Tuesday, August 21st

After a sleepless night, Alex is being admitted to the hospital. I have been concerned about dehydration for several days now, but since he peed yesterday I figured all was okay. But this am he said his side hurt and he could not pee. So after being catheterized to relieve his bladder and getting 240 cc of concentrated urine, the docs are afraid Alex may have some nerve damage that keeps him from peeing by himself. We also fear a kidney infection.

I have been told that he will be in the hospital for at least two nights. He has to have a urology consult, a rehab consult and kidney imaging and some other stuff that I have forgotten now. But none of it sounds fun. They said Alex may never be able to relieve himself and that I may have to learn to catheterize him myself. That is just not right! When will the friggin' good news start! When will this turn around! I want Alex BETTER!!!! not worse!

ARGHHHHH! This is definitely not going to help my cortisone and insulin levels!!!

Wish us luck! God bless!
G

Monday, August 20th- G's Diagnosis

Well after three missed appointments, I finally made it to see the compounding pharmacist my doctor recommended I visit after my blood work results came back. After some review, she said that my blood work is that of an exhausted person. Normal cortisone levels should be about 22 in the morning and drop to 4 at bedtime. My mid-morning level was 5. So they call that adrenal fatigue.

She also found that I have high insulin levels so last week when I did not feel like eating right and ate more carbs than usual, I suffered some serious consequences like feeling dizzy, achy and short of breath.

So she wants me to stop my bc pills which cause low progesterone and estrogen levels, depression and shortness of breath. She also said I need to rest, lots of rest, and then more rest. She recommended gentle exercise and some weight lifting. She gave me a book to read so that I can ask some informed questions at our next visit.

Overall, she summed me and my symptoms all up. I am to continue the Slim 4 Life program just without the metabolizers. She said the low carb diet is my ONLY option at this time and losing weight is essential to my long term success.

I am happy to have a diagnosis and a plan. Now to get educated on all of this and implement some changes. Wish me luck!

God bless.
G

Sunday, August 19th-Mommie Dearest

Well, here comes another week! Last night Steve and I had a wonderful evening just enjoying each other's company and some great food and wine! It was soooo incredible! I almost feel like a new person!


Steve got on a plane this afternoon and we are all missing him horribly. When we pulled into the garage without Steve, Zoe became very upset and started crying "No daddy! Go back! Go back!" Alex has expressed how much he misses his dad as well.

At bedtime, I read the same bedtime story we have read every night since Alex's birth (and even a few nights before that!) and then Alex asked that I lie down with them for a little bit. I started holding Alex's hand because he was picking his nose. Alex's nose looks bloody but it is really just the remnants of a wound that just won't heal due to the radiation and steroids. Anyway, I had put a band aid on his "picking" finger just to give his nose some time to heal. So as I am holding Alex's hand, he says "Mommie, you know, when you hold my hand I can't pick my nose." "Yes, Alex." "Mommie, no matter what you do, I will always hold your hand."

Uhh, well that was about the best thing I have heard in a long time. I have been tormented about how horrible I have been with the kids recently. Everyone says I am too hard on myself and that I should just relax but I think all moms know that there is always "more" we could be doing. ALWAYS!! So when Alex said that, I realized that even though I have completely messed up at times, he still just wants to hold my hand "no matter what." Ahh, peace. Joy. Happiness. My heart is full!

Okay, I don't know how long this feeling will last, but I wanted to get it down before it fades into a distant memory.

God bless, take care, send energetic, soothing energy please! (Is that an oxymoron? Is there energy that is soothing and energetic?) Oh crap, here I go again!

