Sunday, July 31, 2011
Thursday, July 28, 2011
No inpatient chemo today, counts weren't high enough. However, we did get a few things accomplished.
Drew was due for another hearing test before starting this next round of chemo to make sure the meds hadn't affected his hearing last time. The last audiology test to get a baseline was done under anesthesia because we knew there was no way he would cooperate to get it done. Well this time audiology wanted to try to see if they could do the hearing test with him awake to avoid having to have him under anesthesia for so long each time. I had my doubts, but was willing to let them try (because believe me, if he's not going to cooperate, they get the picture real fast). They made his appointment for first thing in the morning at 8am. It was nice and quiet in the hospital still and we were the only ones there in audiology. We went in the room and he wasn't happy at first when she had to actually put things in his ears, but after that part was done he calmed down quickly and totally cooperated for the rest of the test and did great! He was even laughing and playing and having a good time with it. His hearing was perfect and it felt like a big accomplishment.
After we were done with audiology, we went to the clinic to have labs drawn to see if his counts were okay for chemo. His ANC (absolute neutrophil count) was still too low to start his next round of intense inpatient chemo, but since his platelets were okay we were still able to do the lumbar puncture where he gets chemo in his spine. That meant he needed anesthesia today, but without having to do the hearing test while under too, it was a very quick procedure. He woke up well and we were able to go home then.
We will have labs drawn again on Sunday and if things are okay, we will go back on Monday for the next inpatient round. In the meantime, we will continue to enjoy the next couple of days at home while Drew is feeling good.
They were quick to pull out their "light sabers" for a sword fight!
Tuesday, July 26, 2011
The last couple of days have been going really well. Drew has been feeling pretty good for the last 4 days or so and has been up and active and even eating! His labs yesterday showed that his white blood cell count is still really low, so that might delay starting our next round of chemo which is suppossed to start tomorrow. We will still head downtown and they will recheck things in the morning before getting started. If his counts are still too low then we will come home and probably have another week off before starting the next round.
Since we actually have a minute of down time today, I just wanted to make sure I took the opportunity to thank everyone for everything they have done and continue to do for us. We are truly blessed to have such a wonderful and supportive circle of friends and family that care so much about Drew and our family and we thank you from the bottom of our hearts.
Friday, July 22, 2011
Last week, when Drew was still in the hospital, I was making the trip back and forth at night to go home to feed the baby and Randy was staying with Drew. On Tuesday morning when I got back to the hospital, I laid down on the bed with Drew. He sat up to talk to me and there all over his pillow was his hair. They tell you about the hair loss and you know it is going to happen, but it literally did overnight. I know it is just hair and it will grow back, but it's such an emotional thing and feels like it makes such a public statement about what you're going through whether you're ready to share it or not. We've talked with him about what is happening with his hair and he sure doesn't seem to mind at this point. He was laying back on me today in the chair at the hospital and when he got up I told him it looked like a cat had been laying on me and he thought that was pretty funny. At one point, he kept wiping his face (the hair just seemed to really be everywhere today) and he said, "it's like there's spider webs all over my face!" We've always kept his hair pretty short and he's always been really good about getting his haircuts, but his hair was actually a little longer now because we couldn't cut it too short around his scar until it was healed. Now that things are pretty well healed, we thought it would be more comfortable to give him a nice buzz cut, so Debbie came over with the clippers.
Thursday, July 21, 2011
Wednesday, July 20, 2011
Monday, July 18, 2011
I hesitated with the title of this post because I think this may be a recurring theme throughout this next year of treatment.
While chemotherapy destroys rapidly dividing cancer cells, it unfortunately also destroys rapidly dividing healthy cells as well. It effects the lining of the GI tract and hair follicles which is why it can cause nausea, vomiting and diarrhea and hair loss. It also effects the rapidly dividing blood cell lines which include the red blood cells, platelets and neutrophils (specific infection fighting white blood cells). When the red blood cells and hemoglobin (a protein that helps the blood carry oxygen) are low, a transfusion of packed red blood cells can be given to replace them. When platelets (cell fragments whose main function is to form a clot to prevent prolonged bleeding) are low, a platelet transfusion can be given. As far as the neutrophils go, a medication is given by injection after each round of chemo to help stimulate the growth of neutrophils, but it just takes time for the body to actually respond on it's own.
Yesterday he received a platelet transfusion. He has been without a fever all day yesterday and today and is finally starting to feel better. We got up and went to the play room a lot today.
Now we are just waiting for his neutrophil count to start to come up and hopefully we can go home tomorrow.
Saturday, July 16, 2011
Today we started Week 2 of treatment, so again we were up early and headed back downtown before 7am. Drew was still feeling pretty bad and vomited about 5 minutes into our drive. We got him cleaned up and since he was feeling nauseous, I was hoping that he wouldn't be asking for food or anything to drink. He's not allowed to eat or drink on these mornings because he has to be sedated for the spinal treatments. He was okay in the car, but after getting to the hospital and vomiting 3 or 4 times, he started asking for water. And by asking I mean begging, crying and screaming and then just pleading with us nonstop for a drink of water. Once the hitting, kicking and scratching started, they moved us up in the schedule and got him done.
