Saturday, June 30th; "Mom, when will I feel better?"

Okay, just so you know this is not going to be fun. After a very long day Thursday, we decided to take a family walk w/ the double stroller. Alex really, really did not want to go but by the time we made it to the lake he was saying, "this was such a great idea, I'm glad we are outside!" So life was good. Then about half way around the lake as Zoe and Dad are playing with Roxie in the grass and Alex and I are tagging behind, Alex asks, "Mom, when will I feel better?" OHHHH, the stabbing pain. Nooooo, please don't ask me that! Please, oh please! I'll buy you anything, but just don't ask me that!!!!

I stumbled all over my answer, batted it over to dad who looked like a deer in a semi's headlights. And was completely, unable to comfort Alex or ease his mind. It had to be one of the worst feelings, I have ever experienced. But, we went on, and as kids always do, were brought back to the moment and had a very enjoyable time. I must say the pain is still there, and even more so when you hear what happened yesterday (the following day).

So late Thursday night, I realized that Alex had not been to the restroom all day. Then I did a mental count of how much he had consumed in the week; and it did not add up to much. Since Monday, Alex has had a very tough week. Loss of appetite, symptoms reappearing, sleepiness, and horrible headaches. We contributed all of this to the lack of steroids, since Monday was his first day without them. Well, when we called the docs early Friday morn, they of course, wanted to see Alex.

Well, after spending a full day at the hospital, we learned that Alex's brain ventricles have filled with fluid due to swelling around the tumors. This swelling could be due to necrosis, growth, radiation. No one knows. But his csf (cerebral spinal fluid) is not being allowed to flow freely out of his head. They gave him high dose of steroids via IV. Fluids via IV. And sent us home with more steroids for the next few days. They said if Alex has any problems breathing, is sleepy and/or has worsening headaches to call and bring him back to the hospital. Well, I hate to say but he had a horrible night and breathing seemed very labored. So back we go.

As you may guess, I am exhausted. The kids had a play date scheduled and Alex really wanted to get out of the hospital and go, so STeve and I went to a local bar/restaurant and proceeded to drown our sorrows. We chose beer, chicken wings and black and bleu burgers with fries. The owner even bought us a round of shots! Oh Lord, please help me. After losing 15 pounds eating all the right stuff and no liquor, my body rebelled against me!!! And just to add to the pain, my labwork showed that I have low progesterone. Which explains why my "Aunt Flo" keeps showing up every three days!!! So exhaustion is not a big enough word for how I feel. I have no clue how to get through this day! But I will.

I have to run, Alex's teacher is coming for a visit. Have a wonderul holiday and God bless.

G

Necessary Ugly, June 26th

Necessary Ugly

She was with her teens,
one boy, one girl
the american dream!

Her venom was viscious,
It filled the air.
She could have killed,
had we not been there.

She never noticed,
she never saw,
my radiation swollen young boy,
nor my awe.

I thought how wonderful,
it would/should be
to be mad about clothes
and not mad about "C".

How lucky she was;
how carefree she could be
but at this time
It was necessary to be ugly
and to just not see.

by: Me

Friday, June 22nd

Hi all,

Well so far so good, as Alex comes off the steroids. If all goes well this weekend, he'll be taken off completely on Monday. He has been spending his days running errands with me or working puzzles. He has even attempted a 500 piece puzzle, but sister (now renamed: Two) keeps pulling all puzzle pieces off the table and onto the floor. So Alex is a bit frustrated. Zoe (I mean Two) has really been doing a wonderful job of testing those limits. Her teacher and I agreed this morning that she is destined for greatness. Not only because she has that aura about her but that she absolutely, positively, won't settle for anything less than what she wants!! And she wants alot!! Whew, I'm tired just typing about it.

Nonetheless, she's a keeper and we love her so. Tomorrow she should have a wonderful day at a local charity's annual picnic. There will be animals and carnival like rides, etc. It should be a real treat. Steve and I have been invited to a play (our neighbor is in it) so we have a babysitter coming over and we plan on having a date night!! There may even be a drink or two involved. Whoo Hoo living the big life now!!

On the subject of BIG, so far Steve has lost over 19 pounds and I have lost over 11. That's 30 pounds GONE since we started this program!! It is still very hard to manage the food restrictions, but we are getting the hang of it. Wish us well.

Okay, well things are moving forward with the fund raisers! I hope you all plan on coming! We would love to have you!

Have a wonderful day and God bless!

