A Post at Last

The last several nights I have gone to bed with sleep taking precedence over posting. I'm pretty tired tonight too, but after thirty minutes of tossing and turning I thought: I can either lie here awake here at 11:30 and not post or I could post. I thought I'd rather post.

As for Jess, she hasn't posted because she has been zapped. She finished up radiation last week. Her hair started falling out in clumps so I buzzed it. Not only does she need more help transferring (for example wheelchair to recliner) but the part she plays in transferring wears her out. She never ceases to amaze me. This is without a doubt the weakest I have ever seen her but in her weakness she shows strength. She is the strongest weak person I have ever seen, and for those of you that have seen her out and about lately with a smile on her face you will know what I mean.

She gets her stitches taken out tomorrow from her hip surgery and will see Dr. Haley in about two weeks. I think she'll have scans about 6 weeks after that.

I think a common thing people tell Jess and I is that they are amazed by us. Ha! It is we are amazed by you. How many times have we asked ourselves, how can we do this? Then a meal gets brought, our laundry is washed, money is given, and our family is prayed for and then it is just enough. Just enough to get through the day. Today for example, my car died in the middle of the road before school, so someone helped me push it to the side of the road and then jump-start it. It didn't die again until I reached our house. I looked over and saw a friend of ours praying for us in her car outside of our house like she is in the habit of doing. It gave me a visual of all the people praying for us and supporting us and I thought I can do this (my car's fixed now thank you Cornerstone Automotive).

Let me leave you with a story about Jadyn this past week. We were driving back from soccer practice and she started asking me about all the cold places people live at. The reason she was asking this is that the heat in Texas even this late in September is African hot (my apologies to my cousin Kate who actually is in Africa right now and probably has a better idea of what hot really is) and she was pretty miserable since my car hadn't cooled down from the a/c yet. When I tried telling her that it's not pleasant being really cold either, Jadyn turned to me and said, "If it's cold, all you have to do is drink hot cocoa."

I'm home!

Well,

I was able to make it home this evening! As an amazing blessing, my pain is well under control.  I was able to have two tests this morning ruling out any blood clots (my left leg is swollen, but just from surgery) and low blood count (blood counts were up today).  That paved a clear way for all my doctor's to sign off on a trip home, just in time for my birthday and also just in time for one momma who sure missed her girls.  A list of blessings...

1. My nurse, Linda called on Tuesday just to check to see if I was okay, prompting the x-ray

2.  My Bible study group prayed over me for quite some time Tuesday morning, not planned but prompted by the Holy Spirit heard by our leader Kara

3.  My friend Shelley was able to take me to the doctor right away

4.  I originally went right to radiation, but was told the wise choice would be to get the x-ray from a persistent Dr. Spangler

5.  When we got back in the car, and I just wanted to go home; Shelley insisted that we were going to get the x-ray!

6.  Shelley orchestrated Alyson picking up the girls as we were not going to be able to pick them up on time

7. Shelley's Megan was wonderful during our multiple doctor's visits

8.  I had three wonderful x-ray techs; one of whom held my leg in the air and stayed by the table wearing a smock so I would not be in pain

9.  One tech told me right away it was indeed broken

10.  Opon hearing of the break, I spoke right away with Dr. Spangler, who spoke right away with Dr. Starr (orthopedic surgeon) who right away sent two of his interns and his RN to where I was in the x-ray clinic

11.  Those 3 spent the better part of an hour talking with me about my history and asking questions

12. I called Jake and my mom and aunt Sandy to see who could come to me; Sandy, who is never in Dallas WAS, and was only 3 miles away!

13.  As soon as Sandy got to the clinic, the intern recognized that her badge read Trinity Valley, his alma mater...an instant connection.

14.  My mom and dad were able to meet us within an hour too.

15.  Sandy was able to talk with Dr. Zane for a while about Trinity and then later about getting only one of one three private rooms on the floor at the hospital.

16.  The doctors told me that I need the same surgery I had originally had on my right leg for stabilization.  They were booked for two days, but Friday looked good. I asked what about that night...

17.  I had surgery at 1:00 that morning by one of the top hip surgeons in the country, who trained my amazing doctor Starr.

18.  Jake was brought up to the hospital after his school's open house that he was able to attend by our pastor Jason (Grace Covenant Church).  Jason stayed for the entire surgery and took Jake home at 6:30 that morning.

