Friday, October 15, 2010

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.

Wednesday, June 30, 2010

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.

Saturday, June 26, 2010

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.

Thursday, June 24, 2010

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.

Tuesday, June 22, 2010

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.


Saturday, June 19, 2010

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.

Friday, June 18, 2010

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!



Tuesday, June 15, 2010

Kids say the darnest things...


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

Home again



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

Notable New side effect

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

Chemo - Round 3


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

Sunday dinner

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

Shrek 4 or 5?? I lost track!




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

Sahuaro Lake




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

Food 4 Thought


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

The Power of the Zord


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?"

Saturday, May 29, 2010

Home again...


This morning a lady brought by a therapy dog. The breed was a cross between a golden retriever and a poodle, which made for one large-sized, fluffy canine. Joshua was scared because the dog was more than twice his size and probably weighed three times as much. He wouldn't get off the bed, but Nikole convinced him to pet the dog. I don't understand why the therapy dogs are so big, the three that we've seen since coming to the hospital are all very big dogs, yet the trainers always say they are gentle breeds. Why is it we never see a therapy chihuahua?? Or even a pug??


We got to go home today, but we had to wait until late afternoon. Joshua is given several doses of a protective medication after the chemotherapy is completed. He tolerated this round of chemo better than the last. On the way home we stopped at Walmart to pick up a few things. While we were strolling through the store Joshua spotted an interesting looking man who was covered in tattoos, his earlobes hung down to his shoulders with these disc objects pierced through them, his hair was done up into a wild looking mohawk and his apparel was not something that any mother would want her child wearing in public. Joshua is not the type a child that hesitates to voice his opinion, as we walked past this fellow Joshua pointed to him and exclaimed, "Hey mom! Look at that weird guy, he looks really weird!!" I responded to his comment by saying "uh, huh" and tried to hurry him past the man and change the subject. But that didn't satisfy Joshua, he stopped, still pointing and now patting my side, he almost shouted, "Ma-om, you're not looking! I told you to look at that weird guy over there." Of course I was now obligated to look at this man. "Look right there, see mom." Otherwise Joshua would continue on until I did. "See, I told you. Doesn't that guy look so weird?" I glanced and smiled and by the way the man smiled back at me I'm sure he was amused at Joshua's reaction to him.

Friday, May 28, 2010

Dr. Seuss Day



Joseph was finished with school yesterday and Alex and Nikole finished at noon, so Sam brought them to hang out with Joshua. He had a lot of fun playing with them in the playroom and it's nice that he's in a good mood today. Joshua has just one more night of chemo tonight, then we get to go home tomorrow for another week, with the next check-in tentatively set for June 7th.
I didn't know that there's a small theater on the third floor of the children's hospital. This afternoon we were invited to attend a Dr.Seuss production put on by a group from Mesa Community College (The college just happens to be conveniently located across the street from the hospital). It was a delightful musical of "Horton Hears A Who." With all the singing, dancing, colorful costumes and comical dialogue, it was quite entertaining. Joshua enjoyed it very much, and the big kids liked it too. After the show we ordered dinner from the cafeteria, it was fun to spend the afternoon with the kids. The music therapist came by and did music with all my rowdy kids in our room, she was a real trouper because all 4 noisy kiddos together in a confined space can prove to be a challenge to have them all pay attention. They had a fun day and Joshua actually went to bed early tonight.

Thursday, May 27, 2010

Pizza & cupcakes



Joshua woke up at 7am this morning soaking wet and I figured he'd go back to sleep after we changed him and his bedding, no, he was up for the day. I didn't know if I was quite ready to deal with more crankiness this early, but he was actually in better spirits today. He ate his breakfast, played some games and when we went to the playroom he played with the volunteer, she thought he was very cute, his silly personality really shone through. At 2pm there was a pizza & cupcake party in the playroom to celebrate the birthday of one of the benefactors and former volunteers for the hospital. He is also a cancer survivor and turned 90 yrs old today. Joshua's oncologist Dr. Jeff came into the room and sat at the table next to Josh. Joshua turned and gave him a dirty look, got up, pushed his i.v. and moved to another table. When I asked him what happened he said, "I saw the Doctor and I moved away from him!" I asked him why he didn't say "Hi," and he said, "I just don't want to hear about mustard anymore!" (The joke with the mustard is from first time when we were in the hospital Joshua was eating a hot dog and the doctor asked him why he wasn't having mustard with it and Joshua said he hated mustard. So when the doctor saw him a few other times he asked him if he loved mustard yet, and Joshua said, "No, I still hate it!") I joked with the doctor I must be doing something wrong because Joshua has been happy the whole day even after getting up early. The big kids came to hang out after school and I saved them each a slice of pizza and a cupcake, they were excited for that. Happiness lasted until about 5pm when Joshua finally snapped, but then quickly fell asleep. His usual two hour nap continued on until 11pm, when he finally woke up and said he was hungry. I thought he'd be awake all night, but he went back to sleep at - you guessed it - 1am.

