Wednesday, Sept. 19th -The MEETING

Alex will hopefully come home today, but before he does, Steve and I have to sit through an hour and half long "terminal care" meeting at noon. Hospice and the Butterfly Program (no idea what that is) will be arranged and set up and we will have to sign a Colorado DNR in order for Alex to get a powerful drug to help him with his symptoms.

Still running on fumes. One favor to ask. PLEASE don't ask us "how are you" just say "hello". Zoe is very excited to have the family together again. We all are.

Wish us peace and pray for Alex and ZG!

G

Tuesday, Sept. 18th - Dark Days

So within the next 24 hours Steve and I have to make some very difficult decisions. Dr. F says Alex is in the six week window before his tumors take over and he can no longer breathe. Steve and I have three routes to choose from: terminal care (preventing and/or easing symptoms without surgery); surgeries i.e. gastronomy, tracheotomy, and resection (all could kill Alex and/or leave him on a ventilator) or experimental therapy. In a few minutes we meet with the experimental team, then neurosurgery then Dr. F again.

Right now, surgery is off my list. I really don't have any clue how I am standing right now. I just know that I'll be damned if I'm going to let Alex's days be filled with sadness and tears. He is doing very well actually and it is such a tease to have to hear the doctors talk then see his beautiful smile.

Keep praying please, miracles can happen.

God Bless,
G

Saturday, Sept. 15th- Scariest Moment of Life

Alex seemed to be doing okay last night. He was telling everyone what he was going to eat today: noodles, raisins, edamame, waffles and Spider milk. He ended up in our bed with his portable DVD watching Winnie the Pooh with me and ZG and then Evan and Stephanie. The nurse came by at six and went over the IV drugs with me and we gave him everything at 8p. At 10:49pm, after Alex's 2nd dose of morphine last night he stopped breathing and was unresponsive and blue. 911 was called and they were able to get him breathing again. I can't explain how absolutely horrifying it was to see Alex with his eyes rolled back and blue.

Turns out the morphine (injected into his heart) was too high a dose (paramedic said it was a tricky drug to manage) and he has pneumonia. He also probably aspirated while unconscious. I rode in the ambulance and Steve followed in the car. At 3a, he was put into a hospital room and I was given a cab voucher to go home. Up to that point I had had 4 hours sleep in 48 or more hours. I got 6 hours sleep and feel much more human.

So, back to the hospital we go. Alex was upset with me last night in the ER and was yelling at me to stop asking him if he needed suctioning. I have never been so happy to be yelled at in my life!

God bless,
G

Friday, Sept 4th- Alex is home!!!

It's 1:43 and Alex is home!!! We are all exhausted so that is the post for now.

GB,
G

Friday, Sept. 14th- Anger = POWER!!!

Good Morning. Since the last post, I was able to vent to my sis and Steve and I decided to make an "Alex, Read Me" data sheet with all of his pertinent info on it. Then I went immediately to Oncology and asked that Alex's meds be reviewed and that they figure out some way for him to take any necessary meds through his Broviac line. Dr. F's nurse said "Okay, we'll just request that". To which I said, "but we asked Foreman about that a week ago and he said "no"." "Oh, well, we'll convince him." Then Dr. F walked by and Jennie asked if it was okay to go to all IV meds and he said "sure!" Then I asked that a suction machine be sent home with us and she said she could make that happen too.

I'll write more later, but this is taking forever because my machine needs a reboot. Alex did okay this afternoon (had some friends in) but once night came, it started again. He was able to get some rest, but not much. Steve is with him now. I will be at the airport at 6:30 AM to fetch my sis and her family and so I need to rest.

TTFN,
G

Thursday, September 13th - Happy F'g New Year

So the surgery went fine. The doc said that generally the greater the pressure of the fluid when it is released (he's seen it squirt out over his shoulder) the greater the relief the patient feels afterwards. Alex did not have much pressure. AUGHHHH!!!

