The View

Bryn had a great time at school today. She was very cute as a Scarecrow and I especially liked her singing her Scarecrow song with all of the other kindergartners. I was very proud of Jadyn; she wasn't ready to go back to school but she went with me to hear Bryn sing. Jess always went to all of the kids' functions at school whereas I just went to the most important ones. I will be at their functions as much as I can now because as someone at the Viewing pointed out I have big shoes to fill. I feel like I am missing half of myself without Jess, but need to be twice the person. I am so thankful that each of my girls has her own circle of support in addition to our extended family here. I am glad I don't have to raise them on my own and that lots of people will help me look after them.

Jadyn and I went to see Jess on our own about 2:30. I was very thankful for just the two of us to be there before anyone else got there. It was hard for her to see her mommy, but I was glad I took her at the same time realizing it would have been too hard for Bryn. I didn't take either of them to the Viewing tonight, instead the Yikes went Trick-or-Treating with our Pastor Jason and his family tonight. They had a great time but like me are exhausted. Katelyn went with me but rather than stay the whole time, she was able to leave to go a Halloween party at a friend's house.
I met three of her teachers tonight and was so impressed by them. All three of them possess a quality I can only define as "more than a teacher."

I liked talking to people at the viewing tonight because I got here what Jess meant to them and to hear brief stories about her. It amazes me how Jess has really effected our whole community and beyond. Jessa thought of herself as an ordinary person with an amazing faith but ended up being extraordinary. I also thought it was pretty cool that so many showed up in support of the members of our extended family. Before tonight I did not realize that so many of them have had great support as they journeyed with Jessica.

I heard several people telling stories about our wedding day. So much happened it will go on several posts, but tonight I will at least tell you about how I almost didn't make it. It was a bitter cold day that would soon turn into ice storms. Nick Chuquin, my best man at our wedding drove me to the wedding. I had a Mitsubishi Eclipse at the time and it started acting funny. The radio started cutting in out and then the interior lights dimmed and then went out. That's when my alternator went out and my car died on the side of the road. It was before the days of everyone having cell phones so we decided to walk to the nearest gas station to call the church. I imagined Jess sarcastically saying, "Sure, your car broke down..." We might not have made it on-time if it hadn't been for an eagle-eyed Aunt Sandy. She spotted us on the way to the church and picked us up. I made the mistake of joking that I needed to find Jessica's wedding ring because I had dropped it. It was a mistake because of the many retellings of this story, some people have come to believe I actually did drop the ring but was able to find it. Tomorrow I will tell what happened to Jessica on the way to our wedding.

Wearing Pink

Traditional funeral attire is fine for tomorrow. However, I know Jess would have approved of wearing pink (including the Journey with Jessica t-shirt). I know a lot of people have been thinking about doing this, but were unsure if it would be alright. Well, I'm giving you my permission and blessing.

The Day After

Today wasn't as bad as it could have been. I think it really helped that every step I took today someone took with me. The hardest thing today was going to the cemetery to do paper work, see the place where Jess will be buried, and pay for the burial. I felt like I had bought a plane ticket and then gotten on the wrong flight.

Katelyn had a lot of friends come and see her after they got out of school today. I loved hearing how Boles's administration, counselors, and teachers (like Coach Go) supported a grieving school.

The comments on this blog have been amazing. Despite the fact that we may have never met them or known them well, you can tell they really did know Jessica. As for those of you that face-to-face gotten to know Jessica, thank you for being inspirational and we love you!

Bryn is going to school tomorrow because she wants to dress up as a scarecrow since it's Halloween. Dressing up as scarecrows is a Wood Elementary kindergarten tradition. I am very nervous for her, but I know her teacher Mrs. Maurer will take excellent care of her.

After Jess said yes to marrying me we had to choose a minister. After a lot of discussion we chose someone that meant a lot to us, Barbara who was in charge of a ministry on the UTA campus (The Wesley for those of you who went to UTA). Unbelievably, Barbara was soon diagnosed with breast cancer and underwent chemotherapy. Even while undergoing treatment, she still chose to do our wedding. We lost touch with her, but the last I heard she was doing alright and had even gotten a big promotion.

In Lieu of Flowers

Jess started a ministry to kids in Arlington several years ago which is now called Weekend Backpacks. Kids that get free lunches at school during the weekend get a backpack filled with food on Friday and return it empty to school the next week to be filled up again. Jessa loved kids and would want money to be given to this worthy cause in lieu of flowers. You can make out checks to Weekend Backpacks and sent to Weekend Backpacks c/o Lake Arlington Baptist Church 2912 Little Rd., Arlington, TX 76016. We have also set up an educational fund for the girls. Checks made out to Kaylor Children's Education Fund can be sent to Affiliated Bank 2326 W Pleasant Ridge Rd. Arlington, TX 76015.

