Saturday, January 13th

Hi Everyone. Well it is COLD!! My sister has an inch of ice on her streets but we did not get ice (so far) just very cold, cold weather. The sun is shining and it is very deceptive. We went out last night for dinner and Alex was pretty miserable in the cold on the way back to the car. I did not send him to school Friday just because I knew the cold would affect him severely. If you recall, every one of his five senses (except smell) has been affected by this brainstem tumor. He is quite sensitive to touch and temperature. We are working around this, but I am getting a bit of cabin fever and really want to get out of the house.

I think Zoe must have drank some bad milk last night at dinner. She was sick throughout the night but seems just fine now and never had a fever. Poor baby. She is resting again now and on her third set of bedsheets. So far everything she has eaten has stayed down. Let's pray for her wellness!

Well chemo went well and as planned on Thursday. Alex does not have to make up the missed chemo session from last week so that is a huge bonus! He is starting to get used to the process but still exhibits alot of anxiety over that darn butterfly bite into his mediport.

I want to thank everyone for the wonderful comments. It is nice to read them over and over again. Scott, please contact us so I can tell you the dates of the Disney trip. If you don't know how just leave your email in a comment and I'll get in touch. My sister's family is trying to get to Orlando with us and so is my sister-in-law's. I can't wait. All of the feedback says this is a wonderful vacation for everyone.

Well, I still want a puppy/dog but Steve has put his foot down. I just wish this urge would go away. I think about Sheba everyday and as of Friday she was still up for rescue. Well, I believe what my grandmother used to say. "You are exactly where you need to be". So I'll just work on accepting and loving life as it is now.

I hope everyone out there is warm and comfy. I sent Steve out snowshoeing with our friend, Nadine. He really needs to get some mountain air and recreation. He works so hard and I worry about his health. He really looked puny this week and I am happy he is out right now.

God bless and take care!

Love, G.

Monday, January 8th

Good Morning. Well TGIM? The winter break ends and school starts tomorrow. I have mixed feelings about this. I will miss having Alex home all day, but I know Zoe and I need that time for just us. I am pretty sure it will be good for everyone to get back into a routine.

I just wanted to note something that happened yesterday. Well, for the first time since the brain biopsy, Alex walked across the house without his super boot or shoes on. He did not use any supports such as walls or tables. He was carrying a beach ball from the play room to the living room and just walked. I rejoiced! Steve was so proud too! I know it is such a small thing, but it is huge in this house. It means Alex is getting his confidence, strength and stability back. It means he is going through all of this for a reason and that it is WORKING!! I cried just a bit. I felt my heart open and grow with faith and hope for the future. It was a brief glimpse but one I will cherish forever.

I know this all sounds very corny and everyone out there with healthy kids running around, jumping on the beds, and absolutely driving you crazy probably can't appreciate. But if you can, for just today, try to rejoice in the jumping, running and even ability to walk across the house of your little one(s). It is a precious gift that not every child has.

God bless.
G

Friday January 5th

First of all I want to thank everyone who has posted a comment lately. I was beginning to feel like I was doing this all for naught. Anyway, your comments help me and Steve so much. It is like opening a beautiful gift when I see a comment in my "In" box. So please know, especially since I can not respond to the comments individually (unless I have your email address), that I/we are very appreciative of every kind word.

So we got yet another snow storm last night and throughout today. That makes three in as many weeks. I know a lot of people are sick of the snow, but I am reveling in it. I love the snow when it falls, when it glistens in the moonlight and when it crunches under my feet. My only wish is that Alex could enjoy the snow. He is so sensitive to the cold and unsteady on his feet anyway that he won't even go outside unless it is absolutely necessary and then only very reluctantly. I have talked to him and shown him the snow as it falls. He likes to look at it and loves to see the snow covered mountains but we all will just have to wait to build that snowman together.Zoe on the other hand will walk out in the snow barefoot. She absolutely has no fear and loves to experience different textures under her feet.

Today, I had a very hard time waking up, my body felt like it was filled with lead and my stomach was very queasy. I got Zoe to her play date and made it into the office by 8:30 AM. I had to take one of Alex's Zofrans to help with my nausea though. At work I learned that one of my coworkers grandson has been diagnosed with a brain tumor and was scheduled for surgery today. I knew he was going in for the MRI last week and spoke to his mother that morning, but had not heard back from her, even after leaving a message. So my worst fears were confirmed today. My heart sank when told the news and my stomach felt even more upset. This just should not happen to children. How is that I know three children with brain tumors? What is going on? When will it stop?