=0)

Friday, August 17th

Well there was a visit to the ER yesterday but it was not for Alex. I had to go. I had been dizzy since the night prior, woke up with body aches all over, and by 10:30 was short of breath and scared to death of passing out. I called my neighbor who came over and we made arrangements to get me to the ER. There, they tested my heart, blood, urine, blood pressure, blah blah blah and by 5:15p I was sent home with the diagnosis that I am a stress case and need to have a stress test asap. I got a good night's rest but soaked my pillow with sweat. I really don't know what is going on; but I do know that in the last week to ten days, I have not been myself. I have been short with the kids, unable to sleep, unwilling to eat, and just plain weary. I have described it as "my inner strength has vanished". That well, that we all dip into has run dry! I really wanted the docs to focus on the low progesterone diagnosis of a few weeks back but they were more concerned with the recent chest pains. So we'll see. I'm looking into yoga and Steve and I will be having the "should we get rid of Roxie" talk very soon.

Tomorrow is our wedding anniversary. It has been 50 years! Oh, I mean six years that feel like 50! Our good friends are taking the kids for the night and Steve and I hope to have dinner, drink(s) and then sleep ALL NIGHT! "Sleep" is the sexiest word I know right now! I can't wait!

I really want to say "thank you" to all of the incredible people who dropped everything to take care of me and the kids. I can't think of words to express how very grateful I am to each of you for EVERYTHING you did yesterday. THANK YOU, THANK YOU, THANK YOU!

Well, "Daddy comes home today!!" and we are all ecstatic! We have plans to pick him up this afternoon, take a family nap, go out for dinner and then go to a local fireworks show (maybe).

Lastly, since this is titled "Alexander's Blog", I want everyone to know that he is doing pretty well. He has started walking,with his transformer, without any "back up" from me or Steve. Today, he even got up onto the couch all by himself. His favorite thing now is answering the phone, so give him a call! He loves to talk on the phone! He has had some weird "pains" throughout his digestive track, head, neck, and face but the docs say it is just the steroids or the bumps causing them. Alex also had his first speech therapy appointment yesterday and was most impressive with the therapist and the department director who came in to do the assessment. He really just loves meeting new people and doing new things!

Okay, that's about it. Steve travels again next week and I have no idea how to cope with that but have decided to take my own advice and just do it "one day at a time". Lord help me, give me strength!

God bless!
G

Monday August 13th - Hitting Home

Hi all. So where to begin. Last week was quite painful for Alex due to constipation and other ills. On Friday, I took him to the hospital for abdomen xrays. The docs think that perhaps a nerve issue is causing the problem. Fortunately, things started moving over the weekend. But the week took its toll on me. After the hospital, I sat in the car and screamed until bile made my throat hurt. Then Steve and I went out for beers (thanks to Kathy!!!) and were able to drown our sorrows and talk some frustrations out. That is until Sunday, when it was Steve's turn.

After a long night, Alex had his dad carry him to the couch. Then he asked Steve to cover his feet with the blanket that was on him. Then he asked Steve to hand him the remote which was on his legs. Steve immediately took me outside and expressed his frustration. He was able to identify the problem as this: when we were going through treatments there was a plan; a beginning and an end to look forward to. Now there is just waiting-INTERMINABLE waiting!!!! He said that the couch incident really brought it home and asked me if I felt the same way. To which I just laughed and reminded him that I am HOME and yes, I feel the same way. I also reminded Steve that Alex has been betrayed by his body and believes that he really can't do ANYTHING. As an example, last week after two days of trying to have a BM, Alex was on the toilet again and we asked him to really push. He cried out "I CAN'T, I CAN'T DO ANYTHING!!!!" OMG, what a glimpse into how he feels about his body huh? Anyway, my point to Steve was this-that since he has been betrayed by his body; he has forgotten what he can do and it is our job not to "cater" to that feeling but rather to teach him what he can do, no matter how small a task it may be-like getting the remote. Steve and I agreed and decided to just keep reminding ourselves of the situation and try to stay calm.

