Light the Night Video

Thank you to Pam for putting together this amazing video. We hope it blesses you as much as it has blessed us. And we hope you know how much God loves us!!!

Grant loves his leukemia party movie and sings along with it. We watch it several times a day.

SUCCESS

Grant had a good day at the clinic on Monday. He was not as easily distracted though. It doesn't take him long to know what's going on. He still handled the shot and getting his port accessed really well though. I usually judge the success on the length of recovery time. He is not getting hysterical and stops fussing as soon as they are finished with the needle. SUCCESS! His counts were actually really good. His ANC was way up b/c of the steroids he took all week. And his red blood was holding steady. They told us his numbers would start to decline at 7-10 days. But, they will not be checking his counts again until next Monday, unless we think he needs a transfusion. He handled the chemo a little better this week and we were a little more prepared for what to expect. We've stayed on top of the anti-nausea medication and he asked for it tonight. He didn't feel very good and didn't eat any dinner tonight. This was a drastic change from the last 3 days of severe munchies from the steroids. He is getting a break from the steroids this week and will start them again on Monday.

The pumpkin in the picture was from the clinic. They had a bunch of hand-painted pumpkins that were donated to the clinic for the kids. The nurses and volunteers saved the Cookie Monster for Grant.

Happy Juice???

We've been saying all along that God is doing miracles in our lives everyday. But, sometimes they are easier to see. Today was one of those times. Grant went in for the first in a series of six shots of chemo in his legs. They told us that he would have to have one in each leg every time. When we got there today, they were so excited to tell us that they were going to be able to do it with one shot each time. Yay...half as many shots! We put cream on Grant's leg, which he doesn't like and it makes him walk funny. But, he just went on playing. Then, it was time for the shot. The nurses and child life advocate, Denee, were dreading it. Grant and I went into the procedure room and Denee gave him a viewfinder. The nurse asked me if I wanted her to count for him, but I thought the anticipation would be worse for him, so I told her to surprise him. He was playing with the viewfinder and asked me to look inside. When I did, he jumped and squealed. We both looked down and Melinda already had the needle in his leg. I redirected him to the viewfinder, she finished with the shot, and we were done. No crying!! No screaming!! It was the most amazing thing I had seen and the nurses were speechless. Most of the time, when I come out of the room crying, it's b/c I'm stressed and drained. This time I came out crying b/c I was so thankful for answered prayer. Isn't it funny how we pray for something, but then we are so amazed when God does exactly what we asked? They observed him after his shot and he didn't show any signs of a reaction.

Grant had a really wonderful day all around. He felt better today. And we kept joking that they gave him the wrong medicine in his shot and it was happy juice instead of chemo. He was so pleasant all day. He is also taking his oral medications much better. He is still struggling with congestion and difficulty breathing. We got a new prescription today to help with allergies, so we are hoping that will ease his discomfort. All in all, this was a great end to a very difficult week.

Grant will go back on Monday for another shot and 2 chemos in his port. Then again on Wed. and Friday for more shots.

Please keep praying. Our lives are a daily testimony that prayer is powerful.

Delayed Intensification

Grant started his last phase of treatment before maintenance today. The protocol calls for this last really intense phase of treatment b/c the studies have shown that the results were much better for kids who had this phase. But, boy, are we in for a long 8-10 weeks.
Grant had an absolutely GREAT day at the clinic. He had to be accessed to receive 2 chemo drugs through his port. He also had a spinal tap. Through all of this poking and discomfort, all he did was say he didn't like it and fuss a little. It was amazing and wonderful. I know that this was the answer to so many prayers.
But, the treatment today has hit him really hard. By this afternoon, he was feeling pretty terrible. He is very nauseous and is vomiting regularly. He is having trouble keeping anything down. He did finally eat 2 pieces of bread and butter and kept them down this evening. He is still battling a head cold and is very congested, so that is not making things any easier. He also started steroids again today and will be on them for 7 days.
We are very anxious about the next few days. B/c Grant had the chemo by spinal tap today, he will have to take the "rescue" drug to help prevent another TIA. And it is so hard to see him not feeling well and just not himself. For example, Grant just cried inexplicably for about an hour this afternoon. I didn't know what to do b/c he didn't know why he was crying. So, I basically just sat next to him and cried too. :(
Please just know that we appreciate and covet your prayers! Our God is big and He cares about us. Even when things seem out of control and frustrating, He holds us in the palm of His hand.

