DADDY'S HOME!!! YEAH!!!
Besides that, Alex has done a beautiful job this week. He looks good and is very good about taking his quiet time. We have had some looooooong quiet times lately. Steve came home yesterday and after lunch, we all had naps. His was quite long and mine was not short! I guess we are more tired than either of us thought.
It has been great having Linda around. Yesterday, she and I went to Hobby Lobby and bought yarn and knitting needles. She is going to teach me how to knit. We had our first lesson last night. I began strong but my technique soon dwindled. I hope to try again after a good nap.
So far Alex's counts have been very good and he is now down to 1mg of steroid (began at 6mg). He's doing very well off the steroids. He has started walking around the house without his super boot. His appetite is good. The front door can be open and the sunshine does not make him scream. His drool is gone and his voice sounds stronger each day. So far I would have to say that his symptoms have not reappeared!!! I can't express how hopeful this makes me feel. Gotta stay positive!!
At a local garage sale this weekend, I bought a "prayer bracelet". It has a little round cylinder with a lid. On a small piece of paper I wrote, "May Alex and Zoe live long, happy, healthy lives." So far the prayer paper has disappeared twice. I just keep rewriting it and replacing it. This last time I superglued the thing shut!!! I figure I will always have this prayer in my heart. Usually I don't enjoy bracelets and have never worn them. For some reason, this one feels right on my arm. I am really enjoying it.
Well, believe it or not, Zoe Grace turns two in just a few days. We have been preparing for her party at a local Gymboree. I can't believe she is two years old. She is such a joy in our lives. I know she will have a wonderful party with all of her friends and lots of stuff to run, jump and play on!
Okay, back to knitting! Wish me luck!
God bless and make it a great day!
Thursday, April 26, 2007
Monday, April 23, 2007
Monday, April 23rd
Good Morning. The weekend is over and we start week 3 (of 6). Friday we picked up None and had dinner at Mac Grill. Steve and some buds went to an arena football game on behalf of the Starlight Starbright Foundation. Alex did not feel like going. Saturday was a tad stressful. Steve had a headache most of the day and was pretty miserable (to be around). For some reason, we just kept irking each other to no end. By bed time we had a talk and ended up laughing. Supposedly only 25% of couples survive life events like what we are going through. Luckily, we don't buy into statistics!!
Sunday, Steve flew to Florida for a training session. We added a new "responsibility" to Alex's chart. To go for a walk every day, no matter how many stops or how short. Alex really did not seem to be enjoying the walk yesterday, but when I asked him if he wanted to stop and go home or continue, he always said continue. This amazed both Linda and me! What a kid! What keeps him going, where does this inner strength come from? Would you or I continue doing something that was so scary? I bet not.
Alex also only had one noodle meal yesterday. He ate some new foods and is really expanding his selections. This makes me very happy. Zoe too!
I wanted to tell you all about the imagery work we are doing with Alex. In Florida, we got a sword that makes "sword sounds". Sometimes we take it with us into the radiation clinic to help "fight the bump". You should see the looks we get when this thing starts singing! Also, Alex has discovered Teenage Mutant Ninja Turtles. Normally I would not let Alex watch a show with fighting, but I told him he can watch it to see what it looks like to fight and win! Just like he is fighting the bumps!
Yesterday, Alex asked "Mom, why do I fight the bump?" I said, "Because the bump has weakened your right arm, leg and face." I wanted to say more but stopped myself. Then I asked him why he thought we fight the bump. He said "I don't know". I plan to follow up on this and will keep you posted. I'm very interested to hear his answer.
Okay, well Alex is in radiation and should almost be done. I want to thank all of the families that donated the prepared meals. This will be a huge help and we are most appreciated. Thank you very much!
God bless and make it a great day!
G
Sunday, Steve flew to Florida for a training session. We added a new "responsibility" to Alex's chart. To go for a walk every day, no matter how many stops or how short. Alex really did not seem to be enjoying the walk yesterday, but when I asked him if he wanted to stop and go home or continue, he always said continue. This amazed both Linda and me! What a kid! What keeps him going, where does this inner strength come from? Would you or I continue doing something that was so scary? I bet not.
Alex also only had one noodle meal yesterday. He ate some new foods and is really expanding his selections. This makes me very happy. Zoe too!
I wanted to tell you all about the imagery work we are doing with Alex. In Florida, we got a sword that makes "sword sounds". Sometimes we take it with us into the radiation clinic to help "fight the bump". You should see the looks we get when this thing starts singing! Also, Alex has discovered Teenage Mutant Ninja Turtles. Normally I would not let Alex watch a show with fighting, but I told him he can watch it to see what it looks like to fight and win! Just like he is fighting the bumps!
Yesterday, Alex asked "Mom, why do I fight the bump?" I said, "Because the bump has weakened your right arm, leg and face." I wanted to say more but stopped myself. Then I asked him why he thought we fight the bump. He said "I don't know". I plan to follow up on this and will keep you posted. I'm very interested to hear his answer.
Okay, well Alex is in radiation and should almost be done. I want to thank all of the families that donated the prepared meals. This will be a huge help and we are most appreciated. Thank you very much!
God bless and make it a great day!
G
Thursday, April 19, 2007
Thursday, April 19th pt. 2
I ran out of time earlier, but wanted to say that this is the 12 year anniversary of the Oklahoma City Bombing. The anniversary of the day I lost my innocence and belief that the world was good and safe. It makes me so very sad to remember this day every year. Even worse to realize that the world's innocent still suffer at the hands of evil every day. While you are praying, please take a moment and pray for peace. Peace in the hearts and minds of all mankind.
God bless.
G
God bless.
G
Thursday, April 19th
First of all, let me say that Alex has had much better days since Monday. We have some ideas as to what upset him so. Perhaps it was the new faces of the "fellow" that he met that morning. Or it could have been that it took 20 minutes to do the blood draw/blood gases from his new line. Or perhaps he was hungry and tired. We know his pulse/ox was low and that never helps anyone be in a good mood. Today, we go back to the hospital for a clinic visit. I plan to ask that no new persons see Alex and that the he not be asked to wait for anything! Hopefully, this will help him.
