Cowboy Day Cont.

I got so frustrated last night trying to post Cowboy Day pictures that I just had to stop and Brad took over. (By this time, I was asleep, snuggling with my precious daughter...it made me feel all better!) Unfortunealty, he did not post the pictures I wanted everyone to see so here are a few more!







This is not a picture of Cowboy Day, but Phoebe looked so precious in her dress last Sunday, that I decided to share this picture as well.



P.S. There may be some changes in the way our blog looks in the next few days or weeks. I feel the need to do some Spring Cleaning and it is so much easier to do it on one's blog than on one's house :)

Cowboy Day

Welcome Aboard!




Last Tuesday at Kid University was Cowboy Day! I tried to post these pictures before we left, but we were having some computer problems. Eli had really been looking forward to Cowboy Day, especially when we started picking out his cowboy clothes the night before. He told me the next morning that he was dressed like a "real cowboy" and I was only dressed like a "pretend cowboy" because I was only wearing a bandana. (I don't have any cowboy boots and I look funny in a cowboy hat...I did have cowboys on my socks though!) It was a great day even though it was a little windy (okay, A LOT WINDY).



Eli and Dad!








Hold on!



Clowning Around!

Oncology Visit Update

Brad here.

Well, I know there are many who have been checking this site looking for an update regarding our visit to see our oncologist Dr. Strauss in Dallas today. Sorry the post is so slow in coming but following the visit, Jordan and I flew to San Antonio so that I could attend a conference at the La Cantera Resort (by the way, this place is really nice) for my new job.

So...what did we learn. Well, actually we didn't learn a lot but at the same time we learned a lot. Why do I say this? Let me explain further. We learned that Jordan has a tumor on her spleen that we never knew about. However, we learned that this tumor sits underneath your liver and this tumor likely was part of the tumor that hemorrhaged and was removed last month (or at least it metastasized (sp) from the liver to the spleen). We also learned that you can live without your sleen (we are starting to wonder what organs exactly one needs to live...?) Apparently your spleen has two main functions: remove red blood cells and help with immunities when your young. The liver and bone morrow can remove the red blood cells and the immunity thing isn't much of a concern once your older. So, apparently the fact that Jordan has a tumor on her spleen isn't of much concern to the physicians since you can remove it and live a normal life. Nonetheless, this is still a little troubling since it shows that her cancer has been moving around and growing. This leads me to the other thing we learned.

We learned that in addition to Gleevec, there are really three other drugs that could be prescribed to treat these GIST tumors. Dr. Strauss said they all are variations of each other and were developed to treat someone when Gleevec for someone reason didn't work on a particular person for a reason or another. So, this is GOOD news. He said the researchers have enjoyed working on this new drug set and the have made a lot of strides.

Despite these strides, Dr. Strauss said that he believed surgery would be necessary in the future as well (before he had even consulted with Shires who had told us the same thing a month or so ago). The one thing he said that Shires didn't was that he thought having an abdomen surgery and a lung surgery would be too much to handle at the same time and therefore we would likely need two more surgeries. Of course, he said he would defer to Dr. Shires on this. Jordan was bummed if he is right...rightfully so.

Finally, Dr. Strauss showed us our P.E.T. scan CT scan images over layed and it was amazing what you can see. Shoot, I could see the tumors since they were so colorful. The one strange thing the P.E.T. scan didn't show was the tumor in Jordan's lung; however, it showed up again int he CT scan. Dr. Strauss' belief is that the tumor in her lung is a "low grade" GIST...meaning it is probably a very slow growing variety. Of course, the only way to know for certain is to do a biopsy and test it (something we may do in the future....or they may just remove the entire thing and skip the biopsy stage).

Well, there is much more we could say, but this is the basic information. We are doing pretty good and are looking forward to a weekend without the kids (they are with Jordan's parents)...something we haven't had in a long while and that we need. Thanks for reading and praying.

Brad

Back at it...

Brad here.

Well, as I type this entry Jordan is in a P.E.T. scan. I have the kids at my office as it is only a block from where Jordan is completing the scan. Eli is watching Toy Story and Phoebe is enjoying sleep in her car seat. In about two hours she has her two month pediatrician visit. More likely than not, it will be her second visit to the pediatrician and the second time I will take her due to mom being unavailable. It amazes me the lengths to which Jordan will go to make sure I bond with my daughter!!!-)

Back to the P.E.T. scan. The purpose of this scan is to set the baseline for Jordan's chemo treatment that we expect to begin at the end of the week. Dr. Shires explained back six weeks ago that healthy/living tumors like glucose and typically during a P.E.T. scan they "glow" when sugar is shot into the veins. On the other hand, as the tumors die they absorb less and less glucose. Thus, the doctors can measure whether the chemo is working. So, today we set the baseline. Thursday afternoon we have our first "real" visit with Dr. Strauss (oncologist) at Dallas Presby. For those of you who may have forgotten, Dr. Strauss is the doctor who reported about five weeks ago that Jordan's tumors had the C-Kit protein mutation that we were hoping for so that Gleevec could be prescribed.

