Sunday, July 29, 2012

Another update

I haven't posted for a few days, I know...  It's been one heck of a busy week for me.  I'm so glad JaNae's mom was able to be here with her.  JaNae called me after her mother had left and was very emotional, she was lonely.  I have noticed that when her mom is here, she and I seem to talk less.  I think it is because JaNae is either sleeping, or working on a project...  You would not believe the quilting she has done.  It's her therapy. (I think she should sell them to support her habit.)  If she quilts enough she might not need that psychiatrist after all.  I'm another story.  I need to find some more outlets for stress.  I was driving the other day and found I had chomped an entire pack of gum... one piece after another by the time I got to work.

The good thing is that JaNae has been feeling a bit better this round.  She was definitely less sick than last time and as of today she seems to be much improved.  The first 4 days after the infusion are bad.  She does have some neuropathy and can't touch anything cold at all.  I was filling the car with gas tonight at Maverick and she ran in to get a gallon of milk.  I noticed after we got home that she had wrapped the handle with napkins so she could hold on to it. 

On another note, our oldest found a wasp nest in the back yard fence.  He decided to take care of it with fireworks left over from the 4th of July.  Here he is in protective garb... and it actually worked.  The wasps are mo more. 

Thank you for the continued support and prayers.

Tuesday, July 24, 2012

Round 2

I am up early this morning, not able to sleep.  I forgot that the Chemotherapy messes with my sleep.  I sleep deep for a few hours and then wake up in a cold sweat with my mind racing.  Jeff is snoring that doesn't help.  I am tempted to record him in his sleep and post it on this blog.....although it may not be as entertaining as some of the video's of me in some of my finer drugged up stupor moments.  I'll save him the embarrassment.  

Yesterday, Jeff had to work, so he dropped me off around 7:45 at the hospital.  I felt like a lamb off to the slaughter.  Ok...I am exaggerating a little, but I was filled with emotions that I didn't expect when he drove away.   The anxiety that I felt with some of the unknowns from last week were replaced with...."holy crap, I can't believe that I am here again, and I so don't want to be!"  I know what I am in for this week and am praying that it is easier than last.  Walking into the cancer center is hard. (Not the walking part...I always take the stairs because it makes me feel like a rebel....just the emotional part!)  I know that no one wants to be there, but I feel so out of place.  I am younger by decades then everyone there and feel like I am on parade. My Oncologist walked in to the office, just as I found my seat and asked how my week went and I broke down.  I was surprised that I my emotions snuck up on my like that.  I was not prepared to have to deal with them, and in the waiting room of all places. Not that my week was all that horrible, I literally had just 3 days that were hard and less than pleasant, but because I was back in the office, gearing up to receive more treatment when I want to be home and in control of my life, enjoying the summer that is quickly passing before our eyes, with my kids.

I grabbed a box of tissues, sucked it up, and tried not to show my ugly cry face.  The nurse quickly took me back to access and flush my port, and then to draw blood for the Dr.  When I finally met with her, I did more crying and verbal diarrhea-ing.  She was so great at listening and being supportive...  and then she sicked the cancer center's psychiatrist on me, which made me cry some more.  I told a friend that at that moment I wanted to moon the Dr but I remembered how many times I have had to show my butt to people (medical people, let me clarify) and then quickly changed my mind.  I also had a handful of wet tissues that would slow down the process.  I have an appointment next week and am hoping I don't cancel it!  :)

Around 9:30 I went back to the Chemotherapy suites, chose a comfy bed, because that favorite sunny room that I had last week, was already taken by a cute little grandma with a snazzy wig. My mom arrived shortly after I started, which was a welcome, comforting and happy sight.  She drove up from Twin Falls and will stay with us for a few days holding down the fort.  I love having her here and am so thankful for her sacrifice.  She eases a lot of stress for me and Jeff....and the children of course love having here here too.  I don't know what I would do without her!  To pass the time, we chatted and worked on hand binding some quilts that we have both had done for quite some time. It felt good to accomplish something while we waited. 

