Upate

Time marches on even though we are missing Kyla so much. The celebration of life was nice and all of our families and many co-workers and friends attended. We had a gathering at our home following the service for family and Barb, Kristi and Mike outdid themselves providing all of the food and drinks. I felt in a fog for that day/evening and still do sometimes. All we can do is take each day one at a time. 

The inurnment was done on September 5th. Brian, Jill, Wade, Kelli, Emma, Dave, I and Dave's parents were all there and decorated her memorial with a tribute to her life. I will try to put a picture up later when I have one. Brian and Charo have gone back to Spain. Brian is preparing to begin a new job this next week and looking for a place to live. He has been pretty homesick especially given all that has happened in our family lately. He was undecided if he wanted to go back but decided to give it a try at least until Christmas. He will be coming home for the holidays and perhaps will be feeling a little better by then.

Jill and Kelli are keeping quite busy and seem to be coping. I know they miss Kyla like crazy. We sorted through Kyla's belongings because Jed moved last weekend. So I think most things are taken care of now. Emma has begun a new school and is playing soccer. Little Lucy is with new day care providers and seems to be doing OK. We have been able to keep the girls every weekend since Kyla's service which really helps me with missing her.

Perhaps I will update this once in a while to keep everyone updated on the girls.

A slide show like this was played at Kyla's memorial service. She loved this first song and it somehow speaks of how she felt about family. The second song was one I chose because it just speaks to me of her life song. The third song her siblings chose to go with the photos of her with her girls.

Make photo slide shows at www.OneTrueMedia.com

Celebration of Life Service

A Celebration of Life for Kyla will be held at the First Christian Church, 1166 Oak Street in Eugene on Saturday, August 19, 2006 at 6:00 p.m. Inurnment will follow at a later date at Springfield Memorial Gardens.

Driving Directions: Oak St. is a one-way street headed North. It is bordered by Pearl St. to the East (a one-way street headed South), and Willamette St. to the West (a two-way street). First Christian Church is just off the corner of 12th and Oak. The parking lot is behind the church, accessible from Willamette St. If you are headed to Eugene from the I-5 freeway, you can take the I-105 exit. Follow I-105 West until it ends, and turns into Jefferson St. Jefferson St. heads South, and you can then turn left onto 13th Ave, heading East. Follow 13th until Oak St -- turn left on Oak, and the Church will be on your left after 1 block.

Below is Kyla's obituary. If you click on the image it will be come large enough to read.

Goodbye To Our Lovely Kyla

Kyla passed away at 3:10 pm today.

All of us (Brian, Jill, Kelli, Wade, Charo, Dave and I) were with her. She did not suffer and went very peacefully just as we prayed. We were so very blessed to have her for as long as we did and to take care of her until the end. God blessed her with so many wonderful people that cared about her and we wish to thank everyone who expressed that to her and to us. All of the donations, cards, and phone calls are so very much appreciated. We have been surrounded by love all the way through this process. I will let everyone know the date, time and place for the celebration of life as soon as we find out more details. We are hoping for this next Saturday.

The day before Kyla passed away I sent Jill and Kelli to buy a pair of pajamas for Kyla that she could be wearing at the end. They did a beautiful job and came back with pale pink silk pajamas and a surprise for me. They could not resist. They bought three pairs of gnome pajamas, one for each of them and one for me. So last night they made me put on mine and Dave took a picture of us. Silly girls. I know this is something that Kyla was laughing at...my dislike for gnomes was a great source of entertainment for her as well as her siblings. I want to also note that Jill and Kelli took the time to put matching polish on Kyla's toes and their own the evening prior to her death. One last thing to do together. Such love.

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.

Treatment, MRI Date and Cousins

Kyla's chemo and Avastin treatment was last Tuesday and she tolerated both well. It is the IV that seems to be the big problem....it always takes 2 to 3 hours to get them in. Treatment at the hospital is very slow. It seems we do more waiting around for things like the medications and nurses in general than anything. We ended up re-scheduling her treatment from Monday to Tuesday because she was not scheduled by the oncologists office for some reason. She was finally weaned off the Decadron and is doing well so far. She has another Avastin treatment on the 29th and then an MRI on June 5th. We are praying for good results. We see her oncologist this Friday to check on her blood counts.

