Wednesday, July 29, 2009

Light the Night

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

Tuesday, July 28, 2009

He made it!

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

Friday, July 24, 2009

Much Improved

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

Tuesday, July 21, 2009

The Lord is my strength and my song!

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

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

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

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

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

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

Friday, July 17, 2009


Today Grant got another dose of chemo and a blood transfusion. We were at the clinic for about 5.5 hours. This particular chemo drug seems to make Grant hyper. But, when he is getting the blood, that makes him very lethargic. He usually just lays on the couch watching a movie. He did that today after he made his daddy a birthday card and birthday hat! He is still taking chemo at home, but does not go back to the clinic until next Wed.

Thursday, July 16, 2009

Blood Tomorrow

Today was a rough day at the clinic...for me anyway. Things didn't go as smoothly as we hoped and the boys were a little hard to get along with. Grant had to get his noodle reaccessed, which didn't go nearly as well with mom as it did with dad. :) Grant wanted to do the opposite of what was asked of him. He did get another CBC today and will definitely be getting blood tomorrow. His other numbers had gone up and looked better today.

Wednesday, July 15, 2009

Suuuuper Grant!

It was back to the clinic yesterday. Rudy took the day off to take Grant to the clinic b/c I needed to work. He said that Grant did really well and did little more than say "ouch" when he got his noodle. When we went today, everyone kept saying how great he did yesterday. I think Rudy would like to take the credit, but I had a little talk with Grant before he went. I told him to be extra good for Daddy at the clinic. So, I'm sure that's why he did so great. ;)
His numbers are going down and his ANC was already down to the high risk level. This was to be expected so no surprises. We are anticipating that Grant will need a blood transfusion on Friday. He will get another CBC when he goes for treatment tomorrow.
About the pictures: The capes the boys are wearing were a gift and the boys think they are so fun. Capes make them run really fast! They wore them to the clinic one day and were a hit. We are so thankful for all the kind gestures, meals, and especially prayers we are receiving. We appreciate each one!
Daddy is giving Grant a haircut in the backyard. We bought clippers for home b/c I am cutting Rudy's hair about once a week. What hair Grant does have was getting long and frizzy and needed to be cut. Grant thought it was funny.
Maribel is the nurse that takes Grant's vitals at the clinic every day that we go. She is such a sweet lady and is so great with Grant. When she isn't working with another patient, she comes to the playroom and plays with the kids. Grant loves her and talks about her a lot. All of the nurses really put a lot of effort into knowing the patients.

Friday, July 10, 2009

How do we get rid of this wookemia?

We drove by a McDonalds and Grant said he wanted to play on that playground. So I explained to him, as I have before, that he could not play on those playgrounds right now. They were dirty and he might get sick b/c he has leukemia. He thought for a second and asked if he could play on it when he got all better. When I said yes, he went back to thinking for a while. Then he said, with much determination, "How do we get rid of this wookemia?" It was so cute! That's why we've been going to the clinic all week!
Today went very smoothly and he got to leave his noodle at the clinic. The only thing he didn't like was having to take the "stickys" off. But, it was ok b/c if it meant he got to go swimming. We've already done that and plan to do more this weekend b/c he has to get his noodle again on Tuesday.
Grant has handled all the chemo this week very well. One of the nurses came out when we were still in the waiting room this morning and was telling us that the doctor that saw him yesterday was commenting on how well he was doing to everyone in the clinic. She was so surprised that he had so much chemo this week and still felt so good.

