Doing Great....

We had the clinic to ourselves all morning.....

Watching Mickey on the iPad while recovering from the spinal.....

Grant had his clinic visit yesterday which included a spinal tap. He did great, of course. It's so interesting to look back at his progression through this whole process. Yesterday he was so matter-of-fact. He simply said, "Mom, I don't like back pokes." And then we went in to the clinic and he did everything he needed to do without fuss. His spinal went fine, but the medicine he gets to make him loopy during the procedure has been a little hard on him the last couple of times. It makes his vision blurry, so it makes him a little nauseous. We knew that this time, so we took things a little slower after the procedure. We hung out at the clinic for a little while and had some lunch. He was feeling much better by the time we left and we made it home without incident.

His counts were high (again) and he has grown quite a bit in the the last 1-2 months. So, the chemo went up and so did the steroids. Ouch! He is always pretty emotional and weepy on clinic days. Yesterday was no different. But, we will just have to be prepared for what the increase in steroids may cause. Gotta get ready for lots of hugs! :)

Dr. Heym gave us lots of good news yesterday though. He actually gave us a hard end date of August 20th, 2012. So exciting! And that means only 2 more spinal taps. Grant was almost giddy. There will still be medicine and clinic visits, but the worst will be over. Looking forward to the home stretch. Thank you for your continued prayers!

Picture Update

Baseball, Halloween, & Gymnastics, Oh My! Just thought I would post some pictures of what's been going on.

Yay! No Bandage!

Grant had his regular clinic visit on Monday. I was a little anxious b/c he had battled a low fever over the weekend. He is suffering with congestion and a bad cough. His counts were actually high, too high. But, Dr. Heym did not raise any of his chemos. We will return in 4 weeks for his next visit, which will include a spinal tap, and reevaluate at that time. Dr. Heym seems puzzled that his counts continue to stay high when he is trying to bring them down.

Grant had a great visit and everything went smoothly. It's the little things that really count. Grant's least favorite thing about getting his port accessed is the bandage that they put on it, only to take it off a short time later. It really sticks to some sensitive skin on his chest. Dr. Heym was standing there while we were discussing the best bandage to use for Grant. He stepped in and said not to access him until his chemo was ready and then he could just go without a bandage. He examined him right then and got the chemo ordered. It seems like no big deal, but was so much easier on Grant, even though he has been doing great either way. We just appreciate Dr. Heym so much and the way he knows Grant and even Trent and the rest of our family. They really try to do what is best for Grant in every sense of the word.

Light the Night is here!

If you plan to walk with us, don't forget to sign up on our team's page.
What to expect the night of the Walk:
5:30 Registration & Festivities Begin
6:45 Balloon Lighting Ceremony
7:00 Walk Begins
*Restaraunts will have the Rangers game on! Go Rangers!!!
The walk is located in the West 7th District of Fort Worth on Crockett St. between Currie & Norwood. There are parking garages on the north & south sides of Crockett.
http://click.lls-email.org/?ju=fe2216747c600c78761373&ls=fdf01c787560077472117076&m=fefd15707d6001&l=fe8711797d6c017f76&s=fe5c17717d6402797313&jb=ffcf14&t=
We are looking forward to another great night. Hope you can join us!

Check up

Grant had his regular clinic visit on Monday (sorry for the late update). All of his counts were good....too good. Dr. Heym raised both of his oral chemos. He also got his chemo in his port and started steroids. It was pretty routine and uneventful until it was time for the flu shot. He actually jumped off the bed and ran for the door. It took 4 of us to give him a flu shot! Grant will go back to get his counts checked next Monday since we increased chemos.

On Tuesday, after all this medication, Grant came home talking about getting to change tables at school (for the end of the 6 weeks). He named the other 3 kids at his table. And then, very casually, he told me that one of them had thrown up all over her desk and gone home from school that day. Super! Of all the kids to be at his new table......

God just keeps protecting Grant. Thank you for all your prayers.

