Tuesday, December 28, 2010

Great Day with Great Results!

Today was a super tiring day, but in the end, it was all good! Mark had his profusion MRI this morning at Baylor North Park. He did fine with it since he had taken some medication to calm his nerves. Once he went back, the tears fell for me, but my mom was with me and comforted me and then I was much better. I don’t know really how to describe the emotions I was having at that point. I know that when Mark was filling out the paperwork and it asked why he was having this scan, he wrote, “Routine for brain cancer”. It just seemed weird. Almost like a dream or something. I have known for over 6 months that Mark has brain cancer, but sometimes it still sounds so crazy to hear that. So I did a real quick, “How could this happen to Mark? Why did it happen to him? How can he have brain cancer when he has not been really sick before? Why BRAIN cancer instead of some other cancer?” Then I was ready to just think as positive as I could, pray, and wait. I spent the hour that Mark was doing the scan cleaning out my purse, talking to my mom and showing her apps on my phone that I think she would like for her new iTouch. Mark looked good when he came out. He was a little loopy and tripped a little on things along the way, but overall he was feeling pretty good. We decided to go to North Park mall across the street for lunch. We all ate in the food court and visited a little. Then we decided to go ahead and go to Baylor Dallas to wait for Mark’s appointment time. We didn’t think to bring previous scans with us, so we dropped off the one he just had done with the office and told them we didn’t bring the last ones. They had to do some work to do a comparison without us taking those. (We promised to never forget past scans again). We went to a lounge area in the hospital and Mark kind of snoozed off and on while my mom and I worked on individual things we had brought with us. Then it was time to go to the doctor’s office. The exam part of the appointment went just fine and Mark answered the questions correctly and did all of the physical things required of him. Then we had to wait a really long time for the doctor to come in. I don’t know how much time it really was, but it seemed like hours. (It was probably 15 minutes or so). I started to pace the floor and I found a brochure for a place that would be perfect for our family and especially our boys. It is like a club for people that have cancer or have family members with cancer. They have sessions for kids that would be great for the boys and a lot of special activities. They have a day camp in the summer for kids and they host a lot of other fun events. The family can just go to this place and the adults can visit with each other while the kids have supervised play. It sounded great! And then I saw that it is FREE! I am so happy I got up to pace today so that I could find out about this place. The doctor finally came in and scolded apologized for taking so long but said it was because we didn’t bring the old scans. She started to put up an MRI sheet on the light board and said, “This is what shows us that the tumor is NOT growing…” I was so very relieved. I know Mark and my mom were too, but I can’t speak for their exact feelings. I just felt so much joy! I wanted to get up and shout “Yea!” but I restrained myself. The doctor showed us how this test today shows if there is any blood flow near the cancer site, and showed us how Mark’s had NO color near that site or anywhere else on his brain! She said that there is no change at all in the scans from last time, which is the best news we can hope for, realistically. (To be honest, I prayed hard last night that God would prove His might by completely filling in the space so that people would have no choice but to give God the glory. I don’t know His reasoning, but He sees the big picture and I don’t, so I will just trust Him.) Anyway, the doctor explained that Mark has been on Chemo for 6 months now, and could technically come off of it now. We all agreed that the Chemo could be the sole cause for the tumor not being able to grow anymore, so we didn’t want to take even a little risk of recurrence. So, for now, Mark will continue taking Chemo 7 days on and 7 days off and he was very slowly start weaning down on some of his anti-seizure meds. Mark is now working on finding the best prices for our trip to London/Paris next month!
The good news didn’t stop at the appointment. When we got home, Mark was surprised with a phone call from Tracy Jones! That is the police officer that he wants so badly to get to meet that we see on TV a lot. He said she was very nice on the phone and they made arrangements for him to get to ride with her next weekend! Mark is more excited than you can imagine about that. Thank you so much to my friend, Krista, and her friend, who was so kind in working this out for him.
Alright, I had such an emotional day that I am feeling physically tired now, so I think I’ll go to bed now. Goodnight to you all and thank you ALL so very much for your prayers! We love you!

Wednesday, December 22, 2010

Special Request

This is a special request for prayer. We need peace in our hearts! We are enjoying this time preparing for Christmas as much as possible, but we have Mark’s next MRI looming above us. I would like to ask everybody to pray for peace for our family. As a special request, I would like to ask as many people as possible to leave a comment to this post. It would be especially great if you could post your prayer for Mark to read. Even if you don’t post a prayer, could you please post the words “I commit”? It is a commitment to pray for Mark on December 28th. That is the day he will have his profusion MRI. That will tell us if there is any new tumor growth or regrowth. What they find will determine if there will be any change in his treatment plan. If a new tumor or regrowth is found, Mark would probably need to have another brain surgery. Also, if there is new growth while he is on Chemo, it could dramatically shorten the amount of time he has here on earth with us. So I certainly ask that you please pray for good results, specifically, a clear MRI. Mostly, please pray for peace. Mark is nervous. He will be taking Ativan before the scan to calm him, but I will be driving, so I can’t take anything like that and I tend to get really worked up about things. So, for a Christmas present for both of us, I would like to see a ton of comments with people committing to have us in their thoughts and prayers on the 28th. I don’t like to ask for things, but I always ask for prayer. I wouldn’t normally ask for a visual confirmation in the form of a comment to a blog post, but I know this would be an amazing gift to Mark. I would love to open the blog on Christmas morning and find that hundreds of people are praying for Mark and our family. So, if you could, please pass along the link to our blog to everybody you know and ask them to do the same. We know that prayer works. If you are reading this because a friend sent you to this site, I want to say a special thank you for praying for our family. Even if you don’t know us, please know that we love you for your commitment to pray for our family! Have a very merry Christmas and God bless you all!

Wish List

Mark sent me a message the other day telling me that he really doesn’t need any material things for Christmas (he is getting some, though!). He said he has been thinking a lot lately about the things he would really like to experience before he dies. He did ask family to just give him money this year instead of other gifts because he wants to be able to travel some places with me. I know a lot of people have several things they would like to experience/accomplish in their life time. Mark has always had a list of things, but he has realized now how short life can really be. I attended a service last week for a lady in Plano who had Glioblastoma. I know that made me really think a lot more about life and how quickly we can leave here and I guess it has done the same for Mark. Anyway, Mark sent in his message 4 things he would really like to do before he is called home. Here is what he sent:

1) Meet George W. Bush
2) Meet Dr. James Dobson
3) Go on a ride-along in a cop car
4) Meet/ride along with a specific lady we see on the show “Police Women of Dallas”

He sent the list to his parents as well. I guess that his mom had the same sense of urgency to make these things happen that I did. Without talking to each other, we each went right to work. :) Mark’s mom has written a letter to President Bush to see if it would be possible for Mark to meet him. She has a mutual friend with him and also has some personal ties to his wife because she is from Midland and went to the same school, a year ahead, of Laura. That would just be so amazing for it to work out, so I’m going to pray extra hard for that one! I called a lady that follows my blog who is with Focus on the Family. Although Dr. Dobson is no longer with Focus, she is working there to see if she can help me get something worked out so that Mark can meet him. A friend of mine said she knows somebody that could probably set us up with a ride along with a police officer. I’m not sure how to begin with the 4th request. Do any of you happen to know Sergeant Tracy Jones? :)

I hope that we are able to make those things happen for Mark, and I especially pray that God gives us a LOT of time to do them! I had a particularly hard time after going to the service for the lady in Plano. I know her family is happy that she was able to survive almost 5 years with Glioblastoma. She passed away last Friday and last Sunday was 5 years since the day she was diagnosed. It is rare for people to survive that long with this cancer, since the prognosis is only 14 months. I always say how happy I am that Mark is doing so well and I feel like he will certainly live longer than the 14 months. After this lady passed away, however, I wasn’t feeling so grateful. I felt very angry with cancer. (I still have not been angry with God. I still know that He sees the big picture, and I can’t. He has proven that He will take care of us no matter what the timing will be. But, I get very mad at stupid cancer!) I cried and cried until I felt like I couldn’t breathe. I wanted to scream that I don’t care if Mark survives TEN years, IT IS NOT ENOUGH!! I felt like being a child and stomping my foot hard on the ground and yelling, “Not FAIR!” This can’t be happening to my sweet husband. He is such a good person. He is a man after God’s own heart. He is an amazing father and a wonderful husband. He works hard and honestly. He cares about other people. He is loving and kind. So WHY does HE have terminal brain cancer? He doesn’t smoke, he doesn’t drink, he isn’t overweight. He is very healthy other than the cancer. I just kept asking why and thinking that it is not fair. I felt very angry for several days. I finally came back to the point where I can be thankful for each day. Every day IS a blessing and a gift. Mark reminded me that we just have to look forward to as much future as we may have and live each day to the fullest and try to accomplish everything we can while we have the time.

Friday, December 10, 2010

Date Night!

I am so very excited about tonight! Mark made plans for his parents to come watch the boys and he made reservations at a restaurant! It’s been a long time since we had a date! I told the boys about it when I picked them up from school and Colin said, “Mommy you are going to need to look beautiful!” I told him I bought a new top today for me to wear and he said, “A beautiful one?” He can be so cute!