I have not called my coworker or the mother yet. I want to give them space and time to cope with the "new normal". They both know that I am here and available if needed so I won't be calling to put them through the telling of the tale again. I know it is just so hard every single time.

So I picked up Zoe and came home to Steve and Alex. I immediately laid down and covered up with a blanket on the couch. I did not get up off the couch until I had finished most of Steve's special hot toddy late this afternoon. After that, I had some energy and it finally got the chill out of my bones. We had homemade soup for dinner and I can't drink enough water. I feel better but the absolutely best part of my day has been sharing in Zoe's great mood. She has been so so very happy today. She is talking alot (no, I can't understand everything), screeching with joy and walking around with such determination in her step. She and Alex were watching a DVD and she was sitting there laughing, throwing her head back, slapping her knee then laughing some more. She has been like that all day. Just as sweet and cute and fun as any child could be. I have no idea what has made today different but I did notice that she and Alex really were loving having Mom and Dad around during the holiday break. They both seemed so much more content and joyful (of course all of the gifts, had nothing to do with that). Anyway, it is hard to stay miserable when that joyous energy is in your house. I feel much better now.

My sister's family is coming down the mountain tomorrow to spend the night with us before heading home. We can't wait to have them here. Alex is very excited to have his cousin here. They interact so well together now. Stephanie and I are going to have pedicures tomorrow downtown to continue a sisterly tradition we have. I'm sure we will stop in some swanky place and have a glass of champagne too (gotta love those traditions)! We don't have plans for tomorrow night and that is fine with me. I would be content just hanging out here at the house. There really is nothing I like more than to entertain friends and family and share our home, food and wine.

Okay, well Alex wanted to go to bed ten minutes ago, so I better get. Hope you have a wonderful weekend. Kiss and hug a loved one for me and get a hug and kiss for yourself!

God bless.
G

Thursday January 4th

Well, we went to the hospital today for chemo but did not get it. Alex's blood/ox levels were low again and he has a bad cough. So they did a chest X-ray and it showed that the lower wedge of his right lung is collapsed. He is coughing so much in an attempt to reopen it. So they gave Alex a deep breathing exerciser and sent us home.

Last night was a very difficult one for Alex. He would wake up choking (as usual), then cough violently then get these horrible intense hiccups (caused by tumor on the brainstem). So I am hopeful that we can get him some relief soon.

He asked why he had to blow into the machine. "To get no chemo?" I told him no, that he has to use the machine to help his sick lung get more air and to make his coughs better. Otherwise he would have to go stay in the hospital. I think that motivated him since he asked for the machine and practiced on it for about 7 minutes in the car.

On another topic, I had a dream that we had decided to get Alex a dog. Currently we have Steve's SuperElderly Sage who is 144 people years old! And my dowry cat, Mena who is 8 years old. Steve had said that when Sage passes he would want to get a dog. Ever since I had this dream, it has stuck with me and I keep weighing the pros and cons. Good for Alex, family, activity, companionship, good for dog since we would get a rescue dog; but bad for more responsibility, more money and poor Sage probably could not handle it! So we'll see. Right now I have my eyes on a 8 month old boxer mix in Wyoming named Sheba!! I'll try to attach her picture. I'm sure Steve will love that!!!

Okay, well the plan is for Alex to do his deep breathing three times daily until next week and call Oncology if he gets a fever or something else occurs. So just another bump in the road. Hardly felt this one! =0)

God bless! G

Wednesday January 3rd

Good Morning. Well we all survived 2006! Some people say to us "well the new year can't be any worse than last year". Through my life I have learned to NEVER, NEVER, NEVER think it can't get any worse. And I feel cursed when I hear this comment. So please if you see me, don't tell me it can't get any worse. I would rather reflect on how life is a constant learning experience and each year brings growth and wisdom, even if you don't want to grow or be wiser!

The real reason for this post is to tell everyone that we just returned from Alex's 3rd MRI. Dr. Nick (Pediatric Oncologist) says the tumor has shrunk slightly and that is okay. He explained that the slow process of shrinking has begun and will continue even after chemo treatments end.