Well, even though the days have been better, the nights have been horrible for me. I have had some awful nightmares all very much related to our present day life. I won't tell any details here, they are just too awful. But sleep is not my friend right now and power naps have been my blessing!
So Alex is in radiation as I type. I found this computer in the lobby and decided to update the blog. This evening we have a girls' night or rather "Dazzling Dames" night. I have not decided if I want to go for Ethiopian, French Vietnamese or Mexican tonight, but no matter what it will be good to get together with friends.
Okay, gotta get. Please keep those wonderful comments coming. They really help keep us going.
Steve's mom arrives tomorrow and everyone is very excited to see her.
Make it a great day!
God bless.
G
Well, even though the days have been better, the nights have been horrible for me. I have had some awful nightmares all very much related to our present day life. I won't tell any details here, they are just too awful. But sleep is not my friend right now and power naps have been my blessing!
So Alex is in radiation as I type. I found this computer in the lobby and decided to update the blog. This evening we have a girls' night or rather "Dazzling Dames" night. I have not decided if I want to go for Ethiopian, French Vietnamese or Mexican tonight, but no matter what it will be good to get together with friends.
Okay, gotta get. Please keep those wonderful comments coming. They really help keep us going.
Steve's mom arrives tomorrow and everyone is very excited to see her.
Make it a great day!
God bless.
G
Monday, April 16, 2007
Monday, April 6th
Well, despite two nose bleeds, the weekend was pretty good. We spent Saturday in Erie with friends that have kids. Alex did pretty well. Sunday was nice and relaxing as well. Alex ate well, was in good spirits, took his oxygen and had a good time at Mac Grill with the Erie family. Steve got to get out and enjoy some down time with a neighbor. I felt pretty rested and just enjoyed doing nothing, nada, zip!
Then came today. Alex had expressed some worry about the treatments yesterday. I told him not to waste a beautiful day worrying and to make it a good day. He said "okay, mommie". Even this morning he seemed okay. He asked if he could just go to the new hospital but not get treatments. We told him "no, treatments are the only reason we are going to the new hospital now". So off he and Steve went. I know he had a hard time waking up and was not completely awake when he arrived at TCH for his clinic appointment. They gave him some oxygen, took his counts (very good) and blood gases (took over 20 minutes to get these and three tries). Well, I guess the combination of chemo, radiation, starvation and frustrating labs took its toll on Alex. In the waiting room at TCH he lost it. Steve said he screamed, cried and was just miserable for a good thirty minutes. He was yelling "I can't do this anymore; I want to get out of here!" After thirty minutes Steve got him calmed down but a nurse asking if Alex needed anything started the whole thing over again. Steve left without the lab results and when he came home Alex was very distraught and just laid in his bed. Steve said he knew something was wrong when he did not want to eat after radiation.
Well, Steve had lunch then left. Zoe and I were up when Alex woke screaming and crying. I got him in the dining room because he said he was hungry and wanted waffles. Well, when the waffles arrived he could not eat them. He was crying and screaming, saying "I'm so dizzy, my head hurts!" I could tell he was having trouble swallowing so I asked him if it hurt to swallow. He said "yes". Then I spent the next 15 minutes trying to get some Tylenol in him. He kept asking "are you sure this will help?" Eventually I had to squirt the medicine in his mouth. That did not help at all, so I called the doc and was told to give IB. They also said that this week would be a very hard one since we are walking a fine line between the steroids and his symptoms. They have decreased his steroids again and I am quite anxious about the effects. Remember Alex would not eat or drink because he could not swallow well?
Well, for the good side. Alex's weight is up to over 19 kg. That is good and bad. He can't gain any more weight or radiation will have to be postponed for another week or so to "refit" him to the machine. This could greatly effect everything. So we are back to 2% milk and wholesome snacks. So far Alex is doing well.
Anyway, his pain went away and by 4p he was ready to color and have friends over. The neighbors came over and it was great to see Alex doing sooo much better. He did a complete 180 from this morning. He finally ate too.
Okay well that is it. Pray that the week is not as hard as they predict and that today is much easier for Alex.
God bless.
G
Then came today. Alex had expressed some worry about the treatments yesterday. I told him not to waste a beautiful day worrying and to make it a good day. He said "okay, mommie". Even this morning he seemed okay. He asked if he could just go to the new hospital but not get treatments. We told him "no, treatments are the only reason we are going to the new hospital now". So off he and Steve went. I know he had a hard time waking up and was not completely awake when he arrived at TCH for his clinic appointment. They gave him some oxygen, took his counts (very good) and blood gases (took over 20 minutes to get these and three tries). Well, I guess the combination of chemo, radiation, starvation and frustrating labs took its toll on Alex. In the waiting room at TCH he lost it. Steve said he screamed, cried and was just miserable for a good thirty minutes. He was yelling "I can't do this anymore; I want to get out of here!" After thirty minutes Steve got him calmed down but a nurse asking if Alex needed anything started the whole thing over again. Steve left without the lab results and when he came home Alex was very distraught and just laid in his bed. Steve said he knew something was wrong when he did not want to eat after radiation.
Well, Steve had lunch then left. Zoe and I were up when Alex woke screaming and crying. I got him in the dining room because he said he was hungry and wanted waffles. Well, when the waffles arrived he could not eat them. He was crying and screaming, saying "I'm so dizzy, my head hurts!" I could tell he was having trouble swallowing so I asked him if it hurt to swallow. He said "yes". Then I spent the next 15 minutes trying to get some Tylenol in him. He kept asking "are you sure this will help?" Eventually I had to squirt the medicine in his mouth. That did not help at all, so I called the doc and was told to give IB. They also said that this week would be a very hard one since we are walking a fine line between the steroids and his symptoms. They have decreased his steroids again and I am quite anxious about the effects. Remember Alex would not eat or drink because he could not swallow well?
