Monster Trucks

July 30, 2011

Tonight we actually had a chance to get out of the house! Every year we usually make it to the county fair, but didn't think it was going to fit into our plans this year. Well one of the members of the fair commitee works at the real estate office next to my dad's office and said that he was able to get us admission to the fair as well as admission to the monster truck show. They were able to put us in the hospitality suite, so that Drew was away from the crowd and we had our own private deck to sit on and watch the show. Best of all, we actually got to take a ride on one of the monster trucks! We had a great time and Drew loved it! Thank you so much to those who made it happen!

Treatment Delayed & Hearing

July 27, 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.

Blake & Drew got together to play.
They were quick to pull out their "light sabers" for a sword fight!

Enjoying Home

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.

Quick Hospital Trip & Hair

July 21, 2011

Yesterday our home health nurse came to do Drew's chemo at home and draw labs. We got the lab results back that afternoon and his platelets were low again, so they told us to come down in the morning for another platelet transfusion. We made the trip back down this morning and it was our first official visit to the "day hospital". This is where they do the outpatient chemo treatments and other outpatient treatments like these transfusions. Drew did really well there today. It may have been the different environment that helped. Instead of having to get into a hospital bed, we sat in a reclining chair with his own blanket and he never even had to take his shoes off. We left the house around 8:30am and were home by 1:30pm, which we were all very thrilled about! I don't think we've had a day that short down there since this all started.

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.

Gift Cards

I thought of a few other gift cards that the Ames family could use if you're looking for a way to help. They have a Potbelly that is within walking distance from the hospital. They like to go there for lunch during their stays at the hospital. McDonalds is right in the hospital so they eat there too. Jewel Osco is where they fill Drew's prescriptions. If you'd like to send them a gift card please email me at helpingdrew@yahoo.com and I will let you know where to send those.

Thank you!

Debbie Snyder
(Drew's Aunt)

Breakin' Outta this Joint

July 19, 2011

We were able to come home today! Hopefully Drew can get a good night's rest and will be feeling even better in the morning. Our home health nurse will come tomorrow to again check his bloodwork and he has another chemo that she can actually just do here at the house. We are hoping that this one won't be too hard on him since it is just one medication. It sure would be nice to see him come around and start feeling well for a little while because we know that next week will start all over again with another intense round of inpatient chemo.

Still at the Hospital

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.

On Saturday, Drew had his first of what will probably be many blood transfusions.

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.

We found a duck game that he liked.

Here he is painting a model car that we put together.

Now we are just waiting for his neutrophil count to start to come up and hopefully we can go home tomorrow.

Week 2, Home Health & Back to the Hospital

July 13, 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!

Brian and Drew with their footballs.

July 14, 2011

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".

July 15, 2011

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.

Gas Cards

Thank you to everyone for your support, kind words and prayers for Drew. The Ames family appreciates all the help and for your donations so far as the medical bills have already started coming in. I just wanted to let everyone know that another way you can help the family is by sending them gas cards! They will be taking many trips back and forth to the hospital throughout the next year or so. If you are interested in giving a gas card please email me at helpingdrew@yahoo.com and I will let you know where to send those!

Thanks so much,
Debbie Snyder
(Drew's Aunt)

Brief Update

I just wanted to update everyone and let you know that Drew spiked a fever last night and was taken to the hospital. He was admitted and will be there for at least 48 hours. Dayna will send out an update as soon as she gets a chance. Stay tuned...

-Debbie
(Drew's Aunt)

Chemo Day 5 and Home!

July 10, 2011

Day 5 in the hospital was just miserable. Drew was feeling really sick and was so sick and tired of being there.

This is how we spent a lot of the day just to get out of the room and walk the halls. Since he was feeling so sick, he didn't want to walk or ride in the wagon and only wanted Randy to carry him. Good thing Randy is strong because that's not an easy task.

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!

July 11, 2011

First full day home was rough. Drew was still throwing up a lot and didn't have much energy or appetite. The worst part is trying to get him to take his medication. There is no reasoning with him. We used to bribe him with candy or some other treat to get it down, but with him being so naseous, absolutely nothing works because he doesn't want anything. The home health nurse came today to give him an injection that he needed and show us how to do it. She will be able to come and draw labs at home and even give some of his chemo. She was really good and will be an excellent fit for Drew.