Speaking of dates… I think I’m gonna have to watch out for Carter. I saw a little girl talking to him after school and when it was time for the teacher to walk him to the car, she gave him a big hug and a kiss on the head! When the teacher got to the car, she was just giddy with the sweetness of what she just saw. I said, “Is that Victoria that just kissed him?” She said it was. I thought it was because one day I found a “love note” in Carter’s backpack. I asked him who gave it to him. He said, “Victoria. She always loves me!” So cute!

I talked to the school counselor today to see if I could get some information from her and see if she could kind observe the boys for me and see if she could let me know if/when she feels like they may need some help dealing with everything going on. She told me that she was already aware of our situation because of their wonderful teachers and the awesome principal of the school. She has talked to them some and she told me that there were a few days when Carter was having a hard time at P.E. He stayed with her during that time and drew pictures and told her about his daddy being sick. I wasn’t aware of any of this until now, but I am so thankful that he has such amazing people looking out for him while he is at school. Also, the counselor gave me some information about a lady in Frisco that has been in my situation. Her husband passed away from brain cancer and she has young children as well. I am looking forward to getting in contact with her and having a chance to visit with her.

Back to Mark… He is doing GREAT right now!! He went in to work each day this week! It’s crazy. If you just look at him, you would have no idea that he had such a terrible cancer. We are so blessed with how well he is doing now. We know the reality is that this cancer will kill him (unless God provides a miracle which we are not giving up on!), but we know that God is blessing us with some good quality time before then. Some of our other friends with this cancer, wouldn’t dream of being able to go to work. They can just barely function at all at this point. Mark looks healthy and feels pretty good. He gets tired easily, especially on chemo weeks, but it’s nothing too serious. His last neurological exam was so good that the doctor said she would let us wait until after Christmas for the next MRI. He will have that on the 27th. This will be the special profusion one that will show them if there is any blood flow going to the lit up area, which would indicate that it is tumor regrowth. That would be bad because it would mean that it is growing despite of chemo, which means that it is chemo resistant. SO, please pray for them to see NO blood flow to that area, which would mean it is just scar tissue caused from the radiation. I try to never get my hopes up too much, but I really have a feeling that it is going to be a good scan this time.

As always, we appreciate all of the prayers – they certainly are working, so please continue to lift Mark up each day. Love to you all!

Tuesday, November 16, 2010

All about emotions (part 1)

I think my New Year’s resolution this year will be to keep this blog updated! I am so sorry that I’ve been terrible about it. I will be having more time now, so it should be much easier for me to keep my promise of trying to write each day.

I know I owe you all a lot of information. I think I may try to look back and tell you all about things that have happened in the past, but for now I just want to write about the present…
I can’t really say what Mark’s true feelings are, but he seems to be handling everything well right now. He has been my rock lately. The problem is that I want to be HIS rock. I want him to get to lean on me and depend on me to help him, but he has been the one to comfort me lately.
This blog is supposed to be about honest feelings. I know I have mentioned in the past that I worry sometimes about telling people what I really feel, because I was afraid of people thinking that my faith is wavering. I can tell you right now that I trust God 100%! Now, for the really honest, raw details. I have started seeing a counselor. She is an amazing Christian lady who actually specializes in working with family members of people with brain injuries. Be it cancer or some sort of trauma. This counselor was recommended to me by a person that I admire and love very much who has been going through the pain of having a husband with brain cancer for many years now. I know that has been difficult for her, but in some ways I am really jealous that she has had that time with her husband because I know we should not expect that much time with the type of cancer that Mark has. Anyway, this counselor has taught me that I do not need to fear for a second that my faith is wavering just because I am thinking about reality and trying to prepare for that. I know that God can see the big picture, when I can only see a tiny bit of it here. I know, without a single doubt, that He will allow to happen whatever is absolutely best. If God gives us the miracle we pray so hard for (complete healing) or the miracle of more time, we know that is His will. If he doesn’t add a single past the prognosis, we know that is His will. I know that I am going to be okay. God will provide what I need when I need it, BUT, that does not mean that I can’t hurt or have other emotions other than joy and peace. I am facing reality now. I am starting to grieve. Part of that process is facing the future. It helps me to know that things will be prepared. So, when I talk about that I want to get certified to be a teacher if I have to work full time in the future, it does NOT mean that I have given up on God. In fact, I am just allowing Him to help me and that is trusting Him. I will never stop praying for God to completely heal Mark or for Him to give us lots and lots of time together. I want to make sure everybody knows that before I write the next thing here. An emotion I have been encountering a lot lately, is anger. I am NOT angry at God, but I can’t help but ask Him a lot “why Mark?” I know that one day I will see the answer, but it doesn’t help me feel better now. There are so many people that try so hard to say the “right” words, but it actually stirs up anger inside of me. Remember that I am just being brutally honest here – I get really upset when people tell me to “stay positive”, “chin up”, “it will be okay”, “have faith”, or tell me they “know 100% that Mark is healed and that he will not die from this cancer” Again, I know that these people mean only the very best. They are trying so hard to be helpful and it is not their fault that I am having a hard time dealing with these emotions right now, so I am not in the least bit upset with any person that says these things. In fact, I appreciate so much how much they care and want to help me. God has blessed us with amazing friends and family and I appreciate each and every one of them along with every gesture of kindness.
Another thing I am really having a hard time with is seeing people whose marriages are falling apart. I have many friends who are now divorced or who are going through divorce. I have always looked forward to growing old with Mark. I have talked, since we got married 12 years ago, about looking forward to our 50th wedding anniversary. I KNOW that we could be the ones to make it. So WHY does it have to be Mark that is inflicted with a terminal cancer? He is an AMAZING man. Many of you have the privilege of knowing him, but for those of you that don’t, I hope you do get to experience his friendship. He is so sweet, kind, and thoughtful. He is a wonderful daddy and is admired by our boys. He is a godly man who spends time in God’s word daily. He is strong and he is THANKFUL that God chose him to reach people through his cancer. He said that if even 1 person comes to Christ because of what he is going through now, that it is all worth it and he would do it again in a heartbeat. Well, I know that he has touched more than one life! He is just amazing. He is the best husband I could ever ask for, the best daddy the boys could ever have, and the best friend people could ever need.
Unfortunately my time is up for now. I have to go to get the boys ready for school and get myself ready for CLC. Because of everything going on right now, I had to make the very difficult decision to quit working at CLC for now. This will be my last week. I have already cried plenty of tears over leaving my “family” there, but mostly for my “babies” in my classroom. I cannot tell you how attached I am to them. I love each and every one of them and feel a special bond with them. I can tell you that this Tuesday and Thursday will be filled with lots of hugs and snuggles with them!
I promise to make some time in the next couple of days to write some more. Thank you for taking the time to read this blog. Please continue to pray for Mark and my family. God bless you!!

Thursday, October 28, 2010

MRI Update

I sent this mail to people at work and thought I'd post here and help Becky out some. :)

I’ve been asked multiple times for an update on what’s going on with me. I was waiting until my next MRI to send out email. I went in for the MRI on Monday and met with the oncologist yesterday.

Overall, it was a good visit. They’re going to start weaning me off the anti-seizure medicine slowly (~1 pill every office visit which is every 4 weeks) since I haven’t had any episodes since before my surgery in March (>6 months). I’m taking 8 per day now just for anti-seizure. They can’t take me completely off them, so I figure we’ll try to at least get me off the Keppra and then I’d just take 2 per day. That’s what I’m shooting for anyway :).

I get an MRI every 8 weeks. There are 2 main things that they look for in the MRI – the area around where they took out the tumor (it’s just a cavity and won’t ever fill in) and any additional activity in my brain down to my shoulders (including my upper spine). The area around the tumor is healing nicely and the dye they put in gives an accurate picture of what’s going on around the tumor location. 3 MRI’s ago it was lit up pretty bright and they said that was probably scar tissue, blood, etc. Last MRI it was shrinking some, so it was healing. This MRI is was almost completely gone. This was an indication to the doctor that the chemo is working, which is good.

Prior to this MRI they gave me a CD so the doctor could look at images on the CD. My doctor requested last time that for my next MRI, I get the actual films. So I asked for those this time and that’s what they looked at. The second part of the MRI that they look at shows any lit up areas outside the tumor area. Glioblastoma can frequently come back in other locations – even your spine. There was one location that the radiologist thought “changed”. Now, they’re kind of comparing apples to oranges because the films show more detail than the CD images. This lit up area was on my last MRI as well, but looks like it has shifted a tad bit. The oncologist was showing me the film and a printout she had from my last MRI. She talked it over with another doctor in the office and they think that it’s still the radiation in my head (which is going to be there for years) and that the radiation is moving. I asked her 3 times if I should be concerned and she kept saying “no”, but that this is something we want to watch. Now I’m going to be nervous for the next 8 weeks :).

My next MRI is scheduled for 8 weeks again. I guess if she was concerned she would have scheduled it sooner because the tumor grows so fast. This lit up area is in the left frontal lobe again, so if I notice any mobility issues on my right side or seizures to let them know. She said the next MRI is going to be a perfusion MRI, in which they can watch the blood moving throughout my brain and since the tumors require more blood, it’s an indication that something is growing there. If not, then it’s the radiation.

