Friday, January 30, 2009
NBC has just chosen to remove/not allow this commercial to air during the Super Bowl. Pause the music on the side of the blog...
Contact NBC and let them know that you are saddened by this.
At the release of this news, they still hadn't sold all of the commercial spots and so there is still a chance it can be added back to the commercials.
Wednesday, January 28, 2009
Do you remember back in December when we were concerned about insurance covering the IV seizure med that we had to pay for out of pocket and they said it probably wouldn't happen? Here is the original post. Well, I just went out to the mailbox and all Praise to Jesus and thanks to M at the insurance company, there was a check in there to cover the full amount! Thank you, Lord!!!
I assumed we were long past the point of getting anything to happen and was going to attempt to reach out to them again this week and just see if any progress had been made on the review or if we needed to provide any more documentation! However, check in the mailbox to cover the full amount!! Thank you, Jesus!!
Thank you, prayer warriors, for lifting this up to our King!!
Monday, January 26, 2009
The trip started with a visit to the Neurosurgeon who basically said, "Have a nice day, there's really not a lot we can do for you at this point. Just try to get on with your life." They feel the seizures are too deep to do any of the surgeries they had originally discussed and are scared to go that deep in my brain.
He said he doesn't know that it would really work for me, but the one last surgical option he would consider is a Vagus Nerve Stimulator (VNS). Basically, it is like a pacemaker for the brain. It sends little electrical impulses all day long to your brain in hopes of eliminating seizures. You are not able to stop meds, it creates a lot of extra scars, and makes you hoarse (there goes my chances at American Idol)! So, they want to hold off on that for a while longer.
Then, we met with my Epileptologist. We didn't take a pic with him this time. He basically said that he didn't see many options for us other than maybe trying the Ketogenic/Modified Atkins Diet. I lost it at that point and just started to cry. I'm just ready for this to be over. I told him that at some point we would love to have kids, but at least one of the meds I'm on is too dangerous for a pregnancy. The adoption can't proceed until I've been seizure free for an "undetermined" amount of time. It's hard to get out of the house not being able to drive and I'm still not good at asking for rides. So, there are many times that I just feel stuck in the house. I had hoped that I would arrive in his clinic and he would say that he had discovered some little known secret that would cure it all. Instead, he was precious and hugged me and said he was sorry.
He told us to go ahead and try to get pregnant, maybe that would stop the seizures (no guarantee, but maybe). Obviously, that is a risk we are not willing to take as that is not addressing the problem. So, I left extremely discouraged.
We are now looking in to the Ketogenic Diet. They refer to the one I would do as the Modified Atkins Diet. I will need to go back to Houston in a few weeks and meet with the Dietitian to start the diet. However, we are trying to institute as much of it as possible now...
The next day, we had B's appts. at MD Anderson. Praise Jesus, still Cancer FREE!!
At this point, I had actually gone three days without any seizures. No idea why (Jesus!)!!!
While we were waiting for the doc to come in, the scheduler (I hope I'm giving her the right title-I think she does a lot more than I just gave her credit for) stepped in to help us with something. When she heard our story, she just started proclaiming the name of Jesus and His healing power. She had me in tears!! Wow! What an amazing woman.
Praise Jesus, my hubby is still Cancer FREE!!!
We then met up with our sweet friends:
I got some special hugs from Miss A!!
Look at that sweet smile!!
Then, we went and had dinner at PF Chang's in The Woodlands.
On our way out of town, we said a quick hello/good-bye to Sam (Houston)....
Though I went a few days without seizures while in Houston, they started back up again for a few days. Then, I went a few more days without any and they started back up again. The most I seem to have is about seven a day. So, that is better than 10 or 15.
I'll try to keep you better updated....just wanted to catch you up on the Houston trip from a few weeks ago. Thank you for all of your prayers!
I Peter 4:12-13, "Dear friends, don't be surprised at the fiery trials you are going through, as if something strange were happening to you. Instead, be very glad--for these trials make you partners with Christ in his suffering, so that you will have the wonderful joy of seeing his glory when it is revealed to all the world." (NLT)
John 16:33, "'I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.'"(NIV)
Friday, January 23, 2009
We are home! Home sweet home! Connor is recuperating so well. He has not needed any pain medicine for about 30 hours now. He's eating well. Sitting up and moving around better. He even went down the slide in our backyard. God is healing him. Thank you for your prayers! He should be back at school on Monday.
