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

Thursday, September 28th

Good news! The tumor has responded to the chemo!!! It has gone from golf ball size to walnut size. It is visibly smaller!! Oh Thank you dear Lord! Thank you dear friends!! I really felt everyone's positive energy today.

Steve should be home soon and I can't wait for a huge family hug! More later.

With all my love,
G

Sunday, September 24th

Good Morning. This past week has been somewhat of a trial, so I apologize for the lack of updates. Monday started with a swallow study at Children's. They found that Alex is doing a good job of protecting his airways but food is sitting on top of his esophogial sphincter and accumulating and getting very close to his airways. This causes a violent cough at times and a lot of discomfort for Alex. If it were you and I, we would feel like something was stuck in our throats. Alex does not get that sensation. I really don't know what to do with the information. They asked that Alex learn to dry swallow; which he has. Unfortunately, it does not seem to have made much of a difference.

During the swallow study, the nutrionist made the point that Alex is not getting good nutrition on his current diet of waffles, pasta and root beer. So upon her recommendation, we have added a "complete" vitamin to his morning and I am trying everything to get him to drink his vanilla milk (instant breakfast). So far he has not finished one glass. Oh well, he is eating his rainbow meals, and we won't give up on this one just yet.

WARNING!!! THE FOLLOWING PARAGRAPH MAY CONTAIN TOO MUCH INFORMATION, READ AT YOUR OWN RISK!!!
Tuesday, I saw my therapist for the second time. She has asked me to write down "what would happen if I were to accept myself". Accept myself? What does that even mean? Do I accept that I am out of shape, overweight and a control freak? Do I give up on my dreams to be fit, active and more carefree? This assignment has put me in a complete funk all week. It would be so much easier to accept myself if I were the person I want to be, instead of what I am. Does that make sense? Do you ever feel like that or is it just me? Okay, so now you have a glimpse into my dysfunctional self. Please don't use it against me! Let's move on, shall we?

Just to add more stress to the situation, I am extremely anxious about Thursday's MRI. What if the chemo is not working, what does that mean? Oh dear God, please let there be good news Thursday. This feels like the two weeks before we had the first MRI, when Steve and I just had to wait and pray and cry. I'm actually crying now. I really am so very frightened.

So all of this stress and late bedtimes has resulted in loud voices in our house. I hate loud voices and next week while Steve is traveling, I will do everything in my power to get the kids to bed by 7:30p.

Okay, how about some good news? I have to give a shout out to Eric, Courtney, Tina and Kathy. Each one of these lovely people has offered help with the kids that has/will make life so much easier. Also, thank you all for the comments. I really rely on them to keep me going.

Alex reached his goal of 33 checks on this week's responsibility chart by Friday, so we went to the movies! We saw "Everyone's Hero". It was a good movie and I would recommend it. Christopher Reeve directed it and it has a good message. Alex also got his goody bag three times this week. He only had to get checks for "eating a rainbow meal" and "drinking a milk". That is three more than each of the last two weeks. So that is huge in my book!

Lastly, after much consideration, Steve and I have decided to take Alex out of his afterschool program. Currently he goes to school from 9 to noon, then on Monday, Wednesday and Fridays stays till 3:45p. This has created a lot of confusion and not allowed for much structure for Alex to get used to. In addition, he is not always there for 3 afternoons a week due to his many appointments. So instead of spending the money and creating less structure, Alex will attend school in the mornings only. Wish me luck!!

Hope everyone is enjoying autumn, it is lovely here in Denver. God Bless, Kiss a baby for me!
TTFN, G

Saturday, September 16th

Well it is 7 AM Saturday morning and I reallly wanted to sleep in but Zoe woke up cold, so I brought her to our bed. My head started going and now I'm up. It is a very sweet sight to see Steve, Alex and Zoe all in the bed. I feel truly blessed.

Chemo went well Thursday. It was our tenth infusion so Alex gets a two week break (of sorts). On the way out of the Infusion Room, he told three strangers "I don't have chemo for two days, weeks!" I think he was excited about that!

Steve stated Thursday night, that Alex was losing his hair. I told him he was wrong, but I know it is true. This is heartbreaking to me. First of all, they told me he would not lose his hair. So what else are they wrong about? Secondly, I don't want Alex to look sick. The bald children at TCH make me very sad and Alex has always had such a beautiful head of thick brown hair. This morning I realized that if he loses his hair his incision scar will be visible and the other children will see it. I don't want Alex to be "different" or teased. I'm very sad about this, but if it is what must happen to get Alex well then I need to come to terms with this. If anyone knows how to talk to chemo kids about hairloss I would be very interested for some helpful guidelines here. I will call the nurses Monday as well for some advice.

Just to top this all off, I found out this week that my biological mother had a stroke in August. She lives alone in Alabama and we have been talking on the phone since 2003. She sounds very bad due to some paralysis. She has a stutter and it is very difficult for her to speak. When I hung up the phone, I wondered if I should bring her to Denver so she would not be alone. I called Nadine and asked her to come help me process this one. Later that afternoon over a glass of wine, Nadine listened to the facts and then told me I was CRAZY! She made her point quite convincingly and we will not have a permanent house guest any time soon.

Speaking of crazy, I finally went to see a therapist. As anyone who knows me knows, I have been crazy for a long time! My appointment was yesterday and I spent the hour doing a download of the last 5 years, focusing mostly on the events since June. It was an interesting experience to tell the story strictly from my point of view. There were many tears and I felt some relief when I left. The therapist was making notes the entire time and her first words were "When can I see you again?"!! So I booked an appointment for next Tuesday. If anyone out there can watch Zoe Tuesday from 11:30 to 1:30 I would be very grateful. We had to pay a babysitter yesterday so I could go to work and this appointment and at $10/hour it does not really make sense.

Also, I need some help with Zoe on Friday mornings. On Fridays, there is an open desk at the office and it works out pretty well for everyone at that time. If anyone has any ideas please let me know.

Okay well that is it. The weekend looks to be a great one! I get a haircut this morning and the sun is shining and it feels like fall outside! As an FYI to anyone interested the Snowmass Hot Air Balloon Festival is going on today. There is a moon glow this evening that is just spectacular! I highly recommend that you get out of town, see the fall color and enjoy the mountains!

TTFN (tah tah for now, as Tigger would say). God Bless.
G

Tuesday, September 12th

Good Morning. Well we now have a blue Crowntail Betta fish named Cosmo (after a Fairly Oddparent). We were this close to naming it Wanda (the other Fairly Oddparent) but since it is a male, Cosmo won out. Alex has been very good about feeding Cosmo and we are hopeful he will be our pet for a long time.

