Catch-up

O.k. it's been a while since I posted and lots of thing are happening. My laptop burned out and we didn't have internet at home for a while. So, this week I will update and back-track on Joshua's treatments and let everyone know about his upcoming surgery.

Vampire club

I think we are official members of the Vampire club now. Joshua needed another blood transfusion, so we are up to 3 now. We went at 7:30 in the morning to the Outpatient clinic and he was still half asleep. They give him Bendryl before they start and it always makes him drowsy, so he slept through the whole thing. I try not to worry, but it's not easy. Nikole came with me and we just watched t.v. and ate breakfast, I was tempted to fall asleep myself. Four hours later and we were finished. During the month of June a few of the schools participate in a free breakfast and lunch program sponsored by the state and available to any kids under the age of 18. The kids don't get up early enough for breakfast, but when I'm home with Joshua, we go for lunch. It gives the kids something to do. Today was the last day and this week the lunch ladies had asked me about Joshua and his illness. We finished the transfusion just in time to make it for lunch, and when we arrived, the ladies serving the food brought out a present for Joshua. They had all pitched in and put together a gift basket for him and a card. It was very kind of them and we were surprised.

K-mart adventures

On Friday Joshua had lined up all his toys on his tray table and was playing with them. I asked him why the Power Ranger guys all had their heads turned to the side and what they were looking at. He said, "They're not looking at nufing, that's how they was in the package." Ok, I guess that makes perfect sense in the world of a child. Saturday, the day we got to go home again. Joshua was excited because he was all geared up and ready to go to K-mart to see if we could find the red Power Ranger car that he's been looking at on-line. That's practically all he's been talking about for days, he even showed the doctor and all the nurses when they came in. According to the store finder, K-mart is supposed to have them and I sure hope they do. Keeping our fingers crossed we arrived at Big K and made our way to the isle of toys. All of the sudden I heard Joshua scream, turning around I saw him holding the beloved red car of his desires! I bowed down, kissing the ground and offered my praise to the almighty K-mart as he jumped up and down with sheer delight. The look on Joshua's face unexpectedly turned from joy to queasiness, then he said, "Mama my tummy hurts." Without warning the volcano erupted all over the floor and the toy, luckily there was another one on the shelf. The kids were yelling in excitement, "Mom take him to the bathroom, take him to the bathroom!!" Not possessing the knowledge of the direct route to the lavatory, I decided that our best option was to stay put instead of spreading the love throughout the store. Also, I figured the minimum wage earning clerk that will be assigned the arduous cleaning task will greatly appreciate having to only mop one isle. Once Joshua stopped heaving, we quickly left the scene of the crime and made our way to the cashier. With car in hand, we made our hasty departure. Joshua has been lucky that he hasn't thrown up very much during his chemo, this is probably only the third time because he receives anti-nausea meds during treatments. He felt better the rest of the day, I think the Power Ranger car was his best remedy.

Keep Busy Days

I got smart and put the diaper on Joshua Tuesday and Wednesday night after he went to sleep and removed it early in the morning before he was fully conscious and realized he was wearing one. It worked! Wednesday was a better day and he was in a fairly good mood because I made the mistake of looking up online Bandai.com (makers of Power Rangers). So we got to watch the all access 24hr Power Ranger channel for the last 2 days. Joshua discovered there are more parts that can go with his Megazord and he is now consumed with wanting the "red car." In the afternoon too many doctors, nurses and therapists descended on Joshua's room at the same time and he had a sudden attack of sensory overload, becoming frazzled he started screaming. The Physical Therapists are concerned with him getting out of his room and getting more exercise. Nikole and Alex came in the evening and we all went down to the cafeteria for dinner. A change of scenery did Joshua some good and he actually ate his dinner. Thursday was a busy day filled with lots of activities. David from Child-Life stopped by after breakfast with two really cool remote control cars, he and Joshua had a blast driving all around the hospital. At lunchtime Debra, a friend from church, came by to take me for lunch in the cafeteria. Right about then Alex and Nikole showed up and all of us ventured down to the cafeteria together. Joshua was happy and his mood was perky, that's always good, so we were able to have a nice lunch together. When we returned to our room, the PT's had dropped off a peddle-car for Joshua, he could hardly contain his excitement and wanted to zoom down the halls. It was a challenge for the person pushing the i.v. pole (me) to keep up! Being that it was Thursday, the school teacher was ready to take Joshua down to the schoolroom and he was geared up and ready to drive down. Too distracted by the peddle-car, Joshua didn't seem to notice whether I was with him or not, so I opted to stay behind and let him go by himself with the teacher. Miss Craig was very impressed with how bright he is and she had a lot of fun with him.

