Cruising and Zooming

Jess was able to trade in her FDR chair for a sleeker model today. It is much lighter and more comfortable. Jess was able to maneuver around our house really well already (in fact better than I could push her) . The coolest thing though is that Jess is going to get a custom fit wheelchair. Every time Jess gets a new piece of medical equipment she always jokingly asks if they have it in designer colors. However, she really is going to be able to get a wheelchair in a color other than black. Hers is going to be aqua.

We are looking forward to a relaxing weekend. Jadyn and Bryn started it off right tonight when they performed Cinderella tonight (complete with multiple parts) for us. Jadyn did a great job as a director-actor.

Visit with Dr. Haley

Today Jessa's right leg started feeling better. It could be that the radiation is working, but it also could be that she has just been distracted by the leg cramps she has been getting in her tumor-free left leg. After radiation Jess was able to wheel right over to Dr. Haley. It was really nice because Dr. Haley is right next door and we didn't even have to go outside to get to her. Dr. Haley said something almost right away that made my heart drop into my stomach momentarily. She said that she wanted to talk about Jessa's lungs and liver. She wanted to let us know that there are no tumors in them! She had read the scans that the radiology oncologist had used to determine where to radiate and seen that the cancer was still confined to bone, but when she said that I was dreading that she was going to say it had spread. She also told us that Jessa's blood counts were good, no anemia right now.

She will start a new chemo medicine pending medical approval. The medicine is Sunitinib (good luck saying it-- I can't) and has not been FDA approved yet for breast cancer (though it is already approved for treatment of other types of cancer). Jess will get a Zometa infusion on June 6th to strengthen her bones. Then she will start a combo of Xoloda (chemo which she has taken before) and Sunitinib. Both of these are oral chemos, so no trip to Dallas for infusions required :)

Jess will get a new temporary wheelchair tomorrow. She calls the current one her FDR chair and it to use Jessa's word for it: cumbersome. We're hoping the new one will allow more maneuverability until she gets one that will be custom fit.

Our needs are well-covered the rest of this week!

You Can Do It

After Jess got back from radiation today, she met with the occupational therapist, whose name is Anna. She had Jess do things that she didn't think she could do. For example, she put on a sock. For you and me putting on a sock isn't a big deal. However, Jess did it by pulling the top of her pant leg bit by bit until she reached her foot all while balancing herself from a sitting position. A sitting position I might add that she reached all by herself. Sitting up by herself is something she had never done before. When all was said and done and Anna had told Jess many times that she could do it, I had look on my face that said, Wow, look what you did!"; Jess had a look on her face that said, "Wow, I'm tired."

Sandy came by tonight while Jadyn and Bryn were at mom's and went after the Yikes' room. Katelyn and she threw out tons of stuff. When Jadyn and Bryn got back they were so very thankful that they had a clean room. Bryn stood at the closet and told Sandy there was a word that described the closet but she couldn't think of it. Then she said I know it "It's organized."

Home sweet home!

Hi all!

Thank you for your prayers and support, phone calls and visits as we made the monumental switch to life at home. I had entered the lovely Scripps Memorial hospital in La Jolla, CA on March 17th (St. Patrick's Day) and I was discharged from the Zale Lisphy Rehab unit at 4:00 on May 23rd. It has been almost 2 1/2 months of being away. Coming home fills me with joy. I love watching the girls do normal things and be able to talk to them about the littlest things whenever I want to. They have been "just visiting" their mom for so long! I will say that it has been a quick transition back to life at home in that respect. Life here seems just as I left it.

Friday, I was able to see the big surprise waiting for me with a new, fabulous spa-like bathroom! It is breathtaking. Several wonderful ladies and their husbands came to do a complete makeover on our bathroom. It started with widening the door so I could get in with my wheelchair to use the shower. But, it turned into a complete room make over worthy of any HGTV show with huge tile replacing the old carpet, new paint (which meant taking down 1979 era wallpaper!) new mirror, new lighting, towels, sconces, picture frames... it is breathtaking and I love it. Thank you so much for all of you involved. I want to just stay there the whole day!

Every day home has brought its challenges, but it does seem like things are getting easier. The first day I was crying that I don't think I was ready to come home. Today, I went to church, and am sitting on the couch typing this on the computer. I am so glad Jake is more patient than I am. I think I would have put myself into time out a few times by now! We are managing fine and I know that each day home will be more and more normal, at least become our new-normal.