We started building the arbor for her back yard but need to get back and finish. Hopefully this weekend we can spend some time doing that. I had a lovely mothers day. The Saturday before we gathered and did yard work for Dave's mom for mothers day. A long day but the yard looks lovely. Kyla, Kelli and Dave cooked me a wonderful brunch and Jill was treated like a queen by Wade. Happy Mothers Day to all the wonderful mom's out there, including my mom and Dave's as well as Kyla and Jill.

My sister, Kristi and her family arrived for a special visit over the weekend. Lucy and Emma spent the night with us and Emma got to sleep in the pop-up tent camper with her cousins. The kids all had so much fun together looking for lizards, feeding chickens, gathering eggs and feeding the cows. That and fishing in the swimming pool and building a secret fort. Oh to be that age again! Dave's cousin Nate and his wife also came for a short visit of course at the same time so we had to split the visiting up but we were so glad to see everyone.

Happy Birthday to Molly, Pat and Linda!

Happy Birthday Kyla!!!

Today Kyla turns 28. Does time fly.....seems like only yesterday she was that impish little girl that was begging me to clean house. Yes people, she loved to clean. I used to think of her as little "Miss Suzy Homemaker". Truthfully, I am so very honored to be her mother. I see her as such a positive person, always so strong and sure about her life. She has a stubborn streak in her that I know has been what is needed to face this disease like she does. She has a loving heart and is so protective of her family and she has such a great sense of humor and contagious laugh. We all love you Kyla.....have a wonderful birthday!

Her infusion of Avastin went well, just extremely slow getting started. Her next chemo and Avastin infusion will be May 15th. We had dinner last night with Joe and Sheri and Dave and I are taking her to dinner tonight for her birthday. Then Saturday we will be having a family birthday dinner for her at our house and hopefully get her birthday present started. She wants an arbor built in her back yard so that is the plan.

Kyla at six weeks

Eight months old

Kyla's first birthday

Kyla at four

Kyla in first grade

Treatment Plan, Birthdays and Easter

Sorry it has been so long since I have updated.....very busy and hectic times for all of us. It was confirmed that the cancer has returned. So now the treatment plan for Kyla is chemo (Carboplatin) every 28 days and an infusion of a drug called Avastin every two weeks. My understanding of Avastin is that it is a monoclonal antibody also known as targeted therapy which works to make chemo more effective. Kyla has had one infusion of chemo and Avastin two weeks ago as well as a shot of Neulasta the day after to boost white blood cell count. She is having an infusion of Avastin again on Monday, May 1st. So far she has done well with the chemo but the steroids are another issue. The side effects are terrible for her and the doctors in San Francisco decided to wean her off in two weeks instead of a month. That was a big mistake and the swelling on her brain caused some difficulties for a week until we got her back on and feeling better. So now the plan is to wean her off very slowly.

We had a belated birthday dinner for Kelli the week after our return from San Francisco. We had a nice Easter brunch with Jill, Wade, Byron, Kelli, Kyla, Jed, Emma, Lucy and Dave's parents. The little ones looked so darn cute all dressed up. We also celebrated little Emma's 6th birthday amid all of this. On her birthday she wanted all of her family to have dinner. Her pick for the dinner was tuna fish, macaroni and cheese, carrots and broccoli. Then on the following day Kyla and Jed made her a cute castle cake and they had a tea party for her and her little friends. Happy birthdays go out to Uncle Mike, Jason, Jeremy and my dad.

Lucy pointing at the turkeys in the field

Kelli celebrating her belated 21st birthday

Byron loves his Spanish bull that Uncle Brian sent from Spain

Emmy colored the eggs for Easter

Emma and Byron all dressed up for Easter

Lucy dressed up for Easter but didn't want to pose with her sister and cousin

Surgery

Kyla's surgery was Tuesday the 14th and she came through fine. After another MRI before surgery Dr. Kunwar was concerned because the enhancement in the left frontal lobe had enlarged since two weeks ago. To clarify, this enhancement is in the old area from four years ago. So he cleaned it out as well as another spot on the right side (the area that was operated on in January). The preliminary pathology looks like abnormal cells but won't know for sure until next Thursday when the final report is back. If indeed it is progression they will discuss chemo as the next step.

