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Bowling is a Christmas Eve tradition

Jesus' Birthday

Hope you all had a Merry Christmas. Grant woke up Christmas Eve not feeling too great but it didn't slow him down. In his words "this was a great Christmas". Of course, he got everything he asked for. We did get snowed in on Christmas Eve at my parent's house. So, we celebrated Christmas at home on the 26th. Thankfully, the boys knew no different. We are so blessed and loved so much that God sent His Son. How overwhelming!

Grant went back to the clinic today to start maintenance. We took Uncle Keith with us to show him around. They both did really well. ;) Grant struggled a little with the accessing of his port. But, nothing really abnormal. He still just has so much anxiety over it. But, after that, things were a breeze. Dr. Heym said his lungs sounded clear despite his pretty severe cold symptons and gave the ok to start treatment. His numbers had actually dropped even without being on any medications for the last 2 weeks, but were still ok as well. His loopy pill really worked well this time and he became very entertaining. His spinal tap went very smoothly without even a peep. Then, he got chemo in his port and he was deaccessed. He didn't even fuss when they pulled the tape off. I was so proud of him. He had a few bouts of nausea this afternoon, but seems to be feeling pretty good. He also started an oral chemo and his steroids tonight.

Please pray that Grant can get rid of his cold, so that he is not battling that along with all of the treatment.

Time Off

Grant's visit to the clinic on Monday was very uneventful. Dr. Heym said that his counts had all recovered into the 'normal' range and he looked great. Grant will not have to take any chemo at home or go back to the clinic until Dec. 28th. At that time (exactly 8 months since diagnosis), he will start maintenance. Dr. Heym gave us an end date of August 2012. Yes, it seems so far away, but we know that treatment is not endless!
We made treats for everyone at the clinic and got to deliver them on Monday. Grant was SO excited! He ran around handing everyone their little bag and even gave out a few hugs (very uncharacteristic for Grant). It was fun to watch him be so happy. When we told them all Merry Christmas b/c we wouldn't be back until after Christmas, they all sadly said 'awww'. It is a little sad and crazy that we won't be back for 2 whole weeks! But, we are so excited to be at this stage of treatment. We are also glad that this break aligned with Christmas. He should feel really great...like himself for all of the celebrating.
God's timing is always perfect and His ways are higher than our ways!

Christmas Activities

We have been doing all kinds of Christmas-y things this week. We spent one day making treats. Grant loves to make the cookies, but doesn't really like to eat them. Trent has little interest in making the cookies, but loves to eat them. They make quite the team! Grant likes to help in the kitchen and does a pretty good job.

Friday, we got to ride on the North Pole Express in Grapevine. Great Wolf Lodge sponsored the event for sick children. They did a little show and then the kids got to ride on the train. And, of course, Santa made the rounds during the ride. Grant was SO excited about riding the train. He was most excited about getting his ticket. Lucky for us, they gave us souvenir tickets. It was even more special b/c he got to ride with his friend, Meg. She is a few months ahead of Grant in treatment, but they see each other often. They all had a great time.

Tonight, we went to a Christmas parade. The people on the floats were throwing candy, so that's all that mattered. Grant didn't even like most of the candy, but the thrill of running out to get it was too much to pass up. Trent was amazed and sat on the curb waving the whole time.

We are just so glad that Grant is feeling good. He finished up a round of oral chemo at home tonight and will have a few weeks off until after Christmas. Please continue to pray that he will stay healthy and we will be able to be 'home for the holidays'.

Check-up

Grant's check-up at the clinic went well yesterday. His red blood count responded really well to the blood he got on Friday. His other numbers were a little low, but still ok. He seems to be feeling well. He is finishing up some oral chemo at home this week and then he will have some time off. He was scheduled to start again on the 21st, but, kindly, Dr. Heym said we could wait until the 28th. Yay! No more treatments until after Christmas. He will still be going in at least weekly for blood checks and will receive transfusions as needed. Thank you for your prayers during this intense and difficult phase of treatment. God is good!

Christmas Party

Grant did return to the clinic on Friday to receive blood. He has had PLENTY of energy since then. Grant's friend at the the clinic, Cathie (a volunteer), was so sweet to give him the Grinch movie. So, we had a fun night Friday, ordering pizza and watching the Grinch together.