Since he was having such a hard time keeping anything down, they were contemplating keeping him hospitalized overnight and starting IV nutrition. He had lost 3.5lbs over the first week (which is 10% of his body weight). Randy and I just cringed at the thought of having to make him stay in the hospital again, but of course want to make sure he is safe and properly cared for. Luckily we were able to make a plan to have home health come to the house and get him started on IV fluids overnight and then to start IV nutrition at home tomorrow. Since we are leaving his port accessed, that means we will also be able to do his medications IV too.
After Drew's treatment, we went back up to the clinic to see his doctor and while we were in the waiting room, we saw some friends of ours from church. Not exactly the place you expect to run into someone you know. These family friends of ours went through this same experience 8 years ago when their then 5 year old son Brian was diagnosed with a brain tumor. He also had surgery and treatment that lasted 17 months and was now just coming in for his annual check up. What a support they have been to us. Brian was here at the same hospital with the same doctors and team that we are working with. For the last year, Randy has actually been Brian's Sunday School teacher at church also. Drew sat quietly and listened as we visited and talked about Brian's experience and watched as he and his mom said hi to all the nurses that they knew. I think he felt comforted to know that someone we know had been here too. He then carefully eyed Brian as he started digging through the treasure box of toys that was in the room and pulled out a football. Next thing I knew, Drew was up and digging through the treasure box himself (after rejecting almost every toy that was presented to him earlier) in search of a football. He found one!
Things have been going much smoother with Drew's medications since we are able to give them through IV. He still gets upset when we have to give them because the saline that is used to flush his line gives him a really bad taste in his mouth.
Our home health nurse came again to help us get things set up to start Drew's IV nutrition tonight. She is really good and Drew actually warmed up to her and was smiling and laughing with her. Here she is showing him his very own special pump that is used to give him his "muscle milk".
This morning started out great. It was Randy's birthday. Drew got his IV nutrition overnight, hadn't vomited since noon the day before, actually ate a muffin and some hard boiled egg and was up and playing a little bit. Then around 1pm he was acting really tired and just wanted to be held. He started acting really cranky and around 4pm we noticed that he was feeling a little warm. When you leave the hospital while undergoing chemotherapy, you are given very specific guidelines as far as what to watch for and a fever is one of them. If he has a fever of 100.5F twice in 24 hours or a fever of 101F once, then we are to go to the hospital. The concerns is that if their white blood cell count is low (which is what is expected 7-10 days after receiving a round of chemo) and they get any sort of infection it could be really serious. Well around 4pm when we took his temp it was 99.4F, then 100.3F. Then around 7pm when we rechecked it, his temp was 101.2F, so back to the hospital we went. They drew blood to check his white count and to do blood cultures to check for any infection. His white count was low, specifically the absolute neutrophil count (ANC), so he was admitted and started on IV antibiotics. Now we just wait and make sure the fever is coming down and nothing is growing on the cultures and make sure his ANC is coming up and then we can go home, but that could take a while.
Thanks so much,
Wednesday, July 13, 2011
We knew exactly how long each medicine had to run and were counting down the minutes til we could leave. We had the bags packed and out in the car and as soon as he was disconnected we were out. We hadn't mentioned going home too much just in case something were to come up we didn't want Drew to be upset, so when I told him we were going home, I don't think he believed me at first. We made it down to the lobby and he was still very quiet as if he was wondering where we were taking him now. It wasn't until we were actually outside that I got a reaction from him and told him to yell, "Yea!" and this is what he did!
This has been his bed the last couple of days on the living room floor in front of the TV. He said he wanted another piece of pizza and then got some blackberries out of the fridge and laid down. I went to check on him and this is what I found. I think he got one blackberry down.
Week 1 done. Tomorrow starts week 2 and we head back down for another round of chemo in his spine, but should only be there for the day and then get to come home.
Saturday, July 9, 2011
Today was a little bit better of a day. Drew was actually feeling up to getting out of bed and went to the play room a couple of times. His Uncle Brian and Aunt Heather came to visit with his cousins Tyler and Natalie which helped to lift his spirits.
Again, today has been a rough day. Drew doesn't have any appetite at all, but at least hasn't been vomiting quite as much. The second anti nausea medication that they added makes him so tired, but he fights sleeping, so he's just very cranky. Anytime a doctor or nurse even just walks in the room today, he's crying and screaming and then when they try to get near him it's a fight to get anything done. When he does finally fall asleep, they try to get everything done then. They have learned and are very quiet and almost tiptoe around like not wanting to wake the sleeping bear!
Thursday, July 7, 2011
Drew picked out a toy from the treasure box to give to Brooke. She was so excited to get it!
Thursday, July 7, 2011
Monday, July 4, 2011
On Thursday, June 30, 2011, Drew again underwent surgery to have his portacath placed. The catheter is placed under the skin near his left shoulder and will be where he receives his treatments and will allow for blood draws. They also completed his workup with a CT scan and spinal tap. We received the results of those tests that night and were filled with joy and gratitude to learn that all tests came back negative and there was no evidence that the cancer has spread.
We didn't take any pictures that day. It was a long, hard day, but Drew was so happy to be able to go home that afternoon and not have to stay in the hospital overnight. I never thought I could be so grateful to just be home and together as a family for 5 full days. On Wednesday, July 6, 2011, we begin treatment.