Tuesday, November 29, 2005
I first would like to thank everyone who sent Joey a birthday card, gift, or called him on his birthday. It REALLY made him feel good. He actually had a great birthday. It seemed like it went on forever to me... He had a "friends" birthday, where Mike took Joey and Johnny with three of Joey's friends to play laser tag. Last week Joey received a birthday card everyday. That made him feel very special. THANK YOU EVERYONE!
We had a great Thanksgiving too. My Aunt Marti (from Michigan), bought us a complete dinner for 10 from Kroger. It was great! My dad picked it up for us about 12 noon, and we were eating my 12:30! We had many invitations to eat with both families, but we didn't want to commit to anything, not knowing how Johnny would be feeling.
Johnny had treatment on Monday of last week, and then a dose of PEG on Wednesday. Monday-Tuesday went really well. Much better than anticipated. He never got sick, and was surprisingly hard to keep down. He wanted to go shopping for a new skateboard and basically do ANYTHING to get out of the house.
Then Wednesday. Johnny had to go last Wednesday to get two shots of Asparaginase (PEG). He had this chemo once before, when he was first diagnosed in May/June. I remember when he got the shots back then. What TCH tries to do is lessen the whole pain/shot experience for the kids. The nurses try and "poke" the kids as little as possible, so when they give the PEG, it takes two nurses to administer the shots at the same time. One shot is given in the thigh muscle in each leg. The reason it is given in a muscle, is because it is so toxic that if given through the port, it could burn the artery. This was the first time I have seen Johnny cry. The nurses counted to "3", and gave the shots at the same time, and then Johnny's eyes got REALLY big, and I could tell that if he could have, he would instinctively pulled away. But we had him pinned. It's not given quickly like a flu shot either. Sure it's over pretty quick, but it probably took about 15-30 seconds. And from what I could tell, each second burned as the PEG entered his muscle.
When Johnny cried, it only lasted the length of the shot, maybe even less. He barely had to wipe his eyes when it was all over. Meanwhile, there was a teenager next to us that was screaming bloody murder over a finger stick. Yes, a finger stick. I wish I was joking. From what I could gather, her port was blocked (like what happened to Johnny), and so they were just going to get blood from her finger instead. She freaked out. Poor thing. Can't say I blame her. As much stuff as these kids go through, I would probably have a melt down myself.
Johnny's legs hurt him for a few days. At the clinic, I put a little package of saltines (2 per package) down on his leg, and he screamed. I mean a real scream, and then said to me "what are you doing?!?!?" I had no idea... He had a hard time walking to the car, but refused to let me carry him or get in a wheel chair.
Then next day was Thanksgiving. It was weird watching the parade without the smell of roasting turkey filling the air. But I have to say, it really was nice not to worry about making everything. I was able to sit with the kids and watch the parade with them. And of course look at the ads for the next day's sales! Johnny still seemed anxious to get out. He was bummed to find out that all of the stores are closed on Holidays. I told him that later in the day we would drop by my mom's house and see everyone. All the kids were excited about that.
We finally got ourselves together and headed to my mom and dad's about 4:30. Johnny played with the train under the tree and then came and laid down on my lap. I asked him if he was ready to go home and he said "yes". Mike took him home and left me and the kids at my parents. Johnny only lasted about 30 minutes...
I woke up Friday morning about 4:00am. I tried to go back to sleep, but all I kept seeing was "while supplies last", going through my mind. I got up and was at Toys R Us at 5:00am. The line was already around the building. I couldn't believe it. I asked person in front of me what time they opened and she told me "6:00"... I stood in line and chatted with everyone for the rest of the time outside, once we were in, it was every man for himself! Luckily, I was able to get all of the kids shopping done and I was home before anyone woke up. Mike didn't even know that I left. I told him we had a conversation before I left, but he had no recollection of it.
