Grant's Big Adventure

Aww Shucks!

2012-02-18T08:58:00.004-06:00

My how things have changed. He was perfectly content on his ipod and watching ESPN. The nurse actually commented that we were making him watch that channel and he could watch cartoons if he wanted. Little did she know....that was his request.

Grant started getting a little congested and coughing on Thursday. By Friday morning, he woke up saying he did not feel well. Of course, he wasn't going to let that keep him from school. (Have I mentioned that he loves school!) But, the first thing he said to me when I picked him up from school yesterday was "I had a hard day." When I asked why, he said that he didn't feel good and his head hurt all day. We went home and he curled up on the couch. As we sat there, he temperature just started to rise. The magic number for calling the doctor is 101. He was at 100.9 for most of the evening. It finally crossed that barrier. We called the doctor and headed to the ER about 10:30. Grant was very sad about having to go.

They drew labs and also tested for the flu. The flu test came back negative, but his counts were extremely low. His white blood count was .5 and his ANC was 10. They ordered him an IV antibiotic and admitted him to the hospital. They also gave him some tylenol for the fever. He handled everything like a champ and was in much better spirits about having to be there. He was actually very impatient about waiting for the doctor to tell us whether we could go home or would have to stay. When the doctor told him he had to stay, he actually said "yeessss, I want waffle sticks for breakfast." Who likes hospital food? Oh well, at least he didn't cry over having to stay. Give the kid some waffle sticks!

Hopefully, we will see the oncologist today. His counts will have to come up and show they are on a path to recovery before he can go home. They will hold chemo until his ANC reaches 750. Thanks for all the prayers and we will try to keep you posted.

More of the same....

2012-02-07T07:57:00.002-06:00

Grant is doing so well with treatment. He had his regular monthly clinic visit yesterday. The biggest problem we are having is keeping his counts DOWN. The treatment is calculated to keep his counts suppressed but not bottomed out. This range is somewhere between 750-1500. Grant's counts have been consistently over 2000 for the last several months. We have increased chemo every month in an attempt to hit that target range. So, it was increased again this month. Apparently, he is just able to process and digest the medication well. Just to give you an idea, he is now taking 9 pills of the chemo he takes once a week and that is just one of the medications he takes. But, when he had to take them last night (all at the same time), and I commented on how many it was, he said, "They don't even cover my tongue Mom." What a champ!

Also, I have to praise him for how brave he was yesterday. There was a new nurse at the clinic, which makes me nervous. And, Grant has to sit on the bed by himself now b/c he is too big for my lap, so we sit beside each other. The nurse counted to 3 and went to poke him and missed his port. Grant was sitting so still and patient. She had to take it out and poke him again. Then, she kept pushing really hard for some reason. Grant very calmly asked, "Why are you pushing so much?" I thought it was a very good question. I don't have a lot of patience for people hurting my child, so I was trying not to look. Grant handled it much better than I wanted to. When I was praying for him last night, I thanked God for sitting on that bed with us and helping Grant to be brave. Grant verbally agreed with a "yeah, yeah" during my prayer and has commented on it several times since. He trusts his God!

The only side effect he is experiencing is some stomach cramping periodically. His least favorite thing is having to miss school for appointments. School gets out at 2:45 and I picked him up at 2:15 yesterday and he was upset. We go back in 4 weeks....

Doing Great....

2011-12-06T09:56:00.003-06:00

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

2011-11-11T09:13:00.004-06:00

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

Yay! No Bandage!

2011-11-09T09:01:00.002-06:00

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!

2011-10-20T14:39:00.002-05:00

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

2011-10-14T19:57:00.002-05:00

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

2011-10-04T15:37:00.004-05:00

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

2011-09-27T16:43:00.002-05:00

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....

2011-09-13T20:33:00.000-05:00

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

2011-09-03T09:07:00.002-05:00

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

2011-08-23T11:36:00.003-05:00

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

2011-08-08T20:44:00.003-05:00

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

2011-07-27T10:27:00.002-05:00

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

2011-07-11T19:41:00.002-05:00

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

2011-07-07T20:51:00.004-05:00

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

2011-06-08T20:35:00.003-05:00

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!

2011-06-05T20:43:00.003-05:00

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!

2011-05-16T21:08:00.002-05:00

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

2011-05-02T20:19:00.003-05:00

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!

2011-04-28T22:13:00.002-05:00

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

2011-04-26T06:59:00.002-05:00

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

2011-04-21T16:14:00.003-05:00

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

2011-04-07T20:23:00.003-05:00

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

2011-03-09T15:35:00.009-06:00

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.

"They gave me something"

2011-03-07T21:12:00.001-06:00

That's what Grant said today at the clinic when he couldn't walk straight. And yes we did! It was the same medicine he had been taking orally to make him loopy, but this time it was a little stronger by IV. It worked much better. He just said 'ow' when Dr. Heym did his back poke (spinal tap) and that was it. He even laughed when the nurse took the bandage off his port. That has never happened. Yay drugs!
His counts were still too high today. So, his chemo is going up again. This is the 3rd month in a row that we have increased chemos. He has had some tummy issues this evening and has been very weepy. He didn't start his steroids until tonight, so we may have a very teary week ahead.

Handsome Boys

2011-02-14T20:35:00.002-06:00

Just wanted to share our handsome boys.....

They just got much-needed haircuts. It's really shown how thin Grant's is getting. Hopefully, it won't all fall out. He randomly told me today that he likes it with no hair. I don't know if he's just mentally preparing himself for that or what.

Please pray that Grant will stay healthy. He's had a couple of nose bleeds in the last 2 days. Anything abnormal causes me to worry. We are going to Disney soon for his Wish trip and we would much rather be there than the hospital. :)

Steroids & Snow Days

2011-02-05T13:52:00.002-06:00

Wow, what a combination. :) Thankfully, Grant made his scheduled appointment on Monday before the bad weather got here. It was a relatively good visit. We were in and out in an hour and that's always good. The nurses ask me some routine questions when we are there. I give pretty routine answers. But on Monday, they kept asking me if he had gotten all of his doses of medicine or if he had missed some. After about the 3rd time, I suspected something was wrong. So when we got in the exam room and Dr. Heym asked me again, I just asked him what was wrong. He said that Grant's counts were staying very elevated. He did not have any kind of infection and they were trying to rule out reasons this may be happening. The end result for Grant: More Chemo. They had already increased one of them a couple months ago and this time they increased a different one. He will also have to increase his steroid dose next time, but Dr. Heym said he would spare us two increases in one visit. Thank goodness, since we've been stuck in the house all week.

Grant has actually done really well and we've had some fun in the snow. There are definitely signs that things have been harder on him this week. And moms like to worry, so that's what I do. ;) Overall, we are excited to be finished with the steroids today and have temperatures above freezing.

We did venture out to the FW Stock Show on Wed. b/c we had tickets to the rodeo. It was cold! The boys loved it and have been riding bucking horses at home. Hope you all have stayed warm.

Feeling Good

2011-01-18T19:25:00.003-06:00

Grant has been feeling good and doing all the things he likes to do. We made it out to the FW Stock Show & Rodeo parade on Saturday. It was pretty cold, but the boys always have a good time. And today was Wild & Wacky day at school for Grant. He had a little trouble thinking outside the box at first, but then he really got on board with it. Enjoy the pics.

Merry Christmas, Happy New Year, Another Clinic Visit

2011-01-04T20:39:00.003-06:00

Well, you can see time has gotten away from me. We enjoyed spending the holidays with family and friends. We made a trip to OKC, went bowling, saw Yogi Bear, made Jesus a birthday cake, enjoyed gifts (of course) and ate...a lot... to name a few things we were able to do. We are blessed! We hope you all had a wonderful Christmas and start to your New Year.

Grant had a clinic visit yesterday. He made a big fuss about things this time too. I'm not sure why we seem to have gone backward in this process. But, the deal was that he could scream and cry, but he had to sit still for the nurses to do what they needed to do. And he did do that....screamed and cried, but sat still. He got the chemo in his port and started up his steroids yesterday. We just never know what to expect from the steroids. We know it's going to change his behavior. We just don't know what it's going to change it to from day to day.

