More Like Grant

We continue to see more little pieces of Grant come back. One of the biggest things to me is at bedtime. We always say "Night Night...Love You" and Grant whispers it back. But, since he was in the hospital, he has not said anything back. It was so sad to me not to hear him say that b/c he always had such a sleepy grin on his face. Well, he has started saying it again this week and it has been so sweet. There are so many little things like that, even his attitude has improved this week. He is really slimming down b/c he still doesn't have much appetite. But, somehow, still has lots of energy. He has a great time swimming (at private pools). He can swim as long as we don't have to bring his noodle home.
Trent is still doing a great job adapting to new locations. He is struggling a little with being left all the time though. He stays pretty close to me if I am up walking around. He's afraid I am going to leave him. He is such a sweety! Rudy is actually rocking him to sleep right now, which we never do. He was having a really hard time going to sleep.
It has been difficult for me to juggle my time. I feel like all of my time with the boys is spent driving Trent somewhere and taking Grant to the clinic. If we aren't at the clinic, I am trying to get some work done and make up for time lost. Again, it is just a struggle trying to find that 'new normal'.

Whew!

Another week down! It is really crazy when we have to be at the clinic 4 days in one week. But, again, Grant handled everything so well. He did get a blood transfusion today. We didn't realize that he had gotten pale, until he started getting the blood. His face got rosy and his lips got much more pink before the transfusion was even complete. His white blood count is down, so he is at a higher risk for infection. He got to leave his noodle at the clinic today after "it got a drink of red juice." He does not have to go back until Wednesday of next week. We will have a couple of "slow" weeks and then he will have to go 4 days a week again. On Wednesday he will get another spinal tap, a shot in both legs, and a dose of chemo. in his port. It's not going to be a fun day. Thankfully, he doesn't hold a grudge. When we were sitting in the waiting room yesterday, a nurse walked by. He looked at me and said, "there goes my friend!" She just happened to be the same nurse that held him into position for his spinal tap.

Grant absolutely hates having to take off the bandages. His chest is raw from all the bandages they put on and off. However, this week, he came in the day after his spinal tap and said, "Mom, can you take this band aid off?" He was so nonchalant, I didn't believe him. I asked if he was sure and he said yes. So, I just peeled it right off his back. He didn't even flinch. I was amazed!

Procedure Day

Today Grant went to the clinic in Grapevine for his procedure. Dr. Heym performed a spinal tap to administer chemo. into his spinal fluid. Grant was completely awake and I was in the room with him the whole time. I KNOW....for those of you who know how sqeamish I am, this was a big leap. I was so busy trying to keep Grant distracted by the movie we had playing, I didn't have time to worry about myself. Grant had gotten an oral "loopy" pill. It made him a little relaxed (he couldn't walk straight), but he was still very aware. The thing he liked the least was the nurse having to hold him in position. Then, he was supposed to lay flat for an hour. Well, that didn't go so well. After hearing us struggle with him for 30 min., Dr. Heym said we could just let him up. And you are thinking...."let him up"? Yes, we were physically having to hold him down for most of that time. He also got his port accessed again for chemo. today and the next 3 days. So, we are "bringing his noodle home with us." He has a short IV that hangs under his shirt and we call it his noodle. He's actually very comfortable with it and makes me a little nervous when he plays with it. He has been showing it to people very proudly.
Grant had his blood counts taken today. Everything looked REALLY good except the hemoglobin (red blood cells). It was already low today and will probably go lower over the next 3 days of treatment. They will check his numbers again on Thursday and he will probably get a blood transfusion on Friday. He has not acted like it's low. He has still had good energy and has not seemed pale. His appetite has been a little better today, but still not good. Dr. Heym said his lack of appetite is expected and not to be concerned.
Grant is extremely smart and has figured out how to play his situation to his advantage. He is really starting to push his limits. Everyone jumped at his every wish for a while and now it's coming back to bite us. We are all having to adjust....again.

Tired & Irritable

All of us are tired and irritable. :) Grant and Trent are antagonizing each other. I think they are competing for attention most of the time. And they get it! We are constantly saying "Graaant" and Treeeent". I think Grant just gets frustrated with his situation and Trent is an easy target to vent on. And Trent just seems like he feels that things are unsure right now. He just seems a little anxious that he doesn't know what is going on. Rudy and I are just flat exhausted. Everything is happening so fast and we are just trying to keep up.
All that being said....things are going great! Grant is still getting outstanding reports from the doctors. He is handling his situation and the chemo. extremely well. He has had a little nausea with this last round. He is fine most of the time, except when he tries to eat. He says he's hungry, but nothing sounds good. He takes one bite of what we give him and says he's done. But, then he's off to play again.
We have moved up his treatments for this week so he will go tomorrow, Wed., Thurs., & Friday. (Yay, no Saturday.) We are doing something a little different with his spinal tap tomorrow. He will not be completely sedated. They will give him an oral relaxer and then numb the site. Please pray that this will go smoothly and he will not be anxious or wiggly. They will also check all of his blood counts and give him blood or platelets if necessary. We are praying that he won't need anything. They said that kids usually need a transfusion by the end of this week. We want to be careful to give God the glory when Grant doesn't need one. :)
Trent got a great report for his 1 year check-up today. He almost got out of getting shots b/c they could be harmful to Grant. Some that he got are live viruses. But, not this time. Dr. Heym okayed him to go ahead and get them. I am so thankful that our pediatricians were aware of this possible danger.
Please continue to pray. Life is pretty chaotic right now and we appreciate all of your prayers!