Wednesday, May 26, 2010

Tues & Wed


Based on the time we checked in Monday night, Joshua is receiving his chemo during the night starting around 3am and will get it for 5 consecutive days. He's receiving 2 different chemo meds one after the other and then some mdes to counter side effects and nausea. He doesn't seem to have any nausea so far, which is good. Tuesday his mood was all over the board but he was cranky a good portion of the day. The doctor said that being irritable is one of the side effects, unfortunately there is no medication to counter act that. He fell asleep around 5pm then woke up at 7:30pm and stayed awake until 1am. His sleeping patterns are really off when we're in the hospital. I get even less sleep because his i.v. fluids are increased at night when receiving the chemo, so he's up every 1-2hrs.


Wednesday was especially difficult, even though he slept in till 10am, he was even more irritable than the day before. He refused to eat any breakfast, which I think didn't help his mood. The least little thing would set him off and cause him to go into a rage. When I was opening a Kit-Kat and a piece of it broke off taking it out of the package, he screamed, threw it across the room and didn't want it anymore. It seemed like I could do nothing to appease him, he just kept saying he wanted to go home. We pretty much stayed in our room the whole day and I spent most of my time sitting with him in the chair or laying next to him on his bed. Another late afternoon nap, but he was a little happier when he woke up this time. I like to see him happier, but these 1am bedtimes are crazy.

Monday, May 24, 2010

Chemo - 2nd round


After a little more than a week at home, the time has come to for us check back into the hospital for round number 2 of chemotherapy. Depending on his blood counts, we will be admitted today or tomorrow. Joshua wasn't happy at the prospect of going back to the hospital, so we went to WalMart so he could pick out a toy for his prize for getting his shots all week long. He also found Transformer PJ's that he really wanted, so that was his incentive for going back to the hospital. We went to the doctor's office and everything was a go for today, so we went home to pack our bags. This time we should only be there until Saturday. On the way to the hospital Nikole wanted to say a prayer and when she asked for help for Joshua to do what his doctors say, Joshua piped up, "No I won't!"


We got all checked-in and settled in our room, it was after 8pm. Next we had to go to the treatment room to put Joshua's i.v. in his port. This was a little scary for him, but I assured him it wouldn't hurt as bad as an i.v. in his arm. They put numbing cream on his chest, but he still felt it when the needle went in and it made him cry. His pain was rewarded with a trip to the toy closet and, as you can see from the photos, he found a super cool G.I. Joe Ninja Sword set (that even makes sounds when you wave it around). By 10pm he was hungry and wanted to eat dinner, since the kitchen service was closed, I got a voucher to take to the cafeteria. When I returned Joshua was sitting in his bed with a handful of hair, there was hair on the floor and he had a sizable bald spot on the top of his head. He said, "Look mama, my hair's coming off. The germs are eating my hair." I thought he'd be more freaked out when his hair fell out, but he seemed fine when I explained to him that the medicine caused his hair to come out, but it would grow back. He started getting fussy when he said it was making him all scratchy, so I gave him a shower and scrubbed away most of his hair. He looked in the mirror and thought his head looked funny because it was all fuzzy. The reality of his disease really set in tonight, now he looks like a cancer patient.

Sunday, May 23, 2010

Weekend


Since Joshua was still feeling good, we decided that this weekend was the perfect opportunity to go and visit cousin Matt, his wife Amanda and their two kids Kasity and Parker. Joshua said, "I know Kasity can't wait to see me!" He just adores her, all the kids do. The last time we saw them was before the baby was born, so they were excited to go visit. Baby Parker is 2 months old now and everyone agrees he is the most adorable. We were glad to have had the chance to visit.


