CHEMO

Completely random photos of Mikey "back in the day" -- check out his rat tail YIKES!

Since I haven't taken any photos this week, I thought I would post some old ones of Mikey from the early 80's.
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Yes he was actually "pro" when he was a kid!

WOW. I was amazed. Johnny actually got chemo today. I was completely unprepared for it, I certainly didn't anticipate his counts to be high enough, and if they were, I didn't think he could get chemo with mouth ulcers. But he did (his ANC was 890!), and I am glad. Johnny was NOT in a good mood, didn't want to be at the clinic, and let everyone know it. Anytime someone said "hi!" or even looked in his immediate direction, the outwardly friendly person was greeted with the STINK EYE -- big time.

Last night Joey and Sophie both spiked fevers to 102.7 -- there's that number again. Mike is out of town, so I called him and asked if the thermometer was broken on "102.7", since each time I take someone's temp, that's the number that I get. He laughed -- I didn't. I didn't know what to do with the kids, Johnny was scheduled for clinic today, and although most families bring every kid they have to clinic whether they are well or not, I was not about to do that. I called Mike's mom and she came to the rescue. I kept telling her last night, "it will be a quick visit, there is NO WAY Johnny will make counts..." huh! Famous last words... I didn't bring the camera, his favorite pillow, or blanket. I really had no intention in staying (either did he).

At least we can move forward with his treatment, and he seems to be doing well right now too. Each time he gets a LP (lumbar puncture), I always go over his meds with the nurse "okay, he gets one fentanyl, and two versed". Today was no different, except, this time our nurse only gave him one versed (the fentanyl and versed help with pain and memory of the procedure). During the procedure I noticed his eyes were still WIDE open, and that every time the doctor did something, they would open wider, and I noticed his pupils were very dilated too (could have been from the drugs, but normally he's asleep, so I wouldn't know). I asked the nurse if she gave him the other versed and she said "no, I usually only give them one...". I quickly told her I want HIM to have another. She wasn't happy with me, but did it anyway. I know she was probably thinking "YOU need it, not Johnny", but I didn't care. I don't want him to remember a THING about spinal taps -- EVER. Having his eyes open, and looking around completely aware of what is happening didn't make me feel comfortable. Johnny would never say a thing, even if he wanted to. He just wouldn't. So I did for him.

Anyhow, Mike's mom had dinner ready when we walked in the door, and said she scheduled her cleaning lady come tomorrow for me! cool. one less thing I have to worry about. Sophie seemed fine all day, but Joey didn't move, and still has a fever. I made him an appointment, and hope that it's nothing. I am a little worried that he hasn't moved from his bed since yesterday after school, that's what happened to me when I was 13 and found out I had mono. I will make sure they do blood work on him, I will bring the kleenex box -- Joey doesn't do needles well and I fear there will be a lot of tears. I'll update more after his visit.

JOHNNY'S 8th BIRTHDAY AT TCH

Friday night after Kathleen (Johnny's tutor) left, we had plans to go to Galveston for the weekend, but as we were talking, we noticed Johnny started to look very flushed, I took his temp and it was 102.7. I called TCH and told them we were coming.

On Wednesday, the doctor's told us that if he runs another fever above 102.0, come in to get more antibiotics, then go home. Well, go home if his counts were still good, and of course they were low -- 640. Which I think is really good for Johnny, but it's actually neutropenic (low), even for kids with cancer. So they wanted us admitted. BUMMER. I told them Johnny's birthday was Sunday, but it didn't help -- we still had to stay.

The cool thing is, since Johnny doesn't have his port anymore, if all of the blood, streep and flu cultures come back negative, and all other signs point to a virus he can go home. Especially since he doesn't have a port anymore (which can be another source for infection)! I'm so glad he wanted it out, otherwise we would still be there -- as long as a child is running a fever (and they have a port), they stay until 48 hours after the fever is gone. Right now, Johnny is still running a small fever -- anywhere between 100-101, nothing too serious, it just has to run it's course. The other cool thing about not having a port is, they don't run fluids automatically -- since he has an IV in his hand, they don't like to hook the kids up to anything unless it's really necessary.

