Thursday, February 26, 2009
Anyway, I had seven on Wednesday and again on Thursday. So, let's pray today I have fewer. I made it through the night without any....that is great!!!
We had pics taken a few weeks ago with a friend that is going to"photo-journal" this next year for us. We will take pics once a quarter. I still struggle with looking at myself and admitting it's me. It just doesn't look like me, to me...I look silly in some of the pics, but B looks perfect in every single one of them. B found an old house, barn, etc., and that's where we took the pics.
You can check them out at www.haleybphotography.com
Click on Portraits
and the password is fox
Directly under the pic is the picture #...you'll have to let us know your favorites as we need to place the order within the next week.
This is my favorite, though.
Isn't he the cutest?!!! That's my man!! This was the door to the storm cellar that we opened!!
****Also, B's Nana is going in for a procedure on Monday. Please be in prayer for her. They are looking at her carotid artery, I believe. It is pretty occluded and she has been having a few fainting spells and been pretty light headed. So, they are going in to check it out and possibly put a stint in, if necessary. Pray, pray, pray!!!****
Oh yeah, B woke up this morning with pink eye. So, he's on his way to the doc right now to get it checked out and treated. Pray that he can heal quickly. Poor guy needs to be able to get to work. I kept him from working too much last year. Then, he had that yucky virus last week that knocked him out pretty good and he hasn't stopped coughing since then...so, he needs some super healing...
Wednesday, February 25, 2009
As for Connor, we're still in limbo, but we are making progress. After speaking with the doctors in Houston, they made me realize starting the treatment right now is a little tricky. If we start something right now, he would have to be off of the treatment for three weeks before he could start the protocol on a clinical trial. Also, the doctors were nervous about him starting treatment on Monday (yesterday) and having his blood counts bottom out while we are in Hawaii. We've reached a compromise, so to speak. If they can find a trial for Connor and have it ready to go on Thursday when he gets back, then we will hold off on any drugs until then. If they have nothing concrete planned, we will start treatment on Friday. Friday's treatment would be a combination of oral chemo and a drug that is IV fluid that he will receive once a week. Connor will be back in Dallas before his counts bottom out (usually 7-10 after the chemo starts).
The doctors are looking at 2 different trials right now. We also have the Chief Medical Officer at St. Jude's looking at Connor's medical records to see if he has anything new to offer there (Thanks, Denese). And finally, we have a Dr. Bloom in Chicago looking out for clinical trials and helping us get some of the promising drugs out there in trials that are closed or trials that Connor doesn't qualify for. Dr. Bloom works for an organization that funds clinical trials and helps people who find themselves shut out of trials for one reason or another. PLEASE PRAY FOR GOD'S GUIDANCE -THAT WE WILL CHOOSE THE RIGHT PATH FOR CONNOR, WHETHER IT BE THE CLINICAL TRIAL OR THIS OTHER TREATMENT THAT WE CAN START FRIDAY OR SOMETHING THAT DR. BLOOM FINDS.
"I am the Lord your God, who teaches you what is best for you, who directs you in the way you should go." Isaiah 48:17 I am praying this for us!
I guess Connor's dad and I have reached a point where we are "leaving it all out on the field" in our fight for Connor. No stone unturned, so to speak. We will diligently seek God's direction in Connor's treatment, diligently seek His face, do everything possible to help Connor in this fight .... and then lay it all at Jesus' feet. God knew the number of Connor's days before he was even born, whether that is 8 years old or 80.
(13)"For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made. (16) All the days ordained for me were written in your book before one of them came to be." Psalm 139: 13 and 16
We will rest in the knowledge that God loves Connor more than we do and He has a special plan for him. We are still believing that God is going to save Connor. We will remain steadfast, as our friend Jack directed us to. We are praying God will use these new drugs that will be put in Connor's body like he used the Israelites when they were marching around Jericho. Like the walls of Jericho, this cancer will crumble. Thank you for your continued prayers.