Now that we have recovered from the shock of the pathology report saying the surgeon didn't get all of the new tumor as we had thought, we are back in fighting mode.
I'm cruising the internet (along with some of my friends, thanks C) and have found some interesting treatments for this cancer. These new treatments can work alongside the chemo. They attack the cancer from different angles. This will be important, since chemo alone doesn't do the trick. Please be in prayer for our direction. We really need God's guidance. We may be heading back to Boston, Cincinnati or Houston. Pray for God's continued healing. We're expecting a miracle. God's performed so many miracles in Connor's life. What's one more?
Thank you for your constant prayers, support and love for us. Your prayers are enfolding us every day. Thank you for being the "hands and feet" of Christ.
35 "I was hungry, and you gave me food. I was thirsty, and you gave me something to drink. I was alone and away from home, and you invited me into your house. 36 I was without clothes, and you gave me something to wear. I was sick, and you cared for me. I was in prison, and you visited me.'
37 "Then the good people will answer, 'Lord, when did we see you hungry and give you food, or thirsty and give you something to drink? 38 When did we see you alone and away from home and invite you into our house? When did we see you without clothes and give you something to wear? 39 When did we see you sick or in prison and care for you?'
40 "Then the King will answer, 'I tell you the truth, anything you did for even the least of my people here, you also did for me.'
Tuesday, January 20, 2009
Connor with friend
Tuesday, January 20, 2009 2:00 PM CST
Connor is making great progress. Sunday, they took him off his morphine pump and took out his iv's, but they kept his port accessed. He started receiving Pediasure in his feeding tube, also. Yesterday, he got his ng (nose) tube out, he started drinking liquids and he had a bowel movement. Everything seems to be working well as far as his digestive system goes. He has been up walking around a lot, and he played video games in the play room. Today, they should take out the drainage tube, and he can start drinking more complex liquids like smoothies, soup, etc. If things continue to progress well, he will be released Thursday morning! Yeah! Praise God! We are ready to skip on out of here. Although we have enjoyed visits from family and friends in the hospital, there's no place like home.
PLEASE PRAY THAT WE CAN FLY HOME ON THURSDAY. PRAY FOR GREAT PATHOLOGY RESULTS. STILL WAITING ON THOSE. PRAY FOR IMPROVED STRENGTH AND WEIGHT GAIN FOR CONNOR. HE'S LOST 7 POUNDS. We'll have to give him some of those protein drinks that body builders drink. We'll bulk him up in no time.
We can't thank all of you enough for your love and support. WE have definitely felt your prayers. PLEASE CONTINUE TO THANK GOD FOR HIS CONTINUOUS MIRACLES IN CONNOR'S LIFE, AND PRAY FOR CONNOR'S COMPLETE HEALING ON EARTH. PRAY THAT [DAD} AND I WILL GIVE GOD THE GLORY FOR SAVING OUR SON ONCE MORE.
"I waited patiently for the Lord; He turned to me and heard my cry. He lifted me out of the slimy pit, out of the mud and mire; He set my feet on a rock and gave me a firm place to stand. He put a new song in my mouth, a hymn of praise to our God. Many will see and fear and put their trust in the Lord. Blessed is the man who makes the Lord his trust. Many, O Lord, are the wonders you have done....too many to declare." Psalm 40:1-5
Friday, January 16, 2009
This was written by his Mom Thursday around 6:00 p.m.
Connor has four tubes in him...the feeding tube, nose tube, drainage tube and catheter. He hates the nose tube, but it needs to stay in for a few more days until his stomach drainage is clear and slowing.
Yesterday, the surgeon said he felt like he had removed all the tumor and he was trying to get more of the Neuroblastoma tumor out. He was quite disappointed he couldn't get more of the NB tumor out. He said it was hard to distinguish the line dividing the two tumors. It was unclear, but he felt like he got the new tumor out. The pathology report will help us confirm that he got it all out.
