As our Christmas festivities come to a close I just wanted to say Merry Christmas! There is no comparison between this year and last year. Last year Aaron was in the hospital on Christmas and I was pretty much a wreck! It was a pretty bad couple of days to say the least. I was just reading an update Damon did last year on New Years Day, and at that time Aaron's pain was unmanageable and we were so worried about the operation on his leg. What a difference a year makes! He has absolutely no pain, and doesn't even remember when he did. This time last year I couldn't imagine life being normal, yet today was a very normal day all things considered. Aaron got a Wii for Christmas from his "Nonni", and he was playing Wii and laughing and playing like nothing had ever happened. What a wonderful gift! We made animal-shaped cookies for Santa last night, and Aaron was so excited to get the stuffed Beluga whale he has been asking for.
It is still a little surreal at times what happened this past year, and there are times that even though things are great there is sadness. I think those of you who have gone through this with a child know what I mean, but it is hard to explain why there could be sadness even though things are good. That is why I am glad to have my online Ewing's support group - everything is understood. I am so thankful and happy for how well Aaron is doing, but I guess part of me is changed forever from the experience and living with the fear of recurrence. It's not bad necessarily - just different.
Tomorrow is another day of celebrating with my side of the family, and I am so happy for another fun day with family. I know it is a bit of a cliche, but I am trying to remember that Jesus is the reason for this season, and to spend a bit of quiet time in the midst of the hustle and bustle to remember what He has done in my life. We are so very thankful to all of you for your prayers and encouragement through this journey!
Friday, December 25, 2009
Tuesday, December 8, 2009
Clear ct scan
Clear ct scan
Aaron had a long day at the hospital today getting a chest ct scan, ekg, xrays and bloodwork, and then we met with Dr. Watanabe and found out that the ct scan was clear. Yea! I was very thankful that we could meet the same day instead of having to wait for results. I was concerned about not doing the PET scan, but he was able to explain to me that the isotope used in the PET would all go to the healing area in his leg and it wouldn't be an accurate scan. No use exposing him to more radiation without the benefit of an accurate scan, so he wants to postpone that until March when we will also do a bone scan and full body/brain MRI. Since the lungs are the greatest area of concern the clear scan today is a good indicator that he is cancer-free.
He has had tons of fun lately, including a ride on an ELEPHANT on Saturday at the City of Surprise holiday party. That same festival included an evening of fireworks and carnival rides which he thought was fantastic!
We will get the blood work info in a few weeks and that will indicate whether or not his blood system is improving well enough or if he will need to get another infusion of his stem cells. Obviously we are praying that it will rebuild well on it's own and we can save those cells for if we need them in the future.
Thanks!
Barbara
Aaron had a long day at the hospital today getting a chest ct scan, ekg, xrays and bloodwork, and then we met with Dr. Watanabe and found out that the ct scan was clear. Yea! I was very thankful that we could meet the same day instead of having to wait for results. I was concerned about not doing the PET scan, but he was able to explain to me that the isotope used in the PET would all go to the healing area in his leg and it wouldn't be an accurate scan. No use exposing him to more radiation without the benefit of an accurate scan, so he wants to postpone that until March when we will also do a bone scan and full body/brain MRI. Since the lungs are the greatest area of concern the clear scan today is a good indicator that he is cancer-free.
He has had tons of fun lately, including a ride on an ELEPHANT on Saturday at the City of Surprise holiday party. That same festival included an evening of fireworks and carnival rides which he thought was fantastic!
We will get the blood work info in a few weeks and that will indicate whether or not his blood system is improving well enough or if he will need to get another infusion of his stem cells. Obviously we are praying that it will rebuild well on it's own and we can save those cells for if we need them in the future.
Thanks!
Barbara
Lots to be thankful for! (Posted Nov 24, 2009)
Lots to be thankful for!
As we are approaching Thanksgiving I thought I'd do an update and just let you know how everything is going. Aaron is doing very well - he is still not allowed to put weight on his leg but he is happy and always in cheerful spirits. We've had lots of fun activities - he went on a train ride on Halloween with other kids from PCH and Make a Wish, he has had lots of time with his two cousins playing and doing crafts, and has made a friend on our street that he adores. I posted two pictures - one of us with the Make A Wish wish granters and one at the splash pad that was a good picture of Ben doing what he loves. I posted an update about Make-A-Wish but I don't think it got distributed. If you look at that one there are more pictures.