He doesn't let any of it keep him down though. I'm so proud of him. Love you buddy!

Annual Christmas Cookies

2010-12-16T21:30:00.003-06:00

We did some serious baking yesterday. The boys love decorating their cookies. And of course, they love eating them.

Santa's Helpers

2010-12-13T21:19:00.004-06:00

Funny shirts my mom got for the boys. Grant could not understand why his shirt had Trent's name on it. :)

Grant was so excited to deliver banana bread to the staff at the clinic today. They were all so sweet. They do so much and take such good care of Grant. We could never do enough to express our appreciation. Unfortunately, Dr. Heym was not there today. But, Grant wanted to leave him two loaves.

Last week, Grant's counts were really high again. So, we have to increase his chemo again. The one that we increase he takes on Monday nights. He is going from 5 pills to 6 pills. Last time we did this, he ended up in the hospital. Tonight was his first new dose. Please pray that his body can handle the increase and use it the way it needs to.

Good Steroid Week

2010-12-12T20:45:00.004-06:00

We've made it through the week of steroids. It had it's rough moments. But, it had some really great moments too. Amazingly, Grant got his first 'silver star' at school this week. They have a behavior chart and they are supposed to stay on green. If they go "above and beyond" then they get a silver star. Grant had been wanting one so bad ever since school started. We had even brainstormed ideas at home of things he might do to get one. But, he got this one all on his own. It was the very first thing he told me when I picked him up. Then, he wanted me to tell everyone that I talked to on the phone and he was so excited to tell his dad. He got his folder out of his backpack and just sat and stared at it all the way home. It was so exciting!

We also had 2 Christmas programs this week. Trent's was Thursday and Grant's was Friday. They both did wonderful, of course! They each sang 4 or 5 songs with their classes. Trent can sing Jingle Bells like a champ. And Grant did much better on stage than I expected. Of course he is a "rule follower" and wanted to do exactly what the music director told him to. They were lots of fun and boys had a great time.

We Survived

2010-12-06T21:34:00.002-06:00

I picked Grant up from school a few minutes early to get to the clinic. From the moment I walked in to get him, his anxiety grew. We put cream on at school and headed to the clinic. Grant was quiet the whole way there. He did well with accessing his port. But, the anxiety grew even more when we had to put cream on his back. He recovered quickly though. He had taken his loopy medicine, so his exam with Dr. Heym went pretty smoothly. Then, we went straight to the procedure room. Things really escalated at that point. Dr. Heym didn't even wait for the nurses to get everything set up. He just came in and got started, trying to prevent any extra anxiety for Grant. Grant did calm down for a little while when Dr. Heym was showing him what he was doing. But, when it was time to get the poke, Grant just started screaming. There was terror in his eyes and that is one of the most awful things I have ever seen. I feel so helpless. I sat directly in front of him with our foreheads touching trying to sooth him. Again, Grant recovered fairly quickly after the procedure was over. We are going to be exploring other options for sedation for the future. Please pray that Rudy and I would have wisdom to do what is best for Grant.
Grant also got more chemo in his port and started steroids today. His counts were still way up, so his at-home oral chemo was increased again.
The evening at home had it's ups and downs. He was very emotional, which is pretty usual. He was really groggy and lethargic when we got home. He ate some dinner, and some more dinner, and some more dinner and that pepped him up. And, of course, he watched some football with his dad. But, when it was time to go to bed, he got very weepy. Bedtime was very hard. (For those that don't know, Rudy had foot surgery about 2 weeks ago. He's pretty much bedridden when he is at home.) Grant told us tonight that he needed to stay in our bed and eat breakfast there b/c his back was hurt. He is so perceptive.
Trent has been so sweet. He wants to take care of Daddy and Grant. I am tired, not so much physically, but emotional and mentally. Please continue to keep our family in your prayers. We know God is still holding us in the palm of his hand.

Shout for joy to the Lord, all the earth.
Worship the Lord with gladness; come
before him with joyful songs.
Know that the Lord is God. It is he who
made us, and we are his; we are his people,
the sheep of his pasture.
Enter his gates with thanksgiving and his
courts with praise; give thanks to him
and praise his name.
For the Lord is good and his love endures
forever; his faithfulness continues through
all generations.
Psalm 100

So Sorry

2010-12-03T22:41:00.002-06:00

Wow! It's been too long! It's never b/c I have a lack of things to say :), just no time to share it. I will be updating with all of the things we have been doing soon. Tonight, I just want to ask for your prayers. Grant has his regularly scheduled clinic visit on Monday and it is the one with a back poke. He knows this and has been very anxious this week. He has been counting down the days as we get closer to the dreaded Monday. He has also directed some of his anxiety and displeasure of back pokes toward Dr. Heym. (He is the one who does them.) Anyway, we've talked about why he has to get them and that Dr. Heym is taking very good care of him. We'd just appreciate your prayers as this day approaches. His appointment is at 2:30 on Monday. Please pray that he can have a great day at school that day, keeping his mind off the procedure. Please pray that the procedure will go quickly and easily. Please pray that I will be sensitive to Grant's frustrations over his situation and respond in a supportive way. We appreciate you and your prayers.

Back on Track

2010-11-01T20:51:00.003-05:00

Grant went for his follow up visit to the clinic today. His ANC has finally recovered to 1180. So, he started back on all of his at-home chemo today. However, Dr. Heym did lower the one he raised before Grant got sick back down to the original amount. Grant will go back for a regularly scheduled visit next Monday.

The clinic had a little Halloween party for the kids today. So, they wore their costumes. Trent was a chicken and Grant....Dr. Heym. It was great! The minute we walked in everyone knew Grant was Dr. Heym. He thought it was really funny that we sprayed his hair black. Dr. Heym was pretty impressed at how accurate we were. He asked to take a picture with him, but Grant would not cooperate. This is just a picture of the boys at home before we went.

They both will get to go to school tomorrow and we are ALL excited about that. Grant has really missed school.

Detoxing

2010-10-27T16:46:00.003-05:00

Things are going pretty well. Grant has been feeling good for the most part. His biggest problem is adjusting to being at home and playing by the rules. We really had a day of detoxing on Monday; Grant from the hospital (nurses), Trent from Nana. :) Yesterday, Grant was pretty sad that he did not get to go to school when we dropped off Trent. On the way to pick him up, he decided he wanted to know what his job for this week would have been. So, his teacher came to the window to give him a rundown of the week and things we could do at home. She has been so wonderful to send his schoolwork home with Trent. He misses school and all his friends. He also realized that he was missing soccer practice. Another bummer! Just hoping counts are on the rise and he can stay well.

We're Home!

2010-10-24T14:47:00.003-05:00

Grant's ANC was 140 today! Yahoo! He was actually very excited about coming home. Trent and I went and picked up Rudy and Grant at the hospital this morning. Grant and Trent held hands in the car on the way home. It was very sweet. As soon as we got home, they jumped out of the car and on to their bikes, scooters and tractors. I think Grant was pretty excited to play outside. We will be stuck at home for at least a week and probably longer until his counts really recover. He goes to the clinic next Monday (11/1) for a CBC. We appreciate all of your thoughts and prayers!

Staying Again

2010-10-23T14:07:00.003-05:00

Grant's ANC is 70. He will be in the hospital at least one more day. It still needs to come up higher. Sadly, Grant is perfectly happy here. He has discovered the Wii in the playroom and that's all he wants to do. He also gets great pleasure out of ordering his meals everyday from the menu and leaving it outside his room. I guess it doesn't take much for a 4 year old. Please pray his counts up!

Still Here

2010-10-22T09:40:00.002-05:00

Grant's ANC is 40. So, we get to stay here. :) Dr. Heym says that he sounds/looks good and that all his other numbers have come up. Basically, that one is just lagging behind. He did not seem concerned, but we are just going to have to wait for it to come up. The risk being that if we go home and he can't fight something off, then we will be right back up here starting all over. So we wait! He said if Grant's ANC could get over 100 tomorrow, then he would get us out of here. He is not on-call this weekend, but said he would communicate with the on-call doctors. One piece of good news is that Grant's fever is staying normal. This means that we are allowed out of the hospital room and can go walk around the floor and go to the playroom. That helps a lot. We were going stir crazy in this room.
When Grant gets to go home, he will be isolated. He will not be able to do the things he was doing before he got sick (preschool, soccer) until his counts completely recover. His chemo will be held until his ANC is back over 500.