The oncologist said she was astounded by the news from the surgeon...above and beyond what anyone expected. Doesn't that sound like our God, able to do exceedingly above all we could ask or think? Connor's outlook Tuesday did not look good. The oncologist was much more hopeful last night (Wed.). The good news is that Connor can receive some chemotherapy if they feel like he needs some to make sure all of the cancer is dead. Hoping to have the pathology report next week, but it may take longer. They have to go thru each sample meticulously.
The surgeon went over the details of the surgery with us. The tumor had grown quickly since the last CT scan on Dec. 23. It had eroded further into the stomach, which was causing all this heavy bleeding. It was BAD! Don't know how much longer he would have lasted. We are so grateful to God that he worked out all the details to get us to this surgeon yesterday. Everything fell into place (another surgery was cancelled for Dr. N, so he just put Connor in his place). Thank you, God. The tumor had also eroded a little into the esophagus, so this presented an unexpected challenge for the surgeon. He removed about 1/3 of Connor's stomach and removed a small part of the esophagus (the part that connects to the stomach). Removing part of the esophagus made the opening into the stomach way too small, so he had to create a new opening into the stomach from the esophagus. This will take awhile to heal. I guess Connor got his stomach stapled. He'll have to eat small meals for awhile now until his stomach stretches to accommodate more food.
When we were discussing the dreary outlook on Tuesday with the Oncologist, we felt like the Oncologist was pronouncing ANOTHER death sentence. She reminded us that through the years many doctors or people didn't expect Connor to live thru that first year, let alone 3 1/2 years from diagnosis. She said he's already beat the odds, proved so many wrong, so we must be doing something right. We should not give up hope. She's right. We were doing something right. Believing and trusting in our one and only Awesome God, who loves us more than we can imagine!
We should be here for 7-10 days. Please continue to pray for his healing and pray that the surgeon got all the new tumor. Thank you so much for all your prayers! We are humbled by your faithfulness to pray for our son! We know that is why we saw another miracle yesterday. There were so many knocking on Heaven's Door, that God answered our prayers. Thank you from the bottom of our hearts.
Thank you to those that came to the hospital to wait with us. Your presence was so comforting during the long, nail-biting wait.
Praise God for His mercies are new every morning!
Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? Who of you by worrying can add a single hour to his life?
Praise you, Jesus! Thank you, Lord!!!
Thursday, January 15, 2009
Connor’s doing pretty good today. He spent the night in ICU (which meant little sleep for his Mom!). He had “dry heaves” this morning so they gave him some medication to ease that, and the area around his incision was hurting so they gave him some morphine for that. He’s pretty lethargic and is watching TV. His electrolytes are off (no surprise with dry heaves), and Mom is hoping the next blood draw they do around noon today will show they’re back in line. If they are, she’s hoping they’ll transfer him to a regular room by tonight. It’s Dad’s turn to stay overnight with him, so pray for better electrolytes!
He’ll probably be in the hospital for another week or so. It may take that long to get the path report results, too. Keep praying that the path report is clean.
Wednesday, January 14, 2009
This is the report we just received from Connor's surgery:
Surgery only took 8-1/2 hours. The surgeon said he’s pretty sure he got it all! He’s waiting on a path report to be sure, but he was confident. He even was able to remove some more of the original NB (neuroblastoma) tumor in his abdomen.
He did some reconstruction and rerouting, similar to what they have to do in gastric bypass surgery, which tells me he did have to remove some of his stomach. Please lift up a special thank you prayer for Dr. Nuchtern.We’re all euphoric, thanking Jesus and praising God for this miracle. Thank you, everyone, for your fervent prayers. There is definitely power in prayer!
They learned this type of tumor usually develops 8-12 years after radiation, and it showed up in Connor 2-1/2 years later. Also, the Houston hospital team has never seen one of these – there are only about 20 like them nationwide. That’s how rare this thing is!
We know God is in control and His plan for Connor is perfect. We trust Him with the outcome of this day and this surgery. Please pray without ceasing for positive results. It will be late tonight before they’re done.
They’ve told them Connor’s doing good, things are stable and they’re making progress. But it’s going to take a while.Jack Graham, the Pastor at Prestonwood Baptist Church where they are members, and Mike Buster from the church are there with his dad, so we know he’s in good hands. His mom said they’re laughing up a storm! Praise God for good friends!