I’m still on double chemo 7 days on and 7 days off. I have my good days and have my rough days. But I’m thankful for each day the Lord gives me. I still ask for prayers because I couldn’t do this without them. We’re still praying for a miracle!

Thanks,
Mark

Wednesday, August 11, 2010

New treatment plan

I’m so thankful to have this blog to share information with everybody, but I’m so bad about keeping it updated! I have good intentions, but as you can tell, I’ve had a problem following through on those intentions.  Anyway, I do want to give an update now since Mark is on a new treatment plan. This is how it all started…
We were so excited that Mark was picked to take all three medications in the clinical trial as well as the chemo. He was taking 300mg of the chemo for 7 days on and 7 days off . He was also taking Thalidomide, Accutane, and Celebrex. Mark was having a lot of trouble with the medication. He could not function. He was falling asleep in his chair while he was working at the computer. He felt miserable all day every day. He had a very hard time waking up in the mornings and just could not enjoy anything. We figured it was the Thalidomide making him feel like that, so we got permission for him to stop taking it for a couple of weeks and see if that made a difference. It did. He felt so much better after that got out of his system. The Accutane was making his skin very sensitive. He couldn’t be in the sun and his face was peeling very badly. I had to do a lot of facial treatments on him and lather his face with a very thick lotion. Then his arms started peeling too. We started seeing commercials for lawsuits being filed against Accutane because of all of the stomach problems it was causing in people who took it. Those people just took a regular dose. Mark was taking more than twice the “normal” amount. Because the thalidomide can cause blood clots, he had to take Coumadin also. That made him feel really cold and he bled easily and profusely. That caused a little trouble when he had to go get his blood checked every 2 weeks. A couple of weeks ago Mark got really sick to his stomach. We didn’t know for sure what was causing that because both the Accutane and Celebrex can cause stomach issues as a side effect. We were thinking it was probably the Accutane since it is known to cause severe stomach issues. We didn’t think it was the chemo since he took it every single day while we were in Houston for 6 weeks and he didn’t have any trouble with it then. We called to talk to the doctors in Houston about it and they said that he can’t continue on the trial if he doesn’t take all of the medications he was chosen to take. So, he made the decision to stop the trial. A couple of days after he quit taking the medications he felt much better. Although he quit the trial, he still needed to continue taking Chemo. Mark said that he really wanted to continue taking the same amount as he was taking on the trial. The doctors in Houston said that they would just give him the standard of care which is half of the dosage of chemo that Mark had been taking and it is only 5 days of the month instead of 14 days per month (7 days on and 7 days off). We decided that he would get equal care if he continued in Houston or if he switched to using his local neuro -oncologist as his primary doctor, so we decided to use the doctor here in Dallas. When she talked to us, she told us that she wanted to keep him on the same dose that he was on before! That is exactly what Mark wanted to do and we had no idea it would even be possible to do that. We had not told her what Mark’s desire was as far as the chemo, so we know this was just another blessing from God. Mark will be able to do his MRIs here in Frisco every 8 weeks, and he gets his bloodwork done every week at a place that is also close to home. So, we love MD Anderson and we had a great experience doing his initial treatment there, but things will be so much easier for us now that we won’t have to go to Houston for 2 days every 8 weeks. We are still so thankful for all of the blessings the Lord has provided us during this whole battle with Mark’s brain cancer. Mark and I were talking the other day about how these types of devastations tend to make couples much closer or tear them apart. We are so thankful for the strength of our relationship with each other and with God. I have never felt closer to Mark than I feel now. I am so thankful for him and so very proud of him. We have had time to be on our knees together praying for a miracle and for guidance to follow God’s will. Mark seems to be very much at peace about the future if it is God’s desire to take him Home. Of course, we will continue to pray for total healing here on earth too. Mark said that the David Barnes song God Gave Me You is special to him during this time and he sent an email via his website to thank him for the song and tell him how much it means to him for him to be able to share it with me. (I’m telling you, he is such a sweet husband!). That night, Mark got an email back from Mr. Barnes telling him that he appreciates Mark sharing his story with him and that he prays for Mark to be healed. Mark also sent a short version of his ordeal to another group that sings a song that means a lot to him right now. They responded and asked for permission to share it on their website. I think that is really cool too!  Well, I think that is enough for this blog for now. Thank you all for reading this and for your continued to prayers!

Saturday, July 3, 2010

Happy (almost) 4th of July!

We just got home from a fun night at some friends house. They had a cookout with a bunch of people and all the kids played and the adults visited. I made a new friend too. She and I had a nice talk and found things we have in common and found out that one of her kids and one of mine are in the same grade at the same school! She is really sweet and I got her information so that we can have some playdates in the near future. We were able to see the big Frisco fireworks show from their backyard. It was good to see and the kids had a BLAST running around with glowsticks and seeing the fireworks going off. It was just a really good night.

We had another blessing yesterday when we got a call from the research nurse at MD Anderson telling us that everything was approved for Mark to start the clinical trial. Since it is a randomized study, they put his name in a computer and then it tells them which combination of medications he will take. He was picked to take all 4! My feeling is that it gives him the absolute best chance to eradicate that tumor! :) We do not have all of the details yet of how much of each medication or how often he will take them, but we are expecting to get that and for him to start on it next week. We do know that he will be taking the increased dose of Temodar (Chemo) for 7 days on and 7 days off for a year. In addition to that, he will take Accutane, Celebrex, and Thalidomide. We are pretty excited for him to start this trial.

In other news, Colin has been asking a lot of questions about God. He had a real struggle for a while after Mark was diagnosed. While we had to be away from home for 6 weeks, he really had a hard time dealing with his emotions and started questioning God. Since we have been back, he has gotten much better about that. He started praying again with no hesitation and started talking about how much he loves God. He tells us a lot that he loves us more than anything, except God. He says, “I love God more than you guys” :) It’s very sweet. Since he started asking more questions about having a relationship with Jesus and about baptism, we told him he could come to “big church” with us. So, we are planning on bringing him in with us to the service tomorrow. I am excited about that too. We are so very thankful for the many blessings Christ has provided us through all of this and I cannot imagine how difficult all of this would be without our relationship with Him.

Thank you for reading and I hope you all have a wonderful July 4th holiday!

Tuesday, June 29, 2010

MDA follow up

We are leaving Houston now after a LONG day of waiting! I am attempting to do this update on my iPhone while we are on the road. (Don't worry, I'm not the one driving). Mark had his blood drawn and had an MRI last night. Before his MRI, we got to see a friend that we made last time we were here. She had surgery the other day, so she was here for that from Ohio. It was good to get to see her again. Mark's MRI was scheduled for 9 last night, so we were at the hospital pretty late. While Mark was getting scanned, his dad and I sat in the waiting area. I try so hard to "keep the faith", but sometimes it's just really difficult. I had so many "what ifs" running through my mind and I was feeling scared and lonely. I couldn't keep the tears from falling. Since it was late, they were closing up the front waiting area and moved us to the back. I sat next to a man who told me that he had visited with Mark back there before his scan. This man's wife also has Glioblastoma. It was good to talk to somebody in the exact same situation as me at the exact same time as me. God always provides what we need- that's a huge blessing! This morning we met another friend (I posted about her before- she and her husband live in Frisco and she is at MDA for radiation treatment now) and her sweet mom for breakfast. We had a good visit with more tears and laughter mixed in. We talked about how we are so grateful for God's love and grace that even if our miracle on earth is not provided, there is a much better place awaiting Mark. I have been really struggling with the reality of this cancer lately. I want to be prepared in case my desire for Mark to live is not God's will, but I want to remain faithful and full of hope and peace. After breakfast we went to the hospital to wait for Mark's appointment time. There was some problem with the computer system, which caused Mark's doctor to run a couple of hours behind. It was a lot of waiting we did today. We finally were called back and we met with several different doctors. We were not able to see Mark's MRI because of the computer problem, but the report said there was no change from before treatment. That is good news! A HUGE blessing! We talked about his treatment going forward. He is going to do a clinical trial that will last for a year. Mark will take an increased dose of Temodar (chemo) for 7 days on and 7 days off for a year. Then, he may also have up to 3 additional medications to take as part of this trial. I will do another post soon to give all of the details about those meds and how they are supposed to work. The doctor gave some encouraging stasticics regarding MDA research and Glioblastoma. He said that they have seen 2 times the amount of people with GBM, living 2 years, and tenfold the amount living 10 years!! That is the most encouraging thing we have heard so far. Mark doesn't normally like to hear about numbers, but he loves hearing news that good. Since he doesn't want to know the normal prognosis, I can't post about it here, but you can look it up online and see just how amazing that 10 year stat is! So, we are ready to get going on his treatment again and see what other amazing blessings God brings to us. Thank you all for your continued prayers and support!

