Merry Christmas!!!!
Today will be a tiring day for my little guy. He had his last appointment on this last Friday and it was the beginning of a new phase. They have put him on steroids again. It is a higher dose each day but only seven days this time followed by seven days off then another seven days on. I am not sure how much weight he will gain this time but at least he will be able to enjoy all the Holiday food. He also had a spinal tap on Friday and it did come back negative for cells in his spinal fluid. He had Vinchristine in his port IV and a new Chemo they nickname the "red one" because it is red and can make Ben's urine turn red. When we warned him of this he looked at us like we were crazy and informed us his is yellow. But since then he has been joking with us that his pee is blue :) He had another appointment today to recieve one more Chemo Drug called PEG. They did this once before when we were in the hospital and this is really not a fun process they have to inject this into his thighs with big long needles. It hurt him really bad and last time he complained of pain in his legs for a few days. Ben(big ben), Val, and Baby Jack got here yesterday and Sean, Jo, Emma, Gabe, Chloe, and Baby Logan will be here late tonight, we also get to have Suvanna with us on Christmas Eve.
Matt's parents will be here today also and they will be staying nearby for a couple of days. We are thrilled to have all our people around us for Christmas!!!! Ben and Olivia are thrilled to have both their grandparents around to spoil them rotten :)
Ben will be having another appointment on Monday to continue this next phase. I think that this is the last phase before maintenance but we will have to see. Once he reaches maintenance he will have steroids on the first five days of each month for the three year maintenance.
Merry Christmas to all of you!!!! We miss you so much especially during this time of year. Thank you for all your Christmas cards!!! Thank you for the blessing of your prayers. We would not be doing well without this support.
Love
Jamie
Tuesday, December 22, 2009
Saturday, December 5, 2009
Ben's First Appointment in Kentucky
The kids and I have made it to Kentucky and we are doing well!! We were blessed to be able to go to Aunt Pam's for Thanksgiving and see everyone before we left. I was sad to say goodbye to everyone but I can now be excited about coming back for visits.
Matt is still in phoenix but he will starting his drive with Daniel on Monday. They are going to make the drive faster than Dad and I did with the kids so hopefully we will see them tuesday night or wednesday morning!! The kids miss Matt like crazy and so do I but we are keeping them distracted with many other things to do around here.
Ben had his first doctor visit at Kosair yesterday. Kosair is two hours away from Dad's house and is also in a different time zone so we had to get up at 4:30 our time to be there at nine o'clock at Kosair. Some of Ben's treatments will be very early in the morning because they will take so long to finish so sometimes we will go there the night before treatment and stay at the Ronald McDonald house. This is an amazing blessing and only seven dollars a night to stay.
I liked the staff at Kosair and so did Ben. He was tired from the trip but he did really good in the office and is such a good boy. There are some differences in his treatment here but we were warned that every doctor does things slightly different. Some of the differences we were happy for and some of them we are not sure what we think but we will be calling our doctor in phoenix to see what they think of these changes as well.
Ben tolerated this treatment well so far but it seems that the timing is that he will start feeling bad tonight or tomorrow morning so we will pray that this won't happen but prepare for it just in case.
We love you all and miss Phoenix already!!
Jamie
Matt is still in phoenix but he will starting his drive with Daniel on Monday. They are going to make the drive faster than Dad and I did with the kids so hopefully we will see them tuesday night or wednesday morning!! The kids miss Matt like crazy and so do I but we are keeping them distracted with many other things to do around here.
Ben had his first doctor visit at Kosair yesterday. Kosair is two hours away from Dad's house and is also in a different time zone so we had to get up at 4:30 our time to be there at nine o'clock at Kosair. Some of Ben's treatments will be very early in the morning because they will take so long to finish so sometimes we will go there the night before treatment and stay at the Ronald McDonald house. This is an amazing blessing and only seven dollars a night to stay.
I liked the staff at Kosair and so did Ben. He was tired from the trip but he did really good in the office and is such a good boy. There are some differences in his treatment here but we were warned that every doctor does things slightly different. Some of the differences we were happy for and some of them we are not sure what we think but we will be calling our doctor in phoenix to see what they think of these changes as well.
Ben tolerated this treatment well so far but it seems that the timing is that he will start feeling bad tonight or tomorrow morning so we will pray that this won't happen but prepare for it just in case.
We love you all and miss Phoenix already!!
Jamie
Thursday, November 12, 2009
Great Adventure!
Today it is official we are moving to Kentucky so Ben can go to Kosair Children's Hospital. We will be so close to my parents and this will provide so much support for us. We will be leaving the day after Thanksgiving to make the trip. We will have to drive because Ben cannot get on an airplane.
Matt will go back to school to continue to work towards being a firefighter and I will be helping Ben (brother ben) run the pest control office from Kentucky. He and Val will be doing all the operations of the business and I will be doing all the accounting and bookkeeping. This will be a good situation for all of us and we are very excited. Ben and Val will be taking the lease on our apartment and this is a blessing to us as well.
We do not know yet if we will be able to go to Thanksgiving at Aunt Pam's house. It all depends on Ben's ANC's. If we can't go Matt and I will still drop by to say goodbye to everyone.
All the prayer and support in Phoenix has been amazing and we can never replace it. We love you all.
Love Jamie
Matt will go back to school to continue to work towards being a firefighter and I will be helping Ben (brother ben) run the pest control office from Kentucky. He and Val will be doing all the operations of the business and I will be doing all the accounting and bookkeeping. This will be a good situation for all of us and we are very excited. Ben and Val will be taking the lease on our apartment and this is a blessing to us as well.
We do not know yet if we will be able to go to Thanksgiving at Aunt Pam's house. It all depends on Ben's ANC's. If we can't go Matt and I will still drop by to say goodbye to everyone.
All the prayer and support in Phoenix has been amazing and we can never replace it. We love you all.
Love Jamie
Wednesday, November 11, 2009
Pray with us for Ben....one of the side effects of the chemo drugs for ben are sores that start in his mouth and work their way through his entire digestive tract. So far we have been blessed and Ben has not had these sores until tonight. He has two large open blisters in his mouth and although he has mouthcare that helps minimize discomfort he is in a lot of pain tonight.
Please Pray for a blessing of Mercy...my heart aches for him right now. He is such a sweet baby and he is even apologizing for crying....Pray for healing of these sores and pray for peaceful sleep for him.
Thank you
Jamie
Please Pray for a blessing of Mercy...my heart aches for him right now. He is such a sweet baby and he is even apologizing for crying....Pray for healing of these sores and pray for peaceful sleep for him.