Friday and Saturday we all very slowly got the Christmas Tree and a few decorations up. Johnny would have his spurts of energy lasting about 5-10 minutes, and then rest for a few hours. He was asleep about 9:30 each night and sleeping about 12-13 hours at a time. I was glad to see him getting his much needed rest.
Sunday morning Mike was going to take Joey to spend the day with Marci, while he, Liz, and Gordon went surfing. Mike and I got up about 7am, and as we got dressed and down stairs to get ready for the day, Johnny bounded around the corner. Talking up a storm, with boundless energy. Just following us around the house, talking a mile a minute about crazy things, nothing related to the other. Mike asked him why he was up so early and he said "I was up before you, I was waiting for someone to get up. My tummy was talking to me all night long..." Mike said "the steroids have definitely kicked in". Pretty much from that point on, Johnny has been eating non-stop. Sunday night we had tickets to see the play "A Christmas Carol". I took Grace with us, Mike stayed home with Johnny and Sophie. We had AWESOME seats -- 4th row, center. Thank you Jennifer and Allen!
We went to the clinic on Monday (Nov. 28), and as we were driving Johnny asked if he was going to get anymore shots in his legs. I told him no, that the ones he got last week were the last ones like that. I'm not sure if he believed me, because he still had a worried look on his face. Yesterday was another dose of Doxorubicin, and Vincristine. The side effects of this round were more prominent than last week. When we came home he was wiped out. We had Mike's mom, my mom, and Marci over for Joey's birthday dinner. Johnny wanted to be upstairs in bed. I asked him if he needed a Zofran and he said no. I asked if he needed a bucket in case he got sick and he reluctantly said "...okay". I made him take a Zofran. I'm glad I did, because it didn't take to long after that he wanted to come down and join everyone. I carried him because his legs were hurting him from the Vincristine. That's the stuff that makes him walk like Frankenstein. Today, he still has leg pain, and in his jaw as well. It hurts him to sit on anything hard like chairs and floors. Because the drugs have an accumulative effect, next week could get worse. Luckily, it only lasts a few days, and then he is back to himself.
Tonight when he was sitting on Mike's lap looking at surfboards on the Internet, he said he wished that life was like a DVD player, then he could fast forward past this stuff. Me too...
We met one of his friends from camp on Monday too. Cadence had his port taken out in August, and was on maintenance. He found out in October that he had a relapse in his left testicle. It was taken out, and now he is getting ready for a bone marrow transplant. If he makes it to transplant (he has a 20% chance), and it is successful, he has to be in isolation for SIX MONTHS (at this point his chances jump up to 50%)! Before you get too worried, Cadence has T-Cell ALL. It is a difficult one, he actually had to get radiation in his protocol. Another little boy, Chaise, who is only 5, is due for transplant in four days. I have been reading what he is going through, and I just wanted everyone to keep these kids in their thoughts and prayers too. They have to go through so much!
Monday, November 21, 2005
He fell off the wagon today. Well, actually, we pushed him. His counts were really good, and his ANC was up to 1000 so he was finally able to get rolling on the delayed intensification (DI) phase of his chemotherapy. Now that he has started, he will get treatment the next three weeks regardless of what his counts do. He will then get at least a week off to rest, and then start another three week round of even stronger chemo. After that he will go into three + years of maintenance. It's funny, most kids would freak out when told they would have to take a handful of pills every night, go to the hospital once a month for an IV bag full of meds, and get a spinal tap every three months for the next four years. Today Johnny lit up and gave me a high five when I told him the same thing. I guess it seems a lot better than what he's been going through, or what he is looking at over the next couple of months. It's all perspective.
The next two months will be pretty tough on him. The drugs are the strongest he's had since the first month of treatment. Although he doesn't even really look sick right now he will probably get that "cancer patient" look again. He will most likely lose his hair, and the steroids will make him puffy around the middle and in his face. He will also loose those cat-like reflexes for awhile. No skating until he gets through this. That first month he could barely walk down the hall without taking a header (he did fall all the way down the stairs once). I need to figure out how to convince him to wear his helmet around the house. It actually may not be all that hard once his hair starts falling out again. He really seems to love the oragutan like stuff that grew back during his first break in treatment. Again, it's all perspective I guess.
