Is that YOUR medicine?

Grant went back to the clinic today to see Dr. Heym and get more chemo. He actually did REALLY great today. The whole visit was fairly uneventful. When I told him this morning that we were going to the clinic today, he said he wasn't going to get a poke. I was very light-hearted and said oh I think you are. So he started trying to decide which finger he wanted Maribel to poke. I told him he didn't need to pick b/c he was getting his poke in his port today. No response. But, from the time we put the cream on to numb it until they DEaccessed him, he was much calmer than usual and pretty cooperative. Most of the time, all of those steps require a lot of hard work. Dr. Heym didn't even know he'd been accessed b/c he hadn't heard any commotion. Dr. Heym seems surprised every time we see him at how well Grant is doing and how well he handles the chemo. All of his numbers were up today and he checked out fine. He did get 2 drugs today through his port. But, he does not have to go back for another dose until Sept. 10. Woo hoo!
In other news, we went to church on Sunday and Grant went to big church with Rudy and I. We happened to be observing The Lord's Supper. There were many comical statements made by Grant as we tried to explain what was going on and he tried to figure it out. But the one most telling of his situation was when Rudy picked a juice from the tray and Grant very seriously and almost sadly said, "Is that YOUR medicine?"
Trent has been ok'd to attend MDO occasionally through this phase of treatment. We are going to try to take him a few times in September. He is very social and needs to be around some other kids his age.
Also, I am driving a new (to me) car. We were driving to my parents' on Saturday and my check engine light started going crazy. The engine began misfiring and we knew we had trouble. We dropped the boys off and went to the car dealership. We left with a 2004 Explorer. There's always something going on.......

Our Muscle Man

He looks so skinny, doesn't he? He has actually been eating really well. He's been asking for more at almost every meal. He weighs about the same as he did when he got sick, but he has really gotten taller. Grant seems to feel good.
I also wanted to point out the port on the right side of his chest. I know this is kind of hard to imagine when you are just hearing about it. But, it is completely under his skin. Before he lost so much weight, you couldn't really see it, but now it is just a little lump on his chest. He's happy to show it!

Lookin' Good!

Grant went to the clinic for a blood check today. All of his numbers looked really good. Dr. Beam (and everyone in the clinic) thought Grant looked great. The only thing that doesn't seem normal is how emotional he has been. He gets very upset and worked up over some very small things. I just have to remember that he is just not himself when he is on these drugs.

Hope you are all ordering your t-shirts! And don't forget to sign up for the walk....

LIGHT THE NIGHT WALK COUNTDOWN: 46 DAYS

http://pages.lightthenight.org/ntx/FtWorth09/GrantsBigAdventure

The playground is here!

We came home today to a completed playground in our backyard! Ron & Linda with http://www.playnationofnorthtexas.com/ have been so wonderful to us. And of course, we are so thankful for all of our friends at InsurMark. This was such an overwhelming gift!

We could see it from the street when we drove up. I asked Grant what he saw in our backyard. His eyes got really big and he said "my new playground!" He said "I want to play on it right now." He ran out and tried a little of everything. It is going to be so nice to have in our backyard.

Fever Update

Grant's fever broke about 3:30 this morning. He slept fine last night, but woke up sweating when his fever broke. He was able to go back to sleep and he acts like he's feeling good this morning. He has eaten breakfast and we are going to try to play outside for a little bit before it gets hot. Thanks for your prayers!

First Fever

Grant has run his first fever since being at home today. Rudy was commenting on how hot his head was but he always has a hot head. Then, he came and sat on my lap and I felt his arms, stomach, and legs and they were all warm too. We took his temperature and it was 99.4. Thirty minutes later, it was 100.4. We began to get concerned. We are supposed to contact the doctor at 101. We took his temperature every 30-45 minutes all afternoon and it would go up and down with every reading. I finally called the on-call doctor about 7:15. Dr. Akers was not concerned b/c he was not acting sick. He had been somewhat lethargic and his appetite was slightly decreased, but he still played pretty normally all afternoon. If you asked him, he said he was not sick. Dr. Akers said that the chemo should not have knocked down his numbers too much, especially this soon. She said we could give him tylenol and that we would need to call back if he really spiked or started acting sick. He went on a bike ride with Trent, Daddy and Grandpa and played baseball outside after he took his medicine. I think he was feeling fine. He just went to bed with a 99 temp. Please keep Grant in your prayers!