Last night was absolute misery. Alex choked on his own secretions most of the night and had to be suctioned (like at the dentist's office) to be relieved. Neither of us slept much at all. He did not consume one bite of food yesterday and getting him to drink was a real battle. The reason is most likely that the breathing tube used during surgery has caused some inflammation and irritation and it just hurts him to swallow. He does not complain about his throat hurting though. He complains about his stomach hurting because of all of the choking. He is so afraid of choking this morning that when I left the room at 9am he could not bring himself to eat a bite of pancake nor drink. I became so frustrated (and tired) that I had to leave him with Nonni to handle the situation.

Today is the Jewish New Year and Dr. H said I could make the call whether or not we went home today. He said "if you are comfortable, then get out of here." Unfortunately, I am not comfortable and I don't want to take Alex home and watch him suffocate on his own saliva.

I am completely and utterly done at this point. I just want someone to HELP this little boy! I'm sick of hearing "I'm so sorry, blah blah blah." I want the docs to stop practicing on him and just make him feel better! Why is that so frickin' hard? I want to yell at them that they are inadequate and stupid and for God's sake please stop asking me the same damn questions over and over again. If someone asks me again, "is the choking new?" I think I will scream. Can't they see that he had a swallow study over a year ago for this? Can't they take the time to find out anything about their patient. Why with every shift change do I have to tell the new nurse not to talk to Alex's right ear, to address him directly in front of him? Can't someone make this known to all caregivers? I'm so FRUSTRATED!!!!!

So you may ask, "what's next?" Well, if Alex's symptoms aren't improved by next week and his ventricles are back to regular size then we will have to consider brain surgery to remove the tumors. Whoo Hoo! Can't wait!!

Okay, I apologize for the rant but I'm getting mad! I don't see any sleep in my future and my sister and her family arrive tomorrow for the vacation that is not to happen. Alex may be in the hospital for the majority of their trip and I'm pissed about all of this. This is so unjust!

I don't think I want Alex to have any friends come to visit today. I may change my mind later, but right now, I want him to rest and realize that doing everything possible to get out of here (rest, eat, drink without choking) is the best thing. He has said before that he wanted to spend the night in the hospital so he could see his friends. That gave me a reason to pause and reconsider the situation.

So if you were wanting to come by, please call first. Maybe I'll sweeten up in a few hours. Otherwise, it would be in everyone's best interest to just stay away (from me!!).

Bye,
g

Wednesday, Sept. 12th

Had a pleasant evening with many friends. At bedtime, Alex had a panic attack or something that caused him to choke and spit up while just sitting. Dr. F said take him in so we went to the ER with our neighbor Ben. By the time Alex arrived he was feeling better but still struggling with his swallow. I asked him several times if he really wanted to go inside and he always said "yes". Long story short, two hours later we were sent home after Alex took half of a Tylenol 3 tab. He is still sleeping as is ZG.

I want to thank everyone for coming by last night. It is so great to have support around you. I also want to apologize for the breakdown. I realized that I had not taken my AM Rx and after Alex's play therapist called and said she would come by this morning to see Alex, I just lost it. It hit me how very special Alex is to so many people and how absolutely unjust this is for us and so many people that love us.

The sinkhole is growing and I feel its gravitational pull more and more. I also hold onto my hope and know that now is not the time to sink. That will come. I just pray that I can get out at some point afterwards.

So today the neurosurgeon will put a hole in the floor of Alex's third brain ventricle. This will hopefully allow fluid to flow more freely and relieve the hydrocephalus and pressure on Alex's lower brain which we pray is what is causing these new, more severe symptoms. If this does not work then an internal shunt from the brain to his stomach will be put in and if that does not work we will have to discuss resection (removal of the tumor). Dr. Handler says that with the new "data points" we are in a whole new ball game and these types of tumors can actually be removed from the brainstem (leaving a hole) and the child do just fine. It is possible he said believe it or not. So there it is.