Today we got to go to the Cook Children's hemotology/oncology Christmas party. We went to the ICE exhibit at the Gaylord, which happened to be Grinch-themed. It is 9 degrees inside the exhibit, so they give you giant parkas to wear. There were also ice slides for the boys to go down. Trent did, but then he looked like the kid from The Christmas Story b/c he just laid there on his back until someone stood him up. It was hilarious. Then, we had donuts and hot chocolate and the boys got to decorate a gingerbread man. They definitely ate more candy than they put on the gingerbread man. It was in a large room that only had tables set up in the front part. So, the kids had fun running around (and burning off the candy energy). All of Grant's friends from the clinic were there, including his doctors. It was a lot of fun and we are so thankful for all of the things that are provided for us to do.

Grant will return to the clinic tomorrow for a blood count and to see Dr. Heym.

Staying Busy

If this tells you anything about our week....I know it's been a while since I updated. It just seems like we are always having to do something.
We had a nice, uneventful Thanksgiving....just the way we wanted it. Grant and Daddy left for the hospital about 7:30 and returned home about 11:30. We headed over to my parents' for the rest of the afternoon and a traditional Thanksgiving meal. I actually wanted to blog that day about so many things I am thankful for right now. But, I got too emotional just thinking about it to actually be able to type it out. In short, we know we are blessed!
Grant has gone to the clinic every day this week so far. He goes for his last day of treatment tomorrow. But, depending on his blood counts, may have to go back on Friday for a blood transfusion. His counts have been on the decline and the transfusion is likely.
He had a tough day being accessed on Monday, but he only had to do it once. He just stays accessed all week when we have to go everyday. That night he had a nightmare and was sitting in his bed screaming, "No no, that hurts! Stop!" Heartbreaking!! He also had to get his H1N1 shot today. Not fun! Monday was also interesting b/c Trent went to the doctor and was diagnosed with croup. He has been on a 3 day steriod. Croup is contagious so we are being extra extra careful. I think Grant was a little excited that somebody else was taking medicine.
We are getting so close to maintenance. Grant is taking oral chemo at home. He will go back to the clinic for blood checks for a couple of weeks. Then, when he "makes numbers" again, he will start maintenance.
Grant is very excited about Christmas! We put up our Christmas tree and got the house decorated. He has been playing with his nativity scene endlessly. He puts Mary, Joseph and baby Jesus in the stable and then lines all the other people up to look at Jesus. So perfect. I can't wait to be in that line!

Grant made numbers!

Grant went to the clinic today and was able to start treatment. He kept telling people all day, "I have a pole today, b/c I made numbers. Hee Hee!" It was really funny to hear Grant talk so grown up about "making numbers". Sadly, he probably knew exactly what he was talking about. He got several chemo drugs and a spinal tap. He had a pretty good day, especially considering how long it was. We got there at 10 and left at 5:30. Since he had a spinal tap, he took the loopy pill, so that made him pretty mellow and silly. He watched several movies and did some painting. He will go back to the clinic tomorrow and Wednesday for more chemo. Then, he will go to the hospital on Thanksgiving for an outpatient treatment to finish off this week. He will go back to the clinic Monday - Thursday of next week as well.

Go Grant's Big Adventure!

Rudy and I were invited to attend an awards ceremony and celebration with the Leukemia and Lymphoma Society at a Dallas Stars game tonight. We knew that it was to show appreciation for how well our team did with the Light the Night walk. But, we didn't realize how great it really was. Grant's Big Adventure came in 5th overall out of North Texas teams, which includes 120 counties. The North Texas walks included 9600 walkers that raised $950,000. Our team raised almost $10,000. We are so proud of our team and hope to do as well next year. Great job Grant's Big Adventure!

We Will Wait

Grant went to the clinic today anticipating starting the rest of this phase of treatment. However, he was not ready. His ANC needed to be at the magic 750 and it was at 150. So, we will have a week off and try again next Monday. Please pray that his body can recover quickly. He is feeling much better and all of his other numbers were fine.

Go Rangers!

Grant having fun with the mascot!

Trent running the bases with Ian Kinsler and Kristie (child life).

This last one is just a hilarious picture of Trent wearing Rudy's shoes.

We were invited to participate in a special event with Child Life and the Sunshine Kids (an organization that sponsors events for kids with cancer) at the Ballpark in Arlington with the Texas Rangers. We went to the stadium this morning and the kids got to have a "play day" on the field. They got to field balls with Rusty Greer, take batting practice in the batting cages, and run the bases. They had an autograph session with some of the players...Ian Kinsler, Michael Young, Kevin Millwood and others. And we were provided lunch on the patio....hamburgers and hot dogs, of course. Grant still isn't feeling well, so it took him a while to warm up. But, Trent had a blast!