It's nice to have a little normalcy and not have to think too much about Joshua's illness when we're not in the hospital. Except for having to give him his shot Saturday night, Joshua had a lot of fun. We ate brunch together at the Aquarius buffet, which was very delicious, and Joshua ate like a little piglet. After brunch we went for a walk by the river, then we hung out at Matt's house the rest of the afternoon. On the way home there was a some sort of accident, on the section of road that was two lanes, of course, so we had to park for almost an hour. We never did see what happened, but we finally made it home safe and sound.



Friday, May 21, 2010

First week home



This week proved to be challenging. We had a doctor's appt on Tuesday and Joshua did not want to go, he refused to get dressed. I had to put him in the car and dress him after we arrived. They just pricked his finger for his blood test and he didn't even flinch. The technician let him see the machine that does the analysis and let him push the button, this was fascinating to him. I was instructed to begin his Neupogen shots in the evening. The biggest challenge is giving the shots. No one really likes to have shots, especially kids. So how would you like it if you are required to poke your child with a needle on a daily basis? The first shot was difficult, Joshua screamed and cried and went into a frenzy. When Joshua throws a tantrum he picks up whatever is near him and throws it at whoever is closest to him, so everyone scatters. When I tried to pick him up he told me he hated me, punched me in the back a tried to pull my hair. It took almost an hour for him to finally settle down. You can't reason with a hysterical child, I waited until he settled down before I talked to him or could comfort him. The following nights proved just as difficult. I was prescribed a cream to numb his skin, but the medicine still burns. After the injections, we all had to endure Joshua's rage. Thursday night I just held him and went outside, with him punching my back, until he calmed down. Daytime we had fun watching movies, going shopping and to the park with all the kids.
After his Dr appt on Friday, I took Joshua to Target, a friend had given us a gift card. I let Joshua pick out a special toy for being brave and getting his shots all week. He is a very discerning shopper, he examined all of the toys carefully. After some time he finally settled on a Batman in a transforming vehicle that shot lasers. Too cool! Hoping this helped, shot time in the evening seemed a little less traumatic.

Saturday, May 15, 2010

Home at last!


Yea! we got to go home today! Everything looks good so far. Joshua only has the injections everyday and one oral prescription Bactrim, that he will take every Fri, Sat and Sun while we are at home. The Bactrim is to prevent a type of pneumonia that cancer patients are susceptible to. I told Sam we'd be discharged around noon, so he got here at 8:30am and wondered why we're not ready to go yet. Hmm... Nikole stayed with me to get everything ready and Sam returned later with the boys to carry everything to the car.
Home shows the signs of mother being away - groceries depleted, laundry mountains, dishes set up in booby-traps in the cupboards, but it is so nice to be home. We went to the grocery store and I asked Joshua if he wanted me to buy him Dibs, the chocolate covered ice cream bites that he loved to get at the hospital cafeteria. Upon seeing them he shouted, "No! I hate Dibs!" I guess they were too much of a reminder. When we arrived home the home health nurse was there to show me how to administer the Neupogen. Joshua was not very happy about getting a shot.

Friday, May 14, 2010

Friday


With the first round of chemo completed during the night, Joshua was able to be disconnected from his i.v. this morning and very much enjoyed walking around without having a pole following him. Today was spent relaxing, the doctors observed him and we made all the necessary preparations to go home tomorrow. The chance to go home is something to look forward to, Saturday will be our 19th day we've been here. With the chemo I didn't notice too many side of the effects, he just had a few complaints about pain in his jaw again, but not so much that it prevented him from eating. He was happy, as well as I, that he didn't have to use the bathroom so frequently. After breakfast we had a bit of a scare. Joshua was sitting on my lap watching TV while I was talking with the hospital administrator and he suddenly had a nose bleed. It freaked him out because it bled a lot, it was like someone turned on a faucet. The administrator ran to get the nurses. It was hard to get Joshua to sit still, lean his head back and relax. It finally stopped bleeding, but not before my clothes, his bed and the floor were splattered with blood. The doctor was not sure if we should classify this as a side effect or if the cause was just the dry air. Either way it was still unsettling.
I was joking about needing a massage and the social worker arranged for a free half hour massage at the hospital. It felt so good, but I needed more like 2-3 hours.
Joshua will have to have Neupogen injections when we are home to help build his white blood cells. The medication was scheduled to be shipped directly to the house. I told Sam when it arrived it needed to be refrigerated. Sam called me in a panic and told me the box was delivered, but it was too big to fit in the fridge and asked what he should do. I then couldn't believe I had to ask him, "Did you open the box??"