Thank you
Jamie
Monday, November 9, 2009
Good News!!
We got the results for Ben's MRI today and it came back clear. There is no sign of Luekemia on his brain so they have decided that ben's droopy eye is a common occurence in kids his age and he will grow out of it in time. We have recieved three different Dr.'s opinions on this and feel confident that everything is fine. AMEN!!!! I really was agonizing that he would forever have a droopy eye. I am glad this is not the case because I have vanity issues :)..... I love you all thank you for your prayers about this.
Ben's appointment last Thursday went well, we won a tremendous battle. The battle of the face mask. Because of all the flu breakouts and the scary H1N1 they want every adult and child to wear a mask when they come into the Dr. office. Ben of course refused and screamed bloody murder every time we tried to get him to wear one. I would love to say that through much patience and gentle coaxing I succeeded in getting him to wear one but that of course is not how it went, so what did I do??? I BRIBED HIM OF COURSE....you know you would too!!! So Ben wore his mask the entire 4 hours at his last visit and came home a happy little boy with a brand new train and I came home with my sanity!!!!!
I love you all!! Keep reading and praying. We will have more news later this week so check up on us later.
Jamie
Ben's appointment last Thursday went well, we won a tremendous battle. The battle of the face mask. Because of all the flu breakouts and the scary H1N1 they want every adult and child to wear a mask when they come into the Dr. office. Ben of course refused and screamed bloody murder every time we tried to get him to wear one. I would love to say that through much patience and gentle coaxing I succeeded in getting him to wear one but that of course is not how it went, so what did I do??? I BRIBED HIM OF COURSE....you know you would too!!! So Ben wore his mask the entire 4 hours at his last visit and came home a happy little boy with a brand new train and I came home with my sanity!!!!!
I love you all!! Keep reading and praying. We will have more news later this week so check up on us later.
Jamie
Tuesday, October 27, 2009
Yesterday we went to Ben's Clinic appointment and started the next phase of his treatment. As long as Ben's ANC's stays above a certain level this phase should end mid-february. After February he will be in his maintence phase and we will be to point of going about once a month.
This new phase includes two different chemo drugs given through his IV port every ten days. They will test his liver and kidney's each time before administering these two drugs. He will also need IV fluids for one hour each time so our Doctor Visits for the next months will last about 3-4 hours unless ben needs blood transfusions then they will last 6-8 so we are hoping his blood levels continue to stay up in the good numbers.
I feel weary this week. I am trying to find time to rest while continueing to get everything done. I went to the zoo this morning with Stephanie and it was a lot of fun to get out of the house. We probably won't be able to get out of the house in the following weeks so we wanted him to do some fun things this week.
We are hoping that Ben's counts are high enough that we will be able to spend Thanksgiving at Aunt Pam's house. We have a Doctor's appointment the day before Thanksgiving so we can find out where his ANC's are but they are telling us to expect that from about mid next week to mid-february that it will be more rare to get to do anything out of the house so we are glad that we have been able to go do a few special things with him.
We love you all and we are so grateful and blessed for the prayers and the support from everyone.
Jamie
This new phase includes two different chemo drugs given through his IV port every ten days. They will test his liver and kidney's each time before administering these two drugs. He will also need IV fluids for one hour each time so our Doctor Visits for the next months will last about 3-4 hours unless ben needs blood transfusions then they will last 6-8 so we are hoping his blood levels continue to stay up in the good numbers.
I feel weary this week. I am trying to find time to rest while continueing to get everything done. I went to the zoo this morning with Stephanie and it was a lot of fun to get out of the house. We probably won't be able to get out of the house in the following weeks so we wanted him to do some fun things this week.
We are hoping that Ben's counts are high enough that we will be able to spend Thanksgiving at Aunt Pam's house. We have a Doctor's appointment the day before Thanksgiving so we can find out where his ANC's are but they are telling us to expect that from about mid next week to mid-february that it will be more rare to get to do anything out of the house so we are glad that we have been able to go do a few special things with him.
We love you all and we are so grateful and blessed for the prayers and the support from everyone.
Jamie
Wednesday, October 14, 2009
Wednesday Night
Hey everyone,
We went to the E.R. at PCH last night. Ben is going to have an M.R.I. sometime in the next two weeks. We noticed yesterday that his eyelid is drooping on his left side of his face. We don't really know much yet but they said that this can be caused by lesions on his brain pushing on a certain part of his brain that controls that part of his face. This is what the M.R.I. will tell us. His Spinal Taps have been coming back negative for Leukemia cells and it is rare that leukemia would be in his brain without it first being in his spinal fluid so we are praying that it is something less serious. The Doctor also said that sometimes little kids get pinched nerves that can cause this and eventually they grow out of it. We are praying that this is all it turns out to be but we will know more when the M.R.I. is completed.
Jamie
We went to the E.R. at PCH last night. Ben is going to have an M.R.I. sometime in the next two weeks. We noticed yesterday that his eyelid is drooping on his left side of his face. We don't really know much yet but they said that this can be caused by lesions on his brain pushing on a certain part of his brain that controls that part of his face. This is what the M.R.I. will tell us. His Spinal Taps have been coming back negative for Leukemia cells and it is rare that leukemia would be in his brain without it first being in his spinal fluid so we are praying that it is something less serious. The Doctor also said that sometimes little kids get pinched nerves that can cause this and eventually they grow out of it. We are praying that this is all it turns out to be but we will know more when the M.R.I. is completed.
Jamie
Monday, October 12, 2009
Monday Evening October 12th
I took Ben to the Clinic today and he did well! He had another lumbar puncture with an injection of Chemo into his spinal fluid. They were unable to get a good sample of spinal fluid to be tested because he was bleeding also and it contaminated the fluid. They assured me that this happens often and will continue on the regular schedule for the next spinal tap.
Ben will get a good break here because we do not have to go in at all next Monday and the Monday of the 26th he does not have to have another Spinal tap so that is good.
His ANC was 700 so we cannot go to church again until it comes up. We did not go yesterday because we suspected that they would be low. We did get to go last week and also went to Uncle Tim's and Auntie Carol's after church. It was such a good thing to get to get out of the house and be with people we love. We do feel really cooped up here sometimes. I even got a wonderful manicure from Miss Emily Hope!!
We continue to seek God in this and rely daily on your prayers for us. Love Jamie
Ben will get a good break here because we do not have to go in at all next Monday and the Monday of the 26th he does not have to have another Spinal tap so that is good.
His ANC was 700 so we cannot go to church again until it comes up. We did not go yesterday because we suspected that they would be low. We did get to go last week and also went to Uncle Tim's and Auntie Carol's after church. It was such a good thing to get to get out of the house and be with people we love. We do feel really cooped up here sometimes. I even got a wonderful manicure from Miss Emily Hope!!
