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
Thursday, September 28, 2006
Sunday, September 24, 2006
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
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 16, 2006
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 12, 2006
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
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 09, 2006
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
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 06, 2006
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
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 01, 2006
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
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
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