Chemo - Round 4

Last week we had a meeting with the doctor and some members of the hospital staff. They wanted to discuss some ways we could all assist in making Joshua's hospital stays a little easier on him. Preventing another episode of his needle getting pulled out was the main concern and also they didn't want him just sitting in bed all day long. I suggested that one thing I think would help was if a member of the staff comes in and can see he's upset to have them come back a little later when he's calm. I told them that when he's already cranky or in a bad mood and he's forced to have an exam or his vitals done that it just causes him to become more angry and uncooperative. We got off to a pretty good start Monday. This is our longer week, but Joshua gets the chemo every night instead of continuous, so we can leave the floor and go on adventures during the day. When he gets his chemo it is also accompanied by lots of extra i.v. fluids, this makes it harder on him because he constantly wakes up to go to the bathroom. Last night after wetting the bed twice, the nurse put a diaper on him, the meds build up in his urine and it's not good for his skin, even diluted it can still cause a rash or burn. I had to change the diaper in the night, but I made the mistake of not taking it off before he was fully conscious in the morning. When Joshua woke up and discovered his was wearing a diaper he was highly insulted and infuriated, who wouldn't be, right? He ripped off the unwanted, unsavory attack of his dignity and threw it across the room, then he started huffing and brooding. If I tried to talk to him he just screamed at me, so I backed off to let him cool down. I turned on the t.v. and he looked away in protest, but he slowly started watching the program and soon was smiling and giggling at the show. After a while Joshua turned and saw me watching him, suddenly remembering that he was supposed to be mad, his smile quickly turned to a scowl and he growled at me, then turned the t.v. off. The hospital has several school teachers on staff to help kids keep up with their school work during treatments. We met the teacher, Miss Craig, on a previous visit and she was impressed that Joshua already knew all his shapes, colors, numbers and alphabet. Before we ended up in the hospital I was working with him on writing. Miss Craig came to see Joshua in the afternoon, by then he was playing a video game. He, of course, wouldn't cooperate and let her read to him even though she brought a Spiderman book. Finally, after some gentle persuasion, he permitted me to read him the book. The teacher told me there's a schoolroom set-up with computers and a mini-library on the 5th floor. She realized that trying to work with Joshua in our room with so many distractions is almost impossible. I think also is the fact the our room is like his mini domain and he doesn't like so many people invading his space. So, the plan for Thursday is to see if we can get him out of the room and down to the schoolroom. Joshua has turned into my midnight snacker. He fell asleep in the late afternoon, and woke up at 11pm and wanted to eat, he decided a meat sandwich with orange cheese would tickle his fancy. I saved his turkey sandwich from lunch(Yeah! 5 points for mom!), but of course, it had no cheese (minus 4 points!). They have cheese in the little mini-kitchen on the 7th floor, but it's string cheese, which is unacceptable, so in order to earn back my points, I was instructed to run down to the cafeteria to retrieve 2 slices of cheddar cheese. Upon my speedy return, he gleefully ate his sandwich.

Jumpstreet

We went to another Hopekids activity today. There's a place in Chandler called Jumpstreet, which is a huge indoor trampoline park. Joseph wasn't able to join us because he left for Scout camp early this morning, but I went with the other three kiddos. The trampolines go all the way up the walls, so you can bounce off the walls and jump your heart out without falling off. Needless to say, the kids had a blast. There's a big kid section, a little kid section, dodgeball and blow up climbers and slides. We had two hours, but I think I was out of breath after the first 15 min! Definitely loads of fun and a great workout, we will definitely come back another time with Joseph.

2nd Echo

Joshua went for his 2nd Echo Cardiogram today, which is basically an ultrasound of the heart. Nikole is always my shadow and likes to go with us. The reason for the echo is because the chemotherapy drugs can cause damage to the heart called Cardiotoxicity. As a result of the cardiotoxicity the heart is not able to pump blood through the body as well and if the condition becomes severe enough, it eventually leads to Cardiomyopathy. So basically the all chemo drugs can cause injury to the heart muscle disturbing the function and pumping action and subsequently leading to heart failure, unfortunately there are some kids that end up with permanent heart damage. The good news is that in comparing the first echo to the second one, so far Joshua doesn't show any signs of diminished heart function!