So as far as Kyla feels she is still in ICU until the drain tube is taken out and is somewhat confused from the swelling but that should get better in a little time. I stayed in ICU the first night and Kelli stayed last night so I am off to the hospital now to relieve her. Thank you everyone for all the prayers and wishes.

San Francisco Trip, Another Surgery Scheduled

Kyla flew with Jill to San Francisco on Wednesday of this week for another scan. The MRI shows a larger bright white spot and after being presented before the tumor board the consesus is that it looks like necrosis. However, they can't be positive without a biopsy. She is scheduled for surgery to remove the tissue and have it biopsied on March 14th. So it looks as though we will be in San Francisco for a week again soon. We are still waiting to talk with her surgeon as to what type of surgery, time, and how long she will be in the hospital.

Kyla returned to work half time in February and had two migraine headaches unexpectedly. We think that she became too tired which triggered the headaches. But because of the nature of this illness, we can't be sure. It could be that the headaches were caused by pressure from the necrosis. She says she is not nervous and would rather have it now than wait until later since her hair is not all grown back. The only bad part is that she will be back on the steroids again....she was just beginning to feel better. I admire her greatly. She has such a positive and good spirit.

Lucy and Emma have colds again. Just seems to keep going around and around. Spring can't come soon enough. Prayers.

MRI Results and Fun With Emma and Lucy

Kyla and Kelli flew to San Francisco early yesterday for her appointments today. Kyla just called to say that her MRI was clear except some bruising and scar tissue. We will hear tomorrow if she needs to go back next month or in two months. It depends on what the tumor board has to say about the scan.

She is continuing to heal and aside from the usual side effects from the Decadron (weight gain, joint pain, etc.) is doing well. Her hair is growing back but she says not fast enough for her. Unless things change, she plans on returning to work the first of February.

Dave and I kept Lucy and Emma Monday through about noon yesterday. Both girls were very good but sure keep us running. I had to have a tea party with Emma on the floor and of course Lucy just wants to be on the go constantly so not much else gets done. Sometimes I wonder how I did this with four kids......

Kyla, Lucy and  Emma on Christmas day

Jill, Wade and Byron on Christmas day

Emmy decorating Christmas cookies with Gram

Little Christmas girl, Lucy

Byron decked out to go see Auntie Kyla in the hospital

Hard to believe there is three months difference in age

Lucy with her usual big smile

Emmy trying to maintain the wriggling Byron and Lucy for a picture

A New Year and Update on Surgery and Treatment

We arrived in San Francisco on December 26th and stayed in The Millwood Inn and Suites close to the SF airport. The staff at the motel were very helpful, the price was reasonable and the rooms were clean and comfortable. I would highly recommend this place. Plus it was just a hop on the freeway to go to UCSF....took about 15 minutes especially with Wade driving like a true Californian! Thanks Wade.

Kyla checked in to the hospital at 10:00 and her surgery took place at noon. It lasted until 7:00 p.m. and they were able to place the cathetars for the treatment at the same time. She was pretty sick in the ICU from the anesthesia but the next day began to feel a little better. They moved her to a shared room on the neuro floor that afternoon and began the infusion. Jill, Kelli and I took turns staying with her in the room at nights and other than not much sleep and the boredom of being confined for four days, she did well. The cathetars were removed on Sunday afternoon, the 1st and we checked her out on Monday, the 2nd and drove home. She is now home recuperating and beginning to be very tired of being housebound. That is a good sign that she is feeling better. Kelli, Jill and I are taking turns watching the girls during the days and Jed keeps Lucy at night. Kyla will be going back to SF on the 24th for an MRI and a check-up. She is also slowly being weaned off of Decadron and hopes to be back to work the first part of February.

Thank you to everyone for the prayers and good wishes as well as financial donations for her multiple trips. Words can not express how blessed we are.