We continue to seek God in this and rely daily on your prayers for us. Love Jamie
Friday, October 2, 2009
Become A Donor!!
I wanted to encourage anyone who has been reading this blog to consider becoming a Bone Marrow Donor!! Getting started is not a big deal you just register then they swab the inside of your mouth so they can do a tissue match! Once this is complete Doctor's search the registry for matches and if you are then they contact you for more testing to see if you are a safe match! Most Bone Marrow donations do not even require surgery!!
Ben does not need Bone Marrow at this point and hopefully never but my heart goes out to the Mom's that I have met and the Mom's that I haven't met that are watching their children die because they cannot find a donor!! Please Prayerfully consider that this small thing could save someone's life!!
Thanks
Jamie
Ben does not need Bone Marrow at this point and hopefully never but my heart goes out to the Mom's that I have met and the Mom's that I haven't met that are watching their children die because they cannot find a donor!! Please Prayerfully consider that this small thing could save someone's life!!
Thanks
Jamie
Thursday Night
Hey everyone...Just wanted to let you know that we had to take Ben to the Emergency Room at PCH last night. At about 9:15 we got ben ready for bed and he had a fever. His temp. was 104 so I took him to the ER and they drew his blood and tested to see what his ANC's where. By the time we got to the hospital his temp was 105 so they gave him tylenol. His fever broke and all his other vitals were normal so when his ANC count came back at over 5000 they sent us home. This is a great number to see!! Ben's count is at normal levels now!! Going to the hospital and not getting home until 2:30am is not fun but at least we got to go home at all!!! His temp was normal all day today so they just want us to monitor it and watch in case it spikes again but otherwise the cultures have come back negative for bacteria or infections!!!
Love you all
Jamie
Love you all
Jamie
Wednesday, September 30, 2009
Monday's Doctor Visit
Hello everyone,
Sorry to be posting two days after Ben's appointment but we have been exhausted and swamped with things to do!!!
Ben's Doctor Visit went well even though it took ALL DAY!!! Ugghhh, we left at 8am and got home at 6pm!! But luckily most of them will be much shorter!! We also took a break in the middle of the day to run a different errand so it was crazy but we made it through.
Okay so the test results came in for the M.B.R.(Micro Biological Resolution) This was the test I was telling you about on the micro cellular level. Negative is when there are less than .1% of luekemia cells in Ben's Bone Marrow. Negative is good and what we need to move on to phase two of his treatment!! The test came back Negative! What an answer to prayers!! We also want ben's ANC (ABSOLUTE NUETRIPHIL COUNT--- a multiplication of his white blood cells and nuetrophils) to be above 750 to move into phase two. His ANC was 1748!!!! Yeah we are finished with phase one and moving on to phase two.
They performed another spinal tap on ben to check his spinal fluid for leukemia cells and to inject another round of chemo into his spine. The purpose of this procedure and particular Chemo drug is to keep leukemia out of Ben's spine. If he gets it in his spinal fluid then we are looking at Radiation on his brain. So we are praising God that these spinal taps are still coming back negative.
We also recieved another prescription for a new Chemo drug so Ben is currently on three different medications, the first in his spine, the second in his blood stream through I.V. and now this new one that is a pill and he started that last night. So far he slept right through the night and didn't get sick but they say that reactions to Therapy happen 24-48 hours later so we will continue to pray that he does not have any bad reactions.
Ben's bone pain seems to have subsided for now. Thank you so much for your prayers in this because the poor little guy was suffering badly from it!! We are praying that he won't have many flair ups of this and that his pain will be minimal.
Ben is continuing to lose weight now that he is done with the steroid therapy!! He is feeling much better and every day able to get back to more and more activities that he is used to doing.
Ben's appointment's for October are the 5th, 12th, and 26th so I will be sure to post after to update you on how thing's are looking.
Thank you all
Jamie
Sorry to be posting two days after Ben's appointment but we have been exhausted and swamped with things to do!!!
Ben's Doctor Visit went well even though it took ALL DAY!!! Ugghhh, we left at 8am and got home at 6pm!! But luckily most of them will be much shorter!! We also took a break in the middle of the day to run a different errand so it was crazy but we made it through.
Okay so the test results came in for the M.B.R.(Micro Biological Resolution) This was the test I was telling you about on the micro cellular level. Negative is when there are less than .1% of luekemia cells in Ben's Bone Marrow. Negative is good and what we need to move on to phase two of his treatment!! The test came back Negative! What an answer to prayers!! We also want ben's ANC (ABSOLUTE NUETRIPHIL COUNT--- a multiplication of his white blood cells and nuetrophils) to be above 750 to move into phase two. His ANC was 1748!!!! Yeah we are finished with phase one and moving on to phase two.
They performed another spinal tap on ben to check his spinal fluid for leukemia cells and to inject another round of chemo into his spine. The purpose of this procedure and particular Chemo drug is to keep leukemia out of Ben's spine. If he gets it in his spinal fluid then we are looking at Radiation on his brain. So we are praising God that these spinal taps are still coming back negative.
We also recieved another prescription for a new Chemo drug so Ben is currently on three different medications, the first in his spine, the second in his blood stream through I.V. and now this new one that is a pill and he started that last night. So far he slept right through the night and didn't get sick but they say that reactions to Therapy happen 24-48 hours later so we will continue to pray that he does not have any bad reactions.
Ben's bone pain seems to have subsided for now. Thank you so much for your prayers in this because the poor little guy was suffering badly from it!! We are praying that he won't have many flair ups of this and that his pain will be minimal.
Ben is continuing to lose weight now that he is done with the steroid therapy!! He is feeling much better and every day able to get back to more and more activities that he is used to doing.
Ben's appointment's for October are the 5th, 12th, and 26th so I will be sure to post after to update you on how thing's are looking.
Thank you all
Jamie
Monday, September 21, 2009
GOD IS GOOD~~~~GOOD NEWS TODAY
Hello Everyone,
Today was Ben's first Clinic appointment since we were released from the hospital. It went so good. Ben's red blood and platelets were up in normal levels. He did not need a transfusion today we are so happy. His ANC (white blood cells mutiplied by his neutriphils) was 2912. The day we were released from the hospital it was 126!!!!!!!!!!!!!!!!!!!! PRAISE GOD!!!!!!!!!!!!!!!!!!!!!!!!! This is such good news for us, it indicates that everything is going so well. Ben had another spinal tap and another bone marrow asperation today also. We will not have the results for that until later today or early tomorrow. This will be his last bone marrow asperation for a while. They gave us a prescription for another Chemo drug today. We will fill this prescription today and bring it back to his appointment next week so they can instruct us on how to give it to him. This will be one that we do from home and he will still be recieving the weekly treatment of vinchristine (his current Chemo drug). Ben finished his steroid treatment on Saturday and he will now begin to drop back down to a normal weight. This will be good because it really has been making his day to day life a little more difficult also his mood swings will go away now that he is off the steroids.
