Wednesday, August 31, 2005
Our day started early this morning. We were at the clinic about 8:15 (our appointment was for 7:45 but traffic was terrible!), and got the ball rolling with Johnny's blood work and possible trip to get a BMA. We went straight to an exam room and had Johnny's port accessed.
I will back up a few days though. On Monday, I thought Johnny might need a transfusion. Transfusions aren't a big deal, he just seemed weaker than normal, his gums were bleeding alittle, said his leg hurt, 'felt cold on the inside", circles under his eyes, and that it was hard for him to read. Keep in mind, he said all of this over a nine day span, and never mentioned another symptom again. On Sunday night, Johnny told me he "felt cold on the inside", so I thought -- transfusion. His hemoglobin has been hovering around 8ish, and anything under 8 and showing signs of fatigue, they transfuse. I call, we go in and get CBC's. His hemoglobin was the highest it's been in a long time, as well as his platelets. His ANC (the white blood cells we need at 750 to get treatment) was at 460. yes, 460. Only 30 pts. higher than last Wednesday. I knew on Monday that we weren't going to get treatment. But you never know...
I called and talked to one of our doctors, Dr. Pass. We had a nice long conversation about the "why's and what-if's". Dr. Pass was glad that I called, it gave her a heads up about what was going on, and where Johnny's counts were headed. She also wanted to tell the other doctor we have been with the past month, Dr. Margolin. Both have an awesome bedside manner. Dr. Pass kept reassuring me that it is highly unlikely that this is a relapse, and that it is just taking Johnny longer to recover. But I had to throw my "what-if's" in here and there. The doctor's still aren't sure why his counts are so low for this amount of time, it is unusual at this point, but they both seemed confident that is wasn't any more leukemia. Needless to say, I didn't get much sleep -- the more books you read, the more oddball storied you hear about relapses....
I was really looking forward to today. Our initial counts came back -- all but the ANC's. Usually when that happens it isn't good. The tech's have to count each cell by hand. But hey, at least he doesn't need to be transfused, and he looks and feels great. Dr. Pass came in and we talked about what was going on and caught up on the last day and a half. We get the ANC's in and they SHOT up to 500. woo-hoo. Hey, you take it when you can get it... We discuss our plan of attack with both doctors and they reassure me again, that, it is unlikely that Johnny is making an Leukemia, but the BMA is just MORE reassurance of that. We take pictures, and I ask if when the bone marrow smears come back if I can see them. Both say "of course", then Johnny pipes in "Can I too?!" --
We go down to the day surgery (PACU), and wait for Johnny's turn. I really wanted to ask if I could watch them do the BMA, but I chickened out. Besides, Joel and Crissy came over to have lunch with us. We took the little guy back, and said "hi!" to all the nurses we haven't seen lately. They all ask about the doodles and how they are doing. I ask Johnny to start singing his "ABC's" when they give him his sleepy juice, -- he's out by "M".
We have a nice (but very quick) lunch with Joel and Crissy. Catch up on how they are doing, how Crissy likes her new job, and what their future looks like. Johnny's procedure is very quick, so we barely have time to eat. We say our good-byes and head back down to recovery. Johnny has been in recovery for 10 minutes or so! But he is still fast asleep. We let him sleep for about another hour, and wake him up. He wants McDonald's for lunch, so on the way over we stop and look at the trains. There are new additions to the train tracks! Johnny is stoked. For a kid who likes such big boy stuff, he LOVES the model trains at TCH.
On Monday, we ran into someone at the clinic, that I have been reading about through a place called Carepages. It's like a blog, but done through the hospital. His name is George and he goes to our local high school. Johnny's 1st grade teacher and George's mom have been friends for a long, long time. George was diagnosed with IV Lymphoma a month ago. He was at the Hospital this week to start a new phase of his treatment. We stopped by for a quick "hello!", and went back to the clinic.
Dr. Pass had already been looking for us, the receptionist told us to wait right where we were and she was going to page the Dr. We go back to the infusion room and wait for the results. We are all pooped! Both Dr. Pass and Dr. Margolin tell us the good news. His smears look "beautiful". Nothing to worry about! who me? Then Dr. Pass asks if we still want to see the slides. Of course! It was so COOL. We went to the back where all the "important" people (Dr's) work. They have these really cool microscope that enables three people to look at the same slide at the same time. We spent about 15 minutes
'ooooo-ing' and 'aaaaaaa-ing' over little red splotches under the scope. Dr. Pass gave us the "411" on what each cell was and what it did. It was really cool, and that is putting it lightly. I would put TCH Customer Service right up there with SWA! It was a great way to cap off a long, but relieving day.
Then we were off to Johnny's breathing treatment. It is a antibiotic that is inhaled once a month, and won't lower his ANC as much as the Bactrim did. I had this vision in my mind of a breathing treatment like a vaporizor that Johnny would be facing and just breathe. Wrong. It is this kinda big ordeal. It's not invasive or anything, just not as easy as I anticipated. In the pictures, he has this green nose plug-y thing so he doesn't breathe through his nose -- it all goes in his lungs. Then there is this complicated looking, yet simple to use, apparatus that has the medicine in it, nebulizes it, and he breathes it. It takes about 20 minutes. He was a champ as usual. Even the nurse commented on how well he was doing. We finished our treatment, and headed home.