In any event, we expect Dr. Strauss will prescribe Gleevec on Thursday and we will begin the medicinal phase of our treatment. As such, we likely will have another P.E.T. scan in about three weeks to gage whether the Gleevec is working (as hoped and expected) to shrink and kill Jordan's remaining two tumors.

As for specific prayer requests, please pray that the entire family travels to and from Dallas safely this week, that we are prescribed Gleevec and that it works to shrink and kill the tumors. Also, please pray for our sanity as inevitably returning to Dallas Presby later this week will bring back a flood of raw memories. Moreover, Eli has made many comments over the last three plus weeks that he is happy to be at "his home" and not "Nena's" home in Dallas. For a three year old to say he is tired of being spoiled at his grandmother's house is indeed rare and thus illustrates how our last visit there changed him too.

Thank you for loving us!

Brad

A Few Pictures

I've been having some computer problems and haven't been able to post these pictures until today. Sorry you had to wait. Enjoy!


Here is a picture of Phoebe and I in our matching pajamas. You have to look pretty closely to see that they are matching!
















I guess Phoebe could not deal with the world anymore.










Our beautiful masterpiece with sidewalk chalk. I traced around Eli's body and then we colored him...great fun!











Tuesday night (after a long day at school) Eli climbed up on the couch with me while I was feeding Phoebe. I was going to finish feeding her and then give him a bath, but he ended up falling asleep at 7:30pm. It didn't work out so well for us when he woke up at 6:00am the next morning! He does look pretty cute, though.

Just A Quick Update

Brad and I went to our Small Group tonight and the care and concern there made us realize that there are still people out there who are worried about how we are doing with all this. Health-wise we are doing really well. Brad stopped using his crutches on Wednesday...I'm not sure it was a good idea, but he seems to be doing great. If he walks around too much, his knee will ache that evening,but it is no longer swollen or too painful. Thank you so much for your prayers. I know they were heard. Eli's cough is still here, but it is better. He will only have a coughing fit if he is running around or playing in the cold. If you know Eli, you know that both of those things happen fairly often. He has always been full of "wild bees and gunpowder" as my great-Aunt Anna likes to say and because of that I send him outside even when it's cold. That is why mittens and toboggans were invented...to save the sanity of Moms of Little Boys. I did find a cough medicine that works pretty well and doesn't rev him up too much--Children's Mucinex (the one with an expectorant and a cough suppressant). As a side thought, a friend of mine who is a nurse for a Dr's office says that in her "nurses book" it recommends 1/2 teaspoon to 1 teaspoon of Karo syrup to suppress a cough. She said she tried it herself and it worked pretty well. You learn something new everyday! Phoebe is still pretty congested which makes me worried. Eli was the healthiest baby ever (he still hasn't had an ear infection) and so all this stuff is new to me. I'm doing all the things my pediatrician said to do and it is not getting any worse, but it's not getting any better either. Patience has never been my strong suit and I feel like things should just "get better." Which leads me to me. I am really and truly doing great. I feel like most of my energy has come back (other than the normal tiredness of any mom with a 6 week old...by the way, she usually sleeps till 4am or later so I shouldn't be complaining at all). I think sometimes people think I am putting up a strong front, but really I feel good. I complain that my house is kind of a mess and I can't catch up on my laundry, but who can with a 3 1/2 year old and a new baby? Things are good and we feel like we are finally coming up for air after the flood. I cannot express our thanks in words for all of the prayers, hugs, cards, thoughts, and deeds that have been given to and for us. As I've said before, we are humbled.

In other news, I will post pictures of Eli and Phoebe in the next few days. That is for all the family that likes to check in and who only likes to see them. :)

National Sibling Day

In case you didn't know, today is National Sibling Day. I learned this on Oprah where she did a number of stories on different siblings (like the woman who breastfed her sextuplets for six months!) It made me think of my own two siblings, Ben and Carrie, and what a blessing they have been in my life. I really believe that having siblings teaches you how to deal with other people in the world. (Like how to deal with another person on a long car trip when they are really annoying you) Brothers and Sisters understand the craziness that is your immediate family and think it is normal at the same time. They share your childhood and are keepers of your memories. There is no one else in the world who can make me laugh like Ben-O and no one else who can tell it like it is and take fantastic care of you at the same time like Carrie Beary. They are both a precious gift that I have come to treasure more and more as I get older. I can only pray that Eli and Phoebe have the kind of relationship that I have with my siblings. So take a moment and think about your siblings...after all, it's National Sibling Day!