ANC is up

2010-10-21T11:39:00.002-05:00

Grant's ANC finally made a move in the right direction, up to 69. Dr. Heym, very optimistically, said he hopes to get him out of here by tomorrow afternoon. He has to have no more fever and his ANC has to go up again tomorrow. Grant was very disappointed when I told him this morning that his counts had come up. He wants to stay here and hopes they go back down. It's not too hard to believe. There are very few rules here. He watch tv and plays internet games all day. He gets everybody's total attention. People bring him food in his bed. What's not to like?
Thanks for praying with us!

It's back!

2010-10-20T14:50:00.003-05:00

Well, Grant's fever is back. It came back up just before Dr. Heym came to see him this afternoon. So they have taken another blood culture and given more tylenol. Dr. Heym was concerned with how high his fever got yesterday and the fact that it keeps coming back. The plan is to wait one more day. If his fever continues, he will have to have CT scans tomorrow to look for fungal infection, which will have to be treated with infection-specific medication. At this point, Dr. Heym said that he is not concerned that the leukemia is back b/c all of his counts are slightly improving except the ANC so it seems that his bone marrow is working. Please pray for no fever!

Yay for Sleep!

2010-10-20T12:20:00.005-05:00

Grant had a great night last night. Of course we could not go to sleep until the last out had been made in the Rangers game. But, he slept all night with no trouble. His coughing was much less and he did not have any more codeine. They are giving him IV fluids so he only woke up to go to the bathroom. We all got more sleep, however, we are not any closer to going home. His ANC is still a big fat zero today! We are still waiting to see Dr. Heym and find out if we are just staying the course or changing the plan of action. They have already been holding all of his chemo, so he hasn't had any since Saturday night. More waiting.....

More Fever

2010-10-19T18:11:00.002-05:00

Grant and I slept all afternoon so that was great. I tried to wake him up about 4:30 to go to a party in the playroom. When I sat him up, I could tell that he was extremely warm. I went to get a nurse and his temp had spiked back up to 103.6. So, no fall party. But, they were so sweet and sent crafts and pumpkins and a bag of treats and games and food to his room. He was perfectly happy! He and daddy are playing Jumpin' Monkeys and waiting for the Ranger game to start. He just got his first dose of the codeine so he will probably get a little drowsy (which is just fine). My mom says Trent is acting like he is feeling fine. Thank you for your continued prayers!

Doctor Report

2010-10-19T12:26:00.003-05:00

Dr. Heym came in to see Grant. Of course, he looked fine and was playing computer games, so he thought I was telling stories about our nights. :) He did prescribe him some codeine for his cough. He did not want him coughing so much that he was vomiting. And that should also help clear up his blood shot eyes, which he believes was caused by the severe coughing. His fever has stayed away this time, so now we have to wait for his counts to recover. His ANC crept up yesterday, but plummeted to zero today. Now we are looking at being here at least until Thursday.
They just brought Grant's lunch, which he does not like. So, he said "I'm not hungry, I'm sleepy" and rolled over and went to sleep. Gotta go catch a nap!

What a Miserable Night!

2010-10-19T06:43:00.002-05:00

Grant didn't sleep at all during the day yesterday, so I had high hopes for a restful night. Not so much! We didn't go to sleep until about 11:00. By midnight, he was sweating like crazy again and waking up crying. He went back to sleep and at 2 a.m. he woke up coughing and crying again. He got choked and just started vomitting. Of course he was very upset so he was crying, but he didn't have much strength so it was more like wimpering. He was not running any fever so they were trying not to give him tylenol, but at this point, they did. They also gave him Zofran for nausea. After the wonderful nurses gave him a fresh bed, he slept off and on the rest of the night, but kept coughing. And everytime he coughed, I made him sit up so he didn't get choked. At 6 a.m., I turned on some cartoons to try to distract him, b/c he was crying and didn't know why. The t.v. didn't help things b/c he couldn't open his eyes to watch it. They were almost swollen shut and poured liquid every time he tried to open them....which upset him more. So, this morning he has had more tylenol and benadryl. I will update again after the doctor sees him.

Add Trent To Your Prayers

2010-10-18T16:50:00.003-05:00

Trent was sent home from school today with a fever. Under the circumstances, we thought it was wise to go ahead and get him to the doctor. He was diagnosed with strep. So, he got a shot and should not be contagious after 24 hours. Hopefully, he will be feeling better soon too.
Grant is doing well this afternoon. He has not had fever since noon. He has been laughing and playing games and is having some pizza and salad for dinner.
Thanks for keeping up with us and keeping all of us in your prayers.

Back Up

2010-10-18T09:27:00.002-05:00

We had an interesting night. Grant slept hard from about 8:30-11:30 when his temperature broke. Then, he kept waking up crying. He was sweating so much that he kept soaking his pillow. He was pretty wide awake about 1:30 and had 2 bowls of Fruit Loops and watched Cars. I made him go to sleep after that and he slept until about 7:00. Needless to say, I did not get much sleep at all. :( His temperature was back up again this morning. He has had some tylenol so it has come down a little. But, we need it to stay down on it's own. The doctor has seen him this morning. She said he looks good, but we will just be doing the same thing as yesterday. He will continue getting antibiotics and tylenol as needed. And eating cereal..... :)

High Temp

2010-10-17T20:19:00.003-05:00

Grant's temperature came down this evening after he got some tylenol. He was talking a little more and eating more Cheerios. But, it has spiked again. He has already had more tylenol and it just keeps going up (103.3). Please keep praying for our little Grant. He is being such a trooper. Also, he has been having some leg pain. The nurses aren't sure what is causing that, so we don't really know how to treat it. And Rudy and I don't want to give him more medication if we don't have to. Please pray that we are all able to get some rest tonight.
UPDATE: 11:40 p.m., Grant's fever broke! Yahoo!

What?! The Hospital?

2010-10-17T14:23:00.002-05:00

That's right. We are in the hospital. Grant spiked a fever last night about 1:30. We prayed and stalled all night, but decided we needed to bring him in this morning about 7:30. Grant has done absolutely wonderful. He has been so cooperative and compliant even though he feels terrible. They took blood and cultures and did x-rays of his chest and sinuses in the ER. His counts were very low (ANC 40) and the x-rays diagnosed sinusitus and pneumonia. The tests came back negative for flu and RSV.
He was admitted to the hospital. Dr. Heym was the on-call oncologist today, so he met us in the room to examine him. The ER doc, Dr. Heym and the nurses all say how good he looks for being this sick. He will have to be here until he is without fever for 48 hours and his counts are on the way back up, which will probably be at least Wed., since he still has fever as I write.
Dr. Heym gave us a hard time for not calling at 1:30 when he first got to 101. We gave Dr. Heym a hard time b/c I called on Friday afternoon about Grant's cough and he told us to wait it out at least through the weekend. He's a Yankee fan. What does he know?? Either way, we're here now.
Rudy and I are pretty bummed. It's been almost a year since he was last in the hospital. But, he doesn't seem to mind. When we asked him last night if he needed to go to the hospital to get some medicine, he said yes. Then he said b/c he wanted to eat the yummy food they have there. He's had 2 bowls of Cheerios. He eats Cheerios everyday at home. ?????
He has been able to rest some since we've been here. He is dozing off and on. He chose to watch football over movies or cartoons. He is his father's son! So, I guess it's just a lazy Sunday afternoon....in the hospital.
Grant is able to have visitors. But, everyone will have to wear a mask, b/c his counts are so low. We are in room 3112.

Pumpkin Patch

2010-10-15T09:27:00.004-05:00

We took our first trip to the Pumpkin Patch this year. It was a field trip with the Grant and Trent's school. We all had a great time!