Thursday, May 13, 2010

(day 3) -or- the Mac&Cheese conundrum

Another night of frequently retrieving the urinal, I've gotten used to sleeping with one ear open and as soon as I hear Joshua tossing and turning I get up. Morning came too early once again. Waffles and bacon were brought in for breakfast today because pancakes were not listed on the menu. Upon lifting up the lid on the dish, I was immediately notified by my patient that waffles were absolutely unacceptable, so I had to call down to the kitchen and order pancakes, you'd think I should have known better by now. They gave Joshua medication for nausea, it must be working because his appetite was a little better today. Besides some nausea and a few complaints about his jaw aching, he doesn't seem to have too many side effects yet.
After his afternoon nap, Joshua was hungry and had some Frosted Flakes, then decided he wanted his mac-n-cheese that he hadn't eaten from lunch, his other favorite food besides pancakes and bacon. I warmed it up and when I gave it to him, instead of the look of glee I had expected, he glowered at me, "I don't want that plastic spoon!" Silly mom then removed the disposable plastic spoon from the bowl and replaced it with his cool Transformer spoon we brought from home. My smile was met with a big huff followed by a scowl, "Not that spoon, that's the one I ate my cereal with! I want a metal spoon." I usually save back a spoon from his meal tray for when he wants to eat something later, but all the silverware had been collected earlier. The metal spoon from home was too big, of course, so he didn't want that one either. The nice lady that cleans our room, in a effort to solve our dilemma, found a metal spoon in the nurses' lounge. I cleaned it and dried the prized spoon, but the joy I felt for this small victory vanished quickly as I was met with a frown, yet again. When I inquired as to what could possibly be wrong now, I was told, "I don't want this macaroni anymore, I want a new one!" I'm sure by this time most parents, in a regular home setting, would contemplate pulling one's hair out and simply sending the child outside without any macaroni. But, what can you do when he's stuck in a hospital bed hooked up to an i.v.? So, I took the unacceptable bowl of pasta to the snack area mixed a little milk and cream cheese in it, reheated it, brought it back and with my fingers crossed I presented it. The grimace on his face proved that I was still missing something, I almost begged and cried as to what it could possibly be now? His big brown eyes looked up at me and he said, "I want you to feed me and do airplane." Hallelujah! For just a brief moment, the planets aligned, the earth was in the proper orbit and Joshua ate his mac-n-cheese.

Wednesday, May 12, 2010

And Chemo begins... (day 2)

The doctors all stopped by this morning to check Joshua's progress, nobody was surprised he was still sleeping after his all night party. The pulmonary doctor had very encouraging news, he said there is a good chance that Joshua's surgery can be done laparoscopically. That's what we are all going to pray for right now, it would be a such blessing. He explained that 10 yrs ago this never would have been an option, but the advances in technology has made this a definite possibility. I didn't let Joshua sleep in too late this morning because I really wasn't looking forward to doing an all-nighter again, if I let him he would probably sleep past noon. When he woke up needing to use the bathroom at 9:30, I kept him up. His usual breakfast of pancakes and bacon was waiting for him. Every morning since we've been here he always wants pancakes, bacon and chocolate milk, of course, he wants me to feed him. His doesn't seem to have as much of an appetite this morning, but he ate some.

We're invited to a party. There's a little girl named Clara and today was her last day of chemotherapy. She's 3yrs old and had a eye tumor (retinal blastoma) and had to have her right eye removed. The first time Joshua and I met her and her mom in the play room was the day he wanted to bring his dart gun with him. Under the circumstances (I had sudden visions of horror as I imagined him shooting her in the other eye!) I convinced him that bringing the gun along wasn't such a good idea. Everyone sang to Clara, there were doughnuts and she got the hit the big gong. It was an exciting day for her and her family. Joshua will have a party when he's all finished.