Personally, I am just focusing on how much stronger and louder and better Alex has become. His soft voice is gone and he can now yell as loud as any kid (that's good and bad). He has been riding his new Superman bike around the dining room every day (without his feet being strapped to the pedals for control) and at times we see Alex just being a typical four year old boy. That is the best part - the normal, previously unappreciated little things that make my heart sing.

Luckily Steve was able to come to the MRI this morning. Alex got a lot of security from his dad being there with him. Zoe fell asleep in the car on the way home and would not be left alone in the creative play center this morning. We all had a very early morning and I am sure naps are in our future!

Alex is eating his waffles now and watching his shows. We took him to Macaroni Grill last night so he could have the fettucini alfredo with lots of grated cheese! He ate and ate and ate. When we got home he told us his tummy hurt from eating too much noodles, cheese and milk. We told him that perhaps next time he should listen to his body and stop eating when he feels full. He agreed wholeheartedly.

Alex had to get the dreaded "butterfly bite" this morning. He debated all morning until the anethesia kicked in whether to leave it in or have it taken out. He finally decided to have it taken out and just get another one tomorrow morning for chemo. I thought that was such a big boy choice!

On a very sad note, Steve's aunt died last week from pancreatic cancer. While the death was not unexpected it was heartbreaking. Susan lived a full life but never got to meet our dear Zoe before her diagnosis. My prayers go out to my mother and father-in-law and Steve for closure and peace.

Well, my sister's family made it to Colorado Monday evening FINALLY!! They stayed one night then left for the mountains yesterday morning. Alex and Zoe just loved having cousin Evan here to play with them. We were all sad to see them leave but they will return and stay Saturday night then depart on Sunday (unless another blizzard should occur!!) They missed out on four days of their ski vacation due to the last two blizzards making the interstates from Oklahoma to Colorado impassable. These storms seem to be more than just a mild inconvenience for some and I pray that everyone with starving cattle and without power get some relief soon.

Okay, that's the update. I updated the blog to a new version of blogger. It says you can post a comment by hitting the " 0 comments" link at the end of each blog. I can't wait to hear from you all.

Have a great day! God bless.
G

Friday, December 29th

I just want to document a conversation we had on the way to Alex's chemo appointment yesterday. It went something like this.


A: Mom I hate chemo.


G: I know honey, but chemo helps make you stronger. (long pause)


A: No, mommy. Chemo does not make me stronger cuz it takes my energy away.


G: Yes, Alex. Chemo does take your energy away now, but it helps you fight the bump and when the bump is gone then you will have lots of energy.


A: (pause) When we will I be done with chemo?


G: In September.


A: How many days is September?


G: Well, it is 9 months and each month has 30 days.


A: September will NEVER come.


G: It will baby, I promise.


That conversation struck me as so poignant and revealing. We really got a glimpse into how Alex feels about chemo and his recovery. Alex is my hero and as his mother I pray that he did not have to go through all of this. I just have to have faith that this will all behind us some day and Alex will be a better human being for going through this struggle. I also know it will make us all better for going through it with him.



On a lighter note, the snow began yesterday around 10:30am. It snowed until we went to bed at 10:30pm and had 8 inches on the lawn. It obviously snowed during the night and has been off and on today. Steve keeps shoveling the walk ways every few hours. The news reports that we will continue to see snow showers through tonight and perhaps into Sunday. My sister, brother-in-law and nephew have a week long vacation planned in Breckenridge that begins tomorrow morning. She is in OKC and I have no idea how they plan to get to the mountains since I-70 is closed in Kansas and eastern Colorado. I will be praying for their safe journey.



I have some pics of the snow I will post soon. Seems like there is a lot of work to do around the house today even though it is a snow day. Steve started a minestrone last night and we just had some for lunch. Yum! Yum! Steve can make a mean soup!

Well, Happy New Year!
God Bless.

G

Wednesday, December 27th

Good Morning Everyone! Well we survived the holiday, one down one to go! Life was very busy and I thought of you all often but just never made it to the computer. Steve has been battling an upper respiratory illness and we just found out that Zoe has ear infections in both ears yesterday. Two weeks ago she cut all four bicuspids and was absolutely miserable for a few days. She is now on antibiotics and on her way to recovery. I woke yesterday and felt like a block of cement in the bed. It took a great deal of effort to get up and my body aches, so I may be coming down with something as well. But even with all of that, we still had a fabulous holiday.