Well, he started feeling a little yucky a few weeks back and they have since found another tumor in his stomach. While B and I were in Houston last week, we actually got to spend a little time with them in between my appointments while he was getting a blood transfusion. After his transfusion, they did a biopsy to see what kind of tumor this was....
Turns out that the new mass is a malignant peripheral nerve sheath tumor. It is a form of cancer of the connective tissue surrounding the nerves. It can be caused by radiation. It has grown 2-2.75 inches since August and it's continuing to grow quickly.
It's much bigger than they first thought. Surgery is the only way they know to cure it and the doctor's have given a scary prognosis to his parents that if they can't get every last bit of it, they feel his chances of survival are quite slim. They might even need to remove part of his stomach to make sure they have excised every last bit of it.
The surgery is today in Houston and should be 10-12 hours. We need big time prayer for Connor, his parents, and the docs. Through B's office, we have set up a "prayer calendar" and have people signing up to pray in 10 minute increments all day long (from 7a-9p). It's special watching B's office jump at this opportunity and fill the calendar. However, I think it would be cool if any of you would like to be added to the calendar, too. The biggest needs we have are at the :10s and :40s. So, if you have my e-mail, you can e-mail me. Otherwise, leave a comment with your name and the times you want to sign up to pray for their family and I'll add you to the calendar of Connor's Prayer Warriors!!!
Monday, January 12, 2009
I have come to quite the realization this last week. As much as I would like to believe otherwise, my Identity has not been found in Christ. It has been found in my accomplishments at work, home, etc. I have looked to outward accolades for my true value and worth.
I was not raised this way. If I was ever complimented on outward beauty, Mom responded with, "she's even more beautiful on the inside." My Mom always told me that what mattered most was what was on the inside. I've always believed it, wholeheartedly. However, it's not until you are placed in the fire and all of those outward signs of beauty and the worldly accomplishments are removed (burned), that you see what remains.
It's when your hair is cut off, that you realize you still held to that as a sign of beauty. It's when you can no longer work and receive accolades for your sales numbers, that you realize you found worth in your manager saying, "way to go." It's when the sound of a vacuum is too loud for you to vacuum the floor that you realize just seeing the lines on the floor, the difference that makes, convinces you that you've done something worthwhile for the day(not to mention it's nice to have a clean house). Even wanting to drive to the hospital to love on other patients that are in the same boat as me, but no driving until I'm seizure free for six months.
Through this journey, many people have told us that they have been inspired. I haven't believed it, because I haven't seen it. When B was diagnosed with cancer, two people came to know the Lord through his journey (from Sept. to Dec. 2006). They will now have eternity forever with our Savior! Wow!!! We got to see that.
Through this super long journey (Mar. 2006-present), I have not seen any of that. However, this week, the Lord has revealed to me, that my identity is not in my hair, my #s at work, being able to vacuum my house, or even being able to count the # of people that come to know the Lord through this journey. My identity is in Christ.
I have been crucified with Christ and I no longer live, but Christ lives in me. The life I live in the body, I live by faith in the Son of God, who loved me and gave himself for me.
Does this mean that I will do everything right from here on out and not make mistakes? No way, Jose! This means I will strive to live for His glory, but there is forgiveness because of His Son and His sacrifice for you and me on the cross.
Do I know what will happen tomorrow? Am I going to have ten seizures? Am I going to have none? Will I be healed forever? Will I get to vacuum? I have no idea. I will just continue to pray believing that He is a God of healing, no matter what I can see.
Faith is being sure of what we hope for and certain of what we do not see.
Friday, January 9, 2009
I got to drive today! Yippee!! It was so fun!! Oh my goodness! Can we say exhilarating?
I didn't have a seizure on Wednesday, Thursday, and I haven't had any today. Thank you, Jesus! There is no explanation. Nothing has changed. We are currently in Houston for all of our appts. Mine were yesterday with all of the docs. I'll do a separate post on that later. We are at MD Anderson today with B for his.
Start praying right now for B's scans that he is still cancer FREE!! They just gave him the contrast and he's drinking the Barium. So, he will have his CT in just a little bit. We probably won't get the results today, but we will meet with his doc this afternoon. So, continued healing, Lord, please!!