Here is a picture of Ben, Carrie, and I a few years ago. I think I was just married and Carrie was still in High School. My Mom snapped the pic outside of Taco Bueno and I just love it!

I'm Dreaming of a White Easter...?

This is a picture of Eli and Brad at the only kind of Donut Store in Amarillo (yet another joy of a small town), please notice the way cool Easter Basket donut (also a great thing about living in Amarillo!) that Eli ordered and then decided he didn't want to eat. You can see how cold it was by Brad's toboggan!



Here is Phoebe in her "Easter" shirt that her Aunt Carrie bought for her...isn't she precious?! Have you ever seen such big, blue eyes?




This is our annual Easter picture. I realize it isn't very "Springy", but it was 30 degrees outside and snowing. I also realize that although it was 30 degrees, I still dressed Phoebe in her short-sleeved Easter dress...a girl has to learn to suffer for fashion! :)






Although I told Brad it didn't really feel like Easter, we did have a pretty good weekend. After our donuts on Saturday morning, we all went to Wal-Mart. We made quite a picture with Brad in the motorized carts holding Eli (who had the job of "beeping" the horn) and Phoebe and I with another cart! Too bad we didn't think of taking a picture of that. Brad's grandparents were able to unexpectedly spend the night after their four hour trip from Albuquerque took eight hours. They were planning on driving on to Oklahoma on Saturday, but decided to spend the night with us instead. It was such a treat! They headed out to OK soon after church and we were invited over to some friends' house for lunch. Then we all went home and took really long naps! We didn't have an Easter Egg Hunt, but we did dye some eggs. What, exactly, does one do with 14 boiled, dyed eggs after Easter?

We are all doing pretty well here. Eli has a terrible cough and unfortunately, all cough medicines "rev" him up so he has been bouncing off the walls the last few days. (Where most children get really sleepy with any med, Eli just goes berserk!) Brad's knee seems to be less swollen and hopefully, he'll only have one more week on crutches. At the end of the day he is in a lot of pain and the last two nights, he has iced his knee. His new job is pretty busy and his brain is exhausted by the end of the day. He did say he wanted a challenge! I'm feeling pretty good. I cleaned all the rooms in the house today. Well, I "picked up" all the rooms in our house..."cleaned" is probably too strong a word considering no actual cleaning products were used. It does make me feel alot better, though. Tomorrow I will have to do something calm like filling out Phoebe's baby book because my back is killing me! :) It would be really nice to be able to levitate all the stuff on the floor so I wouldn't have to bend down and pick it up. Phoebe is doing great. We have been so blessed to have such a calm baby! She hardly ever cries and she sleeps like a rock. I only have to get up once about 4:00am to feed her and then she goes right back to sleep until about 7:00am. We are blessed, indeed!

Treatment Protocol

Brad here.

Last week I mentioned that we met with Dr. Shires one last time before heading to Amarillo. Since we were so happy to be home after the three weeks spent in Dallas we didn't want to explain the "treatment protocol" as we currently understand it. Additionally, it is a little disheartening and we simply just wanted to be happy and have good news for a while ( at least primarily good news as my knee was some unexpected bad news).

Anyhow, enough beating around the bush. Jordan's treatment protocol is for us to initially have a P.E.T. scan here in about two weeks time in Amarillo. Then we will travel to Dallas to meet with Dr. Strauss who is our oncologist at Dallas Presby. This will be some time around the end of April/first of May. We expect that during this visit Dr. Strauss will tell us all about Gleevec and finally prescribe it. Then, after a few weeks (probably two) we will have another P.E.T. scan (probably in Amarillo again) and the films will be sent to Dr. Strauss to determine if the Gleevec is working to kill/shrink the two existing tumors (one in the liver and the other in the lung). If they have, we will continue on with Gleevec for a few more months to allow them to work completely. If not, Dr. Shires reports he would like to use a cyber knife (pinpointed radiation) to try to shrink the existing tumors followed by surgery to remove the tumors. Apparently, the existing tumor on Jordan's liver is in a place where it is difficult for him to remove the tumor and also get clean "margins" which is the typical goal with excising cancer tumors from an organ. Moreover, this tumor also sits near/on Jordan's vena cava (sp) which is a major artery. Thus, removing this tumor will be no walk in the park...especially if it hasn't shrunk prior to surgery. Dr. Shires reports it is about the size of a ping pong ball.

Now, the difficult news to hear. Even if Gleevec works as hoped and expected, Dr. Shires reports that to get the "Gold Standard" treatment, he will need to remove the tumors (dead or otherwise). He guesstimated that this additional surgery at Dallas Presby will be some time in late summer/early fall. So.....we basically will have to do this all over again minus the care flight/birth of Phoebe/surprise factor/knee problem/new job for me. Nonetheless, we aren't looking forward to it because it means another likely 10 days to two weeks in the hospital, week at Jordan's parent's house, and recovery at home. Wow, I am tired just talking about it again. Jordan asked me to report, however, that she is much more upbeat about it than I am. This is probably because I am just tired.

