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.
Saturday, June 26, 2010
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.
Thursday, June 24, 2010
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.
Tuesday, June 22, 2010
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.
Saturday, June 19, 2010
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.
Friday, June 18, 2010
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!
Tuesday, June 15, 2010
We were in the store today and Joshua saw a lady wearing a burka (it's the middle Eastern dress women wear that's all black with the veil covering their entire face and only their eyes are visible). I saw Joshua observing this woman with a look of curiosity and as we walked past her he pointed and exclaimed, "Hey mom! That lady looks just like a Ninja! Do you think she's really a Ninja?" I tried not to laugh out loud with her practically standing in front of us, because Joshua was absolutely correct, she did posses a strong resemblance to the Ninja assassins you see in the movies, although she wasn't doing any aerial flips or throwing death stars. I just smiled and told him she probably was not. He looked at me perplexed and inquired, very matter-of-factly, "Mom, if she's not a Ninja then why is she wearing that?" At the ripe old age of four I figured he probably wasn't ready for a long lesson in world history, a lengthy discussion on the Muslim religion or a debate about how women in some countries are valued less than livestock. The only thing I could think to say was, "I guess that's what she likes to wear." But, by the expression on his little face, I could tell that answer wasn't entirely satisfactory, his gaze was fixed on her until she was out of our view. Joshua doesn't hesitate to speak his mind and most often says the funniest things. We were driving up north a few months ago and there was still snow on the ground. I pointed out the window and said excitedly, "Look Joshie look, there's snow outside." I heard him reply with a huff, "Um, Mom, mines eyes was alweady looking before you told me." One evening when the older kids were all talking loudly on a car ride, Joshua yelled out, "Hello! I do not need noisy kids inside this car!!" I would have to say my favorite red-faced moment was last year when Joshua was three. We were at the store and as we passed by the bras, Joshua had to announce rather boisterously, "Mama those are for yours boooobs!" Then he had to add, with hand gestures, "You got big, big, big ones and I just have yiddow, yiddow tiny ones!" I must say, the surrounding shoppers all got a good laugh.
Thursday, June 10, 2010
Done once again and we get to go home. The minute Joshua got up, he was very anxious and ready to hit the road. I had to tell him that as soon as his lunch tray arrived then we could leave, that way I could give him a perspective on time, otherwise he would be climbing the walls. Joshua and I like to people-watch out the window, since we're up so high we get a great panorama of the valley. Sometimes we see exciting things like firetrucks or ambulances and depending on which side our room is on, we can often spot our own car when it arrives with, as Joshua refers to them, "the kids," and he gets quite tickled. Today the view was even more exhilarating, we caught sight of an emergency helicopter coming in for a landing, Joshua kept his gaze fixed until it took off again. Then the nurse practitioners, Allison and Nicholette, came in to give Joshua his final exam and give us the green light to go. He sat patiently as they listened to his heart and checked him over, but when Allison pressed harder than he liked on his stomach, he yelled out and I could see fire ignite in his eyes. When Allison was ready to check inside his mouth for any developing sores, he refused to open. "No!" he shouted and jumped into my lap. She tried to play with him asking if she could have a lick of his ring-pop he had on his finger, suddenly he threw it, shattering it into a million pieces all over the floor. Now they were both asking him nicely to open his mouth and he buried his face into my chest screaming, "NO! NO! I won't! I won't!" It's possible he just reached his limit on the amount of prodding and poking he could take because I couldn't even persuade him to open his mouth. You would think something so simple shouldn't be so traumatic, but I guess in Joshua's world where he has so little control over the things happening to him, he can still be the boss of whether or not he will open his mouth. Nicholette picked him up off my lap and he screamed out just as loud as he could, opening his mouth of course, so Allison was able to see inside. When Joshua realized what had happened, he was infuriated that the battle was over and he had been defeated. I had to let him sit by himself for a while until he cooled down. Then we finally got to go home.