19.  Jake was able to not miss one day of school (albeit tired:)

20.  I experienced immediate relief the next day and my pain was well managed

21.  I was able to have someone with me the whole rest of the following day (Sandy, Mom, Dad, Karen from Grace Covenant Church, Garett, Ashley and Memaw)

22.  The girls were well taken care of by grandparents, aunts, cousins and friends from Tuesday-Thursday leaving them with such fun, and a mom who was not anxious

23.  Karen knit me a precious prayer shawl and showed me such love

24. Today, I had several surprise visitors for my birthday (Kara and Leann with a birthday basket complete with cookies, Lisa with a so soft and warm blanket, Jessica and Wendy who brought me a handmade canvas about God's new mercies each morning and took all my clothes home with them along with the biggest flower arrangement I have ever seen from my grandparents and aunts (picture to follow soon), Becky with REAL Sprinkles cupcakes, and Jake to pick me up (after Jeff dropped him off having even canceled a meeting)). Whew!

25.  Two test results mentioned earlier that made it possible for me to come home

26.  Amazing nurses every day at the hospital

27. Doctors who came to see me at literally every beck and call and random question (this happened several times!)

28.  A safe drive home

29.  Running girls out to my car for kisses and hugs!!!!!

30.  A clean house

31.  Dinner from Pei Wei from sweet Kari along with a refrigerator full of groceries she picked up that morning that Alyson helped deliver.

32.  Dinner, presents and cards, and calls from my sweet family!!!!!!!!

33. Resting at HOME!!!

34. Pain FREE!!!!!

35.  The prayers of so many and the peace that surpasses all understanding!!!!!

And, these are only what I can recall ever so easily, I know there were more.

Thank you from the bottom of my heart for you and for a God that freely pours out His blessings and for bringing a peace I knew would come.

Love to you all,

Jess 

  

Pain Under Control

Jessa's pain is finally under control today. Not only is this a huge blessing but it brings her closer to being able to go home. Jess turns 33 tomorrow and coming home would be a great birthday present for her.

No Problems with Surgery

They finished surgery about fourty-five minutes ago. The surgery took a little bit longer because of the tumors in her leg. The cancer had made the bone extra soft. They said they would keep Jess at least a couple of days to manage her pain. She's in the recovery room but I'm hoping to see her in a few minutes.

No Problems with Surgery

They finished surgery about fourty-five minutes ago. The surgery took a little bit longer because of the tumors in her leg. The cancer had made the bone extra soft. They said they would keep Jess at least a couple of days to manage her pain. She's in the recovery room but I'm hoping to see her in a few minutes.

Hip Surgery

Yesterday when Jess was transferring from her wheelchair to a table for radiation she heard a loud pop and felt pain in her hip. I think the pain would have been worse but she had not been able to feel her legs. The pain got steadily worse. This morning Linda, Dr. Haley's nurse, called this morning just to ask Jess was doing. Consequently, Jess got x-rays which showed a broken left hip. They transferred her to Parkland and Dr. Reinhart will put a rod and pins in her hip and femur sometime this early morning.

Jess is Home

Jess got to go home about 1:00 today. Even though she has not been able to walk, she had previously been able to transfer by herself. Now that her lower half is paralyzed she needs help. However, she is determined and her upper body is strong, so I think that she will quickly be able to do more on her own. She already surprised at least one nurse. Last night she wanted to see if she could sit up, so she did then she scooted herself back until she was able to lay down. Her nurse said that she had never seen anyone with as little lower body function as she has be able to do that so quickly; she added that people with much more mobility than her couldn't do what she just did. The plan is to continue brain radiation tomorrow and to continue praying. She can already move her toes more today than yesterday.

update

Jess had an MRI as well as a CT scan. What the scans show is there is very little space for her spinal cord in her L1 vetebrate. A neurosurgeon came in and said that surgery would do more harm than good. He also said that her spinal cord was not injured during the surgery but rather during transferring Jess and happened because of the problem at L1. The plan right now is for Jess to go home tomorrow and to still have brain radiation on Monday. Right now she can move her toes but not her legs. Keep us in your prayers.