Times

We will receive friends from 5-8 PM Friday at Wade Funeral Home 4140 W. Pioneer Parkway in Arlington. The graveside service will be 10:30 AM Saturday at Greenwood Memorial Park in Fort Worth (it's not closed). The memorial service will be at 2PM Saturday Lake Arlington Baptist Church 2912 Little Road in Arlington.

Time

Jessa's nurse woke me up at 3:30 this morning to tell me drastic changes were happening to her breathing, pulse rate, and skin color. Our family got here before the girls woke up. I talked to Katelyn first, then Jadyn and Bryn preparing them for the day to come. Eleven and half hours later Jessa went to be with the Lord. We mourn her passing even as we envy her for getting to Jesus first. We also still celebrated Jadyn's birthday. By leaving us today, Jess made sure that our family will celebrate every year on October 29th. Jadyn opened presents. We ate cake. We played games at Chuck E. Cheese's. When Jadyn looks back on today she will not only remember a day when she cried harder and longer than she has ever cried along with her two sisters and the rest of her family, but she will also remember a day of gifts and happiness.

Jessica was determined to glorify God using her life as an example. She did this as a mother sacrificing her time. Until she was too sick to go, her three children never knew what it was like not to have a mother at their school and sporting events. She supported her kids like roots support a tree. She did this as a wife by sacrificing her need to be always right, which she usually was. Her friends and family members loved her for the beautiful person she was. Many knew God because she knew Him.

I proposed to Jess on my birthday. I wrapped up the box with the diamond ring in birthday paper. Then I packed a picnic dinner. I took Jess to River Legacy Park where we ate on a blanket. Then I opened my presents, except for one. When I asked Jess to open it she looked at me strangely. At my insistence she finally opened it. The thing was the diamond ring really was a present to me because having her as a wife for almost ten years is the most precious gift I have ever gotten.

Rose Garden

The roses started coming about noon today. Then they kept coming. I joked with someone that I didn't get the memo about the roses. Then she said, "Oh really? The memo's in my car, do you want to read it?" It turns out Teresa Cook who works with my mother-in-love Judy really did send out a memo to try and fill our house with pink roses. Her goal was to reach one hundred roses a few roses at a time. There is now a garden of roses at our house that stretches around the living room and spills into the kitchen. There are hundreds of them!

I have a few prayer points for you tonight. For my memory to be better under stress. As Bryn said this week, "My daddy has a bad rememory." For Katelyn, that she still be able to be a kid even as she has added responsibilities as the older sister. Bryn has had some anxiety leaving me lately (like when she goes to school); please pray that she not imagine anything bad happening to me too. You can pray for Jess to be peaceful and comfortable. I'm sure Jess was listening today to people talking to her but wasn't able to show it at all today. Finally, it's Jadyn's birthday tomorrow and I want her to feel like a million bucks. She is very excited about her birthday and has been counting down the days for weeks. You can pray for the tons of other family we have too-- this week has been hard on all of us.

So what did her dad in Portland say? He started off saying the right things. I had never met him before, but I had a really good conversation with him (even though I was nervous) When I asked for permission to ask Jess to marry me, he said yes. That was good too. Then he said the wrong thing; not to me but to Jess. He called her up and told her congratulations. When she talked to me about it, I was somehow able to recover from the shock and convince her that her dad was simply confused. I also asked her step-dad for his permission too this time with no bean spillage. Tomorrow I will tell you how I proposed to her.

Roses

First Day on FMLA

Today was my first day on FMLA and even though the fundraiser and the Young Boles volleyball and football games (thank you!) is going to cover my time off it felt just plain weird.

This weekend Aunt Sandy participated in the Silver Spurs event to raise money for cancer research. She came in 2nd place!

I keep thinking the next day is going to be easier, but that hasn't been the case. It's not a matter of feeling more loved or supported because I certainly feel that; it's that I can't get used to Jessa's current condition. It still pains me when we have to turn her. I still miss making decisions with her (and boy have I had to make a lot of decisions lately). Each word she tries to say and each flutter of her eyes is still precious. Today we could really tell that Jess was listening to what we were saying. She even said a few things to Aunt Pam.

Today I went to a funeral home to decide on some things that I didn't want to have to do today, but I'm really not going to want to do later. I asked my friend Kyle to go with me. Kyle lost his wife to cancer just before Jessa was diagnosed, and he has been a great friend ever since he called me up a few weeks after his wife passed so that he could help me through the same struggles he went through. I was very grateful to him and also to Amy Wade at Wade funeral home. Nobody wants to go to a funeral home but if they do they should have a person like Amy helping them and a person like Kyle to go with them.