Wednesday, June 9, 2010
Today was one of the roughest days. Joshua fell asleep at 5pm last night, woke up at 11pm and finally went back to sleep at 2am. Every night because of his i.v. fluids he wakes up constantly to go to the bathroom and I know it really affects his sleep schedule while we're in the hospital, my sleep schedule is pretty much non-existent. I thought just maybe he'd be happy today because he slept-in until 11:30am, but no such luck. I couldn't even gently persuade him to eat any breakfast, which made him even more crabby. Joseph and Nikole came over at noon, but even their presence didn't seem to help as much as I'd hoped, Alex had summer school. This afternoon Joshua was flailing and thrashing around and I attempted to pick him up to calm him. Unfortunately his i.v. cords got caught under the corner edge of the bed and his needle yanked out of his port and he started screaming. The nurse was very displeased because the chemo meds can burn right through a person's skin. Joshua had to have a new i.v. placed in his port, which, including pulling off all the tape, wasn't very enjoyable. Luckily his skin was fine, but this only increased his orneriness. The nurse brought in pictures to share with us of kids with big burns from chemo. Not the kind of thing I was thrilled to see, it's very terrifying to know this stuff is going through your child's veins. I just have to remember that what the cancer could do would be worse. Joshua was more livid than ever he kept saying, "Mom pulled out my needle, not me!!" He was sitting on my lap and suddenly my leg had a warm and wet sensation, I asked him if he just peed on me and he said, "No, it's only water that somebody spilled." I undressed him to change his clothes, then he refused to get dressed. He only sat in the chair with a pillow on his lap, brooding and glowering at everyone. The doctor came in to see him and had to chuckle, he said this is the first time he's seen "streaking" as a side effect of chemo and said that this is definitely one for the medical journals.
Tuesday, June 8, 2010
Check-in time again yesterday on Monday, the hospital is quickly becoming our 2nd home. We went to our appointment at the clinic and Dr Jeff surprised Joshua with a Spiderman Transformer. Joshua was so excited and is finally warming up to the doctor and will actually talk to him now. I guess if flattery doesn't work, bribery is always the next best thing! This round he gets the continuous chemo in his i.v., so he's not allowed to leave the floor, but at least it's a shorter week - 4 days instead of 6. These three particular medicines he's receiving seems to make him especially grouchy, cranky, disagreeable, grumpy, irritable, touchy - take your pick. One minute he's happy as a clam or a bug in a rug, then the next minute a tornado strikes and he's blowing his top. The least little thing can set him off and the worst part is you never know what it will be because it changes from day-to-day and hour-to-hour. Today he wouldn't even leave the room, nothing seemed to please him. I thought it might help if I let him blissfully slumber a little later this morning, but it didn't seem to make a difference. The Child-Life specialist, David, came by to invite him to to do a craft in the playroom and he absolutely would not budge, no amount of persuasion could convince him. When we're in-patient, I spend a great deal of my time just sitting with him on my lap while he watches TV, plays a game or hugs my neck. Our nurse today was Chris, when he came in Joshua kept giving him dirty looks and glaring at him. He wouldn't wouldn't answer any questions or speak a word to him. One thing you should know about Joshua is that he has a memory like an elephant, especially if you made him mad and got on his bad side. When Chris finally asked Joshua why he wouldn't talk to him, Joshua said, "I'm not talkin' to you cuz I'm mad at you cuz you frowed sumting at me!!" The funny thing is this particular incident Joshua is referring to transpired over a month ago when Chris was our nurse the very first time. Joshua was ignoring him while he was trying to talk to him, so Chris tried to get his attention by tossing a small cap at him, needless to say Joshua turned from Dr Jekyll to Mr Hyde and it took me quite a while to calm him down again. Chris felt really bad and has apologised several times since, but apparently Joshua is still harboring a grudge and hasn't let it go.