Possible complication

Jess called me an hour ago and told me she was feeling only a numb tingly feeling in her legs. It could be very serious indicating paralysis, but it could be also could be temporary if it is a result of one of the medicines in her pain pump. In the latter case, it would be because one of the medicines works like an asthetic and if that is the case that medicine can simply replaced. Right now I am at the hospital waiting for Jess to get back from a CT scan. Please pray that it is somerthing reversible and easilt fixable.

Dr.Bruel the hero

Jessa's surgery was originally going to be yesterday, but she was able to move it to today at 1. That meant she was able to celebrate Katelyn's birthday from a PF Chang's instead of a hospital. Today Jess had her fifth radiation on her brain at 10 and then was here at Zale at 11. Jess got admitted, had labs drawn, filled out paperwork,etc.by 12:30, but her surgery got delayed until 3:00. A nurse just called the waiting room and said that the surgery took longer than expected because of the tumors in her back but Dr.Bruel the hero persevered and got the line flowing from the pump into her spine. We were very relieved especially because Jess has been in so much pain today. We expect to talk to Dr. Bruel soon and thank you for your prayers.

Zapping updates

A few new things to update on... 

First, today marked day 2 or 10 for what I will now just call WBR (Whole Brain Radiation).  Yesterday, was a little hard.  The first time always takes a few extra minutes on the table for x-ray preps which means more time flat on my back.  My radiation oncologist said my vertebrae are compressing and causing the severe pain. I was able to get the pain "lollipops" that push fentanyl right into my body.  I did like they said and sucked on it 15 minutes before my treatment.  I did not think it was enough time, so today I tried 45 minutes.  It was better.  It more makes me tired and a little woozy.  I also had less time on the table as they were ready to go and did not need the prep work.  I am hoping each day gets easier until I get my pain pump, which is the next update.

My pain pump procedure (say that three times fast) will be this Friday at 1:00 (not Thursday).  Katelyn is turning 14 on Thursday and it was really important to her that I try to not be in the hospital for her day.  I am thrilled it worked out!  I will still stay in the hospital for a day, meaning I will check out Saturday.

So many of you are praying specifically for the WBR at the exact time. As that seems to change by the day, I want to tell you that Wednesday, I will be there at 2:15; Thursday at 1:30 and Friday I will go at 10:00.  I know that God hears our prayers any time but I am comforted by your many prayers right when I need them. 

Today, I was wondering why I worry when God clearly spoke to me as I read out of 1 Peter 5:6-7   "Humble yourselves, therefore, under God's mighty hand, that he may lift you up in due time.  Cast all your anxiety on him for he cares for you."  God provides for us in practical ways like money for groceries, and in fun ways like someone giving me dresses I can easily wear in my wheelchair.  We have received the blessing of bountiful meals, and the extraordinary blessing of money earmarked to spend on a vacation with my family.  We receive from people we know, from people we don't know, from those wishing to be anonymous, from close friends.  God loves to care for us and he loves to use to others to make that happen.  And the verse I read today was perfect.  He lifts me up; I cast my worry on him.  I know where my provision comes from, my Jehovah Jireh (The Lord will provide).  My desire is to humbly say thank you.  Thank you to the Lord for being my provision and for you for being God's hands in making His work happen.   

From one blessed mom,

Jess

This week...

Hi all! 

Katelyn played in a volleyball tournament this weekend and played great! I am so proud of her making the 8th grade team for her school.  The 8th grade team (22 girls) is about half of the size of the 7th grade team.  Here is a picture with most of the team in it.  She is #9 on the bottom row right in the middle.  

Health wise, I have a lot going on in the coming weeks.  We are in the midst of preparing the logistics of going into Dallas for 10 days.  I start whole-brain radiation treatment Monday. I will have 10 treatments (Monday-Friday; Monday-Friday).  Last Friday, I had my mold made of my face to keep my head in the same position and to line up properly with the machines.  My biggest worry is lying down, as my lower back is what is causing me the most pain right now.  Side effects are hair loss :( and fatigue and nausea.  However, my side effects from the brain tumors should lessen: headaches, numbness, neck pain, and nausea.    

On the plan now, also, is the implanting of a pain pump this Thursday.  I will have the procedure late in the afternoon and will have to stay just overnight in the ICU to make sure all is working properly as it involves the tube going into my spine.  If there are no surprises, I will return home Friday afternoon.  I still have some questions about the pump, but what I know is that it will be filled every few months in the office, and I will not have direct control over it, as it will just pump at a continuous rate.  I am hopeful this will extremely help this back pain.   