2 Corinthians 1:7-11

"And our hope for you is firm, because we know that just as you share in our sufferings, so also you share in our comfort. We do not want you to be uninformed, brothers, about the hardships we suffered in the province of Asia. We were under great pressure, far beyond our ability to endure, so that we despaired even of life. Indeed, in our hearts we felt the sentence of death. But this happened that we might not rely on ourselves but on God, who raises the dead. He has delivered us from such a deadly peril, and he will deliver us. On him we have set our hope that he will continue to deliver us, as you help us by your prayers. Then many will give thanks on our behalf for the gracious favor granted us in answer to the prayers of many."

Thank you for being the 'many'. We know that God is listening and answering prayers.

Sick Update

Well, Trent's fever was gone by Friday morning and he seems to be feeling just fine. However, Grant did not sleep well and was very congested. I called the clinic on Friday to see if there was something over the counter that we could give him to help him breathe. Well, they didn't take it very lightly even though he was not running a fever. They wanted us to come in to see the doctor so Grant could get antibiotics before the end of the day if he needed them. It was inconvienent, but fine with me. I fear the weekend! As soon as we walked in the door, they escorted us to an isolation room and everyone was wearing masks. They weren't taking any chances. Getting Grant to wear a mask to move rooms was a little difficult, but he finally complied. Dr. Beam examined him, but said he looked too good to even take a blood sample. We didn't think he looked very good, but I guess, under the circmstances, he did. We left with an order to get Mucinex over the counter and a prescription for bedtime with something in it to help him sleep. It didn't work! We gave it to him last night and he didn't sleep any better. He's still not feeling great, but we all know that doesn't slow him down any. Please just pray for relief for Grant and that we can ALL get some rest!!

Trent's Fever

Well, after a LONG night, Grant woke up this morning with no fever. Praise the Lord! He has some congestion, but seemed to feel better today. After a couple nights of not sleeping well, he is pretty tired and irritable. We are all tired!
Tonight we had our class at the hospital and Grant gets so excited to play with friends and pack his lunchable for dinner. But, as I was circling the parking garage, Trent started throwing up. I had taken their temperatures before we headed downtown to make sure they weren't running fever. Trent's was 97.7. I took it after I got parked in the parking garage and it was 99.5. So, I cleaned up that mess, called Rudy, and we all headed home. Grant was so upset that he didn't get to stay and play. But, he was really torn b/c he knew that Trent didn't feel well and that made him sad. So, Rudy and Grant went to a friend's to play. Trent seemed to be feeling better after he took a bath and his temperature went back down. He had some crackers and played a little, but then acted ready for bed. His temperature was back up when he went to bed. Please pray that Trent recovers quickly and that Grant will not be affected.

What's Coming

I forgot to mention Grant's visit to the clinic on Monday. He just got a finger poke and didn't even cry. Woohoo! Everything looked good and his numbers are high enough to start the next phase of treatment. This will begin on Monday, Oct. 19th. This phase requires 8 weeks of treatment, but could last longer if he has a delay in the middle to wait for his numbers to recover. This will be a pretty intense phase of treatment and will probably be pretty hard on Grant.
Today, Grant is running a bit of a fever, so we are just keeping an eye on it. He doesn't seem like he feels very good, but we don't need to call the doctor until 101. Please pray that his body can fight and this resolves itself.

We are Blessed!

Wow! What an experience! Our family is blessed to have so many people loving us and supporting us through this time in our lives. Our team was outstanding and we raised over $9000 for the Leukemia and Lymphoma Society. We had about 70 friends and family join us for the walk... in the rain. I don't know what happened. "They" said all week that it was going to be a dry weekend, but "they" were wrong.

The party started at my parents' where a lot of us gathered for burgers and fellowship. Grant was in heaven with all the kids to play with. He woke up so excited that morning and just couldn't wait to start his "leukemia party". We did have a cake for his party that he loved! We sang "It's a leukemia party for you...." to the tune of "Happy Birthday".