Let the side effects begin...we went back to our room and Joshua was already complaining about his jaw aching and nausea, shortly thereafter, he starting throwing-up. My poor little guy. No sooner did we change his bedding and clothes and my clothes, he threw up again. We just mostly hung out in our room the rest of the day. After a while he wanted something to eat, so I fixed him some chicken noodle soup and he kept it down, then all he wanted was orange sherbet and his favorite Dibs ice cream bites. His doctor said it is common for kids undergoing chemo to crave salty, sweet or spicy foods. He went to bed at midnight, little earlier than 2am.

And Chemo begins... (day 1)



We spent most of Tuesday anticipating, expecting, eagerly awaiting, and dreading for the chemotherapy to begin. There was the 24hr urine collection, blood tests, processing the prescription by the pharmacy and all the various other checks and balances done to make sure that Joshua was ready. Although I'm not so sure if anyone truly can be "ready" to have multiple toxins running through their veins, but by all medical standards, at 9:30pm Joshua was finally all set to go.

When the chemo drugs are administered the nurses are required to wear a gown, mask and gloves. Each drug comes in special protective i.v. bag, as no one wants to risk contact with the skin because it absorbs quickly. I was also instructed to wear gloves when handling Joshua's container of urine and helping him. It's quite unnerving to see the level of caution used with these medications, and yet it is the same medications being pumped through my child's veins.

Joshua was given a dose of steroids just before the first chemo drug and his reaction to the steroids was as if he drank a pot of coffee. Suddenly he was wide awake, not sleepy at all and then announced he was hungry. At home he's always liked a snack before bed, but tonight at 10pm he was eating chicken strips dipped in honey, then ice cream. The night slowly wore on as we played games, watched T.V. and my frequent trips to the bathroom to grab his urinal. With chemo the i.v. fluids are increased to help flush it through his system and his system wants to flush every hour and a half to two hours. At 1:00am he declared he was hungry, yet once again, and this time he craved graham crackers with strawberry jelly and apple juice. I couldn't believe he was still awake because I was having trouble keeping my own eyes open. Finally at 2:00am he went to sleep. It was not a restful night, though, with his frequent urination it seemed like every time I closed my eyes that it was time to get up again. I felt like I only slept in 10 minute intervals. The sun appeared on the horizon far too quickly.

Monday, May 10, 2010

Chemotheapy



The Chemotherapy schedule follows a induction roadmap approved by the National Children's Oncology Group labeled the AEWS0031 Interval Compression in Ewing Sarcoma Regimen B. It will consist of the use of five different drugs all with various side effects. He will also be administered other medications to lessen some of those side effects. His therapy sessions will be administered in the hospital and last between 4 to 5 days each time and alternate between the first three drugs, then the remaining two drugs the next treatment. He will have a week to ten day break in between sessions and if he's feeling well enough and his blood counts are good, he can come home.
Chemo drugs being used:
(1) Vincristine
(2) Cytoxan
(3) Doxorubicin
(4) Ifosfamide
(5) Etoposide
**Common Side Effects:
Nausea, Vomiting, Stomach Pain, Constipation, Alopecia (hair loss), Anorexia, Jaw Pain, Numbness, Tingling, Weakness, Immunosuppression, Cardiac Arrhythmias, Bone Pain, Confusion, Loss of Reflexes.
**Rare Side Effects:
Vocal Cord Paralysis, Seizures, Blurred Vision, Pulmonary Fibrosis, Bladder Fibrosis, Secondary Malignancy, Anaphylaxis, Allergic Reactions, Neuropathy.
(Pretty scary stuff!!)

Treatment Plan


Joshua's Oncologist is Dr Jeffery Hanrahan, and although I have met with quite a few other doctors since we've been here, he is the one we see every day. Monday afternoon as I sat in the conference room across from the doctor, nurse and the social worker, I could feel a knot in the pit of my stomach. Now that the diagnosis has been confirmed, it's time to move forward with the treatment plan, unfortunately with cancer there are not a vast array of options to choose from.

First the doctor explained the diagnosis and gave me a report showing me how this type of cancer was genetically identified. Next we went over the treatment schedule, Joshua's treatments are expected to last between 7-8 months. Each type of cancer has what they call a protocol or roadmap that is followed that dictates the combination of drugs that will be used, the doses and duration. He is starting with chemotherapy, after about 3-4 months he will have surgery to remove the tumor along with part of his lung, and then finish with more chemotherapy. During the chemo he will be in the hospital, but he will be able to go home in between treatments if he is feeling well enough and has no fever.