He did great today. He knows what's coming, and I could tell he was nervous when they told us he could get started, but he never complained. He just got on with it. He's a lot stronger than me (hell, I almost passed out during the spinal tap), and even though he's only seven he knows he can't get to the end until he gets started. As always, I'm very proud of him.
Monday, November 14, 2005
Maybe next week Johnny can start his treatment.
We got to the clinic this morning and it kind of started off on the wrong foot. When Johnny's port was getting accessed, the nurses couldn't get a blood return. It took over 7 saline flushes (more than 30 minutes to do a 3 minute job) so I asked if they could take out the needle and try again. The nurses HATE resticking kids. I don't blame them. The kids hate getting stuck over and over again too. Luckily, we had two of our favorite nurses, Beth and Erica. Since they are both great at what they do, I was a little concerned when they couldn't get his port to work. Johnny's PA, Cara, came in when she heard that we were having problems. She suggested that we start over, get a finger stick to get blood work going, and try the port again later. If it didn't work the second time, there was a medicine that could be pushed through the port that would dissolve whatever could be blocking it.
Johnny was not happy. He never cries, and never says a word, but this morning he came close. For some reason, all kids hate getting their port accessed. If given the chance, they would much rather have an IV in their hand or arm, or get a finger stick. I asked why, and from what Johnny tells me, it's the pressure on the port he feels when they access him that bothers him the most. Most kids don't like the taste of the saline flush either (it's weird they can taste it). Johnny says he doesn't taste the saline, but I think he does because I can see him swallowing and swallowing and he flexes his feet when the nurses give it to him.
This morning he was extra anxious too. It was a big day for him, spinal tap (LP), vincristine, dexamethasone, and doxorubicin (the stuff that is really hard on his heart). Last week on the way home I asked Johnny if he wanted me to tell him what the next part of his protocol looked like and what was going to happen to him. He just looked out the car window and shook his head "no". He knew that today was a big day, but he really, really hates getting LP's. can't say I blame him.
All of the "problems" with his port didn't make matters any better for him. Beth took out the old needle and started to get a new one ready. Johnny looked at me with both fear and concern in his eyes, and softly said, "Can we put more numbing cream on first?". Beth is really great, she understood, and did exactly what Johnny wanted. When Johnny realized that he would still have to get his port accessed even after the finger stick and blood work he was completely bummed. He didn't want to listen to the iPod, or watch his favorite dvd, Ultimate X (I know it sounds like a porn movie, but it's really just highlights from the X-Games).
The results came back and Beth said "It looks good! His hemoglobin is 12.8, and platelets are 275, but we are still waiting on his ANC. His white count is 3.2, so I'm sure his ANC is fine.". I was so excited. I just wanted this day to be over with for the little guy. Then Cara came in and told us his ANC is 300, down from 580 last week. I was crushed, I think Johnny was too. Even though he doesn't like days like today, he just wants it to be over. I hope his counts can get back up to 750 by next week. I thought FOR SURE he would be well over the 750 mark by now...
The upside is that Cara knew she could get us in for another treatment -- the inhaled antibiotic, Pentamadine. That way we wouldn't have to come back on Wednesday. Mike took Johnny for his treatment, and I stayed and talked to Cara about what to do next. I ALWAYS ask "why?", I don't know why I do it, maybe it's just a natural reaction for me. Cara explained that what happens with Johnny "is that his marrow is so beat up right now from the cancer and chemo, that ANY little virus can knock him down (or just his ANC). Things that normal, healthy people wouldn't even know they have, is devastating to kids with leukemia. It takes their marrow so much longer to recover". I told Cara that we have been letting Johnny skate A LOT, and asked if I should make him rest instead. She said "definitely not. Let him be a kid for as long as he can. As long as his platelets are up, let him do anything he wants. Because after he starts the next phase, he won't feel like doing much at all".