Alex's first play therapy date was yesterday. We will continue the sessions once a week for a while. She hopes Alex will show her his feelings through play then they will work on empowerment over his feelings and fears. She said that kids who have suffered such invasive and extensive medical procedures often present issues (fear and anxiety) similar to Post Traumatic Stress Disorder. I felt validated when she said this because that is what I feel Alex is experiencing as well since the MRI and brain biopsy. I am very hopeful that Alex will become less fearful through this play therapy.

I had a shock yesterday. I came home and had a message on the machine reminding us of Alex's MRI tomorrow. I completely freaked out. I'm not prepared! I have not prepped Alex! I called Radiology and explained that we wanted to wait until Alex had completed ten weeks of chemo and was on his two week break. Last Thursday I was told the MRI would be on the 21st. I told Steve and he cleared his calendar. So long story short after three phone calls and near panic I cancelled today's MRI and booked it for the 28th. The problem with this date is that Steve will be in Boston. If you recall he was in Boston during the first MRI where they found the tumor; so this just creeps me out. Besides, Alex and I would love to have him with us during this one.

Our prayer now is that the tumor is responding to the chemo and that a significant change is visible on the MRI. I don't know what I'll do if the news is otherwise. It is my greatest fear at this time. I know I will be doing a lot of praying and positive imagery for the next few weeks.

Okay, well I should get to work. This is a very busy week and the house is a pit! I hope you all are well. God bless!
G

Saturday, September 9th

Just a quick note to let you know that Alex did pretty well Thursday. His weight is up to 16.6 kg and he has been in a pretty good mood since. He is still experiencing separation anxiety at the new school, but is in good spirits when I pick him up. Alex has one more week of chemo then a two week break at which time he will have an MRI done to detect any changes. My fingers are crossed for good results. Alex's blood count is down again, but everyone is optimistic that it will go back up during the two week break.

Alex got 25 checks this week on his responsibility chart and we are heading out to get a fish. He is very excited and it should be a good time.

Love to you and God bless!
G

Wednesday, September 6th

Good morning. We just dropped Alex off at his new school and it was pretty ugly. I know if he were feeling better he'd be okay with this transition, but since he does not feel well it is all that much more difficult for him. At pick up yesterday, his teacher said that Alex had had a good day except for the last ten minutes when he started to miss me. Today he will stay three hours longer and I am anxious about how he'll do. Hopefully, everything will be just fine. Usually Alex perks right up around other kids.

Steve's parents left this morning. We had a good visit and the house seems very quiet without them here. Linda went to physical therapy with us yesterday and Alex enjoyed showing off for her. He did very well at PT but fell twice yesterday for no apparent reason. I know he was tired, but he has been tired before and not fallen. Steve and I are invited to worry about this, but Linda reminded us that the doctor said it would be six months before we saw real improvement in Alex's presenting issues. So far we have completed two months and I'm still hopeful. It just pains a parent to see your child weak and not able to do the things that other kids can do.

On a lighter note, over the holiday we went to a friend's farm and Alexander got to ride tractors. He had so much fun. It was just what the doctor ordered. He was smiling and excited! It was great. I will do my best to download the pictures soon so I can share those with everyone. They are so great! Thank you Tall Steve and Nadine!

Okay, well the task at hand is to get speech therapy to call me back; establish a schedule for our weeks; and get caught up on all of the household paperwork. I guess I had better get started.

Love to you all! God bless.
G

Friday, September 1st

Happy Friday everyone. Chemo went okay yesterday, Alex still has a great deal of anxiety over the poke. We did find out that his blood count (hemoglobin) is low and if it drops another point he'll need a blood transfusion! That information scares me, I don't know why. I'm just praying that it never comes to that. Alex also had another chest X-ray yesterday to see if his cough was due to material in his lungs. It came back as negative. We are very grateful for that.

Alex woke up last night screaming and hitting his head with his hand. I asked him if he had a headache and he said "yes" so I gave him some Tylenol and he went back to sleep. He never used to have headaches and it pains me to see him in such distress. Once we got home and Alex got his much needed and overdue nap in, his spirits were good. Steve's folks arrived yesterday and we all went out for Chinese food. It was a very pleasant evening.

Today, Alex will be fitted for shoe inserts to stabilize and correct his gait. I have high hopes that this will improve his stability. He has had a very difficult time this week and seems quite wobbly.

While we were at chemo yesterday, Zoe stayed with a friend and her kids. She had a blast and I was so grateful to be able to focus on Alex and his needs during the chemo session. Thank you Tina!!

I hope everyone's holiday weekend is joyous. Big hugs!

God bless.
G

Wednesday, August 30th

Home sweet home. Well we had a pretty good trip. The kids did fine on the airplane and they both loved being around their family, especially cousin Evan! My aunt Jennie and Grandfather came by for a visit Sunday. Jennie and I started talking and long story short-we bought her car. The deal was great and we know that she takes excellent care of her cars. So I drove home yesterday with two kids through Kansas. The kids were great. Zoe did not want to get back in the car seat at the last fill up, but we all made it home safe and sound.

A second car is going to make life so much easier for us. Steve no longer has to spend 3 hours on the bus each day and can spend a lot more time with the kids, who miss him. I won't have to drive to pick him up when and if he works late as well. I am so grateful this all worked out.

Alex did very well. He only got cranky late Saturday afternoon which could have been due to the lack of nap. Zoe was a hit with everyone. They all loved seeing her fiesty personality.

Unfortunately, Alex did miss his first two days of school. I kept him home today just to get some rest since we did not go to bed until 11:30 PM CST. He'll start next Tuesday and hopefully a routine will get established soon. I am spending the day getting the house in order for a visit from Steve's parents. They recently moved to Yelm, Washington and decided to drive to Colorado for a visit. It will be nice to have the guest apartment downstairs for them.

Okay, well I have to get going. Wish us luck tomorrow at the chemo appointment. I have a lot of questions for the doctors, but generally, I would say Alex is improving. I just see that we have a long road ahead of us.

Take care and God bless.
G

Thursday, August 24th

I am going to try to keep this short and sweet. Alex's chemo started off with alot of anxiety and crying on Alex's part, but once the "butterfly" was in the mediport he turned it around and enjoyed playing video games. Alex weighed in at 16.3kg!!!! I'm so happy about that, I could scream. Since his head tilt is pretty much gone and other positive signs, the MRI has been put off until its regulary scheduled time at the end of 12 weeks of chemo. Today was seven.

