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
Sunday, October 22, 2006
Monday, October 16, 2006
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
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 12, 2006
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
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 10, 2006
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
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 07, 2006
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
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 05, 2006
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
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 01, 2006
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
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
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