Grant's First Day of School

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

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

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

Answers Please

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

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

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

A Little Better

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

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

Not So Routine

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

Camp Sanguinity 2011

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

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

The Amazing Grant

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

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

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

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

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

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

Thank you Lighthouse!

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

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

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