PT and OT will come throughout the week. Jake mentioned I will have radiation for 11 more days beginning Tuesday. Tuesday is my last day for my spine and I will have ten days for my right pelvis/leg. I am not looking forward to the long drives out to Dallas, but I remind myself that it is only 10 days and it will help in pain relief to that side, as well as freeze those tumors! I have follow-up appointments with every doctor imaginable in the coming weeks and months. I hope to see Dr. Haley Thursday or Friday to start my new chemo plan. She spoke to me last week about an oral chemo regimen that I might be able to try. I will let you know as soon as I know.

I am looking forward to seeing you all.
Love,
Jess

2nd Day Home

I am so grateful to have Jess home, and the girls of course are super excited to have her here. It has been a little hard for her to adjust to not having medical staff and facilities at her disposal, but today was easier than yesterday and I think tomorrow will be easier still. A physical therapist came today to give Jess an evaluation and she will return on Tuesday to start PT. Next week we will be making the reverse trek as Jess will get some radiation (Jess is asleep or I'd ask her what spots they're doing this time). Its been awhile since I explained radiation, so if you don't know radiation is the same technology used in an x-ray but in powerful doses. It's pretty neat because they can zero in on the tumors and zap them. Thank you for patiently waiting for me to post some stuff on the Lotsa Helping Hands site-- there will be postings on there once Jess and I realize what we will need this coming week. Thank you for your prayers!

Coming Home Today

Last night our house was packed with Jessa's "design team."   It was fun seeing our bathroom transform into something so nice.   They also got rid of the clutter in our bedroom.   We don't have cable at home, so Jess has really enjoyed watching design shows while in the hospital.    Now she gets to experience a mini-"While You Were Out" of her very own.   If it were a show, it would be called "While You Were in the Hospital for Two and Half Months."   Aunt Sandy pointed out that the last time Jess was at home was March 14th.   

I've packed up the last of Jessa's stuff while she getting radiation.   I'm hoping its timed just right and she gets to see Dr. Haley today instead of next week.   Even if she doesn't get to see her its going to be a great day-- our girls are super-dee-duper excited to have her come home today!

Surgery Went Fine

The surgery started late but no surprise there-- and lasted about two and half hours.   The T12 vertebrate was in the worst shape but Dr. Buriel said that it was no problem to fix it and restore it to its original height (it had collapsed on the top).    He was also able to strengthen the lumbar vertebrate as well.   He drilled a hole in the vertebrate, filled a balloon up to help create a cavity then filled it up with cement.  It's pretty cool because the fissures in the vertebrate get filled up with cement as well.  The only incident was one of the balloons popped.   No problem though-- the balloon is sterile and its now encased in cement.   I haven't seen her yet as she is supposed to be flat on her back for two hours in recovery afterwards.  He also said two cool things: 1) she should feel relief as early as tonight from the deep pain she has been feeling and 2) she may be able to go tomorrow.   Thanks for patiently waiting for this post!

MRI results

Jess was finally able to get the an MRI today. The good news is that it showed there is no spinal cord compression. However, it showed fractures in four vertebrate T12 and L 1,4, and 5. T12 is just below her previous surgery and the other ones are in her lower back. She's going to have surgery tomorrow afternoon at four. Dr. Buriel, a pain management doctor, will be performing the surgery. Jess says he previously worked at M.D. Anderson and has done lots of this kind of surgery before which is called kythoplasty. Jess will have general anesthesia and like the last surgery this one will be x-ray guided too. He will insert a needle and put in a balloon and then fill the area with cement. The recovery is predicted to be a quick one and she should be able to come home late this week. She'll come home to a totally redone bathroom. It already has a widened door and tile. Plus new faucets. Now the early 80s wallpaper is down and soon it will have a new coat of paint to go with the texture. She'll also get a pair of updated mirrors and new lighting. I am very grateful to the ladies that put in a ton of work today. What really touched me is when they said "Of course we're doing it. We love her."

My testimony

Sometimes the Lord impresses on me to share my testimony. Today, during my quiet time with the Lord, was one of those times.