I have to thank the Harris family and Robby's friends for making Christmas morning so wonderful. I did not count how many gifts they brought to our house but it was a sight to see them all under the tree. Alex was in heaven, opening one present after another; while Zoe was overwhelmed after two presents and decided to take a break in Daddy's arms.

Christmas Eve was very laid back and easy for the first time in my adult life. Steve and I were in bed by 10 pm!! Alex is afraid of a large, bearded man named Santa in our house on Xmas eve, so we put our Christmas cookies, milk and note outside on the front porch. This year when Alex went to retrieve the plate and glass he discovered a shiny, Superman bike! He was so excited, he was actually speechless for a few seconds.

As you may have all heard, we got socked by a huge snow storm a week ago! Luckily we did not have any place to go so it was pretty tolerable. When the snow stopped we headed outside to start digging out along with the rest of the neighborhood. Before you knew it, there was a "snow bar" set up and Xmas music playing in the streets. I love my neighborhood!! The impromptu party continued into the early afternoon then it was nap time. Steve just told me that another 3 feet is headed our way. I am just glad Alex got lots of new games for Xmas. We have already played the game of "Life" and the "Honey Bee Tree" game.

Robby's friends gave Steve a child carrier/backpack. We are so excited to try it out as soon as possible. It fits children up to 45 pounds and Alex is currently at 30. He has lost 10 pounds! I am very scared that he'll need a feeding tube soon. Tomorrow he starts his chemo again and he has his third MRI. He was supposed to have the MRI today, but the appointment went into a "black hole" somehow and had to be rescheduled. So tomorrow will be a long, long day for Alexander. I'm pretty confident that the tumor will show a decrease in size. He is definitely stronger. Last week during PT, he did a leg press machine, rode a bicycle and hopped in moon shoes! His voice is stronger and he has even started to use his right hand more, not alot but when he gets used to it being able to do what he wants he'll put it to use more often.

Well, I am going to try to attach some photos for you. I hope you enjoy them. Please have a safe and joyous New Year! God Bless!

G

Tuesday, December 5th

Good Morning. Well the Make-A-Wish Christmas Store was a complete hit! Alex and Zoe had a blast. Alex got his face stenciled with Santa and a Xmas tree. Zoe entertained the masses with her independence and cute self. Alex has a bag full of wrapped gifts all ready to go under the tree (whenever we get one).

Well all weekend through today the kids have been down with bad colds. Neither has a fever so we have not had to go to the hospital or pediatrician. Thank God!! Zoe and I are starting to get some cabin fever though. Steve left on a biz trip yesterday and these four walls are closing in fast! Hopefully Alex will go to school tomorrow morning. I am pretty sure he is well enough to go to PT this afternoon. It will do him good to see his physical therapist (that he has a crush on) and get moving again. Zoe also loves to play in the gym during Alex's PT sessions.

When Steve gets home we plan to go to Disney on Ice! It is nice to have something fun planned for the kids. They miss Steve so much when he is gone. Zoe came to me this morning and took me to the back door saying "dow steers" (downstairs, for those that don't speak Zoe). She wanted to go see her daddy who's office is set up downstairs as well as his gym and bear cave! Alex said to me a few minutes ago, "Mom, I don't want daddy to go on trips anymore." I told him they are very important trips that daddy goes on for his work. (Steve, I am not trying to give you a guilt trip, just telling it like it is, XOXO.) So like I said it will be nice to have a family outing when Steve returns. Especially since the weekend was a bust.

Well I really can't think of much else to say. Beside the colds, life is pretty uneventful right now. I should be getting the house set up for Xmas, but all the stuff is in the attic and it is too dangerous for me to get down by myself. I think I will enjoy a week off and just take care of the kids. That is a full time job any parent understands!

Hope you all are well. Have a wonderful week.

God bless.
G

Tuesday, November 28th

Hi everyone! Wow, it is almost December! How did that happen? We had a very enjoyable Thanksgiving with our family from San Francisco! Alex and Zoe absolutely adored having two seven year old boys in the house to play with them. We ate turkey, went to a local arcade, did some bowling, had spa treatments, sled down mountains, went shopping; built-a-bears, and had pictures taken with Santa Claus! It was a lot of fun packed into five days. The house seems so very quiet since they left yesterday. Hopefully, we will all be together again in March.