On Sunday TCH had sent Johnny balloons, a cake and Legos, it was very nice. AND they let us go home -- even nicer! I told the doctors that I wanted to do the right thing for Johnny, but if it looked viral, I was more than willing to go home and ride it out. I also told them his BIG party was on the 29th -- so if we had to stay all day Sunday, we were good with it. The doctor's really felt bad for him, made sure it was viral, said he looked good (good thing he still had a little sun on his face from Easter weekend), and sent us on our merry way. Johnny is scheduled for a spinal tap and vincristine on Wednesday, so we will find out how his numbers look then, and if he is even able to get chemo this week. It would be cool if we skipped this week, and got chemo next week, after his party. You never know how each dose will effect him.

Anyway, we are home for now, update more later!

A CLOSE CALL!

Yesterday was spent at the clinic, Johnny had a 102.7 fever -- but he wasn't admitted! WOO HOO! He actually started running a fever at dinner on Tuesday night, but I was not about to take him to the emergency room. I was pretty confident that he was coming down with a cold, Joey started it on Saturday/Sunday, no fever just a cough and runny nose, so I knew it was only a matter of time before Johnny got it too. Unfortunately, what would be just a common summer cold to you and me, can be potentially dangerous to kids on chemo.

Mike wanted me to take Johnny in on Tuesday night, but today is Mikey's birthday and Sunday is Johnny's birthday. I knew if we went to the emergency room Johnny would be admitted and it seems like we are usually in for at least 5 days. I didn't want either of the boys to spend their birthday's in the hospital. I took Johnny in first thing Wednesday morning, before we left his temp was 99.1, so I figured that he would be fine the rest of the day. When we got to the clinic an hour later, he spiked a fever of 102.7! YIKES!

The doctors ordered a chest xray to make sure it wasn't pneumonia (it wasn't), gave him a dose of heavy duty antibiotics and sent us home about 3pm. They seem to think it's viral -- WHEW! One of our doctor's stopped by to see how he was doing and told me that ANY time Johnny runs a temp., I HAVE to bring him in -- no matter what time of day. By waiting until the next day, I am taking a calculated risk. I told her that the nurses in the emergency room are completely inept when it comes to taking care of kids with cancer. The past few times we went there, we had the same nurse who had NO IDEA how to access his port -- I know he doesn't have one NOW -- but that's not the point. I just don't feel confident with the nursing care in the ER. Don't get me wrong, the nurses totally ROCK when it comes to broken arms and trauma -- but cancer kids -- not so much. The doctors are great, and I'm sure the nurses are too, but I guess we just get spoiled with the staff in the clinic. EVERYONE gets a vein on the first try, they know each kids favorite drink, game, and food. They see your name on the board and come and look for you even if your not their patient that day, and then continually check to see if you need anything.

Anyway, next time Johnny is sick I will probably take him to the ER, as long as he is showing signs of other ailments... Our doctor was right though, you can't guess what is going on, it could be a fast acting bacterial infection or something.

We are home now, Johnny is doing well and Mike's mom is coming over tonight so we can go out to dinner!

FINALLY -- A NEW POST!

Getting his cast off!

Doing the Bunny Hop at the clinic

Face painting at the clinic's Easter Party

I didn't realize how difficult it would be to eat corn on the cob with a cast!

No wonder kids have a fear of people in costumes!


Sorry it has been so long since my last post, things have been going well and we have been very busy the past two weeks -- imagine that!

Mikey was out of town most of last week, so I pretty much just tired to keep up with everything the best I could. On the Friday before Mike left, Johnny went to one a friend's house after school. They have been friends since Kindergarten, and really get along well, so about the time I went to pick him up, he called and asked if he could spend the night. WOW. His first night away from us in almost a year. I told him I would talk to dad and call him back. Mike and I both agreed that it would be okay, and that I would drop off his stuff later, and that he had to promise to brush his teeth! I told him that if he wanted to come home, no matter what time it was, I would come get him. He just grabbed his bag and took off, didn't even look back, he did, however, yell "bye, I love you!". So that made me feel a little better about the whole thing. Oh yeah, did I mention that it was Caroline's house? yes, a girl.