But first a stop at Soundwaves. Johnny forgot his favorite hat this morning, and was very upset. Mike told him that if we had time, we would stop and see if there was anything he liked at the store. He found two hats. It took him about 40 minutes to find them though. He had to try each one on, turn it to the side, pose, turn it to the other side, pose, then turn it backwards. If the hat passed all three tests, he wanted it. He is very particular about the way a hat should fit, he said it would be different if he had hair though...
We get home, and Mike's Mom and Liz watched Sophie, cleaned the house, did all the wash, and made dinner for us. Now THAT'S the way to do a clinic day! The best part is, Sophie was good! Yeah! I LOVE the little girl so much, but she is, after all, three. And DEMANDS a lot of attention. She starts the Mother's Day Out program next week! Party at the Romano's! Normally I wouldn't mind the stuff she has been doing, like, taking nail polish and painting her carpet, legs and hands with it. Luckily it was clear. Normally she wouldn't have the opportunity to do stuff like that, but I am really trying to focus on Johnny's school work. Turns out, we did a whole weeks worth of work in one day... Sorry Johnny. I promised the kids, tomorrow will be a fun day. Whatever they want (almost)...
Thursday, August 25, 2005
The week has been pretty uneventful so far. That, is a good thing.
We didn't get too much work done on Tuesday. Johnny was his usual bouncy self and couldn't focus. We only did a few math pages, and some vocabulary. I was pretty disappointed. The way Monday went, I thought that it would be the norm, and not the exception. No matter what we did, board games, baking cookies, he still couldn't focus back on school work. I was worried... we were already a week behind the other kids. His writing seemed okay, but the focusing on work was a different issue.
Tuesday afternoon Johnny's Homebound teacher Mrs. Hemmen was supposed to come over for a while. Of course I forgot, we all went to the Stemmler's house, and spent the afternoon there. It was nice catching up with our friends though. All of the kids played together so nicely that you wouldn't have known there were any in the house. The Stemmler's are one of our oldest friends in the neighborhood. It's a perfect fit, Joey and Joseph are both in the same grade and have had the same teachers all through school. Simon and Jonathan are only one year apart, and Lydia and Sophie are about 2 or 3 years apart. As with any group of kids, as long as they don't spend TOO much time together, they all get on splendidly. The only way we could leave peacefully was to promise that, the next day, Simon and Lydia could come over to our house to play, and Joey and Joseph would go with Dympna to the Library. Only a few tears were shed. I told Johnny that I cross my heart and swear that I would have them over, and he said "every time you say that it never happens...".
Wednesday came, and the first thing I asked for from Johnny was his respect. He said that he would be respectful, and we went to run some errands after we dropped Joey off at school. I guess our little tålk worked because he was SO GOOD! It was the Johnny I love to be around. Kind and polite, caring and helpful. We were able to accomplish a LOT of school work. We actually worked all day, and in anticipation that Simon would have some after school when he came over, Johnny ripped two pages out of his workbook and put them aside. I mentioned on Tuesday when Simon comes over, we can all do homework together. I know it sounds dorky, but if homework isn't done the second the kids come home, it won't get done until 9:30 at night when it hits them, and they are already in bed half asleep... Plus for some reason, the kids like to do homework together.
All day long both Sophie and Johnny kept asking if it was time to get the kids. When Johnny realized that Joey and Joseph aren't going to be at our house, he was CRUSHED. "Who's going to be in the band?! I need more people". I told him the White Stripes only have two people, and they sound great. His response was pretty much "yeah, so..." He was bummed. I could tell he was in deep thought trying to figure out how his band was going to come together. Johnny also asked me to get lists of music for them so they could learn the words to some songs. I got on the internet, printed up some of his requests, and made him his "playlist".
Finally 3:00! We are all in the car, and I am listening to Simon and Johnny talk. Simon told Johnny "I found someone else for our band. His name is Les, and he lives on your street, I have his phone number" (you have to say it really fast and loud to get the full effect). Johnny was happy, and asked "what does he play?", Simon had no idea, but I don't think it matters anyway to them. Like they really have a choice! They were both so excited that when we got home they ran upstairs and got to work -- completely forgetting about anyone else in the "band". Sophie and Lydia went to Sophie's room and closed the door -- "No boys allowed!".
I made them all snacks and took them upstairs. I went to the girls first. They squealed in delight "Let's have a tea party...", Then Lydia said "the boys are making too much noise, can you ask them to keep it down?". She was right. It was very loud, especially since Sophie and Johnny share a common wall. I explained to her that the boys needed to practice, and they might start to sound good after awhile (yeah, right...). The girls obliged, and got to their tea party.
I walk in Johnny's room and I try my hardest not to crack up. Simon is on the drums, just getting after it. Johnny even put his bongos on them so they would have more to beat. Johnny had changed his clothes, and put his hat on backwards. He had a broken microphone set up, and the lyrics to a song in front of him. His stuffed animals were the audience. You could FEEL the seriousness in the air. I tell them I brought snacks, and Johnny says "cool. Let's take five...". Like he says this all the time. It was nice to see them really get into the "band" so much. I wanted to stay and watch them, but I knew I wasn't welcome. I didn't even want to ask. I love to listen to them talk. I can tell the boys both try and make their voices deeper (something I never heard the older ones do), and constantly call each other "dude".
