PT Cruising

They brought Jess her brace last night after I posted last night. It's really just pieces of hard molded plastic with straps. It was really hard to put on laying down-- it will be a lot easier when she is cleared to put it on while sitting up. The PT (physical therapist) did a great job (as did Jess!) and she was able to sit up for the first time since surgery. She'll be doing PT once a day for now, but she's cruising along. We are hoping Jess will be able to move up to a room on the oncology floor today or tomorrow, but right now she is great care in ICU.

I read a post asking about how to give money. The way our community has come together has been unbelievable as well as very humbling for Jess and I as we are both joyful givers and not as good at receiving. I believe an awesome account called the Jessica Kaylor fund has been set up. I don't know much about it as some wonderful person set one set up for us while we were gone. So if you know more about it please post a comment.

Headache Problem Solved

I noticed that Wendy Casas posted that Jessa's headache might be as a result of spinal fluid loss and she nailed it: that is exactly what the doctors found (even before I checked the blog). They have kept the drain at the surgery site but have stopped the pump-- no more spinal fluid being pumped out and presto-- a happier Jess!

One thing I have learned on this San Diego segment of Our Journey with Jessica is to take one day at a time. There are several exciting possibilities in the works but they are not realities yet. I just got a phone call that the goal of raising money for a med flight home has been met. You can help by praying for total doctor support of this; a safe, uneventful trip home; and for Jess to choose the right medical facility in Dallas to go to for rehab/radiation/other medical treatment. Also in the works is for more visitors coming here to San Diego, including our three precious daughters.

God has asked a lot of us, but we are asking a lot of Him-- don't we have a big God?

One final thing: I need a computer techie person to tell me how I can download a video of Zander Curtis's baptism this Sunday so we can watch it here. I know LABC videotapes the services, so this isn't too far of a stretch. Just post a comment if you know how. Jess and I would love to see our nephew take the plunge!

Another headache :(

Jess had another headache last night-- and was sick to her stomach again. Then she had another one this afternoon. One of her oncologists here (Dr. Abidoye) sent her for a CT scan right away on her brain. The preliminary results show nothing suspicious, but I'm very impressed at how quickly he acted. We'll know the official results tomorrow. Jess is sleeping right now. It was a sad day for her as Katelyn, her mom, and her stepdad all left this afternoon. As for me I miss them already and I miss Jadyn and Bryn horribly. I have parked in the parking garage so many times now that I can't remember which level I parked on. While Katelyn was here we made up rhymes tell help us remember the correct level. For example, "Level one is so much fun. I like to run and eat a honey bun." I already miss being silly with her. She has a heart of gold too-- as we were leaving hospital parking she offered to pay the $2 (Jessa's stepdad paid for it instead). I love hearing the reports of prayer for us-- keep it up!

A Rollercoaster of a Day

Jess was in a great mood this morning-- as if having extensive surgery the night before was no big deal. Later, she got measured for a custom orthotic that will brace her back. It's very likely that she will have to wear the brace the rest of her life, but on the plus side it will help prevent other vetebrate from collapsing. A little bit after two Jess starting got a bad headache. They were able to get the pain under control, but in the meantime Jess got sick to her stomach. There was a long stretch of time this afternoon and tonight that we let Jess rest. So, while she rested, we went out to eat with Jessa's cousin(Krista), Katelyn, my mother/father in-love, my Aunt Terry and my Uncle Ron. I love my family. Then we came back and waited around a bit-- the nurse finally let us in about 8:30 and we stayed until after 10. Jess was feeling much, much better, so we ended with a high point in a rollercoaster of a day. By the way the blog posts the time in Central Time, so it's late but not as late as it posts. Thank you for your prayers and good night.

Mission Accomplished!

Dr. Coufal just came out to see us. The surgery went smoothly. Jess is going to back in her room in about twenty minutes, and I can't wait to see her. Thank you for praying, but now I have another assignment for you, pray for her recovery!

Surgery Duration

Jess went into surgery at 5:30-- she had to wait for the operating room to be available. I forgot to post on the last blog that the surgery will be about four hours. Scripps is one of the few places in the country that monitor neurological pathways when doing middle of the back surgery. I found that out today and thought that was pretty cool. Jessa's surgery will be in the T6-T10 vertebrate.

It was real boost for Jess to see Katelyn today and to read your emails. Your emails don't have to be funny but I think she really likes those ones. It's great to see her smile. I'm going to grab a quick bite to eat and then head back to the hospital. Keep praying!