I grew up knowing about God and Jesus. We went mostly to various Catholic churches where I attended Sunday schools and learned all the Bible stories. We later began going to mass mostly on holidays, and we always knew the true meaning of those holidays. My mom would sometimes take us to other churches. I was searching for something, I just did not know what.

Fast forward to age 21. My family was moving back to Arlington from El Paso, TX. I was at a pretty low point, not sure what I wanted to do with my life. But, I knew I had a precious 10 month old that needed more from me too. God was leading me to Arlington. He knew the plan.

Not long after moving back home (I lived in Arlington from age 2-12) my mom and I started to go the church that my aunt went to, Lake Arlington Baptist Church. Here, I heard almost ever week about a God that wants a relationship with me. I had not ever heard that before. I had heard about Moses, and Adam and Eve and Jonah. I had even heard about Jesus’ birth and death on the cross. But, never about a relationship. I knew that was something I was interested in. I knew there was something missing in my life. God knew that I was missing a God-sized whole in my heart that only He could fill.

After several weeks, God prompted me to pray a simple prayer, with what little I knew right then, to put my trust in Him. I understood that I was separated from God because of my sin, but that Jesus sacrificed his life on the cross as the only way for me to spend eternity with God. I, right then, declared Jesus to be the Lord of my life and I committed to live every day for Him and with Him.

It was an amazing day for me, filled with hope. It was a decision I made in the quiet of my heart, but I knew it was as real as anything I have every experienced.

My life did not do a complete 180. I still had problems and struggles. But, I now had a God on my side to turn to when I messed up, and to help me get back on the path He had for me. It was a path that soon led me to my husband, who also came to know the Lord around the same time I did, even though we met a few years later. God was joining and guiding our paths all along.

God continues to guide me each day. I still have hard days, and I still mess up. God has also grown me up a bit and I learn from Him all the time. I praise God that He chooses to use me in any way. I pray I am always open to His prompting.

Thanks for letting me share. I pray you have a blessed day. Today, with many uncertainties, I pray “Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus” Philippians 4:6-7. A long time ago, my friend Kara gave me a CD, Seeds of Courage, with Bible verses put to cool music. This is one of those, so I will be praying this verse in song all day!

Love,
Jess

Playing catch up!

Okay, I have finished my Bible study/devotional, Just Enough Light for the Step I'm On.  Since I left off quite a while back I will just touch on some of the things that were so meaningful to me in the last 8 chapters and then, I encourage you to read to the book and delve deep into the study questions, making them as personal to you as possible.  You will be blessed, as I was!

I learned:

• to trust that God has a calling for my life and not to worry if I missed the calling all-together, as God will find me wherever I am (even in the hospital!)
• greatness is not about power, money, strength, accomplishments.  True greatness is not about me, it's about His greatness in me.
• life can never consistently live up to my expectations. The level of happiness I experience in life does not depend on others; it depends on God.  Of course, I often rely on people and things, but when they disappoint me I feel hurt.  Although that is understandable,  it should not take away my joy.  She wrote, it pleases God when you have faith enough in the midst of your disappointment to put your hope and expectations in Him.
• Psalm 61:1-4 "Hear my cry, O God, Attend to my prayer, From the end of the earth, I will cry to You, When my heart is overwhelmed,; Lead me to the rock that is higher that I. For you have been a shelter for me, A strong tower from the enemy.  I will abide in your tabernacle forever; I will trust in the shelter of your wings." I cling to this verse because it helps me remember of how He has answered my prayer before (have been a shelter!) and He will answer and lead me again.
• that in times of great loss, we try to wrap our minds around how something like this could happen.  God wants us to let go of getting your arms around it and let God get His arms around you.
• the last three chapters are about our past, present and future. It was a good set to end on.  There are issues in my past where I must simply forgive as unforgiveness eats at my present.  And when unforgivness rears its head again, I can say, I've dealt with that and forgiven that person/issue... and move on.  I must also forgive myself of past issues and let myself move on as well.  As for my present, if I am where God wants me to be right now, there are no greener pastures.  My future is bright and I am excited and hopeful as I remember 1 Corinthians 2:9 "Eye has not seen, nor ear heard, nor have entered into the heart of man the things which God has prepared for those who love Him."  Yea!! Even greater plans than I can dream up, and I am dreaming big!