Back to the driving...we stayed with one of the guy's that was in our wedding and in B's outfit in the Corps. He lives in one of those cool new gated condo thing-ies (yep, it's a word) where there are a bunch of 2-3 story condos all in a row and then facing each other. So, parking is a challenge if you are a visitor. We had to park fairly far away last night.
This morning, I was ready before B (yes, I get ready very quickly without hair) and so I offered to go get the truck. I drove it a total of about 80 yds., but 2+ days without seizures seemed like it warranted a driving experience!!
When I came back in the house, I think I was like a 16-year old that has just received my license. You should have seen how excited I was...again, I think I drove 80 yds. The truth is I drove forward about 10 ft and backed up about 80 yds. Anyway, I drove and it felt so good!! Yeah!!
So, let's pray that seizures go away for good because driving is fun! Let's also pray B continues to be cancer FREE!!! They just called him back for his scans! Go God! Be the hero, Lord!!!
Tuesday, January 6, 2009
Within seconds, I found Hank on the floor having a seizure. He had been asleep on the bed and must have tried to get off the bed and fell and then hit the bathroom door and slammed it shut, all during the seizure. He continued to seize for another ten minutes or so. My sweet neighbor that usually takes me to the grocery store came and picked me up on the spur of the moment and rushed us up to the vet. They ran some labs and want to probably start him on some anti-seizure meds this week.
Here's the crazy part...Hank's seizures started around the same time that mine did. However, he doesn't have them very often. Recently, we have noticed that when I go a few days without any (like right after the surgery or right after the IV treatment), he has a few. Or, the fewer I have, the more he has. Call it weird, laugh if you want, but the vet's office entertained the idea, too. As B said today, you just can't write this stuff.
So, it has been a crazy day. I woke up to his seizure, had to throw clothes on, had some seizures of my own, had to rush to the vet, had another seizure myself, and then had to get back home to meet our CPA to help us pull all of our tax stuff together since it will be different this year with me on disability. Then, Praise the Lord, MD Anderson contacted us and they were able to get B scheduled for all of his appts on Friday. So, we had to reschedule a bunch of stuff we had cancelled since Mom was going to take me to Houston. Now, I will have all my appts with the neurosurgeon, epileptologists, etc., on Thursday and B will have his stuff on Friday. This is a Praise to be able to knock it out in one trip (thank you, Prayer Warriors). They were telling us it couldn't be done and we finally found a lady that made it happen!!!
This was a view of Hank all day long. This is how I feel after each seizure, but don't always get to curl up in a cozy chair like him.
After B's final appt. for work today, he picked me up and took me to his office to pick up our yummy dinner that one of the sweet ladies up there made for us...it was a Mandarin Orange Salad with Candied Almonds (my favorite) and yummy Apricot Chicken. As we were leaving our neighborhood, this was what we saw in the sky. B said God was smiling, I thought he was winking. What do you think?
We are finally getting in bed and ready to get some rest hoping for a calmer wake up in the morning.
Monday, January 5, 2009
It also poured down rain amidst the freezing temperatures. The dogs needed to go outside so badly, but I wouldn't let them while it was raining. As soon as it stopped, I let them out to potty quickly. This is what I found when I got to the back door to let them in...
We also lost power for almost four hours today. So, my sweet friend, M, & her little girl, H, called and took me to the grocery store!! I think I would have gone crazy in the house for that long without power since reading seems to trigger seizures.
Sunday, January 4, 2009
There I go trying to come up with words. I haven't posted in a while and I have heard from so many of you, checking in to make sure we are okay. I even received a call from a special friend in California today. You know who you are. Thank you!
At first, no posts were for good reasons. I wasn't having many seizures and was staying busy. Then, I was having a lot after Christmas and B & I decided that getting the docs to do much in the way of the IV therapy over the holidays was going to be tough.
So, last Sunday, we decided to increase the dosage of one of my meds (the doc had previously given me permission to do so, if I felt it was necessary). The problem with this is that in the past, when I have increased the meds, I have typically gone a few days with fewer seizures and then they start back up again (it's like my body/brain develops a tolerance). Then, the docs want to keep increasing the dose of meds. They eventually get to a dose that is considered to be too high and decide they either need to hospitalize me or switch meds. Having already been on eight or more meds, I don't want to go down this road again, but we felt with the holidays, this was the best avenue.