It was a nice afternoon. I was able to do bills (woo hoo...) without anyone bothering me, and I know the kids had a great time. The girls never argued. Which is a first. There is definitely a difference between boys and girls. At least with mine. Sophie tends to be on the bossy side (hmm, I wonder where she gets that from), and wants things her way 24/7. But this time, the planets must have been in alignment or something...
We switch back the kids and start dinner. Dympna calls to tell me that Simon lost a tooth while he was here and asked if I could look for it. I couldn't believe it! He never mentioned to me. Not a peep. She said it's in Joey's room somewhere, and luckily I found it on the floor. I put it in a baggie and had Joey give it to Joseph at school the next day. Crazy stuff!
Mike's mom and Wayne came over. They have been making it a weekly event now. Something I can get used to very quickly. It's nice, they take them out for ice cream and Mike and I have some mommy-daddy time. Usually take the dogs for a walk. I know that sounds boring, but we hardly ever get to do something by ourselves, so ANY time, no matter what we do, is nice.
Today I had to meet with the school Officials to wrap up Johnny's homebound stuff. I had both Sophie and Johnny, so thank goodness it was pretty quick. We went over Johnny's test scores, and a lot of official school stuff needed to make him eligible to stay home (including doctors recommendations). We all came to the conclusion that Johnny should have no problem with homebound, and when he is ready, and the doctors give us the okay, he can return.
We came home and did a few hours of school work. It doesn't sound like a lot, but kids can accomplish so much more on their own. I wouldn't say we have less distractions i.e. Sophie, the doodles, and the phone, but you can almost do a weeks worth of math in about 3 hours. We take breaks of course. I'm not THAT mean. Mrs. Hemmen is coming over tomorrow, so Johnny said he wanted to do Language Arts with her. I don't know if he REALLY wants to, or if he is just trying to get out of work...
We picked up the kids this afternoon and of course they all want to play. It's fine though. It won't be long, and Johnny won't be feeling like doing much of anything. So we switched kids again. Johnny and Simon practiced the band. I think that since they are an offical band, they at least need to have a name. I have them start thinking about what to call themselves.
Tuesday, August 23, 2005
The batteries in the camera died, so I don't have any shots of our clinic visit. Johnny still wasn't able to get any treatment today. His counts doubled (430) from last week (210), but he needs to be AT LEAST 750 for him to receive treatment. The doctors aren't too concerned, although this is not common. It could be the extra two weeks of the 6MP (chemo pill) I gave him, our doctor seems to think that it will take two weeks for his counts to come up. The rest of his numbers are "stable", still on the lower end of normal, they really haven't gone one way or another. He doesn't need a transfusion -- that's the good news. But I hope there is blood on the shelves when he does need a transfusion.
We were at the Blood Center last Wednesday (they wanted to use us for next year's campaign), and our friend Tricia gave Johnny, Sophie and I a tour. As we passed the shelves I noticed that there was no Type O to be found. NONE. Zero. Zip. Luckily, Johnny is A+, but I feel for the families who need Type "O". If you haven't donated in a while, now is the time. There is no substitute for blood, and it was the only thing that saved Johnny. Anyway, we shot a few pictures for next years calendar/website and video for commercials. I DOUBT seriously that we will be used for TV, it felt very unnatural for me, I don't think I did a very good job... Kind of the deer in the headlights look. I will keep you posted.
Back to today... Dr. Margolis and Dr. Pass are great. Normally, we would just see Dr. Pass, and once in a while see Dr. Margolis. Lately, because of Johnny's counts, we've been seeing both. They are very nice, answer all of our questions, and have a sense of humor about things (which I like). Dr Margolis seems to think that another week off ALL MEDS will do Johnny good and bring his counts up. He could have a viral infection that we don't know about (he doesn't have a runny nose, no fever, seems to be feeling fine). For the past three weeks he has had mouth sore after mouth sore. It makes it really hard to eat, and he has one on the tip of his tongue that just keeps going on and on. It could be that too. BUT, just in case, we are scheduled for a bone marrow aspirate on Wednesday of next week. The marrow is where Johnny's cancer is made -- IF he is making any. Even though they check for "blasts" or cancer, each time we go in, that is just in his peripheral blood. By the time it gets into his blood and we would see it in a CBC, it would be bad. Hence, the BMA, if he is making any cancer again, it will show up there. Both doctors feel pretty confident that it was just the extra two weeks of chemo I gave him that is making his counts so low.
They don't want to do a BMA this week, because we want to see if his counts will go up. Getting the BMA done is an all day procedure (what isn't), he can't eat before hand, and they have to knock him out pretty good -- none of us look forward to it. Our appointment is next Wednesday at 7:45AM. We probably won't be home until 5 or 6PM. We have taken him off everything, even his Bactrim that is used for pneumonia (kids with ALL are very susceptible to a certain kind of pneumonia), so now they are putting him on a special once a month inhaled antibiotic that has to be done at the clinic. That procedure isn't until 3p on Wednesday too. It will be a full day.