Cara also told me, once Johnny finally starts his treatment, regardless of counts, for the following two weeks he will still get treatment. The next chemos will bring his counts down anyway, but at least they can transfuse platelets and RBC's. Then he will have a scheduled week off to hopefully have his counts recover (I'm planning for at least 3 weeks), once his ANC is back up to 750, he will have the final two weeks of consolidation. I tried to figure out when all of this would be over, and it looks like maybe by mid January. That would be cool.
That's the update.
I also wanted to remind everyone that Joey's birthday is 11/28. He has been really depressed lately because of all of the attention Johnny has been getting. Mike is going to take Joey and some friends to Laser Quest on Saturday for an early celebration. Mike's mom took Joey last night to her house and spent the whole day with him today to try and make him feel special. I thought that was really sweet. It seemed to have perked him up too. He just needs attention, so if you don't mind calling him or sending a card on his birthday, I think that would really cheer him up. I'm not asking for ANYTHING but that for him, he has everything he wants, just a phone call would be cool for him.
Don't forget to donate blood. This time of year is so important, more people are on the roads traveling to "Grandma's house"... You can donate in Johnny's name, or just do it and know that it will go to someone who needs it. You are truly saving a life with every donation -- actually it saves THREE! Think of Johnny if that helps. There is no amount of chemo or any other drug on earth that can help him when his platelets and RBC's are down, just your donation.
Thursday, November 10, 2005
The plan was for Johnny to start "delayed intensification" this past Wednesday, but when he went in for bloodwork this week his ANC was only about half of what it needs to be to start treatment. Although Johnny's counts have been notoriously unreliable, the doctors are pretty sure this drop is just due to his body bouncing back from the cold that put him in the hospital last week. We will check his counts again on Monday, and if they're high enough he will start treatment then.
Since Johnny isn't on any drugs until DI starts he is feeling pretty good. When he feels good he pretty much only wants to do one thing, skate. If he's not out in the driveway or on the back patio popping ollies, he's upstairs sliding a new deck around on the carpet in his room. It's really nice to see him have this type of energy after really being down last week. I wish it would last but I know that when he starts DI he will probably not feel like doing much beyond laying on the couch and watching TV (I think Julie may give in and get Fuel TV so he can at least watch action sports on cable).
Since Johnny has been given at least a few days reprieve I've tried to get him to the local skate parks during the day while all the other kids are in school. Both Wednesday and today I took my lunch hour and drove him to the park of his choice. It actually works out great, I skip lunch (which I don't need) and Johnny gets about 30 minutes to skate the park by himself. It doesn't sound like a long time, but even when he's feeling pretty good he doesn't have the stamina to last more than half an hour or so. I think it's good therapy for him too. He was getting pretty depressed last week sitting in the hospital, but the events of this week has really boosted his morale. It started with the Texas Jam on Saturday which really got him pumped up, and continued up to today when he got a really cool surprise from the guys at Deluxe, a company that manufactures and distributes skateboard equipment. More on the surprise in just a minute.
Last Sunday we stopped by the EZ-7 so Johnny could skate the new ramps they put near the ditch. Johnny was still pretty beat from the event on Saturday and after a couple of minutes was ready to head for home. Just as we were loading up I heard someone say "Hey, it's Johnny!" When Johnny looked up he saw Alex, Kenny, Ernie, and Steve (the four pro skaters who did the demo for him on Saturday) getting out of their car. When they invited him to stay a little while and watch them skate the ditch he got a second wind, we ended up staying until it was almost dark. Johnny didn't skate the ditch while we were there, but he has been talking about it all week. I told him he couldn't skate it until he could go frontside. Apparently he has been practicing because today he told me he was ready for the ditch. I was a little worried, but he did fine in the ditch, and he even started doing some little frontside ollies on the ramps.