July 12, 2011

Second day home was a little better. Drew had a little more energy and a little more of an appetite. He actually wanted mac n cheese pizza from CiCi's and ate 1 and 1/2 pieces! Earlier he ate some mac n cheese, cheerios, goldfish, cheese crackers and cheetos. That's some diet, huh?! But at least he's eating.

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.

Days 3 and 4 of Chemo

Friday, July 8, 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.

Since I went home again for the night, Brooke was able to come back with me to spend the day and visit with Drew. She spent a lot of time in the playroom painting pictures and learning about how Drew's port works and about why we are here. The cast of Disney's Beauty and the Beast, which is in town, came and did a short performance of the play which she really enjoyed also.

After not eating a thing yesterday and even rejecting his fruit snacks, which those of you who know Drew, know that before the bag is even fully opened he has the whole thing dumped into his mouth, he actually ate a couple of pieces of fruit and wanted Cheetos!

My mom and Randy's mom were home watching the other 2 kids, so they brought Dallin and the baby down for a quick visit and to pick Brooke up to bring her home. I hadn't told Drew that they were coming just in case he was asleep and missed them, I didn't want him to be upset. I was trying to get him to take a nap when they got here, so they didn't come in the room and were waiting outside the door and Drew sat up and said, "I hear Dallin!" He recognized his little brothers voice even in a strange place amid all the commotion and chaos and was so excited. His eyes then filled with tears, but he didn't make a sound and I know it made him think about wanting to be at home all together again.

A visit from Tyler, Natalie and Brooke

Disney's Beauty and the Beast

Last night Drew did not want me to leave and this is how he fell asleep. That's my arm he's hugging so tight.

Saturday, July 9, 2011

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!

Drew was allowing me to take a bunch of pictures of him and he kept saying "cheese!" He wanted to look at the picture after it was taken and when he saw this one with Randy being silly behind him he thought that was pretty funny! He got a good laugh!

Day 1 and 2 of Chemo

Wednesday, July 6, 2011

Today we started chemo. It was a long day. We arrived at the hospital early this morning at 8:30am. We got checked in to the clinic and they had to access his port for treatment. It is just a matter of putting a special needle into the catheter and securing it in place, but it was still very traumatic. After all, the site is still pretty tender from just having had the port put in less than a week ago. I just had surgery 2 weeks ago and if someone came near my incision with a needle, I would kick them too!

We were then taken to the procedure suite for Drew to be sedated because he had to be put under general anesthesia again because the first part of his chemo needed to be put in his spinal fluid through another lumbar puncture (spinal tap). Since he was going to be under, they also wanted to get a baseline ECG and audiogram. Some of the side effects of certain chemo drugs can effect the heart and hearing, so they monitor things very closely and adjust dosage accordingly if needed. He didn't wake up from all that until after 3pm and we were then admitted and got his next chemo meds started at 7pm. Since this medication can effect the kidneys, we were then told that while this med is running over the next 12 hours, he would need to get up and urinate every 2 hours. So from 7pm to 7am, all night long, every 2 hours he had to be woken up and taken to the bathroom!

Watching TV

Drew hadn't eaten all day so after he woke up he had some saltine crackers for a snack. After chowing those down he quickly said, "I want chocolate milk and a hot dog!" So that is what he got!

Notice in this sign the things that Drew dislikes... vital signs! The nurses figured that out real quick after being kicked, punched and scratched so many times!

The view of the city from the parking lot as I left the hospital and headed home to spend the night.

Drew picked out a toy from the treasure box to give to Brooke. She was so excited to get it!

Thursday, July 7, 2011

I actually went home overnight to be with the kids and to be able to feed the baby overnight. Randy stayed with Drew and needless to say, none of us got much sleep. Drew has been nauseous and vomiting today and hasn't wanted to get up and around much, but he is handling it like a champ. He is staying entertained playing games in bed. His ipad came today and hopefully we can get some games up and running on it for him soon. They are trying to adjust his antinausea meds and hopefully that will help. They will start his next round of meds at 7pm tonight which will run over the next 3 days.

Here is Drew doing a silly face for the camera! He picked out this Foosball game from the playroom!

Update

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.