Well, for the good side. Alex's weight is up to over 19 kg. That is good and bad. He can't gain any more weight or radiation will have to be postponed for another week or so to "refit" him to the machine. This could greatly effect everything. So we are back to 2% milk and wholesome snacks. So far Alex is doing well.
Anyway, his pain went away and by 4p he was ready to color and have friends over. The neighbors came over and it was great to see Alex doing sooo much better. He did a complete 180 from this morning. He finally ate too.
Okay well that is it. Pray that the week is not as hard as they predict and that today is much easier for Alex.
God bless.
G
Saturday, April 14, 2007
Saturday, April 14th
Good Morning. Well for the first time in a very long time I did not wake up exhausted. Yesterday I took two naps and was still so tired I had no energy to get anything off my "to-do" list. I still don't feel motivated but I can think. I was able to make it to my therapist's office yesterday. She offered a recommendation for Steve and me; that I thought I would share. She said that often couples in crisis will tear each other/relationship apart because each person is so needy and therefore incapable of meeting the other's needs. Makes sense! She offered the suggestion that we "alternate days" to take care of each other, knowing that our day will be the next one. She said "be the shoulder, give the massage" and stuff like that. So, today is Steve's day and we'll see how it goes. So far I have made breakfast and coffee and brought in the paper. Do you think that counts as a day's worth? =0)
So enough about the grown ups. Alex's radiation was cancelled yesterday, the machine broke! What the machine can break? Was it broken when Alex was in it? THis is NOT right!! I want absolute perfection, no broken machines allowed! But we were all very relieved not to have to get up early and go through the process of radiation. Alex was confused but he was okay with not going to the "new hospital". He's doing quite well. Wednesday was a very good day, Thursday was not and yesterday he ate all day long. When he went to bed he had a "buddha belly". I loved it! His cheeks are quite full now from the steroids but he does not seem to mind. Today he wants to go back to Erie to play with his friends up there. We are considering going out to lunch at Mac Grill, but we'll see.
So Thursday night (after a horrible day for the grown ups) Steve and I had a talk. He brought up the idea that perhaps Roxie is too much of a toll on us right now. I hate to give up on any member of the family. Seems like a bad precedent to set. So we decided to get her into some obedience classes and perhaps contact our neighbors that have offered to walk her and get a schedule going that works. I still don't know how we can handle obedience classes but as she gets bigger it is quite necessary. I asked Alex yesterday morning if he wanted Roxie to stay with us or live with another family that would love her. He said he wants her to stay "but she needs to be trained". Out of the mouths of babes! So we hope to make some calls today. Petsmart has a 6 week, every Saturday class but that seems too intermittent and drawn out. I would rather do so intensive training and get it over with quickly so that she is primed to continue training in the home. Seems like an easier solution. I have no idea though.
Okay, Alex wants me to sit with him. Hope your day is a good one!
God bless,
G
So enough about the grown ups. Alex's radiation was cancelled yesterday, the machine broke! What the machine can break? Was it broken when Alex was in it? THis is NOT right!! I want absolute perfection, no broken machines allowed! But we were all very relieved not to have to get up early and go through the process of radiation. Alex was confused but he was okay with not going to the "new hospital". He's doing quite well. Wednesday was a very good day, Thursday was not and yesterday he ate all day long. When he went to bed he had a "buddha belly". I loved it! His cheeks are quite full now from the steroids but he does not seem to mind. Today he wants to go back to Erie to play with his friends up there. We are considering going out to lunch at Mac Grill, but we'll see.
So Thursday night (after a horrible day for the grown ups) Steve and I had a talk. He brought up the idea that perhaps Roxie is too much of a toll on us right now. I hate to give up on any member of the family. Seems like a bad precedent to set. So we decided to get her into some obedience classes and perhaps contact our neighbors that have offered to walk her and get a schedule going that works. I still don't know how we can handle obedience classes but as she gets bigger it is quite necessary. I asked Alex yesterday morning if he wanted Roxie to stay with us or live with another family that would love her. He said he wants her to stay "but she needs to be trained". Out of the mouths of babes! So we hope to make some calls today. Petsmart has a 6 week, every Saturday class but that seems too intermittent and drawn out. I would rather do so intensive training and get it over with quickly so that she is primed to continue training in the home. Seems like an easier solution. I have no idea though.
Okay, Alex wants me to sit with him. Hope your day is a good one!
God bless,
G
Thursday, April 12, 2007
Thursday, April 12th
Good Morning. I have 5 minutes. Steve and Alex saw Dr. Foreman yesterday and he had done a lit search. There is one other documented case like Alex's. It involved a 20 year old male in Canada. It seems that he and Alex both have/had nonmalignant tumors clone themselves into malignant tumors. I guess that means it did not grow/expand rather it birthed a new one. That would be so interesting if it weren't our son we were talking about.
Alex did well yesterday. He has a play date this afternoon and Sunday. We are expecting 6-12 inches of snow tonight. This morning Alex keeps expressing how scared he is. I wish I knew how to handle it. At first, I told him not to be scared, then I said, "you know, this is scary stuff, it is okay to be scared". We truly have no idea how to handle this. Exhaustion is wearing in on everyone!
Okay, time up.
Make it a great day!
God Bless.
G
Alex did well yesterday. He has a play date this afternoon and Sunday. We are expecting 6-12 inches of snow tonight. This morning Alex keeps expressing how scared he is. I wish I knew how to handle it. At first, I told him not to be scared, then I said, "you know, this is scary stuff, it is okay to be scared". We truly have no idea how to handle this. Exhaustion is wearing in on everyone!
Okay, time up.
Make it a great day!
God Bless.
G
Tuesday, April 10, 2007
Tuesday, April 10th
Well miracles do happen. As bad as I felt after visiting with the doctor that is as good as I felt after spending time with Alex chatting on the couch last night. Alex slept alot yesterday and even after two naps wanted to go to bed at 6:22p. Of course, I told him he could go. I was so disappointed though. Steve had not made it home yet and Alex had not eaten his dinner nor taken his last dose of steroid for the day. Our neighbor from across the street (who's shoulder I cried on yesterday) called about 1ish and said that she was bringing dinner over later so not to worry about it. That was a huge relief so she and her kids came over and had a coloring party with Alex and Zoe. It was great to see him interacting with his friends and being his old self.