Until Thursday, I have been given a prescription for pain relief that is (supposedly) instant relief.  It actually looks like a lollipop and I am to hold it on my checks until it dissolves!  This medicine is to hold me over until my pain pump can be implanted.  I feel like such a baby, but I instantly cry when I am flat on my back, and when I sit up, I am instantly fine.  Either way, I am glad I only have to stay on the table for a few minutes.  I use my old Lamaze breathing techniques and pray a lot.  I would covet your prayers tomorrow at 2:15.  I am not sure of my times for radiation the rest of the week, but I will definitely let you know!! 

I have been blessed by all of you in so many ways.

Much love,

Jess

A Big Thank You!

A big thank you to all who have been praying for our family. Please keep praying not only for Jessa's health but for us to deal with this crisis in a way that brings honor to God. Thank you for your response. I just get a glimmer of it. Like when I got an email asking if there was anything else to sign up for on LHH (Lotsa Helping Hands), and I though of course there is I just put stuff on there, but when I check everything is already taken care of. Or how about when I went to Katelyn's volleyball game on Wednesday and found out that someone is selling the "Journey with Jessica" t-shirts in a boutique in Fort Worth. The best thing though is looking over Jess smiling right now and realize that someone is praying for her to be happy. Tomorrow morning I am going to Grace Covenant Church (the small church just before Grace Prep on the access road) to join some people who are praying for Jess. They fasted today and are praying for her from 7-8 in the morning. You of course are invited, that is if you live close enough and you like me are crazy enough to be up past 11 or even crazier early enough on Saturday to read this. I think they are doing the same thing next week though. Anyway, thank you for taking time out of your day to read this and may God richly bless you.

Dr.Spangler

Jess, and I just got back from talking with Dr. Spangler. She is going to start radiation on Monday. They are going to do whole brain radiation and the top of her spine. Today she got fitted with a mesh face mask that keeps her head from moving. Also Dr. Bruel is looking at different pain management options because she'll need to be on her back for radiation which is very painful for her right now.

Scan Update

Dr. Haley (Jessica's oncologist) and Dr. Spangler (her radiologist) personally called Jess this afternoon with the the scan results. I'm pretty sure its the fastest we've ever gotten results and we very much appreciated the personal phone call. Unfortunately, it was bad news. The bottom line is that the cancer has spread to her brain, and the best way to treat it is with radiation. Jess and I go tomorrow morning to meet with Dr. Spangler and to get everything set up to start radiation. We have never been through this before, so we have a lot of questions. Hopefully, those will be answered tomorrow. We are very encouraged that there is something to do and that her doctors are working on a plan. God's peace again sustains us. Thank you for your prayers and offers for help. When we discover our needs, we will post them on lotsahelpinghands.com We haven't had a need to use it this summer but plan on using it quite a bit in the weeks to come. If you would like to get on the site but haven't yet, send an email your name to kaylorhelpinghands@yahoo.com

What can you do? Pray.

First of all thank you for following our blog-- it means so much to Jess and I that people check in on us. Second, before I get into how Jess is doing let me say that we are well stocked on meals, kid transportation, and friends staying with Jess while I am at work. I can think of only one thing we need. What we need more of is prayer.

The last three days or so Jess has been in a lot of pain. Thankfully, we went to see her pain doctor today, Dr. Bruel. Jess has been able to do so much more on her own lately and he felt that increase in activity has irritated the nerves. He upped the dosage of the pain medicine that helps with nerve pain, Lyrica.

The more worrisome problem however has been Jessa's face. The left side of her face started to swell over the weekend. The swelling has since gone down somewhat but it's now numb from her lower lip down to her chin. Dr. Haley (and Dr. Bruel agreed) that she should have an MRI on her brain soon. So we did: this afternoon at 4 PM. Now, we have to wait for the results.

Now, please don't freak out but pray. There is a verse I like: "Do not be anxious about anything, but by prayer and petition present your requests to God." I'm going to take my advice too because frankly I'm worried, but worry creates ulcers and prayer creates action!

One quick Bryn story. We put up Bryn's presents from her birthday in April in the closet and she gets to get them one at a time on Fridays. One
Friday I had to remind her that she could pick out a present that day. She took a long look at the top of the closet where the presents are kept. Then she asked me in all seriousness, "Dad, I can do the picking, but can you do the outing?"