Thank you again Cook Children's

Today, Christie, one of the Child Life Specialists at Cook Children's, came to Grant's school to do a presentation with the entire kindergarten class. She talked to them about leukemia and what that means for Grant. She told them some of the things Grant has to do b/c he is trying to keep the leukemia away. She told them that he has to take lots of medicine that might not make him feel well, that he may have to miss school, or he may have to wear a mask to school. She also brought a doll that has a port like Grant's to show them. Most importantly, she told them that Grant did not do anything to get leukemia, he can not give it to them, and he just wants to be treated like everybody else. It is so wonderful to have a resource like this to advocate for your child. I'm crying as I write this b/c I am so thankful that Grant can go to school and be treated like everyone else, despite all he goes through behind the scenes. I also want to thank his teachers and administrators for being so cooperative in doing everything they can to help Grant (and me).

p.s. Grant told me when I picked him up from school that about 6 of his friends asked to touch his port. He let them touch it on top of his shirt. It's pretty cool to be the only guy with a port. :)

Barn Dance 2011

What a fun night! We had our 2nd annual Barn Dance to kick off the Leukemia and Lymphoma Society's Light the Night walk. It was a great night of celebrating Grant, having fun with friends and family and raising money to find cures so other families do not have to fight cancer. Don't forget to register if you would like to join us for the walk on Oct. 23rd in Fort Worth. http://pages.lightthenight.org/ntxok/FtWorth11/GrantsBigAdventure

A little spinal tap, some chemo, some steroids....

Grant had his clinic visit yesterday, which included a spinal tap this month. I have never seen such grit and determination on his face before. We asked him if he wanted to watch a movie and he said he didn't need one. You could just hear in his voice that he was going to prove that he could just sit there and do it. He did amazing! When Dr. Heym poked him, he jumped a little and said "ow, ow, ow". But I helped him grab the edge of the pillow and squeeze and he just grit his teeth and laid there. Once the actual pain was over, he laid his head on the pillow and silent tears rolled down his face. He did not want anyone to see him. He wiped his eyes and before they were finished, he was laughing and talking with everyone. My description of the moments in that room do not do justice to the amazing kid that Grant is! I'm so proud of him for so many reasons.

After the great job he did, he was ready to celebrate with our habitual pizza at Sam's and dad was even going to join us. But, he started feeling bad before we even got there. He would not let us go home. He said he was hungry. Well, that didn't work out so well. He battled some nausea and he ate and drank carefully for the rest of the day.

His counts are good, so we are increasing his chemo a little more this month, but still not to the full strength he was taking.

Please pray for Grant this week as this is his first full week of school on steroids. I think the teacher got lots of hugs today. For some reason, they make him emotional and he just wants to hug. But, as long as there were no tears, we are good.

Thanks for keeping up with our family and keeping us in your prayers!

Light the Night 2011

It's Light the Night time again. Grant always looks forward to his "leukemia party". Please join us as we raise money to find cures for those battling blood cancers. The walk is in Fort Worth on Oct. 23rd. You can get more information by following the link below. This is also where you will need to go to register to walk or to give a donation to the Leukemia and Lymphoma Society. Thank you for your support! Hope to see you there!

http://pages.lightthenight.org/ntxok/FtWorth11/GrantsBigAdventure

Grant's First Day of School

Grant had a visit to the clinic yesterday to check his counts. I believe the goal is to increase his chemo back up to the levels they were at before we had to cut them way back. His counts were right where they needed to be, so we did not make any changes to his medication. I was glad they didn't increase it the day before he went into a school full of germy kids.

Grant was so excited to go to school this morning. He just marched right in his classroom and really didn't understand why Rudy and I were coming in with him. It was time for school! I did pretty well and never actually cried, just had eyes that were a little teary.

I had a meeting with the staff a couple weeks ago at the school and that put my mind much more at ease. I know faces of people I can get in touch with if need be. I met with the principal, 2 nurses, counselor, and Grant's teacher. They were all so wonderful, helpful, and understanding. I am excited for the school year b/c Grant is so excited. Please continue to pray that he is able to stay healthy.

Answers Please

Grant had his regular clinic visit today. He got vincristine in his port and started his steroids tonight. His counts had come up quite a bit, but Dr. Heym still did not increase his at-home chemo all the way back up. He's being cautious and we go back in 2 weeks to check counts again. If his counts are still up, he will go back to taking the full doses he was before his counts dropped. That will be the day before school starts. Yes, I'm nervous.

Grant has also been battling a rash off and on for the last 4 months. Dr. Heym has not had many answers, but today Rudy instructed me not to leave without one, so we didn't. :) Dr. Heym had some guesses, but he wasn't willing to give me the sure answer I was looking for....and a solution. So, he referred us to a dermatologist, who got us in today. (B/c I couldn't go home without an answer and I think Dr. Heym is a little scared of Rudy.) :) After being at the dermatologist's office for almost 2 hours, they diagnosed something. I still don't get it and they sent home pages of information for us to read. Basically, it is something that adults usually get, but it has shown up (VERY RARELY) in kids that are being treated for ALL. Also, it is usually on the face and scalp, but can show up (VERY RARELY) on the extremities. Grant's rash has spread to his stomach, arm and leg. It seems that with Grant we can just skip over the "common side effects" column i.e. nausea or constipation. Those are not his problems. We can just jump right to the VERY RARE column i.e. crazy rash and stroke-like episode. We are now applying a cream to his whole body before bed that he has to wash off each morning. We do this for 5 days and then 2-3 times a week until we see the dermatologist again in 4 weeks. Please pray that this works and Grant does not have to deal with this rash any longer.