Sunday, February 22, 2009
There have been two changes:
1. I have tried to pay closer attention to what I'm eating. I can't start the Ketogenic/Modified Atkins Diet until I officially meet with the dietitian. The one the doc wants me to meet with isn't available yet. However, we've done a bunch of research on our own and we're trying to institute much of it. We even found out from a local dietitian that shampoos, lotions, etc., can add too many carbs to the count for the day. We can't start the diet completely or we can cross some dangerous lines. So, we are hoping to be able to get in touch with the doc & dietitian soon.
2. The doc switched me to an Extended Release version of the med I'm on...many times through all of this, we have talked about the absorption issues. Thus, trying the IV meds, etc. However, the company just came out with an extended release version of my med. I started it on Wednesday. So, maybe it is allowing my body to keep a higher concentration of the med in my body at all times!
No matter what, we are so grateful! It is such a blessing to go a few days without seizures. Just the extra energy I have is unbelievable. It's amazing how much more I can accomplish.
Thank you all for your prayers!!! We need a miracle and it would be so nice if this was it!
Also, I am so proud of him and have to share...today in church, the sermon was about marriage and what a Biblical Marriage looks like. When our pastor was reading through vows, he stopped on the "in sickness and health part" and called out my hubby and said he felt he was a great example of this! I agree!! How cool that people can look at B and see vows being lived out daily! Makes me proud!!!
Now, I'll try to do some catch-ups with pics...
One of our sweet friends came over at the beginning of the year with her daughter. B pulled out his telescope from when he was a kiddo and took her precious little girl outside and taught her all about the solar system.
They had so much fun. When they were done B gave her his telescope! Isn't she adorable?
I believe that I mentioned a few weeks ago that one of our neighbors passed away, very young. Right now, they believe it was due to the flu. Some of our friends that live nearby are in Sunday School with them and went over to help one afternoon. So, I babysat their little girl, H, for a little bit. She had fun in her ballerina clothes playing with Hank & Rudder.
Finally, this weekend, my sweet friend, K, and her little (now grown up) girl, R, came out to visit! We got to go have lunch with Mom! I was there the day that R was born. It's so hard to believe that she is grown up.
In the next update, I'll try to show you the shelves that B put up in our hall closet...it's so impressive!!!
Friday, February 20, 2009
This is from his Mom this morning:
I just got off the phone with the doctor. It is not the news we
wanted to hear. The cancer is growing fast. It is growing in the
direction of the stomach again and also towards the liver. We need to
decide on some direction of therapy to start next week. PLEASE PRAY
FOR GUIDANCE FOR THE DOCTORS. We did receive some information today
that may help them direct their decision on the treatment. We had his
tumor sample sent to a lab which identifies which proteins it
expresses. This helps direct the therapy, making it targeted and more
effective. It highly expresses an EGFR receptor, which several of the
drugs out there are used to specifically treat tumors that express
this receptor. PLEASE PRAY THIS INFORMATION WILL HELP THE DOCTORS
WITH THEIR DECISIONS.
WE were planning on taking the kids to Hawaii for a much needed family
vacation. We're hoping we can still do this. Much prayer is needed.
Connor's school held a prayer mtg for Connor, where the children and
some of the parents prayed for him. The prayers of these sweet
children had to be like a beautiful aroma to God. I have to believe
that he is hearing their prayers. PLEASE CONTINUE TO PRAY FOR CONNOR
AND OUR FAMILY. WE NEED YOUR PRAYERS NOW MORE THAN EVER. WE NEED
GOD'S HEALING POWER!
"Dear friends, do not be surprised at the painful trial you are
suffering, as though something strange were happening to you. But
rejoice that you participate in the sufferings of Christ, so that you
may be overjoyed when His glory is revealed." I Peter 4:12-13
Thursday, February 19, 2009
I am in tears after watching this, thinking of a precious little girl that went to her first dance last weekend. Her Mommy was young and could have made this choice some 11-12 years ago, but our lives wouldn't be the same without her. Thank you, K, for our sweet little girl!!
Wednesday, February 18, 2009
B left town last week for a business meeting in Orlando. So, Mom came over to babysit since I'm not supposed to be left alone. We had fun girl time. I actually went almost five days without any seizures! Wow! It's such a relief! B came back home Saturday and we went to dinner to celebrate Valentine's Day. I had dessert at dinner that night and the seizures started back up the next morning (the docs believe carbs could play a role and want me to cut them out completely). I've had five or more every day since.