So far the homeopathic remedies we have been using to boost Olivia's and our immune systems has been working well. She had a runny nose and we were a little worried but he gave us remedies for teething runny nose and allergies. The allergy medicine cleared up the runny nose and has not been back since :) We are also taking immune boosters to prevent us from getting sick so we don't spread anything to Benjamin.
Thank you so much for your prayers. Keep it up because the Lord is responding to your faithfulness!
Love Jamie
Today was Ben's first Clinic appointment since we were released from the hospital. It went so good. Ben's red blood and platelets were up in normal levels. He did not need a transfusion today we are so happy. His ANC (white blood cells mutiplied by his neutriphils) was 2912. The day we were released from the hospital it was 126!!!!!!!!!!!!!!!!!!!! PRAISE GOD!!!!!!!!!!!!!!!!!!!!!!!!! This is such good news for us, it indicates that everything is going so well. Ben had another spinal tap and another bone marrow asperation today also. We will not have the results for that until later today or early tomorrow. This will be his last bone marrow asperation for a while. They gave us a prescription for another Chemo drug today. We will fill this prescription today and bring it back to his appointment next week so they can instruct us on how to give it to him. This will be one that we do from home and he will still be recieving the weekly treatment of vinchristine (his current Chemo drug). Ben finished his steroid treatment on Saturday and he will now begin to drop back down to a normal weight. This will be good because it really has been making his day to day life a little more difficult also his mood swings will go away now that he is off the steroids.
So far the homeopathic remedies we have been using to boost Olivia's and our immune systems has been working well. She had a runny nose and we were a little worried but he gave us remedies for teething runny nose and allergies. The allergy medicine cleared up the runny nose and has not been back since :) We are also taking immune boosters to prevent us from getting sick so we don't spread anything to Benjamin.
Thank you so much for your prayers. Keep it up because the Lord is responding to your faithfulness!
Love Jamie
Monday, September 14, 2009
Sunday, September 13, 2009
Sunday
Hello Friends & Family,
Here I am at home on my own computer with Ben in my lap. We made cookies this morning, he had a bath, he took his many medicines like a very good boy. He had a wonderful night with us and we are excited to pick up Olivia tomorrow from Aunt Jill's. We miss her so much and Ben is very happy she will be coming home soon to see him.
Ben says he is very happy. He also said that his bath made him feel all better :). I think his bath made him smell better too. :) The hospital soap does not smell very good. He has been watching cartoons today and hanging out in his P.J.'s and snuggling with Daddy. What a blessed day to be home and feel a little bit of normalcy.
Ben's next Doctor's appointment and Chemo treatment should be one week from tomorrow. We are glad for a break for his sake. We are praying for no fevers or sickness that would bring us back to the hospital and Ben is very strong willed about going back to church. We will have to wait until his ANC( a calculation of his white blood count and his neutrophils) are about 250. Even then we will have to be very careful with handwashing and staying away from sick people but at least he will be able to get out of the house for a time.
Love you all,
Jamie
Here I am at home on my own computer with Ben in my lap. We made cookies this morning, he had a bath, he took his many medicines like a very good boy. He had a wonderful night with us and we are excited to pick up Olivia tomorrow from Aunt Jill's. We miss her so much and Ben is very happy she will be coming home soon to see him.
Ben says he is very happy. He also said that his bath made him feel all better :). I think his bath made him smell better too. :) The hospital soap does not smell very good. He has been watching cartoons today and hanging out in his P.J.'s and snuggling with Daddy. What a blessed day to be home and feel a little bit of normalcy.
Ben's next Doctor's appointment and Chemo treatment should be one week from tomorrow. We are glad for a break for his sake. We are praying for no fevers or sickness that would bring us back to the hospital and Ben is very strong willed about going back to church. We will have to wait until his ANC( a calculation of his white blood count and his neutrophils) are about 250. Even then we will have to be very careful with handwashing and staying away from sick people but at least he will be able to get out of the house for a time.
Love you all,
Jamie
Saturday, September 12, 2009
WE ARE FINALLY HOME!!!!!
We are home.....I am so excited I don't even know what to say!! Thank you all for your prayers that got us here.
I am adding two photos so you can all see how big Ben has gotten from the Steroids!! It is so funny he has gained nine pounds in three weeks. The nurses told us it comes off as fast as they put it on but it is really funny to watch him eat!! I put a picture of Ben from about a month ago and a picture from today!
Jamie
Thank you!!
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
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
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
Sunday, August 30, 2009
Sunday Evening
Yesterday Ben had another Platelet transfusion so he could have another lumbar puncture (spinal tap) where they would also inject his spinal fluid with another Chemo treatment & also so he could have another bone marrow asperation so they can assess how the Chemo is working. The Chemo made him tired and quiet again, he didn't really talk much and stayed in bed most of the day.
Today they tested all the levels in his blood and although his platets were in good numbers his red blood count was down very low again so they gave him a red blood transfusion this morning. He napped for several hours today and when he woke up he was rested and the transfusion was finished so he felt much better. We walked around our floor because he is not aloud of our floor without a mask and he didn't want to wear a mask. Honestly though I am glad he doesn't because I don't really want him wandering the hospital anyway :). They had to start giving him a stool softner because one of the Chemo drugs call Vinchristine really makes it hard for him to go. We are praying that we will be able to counteract this once we get home with a really good diet so that he will not have to be on stool softners all the time.
Olivia went to Uncle Tim and Aunt Carol's yesterday. Ben (denny) slept at the hospital with little Ben last night so Matt and I could spend the evening together with Olivia. I think it really helped her to have a night with us. Valerie picked her up this morning with Baby Jack and took her to church with her and then home with her for the night. I stayed with Ben today and Matt slept now I am going to rest tonight and Matt will stay the night with Ben tonight.
We are praying that we get to go home tomorrow. It all depends on insurance so pray for us. I think Ben will do much better when we get him home. He has told us several times now that he thinks he is in trouble and that is why he is not aloud to go home with Mama, Daddy and Sissy. It makes me sad that he doesn't understand but I am praying that God keeps him comforted when I cannot.