When I picked him up the next day, they were watching King Kong and just having a great time. As we walked home I asked him if he kissed her, and he was thoroughly disgusted with the thought of actually kissing Caroline, "MOM! She's a FRIEND!". Okay, Okay... I still wasn't sure though. Then I asked him if he thought King Kong was scary, and he just looked down and smiled. Sunday (3/8), we went to a friends house and all of the kids -- except Johnny -- went swimming. That's about the time he realized that having a broken arm wasn't so cool. While some of the kids were swimming, Johnny skated with the others, and of course fell and didn't tell me. I noticed a pretty big scratch on his upper left check and had to drag it out of him about what happened. He blamed it on his cast, he fell and couldn't straighten out his arm to break his fall, hence the road rash on his face.

Wednesday was his orthopedic visit and blood work. We went to the first visit for xrays, to make sure he was healing and also to see if he actually broke his arm. They had the kids lined up in a special room all to get their casts off, and a re-check. Johnny had seen the machine/saw they use to take off casts when Joey had his arm broken a few years ago. He wasn't worried about it, we all laughed watching the other kids getting their casts off because when the saw is cutting, the vibrations REALLY TICKLE. Some kids seemed scared, but didn't dare show it in a room full of other kids, so once the nurse started cutting, you could see in the kids eyes how they wanted to cry but it tickled so much they couldn't help but laugh. They were definitely confused... the first thing all of the parents did once their kid was cast free was WASH their limb (arm or leg). Johnny's hand smelled like a stinky foot, and I couldn't wait to clean him up. Then it was xray time and wait for the results -- it was fast! By the time he did the xray and we walked back to the de-casting room, the xrays were up and ready on the computer. They looked at it and decided that it wasn't broken after all -- so he didn't need another one!! WOO HOO! He was stoked because that means he could go surfing when we were in Galveston.

Then we went back to the clinic and they were having a GIANT Easter party! They had a DJ, the Easter Bunny, cupcakes, cookies, clowns, face paintings -- you name it, it was there. We stuck around for awhile and the kids hunted for eggs, and Johnny even participated in the games, limbo, and bunny hop! This was the first time he ever joined an activity at the cancer center, I was so happy for him, and he had so much fun. That doesn't mean he wanted to stay any longer than necessary, trust me, as soon as they drew his blood he wanted out. So we left.

I called later to get his counts faxed to the house, I picked up the previous week's counts and they were fabulous -- his ANC was 2,900! What a SHOCK! We all left the clinic in a great mood, and couldn't wait for a weekend at the beach. Ramone faxed over his counts from that day and I was just as shocked to see his ANC dropped to 810! Crazy. I don't know why it does this, the doctor's don't even know. But until we can get his counts leveled out, we will still be making WEEKLY clinic visits, and could possibly be on restriction of activities (no crowds). I will keep you updated for sure.

I thought we would have to make two visits this week, one today for pentamadine, then back on Wed. for counts. But when we showed up today, they drew blood so we don't have to go back! WOO HOO!!!! Before we left I picked up his preliminary counts, the ANC wasn't ready yet, and everything looks okay, not great but okay. He always seems to hover right around the numbers they use to transfuse, but luckily nothing yet! His white blood cells are 1.17, which means that his ANC is lower than last weeks, or at least very close to the same. I will call the doctor's to find out if we lower his dosage, or if we keep it the same.

Easter was awesome! The weather in Galveston was perfect, we played outside everyday, and the kids had a blast. Johnny skated from dusk 'til dawn. He is so excited about daylight savings time, the longer the sun is up, the longer he can skate with his friends. On our way home last night, it was about 7:30pm and he still wanted to skate, "BUT THE SUN IS STILL UP MOM!". I told him that we had to unpack and get ready for a big week ahead of us, and we had clinic first thing in the morning. I bet he could hold the World Record for most hours skated in a row. As we were pulling up in the driveway he said, "I feel like I can still skate", and I asked him "do you mean that you 'feel' like your still skating because you skated all weekend?", and he said "No, I still want to go skate...". After baths, and as soon as all the kids laid down, they were out like a light.

The next big clinic visit for Johnny is the 26th, if all of his counts are good, then it's vincristine and a spinal tap -- yep, right before his birthday party and First Communion. But if his counts keep up the way they have, maybe we can hold off until after his party! It's weird to think that almost a year ago all of this started.... he will be eight on Sunday, and for his birthday last year we had no idea what was in store for us -- what a difference a year makes.
Update more later!