One time when Jess and I took Katelyn to Burger King I was trying to encourage her to eat her food before she ran and played on the playground. I pretended her french fries were alive and as she ate them I pretended I was the fries by saying things like "Don't eat me. Not the teeth. My brother tastes better. Oh no. Etc." Katelyn laughed and laughed. She also got more excited. Finally, the excitement built up until she screamed at the top of her lungs at one of her french fries, "I'm going to eat your mother!" Tomorrow I will tell you what her dad in Portland shouldn't have said when I asked for Jessa's hand in marriage.

Two more days to Jadyn's 7th birthday.

Peaceful Sleep

Jess slept very peacefully today. I know how many of you have been praying for that and I appreciate it. Really the only time she showed any discomfort was when she had be rolled so we could change her gown and sheets. One of the cool things that changed is that she now takes her pain medicine totally in drops (the methadone was a pill) which really helps since she is having trouble swallowing.

Today Bryn ran up to someone who was visiting our house to drop off a meal. When Bryn got to her she realized it wasn't who she thought she was. She said "Hello... (long pause)... people." Then turned and ran back into the house.

When I first met Katelyn, Jess was picking her up from preschool. The first thing I noticed about her was her hair. Katelyn has naturally curly hair (which she now flat irons) and her hair was cut to her chin level. She looked like Shirley Temple. Jess was relieved that Katelyn didn't crawl to her on all fours and act like a puppy which Katelyn had been in the habit of doing when she picked her up. I don't know why-- three year-olds are goofy like that. Jess introduced me as mommy's friend, so that is what she called me for a long time until she called me Jake and then of course Dad and sometimes Daddy. Tomorrow I will tell of you of what happened when Jess and I took her to Burger King and of the ensuing embarrassing then but funny now story.

Visit from Dr. Capper

Dr. Capper visited last night for about an hour. He gave me several tips for caring for Jess now, but he also was interested in who she was. I think every person should have a job that they enjoy doing and seems a perfect fit for them and I could tell that doing hospice is for him what teaching junior high is for me.

This morning she said a couple of things that didn't make sense but she hasn't said anything since then, although her eyes have fluttered open a couple of times. She has done very little eating or drinking today. I think realistically Jess will be coming home to heaven soon, but God is also not limited to the ordinary and I still pray for her healing. However, it has been enough for her to be with us today. I am grateful for hospice care around the clock now. I am grateful that all of our needs have been met and that so many people love my wife and us.

After Jess and I had been dating a few weeks, I noticed that she had said I need to get home now to my daughter. I thought this kind of like saying I can't go out with you tonight because I need to wash my hair, so one night on the phone after she told me she needed to let me go because she needed to get back to her daughter, I told her that the joke was getting old and she needed a more creative excuse. Dead silence followed. Then very clearly and slowly she explained that she really did have a daughter and with tears in her voice she told me that she would understand if I didn't see her again. I was very glad God had told me I was going to marry her because when you marry someone you marry all of them and whatever comes with them. I knew even if her daughter was a total stinker and even if I didn't feel ready to be a dad that I wasn't going to stop dating her and I told her that. Of course her daughter is now our wonderful, precious daughter whom I adopted last year. Tomorrow I will tell you about the first time I met Katelyn.

Continuous Care

Jessa' sister and brother are in town. It was really pretty cool because Jess has been out of it all day, but when she saw them her face lit up and she called them by name.

The good news is that even with the switching over of pain mains, her pain has still been managed. The bad news is that since Jessa's incoherence and sleepiness is still present we know that it is due to brain tumors and not a side effect of medicine. Starting tomorrow, she will start have an LVN caring for her round the clock.

So what did God tell me about Jess? Very early on He told me that I would marry her. When I told Jess that she wasn't so certain, after all we had barely started dating. Jess and I liked each other but if God hadn't said something I wouldn't have thought of a lifetime commitment then. Tomorrow I will tell you why it is so important that I know that because it turned out Jess wasn't joking about something.

Letters to the Girls Via Facebook

It's very important to Jess that our girls remember her. One tool for this is going to be a group on Facebook. If you have a story about Jess or a photo, please post them at: http://www.facebook.com/group.php?gid=44264882312. If you don't have a Facebook account, it doesn't cost anything. You will need to join Facebook to post though, and you will also need to join the group "Letters." A friend of mine, Mark, is going to compile the comments and photos and turn them into a book.

I'll still post my nightly update later.

A Hard Day

Today was a hard day. If you read my earlier post from earlier today, you know that Jess has been having nightmares. One cool thing-- when Jessa awoke from a nightmare while Kathy her nurse was here, Kathy immediately said we need to pray for that. I like a nurse who will look at the spiritual as well as the physical. As much as medicine has been a blessing there are just some things it can't fix. Jessa's color has been better and she eaten some (although she did throw up the little bit she had for dinner). Jess has also been out of it for a lot of the day, but she was definitely better today with understanding what was going on and who people were.