Just Another Day at the Clinic

2010-10-11T15:42:00.002-05:00

Grant had a great day at the clinic today. We were only there for an hour....record time! He fussed that he didn't want a poke, but when I told him he had to sit still, he did. It went very smoothly. He got his chemo in his port and then the noodle came out. The worst part of the whole process is having to take the sticky bandage off that they put over it while he is accessed. But, we just go really fast and it doesn't have to last long.
Grant has been taking a daily allergy pill for quite a while. However, this week he has developed a pretty yucky cough. Dr. Heym said that his lungs were clear and otherwise sounded fine. He started his steroids today, so we are hoping they kill 2 birds and help with the cough as well. If not, he will have to go back in for something else. Also, his ANC was back up today and with his growth, Dr. Heym decided to increase one of his chemo doses. So, the methotrexate that he takes once a week will go from 5 pills to 6. Please pray that his body can handle this change and that the steroids help his cough. Thanks for all your prayers!

Light the Night 2010

2010-10-02T23:04:00.004-05:00

Light the Night is only a week away! Be sure you click the link and go to our team page and register if you plan on walking. We are looking forward to another fun evening this year....hopefully warmer....and dryer. :) http://pages.lightthenight.org/ntx/FtWorth10/GrantsBigAdventure

Upward Soccer

2010-09-18T14:23:00.003-05:00

Thank you all for your prayers this week. Grant had an absolutely GREAT week! We had our moments, but I didn't seem to lose him in frustration and crying. We were able to talk about what was upsetting him and work through it. He is such an amazing kid!

We also appreciate those of you who were praying for his soccer game this morning. They won! Grant scored 2 goals! I was so worried that the steroids were going to effect his balance and stamina to the point that it would frustrate him. He also complained of leg pain yesterday and this morning, which is usually caused by the chemo he gets in his port on clinic day. But, he went out there and played so hard. Of course, Rudy and I could tell a difference, but thankfully, he did not. He just played his little heart out. And it was SO hot. I'm just so proud of him. Can you tell???

Then we rushed off to music class. We are so priveleged to get to do this each semester. And we are so grateful for all of our friends that make this happen.

Grant's took the last of this round of steroids last night, so we should be on our way back up. Thank you again for all of your thoughts and please continue to remember Grant in your prayers. His ANC is still pretty low, so he is at a higher risk for illness. But, we know he is in God's hands. Isn't that a wonderful thought?!

"When I am afraid, I will trust in you. In God, whose word I prais, in God I trust, I will not be afraid." Psalm 56:3-4

Little Sprouts

2010-09-15T09:53:00.002-05:00

I had every intention of blogging about the first day of school, but now they've been 3 times. The boys started preschool this year at Little Sprouts Preschool at our church. Grant goes M, T, Th and Trent goes T, Th. It has been a wonderful experience. Grant and Trent have come home every day talking about the fun things they are doing. It's always strange to have to explain Grant's situation in a new environment, especially when he doesn't look sick. But, his teacher said that he did great his first day on steroids at school. We were praying for that. We are looking forward to a great school year!

Back on the Roller Coaster

2010-09-13T20:56:00.002-05:00

Grant had his regularly scheduled clinic visit today, which included a spinal tap this time. He did amazing! He's getting so good at this, I'm not going to have anything to report pretty soon. He got cream on with no problems. He waltzed into the clinic talking to everybody. He even laughed while he got his port accessed. I know! Crazy! But, then he realized he was going to have to get a back poke (spinal) when the nurse asked to put cream on his back. He did it, but did not want to. When he went in to have his exam with Dr. Heym, he would not talk to him. It was weird b/c he usually does and he had been chatting it up with everybody. Then, when he got loopy, we went in for his procedure. We were waiting for Dr. Heym to come in the room with us and all the nurses. So, somebody said, "Where is Dr. Heym?" And Grant chimed in with, "I don't want Dr. Heym in here!" That's why he hadn't wanted to even talk to him, b/c he knew he was going to be giving him a back poke. He's no dummy! He cried during the actual poke and it breaks my heart to see those big, sad tears dripping off his face as he leans forward onto a pillow. But, he recovers pretty quickly. He still has to lay flat on his back for 30 minutes after the procedure to help prevent headaches. That's always a funny time b/c he is loopy and very talkative. All in all, it was a successful day at the clinic....successful, not easy.
Grant was nauseous off and on for the rest of the day. After the loopy medicine wore off, he began crying....about everything. He cries at the drop of a hat. Then, he's frustrated b/c he can't control why he is crying, which makes him cry more. Then, I cry. My heart breaks for him.
Please keep us in your prayers this week as we all walk a tough road.

Light the Night 2010

2010-09-03T21:43:00.001-05:00

We have a team again this year for the Light the Night walk to support the Leukemia and Lymphoma Society. Grant is excited and is recounting all the things he can remember about last year. It was such a highlight for him during a pretty rough time. We would love to have all of you join our team and join us for a great time in Fort Worth on Oct. 10th. The festivities begin at 5:00. If you would like to join the team or make a donation to LLS, go to http://pages.lightthenight.org/ntx/FtWorth10/GrantsBigAdventure. We are looking forward to another great time this year!

No Crying?!

2010-08-09T21:20:00.003-05:00

Wow! You would not have even believed that it was Grant at the clinic today. I was hoping that today would be a good day after we had a very successful cream application at home. I just told him it was time to go and we need to get his cream on. He walked over with no fussing and we took his shirt off. We were laughing and being silly and he just calmly walked away. I asked him where he was going and he said he was "running away" b/c he doesn't like cream. Then he started laughing and came back. We put the cream on and then he said the sticky was going to hurt. I told him if he would stand still I could fix it where it wouldn't bother him so much. That's exactly what he did and he was off to get in the car. Usually, after the cream is on, it renders him paralyzed. He, all of a sudden, cannot do ANYTHING b/c he "has cream on". Not today. He did everything like he normally does with no cream.
He always has mixed feelings about going to the clinic. He enjoys seeing all the people, but he does not want a poke. When we got ready to access his port, not only was he not crying, he was talking and laughing. Right when she went to poke him he gasped and that was it. It was amazing! He was so excited he jumped down to run out of the room when the nurse was finished and ran smack into an exam tray. He busted his head really hard and was very embarrassed, so now begins the screaming crying. It was terrible that he had done so well and then ended up crying anyway. He has a knot on his head. Dr. Heym was glad he didn't have to do stitches.
So anyway, his check-up went well. His counts were okay, but his ANC had dropped a lot. It was 580, which is the lowest it has been since he started maintenance. It has to be over 500 to continue full chemo, so we are still on schedule. Dr. Heym said he may have been battling an infection but, hopefully, the steroids this week should give him a boost. He also got chemo in his port. He wasn't feeling very well when we got home this afternoon and was happy to take some anti-nausea medicine. But, it is so amazing that he never lets it get him down.
Thanks for all of your continued prayers!!

NRH2O

2010-08-04T21:29:00.004-05:00

We got to go have wonderful day at the water park today. Grant was so excited this morning, he couldn't get there fast enough. It was 104 today, so a great day to be in the water all day. The boys loved it! We all had a really great time. It's always nice to see Grant participating in things just like all the other kids.

Grant's Thoughts

2010-08-01T21:05:00.002-05:00

We recently returned from our trip to Hot Springs, AR that we take every year with my family. It was a shortened version b/c Granny is back in the hospital and Rudy was unable to go. That said, I spent quite a bit of time in the car with the boys. Apparently, Grant had a lot of time to think. These are a couple of the things we talked about.
I was telling him that he had been to Hot Springs before, but he was only 2 and Trent was a tiny baby, so he probably didn't remember. We didn't get to go last year. He thought for a while and then asked, "Is Trent going to have to get sick with leukemia and go to the hospital when he's 3?" Of course I replied with "I hope not!" He said, "then why did I have to get sick when I was 3?" Wow, that's a great question! I don't know, but I'm sure glad God is taking care of you and getting rid of that leukemia.
At one point during our drive Grant asked me where heaven was. I said it was with God. I said that the great thing about heaven is that nobody is sad or hurt or sick, etc. Doesn't that sound great?! Very sadly he said, "so I can't go to heaven b/c I'm sick." I was so broken-hearted I didn't even know how to respond. I told him that of course he can go to heaven and when he gets there he won't be sick ever again.
Conversations like this give me a small glimpse of his perspective. It's so hard to know he is dealing with all of this at a such a young age. I am just so proud of him and pray that God uses him to do amazing things.