Wednesday, June 16, 2010

Another Hospital Stay

I’m sorry it has been such a long time since I posted. I’ll try to keep this one relatively short for trying to fit so many days worth of information in it. :) Anyway, we have been back from Houston for a couple of weeks now. After we were back home for about a week, Mark got a sore throat and felt that he should go to the doctor and get it checked. I took him to the freestanding ER/Urgent Care place near our house. They couldn’t do anything for his sore throat, but they wanted to check his blood since he had just finished Chemo about a week before then. They said that the machine got an error message, so they took his blood again. The machine still couldn’t read the results because his white blood cell count was so low. He also had a little bit of a fever, so they gave him a bag of antibiotics and sent him to the hospital. As soon as we got to the ER, the triage nurse called Mark back and put a mask on him for his protection. Mark’s mom was with us (I couldn’t drive that far to the hospital because I had just had my back surgery) and they made her and me wear a mask too. We were in the little room in the ER for several hours. They gave Mark more IV antibiotics and some Tylenol for his fever as they waited for a room to be prepared for him on the oncology floor. They took his blood again and found that his white blood cell count was 0. They weren’t sure exactly what kind of infection he had that was causing his sore throat and fever, but they were very cautious because it could have killed him. It seems so weird that he was so close to death just from a little cold or something! He had to stay in the hospital all week. (Monday through Saturday) They continued to give him IV antibiotics, but his fever was not coming down. Then, he got several fever blisters on his mouth, so they started giving him an antiviral medication 5 times a day. That made his fever finally come down. They still gave him antibiotics in an IV several times a day in addition to the antiviral pill 5 times a day and a shot in his stomach every day to get his bone marrow to start producing white blood cells. It took a couple of days for that shot to start helping. His counts went up high enough and his fever was gone for long enough that they let him go home on Saturday. He still has to be really careful though. We all wash hands like crazy around here and use a ton of hand sanitizer. I clean everything with a super strong cleaner that kills all kinds of germs and Mark wears a face mask when he has to be around any other kids or large crowds of people. Mark did so well with his treatment, that we just did not expect for him to have any problems when we got back home. We were supposed to have an appointment with his oncologist in Houston on the Friday that we came back home, but he got sick and had to cancel Mark’s appointment. So, we didn’t get to find out any information about what to expect the next few weeks. After talking to the nurses at the hospital, we found out that it is pretty common for people to have extremely low white blood cell counts 7-10 days after finishing Chemo. The name of that condition is called Neutropenia. The doctor at the hospital told Mark that since he will be continuing Chemo for a whole year, we should expect that he will become Neutropenic several times and we should be prepared for him to be hospitalized at least a few times in the next year. We read an email from the American Brain Tumor Association not too long ago that said that an increased dose of Temador (the oral chemo that Mark takes) for longer periods of time, have been shown to be effective against Glioblastoma. That was encouraging to us, and Mark is planning on joining a clinical trial that includes an extra dose of Temador (so he will be taking double the usual amount for a year), which we feel hopeful about that helping to fight his tumor(s). But, since his levels dropped so low with the one dose, we are a little worried about how his body may react with a double dose. We go back to MDA at the end of this month for Mark to get another MRI, get more bloodwork, and meet with the oncologist there, so I guess that is something we can discuss with him while we are there. Well, I guess I will go ahead and end this post now since it is already so long. I will try to post again really soon to tell you about all of the people that we have been blessed by being able to visit with and talk about some of the emotional issues we have been dealing with lately also. Thank you for your continued prayers!

Monday, May 24, 2010

An AMAZING Day!

Today was an amazing day! We were able to be used by God to help to bless somebody else today and it was wonderful! It feels so good to know that God wanted to use us to give a little encouragement to a family that needed it. We have been blessed beyond belief these last couple of months, and we know that God can use any situation for good. Here is how it happened…

We got an email this morning about a couple that attend our church who are in Houston right now for the wife to undergo brain surgery to remove a tumor in her left frontal lobe. This is the exact place that Mark had his tumor. The person in the email asked us to pray for this family, but Mark and I both immediately felt the Holy Spirit telling us that we needed to go see this family and talk to them to give them some encouragement and let them know that we are praying for them. Mark had radiation treatment this morning and then had to go have his blood taken for labwork. When that was finished, we found out where the surgery waiting room was, asked where we could find the family, and approached them. Looking at this group of people waiting anxiously while their wife/daughter/sister/daughter-in-law/friend was having brain surgery brought back so many memories of waiting while Mark was in surgery a couple of months ago. We introduced ourselves and told them our story. Mark showed them his scar and talked to them about how he felt after his surgery. The doctors have already determined that her tumor is malignant and they are planning for her to do chemo and radiation, so Mark also told them about his experience with treatment so far. We told them that we will continue to pray for them and asked if we could go see her when she is recovered enough. We were able to answer a few questions for them based on our experience, and traded information. Mark and I are looking forward to keeping in contact with this sweet family and getting to know them even better. They keep a blog also, and Mark checked it this afternoon and found that they posted about our visit and how much it meant to them. They were amazed that God sent us at just the time they really needed it. I know they felt blessed, but we were so very blessed by meeting with them to.

We still appreciate all of the prayers that everybody has been sending up for us and ask that you please continue to pray for Mark’s healing and that God will continue to use us for His Glory. Please pray also for this family that we met today that God will heal this young lady, give her family peace, and give them many blessings too. Thank you God for your wonderful ways!

Wednesday, May 19, 2010

Good Day

Today was a pretty good day. We dealt with a lot of emotions, but overall it was just a pleasant day. Mark and I had to discuss all of the things that need to be taken care of in case God does not provide our miracle and that is so very hard for us. There were a lot of tears from both of us. I have this crazy feeling (I know that it’s not true, but I can’t help but think it) that God will think I don’t trust Him to provide a miracle to save Mark if we are talking about the future as if the miracle is not delivered. Once we finished that discussion, I prayed, prayed, and prayed and started feeling some peace again. We went to dinner tonight with a lady that we met here. She is staying in the same apartments as us and has radiation at the same time as Mark, so we ride the shuttle together a lot. We wanted a chance to talk to her some more, so we invited her to supper. We had a GREAT time with her. She is so nice and we really enjoy being with her. I met a lady today that Mark met the week I was not here and her little 4 year old son rode in the shuttle with us today. I got to sit next to him. His name is Ray-Ray, and he is so cute! I loved talking to him during the ride. He just made me smile. I also edited a video today of the boys spinning in a chair here in our apartment when they were here last weekend. I laughed over and over today watching it. Talk about lifting my spirits!

I am also reading a book that is really impacting me. It is called “When God and Cancer Meet” It is so encouraging and I feel like God is using it to make me feel better. I read parts of it to Mark and it has been reassuring to him also. So that’s it for now. I just wanted to post about all of those blessings from today and say that we appreciate all of the prayers and ask that you please continue to pray. Thank you!

Monday, May 17, 2010

2 weeks left in Houston!

Mark is almost done with treatment here! Just 2 more weeks of radiation. Then we get to go home!! Mark will have 4 weeks off from chemo, and then he will start it again and continue taking it for a year and 6 weeks. He will also start on one of the clinical trials after we get back home. We praise God for how well Mark is doing with his treatment. His scar from surgery is healing up nicely. Radiation is causing him to get a little pink (like a sunburn), and to lose his hair in the areas where the beams go through his head. (I’ve got a picture, but Mark won’t let me post it) We have some good laughs about his hair. He is so silly. He will walk around with his head tilted and say he’s trying to make his head feel even since his hair is so lopsided now. :)

He has been getting really tired lately. That is caused from the radiation also. He has to rest a lot and needs to take naps pretty much every day. For about a week, he lost his sense of taste. Unless it was something really spicy, he just couldn’t taste any flavor at all. That is getting better now. He has had NO sickness from the chemo. He takes an anti-nausea medication about 30 minutes before he takes his chemo and then he goes straight to bed after taking the chemo pills. This has worked great for him since he hasn’t even felt a little sick to his stomach. That’s the thing that most people are amazed about.

On Mondays, Mark gets his blood drawn. We don’t know what all of the numbers mean when we look at the results on his online page, but we know they are okay since they haven’t called him to change anything with his treatment. He sees the Radiology doctor every Tuesday. This appointment usually lasts about 3 minutes. They just look at the sheet that Mark fills out and see that he answers “no” to just about every symptom, and the doctor looks at him, asks if he has any questions, and then we are on our way. Very simple!

I am doing okay with the medicine I am on now for my sciatic pain. It sometimes makes me a little sleepy, but at least it’s quiet and easy for me to rest when I need to while Mark is resting. I still hurt, but for the most part, it’s under control. My surgery will be on June 3rd. I am ready to get it done so that I can start healing and this pain will go away!

We have had great visits with Mark’s family and our boys on the weekends. My mom will be bringing them this coming weekend and then we will be home the weekend after that! Mark finishes his treatment on the 28th and we will move back home on the 29th. We are really looking forward to that! We really miss our boys. We have so much fun with them when they come visit. I think this past weekend was the best. We didn’t get to do what we had planned, but we had the BEST time just hanging out together. I laughed so hard and just had a wonderful time being with the little boys. We also got to go to The Rain Forrest CafĂ©, and the boys really liked that.