During the Thanksgiving weekend, the Starlight Starbright Foundation gave us tickets to go see "A Christmas Carole". It was a wonderful show and being the "bowl full of mush" that Steve says I am; I cried during the show. For some reason, the message really hit home this year. Don't ask me why! =0)

I can't tell you how great the Starlight Starbright Foundation has been to us. They seem to have events every week that Alex can attend. The next big one is "Disney On Ice". I'll wait to tell Alex about it but I know he and Zoe will love it. In addition, the Make-A-Wish folks are setting up a shopping center for Alex and other children this Friday at the hospital. A volunteer will take him through with $7 and let him shop for the family. Everything in the shop costs $1. Alex will have a blast I know. Make-A-Wish has also granted Alex's wish to go to Disney World in March, 2007. I know this will be a trip of a lifetime. I really am excited to get out of town and have some fun.

Finally, Robbie's Friends has offered to do the Christmas shopping for our family. It really is remarkable how wonderful the community support is for our family and others like us. I can't recommend these organizations enough for your support and charitable contributions. They really have made a difference in our lives.

Alex is doing well and we are about one third of the way through the chemo schedule! Alex is getting stronger and his sweet nature shines through most of the time. Zoe seems to grow smarter every day. I adore my children so much. I really do not know how I got along for so long without them!

I wish everyone a wonderful holiday season. This year has changed our lives and allowed me to appreciate the gifts in every soul. I hope each of you experience the joy, gratitude and beauty the holidays can bring.

God Bless!
g

Tuesday, November 14th

Good Morning. Alex is home and doing well. His blood/ox levels rose around midnight last Tuesday and he was sent home Wednesday afternoon. I kept him out of school Thursday and Friday was a school holiday. Needless to say, life has been hectic around here. I think I am still catching up on the night's rest lost in the hospital. It is just impossible to be comfortable and sleep through all the nurse visits.

Steve and I were able to go on a date Saturday night and had a blast. We had a very good time but were exhausted by the end of the evening. Getting old has its downfalls!

I think that is it. I apologize for not updating the blog sooner. Hopefully, this week will go smoothly. Hope yours is a good one.

God bless.
G

Thursday, November 9th

Alex came home yesterday. Around midnight Tuesday night his blood/ox levels returned to the mid 90's so they let him come home. YEAH! We had an ugly meltdown last night at bedtime but both kids were sawing logs before the bedroom door was shut.

I kept Alex out of school today just to give him some more time to get better. Steve and I are discussing the possibility of taking him out of school since this all started with a pink eye outbreak. There are many pros and cons to a decision like this and we have decided to speak to the doctors about it before we finalize our decision.

I was so exhausted last night that I did not hear Zoe cry for her lost binky at 3:30AM, so Steve got up to help her. He did not fall back asleep and sounds like the living dead on the phone. Everyone here just woke up from a one to three hour nap. We all needed it, I guess.

Okay, well that is about it. Hope your day is a good one.

God bless.
G

Tuesday, November 7th

Real quick. Alex became very hoarse and started coughing after an outing to the park, about 5:30PM. The night was absolutely horrible. He was coughing, choking, coughing, choking all night. Needless to say noone got any rest last night except for Zoe. Alex did not have a fever all night so at 6 AM we were up and calling the hospital to find out when Oncology opened. We arrived at Oncology at 8:10AM and Alex was admitted to the hospital around 1PM. I left at 5:30PM and will be returning to spend the night with Alex.

He is being treated for Croup with antibiotics and steroids. He is staying at the hospital so his blood/oxygen levels can be monitored. They are running pretty low. He is absolutely miserable. When I ask him if he is scared, he nods "yes". He cried about going to the hospital, asked several times when we were leaving and cried about going to his room. This is absolutely tearing Steve and me up. We hate to see our little boy so unhappy. Again, I miss his smile.

I know Alex will be better but this feels like retraumatizing. Please pray for his peace and speedy recovery.

God bless.
G

Tuesday, November 11th

Happy November everyone! Can you believe it? November already! I apologize for not updating the blog recently, it was a very busy couple of weeks getting ready for Alexander's 4th birthday party. The party was a smashing success, I must say! SuzeQ the Clown did a magic show with a live dove and rabbit. Then she painted all of the kids' faces wonderfully. Everyone seemed to have a good time.

