Thursday, November 29th - Update

So we have not had any alarms during the night lately. Alex does seem to need the O2 when he is awake more than ever though. But that is okay! Yesterday Steve came to Alex's OT/PT appointment with us. Alex had a good time kicking blocks and bugs onto his Dad. We took some great video. Alex also has a yeast infection in his penis and thrush in his mouth. We started treatments yesterday and hope that his swallow will be better when the thrush is gone.

Yesterday was also spent in a pretty lousy mood. Steve and I could not stop arguing with each other. I finally left to have a beer and burger with a good friend that was over for a visit. Steve really warmed up when we returned with a burger for him too. Then we watched "How the Grinch Stole Christmas" and then bedtime.

Okay, tomorrow we hope to take Alex to the Make-A-Wish Holiday store at TCH. I hope that we can get him there and his new power chair. I know he would prefer to be able to move around by himself as he does his Christmas shopping. Wish us luck!

So the 72 hour notice has been joyfully dismissed! Alex's stats are good as are his spirits. My issue with him now is that he wakes up everyday asking for some new video, game and/or gift. I so want him to be grateful for the multitude of toys he has as well as the friends and family that surround him with love. This is such a struggle for me. I get so frustrated with him and then at myself for being short with Alex. Somehow (Nonni, friends, dad) he ends up getting what he has asked for that day. So my efforts are to no avail and it starts all over the next day. I know I need to let this go, but our wallet would appreciate the break!

I wanted to write about Zoe Grace for a bit. She is such a joyful child (except when her nap is cut short). She starts the day with "Hi Mommy, I'm awake now!" that just makes the morning bright when accompanied by her smile! She is actively potty training and is quite successful for everyone else but me (what's up with that?)! I'll take progress anyway I can get it here though! She loves playing games with Alex on the Wii (even if she uses the wrong controller). And the Teenage Mutant Ninja Turtles are still her favorite heroes. If Alex's alarms go off, she always asks "is Alex okay?" over and over until things stabilize. She is very empathetic and loving toward Alex. She is also a great two-year old, testing her boundaries and such. She keeps us busy!

Okay, I have a list of chores to do today. I really want to go get our Xmas tree today! We have friends that want to bring Santa to the house. I think this year's tree will have lots of Spider Man ornaments on it!!!

Love and many thanks for the powerful prayers. Keep it up!

G

Tuesday, November 27th - Update

Good Morning! What a beautiful, sun-filled day! Alex had his second "no-alarm" night last night. He is currently battling his cousin on the Wii Spider Man game.

I do have a request to make. Since Alex (and I) get so overwhelmed with a full house, please call before you stop by for a visit. This way we can make sure everyone has quality time with Alex.

God bless! love and hugs!
G

Monday, November 26th - Update

We went through the night without any alarms on Alex's pulse ox. This means his readings did not go below 80% all night. We think that is probably due to the fact that his Midazolan was increased about an hour before bed time. This morning he seemed pretty out of it and we are sure we have seen a few petit mal seizures (space out-like) today. His pulse ox dropped into the 70's and he was very out of it at 3pm. They say these small seizures will lead up to a big one.His hospice nurse said his blood pressure was pretty good and his lungs sounded okay, but he is definitely slowing down. She would not commit to the 72 hours instead she said "no one knows." Steve and I had to discuss what we would do in the case of coma, etc.

So there we are. Someone let me off this roller coaster. Alex seems very happy since his friend Eduardo came by and gave him a talking Spider Man and since he saw the twin's family.

My sister plans to leave tomorrow morning with her husband and son.

God bless you all for your support and beautiful messages.

Gotta go!

G

Sunday, November 25th - 72 Hour Notice

So Alex had a "seizure" last night that lasted about 20 or 30 minutes. During this time, despite being on his oxygen, his pulse ox dropped to the high 50's and it was with great difficulty that he was able to get it to a reasonable concentration. Steve and I were completely scared but calm at the same time. I have never been so happy to see the sun shine on Alex's face as I was this morning!

Today, Alex's pulse ox has been around the 80's without the o2 on and reasonable with it. His mood is fine, but he is definitely slower. His smile still lights up our world!

Steve started off the day contacting dear friends and family and giving them 72 hour notice. I asked the hospice nurse if she thought this was a reasonable time frame (forgive my matter-of-factness here) and she agreed with Steve's estimate.