We have had an eventful past few days with lots of doctors trying to make sense of my chest pain.  It is still there, but not as intense.  My fever come and goes, my heart rate is still a little high and my breathing a little shallow, but those are at least improving each day!  Jake mentioned that during a scan for my chest, the radiologist noticed the T-12 vertebrae.  So, until the neurosurgeons meet on Monday, I am not able to get up and in my brace as they do not want to complicate the issue.  I do not think we are looking at the same injury as in California where the tumor is wrapped around the spinal cord.  I was told this looks more like a compression fracture that could be fixed my inserting some cement to cushion in between the two vertebrae.  Have you ever heard of a cement cushion! Someone should try that one out in there house and let me know how comfy it is before I change out all my furniture.  I will have an MRI tomorrow to get a better look.  I will also have a nuclear test to completely rule out a blood clot causing my chest pain.  

The girls make me laugh all the time.  They always grab a small piece of chocolate from a basket in my hospital room when they come visit.  Bryn tried a Thousand Grand bar the other day, and after the first bite exclaimed, "De-crunchous!"  A bryn-ism I loved hearing.  I asked Katelyn yesterday IF we painted the house if she would want to change her colors.  Her paint is just a year old: teal, purple and lime green.  Her main color now is teal, so she said, rather confidently, "I would probably just switch the purple with the teal." Yeah, that was just what I was thinking!!! Not really:) Jadyn is always so serious and likes to lean new things and do them on her own.  When we were playing checkers, I made the mistake of saying that I saw a move where she could "jump" me with her checker. This was my downfall, for after much contemplation, she asked my to show her.  When I did, she refused to make the move and was mad the whole game! We even started over!! She was torn between wanting the advice and wanting to play on her own.  I thought it was precious, but it took a lot of convincing to get her to start over!! 

Love to all of you! Thank you for your prayers and help!

Jess

IDK

Today is one of those days I'd like to know some answers, but the truth is I don't know.   Here's what I do know.   Jess woke up this morning with chest pain.   They have ruled out a heart problem or a blood clot.   She could just be sick-- they took some cultures but we don't have the results yet.   She could also have spinal cord compression again.   They took some scans and x-rays which showed a possible problem in an area of her back below where she had surgery and rods put in-- possibly a spinal cord compression at T-12.   A neurosurgeon is going to take a little at the results, but we don't know when the neurosurgeon will do that.  Jess is obviously not feeling good, but she still made the trek to get radiation today.    She is probably the most strong when she is weak. I know you would like some answers too, but right now we will just have to pray without knowing.

Jessica's Homecoming Delayed

Jess was still a bit sore from the surgery yesterdays-- but her leg felt much better.   Her PT today iced her leg-- a simple remedy that really helped.   She also went for fourth radiation treatment.  Her first was Friday last week and she had one on both Monday and Tuesday (but not yesterday because of her surgery).   This time she felt queasy afterwards.   Radiation tends to effect the area around the targeted spot and since they've been radiating her back-- it is no doubt effecting her stomach.   She'll have six more radiation treatments on her back-- they are holding off on her pelvis to give her leg time to heal.   They also moved Jessa's release date from this weekend to a week from today.    This is not what we wanted to hear, but now I will have more time to get the house ready and Jess will have more time to regain her strength before she makes the transition back home.

Lots of Waiting... but Success

Jess was scheduled for surgery this morning between 6 and 11, but hospital time is apparently the same in Texas as it was in California. They came to Zale at 2 in the afternoon to wheel across the Skybridge to nearby Parkland hospital. Then another 2 and half hours until they took her to the OR (operating room) at 4:30. The surgery took about an hour and half and went very smoothly. Dr. Star put in a long titanium rod in her upper leg (femur) and secured it with three screws. He said bleeding was minimal, but she will feel pain at the incision site for a bit. Then another hour and half past during which Jess groggily woke up. There was the hospital equivalent of a traffic jam in the recovery room because of the amount of surgeries going on tonight, but we got to see her about 6:45. Unfortunately 7 o'clock is shift change so we had to wait until Zale was ready for her. Here it is a little after 8 and Jess is settled. Whew! Thanks for waiting with us wherever you happen to be and especially for praying for a successful surgery. Good night.