Now on to the surprise. While Johnny was skating today I got a call from Jim at Deluxe. He asked about how Johnny's treatment went on Wednesday and seemed a little disappointed when I told him it had been delayed until Monday. He then went on to tell me that since he thought Johnny would probably be feeling pretty crappy today he had put together a little surprise for him. I assured him that even when he is feeling good Johnny is up for a surprise. Jim told me to have Johnny go to www.DLXSF.com when we got home. He was pretty sure Johnny would catch on pretty quick once he pulled up the site. When I got him home we typed in the address Jim had given us which happens to be the home page of the Deluxe site. It took Johnny about two seconds to see the "Get Well Soon" message from the guys as Deluxe! He was really blown away when he clicked on the link and up popped a video of him doing a 360 in front of the pros on Saturday! His first question was "Can anyone watch this, or is this just for me?" When I told him that anyone who goes to the Deluxe site will see him he flipped out. He is, without a doubt, thinking he's pretty cool (or maybe it's tight...I'm getting too old). I really want to thank John at Deluxe for putting the video together. I have no idea how much work it was, but if he could have seen Johnny's face the first time he watched the video he would have known it was worth it. If anyone wants to check it out please go to www.DLXSF.com. You'll find the message to Johnny on the column on the left side of the page. It's really cool!
This has been a big week for Johnny, and it couldn't have come at a better time. It's been exciting for me to watch him get so pumped up. I'm sure there will still be a lot of ups and downs over the next couple of months, but the memories of the people he met and the things he did this week will be something really positive to focus on.
Saturday, November 05, 2005
Today Southside Skatepark hosted the annual Texas Skate Jam. It's a skateboarding exposition/contest with proceeds benefiting the Make-A-Wish foundation. There were tons of kids there to watch the group of professional skaters who flew in from all over the country. I'm sure it was a good day for Make-A-Wish, I know it was a great day for Johnny.
A couple of weeks ago while we were at Ohana Surf Shop in Galveston, Boog asked Johnny if he wanted to go to the Jam. Of course Johnny said "yes", so Boog got in touch with his friend, Damian, who was organizing the event for Make-A-Wish and made arrangements for Johnny to attend the Jam as a Make-A-Wish kid. I thought that was cool. Then Damian called this week and asked if Johnny wanted to show up a little early and spend some time skating with a couple of pros. I thought that was very cool.
We got down to the skatepark at about 9am (two hours before the doors were to open to the public) and there was already a line of kids waiting to get in snaking around the building. We quickly found Damian, and he introduced us to Jeff Taylor who is the Director of Marketing for Adio Footwear. Jeff invited us into the park and said a couple of the pros from his team would be there shortly. I had barely gotten everyone's kneepads out when Jeff returned with Kenny Anderson, Steve Nesser, Ernie Torres, and Alex Chalmers. These guys are truly incredible skaters, and turned out to be great with the kids. At first both Johnny and Joey were a little quiet and shy, but when Kenny gave Johnny a new skateboard he lit up quite a bit. I think Johnny was a little "skate shy" because he just got out of the hospital the day before yesterday and hasn't really been able to skate since he started back up on his chemo. I know he wanted to impress these guys, but a lot of the medications he takes seem to have a negative effect on his strength and balance and he didn't want to kook out in front of anyone. Kenny and a couple of the other guys finally got Johnny to play follow-the-leader around the park a few times and Johnny started loosening up and having a good time. We had at least an hour and a half with the Adio team in the park to ourselves. If you can't relate to skating just think spending that same amount of time playing catch with Roger Clemmens, or throwing the football around with Brett Farvre. It would not have been better.