Grant Memorizes the Bible

2010-07-30T21:20:00.004-05:00

Grant has done a really great job memorizing his Bible verses and the New Testament books of the Bible. Here is a sample....

Great Day at the Clinic

2010-07-12T21:06:00.002-05:00

Today's visit to the clinic went very smoothly. We were silly this morning putting on cream so that went well. Then, Grant started to get worked up right before the nurse was going to access his port. I just reminded him that he could fuss if he didn't like it, but he still had to sit still. He calmed down and it was over. He always likes to help the nurse put his blood in the test tubes.
Dr. Heym checked him out and said he looked great. His counts were back up, but we still did not have to increase his doses. We will most likely have to next time.
Grant started his steroids this morning. Unfortunately, the weepiness has already started. And, he has already been eating more than normal. So he may eat everything we have in the next week. :)
My Granny is having a procedure tomorrow to put a filter in her veins b/c she has developed a very large blood clot in her leg. She can not have blood thinners to treat it b/c of her head injury. She is going to be in pain for several months waiting for this to resolve itself.
We covet your prayers for Grant and Granny and the whole family. We are so thankful that we have so many prayer warriors out there praying for us. God is Good!

Granny Update

2010-07-09T23:01:00.003-05:00

Just a little update on Granny...She has been at an LTAC (long-term acute care) center for the last 2 weeks. She has been moved out of the ICU there and is doing great. They have removed her trach and she is no longer using her feeding tube. She is doing great with her physical therapy and is getting stronger everyday. They are hoping to release her to go home sometime next week. Please continue to pray for her full recovery.
Grant and Trent have been going to visit her a couple times a week. They ask me every day but it is not a very kid-friendly place. :) Grant had to wear a mask the first few times. He doesn't really need to now, but he insists that he does. When all the family was here last weekend, all the little cousins thought it was cool that Grant looked like a doctor. They wanted masks too!
Grant returns to the clinic on Monday for his routine chemo.

Baby Polka Dot

2010-06-18T20:36:00.002-05:00

Grant is at the end of his week of steroids. As always, his stomach is pretty distended at this point. He has always rubbed it and rested his hands on it uncomfortably, much like a pregnant woman. This time, he has been around 2 of my cousins that are expecting. So, he has started talking about the baby in his tummy. It's a sister and her name will be Polka Dot. Thankfully, the tummy will just go away after he stops taking steroids. :-)
My Granny is still in ICU. Everything looks great and she is responding well, except for her breathing. Please pray that she will strengthen and be able to breathe on her own. Her brain seems to be sharp and she started some physical therapy today. Grant and Trent went to the hospital to see Grandpa Dub. Grant wanted to see his Granny, but we decided not to do that right now. We appreciate your prayers for our WHOLE family.

God does miracles!

2010-06-15T18:27:00.004-05:00

Grant went to the clinic yesterday for his regularly scheduled visit. This was the one that required the spinal tap. Rudy took Grant to the clinic and said everything went fairly smoothly. His ANC was way down compared to where it has been, so he may be fighting a bug on top of allergies. Rudy also said he did quite a bit of crying during the spinal, which isn't really normal. To explain my thoughts on that, I will have to back up.....
Saturday, we were spending time at my parent's house with our family (Keith, Kristina, Granny & Grandpa). We had been out there all afternoon and had a great time. That evening, we even decided to play a little whiffle ball with the set Trent got for his birthday. While we were playing, Granny (83) tripped running from 2nd to 3rd. She fell sideways and hit her head. But, she jumped back up, and when we told her to sit down while we finished, she insisted that we needed her to finish the game. Long story short from there.....the fall caused a brain hemorrhage and she wrecked driving home. Grandpa is ok. Granny is still fighting. She had a lot of blood on her brain that had to be removed by surgery yesterday. Things looked very hopeless on Saturday night. But, on Sunday, God did a miracle and she began to improve. She has been getting better and better since. Today, they took out the breathing tube, but, this evening, they are having to put it back in. We have seen lots of miracles in the last year with Grant and we know God is still at work with Granny.
All that is to say, Grant is very close to Granny and Grandpa. He saw her fall and knows she is sick. Things have not been "normal" for the last few days and that causes anxiety for Grant. Please continue to pray for our whole family.

Trent Turned 2

2010-06-06T21:35:00.003-05:00

Happy Birthday Trent! Trent turned 2 yesterday, so we drove for 14.5 hours to celebrate. :) Ha Ha! We celebrated by stopping for a mcflurry at mcdonald's on the way home.

We went to my parents' house today to celebrate with cake and ice cream and his present. He was so excited about his "tractor".

We are very proud of you Trent and love you very much. I can't believe it's been 2 years!

www.lighthousefamilyretreat.org

2010-06-06T15:45:00.003-05:00

Retreat Families and our Leaders

Grant waiting for breakfast, his favorite part

Grant and his new friend Conner, GO BLUE!

Grant and Trent LOVED the beach

Grant and Trent on the bridge from our house to the beach

I don't even know where to start. We just returned from a week-long trip to Seagrove Beach, Fl. with an organization called Lighthouse Family Retreat. Lighthouse ministers to families that are dealing with childhood cancer by providing a carefree beach retreat for the whole family. All I can say is it was AMAZING! We had no idea what to expect before we went. But, any expectations we had were completely exceeded.

We left Sunday morning and drove 8 hours to Hattiesburg, MS. We spent the night and then drove another 4 hours to Seagrove on Monday. We were completely overwhelmed by friendly faces when we arrived. We were welcomed into a beautiful beach home that would be ours to enjoy for the next week. All of our bags were unloaded and delivered by a group of volunteers.

The next week was filled with activities for kids, parents, and whole families. We were completely taken care of by an awesome team of volunteers; some that prepared and served our meals, did our laundry, made our beds, took care of our kids, pretty much whatever you could think of, all while we enjoyed the beach and each other.

The boys completely enjoyed having all the attention they could ever want. And Rudy and I had a wonderful time at Common Grounds, a place where we met with other retreat parents that had a child with cancer. We met some amazing families and we all came away with some incredible friendships.

We left Saturday morning and drove all day to get home around midnight. The boys did a great job traveling.

We want to say THANK YOU to every single Lighthouse volunteer and staff member that made our week unforgettable. We appreciate you.

But I don't like pokes!

2010-05-23T13:19:00.005-05:00

"Loving" on Trent

Grant wrapped up his steroids on Friday. We tried a new technique this week to help lessen the extremity of Grant's mood swings. I actually think it worked. We tried to cut all sugar from his diet. That meant no apple juice slushes among many other things. He was such a great sport. I explained what we were doing at the beginning of the week and why. He got on board and, not only was he cooperative, he was proactive. One day my mom suggested a fruit bar (Nutrigrain bar) for a snack. He told her, "No, I can't have that because I have leukemia and it has 12 grams of sugar in it!" He had heard me telling Rudy that when I was talking about how hard it is to completely eliminate sugar. All in all, I would say it was successful and will try to continue doing this when he has to take steroids. He can be very emotional ranging from lots of hugs to crying at the drop of a hat. But, we did not seem to lose him in fits of anger this week. Although he was trying to understand, he will need some more education as we go through this process. We were looking for a snack for him at a concession stand and he said, "oooo, Skittles, I don't think those have sugar mom!"

Grant's clinic visit on Monday went very well. He knew a couple of days prior that it was scheduled for Monday. But, Monday morning when we were getting ready to go he asked, "Mom, do I have to get a poke at the clinic today?" When I told him yes, he said, "Oh Mom, I don't really like pokes." So I began to search for an approach to this month's poke. First, I tried reverse psychology (which usually works like a charm). I bet you can't get your poke without crying....? He said, "No, I can't b/c it hurts." Hmm, that didn't work. So we talked about the fact that it does hurt and that's okay. Sometimes things hurt but we still have to be a big boy. So, I told him that it was okay to cry when it hurt, but it was not okay for him to throw a big fit and wiggle around making it difficult for the nurse and Mommy. It worked! When it was time to get his poke, he sat perfectly still on my lap and cried. It was awful! Usually I am so mad and frustrated trying to accomplish the task that I'm not too worried about how he is feeling. This time, he was completely cooperative and just had tears running down his face. It was so much harder b/c it was heartbreaking to watch him choose to endure the pain like a big boy. I was so proud and crushed all at the same time. Then, when it was time to take his bandage off to go home, he didn't even cry. What an amazing kid!!!
He also has asked me when does he not have to go to the clinic anymore. I told him he will have to be 6. So he is counting down.

