Thank you everyone for your awesome support!! Thank you Aunt Jill for recommending I share our struggles this week. Thank you everyone for supporting us and loving us. I cannot even begin to share all the uplifting songs, scriptures, quotes, prayers, love & advise I have been sent since my post on Thursday!! We are doing much better today because WE ARE HOME!!!
I appreciate all the love and support we have recieved and although we still have much to get through I know that God will be with us & so will our family and friends.
Love you all,
Jamie
Saturday, September 12, 2009
Thursday, September 10, 2009
Emotional Times
Yesterday was such a bad day!!! I know God has His reasons for everything, but I found myself asking "why us"? Why Matt's Cancer and then Ben? Why does my baby have to endure this torture? I love the Lord with all my heart and I know through this we will grow stronger but man was I bummed yesterday.
We need prayer but specifically Matt and I need to remain united through this and we are trying not to fight but to be truthful we have been. It is so easy to take out anger on each other while we are going through this. It breaks my heart because I really can be nasty when I am frustrated and I have been taking it out on him and Matt is so gentle in spirit normally, but he is so stressed right now that even he has been not so nice. I hate it when we are not getting along. So pray for our marriage during this time because it is not easy and we are far from the end so am I sure that yesterday will not be the only bad day.
We are still at the hospital and hoping for release soon. Ben's ANC count (a multiplication of his white blood cells and his neutriphils) was zero today and they will not release us until they come up.
Ben is having a hard time the last few days. He really misses his Daddy and when Matt comes to the hospital it for such a short amount of time(Matt has been staying home to keep the company afloat) that Ben has a breakdown because he misses him so much. So Ben needs prayer for just coping. He also is a big fatty now :) He has gained almost nine pounds!!! He just eats like crazy on these steroids. We will send pics as soon as we get our camera here.
Love you all for your prayer support!!
Jamie
We need prayer but specifically Matt and I need to remain united through this and we are trying not to fight but to be truthful we have been. It is so easy to take out anger on each other while we are going through this. It breaks my heart because I really can be nasty when I am frustrated and I have been taking it out on him and Matt is so gentle in spirit normally, but he is so stressed right now that even he has been not so nice. I hate it when we are not getting along. So pray for our marriage during this time because it is not easy and we are far from the end so am I sure that yesterday will not be the only bad day.
We are still at the hospital and hoping for release soon. Ben's ANC count (a multiplication of his white blood cells and his neutriphils) was zero today and they will not release us until they come up.
Ben is having a hard time the last few days. He really misses his Daddy and when Matt comes to the hospital it for such a short amount of time(Matt has been staying home to keep the company afloat) that Ben has a breakdown because he misses him so much. So Ben needs prayer for just coping. He also is a big fatty now :) He has gained almost nine pounds!!! He just eats like crazy on these steroids. We will send pics as soon as we get our camera here.
Love you all for your prayer support!!
Jamie
Sunday, September 6, 2009
Sunday Afternoon
We did not get to go home yesterday after all....ugghh! Well hopefully Tuesday will be the day!
Ben had a lot go on yesterday, it was a big day. Dr. Henry (Ben's oncologist) came in and said that they were going to have to re-do the last bone marrow asperation because two different doctor's had come up with two very different results. Last week we were told that his "blasts" were at 2% which is good, but a pathologist had double checked the results and said that his count was 42% which is very bad for ben. So he had his Bone marrow asperation at noon and at about 5:00 we had the results. Ben's "blasts" are at 0%!!!! This means he is in the first stage of remission!! Also his Chromosone testing that was looking for specific Leukemia abnormalities came back positive for "TEL/AML 1" which is also good news. This is one of the rarest abnormalities but also one of the best. Dr. Henry said that because of the "TEL/AML 1" Ben is now at 90% curability instead of 80% & he is considered LOW RISK!!! God is so good to us! Ben has one more test in two weeks, this test is on the microcellular level. If the results of this test come back good then Ben will stay LOW RISK and he will not need a more aggressive Chemo. This is such wonderful news!!
Ben had to have a platelet transfusion before his procedure and a red blood transfusion right after. He also received his IV chemo called "vinchristine". But thank the Lord they have very specific protocol before administering Chemo into his port. They always test the line to make sure that it is inserted correctly so that the Chemo goes into the blood stream and not the body tissue because it would destroy any tissue it was injected into. When they tested him it was NOT correct so he actually had one side of his chest all swollen because it had filled with IV fluid. Nothing bad happened as a result from this it just had to absorb into his body and was perfectly normal looking this morning.