Zoe came with us today and did pretty well. She got sleepy at the end and even though we had our own room, was not able to rest until she got in the car. Alex still coughs during the night but the audible breathing has not reappeared. So thank you all for your prayers. Once again, it has worked out. Whew!!

I would like to take this opportunity to respond to some of the comments, since I have not learned how to do so individually. First of all, Joe M. where are you? Are you okay? Please let me know, I am worried about you. Next, Shantall, thank you for your comments, you always have such encouraging and supportive words. I hope we can meet someday. Finally, Tracie, I'm still waiting for that call, Grandma!!

Okay, I have a thousand things to do before we fly out tomorrow morning. Love to you all.

God bless!
G

Tuesday, August 22nd

I tried to update the post this morning the system was down. Last night was absolutely horrible. Alex was sleeping between us, when his breathing woke me up at 2:30 AM. His breathing was audible, gurgling or purring almost and he was coughing alot. I listened for quite a while then woke Steve. He had me turn on the light to look at his color. We then had to make a decision whether it was weird congestion or fluid in his lungs. After an eternity, we decided that since he was not straining to breathe and his color was good, that we would wait until morning. Needless to say, it was nearly impossible to sleep after that. Steve had work to do so he got up and went to the computer. I listened to Alex's breath, prayed and eventually fell asleep.

This morning Alex's breathing was just fine. He was still coughing off and on but his mood was great and he ate all of his breakfast. I started feeling better, until I called the oncology department. The nurses took my report to Dr. Foreman who ordered an MRI. I bargained and got a reprieve for two weeks (hopefully). The doctor said that since there has been a cumulation of symptoms indicating the tumor is getting worse, they need to find out if it is responding to the chemo treatments. I really can not explain the fear this statement put in me. What does that mean? The tumor is not responding? They promised us it would respond and that Alex would get better! Does this mean more chemo? I know surgery is not an option, so where does that leave us?

I had to reign in my fears and anxiety and just focus on the day. Alex had physical therapy this afternoon and showed some improvement in his endurance. I took that as a positive. I also took relief in the fact that Alex made a concerted effort to get to the goody bag today. He ate his breakfast, drank his milk and had one of two glasses of water down before noon. As we were driving to pick up Steve, Alex suggested some new tasks for the next reward chart. He thinks we should have drinking all of his milkshake, being quiet and sleeping in his bed should be sticker worthy activities. This really made me laugh and we may just have to accommodate his request next week! I am happy to report that Alex finally got 5 stickers in one day and was able to get a goody this evening. He was very excited! I am very proud of him for not giving up. He had had four stickers each for Sunday and Monday and was very sad last night. I just adore this kid!

Anyway, the day has been long and very tiring. The whole family took a nap this afternoon and we are still exhausted. My prayer tonight is that Alex sleeps quietly and peacefully with no audible breathing and that I do not have to call the oncology department tomorrow.

Good night and God bless.
G

Monday, August 21st

Happy Monday, if there is such a thing. We had a pretty good weekend. Alex's cranky day moved from Sunday to Saturday this week. Luckily it was a cloudy, rainy day Saturday and we really did not mind. Yesterday, we took the kids to the zoo and enjoyed the beautiful weather. Alex had an episode at Tropical Discovery, but otherwise it went pretty well. We spent three hours there and were ready to come home. Zoe took a good long nap and Alex just laid down but was in a better mood afterwards, which is really the whole point of naps.

So in an attempt to get Alex to eat, we reworked his reward chart. This week's rewards include: eat all of a meal; drink one glass of milk; drink two glasses of water; play outside; brush teeth and nap. If he gets five of these done in a day then he gets to go to the "Goody Bag" which was recently restocked with all kinds of fun stuff. After twenty reward stickers Alex will get a SpongeBob camera and after thirty stickers a trip to Lakeside (before they close for the season). So far Alex has eaten two meals. I'm very hopeful this will do the trick.

The doctor and I think Alex has probably lost his sense of taste on the right side. I asked about his ability to smell and was informed that smell is the only sense that does not travel through the brain stem. It has a direct link! Fascinating!

Ok, well this will be my first week as "stay home mom with two kids"! I am trying to plan activities for our free time. Alex has three appointments this week (so far) and I need to get into the office tomorrow.

We love your comments. Hope everyone has a wonderful week.

God bless.
G

Thursday, August 17th

Hi all. Well today went pretty well. We left the house at 7:45 AM and dropped off Zoe at a former classmate's home. Then Alex and I went to the hospital to get his chemo. Dr. Foreman came in first to talk to us and exam Alex. He said doing an MRI at this time is a bad idea, because generally things look worse and everyone is invited to get upset. He said Alex's aspirating on solids is not really an issue as long as he is successful at keeping fluids and solids out of his lungs. So to determine that, he ordered a chest X-ray.

Dr. Foreman also mentioned that Alex's weight loss is normal as well at this stage of the game. Alex has gone from 17.2 kg to 15.8 kg. Last week he was 16.2 kg and I really thought we'd see a weight gain or at least maintaince. I was very surpised that Alex had lost even more weight. They said there is a point that they'll take action (g tube) but did not tell me what that point is and I did not ask. So instead of asking Alex to eat the Pork Carnitas I whipped up from my dream dinners last night; I made his SpongeBob Super Mac and Cheese as he requested. He ate 2 servings as well as his grapes and broccoli. Dr. Foreman also recommended that we meet with a dietician next week during the infusion. I'll be interested to see what he/she says about this situation.

Okay, so off to radiology we go because there was enough time before his vincristine order was ready. Upon our arrival, I am told it will be "a few minutes" to get the insurance pre-authorization. So we sit and wait. An hour later it's 10:15 and Alex still does not have his infusion done and he needs to be at the charity event at 11. I decide to head back upstairs to the infusion room. We get Alex's infusion done in 10 minutes and are done with Oncology for the day!

At the race track, Alex was very uncooperative and ready to go home. I even called Steve to see if he could get Alex out of his funk, but Alex would not even speak to his father. So I diverted! Alex was soon operating a remote of a toy car another little boy had brought. So for the next 30 minutes, Alex played and then watched the big boys play. At race time, he was smiling and much more cooperative. Our team was from 105.5 Jack radio. They were all very nice and supportive of Alex's driving. Needless to say, we did not win, but did have a wicked crash!