I inquired about why we couldn't just do surgery right away, as I'm sure some of you might have this same question. The doctor explained that historically when surgery was done immediately on this type of cancer the long term success rate was diminished and, in some cases, it actually caused the cancer to spread to other organs, the bones or even caused brain tumors. So, doing surgery first is obviously something the doctors will not even consider.

Next the doctor went over the five chemotherapy drugs and all the side effects. This was the hardest part to hear because the drugs are basically all poisons that will poison the cancer and prevent it from spreading and growing any further and in the process poison my child. At this point, it was very difficult to hold back the tears any longer, knowing what Joshua has to go through is not an easy thing to swallow. Basically I have to let them make my child sick in order to make him well.

Monday


Monday morning was spent anticipating the consultation with the Doctor. After the usual breakfast of pancakes and bacon, we went to the play room and made sand art pictures. I helped Joshua with the first one to show him how to peel off the stickers one by one and then sprinkle on the colored sands until our giraffe was done. The second picture he decided to do all by himself. He carefully peeled off the first sticker and sprinkled on orange sand, then he carefully peeled off the next sticker and sprinkled more orange sand, he repeated this process with each subsequent sticker until he got to the last two, then he decided to switch to black sand and his picture was complete. It didn't quite resemble the rhinoceros that it was supposed to be, but that makes it all the more fun.

During the consultation Joshua was entertaining the nurses and the rest of the staff driving his remote control car up and down the halls, he got to pick it out from the toy closet on Saturday. There is a special toy closet here that kids can choose a new toy from when they have to endure a painful procedure, it's filled with all sorts of cool toys donated to the hospital. Joshua had to have his bandages from his surgery replaced, which consisted of peeling off the very large, very sticky tape on his chest - pain that was eased by choosing a remote control car. The doctors and nurses are quite taken by his personality and all think he's quite adorable.

Sunday, May 9, 2010

Timeline - First two weeks




4/27/2010 - Admitted to Hospital. CT SCAN THORAX (of chest) - Confirmed tumor in right lower lobe of lung.
4/29/2010 - LUNG TISSUE BIOPSY - Preliminary report shows abnormal cells. Received Blessing
4/30/2010 - BLOOD TRANSFUSION (1 Unit) - Blood tests show Joshua to be very Anemic with higher levels of white blood cells and lower red count. After transfusion his levels improve and he regains his appetite.
5/01/2010 - CT SCAN ABDOMEN/PELVIS - Checking for other tumors, report comes back clean.
5/06/2010 - DIAGNOSIS CONFIRMED - EWING SARCOMA/PRIMITIVE NEUROECTODERMAL TUMOR - Related to Bone Cancer.
5/07/2010 - POWER PORT IMPLANTED, BONE and BONE MARROW BIOPSY, BONE SCAN - I.V. can now be placed in his Port rather than through his tiny veins in his arms, nice for Joshua because he's had to have 4 I.V.'s put in. Bone Marrow and Bone Scan reports come back clean.
5/08/2010 - ECHO CARDIOGRAM - Thoroughly checks the heart, his heart is strong.
5/10/2010 - Doctor's consultation to explain treatment plan.
5/11/2010 - CHEMOTHERAPY begins.

Kind of Cancer

Joshua was diagnosed with Ewings Sarcoma. It is usually found in the bone, so they did a bone marrow biopsy and bone scan on friday and so far it has come back clean, but I don't think all the results have come back yet.

Donations

Hi,

This is Patty, I am Joshua's Aunt, I set up this blog for Vicki. This has been a very hard time for the Mataipule Family. A few years ago Sam (Joshua's dad) was diagnosed with congestive heart failure and had to have a pacemaker/defibrillator put in. He still suffers from cardio myopathy and hasn't been able to work since, so, Vicki's been working to support the family. A few weeks before Joshua was diagnosed the company that Vicki had been working for was dissolved leaving them without work and owing the Mataipule's a large sum of money. Vicki was looking for another job when Joshua was diagnosed, but she has now been staying with him at the hospital every night instead. Needless to say they are struggling, at the moment, so I set up a link here so anyone who is able can donate money to help them out with their needs. It's thru paypal so it's very easy. Thanks everyone!