Before B left, he installed some shelves in one of our closets. While he was gone, I painted them and organized everything. I'll try to download the pics and post them soon. He's so handy!
B wakes up at 4:30 every morning and heads to work around 5:45a. So, Tuesday when I woke up around 6:30a and had a seizure and then noticed him in bed, I was so confused. I asked if he was okay. He said he felt awful and even his hair hurt. This is not like B. Even while going through chemo, he never acted as if he felt this bad. As soon as I woke up, we got him scheduled for a doc appt. assuming he had the flu. The doc agreed, did the test, and it was negative. Everyone was shocked. B had a fever and felt terrible. When we got home, he was even sicker...if you know what I mean...
He was home again today recovering. Hopefully, he will be able to get out for a little bit of work tomorrow. This is when I wish I could do more to help him. Pray that he heals quickly.
I'll try to post pics soon. Also, scroll down the page and look on the right...Pray for Nate. Be in special prayer for this family!!!
Thursday, February 12, 2009
Connor is slowly getting stronger day by day. He went to school
everyday this week, except for Monday, because he had the 24 hour
stomach virus. That was fun.
He had a follow-up appt with the surgeon Monday and we have decided to
keep the feeding tube in longer. He needs to gain back 7 pounds and he
cannot do that with the small amount of food he can eat each day. He
eats about 1/2 of what he used to eat and he needs to eat double the
amount of food to gain back his weight. This small stomach is sure
causing problems. He gets full so quickly, and then he gets a stomach
ache and/or throws up a little bit. We are not making much headway in
this area. PLEASE PRAY THAT HIS STOMACH WOULD HEAL, HE WOULD BE ABLE TO TAKE IN MORE CALORIES AND HE WOULD GAIN WEIGHT. PRAY WE CAN MAKE THIS PROGRESS WITHOUT THESE STOMACH ACHES. It is very frustrating to deal with this everyday, with everything else that is going on.
Connor's scans will be February 19 in Houston. We should have a
treatment plan by then. PLEASE PRAY THE SCANS SHOW NO GROWTH WITH THIS NEW AND OLD TUMOR. PRAY FOR GUIDANCE FOR CONNOR'S TREATMENT(S). We are still investigating alternative medicine approaches that will complement the conventional therapies. There are so many different directions that it is overwhelming to me at times. I am asking for WISDOM, as King Solomon did. PLEASE PRAY FOR WISDOM/DISCERNMENT FOR US.
My friend, MK (another mom at Connor's school), said this
story of Daniel in Daniel 2 reminded her of our situation and our
search for wisdom.
Daniel was asked by the king to interpret his dream. If not, Daniel
and his friends would be executed. God answered his prayer and He
showed Daniel the meaning of the King's dream. This is Daniel's prayer
in response to God's faithfulness.
'Praise be to the name of God for ever and ever;
wisdom and power are his.
He changes times and seasons;
he sets up kings and deposes them.
He gives wisdom to the wise
and knowledge to the discerning.
'He reveals deep and hidden things;
he knows what lies in darkness,
and light dwells with him.
'I thank and praise you, O God of my fathers:
You have given me wisdom and power,
you have made known to me what we asked of you,
you have made known to us the dream of the king.'
As she is doing, please pray Daniel 2 for us--that God would reveal
deep and hidden things and that the light that dwells with Him would
be given to us, so that we can walk in it as we seek the perfect
treatment plan for Connor. Praise God that all wisdom and power are
His, and plead for mercy with us that God will give Connor perfectly
Monday, February 9, 2009
On Saturday, we went to a b-day party for our friends' 2 year old. We were actually in the room at the birthing center right before he was born, I went to pick B up from a doc appt, and when we came back, baby C had been born. So, it was fun to get to celebrate his 2nd b-day.
The Lord blessed me on Saturday with another seizure free day! So, when the party was over, we drove downtown to the church where we got married.