Due to last night's seizure, my sister and her family decided to stay at least for one more day. Our house was full of friends and family this evening but I could not get out of my grumpy mood. Then Steve took over the grump role and my sister and I put the kids to bed.

If you care to communicate with us and don't talk to us on a weekly basis (and maybe if you do), we prefer that you post a comment on this blog. Otherwise, please allow us the time to be with Alex. I will do my best to keep the blog updated.

Your prayers are most welcome!

God bless!
G

Friday, November 23rd - 24 hour watch

While we were painting pottery today, Alex was holding my hand as I squeezed the writing paint so he could spell out his name on his vase. Very soon after we started the "A" Alex's hand just started going up and down, up and dooooooown, slower and slower. When I glanced at him, his eyes were glazed over and then his head jerked and you could tell he had "spaced out" for a while. Within 10 minutes he had a raging headache and we had to pack up and head home. ON the way, I figured out that Alex had had a seizure. When the hospice nurse arrived she confirmed my fears. Alex must now be under observation 24/7. We have to be aware and available to react if anything else should happen.

Alex is awake and eating like a mad man right now. It seems that the 40% increase in his Midazolam has helped his appetite. I'm completely freaked out now and so very grateful that my sister and her family are here. We all plan to take shifts this evening.

Okay, more later! Think positive, longevity-inspiring thoughts!

Love, G

Friday, November 23rd - The day after!!

Wow! What great comments! Thank you for your notes. I absolutely love to hear how our situation helps others stop and take the time to appreciate the gifts in their lives. Alex is such an inspiration to so many people. AS he (and every child) should be!

Thanksgiving brought us a house full of family and friends; much laughter; some great food and the time to just be! Alex had a pretty good day yesterday. He always perks up so much when his cousin(s) are around! We spent so much of the day in the kitchens (had to use the downstair's one too) that once I was able to just sit and snuggle with Alex I felt so blessed. At one point, when Alex was not doing so well, the horrible thought that this may be his last Thanksgiving grabbed hold of me and I began to cry. I was immediately hugged and reminded that he is here now and given a glass of wine. I love my family and friends!

Yesterday we were not able to be around all of our loved ones, some due to distance others due to the passing of life; but via modern telecommunications and fond memories brought about by old recipes being resurrected we felt the love and warmth of so many souls. It was a glorious day!

So today we hope to go paint some pottery. Tomorrow, visit the new Modern Art Museum our neighbor just "gave birth to" (as Steve puts it) then go watch some bedlam football at a local alumni watch party in Lodo. My sister's family will head home on Sunday but I don't want to think about that now.

Okay, I really just wanted to thank those who posted some incredible comments. I hope each of you have a wonderful holiday!

God bless!
G

Monday, November 19th - There he goes!

Hi everyone. Well, things are somewhat the same as the last post but fear is battling with my hope and faith causing some horrible nightmares each night. You see Alex's heart is beating at about 160 beats per minute. A normal five year old's heart beats about 80 or 90 bpm. If Alex were an adult this high heart rate would indicate only a few days left but since his heart is young and strong then all we really know is that his body is not utilizing the oxygen well and his heart is trying to compensate for the deficient. Speculation is that the tumors are causing his lung function issues and could very well be a part of the heart rate issues. We know his paralysis is worse on his right side. His right eye has pretty much stopped being able to follow a moving object and soon we will have to restore the moisture (tears) it is not producing for him. All of this is happening but Alex's smile and incredible spirit still light up our days!

On Sunday, using the ramps Steve and his friend Mark (visiting from Idaho) made on Saturday, Alex was able to leave the house of his own volition in his new power chair! You can't imagine the joy in this little boy's soul. It was absolutely tangible! His power chair came with five skins of different colors and Alex was told to put on the red skins when he wanted to go fast! So after he made it down the ramps he asked for the red skins! Then we headed out into the alley and around the block. There we found our neighbors and Alex's best friend enjoying the absolutely incredible, warm, beautiful day! We all headed out to the park a few blocks away with dogs and Frisbee in tow. Alex had a great time going fast and even asked Esther for a race on the grass! I don't know who one but who really cares! It was so weird for me not to know where Alex was at all times. I just am not used to his new mobility yet. So we played Frisbee, watched dogs run and did some cartwheels. It was a glorious time! Alex's stomach then started bothering him and he wanted some O2; so we headed home. Alex was not even willing to drive the power chair on the trip home. The rest of the afternoon was spent comforting him and doing anything we could to help him feel better. Alex had to take a bath after his nap at which time we noticed his Broviac line (which he vehemently wants out of his heart) had been pulled out of his body a few centimeters. Luckily, Alex's hospice nurse said it is still okay but I must say all of my nightmares last night revolved around this situation.

