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