After the race, we had to wait for Alex's surprise. I got him some lunch and once his blood sugar rose a bit, Happy Alex showed up. It was great, he was smiling and talking to everyone and cracking himself up. We even made a new friend of the morning DJ! She loves dream dinners too, so we are going to try to meet up there again soon.

So after the race, Alex was given the race car. It is very nice and very fast. Alex is so excited. He carried the remote around for the rest of the day. When we got to radiology, everything was in order and we were done with his X-ray in no time. Then we went and had Alex's face painted. Alex picked out a bat design and felt like a super hero afterwards.

Needless to say, we were very tired when we picked up Zoe. Both kids fell asleep in the car but were wide awake when we got home. Zoe really needed some mommy time and would not let me put her down for quite a while.

I can't tell you how great it was to hear that Alex did not need a MRI at this time. I felt validated and a great deal of relief. I'm learning to listen to my instinct more these days and it pays off every time I do. There is just so much noise sometimes that I can't hear it. Dr. Foreman is going to try to get Alex's speech therapy done at his school and I have rearranged his OT appointments to proceed infusion on Thursday. So in two weeks we may be down to two trips to the hospital a week instead of four!!!

Well, I still need to go to the store for milk and an anniversary card. Steve and I will celebrate our fifth wedding anniversary tomorrow! Neither of us can believe it has only been five years. So much has happened in our lives. Does anyone remember the Christmas letter? Remember how we just wanted a boring year? Well, this is anything but boring!!

If anyone wants a playdate let me know. I know the kids would love to see their friends! Love to you all!

God bless!
G

PS-Tracie how did this happen? How is it you are a grandmother? I'm having a hard time with this one!! I still think of us as the girls up to no good!! Call me if you can! Love you!

Wednesday, August 16th

Good Morning. I realized that I needed to update the blog last night but just now got around to doing it. Since I was having such anxiety about today's MRI, I called Oncology Monday and spoke to Alex's nurse. I expressed my fears and asked if we could wait until Alex's doctor, Dr. Foreman, actually saw Alex and decided that another MRI is necessary. I just want someone who really knows Alex and understands what he has gone through to make this decision. The nurse agreed and the MRI has been cancelled! We'll see Dr. Foreman tomorrow and make a decision then on how to proceed.

Alex is do pretty well these days. He's resting, eating and in pretty good spirits. I think this can be attributed to two things - sleep (feels safe again) and that he did not get the carboplatin last week. Alex did have a nightmare yesterday during his nap and he has slept with us the last two nights, but Steve and I are willing to do whatever it takes to help him feel secure. He is still aspirating on his food but I think he's getting used to it and it appears that his appetite is back. He has told me twice in the last few days that he is hungry. Whoo hoo!!! Music to my ears! We'll see if any weight has come back tomorrow.

Lil Miss Zoe is awesome, thanks for asking everyone. She doesn't blink an eye when Alex is in a bad mood and tries to take it out on her. She just keeps on him. I am officially a full time Mom now. I know I can do this but it will be a transition for everyone. I've got "prepare a schedule" on my to-do list for me and the kids so we can have some structure. It will be hard though. I will miss seeing the kids, teachers and parents at the old school. I hope to have lots of play dates!

I also want to thank, Pati, Oza and Milan for the wonderful massage! If anyone needs a great massage I know the person! I was in such good spirits afterwards too. Unfortunately, my muscles revolted Sunday and tightened right back up. I guess I will just have to make time for more massages until my body gets used to them! Hee!!

I have booked a flight out to Oklahoma with the kids before Alex starts school. Alex really wants to see his cousin, Evan and it will be good to be around my family for a weekend. I have never flown with two kids before. It should quite an adventure.

Alex has been asked to participate in a charity event at the hospital. He'll have his chemo appointment early and then will get to drive an oversized remote control car around a track with his team consisting of corporate sponsors and local celebrities. He does not know it but at the end of the race, they will give him the car. He just may make it on the news, too. I'll try to remember my camera and take lots of pictures.

Okay, well we have an appointment to meet Alex's new teacher this morning and I have my first dream dinners this evening. I'm looking forward to a good day! Hope yours is just as good.

God bless!
G

Friday, August 11th

Okay, just a quickie to let everyone know all is well. The second mammogram did not show any abnormalities. They showed me a spot on my right breast that caused them concern. For a minute or two, I did experience some real fear but I was able to pull myself out of it. Whew!

Also, to let everyone know, Alex has slept in his bed for the last two nights without any night terrors. This is a true miracle and we are so very grateful. Steve and I think that by allowing him to come to our bed whenever he needed to gave him some rest (for one thing) and a strong sense of security. I can't tell you what a blessing it was to wake up this morning almost refreshed!

Tonight Steve and I are going out with our friends for sushi. Joy will stay with the kids and we are ready for a night off. This has been a hard week for us and next week does not look much better. Alex's 2nd MRI is scheduled for Wednesday and I really don't know how to prepare him for it. I'm hoping Steve will be able to come with us this time to offer his support.

I hope you all have a wonderful weekend. God bless!

G

Thursday August 10th

Well today started off pretty well. Alex was in good (not great) spirits this morning even though it was "chemo day". Today was a vincristine only day. Which means Alex forgoes the carboplatin which takes at least two hours to administer. Sounds like an easy day huh?

Well, last night during Alex's fettucini alfredo dinner, we noticed (hard not to) that he was aspirating with almost every bite. He did not even finish his kid size portion! When the nurse found out about this she seemed very concerned. She asked if this was new. At the first meeting we had with Dr. Handler, he heard Alex clear his throat while drinking. Later, it was explained to us that liquids were difficult because they did not have any weight to them. Solids were not a problem and we were encouraged to get a thickening agent for Alex's milk and water consumption. I never did this because we just changed his flow valve on this sippy cups from fast to slow and he did much better. That is until yesterday when he had such a hard time eating.

This could explain why he has not had an appetite lately. Anyway, the nurse said symptoms should not be getting worse and that most likely they would need an MRI to see if the tumor was changing. Which means growing to me! This whole ordeal began at TCH with a MRI. I know that is where Alex's trauma began and the thought of putting him through that so soon kills me. Not to mention the thought that the tumor is growing and causing more problems! The nurse also said that they may want to put a G-tube down his nose to his stomach to get nourishment to him or even put a tube in his side for the same purpose. Neither of these options sounds good to me! I want my boy to eat. Eat like he used to eat. I remember being in awe of his appetite at times. We never worried about Alex not getting enough nutrition. He's always been a good eater, even though it goes in phases like most kids. He'd eat well for a week then kinda taper off the next and so on and so forth.