Sunday, June 6, 2010
I took Joshua to church today, everyone was surprised to see him and wanted to know how he was doing. He acted very shy around people at first and wouldn't go to primary by himself, he wanted me to stay with him so he could sit on my lap. All the kids kept turning back and looking at him, it made him a little uneasy, but he loosened up and participated in the sharing time activity. After church Joshua announced he was hungry and wanted to go to Home Town Buffet for dinner. For the sake of everyone's waistlines, I try not to make going to buffets a very regular occurrence, so it's been a while since we've been there, if were up to the kids they'd eat there everyday. Being that our ward ended at 5pm, everyone was good and hungry. Since Joshua just recently lost his hair I guess it's more noticeable to me the look in people's eyes and the frequent glances as we walk by. Young kids tend to just stand and gaze wide-eyed, then you hear their parents whispering quickly at them not to stare. It doesn't necessarily bother me, it's just a little odd to go from blending in as one of the crowd to suddenly being noticed. Joshua didn't seem to notice the glances and stares, he was only interested in all the food. I think if he was older he might feel uncomfortable and want to wear a hat everywhere we go or even stay home and not want to go out, but he's comfortable with himself and I'm glad of that.
Saturday, June 5, 2010
There is a program I signed the kids up with called Hopekids. They schedule monthly activities for families that are free or low cost. It's for kids with cancer or other serious illnesses and the nicest thing is that it includes the siblings. It also includes the parents, but in my case only one parent participates in anything involving an activity with the kids. Today was our first event to attend, a trip to the theater to see the latest and greatest and final installment of the Shrek franchise. I don't think I had the opportunity to see last episode, so I'm wasn't sure what number this one was. We got off to a rough start because Joshua wasn't very thrilled to see the movie after his experience with the McDonald's toy. In the car on the way to the theater he kept frowning with him arms folded and saying, "I hate Shrek!" While walking in, he saw the movie posters and kept pointed saying he wanted to see this movie or that one. They gave the kids a voucher to get a free kid-sized popcorn, candy and drink and then we got settled into our seats. This is the first time in a long time I've been to the movie theater with the kids. Joshua has always been a little too squirmy and wiggly and would never sit still, so I haven't exactly felt like paying to chase him around a theater when I can chase after him at home for free. Once the movie started Joshua really enjoyed the show and laughed the whole way through, it was very funny. When the movie ended we were in the lobby and the kids saw a big poster of Shrek, they pointed at it saying, "Look Josh! Wasn't that a funny movie?" Joshua looked up and scowled, "I hate Shrek!!"
Friday, June 4, 2010
I never knew we lived so close to an actual lake, there are several in fact. I've always been under the impression that the closest lake was hours and hours away. I was surprised to see that Sahuaro Lake is only a 20-30 min drive just north-east of Mesa. I remember hearing stories from my mother about her tubing in the Salt River or swimming at the lake when she was young, but in our many, many trips to Arizona as a kid I don't ever recall visiting a lake. A friend from our ward invited the kids to go for BBQ and a swim at Sahuaro Lake. Joshua was feeling better, so he and I tagged along to get out of the house for a while. I try to do other activities with all the kids besides sit around the hospital or sit around the house. The weather is only in the low 100's now, it's starting to warm-up enough for swimming. Joshua had his Power Ranger hat to protect his little fuzzy head from the sun, but we lathered on half the bottle of sunscreen anyway for good measure. I know from first hand experience how bad a sunburn hurts, so I can't imagine how much worse it would feel to sunburn your entire scalp and we don't plan on finding out. The kids enjoyed swimming and were excited to cool off, but for me, the lake doesn't have the same ambiance as the beach. Growing up in Southern California that's the one thing I miss the most, the beaches - Mmmm...the smell of the sea air, the salty water, walks on the pier, ocean sunsets, but not so much the seagulls stealing your food, the sand caked in your swim suit, sand all over everything in your car or the sand tracked throughout your house. Joshua told me to stay close to him because he was looking out for the sharks - perhaps too much Discovery channel??
Thursday, June 3, 2010
We went for Joshua's check-up today and his blood counts were all very low. His eyes were starting to have dark circles around them and as you can see from the photo he was starting to look slightly coneheaded. To remedy this a blood transfusion was needed or he would not be ready to receive his next round of chemo. Staying on schedule with his regimen is important because the doctors don't want to give the cancer any chances to begin growing again. Our choices were to be admitted and get it done today or come back tomorrow on Friday to do it. I figured since we were already here, we chose to just do it today. Joshua had to have his port accessed and then they did what they call a type and cross so they could order the blood. The numbing cream did it's job and he didn't cry when the nurse put in the needle. His room wasn't ready yet, so we were given a voucher worth $5 to take him to the cafeteria and get him some lunch, also when we have to stay at the hospital they give me a pin that entitles us to a 20% discount. Nikole came with me to Joshua's appointment, so she got to hang out with us the whole day and it turned into a long day. It was nice Joshua wasn't connected to an i.v. yet, so we didn't have a pole to drag around with us.