Jeff, and Adio, should be really proud of the team. I was really impressed with all the pros, and how they interacted with Johnny. Although these guys are skaters, you could hardly call them kids. They were all very mature and seemed interested in making sure Johnny had a good time. Alex was especially interested in Johnny's story, and he spent a lot of time connecting with me and Joey while Johnny was off with the other skaters. I didn't see him skate much which was too bad because the guy is super good, but it was really cool hanging out with him for a while. Before we left Alex told Johnny that if he looses his hair during chemo he can have his (he recently cut his very long, and apparently somewhat famous, hair and is keeping it in a baggy at his house) to make a wig. I'm really hoping it doesn't come to that, but it would be kind of funny to see Johnny skating around with an Alex Chalmers, butt length, wig. It's been a really, really long time since I knew who was who in the world of skateboarding (although I did hear that Tony Hawk grew up and became kind of a big deal), but from now on Johnny and I will be huge fans of these guys.
When everyone finished skating Damian wanted a couple of pictures taken in front of the Texas Skate Jam Banner. I think this may have been the highlight of the day for both Johnny and his brother Joey. Picture the two of them surrounded by some of the best skaters in the world (who by this time included Tony Trujillo) having there picture taken in front of hundreds of kids waiting to get in the park and watch their heros skate. Johnny was beaming!
This was a great event. Although I've been writing about Johnny I can with much certainty say that this was a great day for a lot of kids. Everyone I saw was having a great time, and there was a very positive vibe to the whole event. It was a great time for a great cause!
Thanks again to Boog, Damian, Jeff, Jim, the Adio team, Tony Trujillo, and everyone else who helped make Johnny's wish come true. Although he tries to be cool about everything he has been lit up the whole day, and I'm sure this will help keep his spirits up though the next couple of months. Since he starts the roughest part of his treatment next week this could not have happened at a better time.
BTW, I think the time with the pros may have rubbed off on him a little. While we were leaving the event today a kid walked up to Johnny and asked him to sign his board. I expected Johnny to ask "why?", but instead he just took the board and asked "Do you have a pen?"
Thursday, November 03, 2005
Sorry I haven't posted in a while, this one is going to be long...
Last Friday, we were getting ready for a weekend at the beach. We planned our last "hurrah", because we knew once Johnny's treatment intensified, we would only be going back and forth to the clinic/hospital. Stewart Beach was having a 20th Anniversary "JAWS" premier, as well as one of Mike's friend's ( James Fullbright) new movie, on the beach. Stewart beach had a 30' x 50' inflatable screen that you would watch from your car. I told my sister that I would take Emma, so she and Craig could celebrate their anniversary.
Kathleen (Johnny's tutor), came by for about an hour or so. I had noticed all day he wasn't his happy, wiggly self. Kathleen mentioned as she left, "I don't think he's feeling very well.". He pretty much laid around all day, but I thought he might just be saving up his energy for when we were in Galveston to skate with his "peeps". Once we got to the beach house, Johnny went up stairs and laid down. I thought it was strange, but didn't think much of it. I asked him if he was feeling okay, and he said yes, and I took him for his word. We all went to bed about 10:30, and I felt sure that Johnny would be up and at 'em the next morning.
Sophie was the first one up Saturday morning. We did a few things around the house and waited until the rest of the family woke up. Johnny didn't wake up until about 11:30. He jumped up got dressed and laid down on the couch. He didn't move for the next 2 hours, so I took his temp. It started low, about 99.8, I let some time pass and took it again. This time it was up to, 100.8. Anything over 101, and the kid goes to the hospital. I told Mike, and he suggested that we start packing and head to TCH. We did, by the time we got to TCH a few hours later, his temp was up to 102.9. I thought, at best we would be admitted and stay a few days...