GULF COAST REGIONAL BLOOD CENTER

The kids at Minute Maid Park
On the field
The Crowd
The field
Our Story
Our Story
X-Ray
Minute Maid Park
The Old Splint
the New Cast
I will start with last Wednesday's clinic visit. Johnny's appointment was at 8:30am for the clinic and 1:40pm ortho -- since there was a lot of time in between, I dropped Sophie off at Dympna's after the first appointment. Yes, it was a waste of gas, parking money and time, but we didn't have to have Sophie with us all day -- so it was worth it. It's hard when your four years old and have to spend 12 hours at the clinic... so we were all happy!

Anyway, I was in such a hurry going from one appointment to another I didn't stay to get Johnny's counts. His doctor called the next day and told me they were good enough to up his dosage of nightly meds meds -- I will get the counts this week when we go. That night, Kinsmen (Sophie and Johnny's school for mother's day out) had a blood drive for him, we didn't get home until 8:30! But it was worth it, Kinsmen ended up getting about 12 donors.

Friday through Sunday Johnny was VERY tired. I think his schedule is catching up with him, and since it's our first weekend home in almost 2 months, he is just relaxing. He stayed in his jammies all day Friday, Saturday and most of Sunday. Saturday was a retreat for his First Communion, we had to be at the church at 8:30 -- he wasn't happy. As soon as we came home, he put his jammies on and took a nap for about 3 hours, then fell asleep about 9:30 that evening.

Sunday was our big day. Mike met a friend in Galveston and went surfing, it was small so they headed to Surfside. He was home by 11:00am, then we went to speak at the Gulf Coast Regional Blood Center's Gathering of Hero's. It is an annual event to honor the Gold Level donors, and GCRBC asked Mike and I to be the key speakers. The event was at Minute Maid Park, and the crowd was about 1,500-2,000. It was crazy -- the announcer introduced the new CEO, they showed a short video, and then we were up. After we spoke everyone could eat.

Mike almost chickened out on me -- but I think I made him feel guilty, and he gave in. The setting was pretty cool, we have never been to the ball park before, much less on the field. We (just us, no one else) could walk "almost" anywhere "EXCEPT THE GRASS!". Since our kids are so crazy, we let them quickly step on the field then ushered them off, we didn't want to tempt them into doing something that would get us kicked out. Anyway, it was a pretty surreal experience for all of us, the kids actually wanted to come up on stage, they probably thought there would be a "product toss" at the end like at the last skating event. We spent some time with the previous CEO, Mr. Teauge, who founded GCRBC, he reminded Mike and I of Herb -- without the airline. Very personable, likeable, and easy to talk to.

It gave the kids a chance to see what a difference you can make by donating blood. We had a lot of people come up to us later and say that it was great to see where the blood goes (recipients). We met this one Scottish guy who was really touched by our story, he was crying and just wanted to let us know he will always donate because of families like ours. He also had quadruple by-pass, goes to Europe every now and then, but as soon as he is eligible, he donates. THAT story is such an inspiration. People think of a hero as someone who can stop a runaway train with one hand, but it is people like this sweet man that donate on a regular basis that are the true hero's, they remain nameless and faceless, just quietly helping save lives one donation at a time. Incredible. They don't ask for anything else in return except that we all donate on a regular basis, which, if you or your child are bleeding to death or have a serious illness, really isn't much! My next big thing is to get on the National Bone Marrow registry... talk about saving a life!

Anyway, it was a great, exciting, once in a lifetime weekend , we all had a ball -- it will be hard to top!

Mike and I got an email from Jim at Deluxe yesterday, he said that an update about Johnny will be in the next Thrasher Magazine. He was in the February issue as well, -- I am sorry I forgot to let you guys know. Last time it was just a little blurb way in the back, with his photo, it might be the same this time as well. If you pick one up for your grandchild or child you might want to go through it first and take out any "questionable" ads before you pass it along. If you can support Deluxe in anyway, do it. Deluxe's support of Johnny has never wavered since they met him in November -- they are a great bunch of folks, and any support we can show them is supporting Johnny as well.