We have continued to be blessed with Gift cards and greeting cards. They mean so much to us! Mark has heard from people saying that he has influenced them in a positive way and made them turn back to the Lord. Mark said that if even 1 person comes to Christ because of his cancer, then it is all worth it to him, no matter the outcome. Of course, we are still praying for a miracle and I keep saying that right now I don’t have any reason to believe that God won’t provide that miracle, so I will keep praying and praising. We really appreciate all of the prayers that people are sending up for us. We can tell you that the prayers really help!

Saturday, May 1, 2010

End of 2nd week!



Mark completed week 2 of treatment! Now just 4 weeks to go! It is Saturday and we are waiting for Mark’s parents and our boys to get here. We are very anxious to see all of them. Colin does not have school on Monday, so they will get to stay an extra day this time. I will be driving back to Frisco with Mark’s mom and the boys and Mark’s dad will stay here with Mark. Then, I will come back with Mark’s mom and the boys the next weekend, and Mark’s dad will go back home and I will stay with Mark for the remaining 3 weeks. It has been a HUGE blessing to have family close by to help out. We know it was all in God’s plan for us to move back to Texas and for Mark’s parents to move closer to us. We had no idea any of this would be happening with Mark, but we don’t know how we could have done this without Mark’s parents and without my Mom to help us by taking care of the boys while we are here for Mark’s treatment.

We have met some more really nice people here in Houston. The good thing about doing the treatment here is that there is an instant kinship with each person in the waiting room. Most people do their treatments around the same time each day, so we get to know each other as we visit a little 5 days a week. We met a sweet woman and a nice man that do radiation the same time as Mark that each have Glioblastoma like Mark. We ride the shuttle each day with a very nice lady who has Sarcoma and has been battling it for a couple of years. It is just so nice to know that there are people we can talk to that completely understand what we are experiencing. MD Anderson is a wonderful place and I am so thankful Mark wanted to get treated here.

Mark really likes the technicians that do his radiation treatment. They are so nice and make him feel comfortable. They let me go back to see the room and watch Mark get set up for his treatment. They showed me how the mask works to “bolt him down” to the table, how they use lasers to line him up, how the table moves, and the radiation machine rotates to radiate different locations. It was very interesting and they let me take some pictures too.


One last thing for this post… this month is Brain Tumor Awareness month, and you can see more information at www.abta.org

Thursday, April 29, 2010

Still going good!

Hello! There is not much to blog about today, but I wanted to keep everybody updated. Mark is still doing great with Chemo and radiation. He has not had any side effects from the chemo still and he is getting tired from the radiation, but we can continue to deal with that. Mark really likes his radiation technicians, and they are going to let me go back tomorrow to show me the machine and show me Mark’s mask he has to wear and explain how it works. That will be interesting! We have been receiving many cards and packages and we want to say thank you so much to everybody for those. You will never know how much that means to us. What a blessing!

Monday, April 26, 2010

Encouragement from God

I posted this on facebook tonight, and I just wanted to be sure to include it in the blog as well...

As we are dealing with Mark's brain cancer and now having to be away from our home and our boys during his treatment, I find it easy to get discouraged. I try to keep my focus on Christ, and He helps me stay focused on Him. I have been reminded of His love for me through all the sweet notes of encouragement from family and friends, all the prayers spoken for our family, all of the blessings received via meals, phone calls, etc. A major way that God has spoken to me is through songs. It seems like everytime I really needed an answer from Him, I would get in the car and a song would be playing that comforted me, answered a question, or made my heart swell with joy. I just wanted to copy the lyrics to a couple of those special songs so that I can look at them anytime I need to and also for others who might benefit from these words. (I am thinking especially of my sweet friend, Kami, right now as her husband is also fighting for his life)

"Healing Hand Of God"

I have seen the many faces,
I fear in the pain.
I have watched the tears fall plenty,
From heart ache and strength.
So if life's journey,
Has you weary and afraid.
There's rest in the shadow of his wings.
I have walked through the valleys,
The mountains and plains.
I have held the hand of freedom,
It washes all my stains.
If you feel the weight of many trials,
And burdens from this world.
There's freedom in the shelter of the Lord.

I have seen,
The healing hand of God,
Reaching out and mending broken hearts.
Taste and see the fullness of His peace,
And hold on to what's being held out.
The healing hand of God.


I have touched the scars upon His hands,
To see if they were real.
He has walked the road before me,
He knows just how I feel.
When you feel there is not anyone,
Who understands your pain,
Just remember all of Jesus' suffering
.


Cast all your cares on Him,
For He cares for you.
He's near to the broken and confused.
By His stripes,
Our spirit is renewed.
So enter in the joy prepared for you.


"Mountain Of God"

Thought that I was all alone
Broken and afraid
But You were there with me
Yes, You were there with me

And I didn't even know
That I had lost my way
But You were there with me
Yes, You were there with me

'Til You opened up my eyes
I never knew
That I couldn't ever make it
Without You

Even though the journey's long
And I know the road is hard
Well, the One who's gone before me
He will help me carry on
After all that I've been through
Now I realize the truth
That I must go through the valley
To stand upon the mountain of God


As I travel on the road
That You have lead me down
You are here with me
Yes, You are here with me
I have need for nothing more
Oh, now that I have found
That You are here with me
Yes, You are here with me

I confess from time to time
I lose my way
But You are always there
To bring me back again

Sometimes I think of where it is I've come from
And the things I've left behind
But of all I've had, what I possessed
Nothing can quite compare
With what's in front of me
With what's in front of me

Doing Good!

There is not too much to post about this time. Things are going really well here in Houston. We have gotten into our routine here. I told Mark is feels like we are newlyweds again – living in an apartment and no kids.  We have been so blessed with people brining us meals that I’m really missing that now that we are here in Houston.  I’ve been making good use of our full kitchen in our furnished apartment. We did receive several gift cards for eating out, so we just rotate between using those and going to the grocery store and buying food for me to cook here. It’s working out really good.
Mark is still doing great with his treatments. He gets pretty tired and needs to rest a lot, but other than that, he’s not having any side effects. He still has his hair and he has not been sick to his stomach or anything. That’s a wonderful blessing! He had blood work done this morning, but we don’t know the results of that yet. I’m not sure that we will be told unless there is a problem with it, and then they would need to add or change some things.
We got to see our boys over the weekend. That was great! We took them to the Children’s Museum here. We had a good time there and just loved spending time with them. We picked up supper and rented a movie that evening. The next morning we had breakfast with them before they headed back to Frisco with Mark’s mom and his brother, John.
Mark’s parents said things went pretty good during the week that they were keeping them at our house. My mom is taking care of them this week. Carter does cry because he misses us, but I think it will get better as he gets used to us not being there. Colin is struggling with his faith right now. It’s hard for adults to understand why such bad things can happen to such a wonderful man, so just imagine how a 6 year old gets frustrated with not understanding it. We will just continue to pray for Colin during this time while we are praying for a miracle for his daddy.
I believe that is all that I needed to post about this time. Thank you all so much for the continued prayers!

Thursday, April 22, 2010

Celebration with a Cancer Family

We met a really nice family in the radiation waiting room this week. Their adult son has cancer and today was his last day of radiation. At MD Anderson, when you finish treatment, you get to ring a bell and people clap and cheer for you. We went early this morning so that we could watch Brian ring the bell. It was so neat to get to be with this special family to help them celebrate this accomplishment. Brian will be having a major surgery in the middle of June that is expected to be 12 hours long with 5 surgeons. Please pray for this family as you are praying for Mark also.

My last post was more of an update than anything, so I just wanted to do another quick post to be sure to express our recent blessings. We found out that our housing expenses will not be covered, but we are being blessed by friends doing a fund raiser for us. www.hurtingheartsministries.com It is so amazing to me that people are willing to help us out in this way, and they will never know how much it is appreciated! Also, Mark’s treatment is very expensive. We got the bill from just the hospital part of his surgery and it was $56,000! His chemo pills for 1 month cost over $12,000! So, I cannot express our thankfulness and how blessed we feel for our WONDERFUL medical insurance! God has certainly looked out for us in the area. Although we have to pay for it, the place we are renting is excellent for us. We have a full size kitchen so we have been able to prepare most meals here which cuts down on costs of food tremendously. The lady in charge of these apartments, Wendy, is so very nice. She drives us to the hospital each day and picks us up when we are finished with Mark’s treatment. That way we don’t have to pay for parking and it is so convenient! We are close to places where we can rent movies so we have some restful entertainment each day. We are very blessed with how well Mark is handling treatment! He is a little tired from Radiation treatments and his head hurts a little bit, but other than that he feels fine. He has not been sick to his stomach at all with the Chemo! We are so thankful for that. We see a lot of cancer patients here who have things really tough and it makes us really appreciate how well Mark is doing, thanks to God’s healing hand. We are also blessed with our amazing friends and family who do anything for us and are willing to take care of things for us so that we have nothing to worry about while we are here. So, those are a few of our recent blessings. Thank you again for all of your prayers and words of encouragement!