He got a great report from Dr. Heym. He always comments on how good Grant looks. His counts were all okay. His ANC is actually too high. Can that be? This month his was around 4100 and they want it between 750-1500. This is the second month in a row that it has been too high. Dr. Heym believes this may be because Grant is growing or his body is metabolizing the chemo more easily. What does this mean? Most likely, if it is still up at the next visit, Dr. Heym will increase the dosages on his medication. Bummer! But, we want to do what is best for Grant. They want his bone marrow suppressed but not bottomed out like it was in earlier treatment. We will continue to follow Dr's orders on how best to care for Grant and God will take care of the rest.

Thank you for continuing to follow our journey and especially for the prayers. We really appreciate all of the amazing acts of kindness from friends and strangers alike. God is good!

And whatever you do, whether in word or deed, do it all in the name of the Lord Jesus, giving thanks to God the Father through Him. Col. 3:17

Hello Everybody....So Glad To See You

2010-05-16T16:03:00.003-05:00

That is one of the songs that we sang at music class every week. Yesterday marked the end of our 16 week music class at TCU. This was something that was provided to us and some of our cancer friends by an organization associated with Cook Children's. It was a wonderful blessing to us and we are so thankful that we got to participate. It was really great b/c the whole family got to go together and Grant and Trent loved it.

We are headed back to the clinic tomorrow for Grant's scheduled visit. He will begin steroids in the morning.

Happy Mother's Day!

2010-05-09T15:35:00.003-05:00

Last year, we were just heading home from the hospital from our 2 week stay. At that time, it was the best mother's day gift I could have asked for. Our family has been so blessed. I am so thankful to have Grant and Trent as my precious gifts from God.

And, I have to take this opportunity to thank my mom for the tremendous help that she has been over the last year. I am so thankful that I have had her as my mom, Grant and Trent's Nana, chauffeur, errand-runner, clinic companion, prayer warrior, and especially friend.

The Party's Over

2010-05-02T17:11:00.005-05:00

We have been celebrating Grant for several days now. Yesterday, we had his kid birthday party. He was so excited he couldn't hardly stand it. It was so much fun to see Grant having such a great time. Thunderstorms were in the forecast so I had been praying for days for no rain. God answered and we had great weather for the kids to play outside on the playground and in the jump house. We had Sesame Street cupcakes...Elmo, Big Bird, Oscar, and Cookie Monster. Everyone had different colored icing smeared across their faces, except for Grant. He ate his cupcake with a fork and only 2 bites. However, when I asked him his favorite part of the party he said the cupcakes. I think he liked having everyone sing to him. Thanks to everyone that made this a special day for Grant!
Now he is wanting to know when he is going to turn 5.....

Happy Birthday Grant!

2010-04-28T21:16:00.003-05:00

I'm exhausted tonight. We celebrated Grant all day! He even started saying, "but, it's my birthday." We started off with a trip to the zoo with Nana. The boys had a great time and it was a beautiful day for the zoo. We had a picnic that included a piece of birthday cake from last weekend's party. After a little nap, Grant wanted to watch his Bee Movie that he got for his birthday from Uncle Keith. At Grant's request, we had spaghetti for dinner (which he did not eat). Then, he wanted to ride his scooter to the playground at the front of our neighborhood. We only made it to the one about halfway. His energy level is definitely down. But, Trent had a blast trying to keep up on the tractor. When we got home, we topped off the day with chocolate chocolate chip ice cream. After a bath (and medicine), it was off to bed. What a day!

I've been dreading today for a while now. But, it was not as bad as I was expecting. With a 4 year old and almost 2 year old, there isn't a lot of time to think...thankfully. My thoughts today went back and forth between where we were a year ago and how far we've come. But, I battle my thoughts (fears) everyday. I have to surrender Grant to God everyday and know that He holds Grant in the palm of his hand, and Trent, for that matter. What beautiful gifts God has given us!

Do not fear...for I am your God. I will strengthen you and help you.... Isa. 41:10

No Pokes, Just a Party

2010-04-26T21:22:00.003-05:00

Grant wrapped up his 5 days of steroids on Friday and had a pretty good weekend. His stomach is distended but, hopefully, that will go away quickly. He is still very emotional and it goes both ways. One minute he is screaming at everyone and the next he is being as sweet as can be. Trent doesn't understand why he tells him he loves him so many times a day. ;)

We've been celebrating his birthday at almost every opportunity. So, this weekend we had a little family party. Of course, he had a blast. And he loves every chance to eat sweets. Unfortunately, he does have a sweet tooth. But, it's a double-edged sword. That was something that went away and he didn't want anything sweet at the beginning of this process. So, it's nice when you see something go back to "normal".

Grant's diagnosis coincides with the opening of the clinic we go to in Grapevine. So, today we attended a birthday celebration for the clinic. Grant was so excited to go to the clinic just to play with his friends. No pokes, no medicine, not even a blood pressure check. It was very humbling to be there with some that are walking through this with us. All but one of the children there today were ahead of Grant in their treatment schedule. However, all of them are having or have had recent complications or delays. I am so grateful for all of you that continue to pray Grant through. We still have a long way to go.

Those Darn Steroids

2010-04-23T09:40:00.002-05:00

Today is the last day for this round of steroids. Thank goodness! I want to give you an idea of the effect they have on him. He can't control his emotions and then that frustrates him even more - to be out of control.
He has never acted out at school. He does everything they ask and is a good student. Even when he would be having trouble at home before he got sick, I would ask if he was doing the same things at school. They would look at me like I was crazy b/c he would never do anything wrong at school. He went to school yesterday. His teacher told me that he had a really hard day. She said he just lost it a few times, but he always recovered. For him to do this at school just shows that those steroids are making him crazy.
He simply cannot control himself sometimes. When I ask him why he's crying he says, "I don't know." When I suggest that he stop if he doesn't know why he's crying he says, "I can't". It sounds so defeated like he really would love to stop crying but doesn't know how to make his body do that.
Please pray for Rudy and I and everyone else that takes care of Grant as we continue to find that balance of parenting Grant while we are sensitive to his situation. And, of course, please continue to pray for Grant as he deals with all that is going on in his body.

Run, Grant, Run

2010-04-19T21:26:00.003-05:00

Last week was a really great week for Grant. He was feeling good (his stomach wasn't distended), eating well, and had lots of energy. One day we walked to a neighborhood playground for my exercise. It's about 2 miles one way. After we had played there for a while, Grant decided he wanted to run on the way back. That crazy kid RAN the whole way home. I kept asking if he wanted to ride on the stroller for a rest, but he just kept running. It actually made me so happy for him that he was working so hard sweat was pouring down his face. He has felt GREAT!
That's why it was so hard to go to the clinic today for his scheduled visit. Everything went as expected; he did great with everything except accessing his port. But, he did get his chemo and start his steroids again. Hopefully, he will have another great month as we begin to celebrate his birthday. Yes, it's not just a one-day celebration. We took cookies to the clinic today to celebrate his birthday there since we will not be back for another 4 weeks. He was very excited to share his cookies with all of his friends (nurses).

Reflection

2010-04-11T16:11:00.000-05:00

This Year
Last Year

Right now, when I think about the last year, it brings thoughts of fear, hurt, helplessness, sadness. But, when I really dig deep, I remember that God has brought us through all of that and I actually have a great feeling of pride for the champion we have in Grant. That doesn't stop the sad thoughts from coming. It just helps overcome them.

It seems that my mind immediately went into reflection mode in April, these being the last days that Grant was well, I guess. Last year we had taken pictures in the bluebonnets. Rudy and I looked at those pictures a lot after Grant was diagnosed and had lost his hair. So, we went and took new pictures in the bluebonnets. I think this will now be a tradition.