The nurses at the cancer center are awesome and spare no expense at caring for your every need....whey wait me hand and foot.  For the first few hours I had a few of them keep my ice water filled to the brim.  I enjoyed it clear up until the time that Oxalyplatin kicked in...and then they brought me warm water.  They treat you to endless supply of warm blankets and wait patiently while you choose the "yummy" hospital lunch that is delivered shortly after noon.  I chose some rice with an Asian type of chicken and vegetables.  It was the only thing on the menu that didn't make me want to vomit...and I must say that it wasn't too shabby.  
I keep them hopping with quite a large collection of  cocktails in hanging IV bags.  When one or two finish dripping their cancer fighting magic, they replace them with the next scheduled concoction. My favorite nurse did me the honor of disposing of each empty IV bag, in the proper trash receptacle with spirit and gusto!  I made her throw them hard  into the trash...and for some strange reason it was freeing and felt amazing!

One of the cute receptionists brought me in this cute mug.    It says "Cancer Ain't For Sissy's".  (I think it was because she witnessed the hideous waiting room melt down...but none the less I love it and it brightened my day.  I will use it to warm up my drinks and remember that I am tougher than I sometimes feel!) 

Cancer isn't for sissies!

We were finished around 2:30, earlier than last week.  As we walked out of the hospital, we walked by all of the handi-capped parking.  I always walk by there fast, feeling happy that I am not begging for one of those.  My kids however are begging for me to get one of those because they are lazy.....and the weather is hot.  Out came this lady and a little umbrella stroller.  As she walked/shuffled toward us, we noticed that she did not have a baby in that stroller, but a little fat dog.  Mom and I got the giggles.  I told her that I should have saved our baby stuff, so that when she gets older she can put it to good use with a cute little pampered, fat, lap dog. 

We drove home to happy children that were being loved and taken care of by my Aunt Charlotte and Uncle Lew, who live in town.  We are so lucky to have them close.  Our children adore them.  Walker is at scout camp this week so Charlotte spent the morning in the kitchen chatting with Whitney and teaching her some great cooking secrets.  She brought over her pannini maker and had a delicious late lunch waiting for us.  They really enjoy each others company.  Lew has another hole is his wallet from a trip to the gas station with the younger boys.  He patiently waited 20 minutes for the boys to decide and re-decide what treats (and yes that is plural) they wanted to schmooze Lew into purchasing for them.  They owe him some serious weed pulling around his yard.  I think Lew was relieved that Wes, the 5 year old, didn't introduce him to the gas station attendant.  Last time there were some awkward moments as Wes introduced Lew as his uncle, and proceeded to tell that he was taking care of him because his mom has cancer.   We have laughed and laughed about the poor attendants face....Lew gives a great impression.  What the heck do you say to that?  I am relieved that the our children seem to be happy and doing well with this whole process.  We have had lots of help, and for that we are so grateful.

Later in the afternoon Mom and Charlotte took me to the fabric store for a little therapy.  We will be working on some fun projects this week that will be therapeutic. 

I am so happy to have Round #2 crossed off my list. We won't go into how many I have left......I am just focusing on what I have accomplished!   I have been reunited with that hideous fanny pack as well as cold sensitivity in my hands and throat.  I am anxious to go back on Wednesday for my disconnect and am hoping that neuropathy will be temporary like last week.  After about 6 days I was able to enjoy cold drinks and ice, which made a world of difference with this 100 degree weather.  And here is to this week......we are determined that it is going to be a good one! :)

Tuesday, July 17, 2012

A bruised port

For those interested, this is what JaNae's port looks like.  She's tired of me telling her to show it to people.  She has been a pretty good sport but I really think she feels like a lab rat at times.  She's feeling a lot better than she did last week... but I can tell she's facing the next infusion with some apprehension.

Sunday was a good relaxing day  we had some family drop by with a book for her to read which was very nice.  We had a delicious dinner brought to us by church friends and I hope JaNae can talk them out of the recipe because it was good!  Then we had some other friends over for an ice cream treat.  They have some kids that are similar ages so the kids had a blast and everyone seemed to get along.  It was a lot of fun and we feel lucky and blessed to have met so many great people in the year that we have lived here. It sure has gone by fast.

People have asked for an update on the ducks...  They no longer come to see us or beg for food.  They appear to be very content living in the creek behind our house and as far as we can tell, they have not been harassed in any way by male ducks who may try to take advantage.   I have had other people who have offered to show me how to roast and eat them, but I think I'll pass on their generous offer.

That's a pretty nice bruise.

Saturday, July 14, 2012

The sickness seems to be passing...

