Sunday, September 26, 2010
Latest news!!!! Thanks Jeni!!!
We just got back from our check-up in Memphis, 9 months post treatment. I'm so glad to say that it was good news again with the MRI results, and there is no evidence of active disease! Wahoo! I was really scared this time... hoping and praying that there wouldn't be anything new growing. 1 day before we left, I heard that a girl with the same thing as Jude who was going through treatment the same time as us, has had her tumor grow back. Besides that, another family we lived next to was back at St Jude because their son's leukemia returned....and to top it all off, Michael, (27 yrs old) the guy in the picture with us from the last blog entry, suffered a hemmorage in one of his brain tumors and died. It was a really sad day for me to hear all of this. My heart goes out to those families. It's a huge reminder to be greatful for every day we have with our loved ones.
Jude had alot of check-ups while we were there, starting off with his two favorite nurses Mr. Ron and Mr. Ed. No problems with the IV, and Jude was a pro! He has gained almost 3 pounds since our last visit, and grew about a centimeter and a half. After seeing the endocrinologist, he said Jude is most likely going to need to start growth hormone shots soon, because the radiation has damaged the putuitary gland and Jude is hardly producing any. (This is something we were told before treatment started, I just wasn't sure when it would happen) We have to get on the ball with this before he starts puberty (which is going to begin early). Crazy stuff for me. For some reason, the growth thing really gets me the most. Even with the growth hormones, Jude will never reach his height that he would've been before all of this. He's going to be significantly smaller. But that's ok.....I'm just so happy he's here and doing so well right now!
His eyes were checked, and it appears that his eye is crossed from adapting to the muscles damaged during the tumor operation. If this is the case, then Jude will have glasses and it may be corrected in 4 or 5 years down the line.
Mr. Terry, Jude's physical therapist, was pretty happy with Jude's progress. He has a pretty steady gait and at this time, the main focus should be getting Jude's balance increased. His speech has improved as well and Mrs. Angela was very impressed! Mrs. Laura won't be here any longer because she is expecting a baby and moving, so we will be sad to see her go...but she said Jude is doing well also.
Finally, Jude was given a pretty thorough cognitive test, because the chemo and radiation can lower brain function over time so that it makes it harder for Jude to learn. I don't have the complete results yet, but I was happy to hear that they said Jude was a very hard worker, no attention problems, and he has a high tolerance for frustration. (At home though, is another story! haha!)
All in all, it is such good news! Now, Jay and I are going to focus on keeping Jude as healthy as possible, and putting him on some natural things that will hopefully prevent any future tumor growth.
Thank you everyone for caring so much about Jude! We really love you all!
Jude had alot of check-ups while we were there, starting off with his two favorite nurses Mr. Ron and Mr. Ed. No problems with the IV, and Jude was a pro! He has gained almost 3 pounds since our last visit, and grew about a centimeter and a half. After seeing the endocrinologist, he said Jude is most likely going to need to start growth hormone shots soon, because the radiation has damaged the putuitary gland and Jude is hardly producing any. (This is something we were told before treatment started, I just wasn't sure when it would happen) We have to get on the ball with this before he starts puberty (which is going to begin early). Crazy stuff for me. For some reason, the growth thing really gets me the most. Even with the growth hormones, Jude will never reach his height that he would've been before all of this. He's going to be significantly smaller. But that's ok.....I'm just so happy he's here and doing so well right now!
His eyes were checked, and it appears that his eye is crossed from adapting to the muscles damaged during the tumor operation. If this is the case, then Jude will have glasses and it may be corrected in 4 or 5 years down the line.
Mr. Terry, Jude's physical therapist, was pretty happy with Jude's progress. He has a pretty steady gait and at this time, the main focus should be getting Jude's balance increased. His speech has improved as well and Mrs. Angela was very impressed! Mrs. Laura won't be here any longer because she is expecting a baby and moving, so we will be sad to see her go...but she said Jude is doing well also.
Finally, Jude was given a pretty thorough cognitive test, because the chemo and radiation can lower brain function over time so that it makes it harder for Jude to learn. I don't have the complete results yet, but I was happy to hear that they said Jude was a very hard worker, no attention problems, and he has a high tolerance for frustration. (At home though, is another story! haha!)
All in all, it is such good news! Now, Jay and I are going to focus on keeping Jude as healthy as possible, and putting him on some natural things that will hopefully prevent any future tumor growth.