The girls still give her hugs and kisses no matter what. Jess has been insisting that she be able to do stuff today no matter how hard it is for her. She insisted on drinking from a cup without a straw which was very difficult as it is hard for her to raise her arms up (tumor in the right elbow, tumors in her broken left collar bone). Bryn handed her a card that she managed to open with difficulty. Bryn simply said, "Mommy takes longer than she used to." She said something then that made me cry. She has been barely whispering things lately so I had to lean in close. First she said, "I love you" and then she said "I love you more than I will tomorrow."

Of course with all of this suffering comes blessing. Jesus once said, "Blessed are those who mourn for they shall be comforted." For me the biggest blessing has been the number of people that love Jessica so much, a lot of them without ever having met her.

To continue with Jessa and my story together, let me tell you of our date to Sundance Square. Jess and I went to go see a movie in downtown Fort Worth in a fun area called Sundance Square. First we saw a movie, but then we didn't want the date to end so we decided to do something else. Now, earlier I had parked in the now closed down Tandy Center. I noticed that the parking booth hours ended at 10, so I figured I would get out of paying for parking since we would now be leaving past that. We decided to go to see a comedy troup called Four Day Weekend which was then performing after a play called Forever Plaid. They're much bigger now, but they were even funnier then. We laughed a lot. Jess has a sweet laugh. I have a funny one. Sometimes at my school, I will hear whole groups of kids imitating it which I think is pretty funny because how cool is a laugh that makes other people laugh. After we saw Four Day Weekend we headed back to the Tandy Center, but found an unpleasant surprise. Not only was the parking booth closed, so was the parking lot. There was one of those big wooden arms that don't come up unless you pay and of course we couldn't pay now since the booth was closed. The logical thing at that point would have been to call a cab, but that thought would only come later. Right then Jess and I thought of an idea that working together just might work. We found out that I could raise the bar up a little before it stopped. I was driving an Eclipse which not only was a really cool car, but it was also low to the ground. Working as a team I raised the bar and Jess drove the car as far to the right as possible and whew-- made it! We were jumping up and down because we had did it. Jess climbed into the passenger seat, I climbed into the driver's seat, drove the car around the corner and... there was a huge chain going across. OK we can do this Jess said. We unscrewed my antenna I held up the chain Jess barely squeaked by my foot and success! The only thing missing was Mission Impossible music. Tomorrow I will tell you what God told me about Jess.

Pray for Sweet Dreams

I'll still post later tonight, but right now I wanted to post so that you could begin praying for sweet dreams for Jess. She of course is loved, supported, and cared for; but she is having horrible dreams in which no one cares about her and everyone has forgotten her. Jess sleeps a lot so would you please pray for sweet dreams for her?

Football Game

Jess was awake more today than yesterday (which isn't saying much), but a lot of the time she imagined things that weren't real. It was unnerving because at times she would be frantic over taking the wrong medicine or something like that never happened. Thankfully though she was in very little pain today. The worse pain she felt is when the nurse's aid and I had to roll her from side to side to change her night gown and her sheets. Jessa's cousin Mandy bought some cute night gowns cut them down the back and hemmed them. The end result? She's fashionable and comfortable. I'm hoping that by tomorrow the other pain meds will be out of her system.

Jessa's family stayed with her this afternoon so I could take the Yikes to the Young-Boles football game. It was great seeing present and past students. I've only been off work three days but I miss my kiddos already. I also liked seeing people I work with-- they have been so caring and supportive of me and my family. They also continued the fund raiser for us. The Yikes had a great time: Jadyn got to see her close friend Cody, they got a funnel cake, hot cocoa, candy, and spirit sticks. It was cold but Jadyn stayed warm playing with Cody and Bryn curled up in a blanket and jacket that people lent her. At the end of the night, Julie, the teacher who organized the fund raiser, handed us a poster of our family that the staff at Young had signed. As we were walking away Bryn asked, "Daddy how come people are so nice to us?" I told her because they loved us so much. Jadyn chimed in, "It's because mommy is in so much pain. She's in more pain than anyone else in our family."

I promised I would tell you one of my least bright ideas for one our first dates. A good friend of mine was getting married and so I invited Jess to the wedding. I picked up her up at about two and she asked me what time the wedding was. I told her about six. She asked if we were going to do anything on the way. I told her I thought we would stop for a bite to eat. A little bit panicked she asked where the wedding was. I told her Texarkana, which is named for being on the Texas-Arkansas border. After she got over the shock of me not thinking things through she actually enjoyed the trip. We of course had plenty of time to talk and really enjoyed getting to know each other. Tomorrow I'll tell you of another first date to Sundance Square in Fort Worth and why finding the right parking spot should have been my top priority.