Grant was a champ at both Dr.'s offices today. He is a real trooper. We capped off the day with t-ball tryouts this evening in 107 degree heat. It was a great ending to an otherwise so-so day.

A Little Better

Grant had his clinic visit on Monday to recheck his blood counts. They came up...a little. They are supposed to be at 750 for him to restart his chemo. His fell short. However, Dr. Heym decided to go ahead and restart his oral chemos at half doses. He will go back for his regular visit in 2 weeks.

He has been wearing a mask in public places. He told me the other day, "I wish I could start taking my chemo again cause I'm tired of wearing this mask." It's a sad day when your kid wants to take chemo. :)

Not So Routine

Grant had his routine clinic visit this morning. His blood counts came back very low, so low that he can not continue treatment until they come back up. Dr. Heym took him off his oral chemos for the next 2 weeks. He did get his vincristine through his port today and will start his 5 days of steroids tonight. The steroids should boost his counts unless there is something else going on that is lowering them.
He has had a cough for the last 2 weeks. He has had trouble with coughs throughout this maintenance phase of treatment. Dr. Heym put him on allergy medication, which seemed to help for a while. However, he can not figure out why it keeps coming back. Grant sounds terrible, but every time we have him checked, they tell us his lungs sound clear. Even the ER doctor last time he was admitted for pneumonia told us that his lungs sounded clear. Obviously, they weren't. All that to say, Dr. Heym also referred us to a pulmonologist today just to have somebody more specialized see if they can find anything. Grant should have an appointment sometime in the next couple of weeks.
Also, as many of you have noticed, he has been breaking out in a rash on his face regularly. It comes and goes, but we can't narrow down what is causing it. Dr. Heym said today that he believes it is a side effect of one of the chemos he is taking. If so, hopefully it will fully clear up over the next 2 weeks while he is off his medication.
Please be in prayer for Grant that all of this turns out to just be a bump in the road and we can continue treatment as usual. Also, please pray for Rudy & I to have wisdom as we care for Grant. We will keep you posted....

Camp Sanguinity 2011

Today was a big day for Grant..... and me. Grant went to an all day camp sponsored by Cook Children's. They took about 20 4&5 year olds to a youth camp for the day. The hospital sponsored a week long camp for older kids, but the preschoolers get to go for a day. I dropped him off at the hospital where he boarded an enormous coach bus. Then, he spent the day boating, swimming, singing, crafting and he even touched a snake! He looked exhausted when he got off that bus at 5:00.

My little guy is growing up! He was so excited to go this morning. But, when we got there, he was a little hesitant to leave. I wanted to cry my eyes out, but then he would have been worried about me. :) And listening to him talk about his day made me realize even more that he is just like me - good and bad. :) The way he explained his experiences of the day could have been me talking 25 years ago. I'm so glad that we both overcame our fears today and Grant had a great time at camp!

The Amazing Grant

Grant wanted me to take pictures b/c he wanted to see what was going on. I hope it gives you a better idea of what he's going through.

Grant had his regular clinic visit on Monday. He did the most wonderful job. It was so easy, well, for everyone except him probably. It even started at home with putting on cream. I told him it was time and he walked right over to me to get it on. All he said was I don't like cream. Then off to the clinic, no fussing. He was the first appointment, so they were ready for us. He got all of his vitals taken and then headed to the playroom to eat his breakfast. We didn't even make it there b/c they were waiting at the procedure room for him, ready to access his port. Still no fussing, he just went right in. (I need to mention here that Grant does not do change well. So, his plan was to go eat his breakfast after we got there. When that didn't happen, things could have gotten ugly.) He sat up on my lap. I started to hold his hands like I normally do so that he won't jerk and hit the needle or the nurses arm and he shook me off. I was a little nervous, but he just put his hands down by his sides, determined to do it on his own. The nurse accessed him without a peep or flinch. Awesome! But, it gets better....