As of yesterday at 5pm, I had the house back in order and was ready for some Halloween fun. We did not have as many trick-or-treaters this year as in the past, but we still ran out of candy by 7:15pm.

Everyone here is having a difficult transition off daylight savings time. Steve and I are in bed so early we have to laugh at ourselves. Then Steve gets up at an ungodly hour of the morning. I try to sleep in but I have been awake at 5am the last two days. AUGHH.

So except for some fatigue everything else is going pretty well. Alex loved seeing all of his friends at the party and has been in good spirits the last few weeks. Zoe had a fever yesterday that I attibute to the four vaccinations she received Monday. Knock on wood, we are generally in good health.

Thank you all for your support and I hope your day is a good one. Please vote this year, it seems to be an especially significant election year. God bless.

G

Sunday, October 22nd

Hello everyone. Well, let's just say "no news is good news". Since the ER visit Alex has not had any fevers and his CT scan and Xray came back normal. So they say it was a viral infection. I say it is due to the fact that they dump poisons into his system every Thursday, but that is just me!

Alex did get his "super boot" (a.k.a. foot/leg brace) on Monday. He said while playing outside, "I'm getting used to this super boot". He's only wearing it a few hours a day right now, we'll gradually increase this over a few weeks. It has Spiderman on it and that is what makes it so super.

Steve left this morning on a business trip. To make sure we had some quality time before he left, we went to the Downtown Aquarium and had a very enjoyable time. It will be a hard week without him but when he returns it will be Alex's 4th birthday and party.

We are very excited about the party. We met a clown at the charity event this summer at the hospital and she's coming to the house to do a magic show and some face painting. Everyone will be in costume and it should be a wonderful time! There is a ton of work to do around the house before the party, I just hope I can get the majority of it done this week.

The only negative news is that due to our tight financial situation, I will not be able to continue going to see my therapist. As soon as we can, I will get back to her so this is just a temporary set back. I will miss having someone to talk to but I'm pretty good with just putting my head down and trudging forward! Mental health can always wait! =0)

Well, it is more like winter around here than fall but the snow has been beautiful and I like putting on layers!!! Well, I had better go, it is bath night and without Steve that could take a while. Love to you all!

God bless.
G

Monday, October 16th

Good Morning. Alex went to school Friday and now I am thinking that was a bad idea. Sunday morning at 4 AM, Alex woke up needing to go the restroom. I think that is the first time in his life that that has happened, btw. As I helped him, I noticed that his body was extremely hot. I took his temperature and it was 103.7 degrees. Well anything over 101 and we have to call Oncology. The doctor on call wanted Alex in the ER asap. So Steve took him in. There was a serious issue with two children, one of which died, so Alex and Steve had to wait a couple of hours to be seen. Alex could not have any fever reducing medicine during this time because they wanted to do a blood culture before his fever went down. Long story short, Alex was given some more intravenous antibiotics and sent home at about 7AM.

We have to go to Oncology as soon as he wakes up this morning. It's 8 AM and he is still sleeping. This made for a long day yesterday, but we were still very productive and able to work on the kitchen. So Alex will miss another day of school today. I just hope they can figure out what his body is battling and that he feels better very soon.

Okay well that is it. Alex just woke up and I gotta get things rolling. Hope your day is a good one!

God bless.
G

Thursday, October 12th

Good Afternoon. Alex woke yesterday morning with a smile on his face. It was a beautiful smile and one we all missed. He had rested comfortably since about midnight and I was sure he was getting better. So Wednesday morning, Steve and I left the kids with Courtney (thanks again!!) and went to Alex's IEP (Individual Education Plan) meeting at his school. We learned that Alex ranks in the 95th percentile on cognitive abilities which would place him in the "gifted" category. Well, we always knew he was smart so now others know it as well. Also, Alex's language is above par and it seems everyone who assessed him really enjoyed getting to know our precious little boy. So that went well.

Steve dropped me off and went to work. Alex, Zoe and I did some shopping and had lunch then headed for the hospital. Alex did very well with his second round of intravenous antibiotics. His mediport was deaccessed and chemo was cancelled for the day. Alex fell asleep in the car on the way home and had a three hour nap at home. Zoe did not nap after the car ride so we shared some time together.