Surgery Time

Jessa will be having surgery at 4 PM. Remember we are in Pacific Time, so if you live in a different time zone than California it will be later where you are. Pray for Dr. Coufal and his medical team here at Scripps.


A tired Katelyn got in last night. Her plane was making weird noises so they got everyone off before take-off and switched planes-- making her get in at 11:30 PM instead of 9:20.

Thanks for praying!

Precious Little Sleep for the Princess

Katelyn is coming in tonight, so I am at my mother-in-love's hotel where they have Internet access to update you this afternoon. Jess had a hard time sleeping last night. She felt jittery after taking her oral medicines last night, but the worse thing happened later. Her night nurse took out her IV (so she could put in a new one) but forgot to take off her blood pressure cuff. The cuff automatically takes her blood pressure every 15 minute and started squeezing her arm. Blood started squirting and it took awhile for it to stop. Needless to say Jess is very tired and the day nurse she has now has been extra careful with her today. On the plus side a nurse that knows massage came in and helped Jess to feel both comfortable and relaxed. Another plus is that Jess has really enjoyed messages sent via Scripps. The neurosurgeon talked to Jessa's nurse and said that the surgery will be Friday or Saturday. When I hear a definite time I will post it.

Feeling More Comfortable

Jess had a much better day today. She was much more comfortable (thank you prayer warriors!)-- just tired. Her neurosurgeon talked to us tonight-- he is shooting for Friday for the surgery where he will put in screws and rods to stabilize her spine. He said it would take less than two weeks for her to heal from the surgery and then she will be able to fly back, hopefully on some kind of medical flight. Emotionally this provided a big boost to Jess today-- she has been dreading sitting up for the three hour flight-- and the spinal surgery has just compounded that dread. Also providing a big boost is Katelyn coming in tomorrow night for the weekend. Jess really, really misses our daughters. Jadyn and Bryn are too young to visit Jess in ICU (the age limit is ten) so they will be enjoying a weekend of camping with friends. Jess got to talk to the Yikes (Younger Kaylor Kids) tonight which was both relieving and awesome for Jess tonight. No cell phones are allowed in ICU, but her nurse set up a phone where she could talk to them. If you would like to send a message to Jessica, you can still do so even though she has no Internet accesss. You can send a message through Scripps which will print out your message and deliver it to Jess. The web address that you will need to go to is http://www.scrippshealth.org/emailpatient.asp
The big prayer request is to pray for Jessa's upcoming surgery. Jess has such an awesome surgeon it's easy to forget that he is operating on her spine-- so pray for steady hands and success in stabilizing her spine!

Pray for Jess to be Comfortable

Jess was pretty uncomfortable today-- she couldn't get comfortable in her bed and just plain felt lousy. Please pray that she would feel better tomorrow I know that would lift her spirits. There were several things to be thankful for today. There were two new developments: 1st Jess started feeling good tingles down her legs ( I say good because before she lost the use of her legs she was feeling bad tingles that felt like her legs were going to sleep) and 2nd she was able to tell which direction the doctor was moving her toes. The oncologist came into tonight and was able to help Jess understand what was going to happen next (thank you Wendy for praying for this specifically). She was feeling aprehensive about not having a plan and he helped her feel much calmer. Here's the plan: stabilize her backbone with rods and screws. In about two weeks radiate the three problem areas in her vertebrate-- one in her neck, one in her mid-back (we found out from him that she actually has fractures in that area on vertebrae that were not taken out), and one in her lower back. They will also radiate her hip which (and I'm sorry I don't know which parts were broken) is broken in several places. In the meantime they are going to be treating her cancer systemically with hormone therapy. Hormone therapy is generally not very aggressive and usually takes awhile to have an effect, but her oncologist (actually she also has another oncologist here who is a female) wants to be treating her while Jess is healing from surgery. He said he would tell us more details about the hormone therapy tomorrow. Thank you for your prayers!!!!!!!!!

Get Her Some Boots 'Cause Her Feet Our Dancing

Just her moving her toes on just one foot would have been enough today to make it perfect. However, it became an amazing day when Jess was able to move both her feet today from side to side. Our family that is here have already given thanks that Jess did not get on the plane earlier. What if during her transfer she had permanent damage? We are also very grateful that she was able to have such a wonderful surgeon in San Diego. We now know that Jess fell because of pressure on her spinal cord which caused her legs to not work right.