I went a couple of days with just one or two seizures a day after the increase in meds. Per my standards, this is good compared to ten or more per day (what I was having around Christmas). Per the docs, one or two is still too many. It also means I am still a long way from driving which "drives" me crazy.
Then, I started having a bunch of seizures (which is usually when I have time to sit down and post b/c I don't have energy to do much more), but we had a lot of stuff on our plates and I just couldn't and I would have preferred to post good news. So, I'll try to catch everyone up from the last post.
Last Monday, one of my college roomies, K, made the trek out here and took me to the grocery store!! We had so much fun! Usually one of our sweet neighbors takes me or B will. I am no fun to shop with...B knows that it is best for our marriage to send me in alone. I go with calculator and coupons in hand. Being home all the time now, I do all of the online coupon stuff and try to save as much as I can on each grocery trip. So, all of my grocery trips are alone and I meet my ride at the front of the store when I have completed the shopping. I warned her that this could be dangerous. However, she wanted to accompany me through the entire store. K and I had a good time. She manned the calculator for me and we knocked out the grocery list! I think she might even be on board now with savin' extra at the grocery store!!
K also was known in college for being a wonderful chef and baker. The girl has talent in the kitchen. She made us some meals to throw in the freezer. So sweet. We had fun catching up and got to have some special time praying together before she left. We also got to take a pic together. I sure miss getting to spend time with her.
I honestly can't remember where we were headed, but I took these pics while B was driving and so they aren't great. The sunset was so pretty, though. I just had to capture it.
The seizures seem to have returned and with a bit of a vengeance. I seem to be shaking a bit more, kind of like I'm shivering as if I were cold. We go back to Houston this week for the follow up with the Neurosurgeon and we're hoping to get in with the epileptologist.
B was also supposed to have his follow-ups this week at MD Anderson and they were scheduled for the wrong days. So, we are praying they can get them rescheduled for the days we will be in Houston.
My head still hurts quite a bit at some of the incision sites. So, I'm hoping there are some answers to that and the pain will be resolved soon. As I was telling someone at church today, I just wish that we would get there and the docs would say they couldn't sleep all week because they had figured it out and knew exactly what was going on...wouldn't that be nice? I'm just ready to feel better and have energy. I want to be able to communicate with adults and feel like an adult. I feel like I stumble so often over my words and just feel so reliant upon everyone else to accomplish anything.
I've tried to get a bunch done this last week around the house. Mom took me to Lowe's to try to find some organizational stuff for the pantry. They didn't have what I was looking for, but we ran into this sweet man from our church that had exactly what we were looking for that he wasn't using any more. He brought it over that night. We got it up this week. We've tried to organize the garage, our closet, the kitchen, and other parts of the house this week. I'm just trying to feel like I'm accomplishing some goals!!!
Oh, and New Years Eve!!! A sweet friend from high school picked me up and we went to get our nails done. Such a fun treat and good girl time! Then, B and I went to dinner and tried to find some sparkling grape juice. We got back home and made it as far as the ball dropping in NYC. B said I was snoring a few minutes after that...he then woke me up around 11:45p and we got in bed! Happy 2009 to all of you!!!
Thank you all for checking in and praying! May all of this bring glory to the Lord!!!
To you, O LORD, I lift up my soul;
in you I trust, O my God.
Do not let me be put to shame,
nor let my enemies triumph over me.
Show me your ways, O LORD,
teach me your paths;
guide me in your truth and teach me,
for you are God my Savior,
and my hope is in you all day long.
Remember, O LORD, your great mercy and love,
for they are from of old.
My eyes are ever on the LORD,
for only he will release my feet from the snare.
Turn to me and be gracious to me,
for I am lonely and afflicted.
The troubles of my heart have multiplied;
free me from my anguish.
Look upon my affliction and my distress
and take away all my sins.
Guard my life and rescue me;
let me not be put to shame,
for I take refuge in you.
May integrity and uprightness protect me,
because my hope is in you.
Psalm 25:1-2, 4-6,15-21