JaNae did well on Monday and Tuesday, and then began to feel a little nauseous and fatigued on Wednesday. Wednesday night was very long. I think JaNae probably woke up every 15 minutes all night. None of us got very much rest. The next morning I had to teach a lecture and I felt like my brain was made out of mush.

Something I didn't expect to find when I came home for lunch on Thursday was JaNae lying on the bathroom floor pale as a sheet, as miserable as I had ever seen her. It is a very helpless feeling to watch her suffer so much. We made several phone calls to our doctors trying to see if there was anything else we could do, but really just needed some time to pass for her to feel better. 

Thursday night was even worse... I honestly do not remember JaNae ever having a night where she was so uncomfortable. Friday, I worked in clinic all day and had the worst headache I had experienced for years, but made it through the 10 hour shift. By last night, she was a lot better but we went to bed early. We were both completely spent. Then this morning she was feeling pretty good... Not much nausea or abdominal pain. We went out with the kids for a walk and a treat. I hope she doesn't have to experience that again. I also want everyone to know that we would have been lost without the support of friends and family. JaNae's mom was a blessing in our home this week. Thank you.

On a lighter note... I wanted to add some lines from our 5 year old. He discovered a stash of Popsicles in the freezer in the garage and after sneaking and eating 5 of them and developing a tummy ache... He said "I think I caught cancer!"

Then the other night I was lying on his bed telling the kids a story which is a nightly tradition in our house, and I was so tired I nearly fell asleep telling it. I didn't want to move. The little bugger was trying to kick me off his bed and I said that I might as well just sleep all night right where I was. He then said "if you do that, I'll go get in your bed and kiss your lady all night!"  That got me up and out of there!


Tuesday, July 10, 2012

Round 1

Round One of Chemotherapy went well.  We arrived at the hospital around 8am, and were surprised at what all this long infusion appointment entailed.   They took me back right away and accessed my new shiny port, that was placed on Friday and was very bruised and sore.  Over the weekend I was the time master with the clock excited for when time passed and allowed me to take more pain meds.  My chest, arm and shoulder area made me miserable.

We were instructed to place some numbing cream over the port area 90 minutes before my appointment was heaven sent as all as I felt was pressure.  (Insert hallelujahs here.)  They drew some blood, through the accessed port, for my baseline numbers.  And then we played a game of ping-pong, back and forth with the MSTI office seeing the Medical Oncologist and Social Worker and Pharmacist.  Everyone was so great and accommodating, but I must admit that halfway through the Social Worker part, I mentally checked out because of the anxiety I felt to start the Chemo.  Around 10:00 we moved into a nice sunny private room to begin. 

The Port, Tubing, and My Man Hands 
For the next 5 hours I received various sorts of cocktails of saline fluids, anti nausea meds, sleepy meds, calcium/magnesium meds, stupid chemotherapy meds, more calcium/magnesium meds, and one more push of chemotherapy meds....and for the next 46 hours I get to pack around a pump of more chemotherapy.  (It is 5 fluorouracil...or more appropriately named, 5 FU, and after writing and saying that I feel like the Bishop and I need to go have a chat!)  I was waited on hand and foot and was even served lunch.  I feel like I have no appetite, so Jeff helped me decide...and then ate what I didn't want.  It was perfect.  He did order me a little milk shake that was delish.   I was happy to enjoy it...because halfway through my infusions anything cold that I swallowed hurt going down, as in glass shards scraping the esophagus.  Nice!  We were surprised at how fast that side effect presented itself...but I am now a fan of drinking room temperature/warm drinks.  I also noticed tingling in my hand and feet..and that my hands feel pain when washing them with sink water that is on its way from cold to warm.....
It is the weirdest sensation that Oxalyplatin has graced me with! 
 And I am bringing Sexy Back with this awesome Fanny Pack.  (It holds my 5 FU Pump)
The last time I remember wearing one of these bad boys was in the late 80's at Disney Land.
 The nurse mentioned that there are some people that place it in a little side bag that hangs over your shoulder.  I told her that I probably paid way too much for this beauty, and that I am going to wear it with pride.  I may even Bedazzle it!  (any great ideas?...let me know!)  We get to go back for a disconnect on Wednesday afternoon, and then I will be free from the Fanny Pack for the next 12 days. 