Feeling Yucky

Grant actually enjoyed watching tv all day in the hospital.

Grant had a visit to the Grapevine clinic today. He got a good report from Dr. Heym and his numbers were good. This week is a week "off", meaning he doesn't have to get any new chemo. He finished up a week of steroids today, THANKFULLY. Those steroids just make him not feel like himself. Since we came home from the hospital, he has asked everyday to take his nap. And then he asks to go to bed at night between 6-7. He has been eating as often as we will let him. He is bloated and uncomfortable and is losing his hair again. It is so hard for us to see him so miserable and not wanting to do any of his normal activities. Nobody is having fun, but we are counting down the weeks until Grant reaches the maintenance phase. It still won't be a walk in the park, but it will not even compare to what he is going through right now.

Grant has another appointment next Monday where we will plan to continue with treatment, which will be 4 weeks. However, he does have to have an ANC of at least 750 to continue at this point. Please pray that we will not have any delays and can move through this phase as fast as possible.

Headed Home

Grant's ANC jumped to 414 this morning. We are packed up and ready to head home. Dr. Heym said he looked really good this morning. We are waiting to get his last shot today and then they will have to observe him for an hour. After that, we can go. We will have to be careful and isolated b/c if he gets another fever, he is probably right back in the hospital. He will go to the Grapvine clinic on Monday to see Dr. Heym and get a CBC. Thank you all for your prayers!

Slow Rise

Grant's ANC is 90 today. He is having a hard day so far. Everything that he got yesterday is settling in and making him very uncomfortable. His legs are really bothering him and are very restless. He is EXTREMELY moody. You just don't know what you are going to get from one minute to the next. We were able to go for a walk outside, but Grant had to wear a mask (which he actually did willingly). We will be in the hospital at least until Thursday, possibly longer, depending on counts. Thank you for continued prayers.

Restarting Chemo

We saw Dr. Heym and he is ready for Grant to start chemo again. So, Grant will get everything today that he was scheduled for yesterday. Then we will wait and see what his counts do. When we got to the ER, Grant's ANC was 50 and today it's 60. Still have a ways to go. And all of his other numbers actually dropped some more. So, we will see....

Still Waiting...

Grant had a little fever last night, but did not get high enough that they had to treat it. He slept really well and is feeling good this morning. He has been eating cheerios like crazy which is convenient b/c they are available on our floor. He also asked to try Rudy's hamburger for the first time last night and liked it. He was very excited to eat pancakes for breakfast this morning.
They took another blood sample early this morning, but it clotted before they tested it. So, they will have to come back to take another sample at 11:30. We've seen a medical student in the practice that is following Grant this morning, but are still waiting to see Dr. Heym. I assume we won't see him until after we have the results of the CBC. Right now, Grant is content to watch tv. (Our tv is really terrible. It doesn't have any green in the picture. He watched Cars last night and Chick Hicks was brown. He doesn't seem to care.) He is still very congested, which the antibiotics are supposed to be helping with. He is on 2 of the strongest, all-encompassing antibiotics. He will not be able to leave the room b/c his numbers are so low. They don't want him exposed to anything. And, apparently, they have to wait 6-10 days for the results of the H1N1 test b/c they send it to the state. I would be shocked if it was positive b/c he doesn't feel that bad. We will keep you posted.

Hospital Update

Grant spiked a temperature last night, so after talking to the on-call oncologist, we headed to the ER about 11:30. They did all of their usual poking and prodding. His blood counts came back and his white blood count and ANC were VERY low so they decided to admit him. He was supposed to have another shot, 2 chemos in his port and start steriods today. But, he will not be doing any of that. We will just wait....
The good news is that his x-ray showed his lungs were clear and he tested negative for the flu. They have been giving him anitbiotics by IV and tylenol for his temperature. His temp broke and he is feeling much better. He is painting a wooden car in his hospital room right now.
We are all very tired and will definitely need to catch up on some sleep tonight. We will be taking things one day at a time, so we have no idea how long we could be here. The oncologist that saw him today, Dr. Eames, said that we could be here a week. The problem will be when they start chemo again, it will continue to knock his numbers down.
We are confined to his room until he has been 24 hours w/o fever. And the entire hospital is in lockdown mode b/c of the flu, so we can not have any visitors. We just covet your prayers and thank the Lord that Grant is in such great care.

