Change of Plans

Grant went to the clinic yesterday for a lumbar puncture, chemo through his port and a blood transfusion. His loopy pill seemed to hit him harder this time than it has before. He did fine with all of the treatment though. He watched a couple movies, painted, colored, and played games. He also got in a nap while his "noodle was drinking red juice." Dr. Heym was surprised at how much energy he had with his hemoglobin low. He is looking more and more like himself everyday. But, he is still struggling with side effects. He has been vomitting pretty regularly, but it doesn't seem to really bother him. He actually is the most hungry and eats the best right after. He is at least getting better at predicting when it's coming so he can get to the bathroom or a bucket. He has been very restless when he tries to sleep. He almost always wakes up crying from a nap and he doesn't ever no why. He just can't get comfortable.

Next week will not be what we were expecting. Apparently, there is a week break before he starts up treatment again. So, next week he will go to the clinic for a complete blood count (CBC) on Wednesday. If his hemoglobin or platelets are low, he will get a transfusion the end of next week. His ANC has to be above 750 to start treatment on the following Tuesday. His ANC was 140 yesterday, so he has a long way to go.

Grant has gotten to participate in a music class at TCU the last few weekends. Their early childhood development students have partnered with Cook Children's to provide this class for cancer patients. It's been good for Grant to get to do something with other kids.

Trent is doing well. He is trying to say more words and learning new tricks everyday. He wants to do whatever Grant is doing.

Low Blood Counts

Grant went in for some blood tests today. All of his numbers came back pretty low. His platelets were high enough to not need a transfusion but it had dropped significantly since last week. His hemoglobin was low so he will definitely be getting blood on Friday. His ANC was really low, so he is at a very high risk for infection. There is nothing they can do to correct this but wait for it to come up. The best thing we can do is pray. :)

Good Report

We ended up taking Grant into the clinic today to have him seen by a doctor. Dr. Davis checked him and observed him for quite a while. He came to the conclusion that it was probably a side effect from one of the chemo drugs. He said he was not concerned because Grant was showing great strength and good balance. Dr. Davis also tried to get Grant to reveal areas of pain while playing with him and Grant did not say anything hurt. Grant will get another dose of that drug on Friday, so we will see if the pattern repeats.
Grant also had a rough night sleeping last night, so nobody got any sleep. He kept crying, but when I asked him why, he didn't know. We are hoping for a better night tonight.
He will go for an appointment at the clinic on Wednesday just for a blood count. Then he will go for his scheduled appointment on Friday. He doesn't seem to have a lack of energy right now and I don't think he looks pale. He seems to be holding up well.
He has been taking swim lessons last week and this week. He really loves them and is doing a very good job. He is improving each time. Trent is going too and he absolutely loves the water. He has no problem splashing and putting his face in the water. They are having a lot of fun!

Big Church

We had a really great time going to church this morning. We so appreciate the outpouring of love and support we received. Grant was curious about the blood bank bus so we went to check it out. He barely got inside when he stopped and looked at me. The nurse inside the door was wearing a paper gown like they wear at the clinic and it was very crowded with people and "stuff". He talked to the nurse for just a second and was ready to get out of there. We talked about why the bus was there. He will tell you that it was getting some red juice for when his noodle needs to drink it. So innocent.
Grant went to "big church" with us and did pretty well. I only freaked out once when Pastor Nathan asked everyone to gather around and lay hands on us while we prayed. I think I almost hyperventilated about all those people touching us. It's ok Nathan, I forgive you. You had good intentions. ;) About halfway through the service, Grant looked at me and said, "Mama, does big church have pizza?" I have no idea what he thinks we do in "big church". So, then we had to go to Sam's and get pizza for lunch.
I will be calling the clinic first thing in the morning. Grant has been very sensitive to touch since Sat. night. He has complained of pain under his right arm (near his port). He has also complained of pain in his legs and arms when touched. This has never been mentioned as a possibility, so please pray for answers when I speak to the doctor in the morning.

Blood Donors

Alliance Community Fellowship will be hosting a blood drive and bake sale for Grant and another little girl this weekend. Grant gets credits for blood donations made in his name and then we can use those credits when he needs blood products. Grant gets his blood from Carter Blood Care. Many other organizations will pass credits on to Carter if blood is given for Grant, specifically Oklahoma Blood Institute in OKC and MD Anderson & St. Luke's Hospital in the Houston area. These organizations will just need to know his name and that he is being treated at Cook Children's in Fort Worth. If you give to Carter Blood Care, you can just give them his sponsor # SPON048145. We are not soliciting your donations, but just wanted to pass on this information to those that wanted it. We appreciate all that is being done for us, especially Grant.

Fun Times

Grant had a clinic visit this morning. He had to have chemo in his port, a spinal tap, and a shot in both legs. He got another loopy pill and is starting to get the hang of things. The spinal tap went better this time than last week. He just has to sit cross-legged on the bed and lay over a pillow on his lap. They have a tv in the room where we play a movie. Today, he just layed on the pillow. He said "ouch" when Dr. Heym put the needle in his back and that was it. He fussed a few times b/c he was ready to sit up and the nurse was holding him down, but then he would just lay back down on the pillow. It was really amazing. The hardest part of the whole process is the laying on his back for 30 min. after the procedure. They did the shots in his legs while he was having to lay flat. He wasn't able to see what they were doing. There were 2 nurses, so they did the shots at the same time. Again, he just said "ouch" when they stuck him with the needles, but the chemo is painful when it is going in. He cried while that was happening and then he was fine. About 45 min. later he went to the bathroom and saw the band aids on his legs. He asked, "What are those? Why do I have those on my legs?" He did not remember the shots at all. We have wondered how well that loopy pill works b/c he still has conversations with us and seems "normal". But, he can't walk straight and, apparently, he doesn't remember things. He is an amazing little boy! I think his loopy pill lasted all day. ;) He was being so silly and funny today. We had a lot of fun.
Grant had his blood counts checked today. His platelets looked good. His ANC (measures risk of infection) was low at 310, so he is at a high risk of infection right now. There is nothing they can do for this low number. His body has to make these itself. His red blood count was 8.1. They usually do a transfusion at 8. He will have another appointment next week to check his blood counts. He will probably have to have blood on Friday when he has an appointment for another lumbar puncture and chemo. He is not having to take medication at home this week. Yay!

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.