What do I think? I have no idea. We have great doctors, at a great hospital -- one of the best in the country for this, but who knows. I know that this is just a small bump in the road. I know. I 'think' I enjoy Johnny being his old self again. I know that starting any therapy right now would be hard for him to recover. It would just bring his counts even lower, possible transfusions, trips to the emergency room, and all sorts of scary things. I just want him to start. I didn't have a problem with only one week off, but now we are going on two. I'm just worried. Have Johnny's counts ever bounced back up in a week? Yes. They have gone from 500+ to well over 900. That's almost doubled. In a week. It's possible. It just may take him a while. I hope that it is just the extra 6MP I gave him and nothing more. The doctors said that if I hadn't given him the extra doses, and his counts were still this low, then they would be worried. I guess that is good news... The part that worries me is that he has the continuous mouth sores that won't go away, and the cells that the Dr's. Look at to see if his ANC is on the way up are stable. They haven't budged. He has been acting fine. Almost normal. Still on the quiet side, not the hard core player that he has been in the past, and sometimes he says he just doesn't feel well, but all could be because of the 6MP. Of course I can't remember what Johnny was like before all of this happened. He was a handful, but he is now. I see the symptoms he has and can only think more cancer. I think back to April and May and see some of the same signs. But, he does have cancer, and is being treated for cancer, so he will have the symptoms of cancer. It's all hard to tell.
Hopefully we will know the results by the time we go home next week. Because everyone has a small amount of blasts in their marrow at any given time, it may be difficult to tell one cell from another. Although leukemic cells are visually different than the rest, if there are only a few "possible" cells, they will send the marrow off for further testing (cytology reports). All of this is worse case senareo stuff (relapse). Best case senareo is that we go next Wednesday, and Johnny's counts are well past 750, we get our treatment, we are home that night and start the next round of treatment. If his counts are low, the BMA shows nothing, then we do further testing. What that looks like, I don't know at this point. I thought about Nuelata and mentioned it last week. I have seen the commercial on TV and they say it will boost the ANC or white counts up. It does. It RAPIDLY produces white blood cells. And we don't need that with leukemia, that's for sure! So there is nothing we can give him or he can do or eat that will boost his ANC.
On Saturday, Johnny and I met with his homebound teacher. We picked up LOADS of books, and workbooks. We are on our way to second grade. Our homebound teacher is Mrs. Hemmen, and if Johnny is able to go back to school this year, his teacher is Mrs. Holberg. Both are great. Our Principal gave Johnny the option of either teacher when he returns later in the year. Mrs. Holberg was Joey's 2nd grade teacher, and all of Johnny's friends are in that class. But if he builds a rapport with Mrs. Hemmen, who knows... Right now if I had to put money on it, I would say he goes with Mrs. Hemmen. Only because he will have had a relationship with her and will feel comfortable with her. Friends, or no Friends. But, as Johnny continues on with his treatment I really see him growing as a person. So later on, he might be confident enough to go in Mrs. Holberg's class with all of his friends. After talking to Mrs. Hemmen on Saturday, she seems to think that Johnny will be ahead of the class when he returns.
Today, Johnny was pretty cute. He got up early (8:30), came down and ate, then said "well, mom, ya ready?". I still haven't had my coffee yet, so I said "ready for what?". "School woman!". Alrighty then... We did eight pages of math, and a "spelling test". I called it our pretest -- like they do in school. He aced it. I was impressed. With both subjects. I had been very worried that I wouldn't be able to keep up with the rest of the class, but after this morning, I think he might be ahead or at least right with his class. After about 15 minutes of straight math, I could tell he was getting fidgety. I said "go upstairs and play your drums." He looked at me and kind of laughed like "ha ha, very funny...". Then I told him I was serious, and he had this look of like "what the hell..." -- it was so cool to see. I figured if I sent him to burn off some steam, then we could focus. He wasn't up there more than 3 minutes before he was down ready to study. He read every question to me, and did every problem with no hesitation. I was impressed. Of course, it was the first 8 pages of the book, just review stuff, but it made me feel good about the whole homebound thing none the less. When it gets to the hard stuff, that's when I will bring in the big guns -- I'll get Joey to help! Actually, Mrs. Hemmen will be here about 4 hours a week. We can do any days we like, she said Johnny is her priority. A lot will have to do with how he is feeling too. Now if I could just get rid of Sophie... I don't know how mom's do home schooling with all of the different age groups. I told Sophie that we will do puzzles while Johnny is doing school work. She started counting by 10's today... maybe Sophie will be the next Bill Gates.
The other day my friend asked me what have I learned about Johnny since this has all started. I learned a lot about the human spirit, and what courage and bravery mean. Johnny embodies all of those attributes. I have seen his confidence soar, and act with such maturity I can't believe it's him. He has insight and knowledge, things I wouldn't expect from a seven year old. His courage and bravery are off the charts, he is inspiring. I knew at some point, before all of this happened that because he was human (I was pretty sure of that -- I think), that, he would have these attributes. I saw glimpses of these traits from time to time, but to see them grow over a few short months has been incredible. His courage to me, is that he can go to sleep at night and know that he will wake up the next morning. His bravery is when he knows he is going to the clinic and asks what will happen, processes it, and then walks out the back door to the car, with his chin up. Or when he waves to the doctors and nurses that poke and prod him every week. His maturity is, the night before a clinic visit, he doesn't kick or scream or say he hates me for taking him there. His inspiration to me is that he has the best belly laugh around, and his drawings and sketches are always people with big smiles on their faces.
