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