Matt and I wanted to thank everybody. It is so hard to even keep up with all the people praying, babysitting, bringing food, visiting Ben, do laundry, cleaning our house....just to name a few. I want you to know that we are grateful for every one of you and all that you do. We are thanking God daily for the blessing of love we are recieving from you. Thank you so much.
Jamie
Today they tested all the levels in his blood and although his platets were in good numbers his red blood count was down very low again so they gave him a red blood transfusion this morning. He napped for several hours today and when he woke up he was rested and the transfusion was finished so he felt much better. We walked around our floor because he is not aloud of our floor without a mask and he didn't want to wear a mask. Honestly though I am glad he doesn't because I don't really want him wandering the hospital anyway :). They had to start giving him a stool softner because one of the Chemo drugs call Vinchristine really makes it hard for him to go. We are praying that we will be able to counteract this once we get home with a really good diet so that he will not have to be on stool softners all the time.
Olivia went to Uncle Tim and Aunt Carol's yesterday. Ben (denny) slept at the hospital with little Ben last night so Matt and I could spend the evening together with Olivia. I think it really helped her to have a night with us. Valerie picked her up this morning with Baby Jack and took her to church with her and then home with her for the night. I stayed with Ben today and Matt slept now I am going to rest tonight and Matt will stay the night with Ben tonight.
We are praying that we get to go home tomorrow. It all depends on insurance so pray for us. I think Ben will do much better when we get him home. He has told us several times now that he thinks he is in trouble and that is why he is not aloud to go home with Mama, Daddy and Sissy. It makes me sad that he doesn't understand but I am praying that God keeps him comforted when I cannot.
Matt and I wanted to thank everybody. It is so hard to even keep up with all the people praying, babysitting, bringing food, visiting Ben, do laundry, cleaning our house....just to name a few. I want you to know that we are grateful for every one of you and all that you do. We are thanking God daily for the blessing of love we are recieving from you. Thank you so much.
Jamie
Friday, August 28, 2009
Friday Morning
Today we are hoping to get to go home so we will see how that works out. If we go home then Ben's next Bone Marrow Asperation (removing Marrow for testing) will be Monday. If we stay admitted today then they will do this tomorrow. He will not be put all the way under anymore they will be using conscience sedation(twilight). This sedation also keeps him from remembering what just happened and he wakes up very happy.
Friday Morning
Yesterday was a good day! Ben got a lot of rest that he needed, we asked to be moved to a different room that would be more quiet. The room we were in had an older boy who stayed up late so Ben wasn't really sleeping good at all. He took two naps yesterday and slept okay through the night. It is hard for him to sleep great because they come in every two hours to check his vitals and it usually wakes him up.
Ben had to have platelets last night because his count was low again. His NP (nuetraphils{white blood cells}) was only 30. They told us a child who is not sick with Leukemia would be above 5000!! He may or may not reach zero but either way he is immune system is really low right now.
My sister went home wednesday and my mom left monday. My dad is leaving this upcoming Monday and my Mother-in-law will be leaving on Sunday. We are so grateful they came to be with us it was such a blessing.
Yesterday we had to wait for the platelets because they had a shortage and could not get them to Ben right away. We found out that at times they do not have blood or platelets in the whole state and have to wait until they can be shipped. This worried us a bit and we are beginning to research more about blood drives or even just knowing if some people out there have the same blood type as Ben so we can call if needed. We are still learning about this so we will let you know if their is a need. They have let us know that they prefer that donors don't specify it for Ben only because blood is given expiration dates, but also if it is not specified for him then it can still be on shortage because the blood can be sent anywhere in the nation so we are not sure what we will do but the nurses told us that just in the last month they have had shortages that required blood to be shipped from another state. This only is a concern if Ben has any problems and needs an emergency transfusion if his levels are really low like when he was first admitted. Pray for us that God gives us the info we need on this. I will posting all the pictures on Facebook that Rita (mom-in-law) has taken since we have been in the hospital!
Thank you for your prayers!
Ben had to have platelets last night because his count was low again. His NP (nuetraphils{white blood cells}) was only 30. They told us a child who is not sick with Leukemia would be above 5000!! He may or may not reach zero but either way he is immune system is really low right now.
My sister went home wednesday and my mom left monday. My dad is leaving this upcoming Monday and my Mother-in-law will be leaving on Sunday. We are so grateful they came to be with us it was such a blessing.
Yesterday we had to wait for the platelets because they had a shortage and could not get them to Ben right away. We found out that at times they do not have blood or platelets in the whole state and have to wait until they can be shipped. This worried us a bit and we are beginning to research more about blood drives or even just knowing if some people out there have the same blood type as Ben so we can call if needed. We are still learning about this so we will let you know if their is a need. They have let us know that they prefer that donors don't specify it for Ben only because blood is given expiration dates, but also if it is not specified for him then it can still be on shortage because the blood can be sent anywhere in the nation so we are not sure what we will do but the nurses told us that just in the last month they have had shortages that required blood to be shipped from another state. This only is a concern if Ben has any problems and needs an emergency transfusion if his levels are really low like when he was first admitted. Pray for us that God gives us the info we need on this. I will posting all the pictures on Facebook that Rita (mom-in-law) has taken since we have been in the hospital!
Thank you for your prayers!
Wednesday, August 26, 2009
8-26-2009
By the way I forgot to tell you the Steroid that they gave Ben last Saturday he has to take for 28 days in a row. The biggest side effect is hunger and he ate the biggest breakfast today. I have no idea where he put all that food but it was good to see him eating again. He hasn't really had a normal appetite since we have been in here. :)
Also my son loves to let us know just how big his bowel movements are. Last night he said "Mom that was a big one! Good job for Ben!!" aaaahhh boys!!
Also my son loves to let us know just how big his bowel movements are. Last night he said "Mom that was a big one! Good job for Ben!!" aaaahhh boys!!
Wednesday Afternoon
I feel like I need to mention yet again how amazing our support has been. I am waking every morning with one of my first thoughts being of the huge numbers of prayers that are being made daily for Ben. Thank you so much.