G

"Who is in the stroller?"; Tuesday, January 19th pt. 2

So Alex is doing pretty well coming off the steroids. He has had a few (2-3) chokes while drinking, but nothing too traumatic for him. He does not want to use his "transformer". I am not sure if it is just too hard still or the unease he feels with it; buut he would rather walk without it at times. The staff at the clinic said "to not force it"; that he would walk again in due time. So I think I will lay off for a while. Yesterday was four weeks post radiation, and so far no sign of the radiation solemness. Alex loves doing his puzzles; and as soon as we can find it, will be building all sorts of things with his new "Lego game". This is a game that he has played at OT and really enjoys. I hope to go by the toy store after my dental cleaning today to pick one up. Super T did not have one. Besides that, Alex is still decreasing his meds and if all goes well (fingers crossed!!!) will be taken off all steroids next Monday. I am tentatively optimistic at this time. It is so scary to get your hopes up.

Zoe is loving school. Steve usually drops her off in the morning and she is so happy when I pick her up. Her vocabulary is growing each week; but she has learned to pinch AND she tried biting today. She loves dismantling her brother's puzzles and listening to him wail at her when she does. I have tried to explain to him that he is making it fun for her to torment him by giving such dramatic responses, but that does not help him much. She is a very typical two year old. She has to test boundaries and figure out how this world works and what she can get away with in it.

We set up an inflatable pool for her this weekend and she loves to go in and out of it, pour the water, take the toys in and out. I have become a nervous wreck because I can't see her if I am inside. I have stopped letting her even go out back unless someone can watch her. I may just have to take the pool down to save my sanity!!! Steve thinks I am crazy but I know kids drown in kiddee pools and can't tolerate the idea of that happening.

So Steve and I have decided that this is hard. Every little second is hard. I can't imagine how a four year old deals with this stuff. I am having real problems and I supposedly have some coping skills (aka: meds!!!) Today, while picking up Zoe, we saw a former classmate of Alex's in the lobby. He asked me, "who is in the stroller? I told him, "Alex". His face said it all. I said, "he looks different huh?" and he replied, "why?" to which I said "his medicines".

I showed Alex's pic to a friend the other day. Her eyes started welling up with tears. She admitted that she had not come around because she was "scared to see him (scared of her reaction)." I so understand this, but explained to her that "this is the easy part." That I will take Alex any way I can get him and as long as he is improving and smiling, life is good! I think about our friends that lost their boy to brain cancer and my mind reels at how incomprehensible that pain must be. I can't (and won't) imagine living without Alex in my life. I don't know how. He keeps me going everyday.

I wondered aloud to Steve tonight that I may be shutting down emotionally. That it is just too hard to really "feel" this. I asked him if our kids were suffering and not feeling loved because of this shutdown. He said that the kids definitely feel loved. So I then proposed the question, "do you think they miss my affection?" To which Steve just nodded and frowned. We then shared a long, knowing stare into each other's eyes.

I hope to work on this in the next few days. To really stop (days are flying by) and share an embrace with the kids. Again, I am scared to break down in front of them, but I'm starting to think more damage may be done by "just going through the motions".

Okay, so Saturday was the one year anniversary of Alex's diagnosis. Can you believe it has been a year? It feels like five to me! We went to see "Ratatouille", Saturday night and loved it. I can't remember the last time I heard applause at the end of a movie, but it is a good story and directed Brad Bird, who also directed "The Incredibles". I highly recommend it, just be aware that it is two hours long (long for a kids' flick).

Sunday, was Father's day and Zoe gave Steve a hand painted frame with her picture inside. Alex got his dad a set of David McCullough books and I got him concert tickets to two of our favorite artists that are coming to town together! Can't wait! We then headed out for the ball game. Alex had been talking about this game all week, and after only ten minutes in our seats, he was ready to go. The noise was just too much for him. Steve and I took a day off from our new "lifestyle" and enjoyed some beers and brat. We told Alex that we would leave after the fifth inning and so we did. It was fun but since Alex did not have a good time, we probably won't be going back with the kids for a while. Good thing anyway, since I put on a pound after the indulgence. Get this! Steve lost weight and absolutely ate more than I did by far!!! It is just not FAIR!!!

Okay, well I hope I can sleep now since these posts are done. I know every one's summer is moving right along. Send a comment when you can. We feel your presence and well wishes everyday, in every precious smile.

