Friday, June 29, 2007
Mike and Sophie -- I love this one
Johnny designed his board and colored it with special pens a friend sent him. He was pretty stoked with the results.
We've been busy trying to fill every minute with as much summertime fun as possible -- when we can. Johnny and I are still recovering from the past month. On our good days we do it up big -- surfing, movies, dinner at friends houses, whatever we can!
On June 15 Mike took Johnny in for the works. His counts were okay -- ANC 880, Platelets 248, and HGB 11.2 -- no transfusion needed. Johnny's back swelled again from the spinal -- actually from the lidacaine (numbing meds) they give him prior to the spinal. Both doctors came to check him out and confirmed that was exactly the problem. Next spinal they won't numb him. Which means Mike and I will ask for more meds to knock him out (it's more for OUR comfort than his...).
Right after his big chemo day I thought he was going to need a transfusion, so did Johnny -- he was talking "what-if's" about getting transfused. I took him into the pediatrician's instead of waiting for him to spike a temp, which then means an ER trip. When the results came back that he didn't need blood, the look of shock and confusion on his face was priceless. He even asked "you sure?", shrugged his shoulders, hopped off the table and headed for the door. I guess he just felt like crap because of all the chemo...
Two days later we were all getting ready for a big BBQ/silent auction for Joey and The Junior Guards. At the last minute I thought I should stay home and rest my back (see! I am trying to be good!), I noticed Johnny laying down too and asked if he wanted to stay with me and he said 'yes'.
Big warning sign to Mike.
He took his temp and it was 103.1. Mike took the kids to dinner and I took Johnny to the ER. Luckily, all the tests came back good, they gave him a huge dose of antibiotics and we were home by midnight.
Mike and the kids had a BLAST at the BBQ. Joey is LOVING Jr. Guards, and is doing really well. I'm glad he decided to go, he is meeting kids from the Island as well as strengthening the friendships he made last year. He's is finally starting to like it here. The move to Galveston was the hardest on Joey -- he left all of his friends that he's had since Kindergarten. He would ask us to take him back to Houston to spend time with his friends. Now, he his bonding with kids here. WHEW!
Jr. Guards -- If Joey keeps it up every summer, when he is 16 he will be able to guard for $$$!!!! WOO HOO!
About 3am Saturday morning Mike checked Johnny's temp, it was 105.1 -- I didn't know thermometers went that high!!! I told him that since he just had a huge dose of meds, give him some Tylenol, unwrap him (he was sandwiched between us) and let's see what happens. Luckily it came down. We kept him on a tight schedule of Tylenol every 4 hours and didn't have to make another trip to TCH until our appointment today -- WOO HOO!
Today's clinic visit was just for labs. Johnny's counts are 'okay' again. ANC 720 (just high enough to surf!), platelets 175 (big drop from last time), and HGB 9.5. Johnny's been good about doing his part to keep his counts up. Eating eggs (not a dozen at a time though....), and drinking milk. We're not sure if it makes a difference, but it seems to -- at least to us.
Kathleen came in Saturday for my FORTIETH BIRTHDAY! WOO HOO~!!!!! Mike and I went out to dinner for the first time since our anniversary in September -- it was SO NICE -- just the two of us. And we tried very hard not to talk about the kids -- I think we did a pretty good job too. Sunday Mike set up a small surprise party at one of our favorite hangouts -- Yaga's. It was fun -- the margarita's were nice and strong too... aaaahhhh... 40 ... already off to a great start.
Monday was my real birthday -- it was raining, perfect for relaxing/recovering at home.
Sophie yesterday at the beach -- she wants to surf like the boys SO bad! She's wearing head-to-toe hand-me-downs from them too
When we got to the beach we saw some friends of ours. Rhonda took Sophie out. She loved it! The boys thought they were so cool because they paddled out to the first break. I knew most of the people out there and they kept an eye on them. It boosted both boys confidence to 'hang' with the big kids.
The boys with Anne. She's coming to CA this summer with us again.