I've mentioned to several of you about Grant's hair. Grant losing his hair was one of the most traumatic things for me. It was a visual realization of what was happening to my little boy. And it was so difficult to hear everyone tell me that it was going to come back different. I didn't want it to come back different. I liked it the way it was. Well, I love it now. I love that it came back curly. My mom always thought that we were going to have a curly-headed kid like their mama. We just didn't know cancer was going to be the route we were going to have to go. :)

Even as I write this, my mind wanders to all that has happened in the last year. One thing I can say with certainty is that we are so thankful for the prayer warriors that continue to fight this battle with us.

I am sure that there will be more entries like this as I continue to reflect on the last year, especially as we approach Grant's birthday/diagnosis day.

Happy Easter

2010-04-04T13:22:00.003-05:00

We are thankful today to reflect on how much Jesus loves us as we celebrate His death and resurrection. We are blessed!

Disney on Ice

2010-04-04T13:11:00.003-05:00

It was our lucky day. I won tickets to Disney on Ice on a radio station. So we got to go to Fort Worth with our friend Meg and her mom to see the show. The kids were so excited. Grant told us so the whole day and the entire way there. Mickey Mouse was Grant's favorite. Trent just pointed at everything with wide eyes. It made me feel very old. I knew most of the characters, but not any of the new ones. And poor Grant didn't know any of the ones with princesses. He just wanted to see Mickey Mouse, who was on the ice for most of the show, so that was good. We all had a really fun time.

Play Time

2010-03-26T20:30:00.002-05:00

Grant and Trent had a fun play day today with our friend Meg from the clinic. It was so sweet to see her and Grant play together. They were both on steroids this week so we were somewhat fearful of an explosion, but it was exactly the opposite. They played really great together, almost like they understood each other and what the other one was going through. Thanks to the beautiful weather today, they played and played outside. It was a little comical and sad all at the same time to see them both struggle to run correctly and comfortably with their bloated tummies.

Grant may have played a little too hard today. By this evening, he was completely wiped out. He was complaining that his tummy hurt, so I gave him some anti-nausea medicine. He never threw up, so maybe we caught it soon enough. We also forced him to take the bandage off his back from his spinal tap on Monday. It shouldn't have still been on, but he hates taking it off. He fussed, but handled it okay. He went to bed exhausted.

Starting Over

2010-03-22T21:06:00.003-05:00

Grant went back to the clinic today to start his 12 week cycle over. That means he got a spinal tap and chemo in his port. He also started his steroids again. All of his blood counts were okay. He is still very anxious about putting on his numbing cream and getting his port accessed. Of course, his spinal went well b/c he got to take a loopy pill. Today he was singing in the playroom and that is not something he would normally do with other people around. It's always interesting to see how it's going to make him act. We are hoping for an overall improvement from last month.

We just returned from a visit to Houston. Grant was very excited to see his Uncle Keith. We went to the Children's Museum, which made me want to follow him around with hand sanitizer. It was stressful! We also enjoyed a beautiful day watching children's opera at an outdoor theater in downtown Houston called Discovery Green and made a trip to the park. On Saturday, the snow storm that hit DFW came to Houston as rain...a lot of rain, so we went bowling. We had a really great time! Thanks Keith!

What is Normal??

2010-03-13T16:28:00.005-06:00

This has been an interesting month. We thought we had this maintenance phase figured out and we were cruising. But, that's when things don't go the way you planned. Compared to the first 2 months, this one has been much different. Grant has not bounced back from the steroids like he was. He is still sporting a bloated tummy which makes him uncomfortable and move awkwardly. He has also been sick a couple of times and that is very draining. I can just see a difference when I look at him. And I think all of the physical things frustrate him, so he also struggles mentally and emotionally. Also, Trent has been sick a couple of times. They had to miss a day of school, music class and a birthday party. I keep telling myself that, for months, we didn't do one single thing. So, this is not that bad. But, it's very hard to tell Grant that we are going to do something and then not get to, especially not going to school. He LOVES school. He asks to do his school work at home too. All that said, I am continuing to learn to be flexible.

Everybody has had an okay day today. Grant and I went to music class and then we all went to ride the Forest Park Miniature Train in Ft. Worth. We rode for about 25 min. from one depot to another. We got off and played on a huge playground at Trinity Park. Then we boarded the train again and rode back to the first depot. It was really beautiful today and the boys absolutely loved it. Trent loves cars, trucks, and trains. Grant couldn't look at the camera in the picture where they are on the train b/c the conductor was saying "All Aboard" and I was not on the train. He yelled "No!" and then told me to hurry and get on.

Also, please pray for Grant's friend Lexi. She has been in the hospital all week and we are not sure when she will get to go home.

Doing Better

2010-03-07T15:47:00.002-06:00

Trent was the only one who slept much last night. Grant really struggled through most of the night. He was finally able to go to sleep early this morning and slept for several hours. When he woke up, we could tell immediately that he was feeling better. His temperature was almost gone. He was moving much better and talking, which he did not do at all yesterday. Throughout the day, he has gotten better and better. Thanks for your prayers. It was so difficult for Rudy & I to decide whether we thought his body was strong enough to fight this on it's own. Grant and Trent both still have a lot of congestion, but I think we going in the right direction.

Pray for Wisdom

2010-03-06T19:19:00.003-06:00

We've had a sick house for the last few days. Grant and Trent both went to the doctor on Thursday. We are a little more edgy when they get sick these days. So, we took them to the doctor b/c we wanted to hear them say their lungs were clear. They both got the ok. But, Grant's doctor prescibed an anitbiotic as a precautionary measure. Everybody seemed to be doing a little better on Friday.
Rudy and I went to a Mavs game with some friends on Friday night, so the boys were very excited to get to spend the night with Nana and Grandpa. Thanks to them, we had a wonderful time b/c we did not know that they were having a rough night. Grant got sick and ran a fever all night. It has gotten worse throughout the day today and we are now trying to decide whether or not to call the doctor. Please pray for wisdom as we weigh Grant's sickness against the trauma of the emergency room. He has been in and out of sleep all afternoon and really looks miserable.

Not feeling so good

2010-03-02T22:22:00.002-06:00

Monday night Grant started feeling yucky. He told me his tummy didn't feel good and ended up throwing up and skipping dinner. He was freezing and shivering. He was wearing his coat and hat and sitting under a blanket. By the time he went to bed, he was running a low fever. Every time we asked him how he was feeling, he said, "Not Good." He had some trouble sleeping all night until his fever broke around 5 a.m. He was feeling a little better this morning, but he still didn't have very good color and didn't eat much all day. He's still having a hard time falling asleep tonight.
I just think we get a reminder every once in a while that there is a lot going on in Grant's body. And he handles everything so well. He just calmly got up and said, "Mom, I need to get up from the couch b/c I need to throw up" and walked into the bathroom. I know that's a lot of information, but I'm just amazed by him. I just pray that God can use all of this to shape him into an amazing, Godly man.
Thanks for your prayers!

Thanks to Elmo

2010-03-01T15:34:00.004-06:00

This round of steroids stuck to the norm. Grant starts eating like crazy about halfway through. And even though it is only 5 days of steroids, day 5 & 6 are the hardest b/c it just builds up in his system. Grant starts to feel uncomfortable and gets pretty lethargic. His hair has come back enough now that he doesn't look "sick". It just looks like a really short haircut. We've even been teasing him that it's messed up when he gets up from his nap.

BUT, ELMO makes everything better. We were given a gift and were able to take the boys to see Sesame Street Live this weekend. Saying Grant was excited is a gross understatement. He talked about it nonstop and jumped up and down in line for tickets saying, "I'm so excited! I'm so excited!" He watched intently the whole time. Every time a song would end, he would say, "It's not over, is it?" Of course, he was also telling us the entire show that he was hungry. ;) Trent had a great time too. He was most interested in Elmo. It's always fun to see your kids with a smile on their faces.

We could thank so many of you for your amazing generosity. But, we are most thankful for all of the prayers. We know that the prayers lifted for Grant and our entire family are making a difference.

He looks so good!

2010-02-24T15:07:00.003-06:00

These are some more pictures from our trip. I forgot our camera the day Grant went to ski. :( So we had to stop on the way up the mountain to buy a disposal camera. So, these pictures aren't great, but they are all we've got of Grant's first ski experience.