As for Joey, of course, he is incredible. We already knew that. But with big stuff like this, you can't tell what kids are really thinking. Even with Joey. Let's face it, the kid gets a paper cut and we hear about it all week. But your little brother having cancer is BIG. Luckily, I have a pretty good relationship with the school counselor, Dr. Quandal. When Mike's grandparents passed away, I told her, and she brought both of the boys in to talk to her. When I was having Johnny tested for ADD we talked extensively. And all the other times in between. I didn't even call her and she asked Joey to come and talk. She said he is doing fine and he is really proud of his brother. Joey talked about his feelings and that he knows what's going on, and the attention that Johnny is getting right now is only temporary. Like Dr. Quandal said "Joey is wise beyond his years". He knows that Johnny will get better some day too. Joey has shown courage as well. Courage is when Mike was cutting off Joey's mohawk and he didn't cry like a baby. He cried, don't get me wrong. He just didn't cry like a baby. As Mike described it to me "it was like the Indian from the "don't pollute" commercial back from the 70's, he just turned to me and a lone tear fell from his eye down his cheek", with Mike's finger going down his face, tracing a tear drop. The kid is amazing. Oh, by the way, he is selling cookie dough. Expect a phone call tomorrow afternoon. He already hit the neighbors. His goal is to sell 100 buckets, and then he will win an iPod mini.
Then there is Sophie, what have I learned from little Sophie... Pretty much, she's 3. I have learned that she is 3 and there isn't much else. I did learn, however, that she can turn a light switch on and off really fast, and that she doesn't have to stand on her tip toes to do it either. I see the mothering side of her come out when Johnny is feeling not-so-good. Of course she can't yet make the connection to cancer, but she gets him a blankie and holds his hand none the less. She is our comic relief, and after a summer of no naps, I need disaster relief for our house. The girl can make a mess in no time flat.
Our favorite nurse from the hospital is now in the clinic. Beth. I saw her today and stopped to say "hi!". Her first day in the clinic was last Wednesday. I told her that we will be here for the next four or five hours, so we will have time to catch up. Talk about service! Less than 10 minutes later she had Johnny's stuff ready to access his port. WOW! I felt bad after that, I hoped that she wasn't thinking that I was jabbing the nursing staff. They are, unfortunately, so busy there. I kind of look at it like a flight schedule when I worked at SWA. The morning flights (appointments) were on time, and as the day progressed the flights (appointments) inched farther and farther into delayed status. People showing up late, the usual stuff. Luckily, next Wednesday we have a early appointment. Things should be fairly on time. But it was cool seeing Beth there. I learned something new too, I am in charge of getting Johnny deaccessed when we leave. I didn't know that. We go to the infusion room and have a nurse yank out the port. I thought it was the nurse in the doctors office. Luckily, Johnny remembered as we were walking down the hall. It's so easy to forget for me. My mind is swirling with thoughts of next week and what will happen, how it will happen and IF it will happen. Johnny is the last thing on my mind -- or at least his port. Beth had his stuff all ready to go. We went into a procedure room and he hopped up on the bed. He and Beth were talking and Sophie whispered in my ear "Johnny has a girlfriend...". MAN she's cute!
I also got a call from someone at SWA. Her name is Cynthia and she works closely with Colleen. I can't remember exactly what Cynthia role is (sorry) but I know it's important because she works with Colleen. We talked on the phone about Johnny and how he is feeling and that she and everyone at SWA keeps him their thoughts and prayers. What a great Company! Actually, Cynthia is the one who has been sending all of the packages from Colleen, and wanted to know what his interests are. Talk about Customer Service! It was touching of her to call, it meant so much to us, I couldn't wait to tell Mike. We are touched by the thoughtfulness from our friends at SWA. Truly amazing. THIS is why you work at SWA, they ARE family. We also get a steady stream of cards from one of Mike's favorite boss', Cynthia (CY), that ALWAYS crack me up. I keep every card we get, but the funny ones have a special place next to the computer so I can always look at them and laugh. One of my favorites is "Wherever I go, whatever I do, I constantly shout "I know what's going on!" just in case I'm on some hidden camera or something", the inside says "you can't be too careful". I love that stuff. And tonight, we had a message from Sherry Perez letting us know that she and some other SWA friends wanted us to know that they were thinking about us. It's just a great place to be.
Then Mikey bought me a new bike. It is SO COOL. I love it. I will post a picture tomorrow. The local bike shop had a sale and I always go and check them out. I wanted a beach cruiser, the kind I don't have to bend over to ride (yes, I am old...). I have a very expensive mountain bike, but, since the horse incident, riding it kills me. So Mikey bought me a cruiser. Kind of a late birthday gift. It's light blue with flowers and white wall tires, fenders, the works. Like a girls Pee-Wee Herman bike. I LOVE it! It is a pretty good work out too. Since there are no speeds, you can't switch it to the easy ones. You have to pump it to make it go! I could use the exercise...
We also received a package from Joel and Crissy's sister in Washington State. What a nice suprise. I guess Joel has been telling his sister all about Johnny, and she sent something for all of the kids. T-shirts, stickers, Sophie got a Hello Kitty, and some Harry Potter Beans. You know, the Jelly Belly jelly beans that taste like boogers. Yes, boogers. Dirt and earthworms. Oh, and Johnny's favorite VOMIT. I am SO not making this up! It came with a guide of the beans, and what each flavor was. But they passed that right up. They wanted to find the "bacon" flavored jelly bean on their own. That is what I took pictures of. And yes, that is my little lady Sophie drinking right out of the milk container. Makes a mother proud!