He has been doing well with the treatments so far no vomiting or nausea. He is handling everything very well. I went home today to get some work done and then drove to Aunt Jill's to visit Olivia. Of course she is doing wonderful with all the attention from the girls. I can't wait to be home so I can have both my babies with me!! :)
Love you all
Jamie
Ben had a lot go on yesterday, it was a big day. Dr. Henry (Ben's oncologist) came in and said that they were going to have to re-do the last bone marrow asperation because two different doctor's had come up with two very different results. Last week we were told that his "blasts" were at 2% which is good, but a pathologist had double checked the results and said that his count was 42% which is very bad for ben. So he had his Bone marrow asperation at noon and at about 5:00 we had the results. Ben's "blasts" are at 0%!!!! This means he is in the first stage of remission!! Also his Chromosone testing that was looking for specific Leukemia abnormalities came back positive for "TEL/AML 1" which is also good news. This is one of the rarest abnormalities but also one of the best. Dr. Henry said that because of the "TEL/AML 1" Ben is now at 90% curability instead of 80% & he is considered LOW RISK!!! God is so good to us! Ben has one more test in two weeks, this test is on the microcellular level. If the results of this test come back good then Ben will stay LOW RISK and he will not need a more aggressive Chemo. This is such wonderful news!!
Ben had to have a platelet transfusion before his procedure and a red blood transfusion right after. He also received his IV chemo called "vinchristine". But thank the Lord they have very specific protocol before administering Chemo into his port. They always test the line to make sure that it is inserted correctly so that the Chemo goes into the blood stream and not the body tissue because it would destroy any tissue it was injected into. When they tested him it was NOT correct so he actually had one side of his chest all swollen because it had filled with IV fluid. Nothing bad happened as a result from this it just had to absorb into his body and was perfectly normal looking this morning.
He has been doing well with the treatments so far no vomiting or nausea. He is handling everything very well. I went home today to get some work done and then drove to Aunt Jill's to visit Olivia. Of course she is doing wonderful with all the attention from the girls. I can't wait to be home so I can have both my babies with me!! :)
Love you all
Jamie
Friday, September 4, 2009
AMEN
We are going home tomorrow morning!! Thank you Lord! Ben is so happy to go home to see Olivia and play with his "real toys". I will have to go grocery shopping first thing in the morning because Ben is eating so much food. It is 1:30 and he has eaten two egg and cheese omelets two sausage patties two orders of macaroni, five taquitos, and one personal size pizza and he is still saying he is hungry!!! haha They warned us!
We are very happy to take him home and fill him full of really good food instead of the junk he is eating. We are making it our prayer that we can use this time to teach him to love all the great fruits and veggies that are so good for him!! The steroids make him crave food so much that he will eat anything so we will use this to our advantage.
Praise the Lord!! Thank you so much for your prayers
Jamie
We are very happy to take him home and fill him full of really good food instead of the junk he is eating. We are making it our prayer that we can use this time to teach him to love all the great fruits and veggies that are so good for him!! The steroids make him crave food so much that he will eat anything so we will use this to our advantage.
Praise the Lord!! Thank you so much for your prayers
Jamie
Wednesday, September 2, 2009
Wednesday Evening
We recieved some lovely get well soon cards at the hospital today. It was very encouraging for Ben. He loved the pictures and one of the cards plays music and he has been playing with it today.
When Ben has an IV needle in his port they cover it with a dressing that is verrrrrrry adhesive and they have to change it once a week. His poor little sensitive skin is all bruised up from removing the tape & when we get released we will have to take it off again.....poor guy. He is such a little champ!
Ben told the nurses today that his Mama & Daddy are the nicest ones he has. They laughed so hard and told him we are the ONLY ones he has and he told them "NO I have many"(I don't know what this means). They thought this was hilarious. I am so glad the nurses like him so much it makes me feel better when they are taking care of him to know that. It has been a wonderful Blessing to see how God is showing himself too us in so many of the Christian nurses.
I am back at the hotel doing laundry!! Ben is really sweaty all the time now...it's a side effect of the Chemo. His DogDog ( his stuffed animal) didn't smell to great so I am washing him along with all of our dirty clothes.
Matt and I are tired but doing well.... we miss not seeing our little baby girl all the time but Olivia is doing well. Wherever she goes she is getting loved on and I am so grateful.
Love you all,
Jamie
When Ben has an IV needle in his port they cover it with a dressing that is verrrrrrry adhesive and they have to change it once a week. His poor little sensitive skin is all bruised up from removing the tape & when we get released we will have to take it off again.....poor guy. He is such a little champ!