When it was time for his procedure (back poke), he walked into the room, climbed up on the bed, sat criss cross and asked for the pillow that he needed to lean over, all with a smile on his face. We propped up the ipad and played Cars and he just laid on the pillow the whole time. Dr. Heym always tells him when the poke is coming. Grant just squinted his eyes for a second and went back to watching his movie. Later I told him I was so proud of him b/c all he did was close his eyes for a second. He said, "how'd you see that?" He was so determined to be rock solid!

I know God was answering a lot of prayers that morning. And I'm so proud of the young man Grant is becoming. He is so strong and trusts in a mighty God for his help.

All of his counts were good and his chemo will all stay the same for this round. He got chemo in his spine and port, and he started his steroids. So far, he's done a great job this week. His body is working hard, so he gets tired easily. And he is very emotional. There is a lot of crying over little things and he wants to give A LOT of hugs. All that being said, I think he's handling it well.

Thank you for continuing to keep up with our family and we appreciate your prayers.

Thank you Lighthouse!

We just returned from another wonderful week at the beach with Lighthouse Family Retreat. This organization has been such an amazing blessing to our family. We get to spend the week being served and taken care of while spending time with other families that are going through childhood cancer. We are so thankful for this time together as a family. We are also so thankful for this partner family (above) that cared for our family for the week and all of the volunteers that serve so selflessly. We all had such a great time!

Today we got to celebrate Trent's 3rd birthday! Happy Birthday Trent! God has given us a huge blessing in you. He created you to fit perfectly within our family. You are the sunshine that brightens a day and you always bring smiles to our faces. Love you!

Grant has a clinic appointment tomorrow at 8:00 a.m. He will get a spinal tap, chemo in his port and start steroids. We appreciate your prayers as Grant continues to fight this battle.

That's not fair!

Tonight, while Grant was getting ready for bed, he looks at me and says, "Mom, it's not fair that I have to have leukemia and Trent doesn't." He had just taken about 11 pills and Trent went running by the bathroom laughing and playing with Rudy. He definitely realizes that not everyone has to do the yucky things he does. So, we talked about it and I told him he was right, it is not fair. It's a BIG "NOT FAIR". But, he is going to be so awesome b/c he can deal with all the things that are not fair in life. Then, he talked to Rudy about it and Rudy told him how tough this was making him. And that he was so tough for doing all the things he has to do and fighting leukemia. It broke our hearts to hear him talk like that. But, one thing he was sure of, he did NOT want Trent to have leukemia. Praying for a very special friendship between Grant & Trent.

Big Brave Boy

Today was a doctor day. First, Grant had a well visit with his pediatrician. Even though he cannot receive immunizations while he is on treatment, the oncologist suggested that we continue that relationship. All went well and he is perfectly "normal".
Then, we went to the clinic for his regular visit. Grant did an amazing job today. Not only did he not cry, he didn't even make a peep or flinch when he got his poke. When it was time to take it out, it was more of the same. He seemed so big and grown up today. It must be a 5 year old thing. I was so proud of him.
His counts finally came down this month, but they missed the "ideal" range. His ANC was 690. The target range is 750-1500, but it only has to be above 500 to continue treatment. No changes were made to his medications. He begins his 5 days of steroids this evening. He started with a cough on Saturday morning and it has gotten a little worse. Dr. Heym said he sounded clear when he listened to him breathe. Hopefully, he can fight off whatever little bug he may have.
We went to Kindergarten Round-up tonight. Grant is so excited about starting school. Mom is having a hard time for many reasons. Tonight we left b/c I was worried about him being around all those kids with low counts. Ahhh!
Thank you for continuing to keep up with our family. And, as always, we are so grateful for all of our prayer warriors. God answered prayer today!

Happy 5th Birthday Grant!

Yes, that's right, #5. Can you believe it's been 2 years since we started all of this? We had a great time celebrating Grant today. Birthdays have kinda become a big deal, especially for Grant, so it's not limited to one day. :) He was so excited to turn 5. He asked me about 3 times this morning if he looked taller.

I don't know if you caught the baseball theme?!? We made baseball cookies that Grant took to his class at school today. They were a hit...pun intended. Then, he had a baseball game, which they won, and gave out baseball cookies to his team. And then we topped it all off with a pizza party after the game. And this is just the beginning. We have more celebrating to do. :)

Of course I do a lot of reflecting in April and I will write more about that at another time. But, it's always so great to see Grant enjoying "normal" things in life. We have a very special little boy and God has been so good! Thank you all for your continued prayers! Happy Birthday Buddy!