Speaking of tired, we continue to get a lot of help from our Christian family here in Amarillo. Thank you so much for the way everyone has been loving on us....especially now that I am on crutches for two weeks. For instance, tonight some friends of ours are keeping Phoebe so we can get a good night sleep. In fact, as soon as I publish this post, we are going to bed.

Please pray for strength and perseverance for our family as we continue our journey.

In Him,

Brad

(Mostly) Good News

Okay, here is the update on Brad's knee. The Dr. called him earlier today and his miniscus (sorry about the spelling) disc is NOT torn (Thank God!). If it had been torn, it would require surgery to fix and that was something that Brad and I were really worried about doing considering all that has been going on with us the last few weeks. Brad only has a deep bone bruise. That means that the bone is actually bleeding and the treatment for that is just to keep icing it and keep Brad off of his knee. He got crutches today! He'll be on those for two weeks. Sooo, the upside is that Brad is not going to have to have surgery, the downside is that he is now on crutches and can't really help me much around the house because he's on crutches and he can only drive my car because his is a standard. This only poses a few problems like: I needed some sweetened condensed milk for a project that Eli and have to do tonight. (Of course, I've known about this for a week, but I've put it off till the last minute.) Brad cannot pick it up on his way home from work because he is on crutches and can't carry anything around a store and I can't drive myself to the store because I've been told not to drive for six weeks after my surgery. (Which, by the way is completely ridiculous because I want to drive NOW!) I think that we'll just have to change how we are going to decorate our Easter Egg for Eli's school project!

In other news, I actually wore a pair of pants today that do not have an elastic waist in them! That hasn't happened in about 8 months because maternity pants all have elastic waists and then I've been sporting pajamas the last few weeks. My friend Tiffani took us to McDonalds today to meet some other friends and we had a great time. (If you live in Amarillo, going to one of the only two McDonalds that have playlands is a grand time...I'll have to blog about that later) It felt good to leave the house again and I know Eli had a blast playing with all his friends! Then I came home and did about fourteen loads of laundry. Okay, that is a bit of a stretch, but it certainly felt like that many. At least now Eli won't have to wear last year's Halloween costume and old camo pants to school tomorrow :) Clean clothes are a good thing! All of this means that today has been a pretty good day and I am actually feeling much better. Tomorrow I will probably pay for it, but I feel like I'm going to have start doing some things so I can get my strength back or I'm just going to shrivel up and never get any stronger. Every day is a little better than the last and I feel like there is a light at the end of the tunnel. Now, if only I could wiggle my nose like Samantha on Bewitched and all the clothes would magically "fly" into the proper drawers. I never did understand why she was so insistent on not using her magic for housework...it just seemed like a waste!

By the way, if you want to know how to decorate a paper egg with sweetened condensed milk, just email me. It is actually very easy and very cute!

Brad took these pictures of Eli and Phoebe "watching" TV this morning. I'm not sure how much Phoebe was really getting out of the Today Show, but Eli seemed to be interested. Can you tell how much he loves his baby sister?

Many of you have asked how Eli is handling all of this. It's hard to know because we don't know how much of his behavior is due to having a new sister or how much is due to my hospital stay and recovery. Of course, the first week my hospital stay was very hard on him. He was staying with my parents in Red Oak (which was a great place for him), but he couldn't come up the hospital to see Mom and Dad was busy taking care of Mom. My parents say that during that time he was always "extreme." When he was happy, he was so giddy he was running in circles, or he was so upset that he couldn't do anything except sob, or he was so angry that he could only scream and pitch a fit. Luckily, by the time I was in a real room at the hospital some of that had dissipated. We still have a moments that are like that, but it is getting better. Being at home has helped quite a bit and I see more and more of my well-adjusted, sweet, head-strong little boy. I worry that he is growing up in ways that I am not ready for because I can't do as much for him as I would like. Because things were so crazy there for awhile, we let a lot of behavior slide that we normally wouldn't. It's hard to get back to disciplining when you still just want to cuddle him up and "make him happy." If you wondering what I need prayers for specifically, please pray that I can be the kind of mom Eli needs right now to get us through these next few weeks.

On a side note, as I was writing this blog, Brad arrived home from his first softball game of the season having to be helped into the house by a friend of ours. Apparently, in the third inning, he fell and did something "bad" to his knee. (He had surgery on the the disc in his knee during his Sr. year at ACU and it is in the same place.) He has an appointment with an orthopedic Dr. tomorrow morning who is a friend of his and told him over the phone that it sounded like he did something to his knee. So, for tonight Brad is out of commission. When it rains, it pours! :)