Monday, April 19, 2010

First Day Of Radiation

I’m sorry it’s been a few days since my last update. We’ve had quite a whirlwind last few days! We drove to Houston last Monday night for Mark’s appointment on Tuesday morning at MD Anderson. We spent HOURS at the hospital meeting with many different doctors. Mark decided that he for sure wanted to do treatment with them, so we got things set for that. He did his simulation with the radiation team so that he would be all ready to start today. They wanted Mark to keep his appointments he had that Wednesday, so we drove home last Tuesday night after he finished everything at the hospital. We went to his appointment with his local Neuro-Oncologist Wednesday morning. We really liked her. She showed us his post-op MRI and that there were a couple of places “lit up” on it. She said they could possibly be tumors, so she felt like it would be important for Mark to get another MRI before treatment started. She knows Mark’s radiation Dr. at MD Anderson really well, so she called her. We got a call about an hour later from a nurse at MDA telling Mark that he needed to go there right away for an MRI. His dad offered to drive him there because I could not miss the doctor’s appointment I had scheduled the next day with my Neurosurgeon. So, I called to cancel the appointment he had that afternoon with the neurologist and he headed back to Houston for the 2nd time in 2 days. He had his MRI that night and then came back the next morning. We still haven’t gotten the results from that scan. He has an appointment each Tuesday, so we will hopefully find out this morning about that when he meets with her. We are now in Houston and getting settled into our temporary apartment. It’s pretty nice and very close to the hospital and several food places. There is a shuttle from here that we can take to and from the hospital. That will help us to avoid any parking fees.
In other news, I did have my appointment with my neurosurgeon last week. He says I NEED to have surgery on my back right away. He asked me about having surgery here in Houston, but I just don’t feel like that would be in Mark’s best interest right now. The doctor is just worried about permanent damage. He said the longer I wait for surgery, the more chance there is of scarring to happen and then I could continue to have this pain even after they do the surgery. I certainly don’t want that, but I just don’t feel like I have a choice right now. I promised him that I would make an appointment as soon as I get back from Houston and then get the surgery scheduled. So, I am just staying medicated now to deal with the pain until I get back home and can have the surgery.
Mark’s first day of radiation went well. He said it was kind of strange, but he did fine. He has tolerated his Chemo really well so far. He has had no sickness, so I pray that continues for his whole treatment. We are going to rent a DVD or two today after his treatment for us to watch tonight. It’s so strange to have so much quiet time. We are really missing the boys already. I am excited for this weekend to get here so we can see them. We are planning on going to the aquarium here on Saturday. I know the boys will just love that. Well, I guess that I will end this for now. It’s time for us to start getting ready to leave for today’s treatment. Thank you for continuing to pray for us!

Saturday, April 10, 2010

MD Anderson

We got an appointment for Mark at MD Anderson this coming Tuesday! We will be leaving on Monday so that we can be there for an 8:30 appointment Tuesday morning. Mark is so excited! This is the most hopeful I have seen him since his diagnosis, so it is very exciting for me as well. Mark is supposed to be getting his stitches out on Tuesday, so I will have to change that appointment. We are keeping his appointments here on Wednesday with the neuro-oncologist and his neurologist, so we will have to come back Tuesday evening. Then we will make our decision about what to do once we have all of the information we need. Mark has really decided that if MDA will accept him, he wants to do his treatment there instead of here. There would be a lot of benefits to doing that even if it was the same treatment plan as here. Although it would be really hard for us to be away from the boys for so long, it would probably be safer for Mark to be away from them. For example, the boys both have a virus right now, and during Chemo that would be dangerous for Mark. Mark's parents have offered to take care of the boys while we are gone if we end up going to Houston for an extended amount of time. They said they would bring the boys to us on the weekends, which is just so incredibly nice! I can't wait until Tuesday to find out for sure what we will be doing so that we can get all of the plans in order for that trip. We have read many encouraging things about what MDA offers for cancer paitents. We want to try the best of everything and have no regrets even if it means we have to make some financial and emotional sacrifices.

I talked to my doctor about my back and he wants me to have the surgery right away, but if we go to Houston, that will just not be at all possible for right now. I really don't want to have the surgery until Mark is recovered from his treatment anyway, so I have to see if I can get him to work with me on pain management until then.

I had my last day at CLC so that I can be with Mark for all of his treatment. I am really going to miss my kids there, but I know this is what I need to do. I am praying for him to recover quickly so that I can return when it starts back in the Fall.

We have not told the boys yet about the cancer. I know that is something that they will not be able to really comprehend, so I don't know how/what to tell them. I want to see if I can find some books or something with ideas on what to say and how to explain it to them.

Mark has started to open up some about his feelings. He kept it all to himself for a long time and he just finally told me some of his fears and the things he has been praying about and thinking about. I think I might look for some specialized counceling for us to go to as well.

I have had my moments of crying since we got the pathology news, but Thursday was the most emotional day for me yet. I'm not sure why, but I could not stop crying that day. I cried hard for several hours straight. I didn't want the boys to worry, so I spent some time just sitting on the front porch letting the tears flow. I finally got myself together and I've been doing much better since then. Now I'm in a determined stage I guess. I just keep telling Mark how we are going to fight our hardest against this cancer and that we are going to pray continually for a miracle.

It's been difficult, but the blessings have continued. We are still being covered in love and prayers. Meals are still coming on a regular basis so that we don't have to worry about cooking. My mom researched and brought us the information about MD Anderson that led us to call them and get an appointment. We are still getting cards and calls from people to let us know that they are praying for us. People are offereing to help in any way they can, including to help take care of the boys, which is what we will be needing most during Mark's treatment. A fundraiser has been set up for us, which is just amazing! We have not had to worry about finances recently, but we are not totally certain about all of the financial matters since Mark will be going on short term disability soon, so the fundraiser is an amazing blessing! Mark is still doing better and better each day. He can walk really well now and doesn't need any more assistance getting around. He still has no pain, and he has had no seizures since the surgery. Mark's parents have done so much for us, especially helping us with the boys and with staying with Mark when I need to do things.

Although this has been a very hard time for our family, we have not lost faith. We know that God is in control and we are excited to see exactly what good He is going to bring from our struggle!

Tuesday, April 6, 2010

Pathology Results

I will update later to add more details, but for now, I just wanted to let everybody know that we got a call from the doctor yesterday about the pathology results and it is brain cancer. It is glioblastoma and Mark will be starting Chemo and Radiation Therapy soon. He has an appointment with a neuro-oncologist next week to find out more information and get started with the treatments.

Friday, April 2, 2010

Home again!

It’s pretty good to be back home. :) There are a couple more challenges with being home than being at the hospital, but it is much more comfortable for sure! Mark isn’t ready to sleep in our bed just yet, so he slept in the recliner in the living room and I slept on the couch next to him so that I could help with anything he needed during the night. We will probably keep this arrangement for the next couple of days.
Colin is at school today and Carter is home with us. I have to work on getting some things done today. One thing is to make a calendar for all of Mark’s medications. He has to take his pain meds, a steroid, 2 anti-seizure meds, a special mouth wash, and occasionally an anti-anxiety med.
The boys are happy to have their daddy home, but it is a little difficult for them too. Mark cannot handle noise or too much movement around him, so it makes it hard for the boys to be boys. They really try to be on their best behavior. They have said some more things that are pretty funny. One thing is that when they went to the hospital, they came in the room and saw Mark with the bandage on his head. Colin seemed a little uneasy about that, so he backed up to me and said, “Mommy, did they cut Daddy’s head off?” Yesterday, when my friend Lisa brought Carter home from CLC, she reminded him to be quiet when he got inside. He said to her, “That’s ok. We can be wild now because Daddy got that thing out of his head.” This is just so hard to make an almost 5 year old understand!
We were blessed with a few more sweet friends coming to visit us at the hospital. Since it was so far away, we were not expecting to get visitors, so we were amazed at the number of people that came to show their love. It was very nice!
There was a moment yesterday after we got home, that things were difficult for us. Mark was trying to tell me something, but he just couldn’t communicate it to me. He has some struggles with his thinking now, which we know will get better over time, but it makes him very frustrated that he can’t think of the words to say. He got upset with me that I didn’t know what he wanted, so I got my feelings hurt and couldn’t hold back the tears. He felt really bad about that. He is the one that had the major brain surgery, but it has been more difficult on me than I ever would have imagined. I do know that God will lead us through this time and I have to learn how to deal with things like this.
My mom blessed us with a meal last night, and we had a huge blessing from Colin’s Kindergarten Class. The students each made a card for Mark. They were so cute and some were just hilarious! They used phonetic spelling and drew cute pictures of hospital stuff. We will treasure those forever.
I have been taking pictures all along the way so that I can do a scrapbook to chronicle this whole journey. Maybe I will post some pictures soon. I took a picture of Mark’s head when his bandage was off, but he doesn’t want to see it yet.
We are hoping to hear from pathology soon. I hate waiting! Maybe it will be today. I’ll post as soon as we know anything though.