When Steve came home I pulled out a pesto Tilapia dream dinner to prepare but Steve and I agreed that it would be a good idea to take Alex to his favorite restaurant since he had not eaten in two days. So off we went, well the wait was longer than we were told and Alex was getting very grumpy because he was very hungry. When we finally got a table, we ordered Alex's meal immediately. He ended up only eating a few bites then started crying and asking for medicine. He felt very warm so we headed home. I called Oncology to ask why would he have a fever after two days of antibiotic treatments. The doctor stated that his ANC count was good and just to give him some Tylenol. So we did and put him and Zoe to bed. Alex was very restless through 1 AM but woke this morning feeling better. I was going to send him to school today, but since he had a fever last night that option was out.

This morning, I have cleared a lot of items off my "to do" list and now am just waiting for Zoe to wake up so we can go to the park, have a picnic and run a couple of errands.

On another note, Zoe has started potty training. Monday she watched Alex use the toilet quite intently to Alex's chagrin and then kept signing "toilet" and pulling her pants down in the bathroom. I think that is a clear sign the kid is ready! Well Tuesday night I pulled out our kid toilet and showed Zoe how to use it. She spent the next two hours walking around the house without any pants on and sitting on the potty. I figured she was just getting used to it, but I found out later she had actually peed in the potty. I was impressed! Well that has not happened since but we will keep working on it. Alex was pretty well potty trained by 18 months and we were successful using cotton training pants with vinyl liners. Unfortunately, I can not find cotton training pants for a 20 pound child that are reasonably priced. I ended up buying a pull up with "cool alert". We'll see how this goes. I may just have to make some pants for Zoe. If anyone out there knows something I don't please let me know.

Well, the weather here is absolutely spectacular. I hope you get a chance to enjoy your weekend! Have a great day!
God bless.
G

Tuesday, October 10th

Well this has been quite a day so far. Alex felt very hot during the night but was resting so this morning I took his temperature and it was 102 degrees. When he woke up and moved to couch he said his head hurt and was crying due to a great deal of pain. Well that means I have to call Oncology. Of course they said "come on down"! I rechecked Alex's temperature and it was 101 in the left and 103 in the right. So I gave him some Tylenol and got everyone dressed and into the car.

Upon arrival, they applied some "magic cream" so they could access his mediport for a blood draw. The doctor looked at his ears and there is a bit of inflamation in the right ear but the left is fine. They gave Alex some antibiotics intravenously because they are concerned about his mediport line getting infected. His blood platelettes were low so they could not give IB for pain, instead Alex got two doses of morphine. This still did not control his pain so the doctor ordered a CT scan to check and see if Alex's brain was hemorrhaging. The CT scan came back okay but his blood work showed he does have an infection somewhere. We were sent home at this point. We will have to return tomorrow for more intravenous antibiotics then Alex will be put on orals.

Steve showed up while we were waiting. After the whole five hour ordeal was over he said to me "I don't know how you do this every day". I told him, "I don't do this everyday". But I understand what he means. No longer can an ear infection be a trip to the pediatrician and pharmacy. Now it means a trip to Oncology and Radiology and the fear of brain hemorrhaging! Oh how we long for the good, ole days!

Well, I need to pay some attention to the kids. Gotta go.

God bless,
G

Saturday, October 7th

Okay, well the last two nights have been no fun. Zoe woke at 2 AM Friday morning with a temperture of 101. She stayed home while Steve tried to work. She was pretty miserable all day and especially last night. For the first time in her life, Zoe slept in our bed all night. She would wake up just screaming at the top of her lungs. In addition to Zoe, at about 10 PM last night, Alex woke up coughing, I tried to help but to no avail. Next thing I know, he went very rigid (his right arm was straight out behind his back) and his face was somewhat frozen in a very ugly manner. He was crying then all of a sudden, his eyes closed and he was asleep in my arms. He woke up about 10 seconds later and started crying again and his arm went back to normal. Can you say FREAKED ME OUT?!! Well, I immediately called the Oncology department and told the doctor on call that Alex had had a seizure. He asked a lot of questions, most of which the answer was "no" and decided to call another oncologist to get a second opinion. In the meantime, Alex was resting peacefully and our eyes were slamming shut, so we went to bed with the phones right next to me. I'm not sure when the doc called back but it was after 11 PM. He said that it probably was not a seizure but "something else" (no, I did not ask) and that if it happened again or if Alex started shaking he would need to come to the ER for a CT scan.