Get your t-shirts!

This is the design for the t-shirts. It will be on the back and just the 4.28 will be in logo form on the front. 4.28 represents Grant's birthdate AND diagnosis date. This design may be familiar b/c of the 26.2 marathon bumper stickers. This was also intentional in that we feel this experience is a marathon that we are just beginning. Isaiah 41:10 is a verse that was given to us when Grant was in the hospital and really brought a lot of peace during some intense and stressful times. The shirt will be gray and the cost is $10. If you would like to order one, please email my cousin, Shelly, at skcs77@yahoo.com. You will need to let her know what size(s) you need. You can pay Rudy or I, or Shelly at the Light the Night walk. The sooner we have your money the better. You can order any size all the way down to onesies. The kid shirts will be a little different b/c they are too small for this print. But, they will be similar. We have to receive your order by Sept. 23rd. Don't miss out! It's the hottest style for fall! =)

LIGHT THE NIGHT WALK COUNTDOWN: 51 DAYS

On the road again....

Who would have ever thought that we could get so excited about Grant getting chemo? His ANC almost doubled since Monday to 1460 today. He did well after having almost 3 weeks off. He did have to have his port accessed today, which went fairly well. There was still some screaming and crying, but he recovered very quickly. He got 2 drugs through his port. The first one was Vincristine, which he has been getting somewhat regularly throughout treatment. It is the one that causes him to have some leg pain/restlessness. That causes him to have some trouble sleeping as well. The second one is the drug he has been getting by spinal tap. During this phase of treatment he will get it through his port. Every 10 days, they will increase the dose he gets unless he gets to a point where he can no longer tolerate it. Then, they will continue to give him the last tolerable dose for the rest of this phase. He may be able to increase the amount all the way up to the last treatment. We will just have to watch to see if it is too hard on him at some point. This feels like we are putting him through some kind of torture to see if we can push him to his limit.
The entire clinic celebrated with us that Grant reached the necessary numbers. Even a family we met today saw us again in the playroom and were so excited to see that Grant was getting his chemo. We just so appreciate everyone that is in this fight with us.
We also celebrated with lunch at Sam's, of course. It was very interesting b/c we met another family who has a little girl that just finished all of her treatment. She is completely finished and offered much hope to me in such an innocent way. She told me she used to have leukemia and that she used to be bald like Grant. She had beautiful, long, brown hair! They were such an encouragment. We also saw another family that we see at the clinic. It was the place to go for cancer patients today!
Grant will go back to the clinic next week just to check numbers and make sure he doesn't need any transfusions. He will not get any more chemo until the following Monday.

More Delay

Grant's ANC was 740 today....so close. Dr. Akers said that it can fluctuate and if we took it 2o min. later it could have been 760 or 720. I wanted to ask if we could come back this afternoon and try again, but I didn't think she would go for that. ;) So, the plan is to go back on Thursday and hopefully start treatment. This next phase of treatment is in 10 day intervals. So, we wanted to stay on a Monday/Thursday schedule so we could see Dr. Heym at every other visit. Grant has been doing fine at the clinic. They have just been doing a finger poke to get enough blood to do the CBC. However, today his blood clotted in the tube before they were able to run the test, so we had to do it again. He is a little confused about why he keeps going to the clinic and not getting a "poke" (accessed). But, I don't think he is too sad about it. All of his other numbers had gone up and looked really good. Keep praying for Thursday!

Light the Night Kickoff

We got to attend the Light the Night kickoff today at the FW zoo. It was hot! We got to see all the animals (who were hot) and then we went to the pavillion for lunch. Hamburgers and hot dogs were provided and then the kids got to see an animal show while Rudy and I got more information on The Leukemia and Lymphoma Society and Light the Night. The highlight, for me, was a dad sharing his story about his son battling leukemia. His son is 3! It was very heart-wrenching to listen to, but also gave me a peace. His son is a year into treatment and doing very well. We are all just hoping for research to develop even newer and better ways to treat and cure this disease. The boys were wiped out and fell asleep in the car. We had a lot of fun!

Home Again

We had a great trip to Houston. Grant was SO excited to see Uncle Keith! I don't know what was more exciting...seeing Uncle Keith or getting to watch movies in the car. :) Grant had no problems with riding in the car. I think he could have driven for days if we kept the movies coming. Trent had a little harder time. He doesn't know how to sit still for very long.