Unfortunately, that is not as easy as it sounds. Steve is traveling again and just to make life a bit more complicated, we got the kids a full size bed to share in the nursery. Zoe had been out of sorts and missing her brother so she started coming to our bed last week as well. Turns out by Thursday night she has a fever of 102.7 degrees! Anyway, something had to give and in the best interest of mom and dad (and therefore the children) the big bed is no longer for little bodies! Last night was hell. I don't think Alex slept more than 2 hours and was crying, begging to come sleep with us. At one point, he was on the floor, throwing his toys into the hall and said "I hate you Mom!" So far tonight has gone much better and my fingers are crossed!!

Just to add fuel to the fire, Steve, Alex and I toured a local special needs preschool. Most everyone we spoke to that knew of the school had positive things to say about it but Steve and I did not "feel the love". Now we are completely torn about what to do for the upcoming school year. Do we get an advocate for Alex and keep him in his last school? Do we send him to this special needs school? Do we keep him home? AUGHHHHH!!! I asked him tonight which school would he like to go to this fall and he said "the one Zoe goes to." Which is a wonderful choice if only we could afford it. Our savings is being depleted and we just maxxed out our FSA monies for the year, which means we have to pay "out of pocket" for all remaining copays, meds, etc for the year!!! And our dog has found 3 new holes in our fence and is running through the neighborhood!!

Okay, well I'm stressed now but at least you can share my pain. I'm exhausted AGAIN and just want to sleep for days!

God bless!
G

Monday August 6th-Wonderful Weekend!!

Good Morning All! Alex's eye exam went well even though his vision has deteriorated since last October. That may sound strange but the doc assured us that nothing new is causing these symptoms. He wants to see Alex in 30 days to track this situation though. I was so relieved to hear that his optic nerve was fine! I immediately felt my shoulders relax.

STeve made it home early Saturday morning and somehow made it to the Pancake Breakfast with a smile on his face. The event was a great success! It was so great to see everyone- new and old friends! Everyone had a great time and Alex went to the face painter's tent three times! Until last night Alex still had spider makeup on his face!! I want to thank Sara and her team for doing such a great job! It really was fun!!

So a new week starts this week. Alex is having headaches; loss of appetite (He told us Friday "Mom I think I have two appetites left!"); drool; and some dizziness but not too much. So overall-in the grand scheme of things-knowing it can ALWAYS be worse- Alex is doing pretty well coming off the steroids. Today we begin the wean from the cortisone. Fingers crossed!

In case you were wondering my comma key is broken so my punctuation is off in this post!! It is driving me mad!!

Oh well how grand it is to be mad a keyboard today! Have a great day! God Bless!
G

Wednesday, August 1st-Hump Day

Better day after bad night. Alex was completely restless due to several factors, constipation being the most prevalent issue. I think it had something to do with sitting in a hospital bed all day yesterday. Seriously, we were at the hospital from 9:30a to 5:30p! The day started with a consult/eval by the rehab supervisor to review Alex's needs to resolve his choking, drool, swallow and sleep issues. She wants to do another swallow study and a sleep study. Dr. F only thinks the swallow study is necessary and that the sleep issues (apnea, which he does not have, and I told them this several times) will resolve itself with the weight loss and a longer duration of time from radiation.

Today, Alex and I were at the hospital at 9a for OT. His therapist introduced him to a new tool that has several stubby sides and different vibration settings. She used it to get Alex to move his tongue around and feel different parts of his mouth. Alex's drool is quite significant and even though he was tired and miserable, he did the exercises when I told them they would help him with his choke and his drool. What a wonderful kid huh?

Then we went to the clinic. They were very busy and Alex was so dizzy that he asked to lay down on the exam table. The doc came in and said that we are to accept the dizziness, the choking, the double vision but not any new symptoms such as unconsciousness, vomiting, and/or increased weakness on right side. Isn't that just what you want your doc to say to you, about your kid?

Luckily, they sent us home and we picked ZG up early from school to come home and have a long, long nap. Then we had a play date with Ms. Katharine, Master Nicholas and their mom, Jo-Nell. Alex was so excited about having friends over! I'm glad I did not flake out and just blob out on the couch, like I felt like doing. Instead I got up from nap, cleaned the house quickly (the only way to do it) and ordered Thai food! We had a great visit and everyone seemed to enjoy themselves. Katharine and Alex have been friends since he was 4 months old. She had a lot of very good questions and Alex even tried to walk by himself while she was here. He ended up holding one of my hands, but he did it!! I wanted to do a happy dance and cry but I kept it in!