Tuesday, August 16, 2005
Mike and the kids came home last night about 1:30AM. We all stayed up and talked until about 2 and then fell into bed. Earlier that evening Johnny said he would easily stay up to greet the gang's arrival home, but he was fast asleep by 10PM. I laid down with Sophie and Joey, it was nice to be with them again. When they first left, it was nice to have the house quiet for a while, but it gets lonely pretty fast. They talked about the trip to CA, and the airplane rides. It sounds like they had a pretty good time.
Our appointment was at 1PM today. I took Grace home and headed for the clinic. I just had a feeling that Johnny would be able to get treatment. We arrived at 12:30, and went straight to the infusion room. And waited. And waited. And waited. It was almost 2 hours before Johnny was even accessed. Once they had his port accessed, it was another hour before we went to our room and then waited for the doctor. It was about 3:30 or so, and Sophie said she was hungry. I went to the Ronald McDonald kitchen to get some cookies or something. I couldn't leave because I knew the doctor would be in any minute. I ran to the kitchen, found two pieces of bread and went back to the room. Of course the doctor came when I was gone. She left Johnny's counts, and they had only come up 80 points. From 130 last week, to 210 this week. His platelets dropped to half of what they were last week, but still didn't need a transfusion. His red blood cells were "stable" and only dropped .2. He has to have his white blood cells at 750 before he starts treatment, so just another 500 pts and we will be there!
I brought his meds that he would have started at home today, to the clinic to make sure that they were filled properly. Only to find out that the medicine that I have been giving him the last two weeks (6MP), should have been stopped two weeks ago. That is probably why his counts are so low. The doctors said that there are more intensive treatments that call for non-stop chemo (6MP), but he isn't on that protocol. So I guess that he has been getting chemo the whole time. Just not the right protocol. Tonight I stopped giving him his meds, and the doctors seem to think that this will help bring his counts up enough to get treatment next Monday. If his counts aren't up enough by Monday, they will do a bone marrow biopsy to see what could be going on. Each week they still check for any new blasts, and they haven't found any yet so I'm not exactly sure why they would need to do a BMA. But I will ask! By this time it was 4:30, and the kids were going crazy ME TOO. We left the clinic got in the car and was about to leave when Johnny said "They forgot to deaccess my port!". Shit. Park the car, go back up to the clinic, and only had to wait about 10 minutes (which isn't bad compared to the FIVE HOURS earlier) to have the nurse unhook the little guy. I'm just glad he figured it out before we got on the freeway...
On the upside, his hair is growing. But his eyelashes are falling out. His weight has been pretty stable, he is still at about 57 lbs. I weighed Sophie, because I swear she is more than him -- and she is 44 lbs. CLOSE. Maybe because she is a smaller package, but man, that kid is dense. Both of the boys were too at that age, Joey is still dense, but not at all fat. Johnny is a little pip squeak, so hopefully Sophie will be too.
Tomorrow is Joey's first day of school. It's weird. Usually, it is this big build up to the first night, but tonight, it was more or less, eat and go to bed. "I SAID GO TO BED!" Poor little guy. He will be going to school all year in T-Shacks -- or portables, or what ever the politically correct thing to call them these days is. Trailers. The school found toxic mold when they were doing some renovation over the summer. Now, even if Johnny could have gone to school in the Spring, the doctors think it is a wise idea to keep him home. I hope they both get good teachers. I know that all teachers a good, but with what is going on here and with the school, I want things to be as smooth as possible for both of the boys. But once the school is fixed, maybe they won't have such bad allergies.
Sophie will go to Mother's-Day-Out after Labor Day. I think I will do it two days a week as planned, then ask if necessary, put her in more if things get crazy with Johnny. Everything is just a wait and see plan these days!
Saturday, August 13, 2005
Johnny seems to be feeling okay. Sometimes I think that he seems so normal, and then I remember when I see his bald little head that he has Leukemia. Thursday, we just hung out and got everyone ready to go to CA. Johnny was so sad. We knew that Make A Wish was coming so I would ask him what he wanted. For the longest time he would just shrug his shoulders and give the "I dunno" look. Then he would say he wanted to go around the world. Now two days before the trip to CA, he said his wish is to go see PoPo. We told him that once Mike earns some more miles, he would take him. Just the two of them.
He said that he wanted to go to the skate park near our house. He seemed to be feeling okay, so I said yes. We show up and there are only a few kids there. He is in heaven. It's not like any of the parks in CA, but it's better than nothing! We ended up staying for almost 3 hours. I was DYING! It was so hot, but he was having such a good time I couldn't stop him. Every 30 minutes or so I made him sit in the car to cool off. He always gave me a hard time, but was thankful for the cold air. He was doing the Dogtown slides on one of the ramps. He is pretty good, and I could tell he was proud of himself too. He wanted to call Mike in CA to tell him about it. All he kept saying the whole time was "I wish dad was here!". I called Mike while we were at the park, and they talked. I could tell from my end of the conversation Mike asked if Johnny was in full pads, and Johnny hesitated. He wasn't, and for some of it, no helmet either. I tried to get his attention and tell him to LIE, but he actually has more Mike in him than I thought -- he told the truth. Now I'M in trouble! I know, I know, he should be in full pads -- probably extra if they made them, but the boy "rocks", and it's hot as @#$$ out there. He would pass out from heat stroke before he actually got hurt on the ramp. He handed the phone back to me and I "got it" from Mikey. I tried to explain, but he didn't understand. I made Johnny wear his helmet again. We only stayed for a little while longer before we both needed a break.