So, we are just a few days away from Thanksgiving. I have so much to be thankful for and so much gratitude for it all. I just wish this nagging little voice in my head would stop saying, "this is Alex's last Thanksgiving, will he make it to Christmas?" I've tried to ignore this voice but it is relentless! Then I realize that all I really have is this moment and it really helps me get to the next moment. So here we are again, just striving and thriving from moment to moment.

Okay, I'm exhausted writing all of this inner turmoil stuff. I really just want to focus on the holiday and the fact that my sister's family will be here very soon. I hope each and every one of you know how grateful we are to know you are out there; praying and hoping and crying with us. We love you and wish you a wonderful holiday filled with family, friends, laughter and joy!

God bless!
G

Wednesday, November 14th - Ups and Downs

Good evening everyone. So I know when I have neglected you all when my friends call and start asking about Alex. I love to talk to my friends and so I reluctantly post this update. (that's a funny!) While we are on the topic of friends, I want to say that I have noticed a universal reluctance of close friends to discussing any events, thoughts, or life issues that are on the negative side. I just want to say, "CUT IT OUT!!" I am your friend in good times and bad and I don't want to be treated with kid gloves because Alex has brain cancer. It is not fair that I don't get to be your real friend anymore. Do you really think I want to hear how great things are with you? NO!!! I want to hear your shit and your irks and your frustrations! Please! Let me be a real friend. Don't take that away from me! Is that how I am supposed to treat you when life gets rough for you? Is it all about me? No! Let me be there. I really hope this message is received well. There is no one person that this is directed at. I think the natural tendency of kind people is to be kind and gentle but enough is enough! I'm completely bored, let's spice this up a little!!

Okay, done.

So Alex received his new "power chair" on Monday. He seems to really enjoy "having legs again". You should have seen how excited Zoe was to have her brother ambulatory again. She was absolutely giddy! When Alex went to bed Monday night he said, "this has been a great day!" He even asked if we could take Roxie for a walk on Tuesday. That did not happen, but it is on the agenda.

Alex seems to be "changing". His voice is softer and his drool is much worse. Today his feet and legs were quite cold up to his mid calf as well as his hands. He seems to be dehydrated for the first time since hospice care began but I must say this morning he was incredible! Alex had "evil OT/PT" this morning. He has been referring to it as "evil" because he gets to do bad things like throw leather bugs at his mom and Noni. He gets to kick large blocks and cylinders on us as well. This morning we had an upside down, backwards and opposite day! It was tons of fun driving to his appointment and pointing out the submarines, noodles and whales! Alex decided to stand on the platform swing today and knock blocks onto my back! This morning was really great. That is just how it goes around here. Up then down, then down then up! Flexibility and stamina are key!

So I am having a hard time believing next week is Thanksgiving. Were has the time gone. Did you know that today begins the 9th week of hospice care? These docs don't know anything!! Nonetheless, we have decided not to move forward on the MRI. The benefits just don't out way the risks!

Okay, dinner time and I need to get. Thank you all for your support! WE love you all!

God bless!
G

Thursday, November 8th - Sad day

Good Morning. Yesterday was a very sad day in our home. Alex is doing well, but Steve's employer shut down the 25 million dollar project he has been working on for about a year and a half. Several of Steve's friends and colleagues have been laid off. Steve was one of the lucky ones who had his position redeployed. While we are relieved to have our family's income still coming in; we are very distraught for the others that were not so fortunate. Steve and I have been through a few bouts of unemployment and it is never an easy feat to overcome. My prayer today is that everyone that was laid off yesterday find their new place in the world in a timely manner and with as little hardship as possible. Please know that our thoughts are with you.

So Alex is having a very hard time lately with his swallow and nausea. It's so hard to watch him struggle to eat and drink and even harder to watch his nausea. When Alex is sick he needs to be suctioned and he struggles to breathe. It 's probably the worst part of our days. Of course it could be worse and we know that. Generally, Alex is in fine spirits and is enjoying his days. That is the most important aspect of all of this.