First Star I See Tonight

Jess got to see Dr. Star tonight. He will do orthoscopic surgery to put in a rod to stabilize her femur bone. He will use an x-ray to guide his surgery which will take an hour. There is not a specific surgery time, but Jess will be his third surgery of the morning. She will spend the night at Zale and be home Thursday or Friday. He said that her leg which has been hurting a lot will feel better almost immediately-- just some pain at the incision site. Pray for us in the morning.

A Starless Night

Dr. Adam Star did not make it in to see Jess this morning, this afternoon, or tonight. I or Jess will post when she sees him.

Happy Mother's Day!

Today, I received an early Mother's Day present by getting to go on a day pass from the hospital to Bryn's 5th birthday party.  Several weeks ago, while planning the tea party, Bryn turned to me and said, "You won't be at my party!" Of course, I was sad I couldn't come, and told her how many people would be there that loved her so much.  In the background, I began asking around about these day passes I kept hearing about.  I asked my doctors and they were all over helping me so I could go.  Even after the femur setback, my doctor gave me explicit instructions to just sit in my wheelchair, but was happy to let me go for the day!  

I was ecstatic!! It was a surprise for both Jadyn and Bryn in case something did not work out.  Jake took the day off work Friday to come up to get trained and cleared to transfer me from wheelchair to our new car.  The transfer went perfectly.  Our beautiful new car is almost completely level with the wheelchair making the transfer almost easy.  

This morning, Jake came to pick me up and we were on the road by 10.  The party went perfectly, I thought! My fabulous friends Alyson and Shelley, along with my family helped plan and execute the best tea party a girl cold ask for.  Really, it went better than any party I have planned.  I think it helped that the adults in the room were almost all teachers!  They have a way with 5 year olds, and can each quiet a room in seconds:)  

I was blessed, blessed, blessed beyond measure to be able to be there.  I kept saying, Thank you God for this moment!  I got back to my hospital room a little after 3:00.  It was a long day, and quite past my max for staying in the brace, but it was so worth all the preparation and some aches and pains to have made it! Bryn said while snuggling in my hospital bed, "I am glad you got to come to my party." Me too Bryn, me too!! 

Katelyn was a great addition to the party as well and took so many pictures.  Tomorrow, I will try to download some and post on the blog.  

Every time I see Jake, he tells me of someone who is helping at our house with some project that will help me get around at our home.  I am so grateful for all of you who are helping.  And, for so many who help with everyday tasks with the girls, our yard, home, dinners, financial support, prayers...it is so difficult to thank all of you who literally make life work for us.  One, because I learn of something new someone has done literally every day.  Two, because words are hard to come by when thank you is never enough.  

You are amazing.

With much love and a Happy Mother's Day,

Jess

Leg Surgery

Jess has been experiencing some leg pain, so they took some x-rays. It turns out she has a new tumor in her femur which has weakened the bone. To prevent it from breaking they will have surgery. The surgeon she wants to do the surgery, Dr. Adam Star, is on vacation but the hospital was able to get in contact with him. Jess will have the surgery the beginning part of next week. We were very much looking forward to Jess coming home on Wednesday, but that looks unlikely now. The good news is that they are still going to let Jess leave on a day pass to go to Bryn's party.

7 Days and Counting

Bryn's birthday was April 26th but her party will be this Saturday. We are very much hoping that Jess will be able to come. I'm going to get some training on Friday on how to safely transport her from the wheelchair to the car. Then hopefully Jess will be able to get a day pass to travel to Arlington to her mom's house where the party will be at. I don't think the trip will be easy but Jess has been able to do increasingly more difficult things with PT-- I think she really excels at challenges. She also spoke with her radiology oncologist this week and they talked about starting radiation as soon as the end of next week. Here's a Yikes story for you. We have been testing out our house by riding around in a wheelchair. Well, the Yikes came rushing up to me and yelled that they had breaked the wheelchair. The English teacher in me asked if they had broken it. "No," they said pulling me by the hand. They were right, they had figured out how to lock the brakes on the wheelchair so they had indeed "braked" it.