Happy Halloween

Grant and Trent dressed up as cowboys this year. Grant was riding a horse. They dressed up for a Halloween party that the staff and volunteers at the clinic hosted on Friday. They dressed up to the theme of The Wizard of Oz and it was really cute. It worked out great for us b/c Grant had an appointment on Friday anyway. I use the term "great" lightly. Grant had a really tough day. He has been flirting with a fever since Friday morning, so he just hasn't felt well. He was so excited about his costume and the party, but just couldn't get into it. It was really very sad to watch. He did end up doing one of the crafts, but it was just a hard time. He has 4 shots down and 2 to go. Hopefully, tomorrow will go smoother. He did have a temp of 100.6 when he went to bed. Please pray for his sweet little body to fight and that God will protect him. We know He holds us all in the palm of His hand.

On Halloween, the boys just wore pajamas, Grant's were a cowboy and Trent's a fireman, to hand out candy. They were so excited everytime the doorbell rang. Nana and Grandpa came over. Trent would be sitting on Nana's lap and when the doorbell rang, he would jump up and run to the door shouting "Nana". It was pretty funny. We had a fun night (despite Grant's fever).

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

Psalm 121:5

The Lord Himself watches over you. Psalm 121:5

Again, I was spoken to by reading Grant's children's Bible at bedtime last night. God just reminded me through His Word of what He had done for us all day. We are so thankful for all of you that were lifting Grant up to our Heavenly Father and He has proven Himself faithful again.

We spent 12 hours in the emergency room yesterday. Grant had some kind of a neruological episode about 8:00 in the morning. He couldn't stand or walk. His speach was extremely slurred and labored. He was drooling excessively and he couldn't hold his eyes open. The strangest thing is that he didn't know that anything was wrong. He was trying to go on about his morning normally. I called Rudy and he met me at the ER, which was overflowing with people all wearing masks. Rudy and the boys stayed outside and I braved the ER to get a Dr. Thankfully, when I told them we were a hemotology/oncology (H/O) patient, they all jumped into action. They took us to a private room (with a door). You all know how the ER works. From this point, we saw about a million doctors and nurses and we were there all day. They took blood and urine samples and did a CT scan and MRI. Everything came back completely normal! Praise God! Dr. Heym did come to see us in the ER and did a neurological exam and found no deficiencies. After getting all the test results, the conclusion is that this was a side effect of his chemo. Because the chemo he gets through his spinal tap can also bathe the brain, this kind of thing can happen. Dr. Heym said they have seen this, but they have never seen a kid return to normal activity in such a short time (about 30 min.) Praise God! He will continue to get chemo by spinal tap for the rest of his 3 year treatment period. Dr. Heym said the risk of relapse in the spinal fluid outweighed the risk of this happening again, b/c the effect of the episodes is usually reversable.

Grant was so great all day in that tiny little ER room. We got there about 9:30 a.m. and left at 10:30 p.m. They got the results of the CT scan by about noon. But, there was a miscommunication somewhere b/c we asked if Grant could eat and they brought him a bag of cookies. Then, just as he was finishing them, the Dr. came in to tell us the results of the CT scan and that they were going to need to do the MRI. The MRI was going to require sedation b/c Grant had to lay still for an hour. Well, b/c he had the bag of cookies, we had to wait 6 hours for them to get out of his stomach so he could be sedated. That was the worst news of the day! Grant watched movies, colored, read a book, and played with a beenie baby they brought him. The worst part was him begging for snacks all day. They came to get us about 6:45. He did really great with the sedation, but it is always hard to see your child be drugged and put to sleep. Grant was clutching 2 snacks as he went to sleep that he planned to eat as soon as he woke up!