Anyway, Alex woke up at 7:10p and was hungry! So we made him some Alfredo noodles and carrots. He ate all of his carrots and two servings of noodles. Then we retired to the couch to watch "Cars". Steve took Roxie for a walk with Zoe in the piggyback backpack at about this same time. I did a bit of work to get ready for the housekeepers arrival this morning and then joined Alex. He started talking about how he does not want to watch as much TV anymore and would rather play or color or go on a picnic. When Steve and Zoe made it home he said "I'm sooo happy we are all together again". He apologized for being bad and I asked him what he meant because he has never been bad. He said something about the time he had cheeseburgers and fries behind the car. I have no clue what he was talking about. I told him that he has never been bad that we can be angry or sad or mad but that does not make us bad. I told him that he has always been a sweet, bright, happy, wonderful boy.He said "thank you mommie, I love you." We asked Alex who he wanted to take him to the new hospital tomorrow. I told him it was my turn but if he wanted Dad to take him that was okay too. He said "Oh yah, mom then we can have our special time together; I love our special time". There was more but it was all as heartwarming as that. My heart was filled and I would not have traded those precious moments for anything!
Before bed last night, Alex also asked if he could wear his oxygen to bed. This is huge since we have had the capabilities of giving him O2 since last Wednesday or so and this is the first time he has been agreeable toward the whole idea; never mind that he brought it up!
Well, chemo administration this morning went well. I had another nurse come out to the house just to make sure I did not mess things up. She said I did fine. Tomorrow I am on my own. I took Alex to Anshutz this morning and he had lots of questions about his appointments. I started taking pics of people that represent his different appointments. I hope to make a calendar very soon so he can see a week's plan at a time. Today, I took pics of Mr. Bill the front desk man at the radiation clinic and Kerry, Alex's physical therapist. Anyway, when they called me back to get Alex he was awake and talking to the nurse. She was smiling that enchanted smile only Alex can bring to one's face. I knew immediately he was going to be fine.
Today was also a fine day because the for the first time in my life professionals cleaned my house. It was so great! We left to have lunch with Steve and when I got home, the house was sparkling!!! WOW! Not much beats a clean house that took no exertion on your part. I hope I don't get to used to this special treatment. Thank you (you know who you are) for this wonderful gift. It is such a joy and relief to everyone in the house.
Alex actually has had a pretty good day. He wasn't filled with energy or anything at PT but he did well. He ate okay but drank 2.5 Spider milks today. His drool is gone and the nurse commented that his facial droop was also gone. (She saw Alex last Wednesday). The doc has reduced Alex's steroid dose from 6 to 4mg per day. They don't want his cheeks to get so big that his "mask" does not fit properly during radiation. I'm all for that as long as he continues to improve.
Well, Steve takes Alex tomorrow morning. I have a list of tasks to get done. Zoe had a play date today and came home exhausted but happy. She and Malena love their time together. I have received many offers for dinners and would ask that everyone give me some time to respond. I am so overwhelmed right now.
Okay, well I have to say thank you all for the prayers and positive energy. I feel better today and just keep thinking positively and trying my best to stay in the moment. We'll see how long that lasts!! =0)
Have a great day! God bless!
G
Anyway, Alex woke up at 7:10p and was hungry! So we made him some Alfredo noodles and carrots. He ate all of his carrots and two servings of noodles. Then we retired to the couch to watch "Cars". Steve took Roxie for a walk with Zoe in the piggyback backpack at about this same time. I did a bit of work to get ready for the housekeepers arrival this morning and then joined Alex. He started talking about how he does not want to watch as much TV anymore and would rather play or color or go on a picnic. When Steve and Zoe made it home he said "I'm sooo happy we are all together again". He apologized for being bad and I asked him what he meant because he has never been bad. He said something about the time he had cheeseburgers and fries behind the car. I have no clue what he was talking about. I told him that he has never been bad that we can be angry or sad or mad but that does not make us bad. I told him that he has always been a sweet, bright, happy, wonderful boy.He said "thank you mommie, I love you." We asked Alex who he wanted to take him to the new hospital tomorrow. I told him it was my turn but if he wanted Dad to take him that was okay too. He said "Oh yah, mom then we can have our special time together; I love our special time". There was more but it was all as heartwarming as that. My heart was filled and I would not have traded those precious moments for anything!
Before bed last night, Alex also asked if he could wear his oxygen to bed. This is huge since we have had the capabilities of giving him O2 since last Wednesday or so and this is the first time he has been agreeable toward the whole idea; never mind that he brought it up!
Well, chemo administration this morning went well. I had another nurse come out to the house just to make sure I did not mess things up. She said I did fine. Tomorrow I am on my own. I took Alex to Anshutz this morning and he had lots of questions about his appointments. I started taking pics of people that represent his different appointments. I hope to make a calendar very soon so he can see a week's plan at a time. Today, I took pics of Mr. Bill the front desk man at the radiation clinic and Kerry, Alex's physical therapist. Anyway, when they called me back to get Alex he was awake and talking to the nurse. She was smiling that enchanted smile only Alex can bring to one's face. I knew immediately he was going to be fine.
Today was also a fine day because the for the first time in my life professionals cleaned my house. It was so great! We left to have lunch with Steve and when I got home, the house was sparkling!!! WOW! Not much beats a clean house that took no exertion on your part. I hope I don't get to used to this special treatment. Thank you (you know who you are) for this wonderful gift. It is such a joy and relief to everyone in the house.
Alex actually has had a pretty good day. He wasn't filled with energy or anything at PT but he did well. He ate okay but drank 2.5 Spider milks today. His drool is gone and the nurse commented that his facial droop was also gone. (She saw Alex last Wednesday). The doc has reduced Alex's steroid dose from 6 to 4mg per day. They don't want his cheeks to get so big that his "mask" does not fit properly during radiation. I'm all for that as long as he continues to improve.