Easter

Just wanted to post some pictures of Easter. We had a really fun time with family. The picture of our family was taken at our new church, Movement Church. God has led us to help with a church plant and Easter Sunday was our first Sunday morning worship service. We are having a lot of fun. God is Good!

Butterflies & Baseball

We got to have a really special day today. Grant participated in a fundraiser for the organization that sent us to Disney, a Wish With Wings. The theme was Butterflies & Baseball and Nolan Ryan was the chair for the event. Grant got to wear his personalized jersey and walk the runway. But, most importantly, he got to meet Nolan Ryan and get lots of autographs. There were 10 kids that participated and they are so wonderful to each one. Grant really had a great time. But I'm not sure who enjoyed it more....Grant or Dad? ;) http://www.awishwithwings.org/

More Meds

Grant had his regular clinic visit on Monday. On the way to school that morning he told me that he wanted me to tell dad that he did really good at clinic b/c he was going to laugh when he got his poke. I responded that I would fall over if he laughed when he got his poke. No need to worry....I did not have to fall over. He screamed and squirmed and made it miserable. But, when we took the "noodle" out, he did laugh. All this tells me is that he has full control and is choosing how he wants to behave. Anyway, we accomplished what we needed to accomplish. God is good! Grant's counts were still elevated above the optimum levels, so he got another increase in his chemo. He is taking A LOT of medication! Dr. Heym also increased his steroids. Grant has seemed to handle the increase pretty well. The only real struggle was at his baseball game. He got thrown out at first twice and that was just too much. The heartbreak coupled with steroids was not a good combination. He just cried...twice. So, of course, I cried. As normal as Rudy and I would like it to be that he is playing baseball, it's not normal. Did I say he is taking A LOT of meds? And then I reverted back to feelings I had at the beginning of wanting to explain him, not so much to the parents, but especially his teammates. I didn't want them to think Grant was a crybaby. They were so wonderful to him though, patting him on the back and telling him to get it next time. And God has given us some wonderful new friends whose son battled cancer. He is on Grant's team. It's so great to have someone living life with you that understands your feelings. God is good! Grant has had a few things happening that may or may not be side effects. We would just like you to pray for him. He has been getting some spots on his face that come and go. They come up in the same spots each time. Dr. Heym has looked at him and pictures of him when they are worse and does not seem concerned. I would just prefer he not have spots on his face! He is also having some leg pain, much like he did at the beginning of treatment. It usually happens in the car and is a pain behind his knees. Lastly, he has been waking up in the night frantic. He is screaming and sometimes running in our room. He goes to the bathroom and we have a fairly lengthy conversation (for 1 a.m.). He has described nightmares to me. The weirdest part is that he does not remember ANY of it in the morning. Nothing. I feel like I am constantly battling living in a state of fear. I know God is in control and holding each one of us in the palm of his hand. God is good!

DISNEY

We just returned from an amazing trip to Disney World in Florida. A wonderful organization, a Wish With Wings, sent Grant and our family on a wish trip. I could write a really long time telling you about all the fun we had, but I will try to hit some highlights and post lots of pictures. We flew out last Monday and returned Sunday evening. We were picked up at our house and taken to the airport in a limo. The boys were amazed! In Florida, we stayed at Give Kids the World Village, and the name says it all. They provided a 2 bedroom 2 bath villa and all of our meals. They had all kinds of things on the grounds for the kids (playground that was a life-sized Candy Land game, Carousel, Putt-putt, Arcade, heated pools, train). They also had an ice cream parlor that was open all day (all you can eat). That was just Give Kids the World. We also got tickets to all of the parks. We spent 3 days at the Disney parks and 2 days at the Universal parks. Grant & Trent loved roller coasters! It was a really great trip and we all came back exhausted. When we got home, it was chilly and I said I wish I was back in Florida. Grant said, "Me too. I want to stay there until Jesus comes back to get me!" :) Thanks to a Wish With Wings and Give Kids the World!
We did hit the ground running when we got home. Grant had his clinic appointment Monday morning (see previous post). Then there was a fire in our backyard Monday afternoon. No one was hurt, but it burned our back fence and our shed with all of our lawn equipment. That was exciting! Tuesday morning Grant was complaining of sporadic headaches. This can be a side effect from the spinal tap. But, please pray that it is not the beginning of another stroke-like episode. He has not had any headaches today. Thanks for keeping up with us!

It's Christmas every Thursday at GKTW Village. They had a parade, it "snowed" and the kids got gifts from Santa.

This tree snored!

This was our villa.