After 4:00 we escaped the confines of that sunny private room, and ran a few errands on the way home. It felt good to not be in bed, and to move around without being slave to the pole. We came home and did a few things around the house and then I slept off more of my sleepy meds.  When I woke up my hands and feet were feeling little shocks (like I stuck something into a light socket) and then tingling....I needed a major distraction so Jeff took me out again for Costco, wash a car, grab some dinner run.  It was just what I needed and I am thankful for him and his constant support and pampering.  I am grateful that he is mine.
The house has been quiet and peaceful, as the kids are partying with my angel parents until later today.  I am so thankful for the break, but will be happy when they are home again.   
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Saturday, July 7, 2012

What are you wearing under than gown?

Here she is... drugged up again.  Listen closely to the conversation... It's pretty funny... and she didn't veto it  (probably because she is still a little drugged on pain meds).....she is a light weight! 

I also want to say thanks to some special friends who sent us a TON of lip balm.  
I think there are over 40 tubes of it in assorted flavors.  
(They must have heard about how when we were engaged we kissed so much our lips got chapped!)  
And with those 40 tubes, were some amazing notes and words of encouragement.  We are so appreciative of great, great friends and their love and support! 

Thank you. 

Friday, July 6, 2012

Waiting again...

This room is familiar.  In fact I'm sitting I'm sitting in the same chair I was in as I started this blog on May 24th.  JaNae was just taken away to pre-op and they told me I'd be able to see her in about an hour.  Then she'll have the port implanted and I'll be able to see her afterward in recovery.

I wasn't prepared for the anxiety that set in as we walked into the waiting area.  JaNae doesn't have memories of this room, but last time I sat here for 6 hours watching the airport style monitor telling me where she was. The same nurse is sitting at the desk but I don't think she remembers me.  I have to report to her every time I leave the room so she knows where to get a hold of me.  I walked across the hall to get a diet coke and someone came running after me to be sure I wasn't leaving.  Oh look!  Some of the magazines are still the same... 

Her surgery today will be very mild compared to the last one and she is much more calm about it. I'm glad.  It is hard to watch her be stressed out and anxious.  

It's already been 20 minutes...  There is a soap opera on the TV and some older women are watching it.  Every time I look at the screen, this one character is kissing a different guy.    There is a woman off to my right eating chips and her bag is noisy and annoying.  I see a family in a huddle across the room with a priest leading them in prayer.  They look very concerned...  I hope things go well for their loved one.  Now the soap is back on and that woman is talking to a guy with no shirt on... he is unrealistically ripped and I notice the old women all stop talking to stare at the guy on the screen...  I'd rather be watching animal planet.

It's been 55 minutes, a nurse came to get me.  JaNae was ready to go and I got to talk with her for a few minutes before they gave her some medicine that made her sleepy.  I did get another video of drunk JaNae before they took her away that I'll share with her family but probably not post it... I'm sure she'd veto it if I tried.  At one point she suddenly rolled toward me and asked, "What did I step in?"  She said she thought she was sweeping the floor and stepped in something gross.  Then she started giggling.  Her giggling quickly turned into a deep sleep and before long, they came to take her to the OR.

It's now been 2 hours since they first took her to pre-op and I have been told to wait in this little consultation for the surgeon. It's pretty small... just the right size for a prison cell...  They closed the door too.  I wonder if they locked me in...  He should be here within about 20 minutes.

The surgeon came by and said everything went well. The port is in place and JaNae is awake.  He said  I should be able to see her in about 45 minutes.  I hope she is feeling well and not having any pain.

It's been almost an hour... I hope they come get me soon.  Maybe I need to learn patience.

I got to see her in recovery, she was awake and in good spirits.  The nurse was friendly and had a good sense of humor.  She told me that when JaNae was drugged up, she was being silly and said to the surgeon "You're the bomb!"  JaNae says she can't remember saying that...maybe I should be worried. LOL!

After an hour or so, they lest us leave.  She felt every bump on the way home...  but we are home.  Safe and happy.

Getting started.
Ready to go... do you like the new haircut?

Holding hands while she snoozes.

Tuesday, July 3, 2012

They Say It's Your Birthday!

JaNae's Birthday was on the 3rd.  