Gotta get this day going. Love to you all. Send us strength, peace, healing and energy to avoid error. Call me on my mobile if you want to see Alex at the hospital.

GB,
G

Tuesday, Sept. 11th - Surgery Date

Steve arrived at his destination. Alex will have surgery tomorrow at 1p and will be in the hospital tomorrow night (at least). Going to nap now with my beautiful boy.

GB,
G

Monday, Sept. 10th - What a day!

So today was a trial. Alex had a lot of pain around his right kidney yesterday afternoon and this morning (no fever) so we took him to see the doc. We also had to mention his choking, arm pain, hand tremors and increased dizziness. All the doc really wanted to do was proceed with the internal shunt. So we did an ultrasound and all renal functions/organs look fine and were sent home. At home Alex had a very difficult time taking his pain meds and then gagged on his milk. He has lost another kilogram this week (down to 21.6) and it seemed to me that he was having to "tuck and turn" to breathe (something only previously needed to swallow.)

I became very frightened and called the doc. He wants to move up the surgery to this week. Then depending on outcome have a serious "hard discussion about gastric tubes and tracheotomy". So Steve and I spoke to Alex. He listened hard, asked good questions and then replied that he wanted the surgery now. Then when we reminded him that his dad would not be able to be there; he became more fearful. So we all decided to re-examine the circumstances tomorrow morning. Alex did well taking his evening meds and pain liquid, so hopefully he will sleep well and be alright in the morning.

Steve heads out on his biz trip tomorrow. I hate that he is flying on 9-11 but really don't have the strength to really put much energy into my worry. I just know I can't wait until he gets home and is in my arms again.

Tonight, I was talking to a dear friend and these words came out. "This thing is dark. It is evil. It takes energy, breath, hope. It feeds on our fears and worries. It grows for no other reason than to spite our dreams and beliefs. I hate it." (That is a paraphrase, but you get the gist.)

Okay, well tomorrow will hopefully start with both kids back at school and Steve arriving safely. Then all bets are off. Wish us luck!

God bless. Make this second count, the next is not a sure thing!
G

Sunday, Sept. 9th - The Battles

Hi. So Alex is doing pretty well. Steve realized last night that when he pinches his nostrils and blows, he is trying to relieve the pressure inside his head and not his ears. His choke is actually okay, but he is so frightened about it, that his fear causes a lot of problems during meals and pill time. He has said, in just the past two days, that his left hand feels weird and today is was visibly shaking. I told him it is because his body is hungry. That got three bites of waffles in him. Small victory. Basically he is not eating much these days. That is one of the battles. The other is the pill taking. Just dreadful, really. His dizzy eyes (brainstem controls eye movement and his eyes sometimes become visibly jittery) have caused him to say, "Mom, I don't think I'm a coloring boy anymore." So the Color Wonders no longer hold any appeal for him these days. He loves to be around people, wakes with a smile and enjoys playing his Nintendo DS game. Even the doc said that Alex's demeanor and body don't match the last scan. Another battle.

So we don't get to go on our mountain vacation. Fortunately, the condo owner graciously offered to rebook or refund our money. I'm praying to rebook. Alex will have a surgical consult next Tuesday to discuss the least invasive option, ventriclostomy (putting a hole in the bottom of the 3rd ventricle via probe). The pediatric neurosurgeon that did the brain biopsy last year will be performing this procedure as well. I think they are trying to book the surgery for the 17th. No final word yet on that though. Steve and I decided to postpone the surgery so Alex can enjoy his cousin's visit this Friday. The neurosurgeon said it was okay to wait one week or so.

We have not spoken to Alex about any recent developments. He has yet to realize that this is the day we should be heading to the mountains. Steve has taken tomorrow off and we have plans to go to the Zoo. We plan to tell him tomorrow that our trip has been postponed; Evan is still coming Friday; Dad is leaving Tuesday and will be gone for a few days; and that he will be seeing Dr. Handler on Tuesday to help him with his nose pressure. That is so much for a four year old, huh? We have learned to time the information given to Alex very carefully. On Friday night he was awake most of the night because "his mind was full of thoughts". I wanted to know what those thoughts were, but in order to get him to sleep, Steve and I just took turns sleeping in the bed with him and ZG.