Tuesday, June 12, 2007
Friday was our Med Center visit. Mine was rescheduled, but they forgot to call. I feel fine, I have been very careful during my recovery -- actually trying to 'milk it' as much as possible. Not lifting anything, not sitting too long and resting when my body tells me too. -- Okay, that's the stuff that I'm supposed to be doing anyway, but to me, it feels like I'm milking it.... On the list of things that I can and cannot do it says that I can walk as much as I can tolerate so I went to practice last Saturday. Walked 6 miles. My neck/back is fine, it's the rest of my body that is mad at me -- my butt, legs and feet. I officially declared myself out-of-shape.
There are two teen-aged girls that are on the Clear Lake HS track team. They run. Fast. Don't even break a sweat. I look at their smug perky little face's and think -- 'it will happen to you too young grasshopper, time is not on your side either'. They are really sweet girls though... I remember being their age and looking at people my age (almost 40) and thinking -- "gross! I will NEVER let my body get that out of shape -- what are those women thinking! How could they let themselves go like that?". Fast forward 20+ years and here I am! But I'm not going to kill myself trying to catch up to the teenagers. I'm just trying to finish before the next oldest walkers (60 and proud of it!). Actually, I think I did pretty well for just having surgery and not really any form of exercise for the past two years. Luckily, at this event/marathon there isn't a time limit to finish!
I guess since this is JOHNNY'S BLOG, I will update you on him -- the sick kid. Oh yeah!
Two weeks ago he needed more blood. He's doing better now. Not great. But better. I took him last Friday and his counts came up slightly. Nothing to get excited about, except for the fact that he didn't need a transfusion (HGB was 8.6, they transfuse at 8). That part was exciting. His energy level is still low for him, which is fine, I prefer him to rest as much as possible. His ANC went up from 400 the week before to 960. That is good too!
Dr. Dryer upped his meds to 50% of what he was on before which was 66% of the protocol(they took him off meds last week to see what his counts would do). Mike takes him on Friday for big chemo, spinal, VCR and pentamadine. This chemo isn't count dependent, Friday will be a go no matter what -- unless he has major mouth sores. The methatrexate (IT MX) spinal meds for some reason exasperate the sores. It's always a crap shoot with this kid, who knows what Friday will bring.
I'm just glad Mike takes him -- I can't sit for more than 30-40 min., but mainly because Johnny's face is sunburned.BAD. Bleeding bad. yep. sure is. NO ONE will let us off the hook for this one. We know better. We have no one to blame but ourselves -- the likelihood of secondary cancer during treatment is low, but for ANYONE, the more you sunburn, your likelihood for melanoma increase expediently. Even more so for Johnny. Mike picked up some Zinc Oxide -- the stuff from the 80's that everyone wore on their face with their Body Glove bathing suits (not ME of course) -- it comes in all sorts of 'hot' colors -- pink, blue, yellow and boring white. THAT'S what he HAS to wear everyday now. It's 100% UV protection.
Thank you so much to everyone that has donated to my website for the marathon. I can't believe how quickly I reached my goal! I wasn't sure if I should stop fundraising or keep going, I didn't want to seem 'greedy' (even though it's going straight to the LLS). A friend of mine at the Blood Center, Elizabeth, who had/has lymphoma/Hodgkin's said something that makes me want to keep going, I won't paraphrase because what she said is so eloquent:
"I feel so blessed when I am able to share my story or Johnny's story with others. I am alive and healthy and I feel like it is now my calling to spread the word. I know that might sound trite but it is how I feel. When I was going through treatment I kept saying that I needed to do more than what I was doing at RMH. I knew I wanted to be a voice for those who did not have one, those who did not know how to be heard and for those who were too sick to try to be heard. I want to do this to thank those who came before me and those who will come after me. It is a battle too many of us have to fight. This affects not just the patient but their families, caregivers, friends and co-workers.".
I wish I could say that it came from me, I thought of it first, but it's really how I feel about raising money and awareness for the LLS -- MAW and the Blood Center included too.
With that said, I am still looking for donations and my goal is to be one of the top fundraisers from Clear Lake, Houston or the Great State of Texas -- okay, my Aunt Marti is cringing with THAT remark (we're from MI). With each donation it tells me that you are supporting me, Johnny, Elizabeth and all the kids at TCH. Someone said that I am doing the hard part (walking 26.2 miles!), but really it's all of the people lying in hospital beds getting spinals, hooked up to IV poles getting chemo that are doing the hard part. We're on the sidelines, trying to make it easier for them.