Mother's Day



This year Mother's Day took on a whole new meaning. The sacrifices that mom's make for their children can sure be intensified at times. I think the hardest part about being a mother is to have to watch your precious child in pain or go through a traumatic ordeal and feel powerless to help them. I'm sure we've all experienced this on various levels at one time or another.
My cousin Joyce came to the hospital to stay with Joshua to enable me to go home for a while, since Sunday was an easy day of just hanging out and playing. She brought the kids with her because they wanted to surprise me and bring a card and a few small gifts including a chocolate rose.
Upon arriving home I could see the dishes were disheveled in the cupboards, the laundry was piling up and the signs of not having mother home were apparent, but trivial things don't seem to matter right now. Staying away so long been difficult on everyone. Nikole really wanted me to go to church with them today to come hear the Primary singing special songs for their mothers. I wasn't sure if i could handle seeing everyone, as I'm sure the news about Joshua is just starting to spread, I'm still in shock myself. Our ward is really great and has been very supportive. I've pretty much been teary eyed the whole day and did cry when I tried to give an update in Releif Society. The Primary sang beautifully and it was nice to feel the love and warmth from so many.

Wednesday, May 5, 2010

Address

If you would like to send anything to Joshua, here is the address at the hospital.
Cardon Children's Hospital
Attn: Joshua Mataipule RM# P706
1400 S. Dobson Rd.
Mesa, AZ 85202

Monday, May 3, 2010

Joshua's Diagnosis

Today Joshua was diagnosed with Cancer. He has a 4x8 centimeter in his lung.

Friday, April 30, 2010

Cardon Children's Medical Center

The hospital where we're staying is the new Children's center attached to Banner Desert in Mesa, it's very nice. We started out on the 5th floor, but then quickly moved up to the 7th floor - Oncology. When you first arrive, you're greeted by waterfall walls, indoor trees and a giant chess and checker board with life-sized pieces. The floors are embedded with little silver butterflies, dragonflies, frogs and lizards, and just around the corner there's a mini-town with trains still under construction.

We have a spacious, private room and bath which includes a mini fridge and flat-screen TV. The satellite stations, video games, internet and on-demand movies are all controlled by the plug in remote or the wireless keyboard. Joshua figured out how everything worked almost immediately. On our floor there's a game room, a toy cabinet, and a snack center fully stocked with drinks, snacks and Popsicles. We can go to the front desk and check out additional movies and video games. There's even a laundry room, but I don't think we're supposed to bring all our laundry from home!! If it wasn't for having to get medical procedures and being poked with needles, you'd almost think we're staying at a vacation resort. As nice as it seems, though, I have informed our Doctor that we will be filing a formal complaint. I told him that there are two things missing that have pretty much ruined the whole ambiance of our experience- (1) Corndogs! and (2) RootBeer! Can you believe you cannot find a single corndog or rootbeer anywhere in this entire hospital?? Outrageous, that's what it is!!

Tuesday, April 27, 2010

Tuesday, April 27 2010 - The day that changed our lives forever.

This date will not soon be forgotten. It is the exact day our lives were turned upside down. I feel like we have all been strapped to a roller coaster and sent on a ride that we can't get off. This is a ride that no one ever wants to take.
Joshua is my spunky 4 1/2 yr old, the youngest of four. I still consider him my baby - and always will! Even though his two older brothers are 11 and 12, he can hold his own and will not hesitate to bop one of them in the nose if they make him mad. Sweet natured, feisty and full of life.

Tuesday morning, I took him to his appointment with the Pediatrician for his regular check-up and informed the Doc that I was becoming concerned about a lingering cough he had. He wasn't exhibiting any other cold or flu symptoms or even a fever, but I did notice that his coughing was becoming more frequent and his appetite seemed to have decreased. Sometimes he would get upset to the point where it would trigger a cough attack causing him to throw up. He coughed a few times for the doctor, his usual dry, barking cough, and I told him I was worried there was something physically wrong going on with Joshua. The Doc wasn't overly concerned, I'm sure he's seen enough mom's with hypochondriac tendencies, but, in his infinite wisdom, decided to send Josh for a chest x-ray. Still sore from the immunizations I postponed going to the lab for the blood draw and went strait to the imaging center. A few hours later came the call that no mother wants to hear, they've discovered a growth in Joshua's right lung. I was instructed to retrieve his x-rays right away and head strait for the hospital. Thoughts of terror go through my mind because this is way more than a simple chronic cough.