Ben told the nurses today that his Mama & Daddy are the nicest ones he has. They laughed so hard and told him we are the ONLY ones he has and he told them "NO I have many"(I don't know what this means). They thought this was hilarious. I am so glad the nurses like him so much it makes me feel better when they are taking care of him to know that. It has been a wonderful Blessing to see how God is showing himself too us in so many of the Christian nurses.
I am back at the hotel doing laundry!! Ben is really sweaty all the time now...it's a side effect of the Chemo. His DogDog ( his stuffed animal) didn't smell to great so I am washing him along with all of our dirty clothes.
Matt and I are tired but doing well.... we miss not seeing our little baby girl all the time but Olivia is doing well. Wherever she goes she is getting loved on and I am so grateful.
Love you all,
Jamie
Wednesday Morning
Yesterday was a good day for Ben.....they let him go without the IV...the doctor said he would be home right now if we weren't waiting on paperwork so their is no reason why he should have to be connected to the IV....Ben was thrilled!!
He is eating so much food it is crazy! He is constantly asking for something to eat and his new things is to ask for "many" i.e. "many" tacos or "many" sandwiches.....it makes me laugh so hard.
Today is the day where they change the needle in his Port-a-Cath so they are going to take it out and leave it out until we find out if he gets to go home today.
Love you all
Jamie
He is eating so much food it is crazy! He is constantly asking for something to eat and his new things is to ask for "many" i.e. "many" tacos or "many" sandwiches.....it makes me laugh so hard.
Today is the day where they change the needle in his Port-a-Cath so they are going to take it out and leave it out until we find out if he gets to go home today.
Love you all
Jamie
Tuesday, September 1, 2009
Today It All Feels Real
We got the results of the Lumbar Puncture & Bone Marrow Asperation Today. It is really good news because Ben only has 2% blast cells which is much less than the 97% of blast cells the day he was admitted. This means that the Chemo Therapy is working great and any fear we had that it would not work and they would have to try other measures is gone. Praise God!! I needed good news today. Isn't it crazy that they can rid him of so many bad cells but we still have to go through this for the next 3yrs+ to be sure they get him down to zero percent.
Ben woke up today a very sweet happy boy and very energetic. We had so much fun today, we did puzzles, painted, read stories, he was joking and laughing. It's like he is a new kid. He will have ups and downs for a while but we will take it in stride.
Matt came to relieve me at the hospital and I gave Ben a shower before I left and that is when we noticed that he is beginning to lose his hair. This is a moment when it felt so real!! It wasn't an amount that would show on his head as bald spots or anything, but we showed the nurses and they said this is how it starts. His nurse said that every kid is different but that it would probably continue in this fashion until he lost most of it. We are going to buzz it down as short as we can so that it is less traumatic for him. We don't want him waking up with lots of hair on his pillow. He was scratching his scalp all day and the nurse said it is itchy for him when it begins to fall out so buzzing it will help with this too.
We did not hear anything about when we will be realeased today. It again really just depends on the insurance getting processed and there really is no telling when they will have it all done.
Ben and I started doing puzzles today....the kids room has a cupboard full of puzzles and a box full of missing pieces so we put together puzzles today then searched the box for their missing pieces....see this is why we need to go home :) too much time on our hands!!
Love you all!!
Jamie
Ben woke up today a very sweet happy boy and very energetic. We had so much fun today, we did puzzles, painted, read stories, he was joking and laughing. It's like he is a new kid. He will have ups and downs for a while but we will take it in stride.
Matt came to relieve me at the hospital and I gave Ben a shower before I left and that is when we noticed that he is beginning to lose his hair. This is a moment when it felt so real!! It wasn't an amount that would show on his head as bald spots or anything, but we showed the nurses and they said this is how it starts. His nurse said that every kid is different but that it would probably continue in this fashion until he lost most of it. We are going to buzz it down as short as we can so that it is less traumatic for him. We don't want him waking up with lots of hair on his pillow. He was scratching his scalp all day and the nurse said it is itchy for him when it begins to fall out so buzzing it will help with this too.
We did not hear anything about when we will be realeased today. It again really just depends on the insurance getting processed and there really is no telling when they will have it all done.
Ben and I started doing puzzles today....the kids room has a cupboard full of puzzles and a box full of missing pieces so we put together puzzles today then searched the box for their missing pieces....see this is why we need to go home :) too much time on our hands!!
Love you all!!
Jamie
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