My prayer now is that this new symptom of aspirating on solids is not because of the tumor. I just don't know enough to know what else it could be. Alex's doctor, Dr. Foreman, is visiting family in Britain and is scheduled to return next week. With the events of today, I pray that he makes it home safe and sound. In the meantime, the nurse ordered the MRI and a speech evaluation which will decide on a swallow evaluation. The nurse thinks speech therapy will help Alex eat easier. We are more than willing to give it a try.

I'm really trying hard not to get upset about this new development, but I think it's too late. My mind is reeling and my heart is heavy. To top it off, I have been called back for a second mammogram. The appointment confirmation call said to plan to be there an hour and a half to two hours. The first one took thirty minutes and this is kinda freaking me out. The only saving grace here is that my mom and good friend, Jane, told me to expect a call back due to the fact that this is my first mammogram and the size factor. So I'm doing my best to just be calm and not worry. What good would it do anyway? I still believe in that loving and MERCIFUL God!!!

And just in case that was not enough, tomorrow is Alex and Zoe's last school day. They will return next Monday and Tuesday for childcare during the school's in-service week, but tomorrow is the last day each child will be with the friends they have known their entire lives. I plan to bring a large cake to celebrate the occasion but I will be very sad to pack up their things tomorrow. This school means so much to me. I absolutely adore the staff, the parents and the kids are incredible! The community support has been overwhelming and I hope that Zoe will return when this is all over, but for the time being she'll just have to put up with me during the days. Poor girl!

If anyone is interested in starting a babysitting coop with me, I'd love to hear from you. I still need to go to work at least half a day a week and it would be nice to have Zoe with someone while we are at chemo on Thursdays. The chemo room is no place for a 15 month old.

Okay, well I must say, my plate is full. Another "chemo mom", Kathy, told me today to do anything I can to "not take on one more thing". Those words are wise and I'm trying but it is nearly impossible at this time of transition. Maybe someday soon, we'll get used to this new life.

One thing I've done to make life easier is to sign up for my first dream dinners session. Steve and I picked out 6 recipes and the idea is that you go and assemble the meal from prepared ingredients, box it up and freeze it at home. If this works out, then my grocery shopping, cleaning and meal planning will all be drastically reduced. My first session is next Wednesday night and I'm excited just to get out of the house, do something without kids and be around other adults.

Okay, well that is the post for today. Please don't stop sending those comments and prayers our way. We need each and everyone of you!

God Bless.
G

Tuesday, August 8th

Okay, I did it! I'm a lousy mom! I broke down and bought JUNK FOOD!! All kinds of junk food too! Chips, cookies, brownies, muffins, anything with SpongeBob on it made it in the cart! I completely freaked out yesterday morning when Alex did not eat his waffles. Not one bite! I noticed during his bath Sunday that his ribs were showing and his legs and feet look so much smaller than they used to. Despite my size, I have always been proud that we don't keep junk food in the house. I buy pita chips for crunch and bake cookies every once in a while (there have been quite a few "whiles" lately though). The kids don't drink juice, just milk and water. Alex now gets a root beer a day though. I don't really know if this is a good strategy, but when I tell the doctors he's losing weight, they say "give him anything he wants". That just makes me cringe, because Alex wants McDonald's Happy Meals every day. Not for the food but for the prize inside. The fries are just a bonus! He never eats the burger but Zoe can woof one down PDQ!!

Along with all of this junk food I bought a lot of fruit. Everything looked so good! Pink lady apples were in and if you have not tried one you gotta get one and you'll love it, I promise. I bought grapes, plums, peaches, bananas, apples, and pluots. Alex used to devour pluots. My plan is to offer the junk food after he's eaten his "rainbow" foods. It worked last night so we'll see. I have just got to get this kid to eat.

Besides not eating, Alex is very cranky these days. Go figure! He sleeps well when he's in our bed with us. I'm more rested but could always take a nap. Zoe is incredible. She just loves to walk and talk and talk and scream! She and I are really getting to know one another more since we are able to spend more time together. She has an incredible sense of humor. Alex does too and she can often bring him out of a funk with a good "phwattt".

Well that's about it. Life marches on and so do we. Hope you all are well. Take care and God bless.

G

Saturday, August 5th

What a difference a poop makes!!! I never thought a BM could bring such joy. Finally after 5 day of laxatives and stool softeners, nature had its way. Alex was so pleased. He's a completely different kid now. He's not nearly as tired and a lot more fun to be around. I guess we'll have to keep up the medicines to prevent this from happening again.

Besides that the only new thing is that we are researching counselors for Alex. Steve and I truly believe his restless nights are due to the trauma of surgery and everything else that has happened since. Our pediatrician recommends that the therapist be located outside of the hospital and we agree. I have a few names and will hopefully get Alex an appointment soon. In the meantime, we have just let Alex sleep with us. He still has a few night terrors in our bed but at least there is more sleep for Steve and me.

Ok, well laundry beckons! God Bless.

G

Wednesday, August 2nd

Well, it's official! The sleep deprivation has deteriorated my mind. This is not Alex's last week at his school; a week from Friday will be, August 11th. I'm completely a week ahead of myself. I've been telling all the teachers that Friday is Alex's last day. I'm just glad I did figured this out before I showed up at school with cupcakes Friday!

I called Alex's new school to update his health record. They want the school nurse to evaluate Alex before school starts. Only hitch is, they don't know who the school nurse is or when he/she will be at the school. So we are in a holding pattern there.

Alex had an audiology appointment yesterday. The audiologist was very good and thorough. She found some interesting things with Alex's hearing. It seems that while both ears are physiologically fine and functioning his "hearing perception" on the right side is diminished below 65 decibels. I interpret that to mean his brain is not perceiving the sound his ears hear. This is very uncommon, but follows with his diagnosis. Alex could wear a hearing aid but instead I think we'll wait and see what has occurred after six months of chemo treatments (which may cause hearing loss). The audiologist agreed with this plan and also recommended that Alex have his speech and language evaluated. I'm pretty sure he'll need speech therapy. Alex's sweet, soft voice is the result of partial facial and vocal cord paralysis.