Yesterday was a fairly easy day for Ben. Matt and I devoted the whole day to playing with him and cuddling with him. He was quiet but seemed to enjoy his day. The entire day was pretty uneventful until the evening. At six o'clock Ben had to have an injection in each thigh of his "P.E.G." another chemo drug. They numbed up his legs prior to the injection but he still felt them. He is a little champ though, took it like a man. I feel like my baby shouldn't have to take it so well but I am sure God is giving him a special strength reserved just for little ones. I know God is holding him tighter than me through this. Late in the night he told me he had to go potty and I got up and pulled back the covers and his sheets were soaked with blood. AAAGGGHH I ran into the hall probably white as a ghost and got the nurses. Ben had wiggled & tossed so much trying to go to sleep he had pulled a part his IV. Luckily they just had to clean it out and reattach the IV because he didn't pull out the needle. Then this morning the IV hose broke and they had to take out the needle in his port. But even though that wasn't the best we did make the best of it. I was able to give him a shower and let him stand in it as long as he wanted. Showers are comforting for him so he took a looooooooong one. They aren't going to hook a needle up for a couple of hours so he gets a long break were he doesn't have to be hooked up to any cords of any kind. Olivia came today to see him during the time were he wasn't hooked up so they got to play freely. We pulled them around on his floor in a wagon, then they walked around the floor out of the wagon. He was sad when she left but he was also tired from playing hard with her. It was good for him to see her.....Matt and I realized they have never been apart before. Poor guy he loves his "Sissy".
We are praying we get to go home soon!! Maybe tomorrow or the next day. It all depends on some paperwork getting done. Hopefully they won't take too much more time getting it done.
We love you all for your support!! Thank you for all the wonderful Birthday wishes....I had a surprise Serenade from some very special peoples....Matt brought in a cake and lit some candles and almost gave me a heart attack because the hospital has smoke detectors and I was afraid he would set off the sprinklers and get us in trouble :) Crazy Man!! Thank you EVERYONE!!
Yesterday was a fairly easy day for Ben. Matt and I devoted the whole day to playing with him and cuddling with him. He was quiet but seemed to enjoy his day. The entire day was pretty uneventful until the evening. At six o'clock Ben had to have an injection in each thigh of his "P.E.G." another chemo drug. They numbed up his legs prior to the injection but he still felt them. He is a little champ though, took it like a man. I feel like my baby shouldn't have to take it so well but I am sure God is giving him a special strength reserved just for little ones. I know God is holding him tighter than me through this. Late in the night he told me he had to go potty and I got up and pulled back the covers and his sheets were soaked with blood. AAAGGGHH I ran into the hall probably white as a ghost and got the nurses. Ben had wiggled & tossed so much trying to go to sleep he had pulled a part his IV. Luckily they just had to clean it out and reattach the IV because he didn't pull out the needle. Then this morning the IV hose broke and they had to take out the needle in his port. But even though that wasn't the best we did make the best of it. I was able to give him a shower and let him stand in it as long as he wanted. Showers are comforting for him so he took a looooooooong one. They aren't going to hook a needle up for a couple of hours so he gets a long break were he doesn't have to be hooked up to any cords of any kind. Olivia came today to see him during the time were he wasn't hooked up so they got to play freely. We pulled them around on his floor in a wagon, then they walked around the floor out of the wagon. He was sad when she left but he was also tired from playing hard with her. It was good for him to see her.....Matt and I realized they have never been apart before. Poor guy he loves his "Sissy".
We are praying we get to go home soon!! Maybe tomorrow or the next day. It all depends on some paperwork getting done. Hopefully they won't take too much more time getting it done.
We love you all for your support!! Thank you for all the wonderful Birthday wishes....I had a surprise Serenade from some very special peoples....Matt brought in a cake and lit some candles and almost gave me a heart attack because the hospital has smoke detectors and I was afraid he would set off the sprinklers and get us in trouble :) Crazy Man!! Thank you EVERYONE!!
Monday, August 24, 2009
Amazing Coincidence
I had to come down to post that the neatest thing happened just now. Dr. Wilson came in to see Matt and I. He is an endocronologist here at Phoenix Children's Hospital. He is from Matt's home town in Newton, MS. His cousin grew up in the house that Matt grew up in. He was a very sweet kind man who answered a lot of questions for us today (Ben will have to see a endocronologist later on during his treatment) . Another way God is letting us know he is with us. :)
8-24-2009
Today is my Birthday and I wanted to let you all know that I logged on to facebook and cannot believe how overwhelming it was to see all the birthday wishes. So overwhelming in fact that I feel like I must share with you my thoughts & prayers this morning.
For years now I have disliked my Birthday. I used to like it very much but then things kept happening around my Birthday that brought me down. My dear sweet nephew passed away one year and he was so special to many of us. A good friend of mine commited suicide two years after that. Last year Matt was diagnosed with his Cancer the day after my birthday and now everything with Ben. This was making sad this morning so I found a small window of quiet time this morning before I took my shower and got ready to go today. I prayed that God would begin to heal my hate for my Birthday and I need to tell you that he softened my heart today when I got my Birthday wishes on facebook. Thank you so much for the encouragement you guys are wonderful. I am looking forward to celebrating my birthday this evening in a little hospital room with my husband and my sweet, sweet baby boy!
I love you all so much!
Jamie
For years now I have disliked my Birthday. I used to like it very much but then things kept happening around my Birthday that brought me down. My dear sweet nephew passed away one year and he was so special to many of us. A good friend of mine commited suicide two years after that. Last year Matt was diagnosed with his Cancer the day after my birthday and now everything with Ben. This was making sad this morning so I found a small window of quiet time this morning before I took my shower and got ready to go today. I prayed that God would begin to heal my hate for my Birthday and I need to tell you that he softened my heart today when I got my Birthday wishes on facebook. Thank you so much for the encouragement you guys are wonderful. I am looking forward to celebrating my birthday this evening in a little hospital room with my husband and my sweet, sweet baby boy!
I love you all so much!
Jamie
Monday Afternoon
We got some good news this morning when we came in. The results of Ben's Lumbar Puncture (Spinal Tap) came back negative for Lukuemia cells. This is such an awesome answer to prayers because this means that we do not have to worry about treating Ben with Radiation to his brain. We feel like a weight has been lifted.
Also Matt has been doing some research and is learning more each day about Ben's particular type of Lukeumia. We originally were told that "ALL" type "PRE-B" has an 80-85% curability. Through Matt's research in the wonderful library at the hospital called the emily room, put in place for family's like us to research their childrens diseases, we have found out that the 85% is an overall average for children and adults. What we are learning is that this average means that adults have more like a 60% curability where children under the age of ten are place at 90.9%. I am sure you can imagine what good news this is to us. Every little percent is huge to us. So I ask that you Praise God today with the direction we believe he is taking us daily.
Ben is doing well today although he is still very tired he is tolerating the Chemo wonderfully. He is complaining of headaches so they gave him Tylenol this morning but so far has not had any nausea that we can tell and no vomiting. He is still not feeling very talkative or playful but he was teasing me playfully about an hour ago. He was wiping my kisses off his face and laughing when I went back to give him more.