I wasn't very clear when I talked to my dad about further treatment. There is no plan to treat her hip until after her spine is taken care of. Now that she has movement she will have metal inserts put in to stabilize her back. Then the doctors here will see what they can do to treat her hip and her cancer in general before we return home.

I am very grateful for my principal at my school, the parents of the kids on the soccer team I coach, for family taking care of my three darling girls, but I am especially grateful to YOU for praying. This has been a very difficult week and prayer has made all difference.

I have about a zillion other things to say but my brain has refused to keep working, so good night.

Jess Moves her Left Toes!

Thank God and thank you for your prayers!

Jess just moved the toes on her left side so God has allowed the surgery to enable her to regain some nerve functionality. When she first woke up from surgery she was not able to move anything below her waist. Her doctor said they will know soon whether she will regain feeling on her right side. It will take some time for her to regain the feeling in her legs. If Jess successfully regains feeling to a certain level then she will undergo surgery again to install metal support in her spine. The two verterbrea that had collapsed were removed during the surgery last night.

The doctor confirmed that it will be at least 10 days before Jess will be able to travel home. He also said that Jess's hip issue will not be treated in San Diego. That problem has been assigned a lower priority and is planned to be treated back in Texas through either surgery/radiation or just radiation.

Please pray for movement on Jess's right side.

In Christ,
Jim Kaylor

Jess's Surgery Went Great!

Hello Faithful Prayers.

Great news about the surgery from Jake! Dr Coufal told Jake the surgery went very well. All of the spinal tumors were removed and Dr Coufal was able to decompress Jess's spine.

The tumors were wrapped around the spinal cord and had broken through at least one vertabrea. Hence, we will have to wait and see how much if any permanent nerve damage exists. There is no time frame for that assessment just yet. Jess is still sadated and will be kept in ICU tonight. She will need to remain in the hospital in San Diego for at least 10 days to recover.

Another surgery will be required to add support to Jess's spine. Exactly what and when that will take place is also not known tonight.

Thank you all for your prayers and thank you God for your mercy. Please continue to pray for minimal nerve damage, strength, encouragement and recovery for Jess.

In Christ,
Jim Kaylor

Please Pray Now For Jess's Surgery

Hello Everyone.
This is Jim Kaylor (Jake's Dad)relaying a message and request for immediate prayer for Jess and Jake. Today Jess lost feeling in her legs. A MRI was done to help determine the problem. It was discovered that her cancer had spread to her spine and that two of her vertibrae had collasped. She was told that unless she agreed to have emergency surgery (Jess is still in San Diego) that she would be permanently paralyzed from the waist down.

Please pray for Jess and her surgeon (Dr Coufal)that the surgery is a success. The surgery is to remove the tumors on her spine and then decompress her spine. If possible they would also like to put in support for her spine. They suspect that procedure will not be possible until a future surgery.

Thank you in advance for your ferverent prayers.
In Christ,
Jim

Breaking News

First, let me thank you for praying for us whole-heartedly. Tonight I ran into two families that were already knew our situation and were already praying for us. They represent the many people who are praying.

The latest plan is for Jess to come home Saturday to have surgery in Dallas. Pray for me to make my flight early tomorrow morning, for the kids to feel secure and peaceful, and above all for as little pain as possible for Jess as Jshe makes the plane trip. Aunt Sandy will also like me to add for you to pray for a private jet for Jess!

No news yet

There is not a consensus yet among Jessa's doctors whether to fly or back home or treat her there. I tried to fly to San Diego today, but if you'll look at a weather map you'll see why I didn't. There's a big red spot over the two big airports here. Flash flooding caused one of the airports to cancel over 700 flights today.

Broken Hip

Jess spent the weekend in California with her dear Aunt Sandy. She was supposed to come back today, but fell and broke her hip. Dr. Haley had recommended that she get a pin put in in to prevent such a thing but frustratingly Jessa's orthopedic surgeon told her on Thursday that she didn't need a pin right now. The plan right now is to have scans to determine whether or not she can fly back and what treatment she'll have. I plan on keeping you updated. In other news, Jess saw a doctor in a research hospital (Mary Crowley at Baylor). He felt like she was a great canidate to try a new medicine next month. Medicines go through three phases of testing before they are approved by the FDA medicine. This medicine is a phase one drug, in fact she would be third person ever to try it. Over the last year and a half no traditional chemo medicine has been effective in slowing or preventing the cancer from growing, so we are hoping and praying that this will be one will work. If it works it will actually repair the damaged DNA in the cancer cells.