Well, isn't that a lovely thought to put any parent right to sleep? Needless to say, our night was not restful. Alex woke with a temperature of 99 degrees this morning and is in a pretty crummy mood on the sofa watching his shows. Looks like he will be having a "pajama day". The fever could be related to the chemo and our directions are to call if he has a fever over 101 degrees. Alex kept waking up throughout the night coughing/choking due to his poor swallow response, but he did not have any other "episodes".

Oh dear God, this is going to be hard isn't it? I will never say, "it can't get worse" because I have learned that lesson throughout my life. I really just wanted the "feel good" phase to last a weekend at least. Oh well, the sooner we get used to this the easier it will be.

Last night I showed Alex all of the sites at Disney World. I told him to think about his wish. He seemed excited and did not want to stop at 8 PM but I told him we could do more research today.

Fall is in the air and this is my favorite season (as well as springtime). I hope everyone has a chance to stop and smell the pumpkins!!

God bless.

G

Thursday, October 5th

Good afternoon. Today was the first day back to chemo since September 14th. Alex did very well, but still has a great deal of anxiety and fear associated with the butterfly bite. His play therapist offered some ideas to help. One was to practice deep breathing, relaxation in a peaceful environment. She suggested a DVD from www.gaiam.com that is Yoga for kids. I checked it out and spoke to Steve about it last night. He would rather Alex be in an actual yoga class. So if anyone knows of a yoga class for kids, please let me know. If there is not one, I think it is a fabulous idea to offer yoga for families or just kids. I know I miss my yoga days.

While we were in the infusion room today, the social worker came in and offered to submit Alex's name to the Make a Wish Foundation. She explained that Make a Wish is for any child with a chronic illness that has/will receive six months of treatment. When she asked Alex what he wanted for a wish he said a magic wand! He wants to be able to make things invisible as well as himself! Anyway, she started talking about Mickey Mouse and he became very excited. I called Steve and his immediate response was one of fear which is what I felt too. I explained the Disney trip perks and he was okay with the idea. Being at work and hearing about this probably was not the best situation for him. Anyway, I am sure there is plenty of time to talk about this. Ultimately, I want Alex to enjoy his wish and for it to be a trip he can really partake in the activities. My first thought is to wait til he is finished with all of the chemo and has his strength back. The doctor recommended that we not put it off for so long and enjoy it sooner than later. We'll just have to see.

On the self acceptance front, I am still struggling with the concept but think it resembles something like the love I have for my children. At least I am working to get there. My therapist predicated this effort by stating that it is one of the most difficult any person can take on. No wonder!! Well doesn't this just sound like a bowl full of cherries?

Well to end on a positive note, I must say that the tension in the house has decreased dramatically. I feel like the weight of the heavens has been lifted and I can breathe again. I know the road ahead is still very long and will have many obstacles and detours, but I also know we are on the right path!! This is huge! I have smiled more in the past week than in a very long, long time. I look forward to enjoying the fall colors as well as all of the wonderful blessings associated with the holidays. Life is good!

Okay, enough with the cliches and metaphors. I sincerely apologize! I hope you all have a wonderful weekend and are able to enjoy your blessings.

God bless.
G

Sunday, October 1st

Well, I really do not know how to express how much relief we feel. Thursday night I had a dream in which I was truly happy. I felt content and very full of life. It was weird to wake up and realize the difference between reality and the dream. Since I have tried to redirect my mind back to a state of happiness, contentment and joy. I am trying to see the many wonderful blessings in my life and ignore the negative, inner voices that want to steal my attention. This will take some practice, but hopefully eventually I will get there.

Alex seems to realize that he is getting stronger. I think he feels validated a little as well with the MRI results. I want to get photos of the two MRI's to show him and possibly share with everyone here on the blog.

At Alexander's last play therapy date, he indicated that his self worth is very low right now. The therapist explained that his body has betrayed him and he really doesn't feel good about it. This broke my heart, but again, I have to focus on the fact that Alex is getting help with this and it won't stay like this forever!

Big picture, baby steps, whatever cliche gets me through the hour! I want to send big hugs and kisses to everyone who has helped us along this journey. You know who you are! I love the comments and they keep me going. Please don't stop. I will do my best to keep the blog interesting! =0)

I hope everyone is enjoying some cooler weather and the beauty of autumn. God bless.


XOXO
G