God bless!
G

"What is dead?"; Tuesday, June 19th

Hi all. So it is 2:40am and once again I cannot sleep. I do not know if it is life, stress or all of the "metabollic boosters" this new "lifestyle" has us on but I don't do well without my rest! Anyway, I have had a few posts in my head for a while now so I thought I would just go ahead and get them done.

So here is a conversation that occurred last Tuesday or so. I had asked Alex to help me spot a mailbox on the way to pick up Zoe at school. He wanted to know why. I told him that I had a Father's Day card for granddad. Alex paused and said "but Grandpa is dead." My mind wondered whether he meant my dad or Steve's (who just passed in January). Then I realized that Alex no longer has a biological granddad anymore and that it did not matter which one he was speaking of. I then told Alex that he was right, but the card was going to Randy, my step father and his granddad. Then I asked him, "do you know what dead means?" He stopped playing his handheld game and looked up and said "too old?"

Well, I thought about that, and had to agree. So I told him "yes, too old is exactly right." What else could it mean?

Monday, June 11th

Well, the weekend started off with several spa treatments for me. I went to the Coldwater Creek Spa and cashed in my Mother's Day gift of reflexology, facial, massage and pedicure!!! It was awesome, except by the third treatment (facial) I was ancy. My body is not used to sitting still for that long! I really had to force myself to just relax and enjoy it! I highly recommend this spa! It was excellent! A real treat! Try to get there asap!!

Alex and Zoe had a pretty good weekend too. Alex and Steve went to see Spiderman 3 on Sunday, while Zoe and I ran errands. Alex had a choking spell Sunday night that really freaked him out. He has not choked in so long and avoided food and drink until late this morning. We did our best to reassure him that it was just a one time deal but he was so scared. It was heartbreaking. Fortunately, he seems to be doing better. This evening, at dinner, he stated "I think I am doing better. I'm not choking anymore!" We agreed and told him that he most definitely is doing better!! The only bad news is that his drool is back. He brought it up this afternoon; so I know it really is back. =0( My prayer is that it goes away soon and that as he decreases his steroids even more this week that no other symptoms return. Oh PLEASE DEAR LORD, let Alex have a good week, month, summer, YEAR, LIFE!!!

Zoe Grace is just loving school. She came home today and went to the bookshelf and sat down and started "reading" the book. Her teacher said that she sang a verse all by herself today during "circle" time!! She EVEN wanted to wear her big girl underpants!!!! YEAH!!

So Alex has discovered puzzles!! He loves them and is very good at getting them together. I can't tell you how many puzzles we have done and redone over the past week. Right now, he is doing 100 piece puzzles for 5 year olds! He is very proud and it is fun to do with him!

Steve and I were able to go out to a movie on Friday night. We saw "Paris, jetaime" (I think I spelled that right.) Anyway, I can highly recommend this movie. It is a "compilation" film consisting of 15 vignettes (mini-movies) by different directors all set in Paris. It is a real ride! One vignette, is about a mother coping with her young son's death. OMG, I nearly lost it in the theater!! I cried, ALOT, but was able to pull it together. It was so intense! Anyway, not all the vignettes are sad and I think this was a very enjoyable way to spend an evening.

So Steve and I have completed one week on the Slim 4 Life plan. We have lost a combined 19.25 pounds!!! Can you believe it? THis is a serious lifestyle change!! No alcohol, no sugar, low (I mean low) fat and carbs and lots of supplements!! One of the supplements is an intense "energy booster" and the reason I am doing this blog at 10:47p and not sleeping right now. You can just feel yourself zing!! Anyway, I lost 7.25 lbs and Steve 12; so we are stoked. It's weird, I don't miss all of the things that we can't have. Maybe for a second or two but then that goes away and there is something else to do. The food consists of lots of fish, veggies and fruits. The fruits are sooo yummy too!! You eat all during the day so you never really are hungry. But miss a meal and you suffer!!! STeve and I have experienced some low blood sugar moments because we did not eat when we should have. That was not pretty. We'll get better and hopefully smaller!!! Wish us well!

Well, that is it. I had better get to bed. I hope you all are enjoying your summer. Drop me a line! I miss you all!