Grant went to the clinic again on Monday and got another great report. He had to get accessed, which results in about 90 seconds of pure torture everytime. From the time she opens the package with the noodle in it until he has been stuck is awful. Everyone involved (3 this time) is usually sweating and holding their breath throughout the process. But, it's short! He handles everything else so well. So, we will just continue to prepare ourselves for the painful 90 seconds and then move on. The only problem is that Grant is getting bigger and stronger and holding him when he doesn't want to be held is getting more difficult. I keep telling them that they have to get a fan in there.

Grant gets such a great response when we go to the clinic. Many of his fellow patients were there. The nurses always seem so excited to see him. And Dr. Heym recognizes the cry he hears when Grant is being accessed. It's so encouraging to go and hear ALL of them say how absolutely great he looks. In the words of Dr. Heym, "This is what maintenance is supposed to be like!" He is doing amazing, which we know is the hand of God. We want to be careful to give God the glory for the miracle-worker that He is.

Grant was very excited to show everyone pictures of his ski trip. He colored, did puzzles with Ms. Cathy, watched a movie and had lunch. What's so bad about that?!

We went to storytime at our local library this morning. Grant loves this kind of thing and got to bring some books home with us. However, I was a bit nervous. Right after we got there, a little girl started sneezing and coughing all over her hands and the books. I pulled out the hand sanitizer and gave Grant and Trent repeated "squirts".

On a Trent note, we sit around and laugh at him continuously. He is talking so much, mostly things that family can understand. I stopped at Sonic last night to get some burgers for dinner. Trent was wearing a stocking hat. He had been playing with it - pulling it off and on. When the girl brought our food, she smiled at him and laughed. When she walked away, I turned around to find him with one eye out of his hat and the other covered with a big grin on his face. I said, "Are you being silly with your hat?" He just smiled and said, "I'm cute." I asked what he said to confirm I had heard correctly. He repeated it and I died laughing. He had never said that before. To all of you that tell him that ---Stop! ;)

It's been a while

2010-02-13T23:12:00.004-06:00

Well, we've been busy. We got to take a vacation to Pagosa Springs, CO with my family. Grant was ok'd to leave town as long as we got his numbers checked before we left town.

When we went to the clinic, he did so great. He picked which finger he wanted to get poked while we were in the car and he held it up the rest of the way. I guess he didn't want to forget which one it was. We had a plan to try to count to 40 before Maribel got finished squeezing his finger. It was a good plan, except Grant told me he needed to say 'ouch' before he counted. That's exactly what we did, but we only made it to 20. She was fast! No crying! His numbers were "normal" and we were free to go.

We left last Friday night and drove all night to arrive in Pagosa Springs about 6 a.m. on Sat. The boys did great sleeping in the car. Grant was SO excited about going to Colorado. We did a little of everything. We snow skied 2 days. We went snowmobiling and sledding. We got massages. We even played a little racquetball and wallyball. And, of course with my family, we played games every night. :) There were 10 of us that went. We had a blast. I think it snowed everyday, so the snow was great. Grant absolutely loved skiing. I think he wore out his Grandpa and Uncle Keith. He loved riding on the swing (lift) and looked over the front like a puppy dog out a window. He skied with an "edgy-wedgy" on his skis to hold them together. By the end of the day, he was wanting to ski on his own and begging to "go one more time". I'm so glad he liked it. One great thing was, that for the one day that Grant went skiing, I forgot that we were treating leukemia. I guess I just was more worried about him getting down the mountain safely. ;) Or maybe that we were just doing "normal" things. Trent liked being out in the snow and loved wearing his snow boots. But, he had on so much to keep warm that he couldn't get up if he fell. He would just yell "tuuuck" (stuck). The week just flew by. We left Colorado on Thursday night to arrive home early Friday morning to over a foot of snow and some rough roads. Now we are just trying to recover from vacation and get back in the swing of things.

Return to the Clinic

2010-01-25T20:27:00.004-06:00

Grant went to the clinic today for his monthly visit. He had a really hard time with putting on his numbing cream and getting his port accessed. It was almost like he forgot what we do at the clinic. The kid has a mind like a steel trap, so I think he chooses to not think about it and block it out. After that he did really well. He got a great report from Dr. Heym and did everything that was asked of him - cheerfully. All of his blood counts looked really good too.
Grant started his 5 days of steroids today and is continuing with all of his other medications. He took some pills at the clinic today and no one could believe how well he did it b/c he puts up such a fight over the accessing of his port. We've decided that it's just the one thing he's chosen to take a stand on. And that's OK....but he still has to do it. ;) Everyone at the clinic commented about how great Grant looked...and that his hair is coming back...again.
Right now, our concern is that Trent seems to have a cold. He is feeling pretty terrible and not getting much sleep. We just hope that he can recover quickly and the rest of us can stay healthy.
Several of you have been concerned and contacted us regarding the news reports about benzene in the air causing leukemia. We have presented this information to Grant's doctor and he has assured us that Grant's case is completely random. Many organizations, including Cook Children's, are continuing to study the effects of benzene in the air and we will be involved in anything that could prevent other families from facing a leukemia diagnosis.
We know that your prayers have been the most important part of Grant's treatment and ask that you continue praying as we travel this road.

So Far So Good

2010-01-18T20:28:00.003-06:00

Well, this has been an exciting month so far. We are all beginning to get back to some of the things we were doing before Grant got sick. None more excited than Grant.
The first time we went back to church, he told Trent over and over the whole way that "we are going to church". He couldn't sit still in his seat. He had a blast and talked about it for the rest of the day.
Last week, Grant & Trent got to return to Mother's Day Out one day a week. Grant had everything planned out days before we went, including what he AND Trent were going to take for lunch. When we walked in the door, he heard the kids playing. He said, "Mom, I hear all of my friends!" There is no way to capture the excitement and joy in his voice in this blog. It made me cry!
The boys also got to return to music class at TCU. This is the same class they did before with other cancer patients. They really love it and this time it will be 16 weeks long. Rudy & I participate too and we are all looking forward to a fun semester.
Trent is doing very well adjusting to all of these "new" things. He even took his nap on his nap mat for the first time.
We are still being very careful and using a lot of hand sanitizer. This all stresses me out a bit, but to see the joy on Grant's face makes it worth it. Grant goes back to the clinic next Monday.

Go Cowboys!

2010-01-09T18:01:00.003-06:00

Grant has been a good fan today. He didn't even take off his helmet to eat lunch. Hope they win!

He seems to be feeling pretty good. It's amazing how well a 3 year old can take pills. I know some adults that wouldn't do as well. ;)

Maintenance Schedule

2010-01-02T16:13:00.003-06:00

Grant finished his 5 days of steroids this morning. His dosing is much less than it was during previous phases of treatment. However, he has gotten the munchies and cravings in the last couple of days. He seems to be feeling pretty good the majority of the time. He has a few bouts of nausea and fatigue throughout the day. He will return to the clinic on Jan. 25th.
The maintenance phase will continue for the remainder of treatment. It is a 12 week schedule that repeats over and over. On the first day, he will go to the clinic for a spinal tap and chemo in his port. He will also begin 5 days of steroids. He will take an oral chemo every night and another one once a week. He will continue to take an antibiotic to prevent infection 3 days a week. And he will take a couple of other drugs to help lessen and treat side effects. He will go the the clinic every 4 weeks for chemo in his port and blood checks.
We are very excited to be in this phase of treatment. But, as you can see, Grant is still having to deal with a lot going on in his body. Of course we know that he will handle it like a champ. Thank you for your continued prayers. God is good and continues to take care of all of us and provide for us in miraculous ways.

Back to Business

2009-12-28T20:17:00.003-06:00

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

2009-12-15T19:08:00.002-06:00

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

2009-12-12T21:15:00.004-06:00

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

2009-12-08T07:55:00.002-06:00

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

2009-12-06T16:05:00.003-06:00

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

2009-12-02T19:29:00.006-06:00

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!

2009-11-23T20:31:00.003-06:00

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!

2009-11-19T22:35:00.003-06:00

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

2009-11-16T11:37:00.002-06:00

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.