb I looked? But we did walk in the sunshine and there was a wonderful breeze. When we came back up on the deck she decided she wanted to sit in the swing with me so we stayed out there for about an hour and had a chance to talk and I could tell her how much I love her and will miss her, my little girl. This brought both of us to tears and she said she would miss her girls the most. Since her surgery in March she has not cried or been able to feel much emotion about things. The surgery and disease had affected her judgement, emotions, etc. so this was good to see that she really does feel things, just not in the way we remembered. Barb and Kalli brought us dinner that evening and after eating she was pretty wiped out and went to bed.

Today she spent most of the day sleeping after her shower. That seems to make her so tired and relaxed each day. Shirley, the hospice nurse made a visit this afternoon and showed me some exercises to do with her arms and legs and ordered the medications we were running out of. Kyla stayed awake most of the late afternoon so that she could see her cousin, Eric and his girlfriend, Stephanie in the evening. After they left she was very tired and so I got her ready for bed and she is now sleeping peacefully.

Little Lucy loving her momma on the day Kyla left for Disneyland

Grandpa Leroy with Lucy and Emma during his visit to Kyla

Addie Mae and Kalli posing before swimming on a very hot day

Vonda with the girls, Lucy, Lexie and Addie Mae

Emmy posing before swimming....check out her cool goggles!

A toothy grin from Lucy

Byron and Lucy get a ride from Uncle Brian (aka Uncle Handsome)

Byron with the cows

Byron takes a swim

Caring for Kyla

Since I wrote last, Kyla has declined fairly rapidly. She is now is in a wheel chair as her left side mobility is affected. She doesn't communicate much...just answers yes and no mostly. But every once in a while she will talk a little. She spends much of her time sleeping, either in the recliner or in bed. I try to keep her out in the house with us during the day even if she does sleep. It just feels better to have her with us. Brian and Charo spend most of the mornings with us and Jill and Lucy, Emma and Byron spend the afternoons. I have been able to get out a couple of time to run an errand or two and that is so great. We now have a hospital bed for Kyla which makes it much easier helping her up and down. She basically can't take care of herself at all now. I shower, dress, and change her. She can still eat but even I have noticed that she is having a little more difficulty each day.

We have had so much company since her move out with us. Her grandfather from Baker, Leroy came to see her, her aunts and uncles, Barb & Rick, Loretta, Kristi and Pat, Gary and Patti, Mike and Linda, & John and Lisa, cousins: Kamisha, Jason, Aaron, Shalon, Schelly, Jordan, Addie Mae, Lexie, Kallista, Molly, Sean, Celina and Marisa all have visited in the past week. Her friend, Teresa comes at least once a week as well as visits from Susan and Alison, Joe and Shari, Dez, and others that I just can't think of now. I read her all of the notes and messages and she feels all the love and support right now and we all thank each of you for your time as well and lovely cards and messages, phone calls and visits. It means more than you know.

Kyla and Emma had a wonderful time in Disneyland. Jill did such a great job taking care of Kyla. Thank you Jill! You are terrific. Our days are spent caring for Kyla and surrounding her with love as she prepares to leave this world. I will try to post again soon.

Moving Kyla and Disneyland

Emmy at Disney Land. Look at that happy face!

Brian came home from Spain last Friday. Needless to say he was shocked by the deterioration of Kyla and so sad to see her this way. She is declining at a fair pace and is now moved out to our home and I have taken a leave of absence to care for her. Her knees are very weak and she can't get up from a low sitting position without aid so it is quite difficult for her. She knows her mental state as well as her physical state is changing and this bothers her most. But she is not showing much emotion about things because the area of her brain that controls that was affected by her last surgery as well as the disease. It is probably a blessing because if she were sad or scared I just couldn't cope. It is heartbreaking enough to watch this wicked disease steal her away from us and feel so helpless to do anything to stop it.

Hospice has been so wonderful. There are some great people working to help people like us. Last week a volunteer came and videotaped Kyla for her girls. She plans to return this next week to do a little more if Kyla feels up to it. The hospice chaplain is really sweet and comforting to Kyla as well and seems to put her at ease. The nurse is visiting once a week at this point and will come as needed. She has been helpful to get Kyla back on track on her Decadron which she had stopped taking (she thought she was).

One of Kyla's greatest wishes was to take Emma to Disneyland this summer as promised. Her co-workers in Linguistics submitted her wish a few weeks back to a wish foundation but because of her decline we could not wait for them any longer and planned the trip for this week. Jed and Emma went as well as Jill who is caring for her while there. She needs a wheel chair and help going to the restroom as well as someone to manage her medications. They have been having a good time and I am so glad that she could follow this through for the sake of creating a wonderful memory for Emmy. She was even able to go on some of the rides with her. We are so very blessed to have such wonderful kids. I don't know what we would do without them. Kyla is so very loved by all of us. I will post soon with some pictures of Disneyland and of course Lucy and Byron, who Wade and I took care of while their mommies were gone.

Sad News

I am sorry to have been away for so long on the updates. Somehow I just did not have it in my heart to type these words. But because so many people have asked about Kyla I need to let you all know how things are going. Since my last update another MRI was done and after sending the scans to UCSF, we received the sad news that the treatments were not working and that the cancer has now spread across the midline and is inoperable. Kyla was given the option of continuing with chemo which is not helping or to stop and try to have quality time with what she has left. She chose the quality time.

So the last several weeks have been a whirlwind of setting up hospice and making decisions. Kyla has such a positive outlook and is at peace with where she is. The only thing that worries her she says is telling Emma. We are working with hospice and social workers on that so I know God will give us the grace to work through this. Aside from the horrible side effects of the Decadron, she feels well. She is having a few problems with her memory but is not in pain. She wants everyone to know how much she loves them and appreciates all that has been done for her these past 4 years. So for now, we are taking each day and loving her.

Avastin Treatment and Surprise Visit

Kyla was able to return to work on the 24th. However, because she was weaned off of Decadron on Mothers Day, she has been having trouble waking up. So her oncologist put her back on a low dose of Decadron for swelling. She seems to be a little better although tired from her treatments. She had a doctors appointment and blood draw on Friday the 26th. Monday she had an Avastin infusion and that went very well. We were told by a nurse that if she was well hydrated it should help with the IV situation. It seemed to work great and the IV went in the first try. So we were only in the hospital for and hour and a half then went to lunch. When we arrived back at Kyla's house Dave and Wade were busy working on her arbor again. Wade mowed her back lawn and her flowers that I planted are beginning to grow nicely.

My brother Jay and his wife, Lori, came for a surprise visit over the long weekend. We had a great time visiting with them and their dog Max. Saturday we had Kyla, Emma, Lucy, Kelli, Jill, Wade and Byron out for a BBQ so they could visit with Jay and Lori. We got to see a large group of turkeys and several young bucks in the front yard. But the best thing was a momma turkey brought her little babies out (8 of them). They were darling. Sunday Dave and I as well as Barb and Rick were able to go to dinner at a great Hungarian place in Albany (Novaks) with them. A wonderful place to eat. We will have to go back soon. Jay and Lori just purchased a Deli in Baker so they will be VERY busy for quite some time. I am so glad we had a chance to see them.