Joshua's appetite comes and goes so I never know what he'll eat, also the chemo causes his likes and dislikes to change. He has funny quirks about eating sometimes, for instance, he started liking Happy Meals at McDonald's because he can get juice and apples with his cheeseburger. He doesn't like french fries anymore, he used to like them when he was younger, but suddenly one day he decided he hated them. The last time we went to McDonalds, though, it turned out to be an "Un" Happy Meal, he didn't like the Shrek toy that was included, so he wouldn't eat any of the food. He also loves pancakes, but when he eats them the server must adhere to a strict system. The succulent rounds must be cut into squares and placed on one side of the plate with the syrup carefully drizzled on the other side. The community of pancake squares is not allowed to co-mingle with the pool of syrup until just moments before consuming, any prior co-mingling causes the breakfast to become null and void. One square at a time is placed onto the fork and then, and only then, the morsel is permitted to bathe in the golden sweetness.
At the cafeteria Joshua decided he wanted a cheeseburger and they serve a great burger, fry and drink special here. The cheeseburger comes on the plate with fries on one side and lettuce, tomato and an onion slice on the other. I should have known better by now, because when Joshua saw the the lettuce and fries on the plate touching against his burger he got upset no longer wanted "that" burger, he insisted on having a new one. At this point you can't reason with him, if I try it will only escalate the situation, so I simply picked up the plate off our table, took it out of his view around the corner where the spoons and forks were, placed the offending cheeseburger solo onto a new plate and returned to the table with the "new" one. He was perfectly content and proceeded to eat nearly the whole thing, which made him very happy and me ever happier.
Once we checked in his room, the transfusion took several hours to complete and then we got to go home. His appointment started at 10am and by the time we left it was 9:30pm. A long day indeed.
Wednesday, June 2, 2010
In trying to figure out how to make giving Joshua his shots less traumatic, I switched from evenings to mid-mornings. Either way it's not easy to be required to intentionally inflict pain on your small child (that's the way it's supposed to be). On Saturday I let him pick out a new toy. He had his mind set on a Spiderman plug-and-play video game that he had seen previously. I wasn't too thrilled about his choice because I knew he would become board with it quickly and it wasn't really worth what it cost, I'm sure most toys these days are not worth what they cost. But, with Joshua I can't just tell him "No, I don't like that and pick something else," because then he'll want it even more. Gentle persuasion always works best with him. So we put the game in the basket and instead of immediately going to the check-out, we continued looking. He looked through the isle of the cool boy toys containing all the super-hero, action-packed and transforming figures and nothing peaked his interest as much as the Spiderman game. Then he saw it! I think it must have been like in the movies where the lights get dim, the one thing suddenly glows like it's being lit with rays strait from Heaven and all of the angels are singing in one accord. It was a Power Ranger Dino Mega Zord! This was a toy he had not seen at the other Walmart location. If you have not kept current on your Power Rangers, then you cannot fully comprehend the excitement at that moment of a 4 year old boy. This Zord is pretty impressive, a tall robot-like creature that could be taken apart and made into five separate animals and then reassembled back into the Dino Mega Zord and there's even a small sword. The game lost all it's desirability instantly, I was glad. What was even more exciting was when we discovered that there were other pieces - Dino Rangers - that we could get to add to the Zord to make it even taller and more impressive. It took going to 2 different Walmarts, but I found all four parts. I told Joshua he could pick one each day if he promised he wouldn't scream and hit when he got his shot. Monday he was so thrilled about the toy, he hardly flinched for his shot. Tuesday and Wednesday went the about the same, it was nice to see him so happy. This was an excellent plan because by Thursday Joshua was holding up the last toy and said, "Mom, I'm already waiting, can you hurry up and give me my shot?"