About 4:00, we headed downtown to join the Light the Night festivities. Just as we all walked into the square, it started pouring. We were all trying to squeeze under tents that were set up. The heavy rained lasted about 20 minutes, but it sprinkled off and on for the rest of the evening. It was enough rain to wipe out the sound system, so we didn't get to hear any of the testomonies or have the live music. But, they still had food!! We all got our balloons and it really was amazing. Grant was so excited about his "special" white balloon. He wanted to walk the whole time, but had to be carried part of the way or we would have been there all night. There were so many people there, our group got all split up. It started to rain heavier about halfway through, so we bailed! We were pretty wet and cold. Overall, despite the weather, we had a great time. The best part was watching Grant have so much fun. We just want to say THANK YOU, THANK YOU, THANK YOU, to everyone that participated with us and ALL of our friends and family that are fighting this fight with us!

(Thank you to my cousin, Shelly, for working so hard to organize our team for the walk and manage the t-shirts!)

Thank you Walkers!

The Light the Night walk and entire day went well. Please stay tuned for an update and pictures when I'm not so exhausted. THANK YOU to each one of you that braved the weather and came out to support Grant.
Do not fear...for I am your God. I will strengthen you and help you... Isaiah 41:10

Ups & Downs

Grant's play therapy and our class at the hospital are both going well. We are learning a lot about ourselves and Grant. Grant really looks forward to going to play with Ms. Mandy. And she always comes and talks to me about his play, but tells me that she has fun with him. But, it's kind of like your car doing something wrong, but when you take it to the shop it won't do it. :) He plays like an angel with her and struggles at home. Well, today was different. His play actually improved with Ms. Mandy, but when they rejoined Trent, Nana, & I in the other play room things were a little different. He had several meltdowns due to frustration. Mandy was able to address the situation where I could observe. I was actually glad to see that the techniques did not immediately fix the problem. I think they will in the long term, but it encouraged me that I was not failing. It just makes me feel like it's not fair that Grant is having to go through all of these tough things, especially at 3 when he is just trying to figure out life. Keep praying that we will all learn positive ways to cope with this situation and remember to trust God for our strength.

ONE MORE WEEK

The Light the Night walk is next Sunday, Oct. 11th. If you are planning on walking, please be sure you sign up on our team at http://pages.lightthenight.org/ntx/FtWorth09/GrantsBigAdventure. This is how they will know how much food and how many balloons to have. Grant is so looking forward to his "leukemia party". Apparently, the way I described it made it sound like a party. I told him all of his friends were coming to see him and we were going to carry balloons. Sounds like a party to me! We would love to have you all join us. :)

Moving Along

Grant went to the clinic on Thursday for a scheduled visit. Dr. Torres examined him again and found nothing abnormal. Getting his noodle was a little more difficult than it has been, but not as bad as I was expecting. He did fine with getting his chemo and we were in and out in about 2 and a half hours. This was the last treatment in this phase. Now he will have to make numbers to start the next phase. As of Thursday, his numbers were still fine. But, he has to wait 2 weeks, so his numbers will have to still be up at that time. He has another appointment for Monday, Oct. 12th for a blood check and to see Dr. Heym.
I was able to talk to Dr. Torres (who happened to be the on-call oncologist that looked at the MRI and discharged us from the ER) a little more about what happened with Grant. It was a lot less stressful and easier to think. The official diagnosis is a TIA (which I can't remember what the letters stand for). The definition is an episode with stroke-like symptoms with no evidence on the imaging that resolved on its own. Dr. Torres told me that both, her stroke team and the group that was doing the study on Grant, are doing more research on his case. She told me that they don't really have a lot of cases to compare it to b/c it's actually more rare than I originally thought. Since he will continue to get chemo by spinal tap, he will have to take a "rescue drug" the day after to try to help prevent this from happening again. But, he will be at risk each time.
Please pray that Grant's numbers will remain high enough to start treatment. And please pray for protection from the flu. We will be pretty isolated from now on.
I have good plans for you, not plans to hurt you.
I will give you hope and a good future.
Then you will call my name.
You will come to me and pray to me, and I will listen to you.
You will search for me. And when you
search for me with all your heart, you will find me!
Jeremiah 29:11-13