It was a good day, but a hard day. 
We woke up to this staring us.  Whitney is the mastermind of any and every PAR-TAY at our house.  She spent days making tissue paper flowers to decorate the house with, along with cute signs and her newest project, balloon animals and creations.  The boys are so lucky to have a sister like her, just as we are blessed to have her as a daughter.

JaNae had an appointment with her Surgeon early in the morning for one last exam before we meet with Oncology and start the big guns.
He had her do a prep that made her sick for the majority of the day.  Not so fun.
I had to go into work for a few minutes, but the children were good to her.   They adore her...:)  You can see a little bit of her shorter hair in these pictures.  She is still getting used to the length, but we think it looks good!

She felt better in the evening so we were able to sneak out alone and do a little Birthday shopping and dinner.  When we arrived home, we furiously finished getting ready for JaNae's younger brother to visit for a few days, all the way from Seattle. It is so good to be around family and enjoy good company at this time.  It is going to be a busy and fun week!

Monday, July 2, 2012

Patience Tester

I have had this particular post brewing in my little mind for more than a few days now.  I have needed to bite the bullet and get it out...  One of my personality traits that I am not loving about myself, is that I am an emotional vault.  Especially when I am stressed or anxious, instead of communicating, I hold my emotions the safety and privacy of my own little brain.  I am sure Jeff feels like he needs a crowbar to crack them out of me, although he reads me like a book from the outside.  How thankful I am for him as my husband.  He is a good patient man.  And trust me....I have tried and tested his patience this week.    I think I have tried and tested my own patience this week.  I am driving myself batty. 

So here I am, parking myself down on the couch, laptop in lap, and forcing myself to lay all some of it out.  I am telling myself this will be therapeutic, especially when it is all said and done, and I have this little treasure of a blog published in an adorable little book!   Although, all I want to do is continue holding it all in, however  unhealthy it may be. 

The last week that we have spent together has been hard.    I have just not been myself. I have not been dealing with things emotionally. I know that I am entitled to have this spectrum of emotions, I just don't love being so up and down and all over the map, anger and frustration being the emotion of the week.  I feel like there is a rather large elephant that parks his largeness on my chest.  I escape his residence when I fall asleep, but find him back as soon as I realize that I am awake.  I need to evict him.  I have not dealt well as a mother.  Or a wife.  And I hope that everyone that resides at this Johnson home can be resilient and cope with the stresses that fill our address.  My hope is that the children and the hubby, don't feel neglected or unloved, have not had to wear dirty clothing as  few clean items of clothing remain in their drawers, and have not gone hungry, although the nutritional content in Peanut Butter Tacos leaves much to be desired.  And when it comes down to it...that is all that matters.  My house has gone to pot because I run around in circles not being able to concentrate on anything, but together we have kept the health department and their inspectors at bay.  My counterproductive-ness is driving me nuts......but, not crazy enough, unfortunately, to spur some action.   I just feel frustrated that physically I feel fine, but emotionally I am a mess.  My chemo week eve has arrived, and oh how fast it has come.  I want to have my wits about me for just a few more days...but I feel like those wits are no where to be found. But then again.....all that matters is hopefully hanging on! 

Our family was blessed yesterday to attend church together, and to be uplifted and recharged for this next week.  When we arrived home, my angel parents were here all the way from Twin Falls, standing in my kitchen fixing Sunday dinner for us.  Dinner and dessert was amazing and we devoured Salmon and Halibut from Alaska, Asian Coconut Shrimp from Winco, and my very favorite Chocolate Ribbon Cake.  The fine company however, was what was savored.  My feelings are tender for each of them, and I am so thankful  and  feel so blessed to have their love, support and listening ears. How great it was to enjoy them, even if it was for just a few hours.  I honestly do not  know how our little family would survive without them, especially at this time.  It was a day I will remember and hold dear.

In contrast, our family was not so blessed today as the children did chores and special jobs around the house....while their mother did anything but special jobs or chores around the house.  I did however drive myself down the road 5 or 6 miles to a hair appointment in that I thought about cancelling about 5 or 6 times.  I have not felt so tough or brave in the last few days, but I had a moment of toughness and braveness and decided to not chicken out or run away to Mexico.  I cut my hair.....and I am not sure what to think about it, although in the beginning cutting it was what I wanted to do.  The little donation of about 10 inches is neatly burrito-d in a snazzy piece of foil, ready to send off in the mail.  And I am determined to not waste any more tears on stuff that will grow back.   I am so grateful for adorable children that greeted me with hugs, smiles, sweet comments and shoulders to cry on when I arrived home.  I am blessed to have each of them.  I will post some pictures tomorrow as I am overcome with laziness and need to call it a night.