No pain but...

I got the new medicine's name wrong it's methadone (not morphone, morphone is actually a linguistic term). Also if you've just started reading the blog, the Yikes are what Jess and I call Jadyn and Bryn it's a shortened form of Younger Kaylor Kids. Katelyn and Jadyn are the Okes for Older Kaylor Kids but we don't use that term much.

Today was a good day as far as pain goes, but Jess was drowsy/incoherent 99% of the time today. We lessened both the extended morphine doses and took one of the fentanyl 50 mcg patches off and will stop both of those completely tomorrow as the methadone starts to take effect (although it takes four days to reach max effectiveness). Today was the result of too many pain meds in her system during the transition, so I'm hoping tomorrow will be better. You can pray that she will be pain free AND alert/coherent.

One of the cool things was even though Jess slept through it her women's bible study met here this morning. I had to laugh when Jess was upset that they weren't meeting when she first when in the hospital and insisted that they meet in our house even when she was still in the hospital (which they did one week).

Bryn was her typical funny self today. When some family members stopped by this evening, Bryn hid behind a chair. She whispered some stuff to me and I whispered some stuff back. Then she said, "Dad, they can't see me so they think you're talking to the floor."

Jess and I went to TGI-Friday's on one of her first dates. Jess has gorgeous brown eyes which stand out against her pale skin. I couldn't help but stare into them and she back into mine. When we got the check-- I chuckled. The waitress had drawn a big diamond ring and wrote "When's the wedding?" Right then I knew two things: people notice when you're right for one another no matter how early in a relationship and 2. I should have asked our prophetic waitress for some lottery numbers. Tomorrow, I'll write about the not-so-brilliant idea I had for a date.

From Doozy to Dozing

Jessa's pain is back under control, but it has been a doozy of a day. She woke up about two-thirty in pain. At first she thought she could make the pain go away by adjusting herself in bed. When it didn't she called me in, and I gave her some pain medicine. I slept on the couch in the living room the rest of the night waking up every hour or two to give her some more pain medicine. This morning though when Jess rolled to one side so we could switch night gowns (which is a normal thing) she found herself in incredible pain. I called nurse Kathy and she told me which medicines to give her. Her pain dropped and she slept for a bit-- but it was still too high. Now here comes the really cool part: with hospice, medicines are delivered to your door, so within hours a brand new pain medicine arrived, methadone. No trip to the ER this time! Now Jessa is sleeping without the little pain creases in her forehead she gets when she is not sleeping well. I plan on sleeping on the couch again tonight just to make sure she gets through the night OK.

So what amazing thing did Jess decide to do the first time we went out? Well, I was going home to see my mom and coming back after the Christmas break. I didn't want to leave my car in airport parking that long, but I couldn't find anyone that wanted to pick me up from the airport when my flight arrived late on... New Year's Eve. When I mentioned it to Jess, she agreed to pick me up. As Jess will tell you, I'm not a very good planner, but if I had planned my trip better Jess and I might never have started dating. Tomorrow, I will tell you about the prophecy of the waitress.

Jess Had a Better Day than the Cowboys

A big thank you goes to Natalie Dickey who redesigned the web page. I also love the picture she chose to put up top of Jess and the girls.

I should have mentioned in my last post that the reason why Jess is in the living room is so she's not isolated from the rest of the family and she can easily receive visitors. She is no longer able to get out of bed, so the living room is the best spot. Right now she is getting enough sleep, has minimal pain, and has been very alert and coherent (the pain meds aren't making her "out of it.") All three of things I know are being prayed over, so thank you.

Last night I called a friend to take the girls to church this morning while I stayed home with Jess. However, I didn't know that her mom had decided to come over this morning so I could go. I really enjoyed it, so I'm really grateful for her.

For once it was Katelyn that said something accidentally funny today. She was super excited about using her bible at church today which she has on her phone. When she was telling me all of the different versions, she said it had different languages, King James, and of course the HIV. What a difference one letter makes!

I thought I'd continue Jess and my story together. The week Jess and I went out on a date for the first time was jam-packed for me. I was about to leave for two weeks to see my mom, but I made the most of the week, having a different date every night until I left. However, all of my other dates turned out badly except for Jessa's. The most remarkable thing happened though happened because Jess offered to do something really nice, which I will tell you about tomorrow.