Scan results

I spent almost two hours in my oncologists office, which I don't even think I did at diagnosis. We went over all the details of the last scan and compared them to the previous scans pictures. I never felt like I was rushed or that she did not have time for my questions.  I was in the room alone with Doctor Haley for close to an hour before we called in my family.  I must have asked three times if she wanted me to get them, and she just kept saying that she would go over all of it with them again, she just wanted to go over it with me first.  I felt this great connection between patient and physician... that she wanted me to understand what she was feeling.

All to say that the scans are particularly worse. I was actually quite surprised. I am having some increased pain, which usually clues me in, but I was just quite optimistic that I would be able to stay on the not so toxic Ixempra. I was REALLY praying that was the drug for me.  I am thankful that God knows the plan way before me.  I am also thankful for the past three months of relative side effect and pain free days.  

The new "plan" is to see an orthopedic surgeon right away as the progression to my hip makes them think the risk that I could fall/break this bone is significantly greater as the bone is eaten away in several places. She thinks a solution might be a pin put in my hip to make it more secure.  Again, having something to do is hopeful.  I have actually wanted to see an orthopedic doctor for a while as my mets are only in bone.  I thought this type of specialist might have a unique perspective.  Please pray I connect with the right doctor.  I will first get a referral for a doctor at my same hospital.  But if they cannot get me in soon, I will go outside UT Southwestern to get going as soon as possible.

Step two is to transfer to another hospital, a research hospital in the area, Mary Crowley Medical Research Center. It is a center devoted to clinical trials.

My oncologist thinks there is still treatments she can do, with various chemo treatments, but she also feels like we are in a crossroads, where a new avenue could really bring better results. She said at the Crowley center, I can get, hopefully some targeted therapy that would not be available through her for a while. I just need a good treatment now, as I have had 3 poor scans in a row.  

Pain now is manageable.  Dr. Haley wants me to use my cane for extra support even if I feel like I can walk without it (in that case I am trading to a nice hot pink number!).  I am also having good success taking Alieve.  I have the ability to double my pain patch, which is a good back up.  Fortunately, I have not needed it the last few days as the other has worked fine.  

I am pretty weary emotionally right now. But, I know my faith is not worth much if I am not trusting in Him in the bad news as well as the good. I am trusting in Him, who knew about these stupid results long before I did.  I am coveting your prayers right about now!

I remember I owe you pictures.  I have had a busy day and I knew this was important to get out to you.

Take care,
Jess

Better

Thank you all for your prayers.  I am feeling better today.  It has not been a steady climb to better, but more a roller coaster. I can definitely tie it to a lot of activity and on my feet.  However, today I was able to connect with my oncologist and get some advise for pain management.  She said I could both take Alieve for the muscle pain and double my pain patch if needed.  She told me my pain did not sound metastatic in nature, which thrilled me.  I will get complete results from my PET/CT scan on Friday afternoon.  I will then hopefully get round 5 of Ixempra.  Saturday afternoon, I was able to go to the beach...yea!  I LOVED my beach-time, and it was one of the highlights of my trip.  I will try to post pictures and recap the Florida conference tomorrow, as I am pretty tired tonight.  I just wanted to give you a quick update as I have left you hanging (and praying) since Saturday.  A friend said to me that I never complain about much pain, so I must be feeling horrible!  I am not horrible, just experiencing more pain than usual.  And on some of those roller coaster days like Saturday and again Sunday night back home, I did feel pretty horrible (okay, I admit it already!!) Today was a better day and as per my mantra, I am thanking God for this moment.  Thankfully, even on hard days, I was able to thank God for you and your prayers and comments to me over the last few days; they were such an encouragement.  

Love,

Jess

Prayer today please

A super quick post today.  I am in Florida for the conference for young survivors.  I had a blast yesterday with a great first session and a fun dinner with new friends.  However, today, I feel the worst physically that I have felt in a long time.  I do a lot of walking here, so maybe I am just sore. I ache all over.  I have my cane, and pain patches, and I want to go to everything offered here this weekend.  This afternoon at the lunch break, I am supposed to go to the beach with a few women.I absolutely LOVE the beach, even when the water's cold, I just want to sit on the sand for a few minutes and take in the ocean air.  Please pray that my physical strength will hold up.  You are the biggest network of people I know, so I hope you are reading today or tomorrow!! 

Thanks so much:)

Jess