Okay, well tomorrow is a well timed eye exam by one of the best pediatric eye docs around town. He knows Alex and has examined him since June 2006 (even before we knew about the bump). I am anxious to hear what he has to say. Alex's eyes sometimes get jerky/fluttery when he tries to track something. This would make me dizzy too! I know eye movements are controlled by the brain stem but Dr. F does not know why he would be having blurry vision. So that is where my anxiety lies. What if there is something on his optic nerve? What if it is T3? How dear God would I handle that news? We are so close to our breaking point now!!

On that note, I just want to say that even though I post blogs like Monday's. Somehow when push comes to shove, I am up and ready for the day when I am called upon. I think it is due to my absolute will to beat this; or my resolve to continue to support Alex in everything we have to go through. No matter how bad I feel, I just imagine (or try to imagine) what it is like for a 4 year old child to deal with every day. I also know that every positive thought sent our way helps my molecules gain energy and get my butt out of bed!

So thank you! God bless you!

G

Tuesday, July 31st-Missing Mike.

Okay, so yesterday was REALLY hard. I have so much anxiety about this week. Alex choked on his pasta last night and quit eating. This morning he is dizzy and now lying down before we head to the hospital. The doc did not keep him all day yesterday because typically his symptoms don't show up for a few days after he stops the steroids (Sunday). So we will be spending the day there today and perhaps tomorrow.

Today is Steve's Dad's birthday. This is the first time in 4 years that we have not been together on this day. We miss Mike very much and are sad to be without him today (and everyday).

Alex and ZG are already missing Dad (on a biz trip). And I must say I am too!! I need prayers and strength to make it.

Thanks in advance!
G

Monday, July 30th-Hard Weekend

Good Morning, though I don't feel that way. Alex had some vision issues over the weekend, dizziness, blurriness, double and was put back on a small dose of decadron. AUGHHH! And he has to spend the day at the clinic under observation. AUGHHH! Needless to say STeve and I are just beat down at this point. So exhausted, beyond physical.

Okay, pray please.

GB, G

Friday, July 27th - Update and Benefit Info

Happy Bday Janey!!

So Alex is one day off the dexamethasone. So far he is doing okay. His drool is bad and I had his dad introduce the "man's handkerchief" to him this morning. I think he likes the concept since he has held onto it so far. Our main concern now is getting his weight down. He's over 53 pounds and feels terrible. The steroids have weakened his muscles in addition, so walking is very difficult at this time.

Alex is looking forward to the Pancake Breakfast because he LOVES pancakes!! Also, because it is a party and he LOVES parties! I hope we get to see as many of you as possible there! If you want information on the event, please call Sara at 303.517.5211 and she will give you all of the details.

Okay, well that's the short and sweet of it. Have a wonderful weekend!

God bless!
G

Wednesday, July 25th - No MRI

Hi, well I spoke to Dr. F today, just by chance since I was calling his nurse to find out the time of Monday's MRI. He had not heard about Alex's weekend so I gave him the update and told him we did not want another MRI but if he said it would be necessary we'd go ahead. He said that it was NOT necessary and that he would cancel it!!! YEAH, HOORAY, YEAH, HOORAY!!!

So that is great news around here. Alex was having alot of anxiety about the MRI. Unfortunately, I can't say that life is easy right now. Alex told me yesterday that he was mad that his drool was back. In addition, he has had some horrible choking episodes this week and we are all on alert whenever he eats. Today he was napping in the car and woke up choking. I thought I was going to have to stop the car to help him. We had to tell Alex to make lots of noise by banging on the dining table if he chokes and we are not right there. AUGHHHH!!! What a F'd up conversation to have with your kid!