Tuesday, March 30, 2010

Surgery

This may be a somewhat long post again because it’s been a while since I had a chance to update, so I apologize in advance.
So, we have had some ups and downs the last few days. Mark did not have any more seizures, but he was having a little more trouble with the right side of his body. Also, his nerves were really out of control for a couple of days. He was super irritable and worried about his surgery coming up. Thankfully we made it past those days.
One blessing I wanted to share is the one from last Thursday. At CLC, I was surrounded by a small group of AMAZING women who prayed over me. Hearing them talk to God about Mark just touched my heart. It was very emotional.
On Sunday, there was another group of women who came to help me do some gardening. They planted all of our flowers and some trees and bushes and now our yard just look great with all of the colors and life. That was a very nice blessing.
The surgery was yesterday, and it was a LONG day. It was tiring, emotional, and full of blessings! Mark and I got to the hospital early, so we were able to meet his Aunt and Uncle who had driven from Midland to be here for us. Then, my dad came to the hospital, so we got to spend some time with him as well. Mark went for his MRI and then people started showing up to wait with me during the surgery. One friend brought lunch for everybody. It was so nice of her to do that! So, we had Mark’s aunt and uncle, mom and dad. My mom and stepdad were here, my friend Kim, who brought the lunches, and my friend Regan. My mom and John’s pastor came by to visit. We were blessed with a visit from Neal Jeffrey, who had a nice prayer with us also. Mark’s surgery was delayed, so we had a very long wait before he went in. He did finally go into the operating room at about 2:15. His surgery lasted about 6 hours. During the surgery, we had more people come visit. A deacon from the church, Michelle Pinkston from CLC, Luann Ivy from the children’s ministry, and another family member, Jackie Durrett came. I am completely amazed at the amount of love and support we have received. Once Mark went back for surgery, I had a good cry. I completely trusted God to take care of the whole situation, but I had been holding back all of my tears and emotions all day so that Mark wouldn’t worry about anything else. It felt good to be able to release all of that and have my friends there to hold me and comfort me too. Once the surgery was over, Dr. Barnett came to talk to us. He told us several things and it wasn’t what I had prepared myself to hear, so it was a little difficult for me to handle it even though it wasn’t all terrible news. The doctor said that when they removed his skull, his brain was very "angry" and swollen. There had been quite a bit of growth/change in the mass since his last MRI. The radiologist at first said it could be an infection rather than a tumor, but during the surgery, they found no evidence of infection and it looked more like a tumor. We still don't know 100% which it is, but we hope to get pathology results back on Wednesday or Thursday. The doctor said that the mass (infection/tumor) was NOT encapsulated like they had thought at first, but it looks like, according to the interoperative MRI, that they got all of it. Since it did not have defined borders, they can't be sure if there are some "fingers" that were left in there or not. So, now we just wait for pathology to see if Mark will need to do radiation or chemo or anything else. I had another good breakdown and cry after Dr. Barnett told us all of this. I just had prepared for him to come out and tell us that it was a tiny benign mass that was totally contained and that he very simply got it all out and that there is nothing more to be concerned about. Just hearing something different than that made me feel upset. My dad called shortly after the doctor talked to us and he could tell that I was upset, so he told his manager he needed to leave and he came right over to sit with me. He stayed in ICU with me and Mark until 12:30. I was so very tired because I had only gotten about 2 hours of sleep the night before. It was very helpful to have my dad there to help keep me calm and to help look after Mark. I had planned on staying in my hotel room, but Mark was really afraid of staying in ICU alone, so I stayed the night in his room with him, so I got a little bit of sleep on and off. I went ahead and checked out of the hotel and moved my stuff into Mark’s room, so I will just stay with him for the rest of the time that he is here. As far as recovering from the surgery, Mark is doing GREAT! He does not want to know any details about the surgery or what the doctor said. So, I am just trying to focus on helping him to do better. He had an okay night last night in ICU, but he did have quite a bit of pain. He threw up a few times. We think that the anesthesia might have had something to do with that. They gave him morphine in his IV, but it didn’t help his pain so they had to give him oral pain meds and those seemed to help more. He has a central line to give him fluids and other medications. He was able to sleep off and on last night and then they took him at 3 this morning for a CT scan. They were checking for swelling and bleeding in his head. Apparently that was all clear because he was moved earlier today from ICU to a regular room. I can't believe it! I had to leave ICU at 6 this morning and I wasn't allowed back in until 8. When I went back in, he was sitting up in the bed eating (liquid diet). He looked really good and he said he felt good. They took out several of his lines and got him moved to the regular room. He got to eat solid food for lunch and he just devoured it. The physical therapist came to work with him and she said he looks pretty good. He just has some weakness on his right side, so she gave him exercises to do to help get his strength back. His mind seems pretty clear and his speech is just fine. I am amazed that he is in so little pain now. That's a blessing for sure. We had so many people call and come by. It was so nice!
My mom and John came by this morning and stayed for a while. Mark’s parents came up for a little bit and brought the boys because they were sickish today. Colin threw up 12 times, so he couldn’t go to school. Mark’s parents kept him at our house and gave him some medicine to make him stop throwing up and then he started feeling a lot better. Carter just didn’t want to go to CLC since Colin was staying home, so Mark’s mom asked if they could keep him home also. I told her that would be fine. I noticed when Carter was up here this evening that he felt hot so I asked Mark’s mom to take his temperature when they got home. She did, and it was 100.6. She gave him some medicine, so I’m hoping he doesn’t get really sick now. Our friends Joe and Terria came by this morning. It was really good to see them. We got a visit from another deacon at our church and a special visit from Mike Buster and Pastor Graham. I know that meant so much to Mark. I got a lot of phone calls this afternoon from people checking in on us. We have felt so much love since we’ve been here at the hospital! Well, I’m gonna end this crazy long post for now and hopefully get some sleep.

Wednesday, March 24, 2010

No Seizures Today!

Today was a better day for Mark. No seizures! That's a BLESSING! He is really sore from his seizure yesterday, but he had a good time with his dad today. I called his neurosurgeon to let him know about the problems Mark has been having with the right side of his body and they started him on steroids. The PA said that if he has some swelling, it could be causing more problems with that side of his body, so the new meds will shrink things down and hopefully make it a little better.

I went to the doctor today and he is going to do another procedure on my back on Friday. He will do a Selective Nerve Root Block, so I will hopefully get a little more relief after that. He is aware of the situation with Mark and is so nice to rush things along and really try to make me feel better so that I can take care of him. He said if I still have pain after this procedure, he wants me to do the surgery after Mark recovers. He wrote me a prescription for my strong pain meds, so I will be able to function for the next month on that.

We were blessed with 2 meals today. We enjoyed one tonight and put the other in the refrigerator for tomorrow night. It has been sooooooo nice to not have to worry about preparing supper at all for the last couple of weeks. I cannot express my gratitude to all of the people that have helped us with meals.

I want to ask for prayers for a friend of mine also. I found out today that they lost their baby. She went in for her 12 week appointment and they couldn't find a heartbeat and then she had surgery (D&C). She is back home recovering, but I can't imagine how terrible it must feel to go through that. It just breaks my heart. I wish I could do something to help her right now too. She is in NC and I'm here in TX, so I really can't do anything but pray and ask for my friends to pray for her too. Her name is Sara, so I would appreciate it if you would add her to your prayer list and please continue to pray for our family as well. We appreciate all of the prayers that we are receiving. They are working!

Tuesday, March 23, 2010

Another Seizure Today

Mark had another seizure today. :( He has been having some trouble with the right side of his body. He noticed the other day that he had a hard time holding his razor and he has had a hard time writing. We had an irrigation company out to fix a leak in our sprinkler line and they also did some other work for us in our yard. Mark was outside talking to the owner today and they were discussing the bill and Mark started to worry about if his hand would work or not to sign the check. Then he got that aura that he gets before a seizure, so he told the guy that he would send me out to talk to him. Mark came inside and as soon as he opened the door, I knew something was wrong. He started scratching his face and I knew that he was starting another seizure. He walked to the chair in the living room and then the seizure took over. I could see his right leg seizing while his right arm was moving uncontrollably. After about a minute, his leg stopped seizing, but his arm continued to spasm. That lasted about a minute, so the seizure was about 2 minutes total. When it was over, he was totally wiped out. His muscles hurt so bad on his right side, so he has been limping and rubbing his arm. It is so hard for me to watch him like that. I just feel so bad for him and I would do anything to take it away from him. I gave Mark an Ativan and got him settled in his chair. He rested for a while and then our neighbors came over. That was one blessing for today. They brought supper and stayed to eat with us. Mark did not feel like eating, so he just continued to rest while I ate with our friends - their kids and our kids had a “picnic” in the media room upstairs while they watched a movie. It was really nice for me to be able to visit with them. They are such nice people and we really enjoy being with them. Their kids are great and it’s nice to have them play with our boys. When we were done eating, we joined Mark in the living room. By then, he was a little more aware and awake, so he was able to join in in our conversation. After our friends left, I put the boys in bed and we tried to watch some TV, but Mark was just feeling too sleepy to concentrate. He seemed to be getting restless again, and I really wanted him to sleep well tonight in hopes that he will feel much better tomorrow. So, I gave him another Ativan and put him in bed. I pray that he sleeps well all night.

I have an appointment in the morning with my Neurosurgeon’s pain management doctor. I am still feeling much better after my epidural last week. Although I still have a lot of pain in my leg, the pain I was having right below my lower back has gotten so much better. That’s a blessing. My appointment in the morning is about medication so I can continue to function as well as possible while I wait for Mark to have his surgery and recover before I can have my surgery.