....Dang it, now as you see, I am testing your patience!
Love the Cancer Patient!  :)

Sunday, July 1, 2012

It's Sunday again... and updates.

Time is going by fast. Overall, JaNae has been feeling pretty well physically.  Emotionally, things have been hard. The anticipation and fear of the unknown cause a lot of anxiety and takes it's toll on us. The chemotherapy starts a week from tomorrow. The closer it gets, the more anxiety we seem to feel. She is scheduled to get the port implanted in her chest on Friday.  We have been told that getting a "power port" is the best way to go,  but still... thinking of something being surgically implanted is kind of sickening.  I worry that the new lump by her collar bone will be a constant reminder of what we are going through.

The highlight of our week was having one of JaNae's great friends (who does amazing things with a camera) take some family photos.  We will post  some of the pictures when they are done.  The experience was fun and the kids behaved most of the time.  I was a little nervous about trespassing but it turned out ok. Thank you so much, Bobbi.

Last week we spent 3 hours at the cancer center going through an orientation and learning about what to expect.  It was a wonderful class and the nurse was very nice.  There were other cancer patients in attendance with their families but we were the youngest couple there by several decades. I think all of the others in the class were smokers who were there for lung cancer.  (If you are reading this and smoke, please stop today.)  From the comments of some of the other patients, I presume that their treatments are palliative.  I felt so bad for everyone there...  but looking at them and then looking at JaNae, I can see how cancer can be so unfair and I hate it.

 One of the spouses in the class reminded me of a living Egyptian mummy.  Seriously, I was totally shocked to find out she wasn't a cancer patient.  Anyway, this skeleton lady was passing out business cards and making sure we all knew about her aromatherapy business.  JaNae was rolling her eyes the upstaging of the presentation.  We did feel empathy for the others and don't want to make light of their illnesses.  We know that they too are anxious, afraid and in pain.

  Then the presentation took a turn we did not expect,  they passed out a little booklet about how to have physical intimacy when you have cancer.  It was quite detailed.  These old coots were grabbing up the little booklets and were very excited to read them... Maybe they needed some tips. I could tell JaNae was a little red in the face as she added the book to her stack of reading materials.

Today was fast Sunday in LDS circles.  JaNae likes to refer to testimony meeting as "Open Mic Sunday" because you never know what you will hear.
(For our non-LDS friends, Fast Sunday is generally the 1st Sunday of the month.  We have a tradition of fasting for 2 meals and giving the money we would have spent on food to help support members of our congregations who are in need.  We also have a testimony meeting where members can share their thoughts,  feelings, and testimonies.) 
Anyway, today there were some excellent testimonies shared.  The crowning jewel of the meeting was when a six year old girl got up and started by telling about how her uncle caught her a bullfrog.  I'm sure everyone in the room was wondering where this story was going... She continued by describing how they poked holes in the lid of a container for it to get air and by they way she spoke about it, I imagined that she was very pleased to have a frog for a pet.  But alas, in the morning the frog was gone, it had escaped. She was very upset and couldn't find it anywhere.  She decided to pray and ask her Father in Heaven to help her find the lost bullfrog. She went to school and while at school, her mother found the missing amphibian and returned it to the cage. She said when her mother called her to let her know that what was missing had been found,  she was very excited. She said "I know that Heavenly Father answered my prayer."  There was a very good feeling in the room as that little girl spoke with faith and conviction.  

That got me thinking...  When I was a lot younger, a lost a large bullsnake in my mother's new car.  (It's a long story.)  It went under the carpet and up behind the dashboard.  We were afraid it would die in there. (and ruin that new car smell.)  To make a long story short, we prayed that the snake would come out of the car and it did.  I was very relieved that it came out and I felt that my prayer was answered also. 

If a Father in Heaven answers the prayers of children who lost a frog or misplaced a snake,  I have to believe He will answer the prayers of countless friends and family as JaNae prepares for chemotherapy.  I pray for her daily also. Thank you for your continued prayers and support.