So today we made it to Alex's play therapy appointment. She brought out a long piece of paper divided into three sections and asked if Mom could help with this project. Alex agreed then she told us we were going to list (write or draw) what life was like "before the bump", "with the bump" and "after the bump". I almost started crying right there. Alex absolutely would not discuss life before the bump. I think it was just too painful to remember how it "used to be". He finally started participating when we added "pasta and pancakes" to the current column.

Here are some of the list items:

Before:
Playground (with friends)
School
Baby Zoe
Yin Yang (dog that went to the farm)
Mom at work more
Dad at home then work (started new job)
Running and playing (with friends)
Local amusement park
Smiles (on Alex's face) =-)
Real baths
Bike
Baseball (Alex was a great batter)

Fighting the bump:
Puzzles
Not so many smiles =-/
PAIN
Hospital
Pills
Pasta and Pancakes
Coloring
Roxie
Two Year Old Zoe (picture shows Z taking puzzle pieces off table and onto floor!)
Mom home
Broviac Line
Transformer (walker)
Super Boot

After the bump:
Playground with friends
Running
Playing
Camping in mountains with the sun, moon and rivers
No Pills
No hospital
No PAIN
No Transformer
Outside more
Travel (to see cousins)
Baseball
Bike
Lots of smiles =-)
Walking and playing with Zoe
Riding the airplane ride at the amusement park

By the end of the session he was actually excited about taking the poster home and adding more things to the "after" column. It is now hanging in the hall.

Okay, well we will see Dr. F. tomorrow. Pray that all goes well. I have to say that Alex is not asking for as much pain meds since the last visit. Also pray that his symptoms go away and that he actually starts getting better like they promised!!!

We really need a break here.

God bless!
G

Monday, July 23rd-What a Weekend!

Good Morning. Wow, am I glad that is over! Let's start from the beginning. I got into a real FUNK Thursday afternoon. I think it was a premonition of things to come. Friday I went to work and spent a good portion of the day fighting with Steve. That just means loud voices (which I hate) and harsh words. Again, probably just because we had the time to finally fight about some things and to prepare ourselves for Saturday. Friday night we made amends and went to a concert at the local botanic gardens. It was a lovely evening but one of overindulgence and I paid that price as well.

So Saturday comes and we decide to do a pay-for-view of "The Last Mimzy" (good movie, not for four year olds) because Alex has a horrible headache that is not going away with the new Rx. Then Alex decides he wants to color while I make lunch. After just a few minutes, Alex is frustrated and shoves his coloring page away. I ask him "what is wrong". He replies, "My eyes are dizzy; I have double vision." Can you say OH SHIT? So off we go to the ER.

Double vision is a brand new neurological symptom and not something we want right now. Long story, longer. Alex has a CT (came back stable), they want an MRI but can't get a radiologist. Seems an MRI is a very political event and our doctor (who has the pull) is out of the country right now. So Alex may have one today or tomorrow. Alex has not reported more double vision since we came home, but I'm not so sure he would at this time anyway. His headaches continue though.

Our prayer now is that the double vision is caused by the headaches. We want to talk to Dr. F (returns tomorrow) before we do an MRI (just don't really know it is necessary) so I really don't know what this week holds in store for us.

In other news, Zoe had a wonderful weekend with her best friend and her folks. They took ZG at a moment's notice on Saturday and also Sunday afternoon. We had planned a family concert event but it was too hot for Alex to be outside so they took ZG to the event. I have to say I missed her though.

Okay, well that is all I really want to say at this time. Prayers welcome and appreciated!

God bless.
G

Thursday, July 19th

Hi Everyone. Well, Alex is doing okay. He has lost .2 kilograms and is handling his steroid decrease well. He is still having lots of pain and has started a new med used for nerve irritation pain. They use this drug to treat "phantom pain" in amputee victims. Alex has also had to start a cortisone drug because his body's ability to produce cortisone has been diminished by all of the steroids and he could go into shock without it. This will slow down his weight loss and either new drug can cause some BAD moods. Poor kid!