Speaking of ZG, she (and all of us) are loving having Nonni around as well as her dog, Toby. Zoe is constantly saying "Toby, Toby, Toby" and ordering him around. Roxie loves having someone around to play with as well. Our friends have found a home for Roxie with lots of space and two boys to play with her. Steve and I don't want to give her up but know she is more than we can handle at this time. To add to the equation, she is really Zoe's dog and we think Zoe will not do well with Roxie Rue gone especially if.

So I have to say it is interesting to see how different persons respond to this situation. I (more than anyone) know there is no right nor wrong response, but there are interesting ones. Some acquaintances step up and take it upon themselves to make life easier by offering comfort, food, beer, wine, company etc. While some dear friends are virtually nonexistent. I don't blame anyone for not wanting to be a part of this but I do honor those that make the choice to participate with us.

On Friday, I took Zoe to school. On the way, my mind started up and by the time I reached the school I was near breakdown. I had to tell ZG's teacher that we would not be going on our vacation and she asked "how is Alex?" Which was probably the most difficult question to answer and immediately started me crying. Then the sobs came and I could not get out of that school fast enough. I'm sure the parents that do not know our situation are wondering what is wrong with that mom that is always crying! I really don't care though. It's just that you don't want to break down in such a public place. So I came home and told Steve and Linda that I was not to be left alone with my thoughts again! Steve went out to run an errand later that day, and upon his return said, "I know what you mean about being alone with your thoughts, now." Another battle.

So for the past two days, I have just kept moving. I absolutely drove my friend and Linda crazy last night while they were relaxing on the patio by my constant motion, but until I can just drop from exhaustion, sleep is not wanted nor easily come by. Another battle.

The worst battles by far though are the ones raging in my mind. Do I believe the prognosis and brace myself for the worst or have faith (in a God I am so ANGRY with right now) that Alex and our prayers will dissolve these things growing in his brain? Do I succumb to the downward forces that are pulling me into depression and despair or not waste a single second of this precious time with the most precious, smartest, sweetest and spiritual little boy I have ever known? How do I reconcile that God is trying to take away my greatest achievement, my love, my heart, my soul? How do I figure out what cosmic energy I have screwed up and make amends? Whose fricking fault is this? How do I make this stop? Why would the Universe take Zoe's big brother away from her, WHY? Why is it that when I am told that God only gives you what you can take; I only hear,"you deserve this"? There are no breaks for you. You had a shitty childhood that you would not wish upon your worst enemy and now you are going to be punished further as a mother? What the F#@K!!!???!! How is this "my friggin destiny"? If so, what can I do to make it right? I'll do anything!!!!

Since Thursday, I just struggle with this surving this very second and hope to get through the next second. That is the best I can do. Steve and I went to Home Depot to get things for the play area. That was very enjoyable. Steve has immersed himself in this project. I just hope he leaves some work for all of our friends to do at the end of the month. I have sent out an evite asking anyone who wants to, to come and help us finish this project. So far the responses have been quite positive. I can't wait to see this play area when it is done. It will have a play house, sensory area, stepping stone path (made by friends), swing arbor with interchangeable swing components, stage, sand pit and water feature. All connected by a cinder track so Alex can use his transformer (or wheelchair) to move around. It will be the play area of any kid's dreams!

I have had several people ask "how can I help?" I know many of you feel as powerless as we do in this situation. But there are some things that would help. Visiting Alex (play dates) are always welcome. Keeping Steve and I engaged is another way to help. I would like to see Steve out with some buds doing "guy things" more. I could use someone to help me get to yoga or pilates or something. Funds can always be used for the play area. Since we are a single income family now, I am completely stressed about funds. Alex would love to get some more Nintendo DS games too (rated "E" for everyone, please). Prayers are always appropriate as well. I just ask that if cards or notes are sent they not say "get well" but rather just let Alex know how great he is and positive stuff like that.