Mike was home with Joey and Sophie, and I was with Johnny. We got our room about midnight, and went straight to sleep. We had an AWESOME nurse -- Vida. She gave Johnny a hard time because he was so pretty he looked like a girl, and that it wasn't fair that his eyelashes are so long. The doctors started him immediately on a mixture of three antibiotics, did blood and throat cultures. A doctor in the ER that did a throat culture on Johnny, said that it looked like strep. I about died. During "Rita" when we were in for fever, I met a mom whose daughter was in TCH for over TWO WEEKS for strep. I was not mentally prepared for a two week stretch.
Luckily all of the cultures came back negative. Over the next few days, Johnny's temp went as high as 103.9. When your child is that sick, you are glad that your in the hospital. He really felt and looked terrible. After the first three days, they came to the conclusion that what he had was just viral and we were just waiting for his fever to break. We would have to wait 24-36 hours after the fever broke to be able to go home.
Sunday, Mike and I decided to switch "shifts". Johnny had called Mike up earlier to ask for Fruity Pebbles. He wasn't eating much (not even popsicles!), and Johnny promised he would eat Fruity Pebbles for dinner. He also needed some more clothes because the clothes I packed weren't cool enough... Mike was also going to bring me real food for dinner! I was very happy.
Mike's mom came to the house to watch Joey and Sophie, and made a delicious roast for dinner. When Mike came up to TCH he had everything except Johnny's Fruity Pebbles. I was SO MAD. Mike had no idea. Before I went home, I stopped at Kroger and picked up some Fruity Pebbles, donut holes, water and some other things I thought Johnny might eat. I took it back to TCH. It is so hard to be the only person in the room with Johnny. You can't leave him, you can't take him. Your stuck -- it was so much easier when Mike and I were together, I would send him for coffee, he would come back, then I could go do wash. It's just hard on Sophie and Joey to be away from us for so long, I'm sure it's scary for them when Johnny is in the hospital and Mike and I are both gone.
Monday was Halloween. TCH always has something special for kids on holidays, but I still wanted to take Joey and Sophie up to see Johnny. On Saturday, when I was packing for the hospital, I threw in Johnny's Batman gloves and mask, just in case. I told him about it, and he said, "I want to be a surfer", so he threw in some trunks and a rash guard. Good thing too. He dressed up in his "surfer" gear and Mike took him to the 16th floor where they had a big party. Johnny wasn't feeling too well, so they only stayed about 15 minutes, and went back to the room.
I brought Joey and Sophie up about 4:00, and only stayed about 45 minutes. While we were there Joey walked around the floor in his Darth Vader costume and Sophie followed, dressed as a witch. My dad stopped by and dropped off a pumpkin he carved at work with some of his buddies. Dad also brought his costume, -- a 70's afro wig, and some glasses with a fake nose attached. He left it for Johnny. We left a few minutes after dad did. On our way out, Sophie decided that instead of her witches hat, she would wear the wig. I thought "she will take it off in a minute...".
She ended up wearing it the WHOLE night. We went to a party at a friends house and everyone laughed and laughed at her costume. Although they were a little puzzled at her combination...
I couldn't stop laughing at her, watching her run from house to house in the afro wig. The thing was literally twice the size of her head. People on the street got a good laugh out of her too. They would ask me what she was, and I would tell them "disco witch". The response I would get would be like "aaaah, okay...". She was just so happy. She kept screaming "FREE CANDY, FREE CANDY!". It wasn't her first Halloween, but it was her first one in her memory.
Joey's costume was a huge hit with all of the boys. It was a Darth Vader costume witht the "deluxe" helmet. It had a voice changer attached, so when Joey talked it sounded like DV. Joey had reached Rock Star status with the helmet, and he was happy. At the party they had all sorts of fun games and contests. Joey won for best costume, and there was a rubber glove that was filled with candy corn, and we all had to guess how many it took to fill it. The kids guessed from numbers as low as 30 to as high as 1004. Joey took one look at it then said "120", he changed his mind a few times and finally went with his first answer. There were actually 123 candy corns -- Joey won. He had a great time.