Well, Steve takes Alex tomorrow morning. I have a list of tasks to get done. Zoe had a play date today and came home exhausted but happy. She and Malena love their time together. I have received many offers for dinners and would ask that everyone give me some time to respond. I am so overwhelmed right now.
Okay, well I have to say thank you all for the prayers and positive energy. I feel better today and just keep thinking positively and trying my best to stay in the moment. We'll see how long that lasts!! =0)
Have a great day! God bless!
G
Monday, April 09, 2007
Monday, April 9th
Well, Alex did pretty well this morning. He has said several times that he is scared because "everything is changing". I hope to take him to see his play therapist this afternoon. Radiation went fine. He fell asleep in my arms. The the doctor showed us the mapping they had been doing for Alex. The new tumor is about 3 cm x 6 cm. It is much more substantial than either Steve or I comprehended last week and the sight of it's size and location are very disturbing.
After radiation we headed to Children's to see Dr. F. We had several questions for him and he explained a bit more to us today. Without going into the details, the speed and non-enhancing during imaging of this tumor are compatible with a high grade, terminal tumor. The fact that the spectograph did not show "compatibility with a high grade tumor" does not mean much without a biopsy which is not possible. So that is the dilemma. Another MRI will not be done (unless Alex shows signs of neurological damage) until 4 weeks after radiation. So it will be 10 weeks before we have imaging to show the effects of this treatment regime. Otherwise he will be monitored by the doctors to watch his physical changes. Swelling from the radiation can cause a decrease in physical abilities but so can a tumor(s) that is not responding the the radiation/chemo treatments.
The doctor gave us some timeframe parameters that I will not share here because I don't want to give that thinking any power. Steve and I decided last night that we would not ask for efficacy percentages for the treatments either. The doctor started talking about time tables before we could stop him. I have to say, that was excruciating information. I just want to curl up and cry and cry and cry. Fortunately, I can't right now. I did some crying in my neighbors arms when we picked up Zoe and that helped. Right now I am just going to try to make it through this day, somehow.
God bless, please pray for Alex to beat the odds and be healed. It is an option and the only one I will accept.
G
After radiation we headed to Children's to see Dr. F. We had several questions for him and he explained a bit more to us today. Without going into the details, the speed and non-enhancing during imaging of this tumor are compatible with a high grade, terminal tumor. The fact that the spectograph did not show "compatibility with a high grade tumor" does not mean much without a biopsy which is not possible. So that is the dilemma. Another MRI will not be done (unless Alex shows signs of neurological damage) until 4 weeks after radiation. So it will be 10 weeks before we have imaging to show the effects of this treatment regime. Otherwise he will be monitored by the doctors to watch his physical changes. Swelling from the radiation can cause a decrease in physical abilities but so can a tumor(s) that is not responding the the radiation/chemo treatments.
The doctor gave us some timeframe parameters that I will not share here because I don't want to give that thinking any power. Steve and I decided last night that we would not ask for efficacy percentages for the treatments either. The doctor started talking about time tables before we could stop him. I have to say, that was excruciating information. I just want to curl up and cry and cry and cry. Fortunately, I can't right now. I did some crying in my neighbors arms when we picked up Zoe and that helped. Right now I am just going to try to make it through this day, somehow.
God bless, please pray for Alex to beat the odds and be healed. It is an option and the only one I will accept.
G
Saturday, April 07, 2007
Saturday, April 7th
Good morning. I can't sleep again even though I am tired. I thought that I should write about Alex for this post. To begin, Alex is such an amazing kid, a realtrooper, and my hero. If you don't know him, you should know that his smile lights up the room and no one can resist smiling back at him when they see it. It has always, always been that way since the day he was born. I remember parents and strangers commenting to us how amazingly infectious Alex's constant smile is. He is very smart and nothing gets by him. He sleeps with Steve and me alot lately and recently will grab one of our arm's and put it over him. He loves to snuggle and this past week wants me "to sit with him" more than ever. He loves rainbows and coloring. He is very much into video games (accessed through hospital waiting rooms/infusion room) and has started playing games on Nick.com and NickJr.com at home. He watches a lot of "shows" nowadays. He loves SpongeBob Squarepants, Wow Wow Wubzee (sp?), Fairly OddParents, Foster's Home for Imaginary Friends and Caillou. His favorite restaurant is Macaroni Grill because of the cool cheese grater they use at the table over his Fettucini Alfredo. Besides pasta his other favorite foods are waffles and pancakes with lots of syrup and his favorite beverages are Root Beer and "Spider milk". He loves his sister very much but she can annoy him at times, especially when she is between him and the TV. He loves to blow bubbles, shoot bubbles, BUBBLES! He is an incredible batter and loves to play Tball as well as hit my and Steve's pitches. (Truly he is amazing at this.) He enjoys lying in the hammock under the tree outside on nice days. He prefers button down shirts nowadays. SpiderMan is his absolute favorite super hero and for the last three days "shit" has slipped out of his mouth on more than one occasion!
This past week has been very hard on him. When I was talking to my sister on the phone, she said "well, you know not being able to predict what is happening, is the scariest thing to a child." That makes a lot of sense and I believe it is true in our case as well. He exhibits a lot of anxiety during the initial event i.e. first time nurse flushed his line at home, first sponge bath. But each and every time after that he gets more used to it and yesterday, he even said in a very matter-of-fact tone something about his line needing flushed. He truly hated the sponge bath Thursday night. If anyone has a space heater they can loan us, we'd appreciate it. Steve went to several "home" stores and could not find one the other night. We'll keep looking.
Last night we went out to dinner with Alex's best friend's family. They are such a wonderful family and it is always so easy to be around them. The dinner was good and Alex ate his cheesy, buttered noodles very well (steroids have made a world of difference in his abiltity to eat and drink). Zoe started running a fever and was pretty miserable. On the way home, Alex said "Mommy, I'm scared". In response, I talked about how scary the last week has been since everything is so different. We listed everything that is different: hospital, doctors, new line, flushing, baths, medicine and that it is all because we have to fight the new bump with radiation. I know he hears that, but like the rest of us, really can't comprehend what is coming.