Rudy and I made lots of promises while we were stuck in the ER. We didn't realize it was going to be soooo late when we left. And Grant wanted us to keep them, like eating pizza. Thankfully, I was able to talk him out of the pizza with a Frosty from Wendy's on the way home. Ice cream for dinner! What an awesome mom!! :)

This was one of the scariest things I have ever witnessed. I don't ever want to have to see my child like that again. I keep replaying it over and over, especially since I had to keep telling it over and over to the doctors and nurses. Grant is a tough little boy and God has him in the palm of His hand. Thanks again to all who were praying us through all of this.

www.playnationoftexas.com

The playground that Grant received as a gift was purchased from PlayNation of Texas. Ron & Linda are the owners and have been overwhelmingly kind to us through the process of ordering it and getting it installed. As a reminder, the playground was given to Grant by InsurMark and the installation was donated by Ron and Linda. Their kindness has extended even further. They have offered to give us 5% of any sale that we refer to them, either by word of mouth or just through our blog. If you know of anyone interested in purchasing a playground, please pass this information along. We are absolutely positive that you will have a wonderful experience working with this amazing couple. You can check out their website at http://www.playnationoftexas.com/ or give them a call at 817.284.8054. Just mention Grant when you contact them.
God just continues to bless us over and over and over!!

Belly Laughing

We've stayed busy this week too. Grant started play therapy on Wednesday and it went really great. He goes to the hospital and plays in a "special" playroom with the therapist. We are able to go to an adjacent playroom and wait for him. Hopefully, this is going to be able to help him express his anger and frustration toward his situation in a more acceptable way. He absolutely loved it. He has asked me everyday if he can go play with Ms. Mandy (pronounced Bindy). He will go once a week. Rudy and I also started a Child-Parent Relationship Training class this week. This is also offered by the Child Life department at Cook Children's hospital. It will coincide with Grant's play therapy, so that we can be consistent in using the same techniques and terminology with him at home. I already had the chance to try some of it yesterday and was shocked when it actually worked. :)
Yesterday, we met a new family that moved in across the street. In our short conversation, we discovered that one of their daughters has a rare blood disease. She is being treated by the same doctors at Cook Children's and goes to the Grapevine clinic regularly. It blows my mind every time I think about it. I have to believe that God already knew they were going to move in there when our house was on the market and not selling. I am so thankful that His ways are higher than our ways!
Grant is feeling really good! We had a particularly fun day yesterday b/c Grant kept getting tickled and laughing uncontrollably. It's contagious!

Don't Miss Out!

Today is the last day to order t-shirts. Please email skcs77@yahoo.com with your sizes today if you want to order. Thanks for all of your support!

A Little Loopy

Grant made a visit to the clinic today. He was scheduled for a spinal tap so as soon as we got there he had to take a "loopy" pill. We had a really early appointment so he was eating his breakfast at the clinic. This made taking the pill pretty easy. He just popped it into his mouth and took a bite of cinnamon roll and a big drink. He did have to get accessed for chemo through his port. But, Rudy was able to go with us today, so he got to be the one to hold him down. Grant is still really fighting this.
Then he saw Dr. Heym who said, "I can't believe how well he is sailing through this!" Wow! God is Good! So...the loopy pill...it makes Grant very silly. We have to wait about an hour after he takes it for it to be the most optimal time to do the procedure. So he is gradually unable to walk straight and really acts drunk. Dr. Heym was sitting next to Grant on the exam table after he had checked him. The entire time Dr. Heym was talking to Rudy and I in the exam room, Grant was nudging him with his elbow and making silly faces. Dr. Heym would stop and tickle him or talk to him, but as soon as he started talking again, Grant started nudging again. :) It's pretty funny to watch him get so silly.
The procedure went pretty well. He did jump and scream right when he got poked, but settled down fairly quickly. Child Life is coming to the Grapevine clinic now and was there today, so we are excited about that. Child Life is the group of people that work at the hospital who are trained to work with and distract the children in these difficult situations. Grant also got two drugs through his port. He doesn't like to be deaccessed either, so he kept telling me we were going to take the noodle home with us today. We didn't. All of his numbers were really good today. We are just trying to avoid sick people, which is getting harder and harder. We have all had our flu shots and will become more isolated as Grant's treatment intensifies in the next few weeks.
My mom has resigned from her position at the pregnancy center so she can help for as long as needed. What a blessing she has been! Thanks mom!
Thank you for all of the continued prayers!

Books of the Bible

Grant is learning the books of the New Testament and doing remarkably well. Tonight he listed them like this: Matthew, Mark, Luke, John, Acts, Romans, 1st & 2nd Corinthians, Galations, Ephesians, Flip Flop (Philipians). He was so funny. He just smiled and started over.
Grant has been struggling a little bit with reacting very angrily to normal situations. We think he is just frustrated with his situation and doesn't know how to express it any other way. He knows that home is a safe place and we will love him no matter what. It's hard to know how to balance the fact that he is sick and in a very difficult situation with the fact that we don't want a monster on our hands when this is all in the past. Please pray for wisdom!