We had a very exciting arrival b/c it started pouring down rain about 15 min. before we got there. Keith got held up at work, so he had to find a way to get us into his apartment. Long story short...we were all pretty soaked by the time we got inside. Looking back, it was pretty funny, but at the time, it was crazy. Grant thought it was so funny that we were getting wet. He wanted to wear his hat so his head didn't get wet.

On Friday, we got to go to Keith's office and meet all of the kind people that gave blood and contributed to getting Grant his playground. Everyone was so friendly and made us feel very welcome. Although, I'm not sure how much work gets done in that office. ;) Thank you InsurMark!

One of Keith's friends came over with his little girl on Friday night. She turned 3 today, so she and Grant played well together. Grant really enjoyed his playdate and was sure to tell Daddy about it when he got home.

This morning we went to Brazos Bend State Park and hiked with the alligators. Some of the alligators were pretty close to us. I was a little jumpy, especially when Grant was walking on his own and not riding in the stroller. We actually tried to scare him and told him the alligators would eat him for a snack so that he would be careful. It was a lot of fun.

Then, we headed back home. The trip home was very successful and uneventful. It was a really fun trip away for a few days and Grant did great.

Off to Houston

We are going to try to make the best of our time waiting. Since Grant is feeling pretty good, my mom and I are taking the boys for a quick trip to visit Keith in Houston. Grant is so excited! I made the mistake of telling him 2 days ago and we've been talking about it nonstop since. Keith's company, InsurMark, is so generously getting Grant a playground for our backyard. So, we are going to take this opportunity to join them for lunch on Friday to say 'thank you'. Keith is pretty good about wanting to plan things for us to do when we come visit. But, this time is a little difficult....b/c we can't do anything, just ask Grant. :) We will have fun anyway. I'm just looking forward to going somewhere for a couple days. Please pray that Grant will be able to travel the 4 1/2 hours with no discomfort and that he will not get an infection.

Waiting for God's Timing

Grant went to the clinic this morning and saw Dr. Heym. He was getting his numbers checked and hoped to start treatment today. He needed to reach the all-important ANC of 750. He was up from 80 last week to 210 today. Obviously not good enough to start treatment, but improving. Dr. Heym was still not concerned and said this is common. Again, we were a little disappointed. Dr. Heym said that Grant looked great and is otherwise healthy. All of Grant's other numbers were on the rise and he will not return until next Monday to try again. We are trusting that God's timing is perfect. We may never know why He is allowing Grant to wait another week, but we trust that He is Sovereign.
Grant is actually feeling really well. He does not have a bunch of drugs in his system. The only medication he is taking right now is an antibiotic to help prevent pneumonia. He is eating much better, which showed on the scales today. This is the first time his weight has increased since he has been off the steroids. He is still having a little trouble sleeping through the night and he is awake at the crack of dawn. But, he doesn't seem to be tired. And so we wait again......

Grant had a fairly easy day at the clinic. His blood transfusion went smoothly and he was in a much better mood. Nothing unusual to report. Please just be in prayer that his ANC reaches the required 750 by Monday so that he can continue treatment. We are so thankful for all of the prayers being lifted up for all of us. We know that God is in control and is our strength.

In the picture, Grant is getting to put his painted handprint on a treasure chest. This chest will have prizes in it for the kids to choose from when they have to have a procedure. Cathie, the volunteer in the picture, is so wonderful. She works so hard to entertain the kids and keep them busy and distracted. Grant is really warming up to her and he talked her through the whole Cars movie today.

Tough Day

Grant returned to the clinic today. We were expecting him to start the next phase of treatment. However, he did not make numbers today. He needed to have an ANC of 750 and his had actually dropped to 80. This was disappointing to us, but not surprising to Dr. Heym. He said this is very common. We have to remember that Grant just finished 8 weeks of very intense treatment. And it is somewhat cumulative, so his body is just trying to recover. This particular count is the one that his body has to produce on it's own. So now we just wait. His red blood count was also low, which we suspected. We will go back to the clinic tomorrow for a blood transfusion.
Grant did not have a very good day at the clinic today. He was very anxious about everything and would not even let Dr. Heym examine him. He even prayed tonight, "Help me to get rid of this leukemia and don't go to the clinic."
On a lighter note, he is learning to work his situation. He told me this weekend that he could not pick up his toys in the backyard b/c he has leukemia. He can't do a lot of things, but that is not one of them. ;)