So far his appetite is beginning to pick up. The Doctor let us know that one of the medications that he is on, a steroid, will greatly increase his appetite and to expect that he could gain 20-25 pounds while on this steroid.
It looks like we will not be released to go home with Ben tomorrow like it was originally planned. His blood pressure is still a little high and we want to be sure that he is okay. We are hoping for maybe Thursday or Friday.
I have a prayer request for all of you that are praying for us. I am a little nervous to take Ben home because we have many new routines to adjust to. I hope you will join me in my prayer that God will perform a miracle in me. Aside from general hygiene Ben will have many special routines throughout his day and I will be in watch for germ exposure for the next three years. Those of you who know me well know I can be extremely scatterbrained so I ask that God will bestow a grace to me to give me immediate help in this area. I want to be the best protector I can be for him to keep him from getting sick as much as possible. I also want to be as on top of things as I can be.
The Chemo Therapy will deplete Ben's immune system after each treatment the worst days for him will be between day 7-10 and he will be having weekly treatments for six months so he will have pretty much no immune system for the next half of a year. He will be given antibiotics every Saturday and Sunday for the next Three and a half years to help prevent a particular form of Pneumonia. I believe this will also help protect him from other exposure.
Thank you again for your prayers. I will never be able to say enough how much that I believe that God is honoring our faith and prayers on a daily basis to benefit Ben's outcome in this. I will never be able to tell you how much it means to me that I believe all of you are taking apart in his life with your prayers.
I am working on posting some pictures from the last few days but have limited resources for that here at the hospital.
Jamie
Sunday, August 23, 2009
I was unable to post yesterday because it was so hectic. Ben was scheduled for surgery Friday Morning to have a permanent IV port put in so that it would be easier for him to recieve fluids, transfusions & Chemo Therapy. He was also scheduled to have a Spinal tap and his first Chemo Therapy treatment injected directly into his Spinal column. This is to kill any Cancer cells that may be in his spine. He was also supposed to have another Chemo therapy medicine put into his IV port later Friday afternooon. During surgery his platelets were so low that they could only due the port IV they decided not to do the spinal tap and Chemo injection because they were worried that he would bleed into his spinal column.
Friday night my Mom was taking a shift so that Matt and I could go sleep in the hotel room. She took over at about 8:30pm, at this time ben's blood pressure was high and so Mom and the nurse promised to call if anything changed for the worse. Matt and I went to the hotel and spent the first time alone together privately that we have had since Monday. We prayed to together for Ben we asked God that he would heal our son and not take him from us. We both also told God that we know he is sovreign and that we want his will in this. We fell asleep around 10:30 and Mom called at 1:00am and said get down here as soon as you can. When we arrived they let us know that his blood oxygen levels dropped to 60(they are supposed to be above 90) and his blood pressure was very high. They moved him to the PICU(pediatric intensive care unit) they assured us this was precautionary and that they are able to monitor him better there. They took an Xray and discovered that he had fluid on his lungs they told us this was because of all the fluids he had been recieving. They also took swabs from his nose to test for virus' and infections. They put him on antibiotics just in case he does have these. We will not have results of the swabs for three days (monday). Ben and I fell asleep at about 4:30am Sat. morning and I woke up at about 7:00am. Ben was still asleep and they did another xray to see if the fluids in his lungs had gone down since they gave him medicine to make him pee it out. They also redrew his blood to test for any abnormalities. Matt and I left to go home and get some paperwork for the hospital and then we went to the hotel at about 2:00pm to get some sleep. During this time Benjamin had his spinal tap and his injection of Chemo in his spine. He woke up well from this procedure and had his other Chemo put in his IV port. We woke at about 7:30 because Aunt Jill and Uncle Kelly brought us some food. The Lord is good and that food made both of us feel so much better. We called my Dad and asked if my sister could stay the night so we could rest up. This morning (sunday) my Dad called and let us know that Ben was being moved back up to the 2nd floor. We have been with him at the hospital since about 9:30am. He is not feeling well(likely from the Chemo) so he is very quiet. He will not speak to me or look at me. At first I was saddened and thought maybe he felt betrayed that we slept away from him but a father of another child on our floor told me that this is normal from just having a chemo treatment. So I am asking God for the grace not to take it personally. I did cry at one point and he finally spoke to me and said "mama come here you need hugs & kisses" so see God answered my prayer. That is all Ben has chosen to say but it is enough for me. :)
Once again I need to tell all of you reading this that I am daily encouraged by just the sheer numbers of prayers and all the support we have recieved. Even through the good news we have a long road so please continue to pray for us. I can tell you that God is ever changing the course of Ben's road through your prayers.
Jamie
Friday night my Mom was taking a shift so that Matt and I could go sleep in the hotel room. She took over at about 8:30pm, at this time ben's blood pressure was high and so Mom and the nurse promised to call if anything changed for the worse. Matt and I went to the hotel and spent the first time alone together privately that we have had since Monday. We prayed to together for Ben we asked God that he would heal our son and not take him from us. We both also told God that we know he is sovreign and that we want his will in this. We fell asleep around 10:30 and Mom called at 1:00am and said get down here as soon as you can. When we arrived they let us know that his blood oxygen levels dropped to 60(they are supposed to be above 90) and his blood pressure was very high. They moved him to the PICU(pediatric intensive care unit) they assured us this was precautionary and that they are able to monitor him better there. They took an Xray and discovered that he had fluid on his lungs they told us this was because of all the fluids he had been recieving. They also took swabs from his nose to test for virus' and infections. They put him on antibiotics just in case he does have these. We will not have results of the swabs for three days (monday). Ben and I fell asleep at about 4:30am Sat. morning and I woke up at about 7:00am. Ben was still asleep and they did another xray to see if the fluids in his lungs had gone down since they gave him medicine to make him pee it out. They also redrew his blood to test for any abnormalities. Matt and I left to go home and get some paperwork for the hospital and then we went to the hotel at about 2:00pm to get some sleep. During this time Benjamin had his spinal tap and his injection of Chemo in his spine. He woke up well from this procedure and had his other Chemo put in his IV port. We woke at about 7:30 because Aunt Jill and Uncle Kelly brought us some food. The Lord is good and that food made both of us feel so much better. We called my Dad and asked if my sister could stay the night so we could rest up. This morning (sunday) my Dad called and let us know that Ben was being moved back up to the 2nd floor. We have been with him at the hospital since about 9:30am. He is not feeling well(likely from the Chemo) so he is very quiet. He will not speak to me or look at me. At first I was saddened and thought maybe he felt betrayed that we slept away from him but a father of another child on our floor told me that this is normal from just having a chemo treatment. So I am asking God for the grace not to take it personally. I did cry at one point and he finally spoke to me and said "mama come here you need hugs & kisses" so see God answered my prayer. That is all Ben has chosen to say but it is enough for me. :)
Once again I need to tell all of you reading this that I am daily encouraged by just the sheer numbers of prayers and all the support we have recieved. Even through the good news we have a long road so please continue to pray for us. I can tell you that God is ever changing the course of Ben's road through your prayers.