Saturday Scores

All three of my girls had games at the same time today. Katelyn played her third game of a B Team tournament and Jadyn and Bryn both had soccer games. I'm still coaching Jadyn's team (with lots of help from parents), so of course I went to hers. All three of them won their games (Katelyn won her first two as well), but the most exciting one was Bryn's. She scored the only goal of the match, making it as they say in Europe 1-nil. I wish I had been there of course, but she was super excited to tell me and that was pretty cool to see. I have a Yikes story that happened today. I got Jadyn and Bryn a chicken strip meal at Chick-fil-A. After they got their meal Jadyn told me she wanted a two piece instead of a one piece. At the same time Jadyn was complaining, Bryn kept asking me to read what something said. I turned my attention to Bryn and read one of Chick-fil-A's slogans, "Eat more chicken." Of course, Jadyn immediately piped up, "See dad, I told you so."

All-in-all it was a good day for Jess. Her appetite has returned and she is eating OK now. She has found that she likes the air mattress, so she is going to keep it for now. It's a little awkward for her at times being in a bed in the living room, but its worth being around her family. Right now it's very important to me to figure out a routine for Jess to fall into. I really want to find out the best time for her to catch naps during the day and then schedule visiting hours for people to come see her. That way she can feel rested and not feel like she is being a rude hostess when she falls asleep when someone is over. For right now, if you're planning on visiting please call first.

Do you know how Jess and I met? We both were majoring in English at UT Arlington and we were in the same writing class. However, we didn't have a chance to meet until our professor recommended her to be a tutor in the writing center where I was already working. My first memory of being with her was typical Jess. When we had down time, I frequently rubbed people's neck or shoulders mostly when they had headaches. Jess let me rub her shoulders but later I found it didn't feel good to her and with Jessa's delicate skin it bruised her. Did she say anything though? Of course not because as she later told me because she thought I was kind of cute.

Medical Leave

It was indeed a Christmas-like morning at our house. I think though my favorite moment this morning was of Bryn relaxing. Jessa's hospital bed was too narrow for her to snuggle up to Jess so I saw her lying in bed with Jess upside down with her body between Jessa's legs and her own legs on either side of Jessa's body. She lay like that for about twenty minutes just content to be next to her mommy.

I'm going to go on Family Medical Leave, so today was my last day at Young until I go back. I know it's the right thing to do and I will enjoy my time with Jess, but today was really hard for me. I've grown really, really attached to my kiddos this year and I will miss them. They were pretty cool today because they had a simple message for me today: we love you and don't want to lose you even for a little bit as our teacher, but we care enough about you to be glad you're going to take care of your wife. They also presented me with a binder filled with messages to me and Jess. They were really touching and I was glad I waited until I got home to read them. It was really, really hard not to cry today (I know if I had started-- I would have had a roomful of crying kids).

All the teachers and staff at my school have been incredibly supportive of me and my family. They have been truly family to me, and my family is pretty is awesome so that's saying a lot!

Jessa's first day of hospice care went really well. She likes her bed (even sans Roho mattress), loves her nurse, and her pain has been managed well. Prayer warriors are still meeting from 7-8 AM at Grace Covenant to pray for Jess on Saturday mornings. We of course appreciate all your prayers for us at all sorts of different times and in lots of different places.

She has arrived

Jess pulled in via non-emergency transport about 10:30 tonight. I thought non-emergency transport would be an ambulance without the sirens, but this was a mini-van with the back converted to hold a stretcher.

Jess is feeling very comfortable with a pain level at a four. She's already sleeping. That's good because the Roho mattress that I'm excited about her getting won't be here until tomorrow. The mattress she has now is pretty cool though it's an air mattress that shifts the air every few minutes to prevent bed sores.

The Yikes were asleep by the time Jess got home, so I know they are going to be super excited about finding her home tomorrow. I think it will be a bit like Christmas morning with their mom as their present.

I'll be up for a bit waiting for the hospice nurse to arrive, but I'm going to rest for now-- so good night.

Happy Jessica Day

Today was all about Jess.

Even though most of the students at Young have never met my wife, they were incredibly supportive of her today. I saw lots of pink shirts. I even saw some home-made shirts that boldly proclaimed they were praying for Jessica. Arms and hands soon sported pink ribbons courtesy of pink highlighters and pens. Lots of staff and teachers wore pink today too including the t-shirt Lisa designed for her. I even saw a few students wearing the shirt. By the end of the day I saw notebooks designed with messages about her and lots and lots of pink ribbons.

The volleyball game was incredible too. The volleyball game this year was about more than winning a game. Both schools coaches wore pink ribbons and all the girls on both sides wore pink ribbons in their hair. The fans on both sides wore pink ribbons and shirts. I know she was too sick to go, but it was an amazing tribute to her.

How fitting then that today we're officially with Covenant Hospice and if everything goes as planned, Jess will come home tomorrow!