I've struggled to remember our wedding and so I watch our wedding video quite often, hoping it will jog a memory or two. Anyway, I just knew that I would walk in to the sanctuary and it would all come flooding back into my memory.
The flood that came was tears. I couldn't hold them in. It just broke my heart that I stood there not too long ago and I don't remember it. So, I cried for quite a while. I hate that special memories like these are just gone. That is one of the parts of this health stuff that truly upsets me. I know it "doesn't matter." I've got B right here with me and that's what is important. However, I wanted to walk in and it just be magical. My sweet hubby even tried to re-enact it for me.
I did look at the pew where Granny sat and remembered how proud she was that she was able to walk (she had been in physical therapy/rehab learning to walk again after a stroke) part of the way down the aisle to light the Unity Candle. That is precious to me.
In our Christmas letter, we stated this:
Five years ago, these were the vows we repeated to each other
I, Ben/Meredith, take you to be my wedded wife/husband
And I do promise in covenant
Before God and these witnesses to be your loving and faithful husband/wife
In plenty and in want
In joy and in sorrow
In sickness and in health
As long as we both shall live
We’ve joked that we are ready for the plenty, the joy, the health, etc. However, the truth is that we feel in our five years of marriage with very tight budgets, sorrow, and sickness, we have experienced a more plentiful, joyous and healthy marriage than those married fifty plus years that have not faced struggles. We have learned what it means for the two to truly become one. We have learned what it means to live out the vows that we said to each other five years ago. We have had to flesh out all of the commitments that marriage requires and more. As crazy as it sounds, we are grateful.So, despite the yuckiness, I am grateful to have this amazing man by my side. Though sad to not actually remember the day, it was special to go and "re-create" the memory.
When we left, I still hadn't had any seizures and we were rejoicing. So, we decided to go have dinner. We went to Hook, Line, and Sinker, and ate outside. There are signs everywhere telling you not to feed the birds. B accidentally threw a piece of cracker on the ground and the birds took that as a dinner bell. So, we were quickly surrouned.
When we got in the truck, we could barely see through the windows as the birds had "decorated" them for us; as well as, the rest of the truck. So, that called for a stop at the gas station to make driving safe!
We even found a little coffee shop in Deep Ellum that was quaint and fun. Then, we got back to the house and felt so bad we had left the pups inside for so long. We didn't expect to be gone for very long at all. So, the minute we pulled in the drive, I ran in the house and let the dogs out. Next thing I knew, B was telling me to stay outside and don't try to come inside. Scary? Yes!
Finally, I hear him banging on something (obviously killing something). Next thing I know, camera is in hand and I'm taking pics of this:
Yes, when he came inside, there was a 10-12 inch Texas Brown Snake on Hank's food bowl. Gross!! That means I walked right past it. Shudder. We couldn't handle being in the house after this. So, we all loaded up and went for a ride.
The answer my friend is blowin' in the wind...
Y'all are so boring.
What are you lookin' at...?
Hank loves riding in the truck!!
The seizures were back in full force on Sunday and made for a long day. We just wish we understood why I go without them some days and why I have so many on other days. We are so ready for answers. Thank you all for your prayers!!
Sunday, February 8, 2009
He did decide that he liked the red dress. So, I got to wear that one. He took me the night before to SteinMart and we found some shoes to match for $9.99 & some earrings for $14.99!! So, we were able to pull it all together quickly.
Our Mom's want to see pics. So, here are some pics of us Friday night!!
I got very hungry that night. I'm allergic to tomatoes and the salad they served was covered in tomatoes, as was the entree. So, B went and spoke with the caterer to see if there was another option. She said, "absolutely." She came, grabbed my salad, and my plate, and told us that when they started serving dinner to tell them that she had my plate in the back. We just assumed she would bring out a salad with no tomatoes and I would get some of the tenderloin everyone else was having, but without the tomato-based sauce. Not so much. No salad ever came back and she brought me three spears of asparagus, half a red pepper, and some rice. So, I drank water!!! B was sweet and cut a few bites of meat out of the middle of his tenderloin for me so that I could have some protein. Such a sweetie!