While we were walking to the car after the audiology appointment, Alex complained that his stomach hurt. He complained about his tummy the day before too, so I pushed on this stomach a few places and asked him if that hurt. He said "yes, a lot". So I called oncology and we went to see a nurse. She diagnosed Alex to be constipated and prescribed a stool softener. It seems that this is a common side effect of the chemo. As of this writing we are still waiting for things to pass, so to speak.

Well, it is late and bedtime. I asked Alex today, why he cries at night. He said, "Because I'm scared". When I asked him what he was scared of, he said, "that I need company". In the wee hours of the morn, Alex usually ends up in our bed between Steve and I. I'm too tired to fight the fight by this time and Steve just grunts and rolls over to make way. Alex seems to sleep very well in our bed; unfortunately, Steve and I don't sleep well with Alex in the bed. We are considering many options at this time to resolve this. When we do get past these night terrors, I think I'll write a book!!

Lastly,I returned to work today. I was anxious about my return but it went very well. Everyone was very kind and encouraging. My job responsibilities have changed so that I can handle them in a few hours a week. This is a blessing for our family. It has put a strain on my employer and my coworkers and I am so very grateful for everyone's willingness to make this happen. I am so blessed to be offered such flexibility.

Many blessings have come from this situation. We have learned about compassion, community, hope and significance. I pray that everyone's kindness (at work, home, blog community and school) is reciprocated threefold. Good night and God bless.

G

Monday, July 31st

Okay, does someone want to tell me where July went? Time flies when you are a stress case!! Well as Steve would say "the beat goes on". Anyway, the cancer camp had it's high and low points. Alex's balance is off and he did not like the gravel terrain, so he wanted to be carried everywhere. That gets old after a while, especially when the request is accompanied by a temper tantrum of sorts. The high points consisted of Alex eating marshmallows until his tummy hurt, meeting families with similar circumstances, cool weather, no bugs and the absolutely beautiful scenery!! This camp at Eagle Lake is the nicest I have ever visited. Our cabin was right off the lake edge. Steve played some disc golf while Alex, Zoe and I played on the beach. Saturday night we played 20 questions with our Q20 game by lantern light in the cabin. We had a lot of fun letting Alex answer the questions. His standard response became "sommmetimes". It was good for everyone to get away for a while. We left early Sunday morning, had breakfast at Village Inn and headed home. Steve has a very busy week ahead and needed to get a head start and Alex was ready to go as well.

Steve and I think we have figured something out about Alex and his moods. It would seem that on the third day following chemo Alex's mood takes a dive toward sadness, weariness and outright crankiness. I hope now that we can predict the situation, we'll be better able to handle the consequences. One can only hope!

Also, we realized this morning that this is Alex's last week at his school. Alex has been a student there since he was four months old. Alex is leaving because he won a lottery spot into our neighborhood DPS school which is also a Montessori, dual language school. His best friend, Esther, will be in his class and Alex is excited to start class at the end of August. We are sad to leave Alex's classmates, but he'll still be around to help me pick up Zoe (hopefully, if we can swing it financially).

My boss has made me an offer I can not refuse. I'll be on the job once a week until we are done with chemo. I do work for the best company in Denver!!! This will allow me to keep in touch with the workplace and take care of the kids while getting Alex all the therapy he needs. I am so grateful to everyone at work since this will definitely change things up a bit. I am looking forward to starting my new schedule this week. Thanks everyone!!! You are the BEST!!

Well I have a list of calls to make. I have just got to figure something out with Alex's sleep. He is so very restless at night and the night terrors are not diminishing. Sleep is such a luxury nowadays! I try to get up during the night so Steve can be rested but I also know this deprivation can not continue for much longer. Hopefully, naps will become part of the new routine!

I hope everyone is staying cool. My hometown, OKC, was on NPR this morning. They have had 17 days of triple digit temperatures with no relief in sight. I knew there was a reason I left Oklahoma! Even though the kind, generous souls there are unmatched anywhere else on earth.


More later, have a great day and God bless.

G

Friday, July 28th

I woke up this morning more rested than I have been in a long while. Alex was in the bed and Steve was gone. I vaguely recall Alex tapping me on the shoulder asking if he could sleep in the big bed. I do recall being up with him twice in 15 minutes after turning off the light at 11pm and being very frustrated. Then I think the weariness hit and knocked me out. Until just a few minutes ago, I thought Alex had slept through the night (mostly). That is until Steve told me he had been up with him at least two times. Oh well, at least one of us got some rest. =0)

Alex had a pretty good day yesterday. He expressed some anxiety when the butterfly showed up but after that was a real trooper. Our nurse, Vicki, even gave him a new Candy Land game.

Chemo started nearly an hour late so the neurosurgeon, Dr. Handler, came to the infusion room to check out Alex. He said everything is fine and we should see him in 3 months. Good news!!

Alex and I ate at the Red Wagon Grill at Children's after chemo then picked up Zoe from school. I had a whole 20 minutes at home before I had to leave for my appointment. Alex's mood was very good yesterday until he got tired and had to go to bed. He did not eat any dinner either. I think that will be the norm for a while at least.

I just wanted to update everyone. I know the positive energy you all send Alex on Thursdays really helps him.

God Bless and have a great weekend!
G

Wednesday July 26th

I'd like to start this post with a thank you to you all. Your comments, cards and thoughtful conversations are a Godsend to our family. I don't know how to explain how much it helps to know that others are out there, experiencing this with us and holding us in their prayers and good thoughts. Thanks just does not seem like a big enough word here, but Thanks nonetheless!!

Yesterday and today have been good days for Alex. He has seemed to really enjoy his return to school and just lights up when he is around his friends. The Primary students at MAC had a field trip to the Nature and Science Museum's Planeterium. Everyone who saw me in the lobby told me how much fun Alex had playing in the fountain. It was great to hear that he did so well without Mom or Dad around. I had planned to go but the date was moved due to electrical blackouts at the museum last week and I already had a doctor's appointment set for today.

Steve's great friend, Rick Harper, is in town on business and stopped by last night for dinner and to catch up. I have not seen Rick since he was in our wedding. I must say he was a sight for sore eyes! We ordered in Indian food and sat on the front porch just talking about life - future, past and present. It was like we'd been neighbors for the last five years. I must say we are blessed with great friends. You know who you are!!

Tomorrow is chemo #3 and Alex is asking about the pokes. We told him that there will be no pokes just the "butterfly" and magic cream. The "butterfly is the needle they put into the mediport. The magic cream numbs the area so he does not feel the poke, just a little butterfy bite.