When we got home, Steve checked the messages and then went to the porch. He brought in a box of chemo drugs and in the box is an "Emergency Spill Kit"! I can't tell you how uncomfortable I am with having chemo drugs in the house and the prospect of administering them myself. I found out that the chemo has to be administered one to four hours prior to radiation and since Alex will be under anaesthesia for radiation he gets "dibs" on the machine, so his appointments are at 8:30am. (Alex can't eat or drink until after the chemo/radiation is complete). A nurse is coming by Monday morning at 6:30am to teach us how to do the chemo. Then we'll head out to radiation and then go to see Dr. Foreman for an exam. I have said that Monday will be a day from hell. I need to change my thinking and know that it is the beginning of Alex's wellness and wholeness.
Well, today will be full of errands, egg decorating and hopefully "The Ten Commandments" will be on this evening. I remember watching that movie every night prior to Easter when I was a kid. I really love it. I have never seen it for rent. I'll have to check on that. It is a classic though, don't you think?
Sunday we will visit friends for brunch. Their kids get along well with Alex and it will be a real treat for us all.
I just want to say thanks to everyone for their offers of help and support. I have two families offering to walk Roxie and play dates set up for Zoe. Yesterday, Annie called and told me that the old school will allow her to give her kids' "spots" for summer school to Alex and Zoe. So it looks like Zoe will be back at school soon. I am so excited for her. She is just going to love it and blossom there. This is a wish come true for her/me. In addition, a wonderful woman and former coworker of Steve's, contacted me yesterday and wants to have a benefit for us. This is truly an amazing offer and I can't wait to meet her. Thank you all for your kind words and good thoughts. Let's just keep thinking positively and praying!
Love and God bless, Happy Easter!
G
This past week has been very hard on him. When I was talking to my sister on the phone, she said "well, you know not being able to predict what is happening, is the scariest thing to a child." That makes a lot of sense and I believe it is true in our case as well. He exhibits a lot of anxiety during the initial event i.e. first time nurse flushed his line at home, first sponge bath. But each and every time after that he gets more used to it and yesterday, he even said in a very matter-of-fact tone something about his line needing flushed. He truly hated the sponge bath Thursday night. If anyone has a space heater they can loan us, we'd appreciate it. Steve went to several "home" stores and could not find one the other night. We'll keep looking.
Last night we went out to dinner with Alex's best friend's family. They are such a wonderful family and it is always so easy to be around them. The dinner was good and Alex ate his cheesy, buttered noodles very well (steroids have made a world of difference in his abiltity to eat and drink). Zoe started running a fever and was pretty miserable. On the way home, Alex said "Mommy, I'm scared". In response, I talked about how scary the last week has been since everything is so different. We listed everything that is different: hospital, doctors, new line, flushing, baths, medicine and that it is all because we have to fight the new bump with radiation. I know he hears that, but like the rest of us, really can't comprehend what is coming.
When we got home, Steve checked the messages and then went to the porch. He brought in a box of chemo drugs and in the box is an "Emergency Spill Kit"! I can't tell you how uncomfortable I am with having chemo drugs in the house and the prospect of administering them myself. I found out that the chemo has to be administered one to four hours prior to radiation and since Alex will be under anaesthesia for radiation he gets "dibs" on the machine, so his appointments are at 8:30am. (Alex can't eat or drink until after the chemo/radiation is complete). A nurse is coming by Monday morning at 6:30am to teach us how to do the chemo. Then we'll head out to radiation and then go to see Dr. Foreman for an exam. I have said that Monday will be a day from hell. I need to change my thinking and know that it is the beginning of Alex's wellness and wholeness.
Well, today will be full of errands, egg decorating and hopefully "The Ten Commandments" will be on this evening. I remember watching that movie every night prior to Easter when I was a kid. I really love it. I have never seen it for rent. I'll have to check on that. It is a classic though, don't you think?
Sunday we will visit friends for brunch. Their kids get along well with Alex and it will be a real treat for us all.
I just want to say thanks to everyone for their offers of help and support. I have two families offering to walk Roxie and play dates set up for Zoe. Yesterday, Annie called and told me that the old school will allow her to give her kids' "spots" for summer school to Alex and Zoe. So it looks like Zoe will be back at school soon. I am so excited for her. She is just going to love it and blossom there. This is a wish come true for her/me. In addition, a wonderful woman and former coworker of Steve's, contacted me yesterday and wants to have a benefit for us. This is truly an amazing offer and I can't wait to meet her. Thank you all for your kind words and good thoughts. Let's just keep thinking positively and praying!
Love and God bless, Happy Easter!
G
Thursday, April 05, 2007
Thursday, April 5th
Well, yesterday went well. The assimilation at Radiation Oncology was about an hour and a half and Alex slept all the way home. Zoe had another play date with Malena and they are becoming fast friends. Alex did have a lot of trouble with his swallow yesterday. Since the MAW trip we have noticed that his drool is worsening and at night he was choking more even when he had Benadryl. Well as of yesterday, he officially choked during his waking hours while eating and drinking. These are noy little chokes either, they are very hard on him and made him very tenative about eating or drinking yesterday. The doctor says that once the steroids kick in (started at lunch yesterday) that this will improve. I have to say though that he was able to eat his breakfast and drink one Spidermilk without choking this morning, so maybe the docs are right.