Ben is making great progress after going through the JumpStart program and I think we are on the right track. It is a constant fight for services for him due to the state budget cuts, so please pray that I can get him what he needs. It is being decided right now if he qualifies for a program that would really get him the therapy he needs, but it isn't looking good. He still has no functional speech so it frustrates me that this is even a fight.
Speaking of Ben, he has contracted what they suspect is H1N1 so he and I are home and Aaron is spending the days away. They put them both on Tamiflu, and obviously it is a big prayer request that Aaron doesn't get this. So far I am fine, and I am going to try to get on Tamiflu as well today. Poor Ben is pretty miserable, but hanging in there.
Aaron has scans coming up in a couple of weeks so I am going through my usual anxiety this time compounded because his doctor doesn't want to do the PET scan. I was given a protocol from that doctor that included PET every three months for the first year post treatment, so I'm not sure what has caused this change. I'm going in next Monday and I'll push for it then, because a ct scan of his chest and xray of the lung won't tell us if there is a tumor somewhere else. Crazy! I am learning how to fight for my kids through all of this for sure!
Damon always says that I leave messages that are too "cheery" and don't tell the bad stuff. I think I do, but I will be transparent and just ask for prayer for our family. I think the wear and tear of both boys having medical issues has worn us down and with the financial problems that have been created through it all some days are pretty bad. Ben is progressing, but autism is difficult on a family because it can limit normal activities because of the behavioral issues, etc. Please pray for our marriage that we can stay unified and connected, and for me that I won't be as anxious and can somehow keep my sanity!
Looking forward to Christmas at HOME this year, and making it a special and magical time for the boys. Wishing you all a very wonderful Thanksgiving Day and I'll check in with scan reports soon.
Thanks,
Barbara
As we are approaching Thanksgiving I thought I'd do an update and just let you know how everything is going. Aaron is doing very well - he is still not allowed to put weight on his leg but he is happy and always in cheerful spirits. We've had lots of fun activities - he went on a train ride on Halloween with other kids from PCH and Make a Wish, he has had lots of time with his two cousins playing and doing crafts, and has made a friend on our street that he adores. I posted two pictures - one of us with the Make A Wish wish granters and one at the splash pad that was a good picture of Ben doing what he loves. I posted an update about Make-A-Wish but I don't think it got distributed. If you look at that one there are more pictures.
Ben is making great progress after going through the JumpStart program and I think we are on the right track. It is a constant fight for services for him due to the state budget cuts, so please pray that I can get him what he needs. It is being decided right now if he qualifies for a program that would really get him the therapy he needs, but it isn't looking good. He still has no functional speech so it frustrates me that this is even a fight.
Speaking of Ben, he has contracted what they suspect is H1N1 so he and I are home and Aaron is spending the days away. They put them both on Tamiflu, and obviously it is a big prayer request that Aaron doesn't get this. So far I am fine, and I am going to try to get on Tamiflu as well today. Poor Ben is pretty miserable, but hanging in there.
Aaron has scans coming up in a couple of weeks so I am going through my usual anxiety this time compounded because his doctor doesn't want to do the PET scan. I was given a protocol from that doctor that included PET every three months for the first year post treatment, so I'm not sure what has caused this change. I'm going in next Monday and I'll push for it then, because a ct scan of his chest and xray of the lung won't tell us if there is a tumor somewhere else. Crazy! I am learning how to fight for my kids through all of this for sure!
Damon always says that I leave messages that are too "cheery" and don't tell the bad stuff. I think I do, but I will be transparent and just ask for prayer for our family. I think the wear and tear of both boys having medical issues has worn us down and with the financial problems that have been created through it all some days are pretty bad. Ben is progressing, but autism is difficult on a family because it can limit normal activities because of the behavioral issues, etc. Please pray for our marriage that we can stay unified and connected, and for me that I won't be as anxious and can somehow keep my sanity!
Looking forward to Christmas at HOME this year, and making it a special and magical time for the boys. Wishing you all a very wonderful Thanksgiving Day and I'll check in with scan reports soon.
Thanks,
Barbara
Monday, November 2, 2009
Make-A-Wish and more!