Thank you everyone for caring so much about Jude! We really love you all!
Thursday, July 8, 2010
This just in! (Well....as of June 30th.) =)
Just got back from Jude's 6 month check-up in Memphis, and it's good news again! No evidence of cancer....Wahoo! All the remaining areas that were once tumors are just scar tissue slowly eliminating itself. Nothing new has grown. In his physical therapy, occupational therapy, and speech therapy evaluations, he has improved also. No hearing test this time, but again we were reminded about protecting his ears from loud noises. All his labwork looks good as well. He had a pill swallowing session with the psychologist, and he is now able to swallow pretty large gel capsules! He learned to do this in about 15 minutes like he's been doing it all his life. (Amazing what he can do when he knows he's going to get a new rock!) He has gained about a pound and a half since our last check up 3 months ago, and grew about half an inch. He still needs his weight gain shakes, but his appetite has improved slightly, which is good. We are so happy and grateful for all the progress he has made! This time last year, he was barely beginning to take his first steps and trying to walk again and we were preparing to begin the chemo portion of his treatment at St. Jude. He's come a long way, and we are so happy he is doing so well. St. Jude is a wonderful place. Thankyou so much for every single one of your prayers and caring thoughts! Love you all very much!!
Tuesday, July 6, 2010
Tuesday, March 23, 2010
An update from Jeni...
Jude had his first 3 month check up MRI of the brain and spine today. Everything is good! The spine is still clear and disease free. The brain is still not totally clear, the one tiny spot that is left may be just dead tissue, they aren't sure. But it is less conspicuious, or I guess you could say it's smaller than before. As long as it isn't growing, it is good news. I asked the doc if that meant he is in remission, but since they don't know if that spot is a tumor or just dead tissue, they can only say he has no active disease. So, since he has had radiation, our hope is that the spot, whatever it is, will continue to shrink until nothing is there....or at least just never get bigger!
He also had a bit more hearing loss in the high frequency range. But not too significant as of yet. Kidneys and other organs are functioning normally, and he has improved also in speech, and in moving and balance. Still have a way to go, though.
The doctors are still going to watch his weight with weekly weigh-ins at his pediatrician in CA. His appetite is still very low, and they say that could continue for months. He has to continue the high calorie shakes for now, but if his weight drops, then they may put him back on the steroids. We hope not, because there are long term side effects with those that we'd like to avoid.
They are going to check his thyroid to see if it is functioning ok, and also his bones to see if they are growing.
It is really nice to see all our favorite doctors and nurses again. They are so wonderful here! We are so glad to have such a great team caring for Jude.
Thank you again all of you...each and every one of you... for your continued prayers and caring thoughts! We love you!
He also had a bit more hearing loss in the high frequency range. But not too significant as of yet. Kidneys and other organs are functioning normally, and he has improved also in speech, and in moving and balance. Still have a way to go, though.
The doctors are still going to watch his weight with weekly weigh-ins at his pediatrician in CA. His appetite is still very low, and they say that could continue for months. He has to continue the high calorie shakes for now, but if his weight drops, then they may put him back on the steroids. We hope not, because there are long term side effects with those that we'd like to avoid.
They are going to check his thyroid to see if it is functioning ok, and also his bones to see if they are growing.
It is really nice to see all our favorite doctors and nurses again. They are so wonderful here! We are so glad to have such a great team caring for Jude.
Thank you again all of you...each and every one of you... for your continued prayers and caring thoughts! We love you!
And we have more pics!!! =)
Therapy Dogs
Playing Super Chex!! At the Grizzly House
Pink Palace...he loves this place!
Jude's doctors
Families returning home.... There's Louisana Tim (wife Tanya in blue) in the shades!!
Wednesday, January 6, 2010
Finally an update! They are home!!!!!
Let people know that we are home ( i don't think everyone knows ) and that Jude is eating and doing well. He is off the steroids now, and his appetite is slowing down, but he is still eating and has gained a few pounds. His eyelashes and eyebrows are growing back too. In March we will get another MRI and see how things look. I want to say thankyou again so very much to everyone who came to visit, and for all the kind gifts that we recieved, and for all the many thoughts and prayers from all of you. You have no idea how much we appreciate it and how much it has helped us get through this difficult time. I really can't even put into words how thankful we are. What a tremendous blessing it is to have so much love shown to us... Thankyou!!!
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