COUNTDOWN TO LIGHT THE NIGHT WALK: 22 DAYS
Make sure you sign up for our team if you are planning to walk to make sure you get a balloon to carry. T-shirt deadline: Sept. 23rd.

ONE WEEK LEFT...

Only 1 week left to order t-shirts! The deadline is Sept. 23rd. If you want one and aren't able to walk, I can get it to you. Just go ahead and get it ordered. We are really looking forward to seeing everyone in their shirts at the walk.

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

Rainy Days

Rudy and I went for a short trip to Austin this last weekend. We didn't really have a lot planned....just going to do what we wanted, when we wanted. I think it must have been one of Austin's rainiest weekends on record. It pretty much rained on us from the time we left until we got back. That's ok, we enjoyed our time anyway. We will just have to plan a return trip to Austin and hope for sunnier days. Of course, the boys had a wonderful weekend at Nana and Grandpa's! They got to play in the rain and thought it was a blast.

Keep Praying

Grant's visit to the clinic yesterday was a little rough. I guess we never know what to expect. But everything the nurses did really bothered Grant. He cried excessively and was very hard to control while they did what they needed to do. He got 2 chemo drugs, one of them an increased dose from last time. He also got his flu shot, which was much more traumatic than Trent's was. =) Overall, they did what they needed to do, but it was a lot of work.
Grant checked out great with the doctor and all of his numbers are holding steady. He will go back next Wed. for a CBC and then the following Monday for more treatment. Thank you for all of your continued prayers!

Healthy Trent

Trent went for his 15 month check-up today. He has gone from the 10th percentile for weight to the 15th and from the 40th percentile for height to the 50th. Still not a big guy, although you wouldn't know it if you just looked at his thighs. Nana came and stayed with Grant while I took Trent to the doctor. When Grant asked where we were going, he got very concerned for Trent. He asked if Trent was going to have to have a poke. He wanted to know if it was going to hurt Trent and if Trent would get a band-aid for his tummy. I told him Trent's pokes were going to be in his legs and he would get band-aids. He did not want it to hurt Trent and asked if he was going to cry. I said just for a little bit, but he was a big boy so he wouldn't cry for very long. And he didn't, just until the nurse started blowing bubbles for him. I thought it was really sweet that Grant was so worried about Trent and really sympathized with him.

We also tried to take advantage of the coolest part of the day and enjoyed breakfast outside this morning. The boys thought that was fun.

Dinosaur Tracks

We've been on the go. Grant's energy level has not seemed to decrease at all. We went hiking at the dinosaur park in Glen Rose on Saturday. When I told him we were going to go to the dinosaur park, he looked a little concerned and then, very calmly, asked me if they were going to chase us and eat us. Once we got that straight, he was excited about going. Grant hiked so hard for about 45 min. and then he hit a wall and couldn't go any farther. Thankfully, we anticipated his decline and were almost back by the time he got tired. He only had to ride on Grandpa's shoulders for a short time. He got a second wind when we made it to see the statues of the dinosaurs. We couldn't believe how well he did. It was a pretty tough hike for a 3 year old and he handled it like a champ. He was loving it too. No complaining, except that he didn't want to hold anyone's hand. Rudy carried Trent in a backpack. We thought he would go to sleep, but he was a trooper too. We all had a really good time.

Reminders

LIGHT THE NIGHT WALK COUNTDOWN: 38 DAYS
Hope to see you there!

The deadline for ordering t-shirts is Sept. 23rd!

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. ;)

Light the Night

Please be sure to check the left margin of the blog site to get new/more information on the Light the Night walk on October 11th. Every walker will carry a lit balloon to "light the night". You can go to our team website to sign up to walk or donate to The Leukemia and Lymphoma Society. There is no registration fee to join the team and walk. We hope to see you there!
http://pages.lightthenight.org/ntx/FtWorth09/GrantsBigAdventure

He made it!