Yesterday, Linda and I did some Christmas shopping. It was very hard for me. No one knows what the future holds but my anxiety about planning for anything is very high at this point. The Starlight Foundation called yesterday and wants Alex to join them and United Airlines for a Fantasy Sleigh ride to the North Pole on December 8th. They require that the child be able to be away from his/her parents during the whole event which Alex can not be for obvious reasons. So the coordinator is going to try to get me on the sleigh ride so Alex can go. When I told Linda about the event she said, "well we just have to make it one month!" There is alot wrong with that statement and it really struck me that we can not take even one month, one day or one moment for granted. I thought I knew this but it is astounding how poignant the realization can be sometimes.

So make it a great morning, afternoon, dinner and bedtime today! Thank you all for caring about our family.

God bless!
G

Thursday, November 1st - Best Mom Ever!

I hope everyone had a great Halloween. Alex took his cousin and sister trick or treating at the new hospital and got lots of candy. You should have seen ZG! She really picked up on the concept and just loved grabbing candy and putting it into her basket. At home, she would run to the door at every knock yelling "Twick or tweet, I do it, I do it myself!" Then proceeded to give out large handfuls of candy to each child. It was a fun day.

Alex had OT/PT yesterday morning and really ended up having a great time. Initially, he was upset because he did not get to sleep in but when it came time to throw the balls at my sister and me; he really perked up. We got Alex back on the Prevacid for his upset tummy. Hopefully this will help relieve his nausea or acid reflux. Last night Alex asked me for his super boot (brace). He said he wanted to stretch his legs and run around; so I got his shoes and boot on him and he stood up with his transformer and tried a couple of steps. He did not go far or stand for long but this is HUGE!!! Alex refused to walk yesterday at OT/PT and has not even looked at his transformer (walker) in over eight weeks if not more! Alex was upset when Evan left yesterday to go trick or treating with his other cousins. Alex has expressed several times that he just wants to run and play like other kids. So I think he thought about it for a while after Evan left and then decided to give a try. Steve and I were so amazed. Alex's strength, courage and perseverance is remarkable! I told Alex that we would resume his leg and arm exercises and keep working with the transformer for as long as he wants.

So, Steve and I went out Tuesday night for sushi. We really needed to reconnect as a couple and it was a very enlightening evening. One thing I learned was that Steve has been worrying about Alex's Pooh Bear for a year now. He expressed this to me and after some thought we decided to let Alex tell us what he wants. So when we got home and I put him to bed I told Alex a story about a little girl who was going on a trip but her brother would not be travelling with her. This little girl has a favorite doll and she is unable to decide whether to leave it with her brother or take it on the trip with her. I asked Alex what he thought she would do. He replied, "take it with her because boys don't play with dolls." Which makes way too much sense, so I went to story numero dos. So then the little girl was going on a trip and had a favorite tshirt. Alex asked if it had a flower on it and I said "no, it has a circle on it." So she has to decide whether to take it or leave the tshirt with her brother. Alex said "she takes it, but makes him a shirt just like it." So there you go. Out of the mind of Alex! Isn't that beautiful? I adore this kid!

Finally, I want to document something that happened earlier this week. First of all you have to understand that sleep schedules are completely off around here. So due to a long late afternoon nap, Zoe and I were up late watching a movie. It was 12:45am and I decided that we needed to go to bed. On the way though, I wanted a bite of Alex's chocolate bday cake. (This was a very yummy cake that spoke to me!) So as I was taking my little bite with ZG on my hip, she said "I want sum." So I begrudgingly shared my bite. Then I thought, well if she took some of that bite then I need another bite. Before you knew it she and I had eaten a whole piece of cake! I am the BEST MOM EVER!!!! I know I am not, but it was a fun moment in our lives and I just wanted to document it. Zoe and I went straight to sleep, in case you were wondering!

Okay, so no decision has been made on the MRI. Alex wants to have another picture of his big brain so he can see if the bump is gone!! I am even more fearful and really don't want to "be devastated again (as Steve put it)" so I just don't know. I am leaning toward not doing it right now but that could change. I still need to get information to make an informed decision with Steve.

Hope your day is a great one!

Love and hugs!
God Bless!
G