After chemo tomorrow we have an appointment with Dr. Handler. It will be 30 days since surgery (time flies) and this was scheduled when we left the hospital. I completely forgot about it, thank Goodness they call with reminders! Then I have my first mammogram at 4p. I normally would be quite worked up about this but have not had the time or energy to work myself up so I'll just go and hope for the best. Just for the record I do believe in a merciful, loving God!

We have signed up to attend a Cancer Camp at Eagle Lake this weekend. It is usually a church camp, so I hope the bible beating won't be deafening. Alex has wanted to go camping for quite a while and I think we can handle one night under the stars! There are lots of activities for kids and it will be good to get into them thar hills for a while! I can't wait to do some star gazing. Alex wants us to pack marshmallows!!!

Well sleep has still been elusive the last two nights. I told someone today I think I'm just getting used to it. I deplore all the things we have to get used to now; but everyday seems to get a tad easier than the last. I have started working out every other day just so I don't explode with stress. Hooray for endorphines!!

I hope everyone reading this is blessed with a wonderful weekend and hugs and kisses from a loved one!

God Bless.
G

Tuesday, July 25th

Since the last post, Alex went to the Zoo and did not have a good time. He's just not the same happy-go-lucky kid anymore. I hope happy Alex returns soon though. Zoe has had fevers over 102 degrees, peaking yesterday at 104. Alex complained his arm was hurting and I noticed some swelling in his right forearm, so I called the hospital. They wanted to see him because the mediport may have been causing the swelling. Dr. Foreman checked Alex out himself and said it was not the mediport and perhaps a side effect of chemo treatments. He also said that we'd be in the hospital alot for a while (indicated months!!) until this became more familiar. I can't tell you how unnerving that statement was for me.

Alex has his first physical therapy appointment today. We are hoping it will be productive and fun at the same time.

Zoe is doing better today. Hopefully, she will return to school tomorrow.

Have a great day!
G

Sunday July 23rd

Daddy's home!!! Well, Friday is a blur. Steve was home but had conference calls through the late afternoon. We all went out for Alex's favorite meal at Macaroni Grill. He just loves the cheese graters there!

Saturday we took both kids to the pediatrician. Zoe had a high fever during the night and Alex coughed and choked all night. The doctor said they both have the same viral infection and to call her if Alex has a fever. Zoe is quite miserable. She is also teething and dealing with a runny nose that is now raw from wiping. Alex seems to be doing better though. We gave him some Night Rest PediaCare last night. Yesterday we also bought Alex a Spiderman Ready Bed. It is an inflatable bed/sleeping bag. We put it in our room and told him if he woke up and wanted to come to our room it would be there for him. He ended up in it some time after midnight and rested well until morning! Can you say Hallelujah!! For the first morning in a while I did not wake up tired. I still could use a nap though to restore my sleep bank reserves.

Well, we had hoped to go to the Denver Zoo today, but Zoe is still running a very high temp even after meds. So it looks like Alex will be getting some "daddy and Alex time" today. I'm okay with that since there is laundry and many other chores to do here at home. Oh yah, and that nap! =0)

I am supposed to return to work tomorrow but most likely won't be able to make it. Steve is facing approaching deadlines on his projects and since Zoe still has a fever, she can not go to school, therefore I will need to be with her. I know I need to get back into a routine. It is just so hard to get used to the "new normal".

Love to you all.

G

Thursday July 20th

Well after much ado, I reverted the settings so that anyone can comment on this blog. You just have to go through a word verification. I apologize if this was a huge inconvenience for anyone.

Last night had to be one of the worst nights since diagnosis. I believe Alex was retraumatized by the cat scan therefore did not sleep well. It took him a while to get to sleep then he started the crying, kicking, etc. right as I was headed to bed. All of this commotion woke Zoe up so I got to bed (with Alex by my side) at midnight. Alex proceeded to kick and cry all night. It was brutal. I woke up more tired than when I went to sleep and I think Alex did too.

Nonetheless, we got to the hospital on time. The Chemo Room was very busy and we did not get the private room we had last week. We were given the choice of large recliners in one of the Avalanche Room's corners. We picked one that seemed pretty secluded, but I found out later was very deceiving. Anyway, I had to combat some claustrophobia, crankiness and weariness to get through the first hour (as did Alex). After that though, we finally got settled in and got through Alex's second round of chemo. Alex did very well but still does not like the pokes.

The doctor today did not offer much to get Alex to sleep any better. Seems this is very common for kids after diagnosis, surgery and chemo treatments. We were urged to get into a good routine and stick to it. I also want to pursue other relaxation methods for Alex. Perhaps massage, biofeedback or acupressure will help him get some much-needed rest. (Jerry, I can hear your Boulder jokes now!) I am leery of trying meds at this point. His poor system is already going through so much.

Alex can't wait for Steve to be home. He wants to know what kind of toy he picked out for him! Alex had a good evening, Karlyn Vasan dropped by with dinner and her sons. Alex really perked up when Vikram came in. We hope to have a real play date with them soon. Joy was also here this evening and helped out with laundry and the kids. Our friend Nadine also came by and we drank some beer and ate Karlyn's wonderful Mexican Chicken dinner while the kids devoured Super Sponge Bob Mac 'N Cheese! After dinner was bath time and then bed. Alex talked and sang to himself for an hour or so and has just fallen asleep. While writing this he has screamed twice and needed consoling. It looks like another restless night.

If anyone has any ideas that would help Alex sleep, please let me know. I'm willing to try almost anything. I am going crazy though so don't take advantage of my impaired state of mind!

Thank you for your comments. I really enjoy reading them and always feel renewed for another day.

Sweet dreams!
G

Wednesday July 19th

Ok, well I just figured out that the last blog has the wrong weekday in the title. Sorry if I confused anyone. Also, since I just received 188 spam emails, I have changed the settings so you have to be a registered user to post a comment. Please don't let this hinder you from leaving comments. That would totally defeat the purpose. It is just sad that some people use blogs like this as a marketing tool. Oh well, I figure their lives are shallow and void of meaningful relationships so they must have no clue! Okay, I'm off my soap box.