(October 28, 2009 Post)
Wow, it's been a busy week or two! First, we had the Mayo Clinic Bone Marrow Transplant team reunion dinner. This was held at the Hall of Flame Museum and it was a very nice evening. It was great to see the doctors and nurses who were with us through such an emotionally intense time. Then the Make-A-Wish wish granters came and brought a little party to our house and Aaron asked to go to the Disney Animal Kingdom and Disney World. We will spend six nights in Orlando at the Give Kids the World resort and have passes to Disney venues and SeaWorld. Give Kids the World is only for wish kids and it is a really fantastic place. They will give us money for food and souvenirs, so it truly is a free trip. We are hoping to go in February after Aaron's fifth birthday.
Aaron is having surgery on November 2 to have his port removed. It is a quick procedure and thankfully outpatient.
We have been having lots of good times lately including a day trip to Sedona. He is really doing well with not being able to walk and just gets around by scooting or using the walker. He will have another xray in one month to reevaluate if he can start bearing weight again.
Ben started back to the JumpStart program today and he did very well and is using words more. He is still not truly communicating just imitating, so please pray that soon this will all click for him.
Here are some pics from the dinner and the Wish party.
Make A Wish Party:
Mayo Clinic Bone Marrow Transplant team reunion dinner:
Wow, it's been a busy week or two! First, we had the Mayo Clinic Bone Marrow Transplant team reunion dinner. This was held at the Hall of Flame Museum and it was a very nice evening. It was great to see the doctors and nurses who were with us through such an emotionally intense time. Then the Make-A-Wish wish granters came and brought a little party to our house and Aaron asked to go to the Disney Animal Kingdom and Disney World. We will spend six nights in Orlando at the Give Kids the World resort and have passes to Disney venues and SeaWorld. Give Kids the World is only for wish kids and it is a really fantastic place. They will give us money for food and souvenirs, so it truly is a free trip. We are hoping to go in February after Aaron's fifth birthday.
Aaron is having surgery on November 2 to have his port removed. It is a quick procedure and thankfully outpatient.
We have been having lots of good times lately including a day trip to Sedona. He is really doing well with not being able to walk and just gets around by scooting or using the walker. He will have another xray in one month to reevaluate if he can start bearing weight again.
Ben started back to the JumpStart program today and he did very well and is using words more. He is still not truly communicating just imitating, so please pray that soon this will all click for him.
Here are some pics from the dinner and the Wish party.
Make A Wish Party:
Mayo Clinic Bone Marrow Transplant team reunion dinner:
Friday, October 16, 2009
Trying to Surprise Damon
Hi all,
Tuesday October 20th U2 is coming to University of Phoenix stadium for a big concert. Any of you who know Damon know that to say he is a fan is to put it mildly. He has a concert ticket, and actually HopeKids is offering tickets as well, but I am hoping that someone with some connection to the stadium may be able to get him a backstage pass or meet and greet time. I know this is a shot in a million, but it would be a pretty amazing thing for him, and sometimes I try to be a nice wife and do something cool. Not often enough, but occasionally!
Barbara
Tuesday October 20th U2 is coming to University of Phoenix stadium for a big concert. Any of you who know Damon know that to say he is a fan is to put it mildly. He has a concert ticket, and actually HopeKids is offering tickets as well, but I am hoping that someone with some connection to the stadium may be able to get him a backstage pass or meet and greet time. I know this is a shot in a million, but it would be a pretty amazing thing for him, and sometimes I try to be a nice wife and do something cool. Not often enough, but occasionally!
Barbara
Wednesday, October 7, 2009
Surgery success
This update is coming a little delayed. According to Dr. Seidel
and the anesthiesologist, the procedure went perfect. They found
what was expected and replaced the 2 previous screws in the graft
with 4 new ones. Aaron is resting and only has a little pain. He'll
be monitored overnight and come home tomorrow or Friday at the
latest.
and the anesthiesologist, the procedure went perfect. They found
what was expected and replaced the 2 previous screws in the graft
with 4 new ones. Aaron is resting and only has a little pain. He'll
be monitored overnight and come home tomorrow or Friday at the
latest.
Aaron is in Surgery Now
Aaron in surgery now...
Should last about 2 hours. He was a little upset this time outside the O.R. Barbara had to peel him from my arms he was holding on so tight. It was actually a really nice feeling that he was holding so tight.
Aaron is really vulnerable to illness at the hospital. We're praying he doesn't catch anything, especially c.diff.
More to come...
Damon.
Should last about 2 hours. He was a little upset this time outside the O.R. Barbara had to peel him from my arms he was holding on so tight. It was actually a really nice feeling that he was holding so tight.
Aaron is really vulnerable to illness at the hospital. We're praying he doesn't catch anything, especially c.diff.
More to come...
Damon.
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