Jamie
Friday, August 21, 2009
The Beginning
Friends & Family,
I am actually finding it difficult to start this blog....where to begin? The past few days have been filled with fear, love, grace, awe.... I want to start this blog at the beginning so everyone can catch up to where we are today. I know some of you already know all of this but a lot of you do not so here we go.
Okay,
So Monday I called our Doctor to make an appointment for Ben, Olivia and Me. Our Primary reason was our concern for Ben. He had been pale, bruising easy and badly, two bloody noses, tired and a low grade fever. About two weeks prior we started noticing small things that progressively became more and more out of the ordinary. Bruising went from normal two and three year old bruises to slowly healing or worse than usual. A week ago this last Monday Ben got the flu with a low grade fever, congestion, cough, paleness & fatigue. Olivia and I also got sick with this flu and experienced the same symptoms with the exception of the paleness. Ben has always been a fair skinned boy but this was different he was losing colour. I say "losing" because it was not all at once. The fevers came and went but Ben's continued so I contacted the Doctor last friday(one week ago today) and they were closed. I called first thing this last Monday and asked if they could squeeze him in and they said okay so we got there at 10:00am and waited for the Doctor. When he came in and saw Ben he said that we needed to get Ben a blood test right away. I asked him if he thought Ben was anemic and he said that it was possible but he believed that he also needed to be tested for luekemia. He also said he would be testing for some chronic virus' that could cause the same symptoms but that he believed it was important to get the luekemia possiblilty addressed. I went in to get the kid's blood drawn and then took the kid's home with expected results in two-four days.
Tuesday started as a normal day. Got up at six am to get Matt out for work and to make the kids breakfast. Ben was acting fatigued but mostly normal ( he did not seem dangerously sick). I continued to work until about 1:00pm and I got a phone call from the lab asking for me. I was told that the lab had Ben's results back but that they were unable to reach the Doctor. I was also told that reaching the Doctor could not wait and that I needed to get Ben to the Emergency Room immediately that he was in serious danger. What kind of danger I did not know. The tech's exact words to the person making the call was "Call that Mom and tell her that baby needs to be in the emergency room right now". I made a couple phone calls while Sammy(our nanny) got shoes on the kids and threw together a bag. Sammy drove towards Estrella Banner until we were told to go to Phoenix Children's Hospital. We went straight there and Matt also headed straight there from work.
I called the lab tech back and asked if she could please fax the paperwork to PCH since we were headed there. She said yes and also told me to tell the admitting staff that Benjamin was in "Blast Crisis" neither she nor I knew what this meant but when I told the admitting staff "Blast Crisis" we were moved into a room in less than three minutes.
This is where the fear started...my Dad and Matt had looked up "Blast Crisis" online and found out that this is a term used for the Terminal stage of a kind of luekemia called CML. I was not informed of this because no one wanted to have me freaking out but initially it was thought that Ben had anywhere from hours to possibly days to live. THANK OUR BLESSED JESUS that this is not the case but I will get us to that place soon. Ben was looked at and then we were spoken too by a couple of Doctor's before we were taken to have his chest exrayed and given a room. Ben was admitted to PCH at about 4:00pm(2 hours after arriving). They re-did the blood tests and decided to start him on I.V.'s and also gave him a platelet transfusion and a red blood cell transfusion. Matt and I spent the night next to his bed and waited for my sister to get in at 9:30 that same night and my parents and brother to get in at 10:30 the following morning and my mother-in- law came at 4:30 the following afternoon. This brings us to Wednesday Morning. Ben had three blood transfusions the first night and had some pink color back by Wednesday Morning. At this time I was still unaware of the concern that he was Terminal. My father got in from the airport right before the oncologist came to visit us. The oncologist let us know that even though Ben's life had been at risk and he was indeed a very, very sick little boy he was not in "Blast Crisis" we in no way lay blame for the wrong initial info because we all believe that it saved his life by getting him in ASAP. We have been told by his doctor that had we not gotten him in when we did his blood count was so low that he would have shortly been dealing with his major organs shutting down and they believe that we would not have been able to recognize the danger before it was too late to do anything to save his life. PRAISE GOD!!!! We were told that even 12 hours more could have killed him!! PRAISE OUR MIGHTY AND KNOWING GOD!!
Dr. Henry is Ben's Oncologist and he let us know on Wednesday Morning that we were looking at either AML or ALL as the likely forms of Leukemia that Ben had. AML has curability rates of 50-70% and about six to eight months of Chemo therapy as form of treatment. ALL has curability rates of 70-85% and 3 and 1/2 years of Chemo Therapy as form of treatment. Both rarely need Bone-Marrow transplants!! My Dad cried out "PRAISE THE LORD" and I not knowing that there was fear of Ben possibly Dying soon just soaked in the information. By the way I must say I am glad I didn't know and my family made the right choice in not telling me this.
Yesterday at Noon Ben had a procedure called Bone-marrow Asperation. This means they removed some samples to test for exactly what type of Leukemia we were looking at. Yesterday at about 5:30 we were told that Ben has been diagnosed with ALL and a type called Pre-B!! PRAISE GOD!! We are looking at 80-85% curability. If we could have picked which one we wanted to end up with this would be it. His chances are the best in this situation!!
Now his treatment will consist of chemo therapy for the next three and a half years. Ben started today with a surgery to insert a IV port into his chest so he does not have to go through being stuck for an IV over and over for the next years to come. They also will be doing his first of many Spinal taps tomorrow. At this time they will also give him his first round of Chemo-Therapy....we have been assured that he will be feeling better in about 2 days!!! The Doctor's words were " he will seem like a new kid"
So there you have a very brief summary of the last few days. I would like to let you know all the many awesome ways that God has worked in this situation in so much detail but I will have to pace myself. I want you to know that I have a new friend who I now consider a family member who will forever be dear to my heart. If it were not for this person and her actions we have been informed that Ben would likely have died this week!! If she had not listened to GOD speaking to her heart my baby would most likely not still be with us. SHE SAVED HIS LIFE!!!!
I love you all and keep watching for more posts. Tomorrow is his first treatment of Chemo Therapy so I will keep you posted.
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