Well, radiation/chemo officially starts Monday. We have had so many offers of support but I really don't know how to respond. We just don't have any idea how things will be during this "new, new normal". It looks like housework is taken care of for a while. YIPPEE!!! And some parents are pooling funds for tuition assistance at the old school. WOW!!! I have offers for dinners, etc and have just signed up for extra rich milk to be delivered every week for the kids. I do have some thoughts on ways to help. Every once in a while we need someone to walk Roxie. She is used to being walked for an hour in the morning and half an hour in the evening. I can foresee this as being a challenge to continue and maintain in the coming weeks. She also needs to go to obdience training. So if anyone is available (at our cost) to actually take her to some classes, we would be most grateful. She is now 18 weeks old, about 40 pounds and desperately needs to learn some manners. She has the potty training down and is a smart dog, but still very puppy and sometimes she can really be alot to handle. Finally, I would like to set up more play dates for Zoe until they find a spot at the old school. She is going to be so bored if she is tied to this house while Alex gets well. She is so over me and my face! I hope our kid swaps with Malena will continue on Wednesdays and Fridays but that leaves a lot of times for other friends to visit or be visited. Finally, if someone could just shadow me and help me keep my head on straight that would be GREAT! I really feel as if I am losing it. I can't remember anything. I have no energy for anything (need someone to get my butt in gear and exercise) and I really just want to sleep! Is that bad?
So Steve had beers with a friend of his that has actually walked this walk. I think it was good for Steve to have this sit down and talk. He came home and said that he was told "there are no wrong decisions". I had to get clarity on this point but agree. It is comforting to know that we won't be judged and criticized by families that have been through this.
A nurse came by the house yesterday to teach me how to care for Alex's new Broviac line. Alex did not like it at all, but he calmed down pretty quickly once he realized what was actually happening. He is very sensitive to sticky so the tape used to hold the gauze over the line on his chest is quite upsetting to him. I still don't know how chemo will be handled but I think it will be done at home. I have a call into the doctor's office to find out more info. I also want to get Alex back on Oxygen. His color is sallow and he is acting the same way he did before they put him on O2 before (easily aggitated, etc.).
Well, this was supposed to be short and sweet. I don't think I accomplished either. Until Tuesday morning, I had no idea Easter was this Sunday. That kinda made me very mad. Usually I would have the house decorated and plans made, clothes bought, etc. But to date nothing has been done. I hope to change that today, but errands may get in the way! Oh well, there is always 2 more days after today! Wish me luck!
Okay, TTFN, have a great Spring day!
God bless,
G
Well, radiation/chemo officially starts Monday. We have had so many offers of support but I really don't know how to respond. We just don't have any idea how things will be during this "new, new normal". It looks like housework is taken care of for a while. YIPPEE!!! And some parents are pooling funds for tuition assistance at the old school. WOW!!! I have offers for dinners, etc and have just signed up for extra rich milk to be delivered every week for the kids. I do have some thoughts on ways to help. Every once in a while we need someone to walk Roxie. She is used to being walked for an hour in the morning and half an hour in the evening. I can foresee this as being a challenge to continue and maintain in the coming weeks. She also needs to go to obdience training. So if anyone is available (at our cost) to actually take her to some classes, we would be most grateful. She is now 18 weeks old, about 40 pounds and desperately needs to learn some manners. She has the potty training down and is a smart dog, but still very puppy and sometimes she can really be alot to handle. Finally, I would like to set up more play dates for Zoe until they find a spot at the old school. She is going to be so bored if she is tied to this house while Alex gets well. She is so over me and my face! I hope our kid swaps with Malena will continue on Wednesdays and Fridays but that leaves a lot of times for other friends to visit or be visited. Finally, if someone could just shadow me and help me keep my head on straight that would be GREAT! I really feel as if I am losing it. I can't remember anything. I have no energy for anything (need someone to get my butt in gear and exercise) and I really just want to sleep! Is that bad?
So Steve had beers with a friend of his that has actually walked this walk. I think it was good for Steve to have this sit down and talk. He came home and said that he was told "there are no wrong decisions". I had to get clarity on this point but agree. It is comforting to know that we won't be judged and criticized by families that have been through this.
A nurse came by the house yesterday to teach me how to care for Alex's new Broviac line. Alex did not like it at all, but he calmed down pretty quickly once he realized what was actually happening. He is very sensitive to sticky so the tape used to hold the gauze over the line on his chest is quite upsetting to him. I still don't know how chemo will be handled but I think it will be done at home. I have a call into the doctor's office to find out more info. I also want to get Alex back on Oxygen. His color is sallow and he is acting the same way he did before they put him on O2 before (easily aggitated, etc.).
Well, this was supposed to be short and sweet. I don't think I accomplished either. Until Tuesday morning, I had no idea Easter was this Sunday. That kinda made me very mad. Usually I would have the house decorated and plans made, clothes bought, etc. But to date nothing has been done. I hope to change that today, but errands may get in the way! Oh well, there is always 2 more days after today! Wish me luck!
Okay, TTFN, have a great Spring day!
God bless,
G
Tuesday, April 03, 2007
Tuesday, April 3rd pt. 2
Hi everyone, well I have to say kids are amazing. Alex was very scared this morning but once the IV was out and he was in his stroller in recovery he just slept for an hour or so. As a matter of fact, we all took a nap in the recovery room. He was discharged at 3:15pm and was ready to do his PT at 4p. He did a good job too. He really works hard for Kerry and it is good to see him moving around.
We just finished dinner and I have a lot of errands to run but wanted everyone to know that Alex is happy and well. Tomorrow he goes to Radiation Oncology for a catscan and MRI to pinpoint the location of the 2nd tumor and plan out the radiation. I have no idea how long we will be there.
Zoe spent the day with her friend, Malena. These two girls are too cute together and have a great time playing. She'll be at Malena's house tomorrow as well. Thanks so much to Dean and Elena, we just met this family and they have opened their homes to Zoe and just been great to us.
Okay, gotta get.
God bless, G
We just finished dinner and I have a lot of errands to run but wanted everyone to know that Alex is happy and well. Tomorrow he goes to Radiation Oncology for a catscan and MRI to pinpoint the location of the 2nd tumor and plan out the radiation. I have no idea how long we will be there.
Zoe spent the day with her friend, Malena. These two girls are too cute together and have a great time playing. She'll be at Malena's house tomorrow as well. Thanks so much to Dean and Elena, we just met this family and they have opened their homes to Zoe and just been great to us.
Okay, gotta get.