Wednesday, July 8, 2009

Back to the Clinic

Grant has started treatment again. Yesterday, he went to the clinic and got his port accessed. One of the drugs that he got requires him to be "perfectly" hydrated. This means that they started him on fluids as soon as he got his noodle. Then, we had to wait for him to get to a specific level of hydration. He was receiving fluids and we were pushing juice. And then we have to get him to urinate in a urinal so they can test it. We had to get him to do this 3 times before we were at the right level. Then he gets his chemo through the port for an hour. THEN, he has to be hydrated for another 4 hours after that. He also received another drug through his port. It was a long day. We got there at 9 and left at 5.
It started a little rough b/c Grant was out of practice getting his port accessed. I think it was a combination of being scared and just figuring out what makes people react. He through a huge fit and put up a big fight. It took 4 of us to get his port accessed. When we got home, we had a talk about it. He told me it didn't hurt, he just didn't want a poke. He is going to act like a big boy next time. He will not have to be accessed again until next week, b/c he is bringing his noodle home with him. We went back today and will go tomorrow and Friday as well. At those visits, he is getting a 15 min. IV push. But, in reality, we are there about 2 hours. He had a CBC yesterday and all of his counts came back really really good.

Sunday, July 5, 2009


Our neighborhood has a fireworks show that we can walk to. It's really nice and Grant loves fireworks. As you can see, Trent spent a lot of his time hiding in Daddy's arms. He did end up watching them toward the end. The fireworks show was pretty much the extent of our 4th of July celebration. Hope you all had a good 4th.

Thursday, July 2, 2009

School Visit

Grant and Trent got to go for a visit to see their Mother's Day Out class today. I gave Grant the choice of going first thing in the morning to play on the playground with them or go have lunch with them. He chose lunch. I told him that maybe we could go get McDonald's to take for lunch. He did not want McDonald's. He wanted mommy to pack his lunch. It was kind of cute. He wanted everything exactly how he used to do it. So, he took a peanut butter and honey sandwich, goldfish and grapes. He also took the treats that we had planned to take on his birthday.
He had such a good time. While all the other kids were choosing their seats, he was just standing there holding his lunch box. They said "come sit down, sit by me, come eat by me." Grant said "I have to wait for my mom to clean the table." He enjoyed it in his own special Grant way. He wasn't very talkative, but he was listening and watching everyone else. He sounded so grown up when he would talk. When we were leaving, I asked him if he had fun at school today and he got the biggest grin on his face and said Yeeees!
Then we went swimming and both Grant and Trent are little fish. They really love the water and are doing a great job progressing and learning new things. We are just glad this is something Grant can still do.

Wednesday, July 1, 2009

Great Numbers!

Grant went to the clinic for a CBC today. The nurses were able to make an exception to the rules for Grant. If he is just getting a CBC, they are supposed to take the blood from a vein in his arm. But last time they had to do that, it was very traumatic. Grant was screaming and I couldn't really hold him still. He was asking for them to do it in his tummy/port. So, today they just accessed his port and took the blood from there. It went much better. We were just checking his numbers to make sure they were on their way up so that he could start chemo again on Tuesday. We also needed to know if he needed any transfusions. His numbers looked amazing!! God is so good to answer our prayers and we appreciate all of you being prayer warriors for Grant. His ANC was 140 on Friday and he got 2 doses of chemo. Today it was 3390!! His other numbers were up too.
The doctor who saw him today said we could have started his next round of chemo today b/c he had already made numbers. However, I told the doctor that Grant had been complaining of pain when he urinated for the last 24 hours. They took a urine sample and ran some tests. The results they got in the office showed blood in his urine. There are a few reasons this could have happened, so they are sending a sample off for more testing. He may have to go on an antibiotic at home for a few days. But, this should not prevent him from starting chemo next Tuesday.
As a side note, Grant also went to the podiatrist today. I told him her name (Dr. Crane) so when she came in the room I said "there's Dr. ...." and waited for him to finish. He thought for a second and said "Dr. Foot!". :) Pretty funny. She said she could see improvement from his last visit and he got new orthodics for his shoes. She commented on the fact that he was wearing flip flops which are terrible for him, no support. But, I had dressed him in flip flops b/c everytime he goes to the clinic he has to take his shoes off to be weighed and measured. We just can't win. ;)