My dad was having a blood drive for Johnny on Friday, and I wanted us to get a good nights rest. I knew it would be a big day for us and it was. My dad picked us up about 8:45AM, the drive stared at 10AM. Johnny and I stayed up the night before making DOZENS of cookies, so I wanted to be there early to help set up and thank everyone. Dad's office had 13 people signed up, I was a little disappointed, but it was still early. My dad took us around and introduced us to everyone. We were getting people signed up as we went along. I found out that the whole building knew about the drive and there ended up being a waiting list all day long! I met some apprehensive first timers, but they still did it! My dad found out that he can donate now too. The rules have changed and he didn't know. Dad has always been a regular donor, but a few years ago his doctor told him he couldn't because of his high blood pressure. But the Blood Centers technology has changed so much, that now he can! Johnny was in a great mood that day too. He laughed and joked with everyone. He even had the giggles. He thanked everyone too. At first I had to prompt him, but towards the end, we was just yelling in his little Johnny voice "THANK YOU!".
I took my dad to Miller's Cafe for the first time. He loved it. It's right by his office, he heard about it, but never went. They have the best burgers! While we were standing in line Mike's cousin Marty walked in behind us. What a nice surprise! We chatted and caught up on things. His mom Aunt Betty, is still in CO visiting Ginger. She might even move there! One more vacation spot for us! On our way back to dad's office, Johnny said, "I wonder how the blood drive is doing?" pretty good for seven I think! So we stopped back in, and there were about 10 people on the waiting list. I think there were about 25-30 total that donated. AWESOME! i told Johnny as we were leaving that each donation saves 3 lives, and that today, about 75+ lives were saved. And he said "me too!".
Then dad took us to the farmers market on Airline. I had never been there before -- didn't even know it existed. I bought a bunch of corn, potatoes, lettuce, and honey for about 5 dollars. I wish I had know about it before I went to Randall's! Johnny started to get very tired and wanted to go home. He had a big day. Once we got home and rested for a while, he was ready to get back out. We went to the park again. This time it was just Meyer Park not the skate park. We walked around and talked about our day. I asked him what his favorite part of the day was (thinking it would be skating at Meyer Park) and he said the blood drive because so many lives were saved. He also said how nice it was that people will give blood to help others and how special everyone was to think of him. WOW. Is this my Johnny?!?!?
We went home and I made him dinner. I made him all kinds of pastas and pizzas. But he couldn't eat any of them. He has mouth sores really bad. About the only thing he can eat right now is popsicles. Poor thing. He is hungry, but can't eat a thing. I made him grilled cheese, plain pasta, anything for him. But it all hurts. Of course I don't use any butter or salt, and he has special mouthwash, but I think it just hurts too much to try anything. I even bought donuts. Nope. Nothing. They are still sitting in a bag on the counter. I made his favorite cookies. Zip. I think his taste buds are changing too. When I ask him what he wants, everything sounds good, but once he has it -- forget it.
Make A Wish came today. Erin and Jacque are our wish team. They were so nice. I liked that they separated Johnny and I. i filled out the paper work with Erin, and Jacque "interviewed" Johnny about his wish. I was afraid that if I was in the same room as Johnny, he would look at me for answers. I didn't want to seem like I was prompting him in anyway. I went on the M-A-W website and looked at kids wishes. This one kid went to the Galapagos Islands -- NOW THAT'S A WISH! I TRIED to get Johnny interested in that idea, but it was a no go. He wants to see the big Pipeline Contest on Oahu in December. I guess that wish isn't too bad either. He will still be in treatment, but we have some back up dates as well. He named his favorite surfer -- Rob Machado, and Erin said that she will try and set up some one-on-one time with him! WOW! That would be awesome! I will keep everyone posted on what's going on with his wish. His back up wish is to go to Orange County to see PoPo (and surf of course). I told them his treatment comes first, then everything else.
Tomorrow is another blood drive at the church. I am going to try and go up. I promised Johnny I would take him to G-town to pick up some ramp pieces (not the kind our friend took). That way he can practice some tricks at home. I guess technically he hasn't had any hard core chemo for about 6 weeks. The spinal tap chemo has stayed in the spinal fluid, and the oral stuff is pretty light compared to the IV chemo he will start soon. I want to remember these "Johnny" moments and give him as many as he wants, so when he is down and out, we will have something to look forward too when he is off everything.
Monday, August 08, 2005
Today Johnny had his clinic visit. He was supposed to start a new part of his protocol. A week (pulse) of dexamethasone, an IV of Vincristine, and another chemo drug I can't remember. Our appointment was at 11:15. I checked us in, and got called back to the front desk. We don't have insurance. I was very calm, we paid our COBRA, I know we have insurance, this is just an error. The guy who is doing the UnitedHealth Care insurance forgot to include all of Mike's dependents. So after HOURS of Mike on the phone talking to United, Cereality, and TCH, Johnny finally got to go get treatment. Whoever said, "just pay 25$ or what you can...", never had to get chemo. The doctors won't even let you in the door unless you have insurance. I can't imagine not having it, or paying for your treatment. Besides, the doctors are saving my son's life... I don't want them mad at me for not paying for treatment.