Well, that is it. I am going to go outside and work on the water feature. Wish us well with our battles.

God bless.
G

Play Pavers and Prayers Party

If you are interested in receiving details on the upcoming play area completion project (at our house) please email Alex and Zoe at fightthebump@comcast.net and they will send you the evite.

Thursday, Sept 6th- Worse News Possible

So both tumors are increasing and his ventricles are dilated. Bad news on all fronts. Reason to curse the heavens! This leads the doctor to place Alex in "terminal care". Steve does NOT want to talk about it so PLEASE don't even bring it up. I'm trying desperately to hold onto hope. Our vacation may have to be canceled because altitude can aggravate the ventricle situation and cause severe consequences. That news is to be determined later today/tomorrow. Doc is consulting neurosurgery regarding resection, biopsy, shunt as well as experimental neuro-oncology for any treatments due to this new situation. The fact that the "bumps" have grown post radiation (or any treatment) so quickly bodes ill for Alex in a very disturbing way. No timeline can be given at this time.

Numbness setting in. Auto-pilot on. Mascara gone.

GB,
G

Thursday, Sept. 6th-Positive Thoughts, Please.

So at 8am this morning Alex will be having his next regularly scheduled MRI. Please send him positive, healing energy. I never know whether or not to wear mascara on these days. =0\

God bless.
G

Wednesday, September 5th - Prasie the pee! and email for Alex

Hi everyone, life has been so busy lately and you'll notice this post is being done at 3AM. Linda arrives today and we are all so excited to have her here!! Alex has had a really good week plus since he left the hospital. The pee prayers really worked and we are all very happy about that! Last Friday we learned how literally Alex had taken the request to "pee once a day". It was late and he had had alot of water that day (weird, very strange) and I asked him if he needed to pee so he could get a good night's rest. He said he had already peed that day and had to wait until morning! Too cute huh? Well, we have since made ourselves more clear and are even getting more pee!

You may think (or wish) I were done with the pee stories, but I have one more! At a recent bedtime, Steve and I were talking to ZG about peeing in the potty. Alex chimed in and said "but Mommy, Zoe can't pee in the potty. She doesn't have a penis yet." Ohhhh, the inner workings of children's minds! Okay, now I am done with the pee stories!

I hope you all had a great holiday weekend. We sure did. On Friday night, Steve decided he was not quite up to going to the botanic gardens concert so I took Zoe and our friend (and bridesmaid) Heather. It was a great night even though we got rained out and the music did not start until 9 PM. Zoe was AWESOME!! She loved being out with the girls! At one point, late in the evening (read exhausted and trying to keep moving) Zoe was alternating huge hugs between Heather and me! It was great! She has always been such a cuddle bunny. Ever since, we have been very snuggly and I love it! Nothing like a little girl hug!

While we were at the concert, Steve and Alex decided to go hang on the front lawn and watch clouds. Soon many neighbors showed up and it sounds like a mini-party may have occurred. Everyone says that seeing STeve laying on his back with Alex doing the same just gazing at the clouds was heart warming and very touching. Our neighbor, Cydney brought Alex a dragon all the way from Germany. Steve (my D&D geek) got to tell Alex more about dragons and their magic. Alex wanted to know where the button was for the magic! Cydney told me later that she had a soul sharing experience with Alex that night as well. As she was leaving, she turned and said "Alex" while giving the "peace sign". She said that without a blink and in the most sincere manner, Alex just put up his hand and returned the gesture. Her accounting of this experience is quite moving and I can't do it justice here, regardless Alex has a new "soul mate" and so does Cydney!

Then Saturday, STeve announced that he was going to build the swing arbor for the play area. He dug four, five foot holes that day and had enough energy to go out with the neighbors. We had a fabulous dinner with six of our friends and it felt great! The conversation was lively and at times boisterous. The food was divine and it was great getting off the block with everyone and really making some wonderful connections. Thank you Crissy for arranging it; thank you Kathy for babysitting; and Courtney and Steve we'll just have to do it all again when you are in town!