God bless!
G

Tuesday to Wednesday June 5 & 6 (Email for Evite)

Well, we are all still here. The world has not stopped spinning and everyone's life just keeps right on going (if you are lucky!). Friday evening, while relaxing outside, Alex decided it was a good time to shave his head (I asked first, of course.) He did very well, we were all very casual about the whole thing and he looks much better now. It was weird not recognizing him in the middle of the night, but that did not last long. This pic is Alex with another "cool dude" we know!! Aren't they too cute? Alex is not as small as he looks in this pic, the guy is just really, really tall. Not to mention a great person and a good friend to all of us.

Steve was ill over the weekend and we were not able to use the baseball tickets Make-A-Wish provided to us. I was really looking forward to the game but there will be others. Hopefully we can use the tickets we have for Father's Day!

Alex's doctor said he looked great and was showing improvement. So much so that , he does not have to return to the clinic next week if all goes well this week. His meds have been reduced even further and so far so good! (knock on wood, fingers crossed!!) He has lost some muscle tone in his right leg and is hyper-extending his knee every time he steps. Looks very painful and he may be fitted for a new brace soon. A walker (transformer, as we call it!) has been ordered to help him with his stability, mobility and independence for the time being until he regains his leg strength. Hopefully that will be soon.

So Zoe started back at school Monday. She does not enjoy drop off but seems to do just fine afterwards. Alex and I drove by on her first day, after leaving the hospital, and watched her on the playground. She seemed to be okay. She was sitting on a bench taking off her shoes. Zoe has a love/hate thing going with her shoes. (I blame Nadine for the whole thing! Whenever she would visit, she would immediately remove Zoe's shoes and start playing with her "piggies".) Tuesday morning when we arrived at the school, Zoe instantly wrapped her body around my leg and demanded to be carried. She really did not want to be dropped off, but the teachers say she had a good day. I can tell already that this experience will be good for everyone. So far she has fallen asleep in the car before we are two blocks from the school.

So my dizziness has not been as prevalent in the last few days. I wish I could say it is gone completely, but it is still there. I called for my lab work and they said it could be another week or so. My hormones are in California right now! I want to be in California!!! A change of scenery would be great!! We have talked about a family vacation this summer. Somewhere just the four of us can go and relax and really just have some down time from appointments, scans, meds, stress!! Doesn't that sound great! Let's all go on vacation!! (Just not together!)

Alex's weight is up to 48 big ones!! He is now 41 inches tall (that is one inch of growth in the last year.) His starting weight was 40 pounds and his lowest was 32. He is getting very hard to carry around and I am looking forward to him gaining some strength and independence with his mobility.

So, speaking of weight, Steve and I are in day two or our three day "cleansing phase" of the Slim 4 Life weight loss plan. Steve has been asking me if I wanted to do Weight Watchers again, and I have adamantly stated "NO!" I lost one hundred pounds with WW over a decade ago. Unfortunately, I did not NEED to lose 100 pounds. The first 50 came off the "right" way and the last 50 I just starved off. So I say that I lost 100 pounds for about an hour and then the weight started coming right back on! After my last WW experience, and several weeks of off and on plan; I realized that I had gained and lost over 20 lbs! (Key word there is gained!) So I quit. I decided it was better just to be fat then to have my weight go up and down and down and up and up.

So I found this plan and went for a consult. I have no idea if it will work or if I will work it, but it is worth a try. I know taking on weight loss at a time like this probably does not make sense to you; but the stress of getting heavier is much greater than attempting to get control over our lives and eating (believe me on this one!!) So wish us luck. We have another day of detox, an education seminar tomorrow night and then (if there promises are correct) Steve will be done with the "weight loss" portion of the program in 26 weeks and I will complete it in 36 weeks!!! Sounds too good to be true, but maybe, just maybe, we can put this together and get this monkey off our/my back(s)!! I'm so sick of hating myself and my body. A diet can't be worse than that, can it?

Okay, let's end this on a positive note. The upcoming fundraisers are going to be fantastic!! There are some incredible women working very, very hard to put these events together and I am absolutely overwhelmed with their efforts. If you did not read the "Save the Date" blog, here are the dates and information again.

Friday, July 27th 6p - local country club
Dinner, Dancing, Live and Silent Auction
(on-line bidding will be available)

Saturday, August 4th-9a to Noon - local park
Family fun pancake breakfast with a Silent Auction as well!

If you want an evite please write to fightthebump@comcast.net and I will make sure you get one. Or if you want to donate a product or service, we can use those too! I am currently creating a myspace page for all of this info so you don't have to keep reading these horribly long blogs!!

Okay, digest all that, and get back to me!! =0)

Have a wonderful day!
God bless!
G