Grant went to the clinic yesterday. He had a much better visit this week. He still is having a really hard time getting his port accessed and deaccessed. But, we manage. I know it is so hard to have to do something you don't like over and over. He just got one drug that he handled fine. Dr. Heym did tell us that Grant will have to have an alternative drug the next time he has to have the shots. The alternative drug will require 6 doses for every 1 of the original drug. I think he only has to have the shots one more time, but it will be difficult. This was the last week of this phase of treatment. Grant made it through some pretty intense treatment better than most. His numbers looked pretty good considering the recent treatments. He will not need any transfusions this week. His ANC will have to be at 750 to start the next phase of treatment on Monday. He was at 700 yesterday, so hopefully, this will not be a problem.
He is having a few side effects from the most recent drug he is getting. It causes him to have pain in his legs, which also keeps him from sleeping well some nights. I think it also causes him to have a bad taste in his mouth, so this makes finding something he will eat even more difficult.

Much Improved

Grant is doing much better. He has not had any more reactions and has been feeling fine. One of the nurses at the clinic called to check on him yesterday which was so nice. They are going to document this as an official allergic reaction to the drug he received through the shots. This just means they will be aware and will probably take some precautionary actions next time he has to have them. I know we will all be a little on edge. But, I fully trust the doctors and nurses to do what is best for Grant. Please pray that he will trust them too. We go back on Monday for another dose of chemo through his port. We will finally get to see Dr. Heym again. Grant is very excited about that. Thank you all for praying us through our tough situation this week!

The Lord is my strength and my song!

It is so good to know that God is in control and holds us in the palm of his hand even when life seems so out of control. Today, God was able to show himself strong when we are weak. We went to the clinic today for, what we thought was going to be, a routine, relatively quick visit to the clinic. He was to get an IV push of chemo and a shot in each leg. Grandma and Trent came with us. Grant was so excited to show Grandma the clinic. We do feel like we live there sometimes.

He did alright with getting his port accessed, but that was just the beginning. He got numbing cream on his legs, so we had to wait for that to work before he got his shots. He did not do well with this. I can't really blame him. I felt like I was taking part in torturing him. He sat on my lap with me hugging him. Each nurse held a leg and gave a shot in each leg. He was screaming and flopping around the whole time. He had tears running down his face and I just felt like I was betraying him. After they were finished, he sat up and was elbowing me and screaming to get down off the bed. We let him down and he ran out of the room into the playroom. This was more than I could handle and I just started crying. The nurses sat with me for a minute until Grant returned wanting mommy to hold him. This kind of extreme change in attitude continued to happen.

The doctors and nurses observe patients for an hour after getting this shot. About 30 min. after Grant's shots, he asked to go to the bathroom. He began screaming again and saying his stomach hurt. It was like it was contracting. This happened off and on for the next 30-40 min. We notified the nurses of his complaints and they were observing him. Finally we went into a treatment room with the doctor but she couldn't even examine him b/c he was so out of control. We was thrashing with pain. By this point, I had pointed out that his face seemed to be swelling. The solution at this point was to give him some benedryl. So they gave him benedryl and fluids for the next hour through his port. This was to treat any allergic reaction and calm him down so the doctor could examine him. He went to sleep in less than 10 min.

I called Rudy and he came to the clinic. Grant slept for about 2 hours and the nurses and doctors were observing him and checking his breathing. He swelled up even more and seemed really uncomfortable. After he woke up, the doctor evaluated him and felt like he could go home. She told us we needed to watch for a few things and call the on call doctor if anything got worse. We left the clinic about 4:45. Grant seemed to be feeling much better. By the time we got home and had some dinner, his swelling had gone down a lot but he had developed a rash. We called the doctor, who just told us to be more aggressive with our benedryl regimen at home and call if anything changes. So where are we now? He went to bed feeling fine. He still had a rash in some areas and his face seemed to be swelling a little again. We are to wake him up at 1 and check his symptoms and give him more benedryl. It's been a traumatic day, but of course, Grant has recovered and is handling it like a champ. I think sometimes we forget how sick Grant is b/c he is doing so well. When things like this happen, it just reminds me that nothing is guaranteed and to be thankful for every good day we have.

Thankfully, Trent was amazing for being stuck at the clinic all day. He even took a nap for about an hour. However, when we got home, he was playing outside and somehow hurt his mouth. He bled for a little while and then bumped it again later and it bled again. It's a little swollen.

The verse God gave me through the chaos today was Exodus 15:2: The Lord is my strength and my song. When I put Grant to bed tonight, he chose a story from his Bible. When we opened the flap to read the Bible verse, it was Exodus 15:2. God is good!!