Sunday was spent pouring cement and putting in posts after a wonderful brunch with some more friends from the school. I did backup work and picked up a dresser I found on craigslist.org! Gotta love it, fifty bucks and Linda now has a really cool dresser and mirror! Alex got a play date with his bestest friend, Esther and ZG had some racing fun with her brother Wiley! These kids are just too cute!

Monday, with help from Kelly and Brook (my friend-in-laws, so to speak), I was able to start organizing the downstairs and Steve got some cross beams on the arbor. It was great spending time with K and B who also brought their son, Zack and his friend Elise to play with the kids. Our house was full of love and laughter!

The only thing I would change about such a wonderful holiday is the fact that Alex started really having trouble with his swallow. I think he had a sore throat; but the chokes were unwelcomed and discomforting reminders of our situation. Maybe we needed that? I doubt it! Anyhoo, I took Alex to the doc, Tuesday morning, and he said that Alex seems stronger and really is "in the best shape ever"!!!! I agreed and we soon left! He said Alex's throat was a little red, but to just keep giving him pain reliever for that and all should be fine. Knock on wood.

So last Friday, was my last day with my employer. I'm not upset by this, so please don't feel bad for me. This company has been the best one I have EVER worked for and I will miss my friends and coworkers very much. The good part is that now I won't feel guilty about being so "unavailable" and am free to meet my family (and my) needs. I get to focus strictly on being a good Mom, wife, person and daughter-in-law. Who knows, when Alex is free of this, I may just return! Thank you Jerry, Judge Dana and Judge Neighbors for creating such a wonderful workplace. Hopefully, I'll be able to stop in and have lunch sometimes!

Okay, well that is all! Now perhaps I can go back to bed and rest having got this all off my chest! Keep those wonderful prayers coming! (Diane, I got your letter today, but have not had a chance to finish it. Hopefully soon!) Also, if anyone wants to send Alex an email message, picture or funny story feel free to send it to fightthebump@comcast.net ! Have a great day!

God bless!
G

Tuesday, August 28th

Are you ready for some GREAT news? Alex is at school this morning!!!!! He is back at his old Montessori school just on Tuesdays and Thursdays and just in the AM. I had been talking to the director about figuring something out for Alex, but this was all his (and Grace's) idea! After picking up ZG yesterday, he asked me "Mom, can I go to school tomorrow?" This was after spending 20 minutes or so with Ms. Grace in the car while I went in the school to get Zoe. Grace fessed up this morning that she may have planted the idea in his head by telling him how excited she was to have him back at the school. Anyway, a few phone calls later and it was a done deal! I feel like I did on that very first day of school, when Alex was only four months old. I am so happy for him. I will be going back to do "circle time" with Alex and his old classmates in a few minutes. I am sure some of the children will have some great questions to ask!

So we had a great weekend too. Friday night was spent with lots of the neighbors, laughing, drinking wine and eating pizza! I did something I have never done before! I fell asleep putting the kids to bed at 8pm. Turned out to be a good thing since Alex was up at 5am and Steven had taken a Tylenol PM at bedtime. Saturday started off with an unexpected visit from my boss and his lovely wife. That was a great surprise! Steve and Alex made a trip to the hardware store, where they went "fast" in the flat cart! Then Alex's friend, Lucas came over for a surprise visit in the evening. Sunday we had brunch with some good friends with kids the same age as A and Z; then did a spontaneous drive to the mountains. We ended up on the "highest road in America" which Alex loved and has asked to do again this coming weekend.