God bless, G
Tuesday, April 3rd
Well I can't sleep so I thought blogging might help. First of all, I must say thanks to everyone for their support. Steve and I were able to go out Saturday night for the first time in a long time. Tina (does great posts) was able to take care of the kids for us on short notice. Thanks Tina! Also, some friends and neighbors got together and arranged for a housekeeper to come to the house next Tuesday. This is so very awesome, since I have been talking about getting someone out to help with the housework, but just can't stop thinking about how far that money would go if I would just do the work myself. Also, the photographer that had the photo contest that Zoe was a finalist in, has offered us a family session. Each and every one of these are evidence that truly great people are around us and that there is much to be grateful for at this time.
Speaking of gratitude, I think I will buy a "gratitude journal" just to keep the nasty "what if" monsters away. I have found my mind wandering in very dangerous, dark territories lately and I really need to pull myself up out of this. I have scheduled an appointment to go back to my counselor on Friday. Steve and I decided that it is worth the extra cost. I think I will just go in and start crying and not stop until the hour is up. That or screaming would really help right now. We'll see what comes out, but this is getting harder already.
I see Alex's facial paralysis getting worse every couple of days. His drool is substantial now; especially when he gets upset and causes himself to gag. I hate that. I want that to go away NOW! He obviously does not feel stable on his feet but we try at every opp to get him to walk a bit. He says he feels dizzy. I don't know whether I fight that battle or not. Today, he may have eaten three bites of food and did not finish one glass of "spider milk" (vanilla Carnation breakfast). I begged, bought cookies, chips, pot pie, but nothing worked not even his favorite dish, shell noodles with white cheddar sauce. Since he has surgery today, he won't be able to eat until this afternoon either. Maybe he will have an appetite then.
So the plan is that Steve will take Alex to the radiation treatments each morning and then go to work. I am grateful to Steve for offering this. I don't know how long one parent will be able to do it though. We'll just have to see.
Saturday, Alex and I went to a former classmate's birthday party. It was good to see some old, familiar faces but I started crying at the departure when the sympathetic hugs started. All of the kids had grown so. I know Alex misses his old friends. I have inquiries into the old school to see if they have room in the summer session for Alex and/or Zoe. Fingers crossed!
My stomach has been upset for two days now. Alex's pediatrician called this evening to get caught up and said that Alex needs to be put on an antacid to avoid ulcers. She wants me to talk to the docs about this. Seems that the stress and side effects of radiation can cause ulcers in kids. Whippee, something else to worry about. I also asked her about getting a second opinion. She said what several others have said. That Dr. Foreman is world renowned and if he and his colleagues don't know what is going on then no one will and that will not change the treatment. Dr. Foreman is also going to a pediatric oncology brain specialists forum in a couple of weeks. He and the other 14 specialists from around the world will meet and he said he is taking Alex's case to them as well. We know he has already asked several of them and none of them have ever seen a JPA do this either. So we are pretty comfortable with him and his level of expertise and access to the world's best of the best. Instead of second opinions and doubt now, we need PRAYERS! Lots and lots of prayers that the radiation will work and Alex will be better than ever when this is all over. I feel time is of the essence and we just need to "keep moving forward" (from "Meet the Robinsons"; too scary for 4 year olds in Alex and Esther's opinion).
Well, this has taken up 40 minutes so I best stop. Have a great day and please send positive energy and thoughts!
God bless.
G
Speaking of gratitude, I think I will buy a "gratitude journal" just to keep the nasty "what if" monsters away. I have found my mind wandering in very dangerous, dark territories lately and I really need to pull myself up out of this. I have scheduled an appointment to go back to my counselor on Friday. Steve and I decided that it is worth the extra cost. I think I will just go in and start crying and not stop until the hour is up. That or screaming would really help right now. We'll see what comes out, but this is getting harder already.
I see Alex's facial paralysis getting worse every couple of days. His drool is substantial now; especially when he gets upset and causes himself to gag. I hate that. I want that to go away NOW! He obviously does not feel stable on his feet but we try at every opp to get him to walk a bit. He says he feels dizzy. I don't know whether I fight that battle or not. Today, he may have eaten three bites of food and did not finish one glass of "spider milk" (vanilla Carnation breakfast). I begged, bought cookies, chips, pot pie, but nothing worked not even his favorite dish, shell noodles with white cheddar sauce. Since he has surgery today, he won't be able to eat until this afternoon either. Maybe he will have an appetite then.
So the plan is that Steve will take Alex to the radiation treatments each morning and then go to work. I am grateful to Steve for offering this. I don't know how long one parent will be able to do it though. We'll just have to see.
Saturday, Alex and I went to a former classmate's birthday party. It was good to see some old, familiar faces but I started crying at the departure when the sympathetic hugs started. All of the kids had grown so. I know Alex misses his old friends. I have inquiries into the old school to see if they have room in the summer session for Alex and/or Zoe. Fingers crossed!
My stomach has been upset for two days now. Alex's pediatrician called this evening to get caught up and said that Alex needs to be put on an antacid to avoid ulcers. She wants me to talk to the docs about this. Seems that the stress and side effects of radiation can cause ulcers in kids. Whippee, something else to worry about. I also asked her about getting a second opinion. She said what several others have said. That Dr. Foreman is world renowned and if he and his colleagues don't know what is going on then no one will and that will not change the treatment. Dr. Foreman is also going to a pediatric oncology brain specialists forum in a couple of weeks. He and the other 14 specialists from around the world will meet and he said he is taking Alex's case to them as well. We know he has already asked several of them and none of them have ever seen a JPA do this either. So we are pretty comfortable with him and his level of expertise and access to the world's best of the best. Instead of second opinions and doubt now, we need PRAYERS! Lots and lots of prayers that the radiation will work and Alex will be better than ever when this is all over. I feel time is of the essence and we just need to "keep moving forward" (from "Meet the Robinsons"; too scary for 4 year olds in Alex and Esther's opinion).
Well, this has taken up 40 minutes so I best stop. Have a great day and please send positive energy and thoughts!
God bless.
G
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