I went back to CLC today. It was nice to be covered in love by so many amazing ladies, but it was a bit overwhelming also. Once I got to my classroom, I realized that I forgot to bring Carter’s lunch and my lunch. I had everything all ready to go, I just forgot to grab them before we left this morning. As soon as I realized my mistake, I just couldn’t hold back the tears. That’s when my Angel Kimberly stepped in once again. She asked Carter what he wanted for lunch and went to find out his schedule so she would know what time his class ate. She went down to Main Street (the cafeteria in our church) and bought him lunch and took it to him and she brought lunch for me too and delivered it to my classroom. What a blessing! Before I had even left the parking lot at the end of the day, she called to check on me and see if we needed her to order us a pizza or something for supper. She is just so amazing!

Another blessing for me today was the chance to talk to our Director of CLC, Michelle. She has been exactly in my position before because her husband had a brain tumor removed. It was so nice to be able to tell her exactly how I have been feeling and to find out that it’s normal. She is a huge encouragement to me and I thank God for putting me in an area where I am able to talk to her when I need to. BLESSING!

It’s almost 1:00 in the morning, so I’m going to stop blogging now, and get myself to bed. :)

Sunday, March 21, 2010

Out of the mouth of babes

So, today was an okay day. I had more pain today than yesterday, but I managed anyway. Mark did not have any seizures today, but his nerves were really thin. He was just very on edge. We are not sure if it is his medication or the tumor, but he just has not been able to handle much noise or movement. So, I had to get the boys out of the house for a little while to give him some moments of total silence. Poor guy. I know this is so hard on him. He is such a good daddy and I know it is difficult for him to feel aggravated when the boys are just being boys. It's not something he can control, and I'm sure that is a terrible feeling. He is really good about remaining calm and just letting me know that he needs some quiet time though.

Today, I was blessed by my boys. They brought me smiles and outright laughter with the things they said today. I wish I could tell you the first thing that made me laugh, but it's not something appropriate for posting since it had to do with Colin asking a very innocent, but hilarious question about the male anatomy. :) Then, a little later Colin found a cotton ball and a couple of Q-Tips. He told Mark, "Look at how I can hold the cotton ball by just using these ear picks". Ear picks! That one made me laugh out loud. Another funny thing was that while we were at Wal-Mart, I told Carter I wanted him to stay near me or somebody would take him. He asked me in all seriousness if Colin could come with him wherever somebody takes him. I've really gotta work on safety issues with that boy and put a little fear in him. :)

So, while it wasn't the best day ever, it wasn't the worst, and we were blessed with smiles and laughter from our sweet boys.

Friday, March 19, 2010

Dinner, Friends, & Insurance

Mark had a follow up appointment today with the Neurologist. He was so nervous even though there was no need to be. He gets so worried about going to the doctor for anything. His blood pressure was 169/105 because of his nerves. His pulse was 135. He knows there is nothing to be worried about, but he just can't control it, poor guy! Anyway, we just got refills for his anti-seizure medications and for his "calm the nerves" medicine. :) We let her know what the nuerosurgeon said and about the plan for his surgery. He will go back to see her in 3 & 1/2 weeks. He should be starting to recover from surgery by then.

Tonight we were so blessed with an AMAZING meal brought by a super sweet lady. Thank you Jennifer! Her family blessed us with the meal, a sweet note, and a gift card to Wal-Mart! Oh my goodness! I was in tears because I was so touched by their kindness. Carter could not understand why I was crying. I was trying to explain to him what happy tears are. I don't think he got it. He just gave me a big hug and kiss and said, "I love you, Mommy!" It was precious!

We went to pick up Mark's medication from the pharmacy, and we discovered that the 2 medications he is on total $1,000 per month! So, another blessing for today is that our insurance covers 100%. We do not even have a co-pay! There is no way we could be more blessed in that area!

I have been feeling a little better today with my Sciatica. I think that the epidural injection helped with part of the pain. Now when I take my pain meds, I seem to get a little more relief, so that's yet another blessing.

Mark had a pretty good day today. He was a little tired at times and felt a little strange for a little while, but overall he felt okay and NO SEIZURES today! - Blessing! :)

Wednesday, March 17, 2010

How it Began...

This may be a somewhat long post. I am going to attemt to tell the story of how our blessings began.

I have had a lot of medical issues in the past, so it's not unusual for strange things to happen to me. Mark, however, is always healthy and just never has any medical complications. He does not even have a primary doctor because he never needs to go. As a matter of fact, he is terrified of doctors. Just thinking about having to go see a doctor makes his blood pressure sky rocket because he gets so nervous.

On Tuesday morning a couple of weeks ago, we were just about to leave for school and work. I was taking Colin to Kindergarten and Carter and I were going to CLC (Christian Learning Center), which is the Mother's Day Out program at our church. Carter attends there and I work there on Tuesdays and Thursdays. Mark was leaving for work at the same time. As he was about to put on his shoes, he said that his leg felt weird. When I looked at him, I saw that his right foot was turned in torward his leg and he was scratching his face over and over again. I could tell that he didn't have any control over his hands touching his face. I was very worried and I called 911. The paramedics came and they said everything looked fine. He was able to stop touching his face and settle down once he sat down while I was on the phone with the dispatcher. The paramedics said that his EKG looked fine, and since he was not in any pain, they didn't need to take him to the hospital. They said he should make an appointment with a neurologist. Since I have had a couple of seizures in the past, I already had a neurologist, so I called her and I got an appointment for the next day for Mark. He was very nervous going in, so his blood pressure was very high again, but we knew the cause was just nerves. The doctor orderd an MRI and EEG, which we went to do that Friday. Mark was nervous about doing thoses tests, but was relieved when they were over. We got a call Friday night from the doctor saying that they found a spot on Mark's brain on the MRI. She was certain that the episode he had on Tuesday was a seizure. She needed him to start on some anti-seizure medications right away, so she called some in for him. I had to call her back later and ask for her to call in some medicine to help him calm down because he was just a nervous wreck. Once he took that medicine, he was able to calm down some. The weekend was pretty crazy as we waited for his appointment with the neurologist on Monday. She explained that the spot looked like a tumor and that is what caused his seizure. She wanted him to see a neurosurgeon and talk to him about surgery. We found one that we felt would be really good for Mark. He is a Christian man and a very experienced surgeon. He sent Mark for a CT scan of his body to make sure there were no other tumors that needed to be dealt with. Thankfully, that came back clean, so we only have to worry about the brain tumor. At that point, we scheduled the surgery for March 29th. Mark has had several seizures since the first one, and his medication has been adjusted many times. He had 4 days of no episodes, so we were feeling like he was in the clear. But, yesterday he had another seizure and it was more intense and much longer than the past ones. The doctor wants to keep him on the same dose of meds right now. She said it will be hard to treat the seizures as long as the tumor is still there. She feels that it will be much easier to treat him with medication after the surgery. Then, he will hopefully only have to be on one medication and only be on it for a short while. That is something that we will just have to wait and see though.

During all of this, I have been having a lot of trouble with my sciatic nerve. I had an epidural injection yesterday, and I am hoping to get some relief by the end of the week. Again, we will have to wait and see what happens with that and we will just deal with it whatever the outcome.

As soon as we found out about Mark's tumor, the blessings started pouring down on us. Friends offered to take care of our boys, Colin and Carter, for us when we needed it.- WHAT A BLESSING! A friend from our neighborhood organized meals for us. - WHAT A BLESSING! A friend from CLC organized a Care Calendar with more meals. - WHAT A BLESSING! We received cards, emails, and phonecalls from an amazing number of people telling us they were praying for our family. We were put on many prayer lists. We know there were well over a thousand people lifting us up in prayer! -WHAT A BLESSING! I have not had to worry about missing CLC days, and I have been allowed to still take Carter there even though I am not there. The director of CLC, Michelle, has been in this situation with her husband, so it has been great to have her to lean on during this time. She understands what I am going through and even what I am about to go through. She knows what Mark is feeling and how he will feel during recovery. She held our hands and prayed with us when we were in her office. - WHAT A BLESSING! Mark's work has been wonderful about his time off as well. They have been understanding and encouraging. His managers check on him often and told me to take away his laptop and not let him worry about any work stuff. :) We received baskets from the Charlotte location and the location here. A couple of his co-workers from India came to visit him at our home. They are so nice! Another co-worker of Mark's calls often to check on him. He is such a good friend! -WHAT A BLESSING! It has been wonderful to have family close by to come anytime we need them. Mark's parents rush over anytime I need them to help me after Mark has a seizure. - WHAT A BLESSING! I have not had to cook a meal since we found out about Mark's tumor. We have been covered in love. My wonderful friend took the boys all day today so that Mark and I could have some peaceful time. Another friend is taking care of them tomorrow. And I found out today that there will be a group of people coming for a "garden party" the day before Mark's surgery and they are going to do some planting for us so that when Mark gets back from the hospital, he will be able to enjoy some beautiful color in our yard. Can you believe it? BLESSINGS, BLESSINGS, BLESSINGS! So, although this has been a crazy time for us and it is not what we ever would have wanted, we cannot deny the love and blessings we have been shown through this.