Most importantly, Alex has been able to pee every day since leaving the hospital and his doc said he looks great! So one may ask how we are doing with all of this. I am not ready to accept anything at this time. I am in full AVOIDANCE mode, so please don't force a conversation about prognosis on me! I won't do it! I can't even talk to my family yet. Steve had a huge Freudian slip on our drive. We were discussing the play area and decided to go ahead with our plans. I want to have everyone over to make individual, custom stepping stones for the play area. Steve was saying something about that area and out came "like a memorial". He immediately apologized, we laughed then cried then composed ourselves and enjoyed the view. That was so painful it hurt physically.

Okay, well let's go back to the best news to date; Alex is in school!!! Hooray! I want to thank Lisa, Grace and Ms. Alicia for making this happen. It is so huge!!

God bless,
G

Friday, August 24th

Alex is home without a catheter!!!!! I don't know how you did it but you did it! God Bless you! Much Love, going to really enjoy today, G!

Thursday, August 23rd-Talk w/ Foreman

So Alex finally was able to pee about 3p today. It was after 3 attempts and a failed catheterising. There seems to be a problem with his foreskin which gave us hope for a little bit but that was soon smashed and broken into many pieces. Steve and I decided yesterday that we wanted to talk to Dr. Foreman about his policy of providing information on an as needed basis. We expressed our irksomeness at Alex's lack of progress and this latest "surprising" development that the staff says they have known about for a while. Well, then why weren't we told about this bladder issue earlier?

His response to our concerns was that he would have to give us a list of possibilities that are most likely not to occur and in his experience it is better to do things this way because usually bladders heal themselves after radiation, etc.

So here is the spiel that really sets the stage for the future. Dr. Foreman says that 70% of post radiation, brainstem tumor children show improved quality of life at this point. That means 30% don't. Alex is definitely in that 30%. Regardless of the quality of life issue, 80% of patients with this type of tumor (remember, Alex's is not typical) will regress between 9 and 11 months post radiation (that's early spring 2008 for Alex). Once symptoms return they return with a vengenance and usually within six weeks the child is deceased. So the remaining 20%, (we did not go further than this point) I assume get to that 2-3 year milestone and if they survive that then prognosis is good.

Since Alex's tumor is not typical and Dr. Foreman is not God, no one knows what will happen, but those are the stats. Dr. Foreman thinks Alex's quality of life is as good as it will ever get at this point (or very near to it). He talked to us about what would improve Alex's happiness at this point. We talked about things like an electric wheelchair and going to school as long as it is enjoyable for Alex.

I am still at the hospital. I went home earlier to shower and returned for our meeting. Steve has taken a dinner break with a friend and will return shortly with Mac Grill for Alexander. At that time, ZG and I will head home and start our evening routine. Hopefully some girlfriends are expected to meet me at the house. I plan on drinking some wine and hopefully (or not) feeling this. I am in shock I think. I just want this to stop and to hear some good news.

This is so bad. How do you stay positive at this point? How do you prepare? What do you prepare for? AUGHHHH!! MAKE IT STOP, PLEASE! THIS IS NOT FAIR, DAMN IT!!!!!!!

GB, G.

Wednesday, August 22nd- Worried Oncologist

Hi all, good news first. Steve is home!!!! YEAH!! More good news, it does not seem that Alex has a kidney infection, but we won't know for sure until tomorrow. Bad news, since Alex is not improving "neurologically" his oncologist, Dr. Foreman stated today that "I am worried, not in despair, but definitely worried." Not words you really want to hear as a parent, friend, loved one of such a beautiful wonderful precious boy. Steve took the news hard but I am keeping it at bay and not really feeling it just yet.

If Alex is not able to void his bladder completely by himself tonight then tomorrow I will be taught how to catheterize him and most likely we'll start that every four hours. This is just soooo wrong. I'll do it because it keeps Alex healthy, but just for the record-this sucks!!

Okay, Tina, I called your phone and a guy answered that had found it and said he would leave it for you at the jewelry counter at Macy's. Call me when you can, Alex wants to see the kids! Alex really wants visitors so please feel free to call/come by. We are in room 540, still downtown.

Okay, gotta go. Pray for pee!

God bless!
G

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