Last year, he won the "Can do" award in the office. They told us it was the first time a Rookie had ever won the award. It has to do with your attitude, spirit, etc. It is voted on by the entire office. I'm so proud of my hubby. You can't win it two years in a row!!
After that award, B had his Managing Partner stay up and called his wife up (Connor's parents)! He was able to speak of the amazing family that exists at Northwestern Mutual. Then, he presented them with a gift that is the schedule of everyone that was praying for Connor during his surgery. Do you each remember that day? Many of you wrote in and prayed for him. If you wrote me that you were praying, your name is in the book they were given...
Thursday, February 5, 2009
One guy that was a few years ahead of me in high school said his Sunday School class has been praying for me for quite some time and he was excited to be able to share an update with them. Thus, I have been shedding a considerable amount of tears over the last few days, as well. I am so humbled that so many people are taking time out of their days to talk to the Lord on my behalf. Thank you!! May He bless you a thousand-fold!!
This weekend we have a party for B's office. The theme is American Idol. So, I intended to wear some Jason Castro dreads since last year's party was silly (70's Theme).
Yeah!! That's my baby!!!
Then, we got an e-mail from his boss saying it is Hollywood attire and gave us a description of what that means. Dread-head doesn't fit the category, it seems a bit more serious and glam. So, I started stressing since I can't just get in the car and drive to the store and buy a new dress and shoes.
I ran into a sweet friend at Kroger on Monday and she sent some adorable clothes over for me to try on yesterday. While I was waiting for B to bring those home, Mom actually came to pick me up and took me to lunch and then took me to Belk. I don't know that I've ever been there before, but B and I had been looking at a magazine trying to figure out Hollywood attire since my attire for this last year has basically been pajama pants, jeans, and hospital gowns, and saw that Belk had a more cost efficient version of a pretty dress a star had worn (if any of my teachers are reading this, sorry for the major run-on sentence there).
Anyway, we found two pretty dresses (that were very on sale!!!) and as we started to leave, I started to have a seizure. I handed the bag to Mom and tried to find a place to quickly lay down on the floor, out of the way. The lady that had been helping us immediately came over and began praying over me through the entire seizure. When it was over, she kept on...I hugged her to thank her (Mom and I were both sobbing babies at this point) and she kept on praying. Then, she made a pretty cool point when Mom told her we were praying for a miracle b/c the facts are that there is nothing the docs can do to treat these. She said, "those are the facts, but we know the TRUTH...by His wounds we are healed!!" Wow! She is also a part of a Belk prayer group that gets on the phone every morning and prays. So, they have added me to their prayer list. All this to say, shop at the Rockwall Belk!! Wow!!!
Then, we got back to the house and had a fashion show for B. I tried on all of the dresses I had purchased, the cute stuff the friend let me borrow, and then B found a dress hanging in the back of my closet and said he liked it the best! What? One of the dresses I got was long, red, and covers a good portion of my arms and covers my legs. Thus, covering up the fact that I haven't been able to work out in a super long time and I need a tan, like these guys are getting at Northpark Mall:
So, I have no idea what I am going to wear this weekend. I need shoes for the dress, jewelry, etc. OH, and I need some hair!!!
For those that have also been praying for our sweet puppy, Hank, he is doing much better. We had to start him on Phenobarbital for his seizures a couple weeks ago. He hasn't had any seizures since he started the medicine! So, Praise the Lord, meds work for him! Isn't he so cute?
Just have to throw in a pic of my good lookin' hubby. I sure love this man:
Through this journey we've been on, people tell us to read Job. I've not done it because I "know" it's about suffering, yet bringing God glory. However, the other day, I felt the Lord telling me to stop being prideful and read a little deeper, that He had some fun for me in His word. This is what I found:
At this, Job got up and tore his robe and shaved his head. Then he fell to the ground in worship and said:
"Naked I came from my mother's womb,
and naked I will depart.
The LORD gave and the LORD has taken away;
may the name of the LORD be praised."
In all this, Job did not sin by charging God with wrongdoing.Job 1:20-22
May the Lord always get the glory, shaved head and all!!!