Two Steps Closer to Coming Home

Before, today I had been expecting the infection doctor to say any time now that Jess would be scheduled to have her infected port taken out. Today though Jess surprised me when she said the labs came back and her port is no longer infected. She has been taking antibiotics, but the doctor had said that there was only a small chance they would work.

Also before today I was not expecting Jess to be able to get blood after she goes on hospice, but our insurance approved it. This is a big deal because Jessa's bone marrow is infected with tumors and is no longer able to do its job. Jess has had four units of blood since she has been in the hospital and two units the week prior to going in.

The last two things on the list before Jess gets to come home are 1. we need to sign with a hospice program (which I think will happen tomorrow-- I'm pretty sure I know which one but I'm going to wait to say it until the papers are finalized) and 2. the pain doctor has to make sure her pain will be under control (it was about a five or six tonight)

I appreciate your prayers.

No chemo

Dr. Haley was able to look at Jessa's CT scan today. Realizing how fragile Jess is right now, she said that chemo is not an option and she recommended hospice. Jessa's pain has been more reasonable at about a four or five. I need to pay more attention because although she is no longer on the pain pump (the PCA/ external one not the one inside), she is getting Delatid (sp?) in her IV as needed. Finally, her infected port needs to respond to antibiotics or needs to come out which of course would delay her coming home.

Not Coming Home Yet

Jess was a quite a bit of pain this morning, but did better tonight. There is still one more hospice company we want to visit with before we choose one. I don't know when Jess will be able to come home, but since it's not going to be tomorrow we still have time to figure out the best way to take care of her after she leaves the hospital. She has been on oral pain meds this weekend instead of through the IV which is an important step in her coming home, but the meds have not been able yet to keep her comfortable.

Top 10

Although we met with two hospice providers today, the only think I am sure about is that hospice is a wonderful program. For me, it was kind of like the word "radiation" before Jess had cancer-- I knew radiation helped fight cancer but I didn't have the slightest idea of how it worked. It turns out hospice is a team of people who work together to provide pain management and comfort after aggressive treatment is no longer done. There's an RN nurse, a chaplain, a doctor, a social worker, and an LVN nurse all working in conjunction with each other.

There are still important decisions to be made that I'm not sure about yet, so here's something I do know: the top ten reasons Jess is an inspiration to me:
1. She impresses everyone who meets her without trying to
2. She never ever tells me when it's time for me to leave the hospital for the night so she can get some rest
3. The thing that most scares her about dying is how it will effect the rest of us, not dying itself
4. Even though she has experienced more pain lately than most people ever will, if you ask her is she's in pain she just says she's uncomfortable
5. She still manages to look beautiful with her dark brown eyes despite being so sick
6. She is brave even when she is scared
7. She has a smile that lights up the room despite paralysis in her face and still laughs although it is hard to get a deep breath
8. She inspires doctors and nurses
9. She worries that the effects of her cancer inconvenience other people and that she is not "pulling her weight"
10. When she was on hold with 911 she asked the friend that was with her how she was doing

Comfort

This week has been my hardest week, yet I have felt comforted by many people this week. God loves to use people to do His work and He sure has allocated a lot of people to us. Just looking at the comments that have been left here (and Jess has been able to read them too) has brought a great deal of comfort. "What can I do for you?" has been an overwhelming question when I have been barely able to think straight, so thank you for so many of you that have had creative, specific things that you have done and offered to do for Jess, the kids, and me.

There a few things coming up in the next week or so: people that want to pray for us are still meeting at Grace Covenant Church in Arlington from 7-8 AM on Saturdays, Jess and I are talking to a couple of hospice providers tomorrow with the intention of bringing her home, and there is a fund raiser for us at Martin High School during the Young (my school)/Boles (Katelyn's school) volleyball game this coming Wednesday at 5:30 (Katelyn plays at 6:15).

No MRI or radiation

Jess is not going to have an MRI after all. The docs felt like they already had good information from the CT scan, and they didn't want Jess to to feel pain from getting the scan done (transferring, lying still on her back, etc.) She is also not going to have radiation done on her back. The pain relief she might have felt from radiation didn't out way the pain she would have felt from transferring and lying flat on her back.

On the plus side today Jess was much more "with it" and she was in less pain. The main reason for this is that her calcium levels in her blood are down.

Not So Good News

Welcome to the roller coaster that has become our life. An oncologist came in tonight to go over the CT scan results. There is still an MRI to come but Jess didn't feel up for it, so they will try again tomorrow. The CT showed new stuff and all of it bad. Jess has a broken collar bone because of cancer breaking down the bone. She has new tumors in her lymph nodes in her abdomen. There are new tumors in her lungs and over twenty tumors in her liver. Lab results revealed that her meta-port is infected and will probably have to be taken out and she has too much calcium floating around in her blood. That calcium is causing increased pain and Jess just took medicine last week that is supposed to keep her calcium levels down. Jess is also anemic so she probably need to get more blood. She meets with a radiation oncologist tomorrow to see what can be done radiation-wise on her lower back.