Helping Hands

If there were one scripture that summarized the day today it would be "Do not be anxious about anything but by prayer and petition present your requests to God..." I had a jam-packed day with lots of stuff that seemed like it was going to go wrong, but it really turned out OK. The best thing about today ended up buying a car. Most people wouldn't consider a used car as their perfect car but this one seemed to be perfect for Jess, a 2004 Honda Accord (thank you Michael). The three neatest features I think are leather seats (so she can slide easily from wheelchair to car seat), electric controls of the passenger seat (no leg power needed), and a navigation system (this last one is just cool). Also there is plenty of room in the trunk for her wheelchair. I am anticipating our needs shifting slightly as Jess comes home, so to prepare for that I went to Lance Armstrong's site"Lotsa Helping Hands" and created a site for Jess. The site has a calendar where we can specify exactly what we need and when we need it. I think it sounds pretty neat because people can sign up only for something they would enjoy doing and for us it gives a central location to coordinate everything. The site is set up to be invite only so send me an email with "Helping Hands" in the subject area and in your message put your first and last name. The email I've set up for this is kaylorhelpinghands@yahoo.com

Picture update...

My brother Alex, from California, came to visit the girls while he was in Dallas on business. Jake and I were in California, while I was in the hospital. Here are a few pictures from his visit. They all played on the trampoline, thus the great action shot of Katelyn. Jadyn and Bryn are playing checkers at Cracker Barrel where they ate dinner one night. What fun!

Here are two pictures of Bryn enjoying her time with great friends Evelyn and Megan Hurtado. My friend Shelley posted some great pictures on her blog lately of all the girls growing up together: www.hurtadofamilyblog.blogspot.com




Here is a picture of Shelley and Allyson when they came up to visit at the hospital. Shelley did my toenails!



Lastly, I wanted to show you a graphic of a t-shirt design that my fabulously talented, wonderful friend, Lisa Grabowski, made herself!! She is putting it on many different styles of shirts to sell benefiting our family. You can contact me if you want her email. I think they are so beautiful, and I am so humbled by her overwhelming kindness for this and so much else she has taken on for our family. We are blessed by her, and all of you who support her efforts.

Love to you all,

Jess

Waiting...

Hi all! I hope this post finds you all well.  It was hard to believe I had not posted since Sunday.  I am sorry for the long lapse.  I was not feeling good the first part of the week.  Now, I am feeling good.  

I had a fun day with the girls and Jake this morning.  I had not thought much of it, but they had not seen me "up" in my wheelchair as they come at night when I am already in bed.  That was fun, and we went into the bigger family game room to play games and visit.  I also took them all around the gym I work out in every day.  It was a great visit.  

I also was able to see so many people yesterday; a friend from Gilda's, Lori, Sandy, Jacque, Zander and Kaylee, and a surprise visit from great friends Jeff and Leann, as well as Jake!  What a nice night:)

Several of you have wondered about my devotional.  It is called "Just Enough Light for the Step I'm On" by Stormie Omartin.  It is quite a bit different from her other devotionals.  As with any Bible study, it could be just read right through, or it could impact your every day.  I try to ask God to speak to me through each chapter, and He has followed through.  There are questions at the end that take you into various Bible passages and ask you questions that help you really dig into how this applies you. I highly recommend it.  It is also neat, because all through the book, it speaks of walking and taking steps with God.  This helps me both spiritually and physically as I learn to walk.  

Today's chapter focus was on waiting.  It was good for me, because I feel like I am waiting for a lot right now.  One mind shift I made reading this chapter was the thought that I should be waiting on God and not waiting on my circumstances.  I might think I was waiting on God's plan or God's timing.  But, really, my thoughts were on waiting on the "circumstance" to change.  For example, I might think I am waiting for my cancer to be cured.  I can easily get caught up in this request, and feel like I am waiting and waiting.  If I think of it as it should be, that I am waiting on God, it gives me a greater anticipation that I am not just waiting on the situation to change, but patiently waiting on God who is always moving in my life.   

There is a part in the book that says, "As long as you are waiting with the Lord, you are going from "glory to glory" and "strength to strength."  You are always going somewhere in God's plan.  His purpose for you is always being realized." Wow.  This is a great reminder to me that God is moving in my life, even though there are things in my life that appear to be standing still.  I can wait on God.

I am looking forward to tomorrow when several friends are coming for dinner.  And then, I am counting down until I get to come home on May 14th!

Much love,

Jess