Today started off okay and ended okay but took an interesting turn at midday. Alex woke up in a very sad, upset mood. He kept saying "Mommie, I miss my Daddy" over and over again. We got to school and he seemed to be okay when I left. I spent the morning working on several different projects and got to Alex's school in time to catch a prime parking spot in the shade. I was in the lobby when Alex's class began to walk by to go outside. As soon as he saw me, he started getting tearful and asking for his father again. We then went to pick up Zoe and spent a few minutes in her room playing ball with her. When we left, we made a stop at my office and then headed home. Alex started crying in the car and complained that his head hurt. As soon as we walked in the door, both kids started crying. Our neighbor, Heather, was at the door to watch Zoe as Alex and I went to Children's for his physical therapy. Heather came in and Zoe got a clue that I was leaving and cried even louder. Alex was crying for medicine that I could not get to him soon enough. So I gave Zoe to Heather, got Alex his Ibuprofen and two seconds later, he starts throwing up.

Okay, so when we left the hospital they said if Alex has nausea and/or headaches I should call. So in addition to both of these symptoms, I had noticed at the school that his incision was raised and swollen more than usual. So I got Alex's shirt changed, showed Heather where the diapers were and headed to Children's. On the way, I called our nurse in Neurooncology but she was not available, so I called neurosurgery. By this time, we were in the PT clinic waiting for our therapist. Jane Freeman in neurosurgery had examined Alex a week ago and said we could come down and she'd look at the incision. So we met the PT therapist and headed to the 3rd floor. Jane looked at Alex and after some discussion with me then Dr. Handler decided that Alex should have a catscan. Aughh!!

So we head down to the first floor to radiology (where this all began, and my least favorite department) and waited. Alex and I went to get a root beer and snack. His appetite has been poor all day, so I thought I would keep offering different snacks. Anyway, after a significant wait, we were called back. Alex immediately started getting anxious. (Who could blame him?) We got to the catscan room and he really did not want to lay down on the table. Finally, after much coaxing, he was positioned in the machine. I was able to hold his hand the whole time and he actually did very well. He wanted to cry but when I told him that crying would only make it last longer, he was able to compose himself. What a great kid!!

So back to the third floor. Jane called us back to look at the scan and pointed out that some spinal fluid has accumulated on the incision. She also stated that this is normal since he is more active and upright and not of much concern. So we were sent home.

Alex immediately took a nap and Zoe and I shared some time together. We missed out on our dinner with our friends and Alex asked me at 9p why we did not go play with Samantha. Hopefully, we'll make that play date soon.

While we were leaving radiology there was a young couple who obviously had just received very bad news. The mother was holding her baby so close and her eyes were so red from crying it broke my heart. I just wanted to make it all go away for them. Being at the hospital and seeing things like this and very sick children really affects you deeply. I am learning how to deal with being helpless. When Alex cries in the middle of the night and is inconsolable, I'm helpless. When he asks for "no more pokes', I'm helpless. When he can't walk, talk, drink like other three year olds, I'm helpless. It is a very difficult situation to get used to, especially for such a control freak like me! I'm sure it will get easier, but is that a good thing? I guess we'll find out.

So tomorrow is chemo round number two. Whoo Hoo! I'm dreading it. I try to focus on the positives, like the shared one-on-one time with Alex, but that is not really how or where a parent wants to spend "quality" time. The good thing is that Steve will return from his trip tomorrow!! I'm trying to think of some fun activities for us to do this weekend as a family, but maybe just being home and getting some rest is what everyone needs now. We'll see. I must say I have become much more spontaneous in the last month. No time like the present!!!

Ok, please let me know if being registered to leave a comment is a hassle. Thank you all for your continued support. It means alot to us all.

Good night and God bless.

G

Tuesday July 18th

Well it is 10:15pm and I should be heading for bed, but I just had to get this down. Alex has been in bed since 8p and he just called me back to the nursery to ask me to be sure to add SpongeBob Squarepants Super Mac 'n Cheese to our grocery list. It probably loses something in the translation, but it made my heart sing! Yes, I wish he were asleep, but at least he is not crying in terror, and he is showing interest in food again!

I actually had a very productive day. I got a work out in and several "to do's" off my list. Joy came by for a few hours this evening to help out with dinner and bath night. I met her when she was an assistant in Zoe's classroom and can't rave about her enough. I feel so comfortable with her and she is great with the kids. It seems like she's been with us for years. It was very nice to have some help this evening too. When she came in Zoe became very upset. I am pretty sure she thought I would be leaving and therefore demanded to be held for the next 30 to 40 minutes. She finally relaxed and was soon playing with Joy as Alex and I made chocolate chip cookies together. We love to bake together and it gives him an opportunity to practice his manual dexterity. Then we had a wonderful meal and more play time then baths. Alex was reluctant (putting it nicely) to get in the bath and then did not want to get out. Zoe was exhausted and fell asleep as soon as she was put down.

The Benadryl did absolutely nothing for Alex last night and I did not give it to him this evening. I truly believe his mind is struggling to reconcile all that has occurred in the past month. I know I would be terrified if it were me. I can't imagine how a mind of three and a half years processes this. All I know is that we are doing everything we can to assure him he is safe and loved and will be okay. It is hard sometimes though. I have wanted to just cry with him on more than one occassion.

Well, as that last paragraph indicates, I have been advised to get some counseling. My doctor is researching some candidates and I hope to hear from her soon. I really just don't know when I will have time to visit with a therapist. I guess it will all work out somehow.

While Steve is gone, we are doing our best to keep busy. We have dinner plans with some friends that have children tomorrow and also Alex's first physical therapy appointment in the afternoon. I can't wait to see him more stable on his feet and stronger with his right side. I have also made a audiology appointment for next month. The neurosurgeon said that while monitoring Alex's brain during surgery, they found his hearing diminished on the right side. I whispered in Alex's ear the other day and got no response. Perhaps he was just practicing for his teenage years by ignoring me?!

Alex told me tonight that he does not want to go back to the doctor's. It will be difficult for a while to get him into a routine, but I know it will happen. I remember when we went to Children's Hospital for the first time to get the MRI. I told Nadine then "I really don't want to get to know this place". Well, I'm sure I will be able to give tours and put names to many faces by the time this is all over. What am I saying, it will never be over. I still have not come to terms with the permancy of this situation. Alex will have to have MRI's for the rest of his life. After this tumor is dealt with he has a 50 / 50 chance of reoccurence. So the sooner I get used to it the better, huh?

Well, this posting seems to have taken a different turn than what I intended. I think it has become a journal as much as a means of communication. I hope I don't regret that anytime in the future. I just feel better letting everyone know what this really looks, feels, tastes and smells like. It helps me feel like I am dealing with it. So let's return to the positive. Alex wants SpongeBob Squarepants Super Mac 'n Cheese!! Isn't that just the best?!

Gwendolyn