Besides that we are trying to get a play area built for Alex and Zoe in the back yard. We are frustrated with the process of working and paying for a landscape architect that has promised the moon to be delivered yesterday but so far we are at a standstill. Steve and I have come up with our own design and hopefully, things will get moving quickly! Alex just wants to play like and with kids and that is our priority at this time.

Unfortunately, the country club event had to be cancelled. There is talk or reviving it at a later date so stay tuned for that update. We'll just have to wait and see. The women planning the event are heart broken but reality is reality and the guests just were not there. I'm okay with all of this though and hope everyone can make it to the Pancake Breakfast on August 4th! It will be a great time.

Alex is spending his days coloring, cooking, and going to appointments. He loves play dates so if anyone wants to have one let me know!! Zoe Grace is growing taller everyday and still has that two-ness about her. She would love to play with Alex but he just can't stand for her to even touch him. It is a sad situation, but we try to come up with activities they both can enjoy. (read as: I can't wait for that play area!!!)

So far Steve and I are doing well on Slim 4 Life. I have lost 17.5 pounds and Steve is down 25 lbs! We lost almost two Zoes!!! The road is still a long one but we are getting used to the plan and the supplements are GREAT!!! (read as: we are wired all of the time!!) I definitely have more energy!

Okay, well I think that is it. One day at a time.

God bless.
G

Wednesday, July 11th-Update

Hi. Oh geez, where to begin? Well let's just get caught up. Since last Wednesday, we have been to the clinic three times. twice for exams and yesterday because Alex was having a horrible headache that would not respond to OTC meds. They gave him some morphine and he felt much better. Seems that he just hit a wall as he was coming off the steroids. Either that or in my exhaustion, I mixed up his meds and gave him two Robinol instead of one Robinal and one mg of steroid. Alex has had some hard times lately. He has become very clingy at night and holds either mine or Steve's arm very tightly all through the night. He is so afraid of choking and the bad dreams. It is heart wrenching and makes sleep light at best.

Also, Alex has given us some clues into how he is doing mentally. The morning after the fireworks show, Alex told Steve that he was sad when he was there. Steve asked him why and he replied, "Cuz I just wanted to run and play (like the other kids)". Then we have noticed how much he does not want to go into the school to pick up or drop off Zoe. One day as his former classmates passed him, bouncing along, each one looked at Alex with awe and wonder, but none said "Hello". I know why he hates going in to the school. It is hard on Steve and I as well to see Alex's friends a year older, walking, talking and being normal. Just like we pray for Alex. It really shows you what you have lost. But I force myself to focus on what I have and just smile and get in and out asap. I don't think ill of the children at all! I really want everyone to understand that; I know these kids are great kids and they are behaving in a completely normal way to a very strange situation for them. It's strange for all of us!

Steve and I were talking last Monday night, when Alex was hospitalized and prior to the MRI, we were evaluating the situation and "checking in" as we call it. STeve said that he prays every night that Alex's suffering be put on him. I was aghast! NO!! Then we debated whether the Universe works that way. Is it an eye for an eye or can miracles happen? I was on the side of miracles. Especially since we have so many of you helping us along this journey!

Okay, let's end this on a good note. At the spur of the moment on Friday, Zoe and I headed to Aspen for a girls' weekend with her best friend and her best friend's mother. We stayed at an apartment owned by their Aunt and Uncle. It was a lovely trip and I have not seen Zoe so happy in a very long while. I hope to post her pic soon. The moms bonded while the girls played and fought and played some more. We came home Sunday, but the trip home was a long one and I needed a weekend from my weekend.

Another positive event was that Steve's friend, Rick is in town and took the family out to dinner last night. Alex was so excited to see Rick again (he loves company!!!) and was in rare form all evening. He wants to know everything about our days, plans, appointments, baby sitters, etc. He has asked me several times "who is going to watch us when you get your haircut?" I assume he needs to feel in control of something in his life. Everytime I pick up a phone, he asks "who are you calling?" I have to tell him who and why. This has yet to get exhausting but I bet it will soon!!