Happy Birthday Trent!

Trent is ONE! We had a really fun time at the zoo today. Rudy took Grant to the clinic for treatment this morning and then we went to the zoo for Trent's party. The treatments have not seemed to slow Grant down at all this week. We got to have a picnic and cake and see lots of animals. We all had a really good time. I was having to tell myself not to worry and let Grant have fun. We used a lot of hand sanitizer!

Grant has one more treatment tomorrow at the hospital. Then, we will start all over again on Tuesday. He will go Tuesday-Saturday of next week too.

Great Start!

We had a great day at the hospital/clinic. It was extremely long, but was tolerable b/c Grant was in such great spirits. He did really well with his spinal tap procedure. Upon request, they did the anesthesia a little different than last week and it worked much better. He stayed asleep the whole hour after the procedure that he had to lay flat on his back. I woke him by asking him if he was ready for a snack? Of course he was. He immediately started trying to sit up.

Then, we went to the clinic. He had to be without fluids to go under anesthesia for the procedure. But, he had to be REALLY hydrated to be able to receive the chemotherapy treatments today. So, we hit a little snag waiting for him to get hydrated enough to start the chemotherapy. Once he started the chemo., it took 1 hour to administer and then he had to have 4 more hours of hydration. All that said, we left the hospital about 8:30 tonight. We arrived at the hospital at 8:30 this morning. LONG DAY!

Grant did awesome!!! He woke up from the procedure asking to go to the playroom in the clinic. He played all day! He talked to the doctors and nurses and was very friendly. We didn't actually meet with Dr. Heym today, but each time we saw him he said, "What's up Big G?" and that made Grant laugh. He handled the day a lot better than we expected. My mom went with me today, as Rudy needed to get back to work. We have an appointment tomorrow in Grapevine at 3:00 and Friday in F.W. at 7:45. Grant had to take 2 new medicines tonight at home. They are both pills, so that makes things a little difficult, but he managed. One of the drugs today could likely cause nausea. He has not shown any signs and we are praying that he is the exception to the rule. We've already talked about going back to the clinic tomorrow and he has decided to take Larryboy with him. We ask him who he wants to go with him each day and he chooses a different stuffed animal. He thinks that's fun.

Trent got a great report on his behavior today. He stayed with some very dear friends today that were so great to take on such a big, long task. Trent is a special little boy!

The next steps...

Today was a really big day, not so much for Grant, as for Rudy & I. We had to decide whether to stick with the standard treatment plan or put Grant into a study, allowing him to be randomized into either the standard treatment plan or a much more intense treatment plan. After MUCH prayer, consideration, and discussion we were still undecided when we went to talk to Dr. Heym today. Eventually, we decided to put Grant into the study. It only took a few minutes to find out that he had been placed in the more intensive arm of the treatment plan.
What does this mean? Well, he is going to receive some very intensive chemotherapy over the next 8 weeks. He will be given a total of 6 different forms of chemotherapy. This does not include the drugs he will also be taking to help manage the side effects. We will be spending some very long days at the hospital/clinic. Starting tomorrow, Grant will get a spinal tap, 2 drugs over 5 hours through his port, and begin a new oral chemotherapy. He will then have to go Thursday, Friday and Saturday for more treatment. We will repeat this process again next week. If for some reason, he does not respond well or has a lot of trouble with the side effects of the drugs, Dr. Heym or Rudy & I can decide to stop participating in the study at any time. Dr. Heym was very supportive of the study and was glad that we made that choice.
Please continue to pray for us as this is going to be a very busy, tense, and stressful time for all of us. We know that God is in control and that no treatment is better than the power of prayer. Also, please feel free to ask any questions that you have. We try to keep you as informed as we can. But, we have so much information we are trying to process that we may not pass along something that would be helpful.
We are going to celebrate Trent's 1st birthday at the zoo on Friday. Grant is really looking forward to this. He will have to get treatment early that morning and then go to the zoo. But, Dr. Heym said that we should absolutely not cancel.