After a three hour wait to get the insurance straightened out, we were finally cleared to get treatment. Johnny wondered if his friend Caiden was in. Today was Caiden's last day of treatment! They met at camp, and were in the same cabin. Caiden is 8, but he had different type of leukemia. He had T-cell -- it's much worse than Johnny's. It was good to see him ending his treatment and see him get on with his life. He will still have to go to get checked out every 3 months for a few years, but at least he's done with the big stuff. He gets his port out this week too! We sat with his family and talked until they were ready for Johnny. Caiden has a lot in common with Johnny. They are both the cream filling. That's what I tell everyone. Johnny is the middle kid (the cream filling), and Joey and Sophie are the cookie parts. All are good by themselves, but even better together.
They took Johnny's blood, we went to the room, and waited for the doctors. The one question we had for the doctor was when he could get back in the water. She told us as long as his counts are good, he can. He can surf and skate -- whatever he wants -- as long as his counts are good. Right now he can't even go to the movies his counts are so low. His ANC (white blood cells that fight infection) are 130. A week and a half ago, they were 1900. No one knows why they dropped, and there is nothing we can do about it. You can't transfuse someone for low white cells. Red blood cells and platelets-- yes -- white -- no. There is something else they look at within the white cells that can clue the doctors in on "when" he could get treatment. It's another part called "segs", if that number is high, then that means the ANC count might be on the way up. When his ANC count was 1900, his "segs" were 65%. Today his ANC is 130, and his "segs" are 5%. Our next appointment is for Monday and we will see where he is at. He has to be at least 750 to get treatment. The reason he has to have high numbers is the chemo knocks you down so much.
Johnny is feeling fine, acting fine, and pretty much raising hell whenever he can. Playing the drums, bongo's, guitar's and pretending to skate using his hand board. I did have the doctors check his port. He has complained about it a couple of times, and it looked slightly pink this morning. It is probably nothing, just a mom over reacting. They are doing some blood work on it and if something comes up, they will let us know. Once they saw it, they didn't seem concerned at all, but I still made them check it. Usually when someone gets an infection, it's from within the body. Not a cold or flu, but the body rejecting something (like a port), or reacting to something (like chemo). I will keep you posted!
Well, actually no blood. But that is all I could think of... Johnny wanted to go for a ferry ride on Sunday. We picked up Grace in the morning and headed for the beach. We planned to take the Bolivar Ferry over to the peninsula, stop at Moody Gardens, and spend as much time at the beach as possible without actually having to get sandy.
We decided to go to Moody Gardens first. There was a dinosaur exhibit that we all wanted to see, and Sunday was the last day before it was gone (or extinct). No matter what we really want to see at Moody Gardens, we always have to spend at least 1-2 hours in the Aquarium. It's our favorite exhibit. We then made our way to the dinosaur exhibit. Boooriiiiiing. I'm glad we didn't have to pay to see it (we have season passes). At first Sophie was scared of the dino's, then once she saw how badly they put the whole thing together, she had no problem. They had a movie that was called "Escape from Dino Island", that we thought would be good. It was an "action" movie. The kind where you get strapped in, and it feels like your actually moving. OH MY GOSH! Pass the Zofran! I wouldn't recommend this ride to anyone who gets motion sickness, has a hangover, or might have a hangover. We were begging Johnny for his Zofran. He wouldn't share...
It was getting late and we thought we better do the ferry ride next. It looked like it might rain, but we all wanted to go anyway. The drive was nice. The kids were crazy, but having fun. I much rather hear them laughing and cracking each other up, than crying and screaming. Joey and Johnny were talking to each other on walkie talkies. Yes. walkie talkies. Yes, we all were in the same car. The boys were sitting right next to each other. They did turn their heads and cover their mouths so the other couldn't see them though. I guess that is why I called it Sunday, Bloody Sunday. Mike was about to blow a gasket. But he didn't say anything, he knew the kids were being good, and it's only one day.
We had to wait about 20 minutes to get on the ferry, the ride itself is about 20 minutes too. By the time we made it on the ferry, the clouds had cleared, and it was a beautiful afternoon. It was already 4PM and I was getting hungry. We stopped at the first place we came upon. It was a restaurant called "the Outrigger", about 30 minutes from the ferry. Very down home kind of place. It was cute, the owner had a fake deer head on the wall, that must have had a microphone in it, because he was talking to the kids from across the room. It was obviously fake, the kids knew it, but when it started talking it blew them away. Grace was the only one who figured it out. The owner was close enough to hear the kids answer his questions, and they thought that was the coolest thing. I went up to the owner later to thank him, and noticed he didn't have any teeth. THAT'S how down home this place was. I wouldn't go there again, except that the service was really good. The food -- not so much.
After dinner, we loaded back up and headed for the ferry. This time the wait wasn't so short. It took about an hour to get on. Most of the time we were daring Johnny to take a leak out of the van door. I told him I would hold his shirt so he wouldn't fall out. Most of the time we waited in traffic we just sat in the van and didn't move. Then I noticed he had an empty Welch's' Grape soda bottle. I told him to use that. He chickened out once I told him HE had to hold the bottle. The laughing didn't help. I tried to make him go out the door (I knew he wouldn't do it), but no luck. Hey, it passed the time for us... Then as we approached the ferry, Mike spotted Porta Potty's. He finally got to go! We got on the ferry and it was a beautiful ride. Schools of dolphins followed us. TONS of jellies -- yuck! Awesome sunset. Our car was on the "outside' lane, so Mike rolled down the windows so he could listen to Jack Johnson. Mike's dream is to live on the Island full time. I hope we can some day, it was so relaxing. There is just something about it....