Okay, that is it. Alex is still on a high dose of steroids and at his highest weight ever, due to it. He has alot of trouble getting around, due to the leg / bone pain and extra weight as well. We go back tomorrow morning for another exam. Fingers crossed, but I can tell this is going to be a long, slow process.

God bless!
G

Thursday, July 5th - He's Home!!! (and Phone # for Benefit)

Good Morning and Happy Bday Tracie!! Alex came home yesterday afternoon. YEAHHH! We see the doc tomorrow morning. Steve and I feel much lighter these days and it has nothing to do with the scale!! It really seems easier to breathe, sleep, be! We feel like we finally got a break!

I want each of you to know that your positive thoughts and prayers have made all the difference. I love reading the comments and getting a glimpse of others thoughts during this trial. Please don't stop now! Miracles still needed here!! But we are one miracle closer now!!

I also wanted to let you know that since I do not have everyone's email, if you would like to attend a fundraiser event, please call 303.709.7998 and leave a message. Someone will return your call promptly. As I mentioned earlier, there are two fundraisers coming up. The first is an adults only evening at the Lakewood Country Club on July 27th at 6p. This will be an evening of dinner and dancing and lots of fun! Next, on August 4th at 9a, there will be a Pancake Breakfast Fundraiser/Auction with all kinds of family oriented fun activities! It would be great to meet everyone at either of these events and to see old friends we have not seen in a long time too!! So please consider coming and call for information. Alot of lovely people are working very hard for dear Alex and we are so grateful to each of them.

Okay, well I hope everyone has a wonderful summer day! God Bless and Thank you!!

G

Tuesday July3rd "Oh Happy Day!!!

Great news!!! It is just temporary swelling! No holes in brainstem, no tumor growth, just normal swelling due to dying tumor cells!!!

OH WHAT A FEELING!!! JOY JOY JOY!!!

Thank you all for your prayers!! Alex is still at the hospital and has had his first dose of decreased steroids (still an adult dose though). The doc wants to see what happens tonight. He may be sent home tomorrow. He may get a hospital bed to sleep in or a cpap (keeps air ways open while sleeping). Just don' t know right now.

Steve is with Alex now. I came home to see Ms. ZG. I miss her so and have not seen her since yesterday morning.

Oh, what a wonderful feeling. FINALLY, GOOD NEWS, A BREAK, A LIGHT AT THE END OF THE TUNNEL!!!

I'm going to go chill now and enjoy this moment!

God bless you all!!!
G

Monday, July 2nd, 12:11pm

The doc says Alex's symptoms are classic of brainstem neucrosis (sp?) (aka: dying due to radiation). Since the brainstem controls breathing and heart rate, he wants to monitor Alex over the next 24-48 hours. So Steve and Alex are at the hospital now waiting for the room to be prepared. Doc says Alex "looks good" (better than he expected) and is not that worried. He says the time to worry is if we are still dealing with this at 6-9 months. I think he backed off on his "alert level" because he could see how upset I was.

Alex will be in Room 550 at Children's. Feel free to call or come by later. If someone could bring a rocket ship that lights up and makes noises, Alex would be most appreciative. He saw one last night at a fireworks show and really, really wants one now. I'll pay you back!

I have been ordered to sleep. So I am going to rest now. Thank you all for your prayers. Keep them coming!!

God bless!
G

Monday, July 2nd 12:22am

We just had to give Alex 8mg of steroids (the highest dose yet). His symptoms are not due to the ventricle swelling so a shunt will not help. They are due to the swelling of the tumors. We hope he will be able to rest tonight. We see Dr. Foreman at 10am.

Pray. Pray loud, pray long, pray often, pray hard, pray soft, just pray for Alex, my sweet, beautiful, wonderful, dear little boy and keeper of my heart.

This is too hard.

G

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