A Three

I just reread my last post and I realized that from the way I wrote it sounded like Jess has been screaming and crying most of the time instead of when her pain spikes during transfers. I'm not talking about the transfers they have done at the hospital either (they have gone smoothly) but the transfers she has been doing at home to her wheelchair, recliner, bed, etc. During those transfers, her pain peaked at a 10 up from the 6 that has become the new normal. However, they just put her on a Roho mattress tonight and the pain med adjustments are working... when I left her pain was down to a three!

Pain doc visit

A pain specialist, Dr Langsley, came to see Jess this afternoon. Jess has been in some pain despite the medicines especially when she raised the head up on the hospital bed. I think it's been much better since she has not been screaming nor crying and she has been asleep most of the time. He ordered an IV medicine that Jess can push a button when she is in pain. He also said he would try to find a doctor in Fort Worth that would has equipment for adjusting her pain pump. It would be awesome if they could figure out a way to make it where Jess is in no pain. He also said it would probably take a few days to get it under control. In the meantime Jess was wise in wanting to go to a hospital that's close to family and friends.

Admitted

The scans showed nothing surprising. However Jessa's pain cannot be managed well from home yet so she will spend the night here.

waiting on scan results

They gave Jess some pretty strong pain medicine and also some medicine to help her relax. I was especially glad for the latter because scans have typically painful for Jess lately. She made it through the scans just fine and is now sleeping. Now we're waiting on the scans. The big thing right now is they want her pain to be under control before she goes home. I have never seen Jess in as much pain as she was today, and I know she wants her pain to be manageable before she comes home. Keep up the prayers.

Ambulance Ride

Jess and I are in route to Harris Methodist Downtown via ambulance. This morning her lower back pain was off the scale so Dr.Haley advised us to check into a hospital. Please keep us in your prayers.

Slowly but surely

Okay, medical update first...

I have been pretty busy since my birthday, when I came home from the hospital.  Lots of recuperation, rest and more doctor's appointments.  I have seen my oncologist (Dr. Haley) who thought I needed 2 units of blood from a little anemia.  I have felt more energy after that infusion.  I had a very productive appointment with my rehab doctor (Dr. Mendez).  She gave me a prescription for a hospital bed, which I ordered and they delivered the same day! I have had one night on it, and I was so happy to be on a bed with my legs raised and head up higher.  I hope I can even sleep-in a little bit tomorrow! Then, the doctor ordered boot to help with pressure relief on my ankles.  AND, she ordered home health to come evaluate me for PT/OT to see how they can help with mobility around the house.  

But, the best thing happened when I told her I have been experiencing more back pain the last few days.  She, right then, sent a text to my pain management doctor (Dr. Bruel) even though I told her I had an appointment with him in a week.  Well, Dr. Bruel said I could come in the next day.  I was grateful, but that meant another trip into Dallas, which I had already made Mon-Wed. of that week.  She text him again to see if he had anything that day.  It turned out he was teaching that day, but was going to come RIGHT over to help me in her office!! What?!? Who does that?? I was SO grateful for him.  My pain is better and I was Dallas-free the last part of this week! I am so blessed with a team of doctors that help me so much.  

I am still fighting a fever (on antibiotics) and my mobility is low.  I am learning to take medicine when I need it.  My throat problems are better each day.  Today, I even ate some pretty normal foods, cereal and chicken noodle soup, with relative ease. I am learning new strategies every day. I am so grateful for pain management, a bed and so much help from family and friends.

The girls are all doing well.  Our thoughts are filled with Halloween costumes and Jadyn's birthday.  Katelyn's volleyball team is undefeated.  Jadyn loves her daddy coaching soccer and Bryn has fun being a Groovy Girl on her Kindergarten soccer team.  We are blessed with great friends and teachers for all three of them.  

Another super exciting thing happened to me Friday.  My sister Hope came into town with her two precious little ones, Austin and Ella! It was complete surprise to me! It was great visiting all weekend with her. And, nurse Hope was SO helpful to me as a sister and with her nursing background.  I really don't know what I would do without my brother and sister.  Garett is between careers and while he waits to be able to sub, he is able to drive my to all my doctor's appointments and transfer me (which is a lot more work for others now).  

I love ALL of my sweet family.

Two pictures of Hope's visit.  (Sorry for the lack of hair--a radiation side effect.) But, we are all smiles.

I am having memory card issues, so I will need to start taking more pictures to post for you soon!

Love,

Jess