I was so happy for him. He initially didn't want to go to the hospital, he was afraid that he would miss Halloween. All I could think about was Johnny, sitting in the hospital hooked up to an IV -- on Halloween. That has been my problem, everyone's problem. We all think of Johnny, and forget about Joey. He has really been feeling dejected, and acting depressed. It's not that we mean to give Johnny all of the attention, and neglect Joey, but that is the way Joey feels right now. All of our schedules, and events are based on what Johnny can do or feels up to. It's only natural, -- we want to do things as a family, leaving no one behind, but in Joey's reality, he is getting left behind.
All of that to say, Joey was stoked about his Halloween. He went trick or treating with the "big kids", of course chaperoned by an adult other than his parents, and I took the little ones. I told Joey that I always LOVED going T or T without my parents, and asked if he had fun too, he said "yeah!". I'm glad, he deserved it.
Tuesday after school, Mike and I switched out again. On the way to TCH, I started getting hives. BAD. Usually when I am nervous, I will get hives on my hands, but this time I started getting them all over my body. Arms, legs, stomach, and they were working their way up my neck. I was nervous because I was leaving everyone. Mike was going to work on Wednesday and Thursday, and the kids were going to school. No one at the house. After school the kids were going to a friends house until Mike came home at his usual time, 5:30. That just freaked me out. What if something happened, how could I get to the kids? I know both of our mom's could get to the kids faster than I could at that time, but the whole thing just had me in a tizzy. Mike went and bought me some hives medicine, and I had to double my dose. I still had them the next morning, but they weren't nearly as bad as the night before.
I brought Johnny movies, popcorn and his guitar and bongos. But he was so sick that he didn't really even want to play them. He actually had a reaction from one of his antibiotics, it's called "red man syndrome". When this one is given too fast, it makes your face and torso red and itchy. I had left the room for a few minutes to talk to our friend George who was right next door, when I came back Johnny face was beat red, and he was rubbing his checks really hard. I said "what's going on? what's wrong?", he said he felt fine, but I got the nurse and she said, "oh, that's called "red man", it'll pass, don't worry". Who me? Worry? nah... It did go away, after about 15 minutes, he was normal again.
Once Mike left with the kids, Johnny started crying. Not hard, he really didn't even want me to see him cry. He was mad and frustraed that he couldn't go home. He wanted to be with Joey, but he was stuck. He buried his head in my lap for a minute until he gathered himself, and then we watched movies the rest of the night. Nothing else was said.
Tuesday his fever broke. Johnny was strong enough to get out of bed and take a trip around the hospital. We ran into Dr. Margolin and she heard that he was in. She had talked to the doctors working the floor and let them know about his history and asked them to keep her updated on his status. Each doctor we passed asked him to not ride his IV pole like a skateboard. Of course he listened to them until they were out of sight.
Wednesday afternoon I knew how Martha Stewart felt when she was in prison. Sure it was a nice prison, one of the best to be in if you have to be incarcerated, but your still in prison. We were going stir crazy. By now Johnny could ride bikes up and down the halls, play basketball in his room, and still have energy for more. Thursday couldn't come fast enough. We decided to go for a walk outside. As we were walking down a slope outside, the IV bag hit part of the IV pole just right, and it disconnected. IV fluids were flying all over the place. It reminded me of the scene in the movie "Airplane", where the girls' IV comes out, and no one noticed. That's exactly what happened to us. It only took a few seconds, but in that time, Johnny and I were both covered in IV fluids. It was scary, but more funny than anything. We cut our trip outside unexpectedly short and headed to our floor and had his nurse to hook him back up. He was lucky, since everyone knew that we were going home the next day, the nurse just disconnected him, he was still accessed, but with no pole. FREEDOM!
On Thursday morning we were packed and ready to go. I was actually able to pick the kids up from school. Friday Johnny rested/slept until about 1:30pm and then we got out to do some errands. I wanted him to save his stregnth for the Texas Skate Jam for Make A wish on Saturday.