Rassie is coming up on the 6 month mark since he started his Gleevec. All I can say is 'WOW'. These last 5 months have really flown. Of course its been a little longer than that since we found out Rassie had leukemia and was diagnosed with CML. September 25, 2009 will be forever etched in our minds.
I remember it like it was yesterday. It was a beautiful day outside. The bright sun, the warm air. Just beautiful. Rassie went in for a routine appointment that morning and it turned into labs and stat CT scan set for later that day. We were waiting for the results of the labs to see if Rassie had to be admitted to the hospital through the ER. We weren't sure why at this point.
I remember Rassie getting ready to head out the door for his CT scan when my cell phone rang and it was Dr. R. She told me Rassie's white count was extremely high and he needed to skip the CT scan and go ahead to the ER to be admitted. I asked about the high white count being an infection and Dr. R told me "No" . With counts this high it was something more serious but we would have to wait until we got to the hospital to find out.
Rassie went ahead of me while I waited for my little brother and then my mom to get here and watch the kids. I wasn't 10 minutes behind him. But in that short time Dr. R had already been in and given the diagnoses. When I arrived she came back in and gave it all over again. I remember hugging and crying with Rassie after she left the room.
There were so many questions and not enough answers. Dr. R was only a resident and wasn't allowed to give us the answers we wanted. We had to wait an ENTIRE night before we finally got to speak with the staff oncologist. As scary as leukemia sounded, Dr. H eased my fears and gave me great hope that things would be ok.
The few days Rassie spent in the hospital getting his white blood count under control felt like a lifetime. His counts were dropping and that was great. The doctors kept saying he would get to go home in a few days. The nurses kept saying he would be there a while with counts that high. Rassie's count started at 358,000 and normal count ranged from 4,000 - 10,000. I prayed everyday that God would bring Rassie home to the kids and I. And He did. God is good.
Rassie has been very Blessed with how his body has handled the Gleevec. After all, it is chemo. It just comes in the form of a pill. Thank you God for keeping my love strong through it all.
God Bless
Wednesday, April 28, 2010
Tuesday, April 27, 2010
Walking
Rassie hasn't used a wheel chair in a week! You have no idea just how exciting this is to us. Rassie is walking all over the place. It's funny to think about it but he and Lane are going through milestones together. Lane learned to crawl and Rassie is learning to walk. Both my boys are making me proud.
Rassie is also seeing things from a whole new perspective all over again. I guess I never realized just how much you miss when you're sitting in a wheel chair. He feels like he's able to do and see more now that he's up on his feet again. Rassie is seeing things that are on higher shelves and such that have been there for months but he just never noticed on his level. Now that he's standing and can see over alot of things he's always asking "did you know this was here?" "how long has this been like that?" etc. Everytime he discovers something new it makes me smile.
Rassie's new brace is serving him well. The wires on it were tightened a little too much and screws not enough, so the lock wouldn't stay released when he needed to bend his leg. Made it through the weekend just fine though, seeing as the brace has 2 different lock releases. We went in today and CPO had it fixed in less than 30.
For now he has a return appointment to S&W: Physical Medicine and Rehabilitation Dept. on May 5th. Dr. F had requested a 3-4 week return apointment but was all booked up. So it was a 2 week or 6 week return and the receptionist opted for the 2 week.
S&W: Physical Therapy Dept. submittied a requested for extended PT therapies. Another 12 sessions end May 5th. Can you believe by this time next Wednesday Rassie will have undergone 24 phyiscal therapy sessions? By the end of the first 12 sessions Rassie had learned to walk with a walker. By the end of this 12 sessions Rassie has received his brace and learned to walk with a cane. I am hoping that by the end of the next sessions (is approved) Rassie will be walking without the cane! Optimisim is a great medicine and I'm glad God has showed me how to keep the faith.
On another note, we are considering getting a stationary bicycle for Rassie. It needs to be one with heel a support along with the strap that goes across the top of the foot to help keep his right foot in place. It will help with the movement in Rassie's right leg. The one he can't feel. The movement and rotation will help move and flex those muscles and joints such as the ankles and knees that don't get any movement without help. Hoping that we can find one for a reasonable price. Or if you know of anyone selling one let us know.
Thanks for your continued support.
Good Night & God Bless
Rassie is also seeing things from a whole new perspective all over again. I guess I never realized just how much you miss when you're sitting in a wheel chair. He feels like he's able to do and see more now that he's up on his feet again. Rassie is seeing things that are on higher shelves and such that have been there for months but he just never noticed on his level. Now that he's standing and can see over alot of things he's always asking "did you know this was here?" "how long has this been like that?" etc. Everytime he discovers something new it makes me smile.
Rassie's new brace is serving him well. The wires on it were tightened a little too much and screws not enough, so the lock wouldn't stay released when he needed to bend his leg. Made it through the weekend just fine though, seeing as the brace has 2 different lock releases. We went in today and CPO had it fixed in less than 30.
For now he has a return appointment to S&W: Physical Medicine and Rehabilitation Dept. on May 5th. Dr. F had requested a 3-4 week return apointment but was all booked up. So it was a 2 week or 6 week return and the receptionist opted for the 2 week.
S&W: Physical Therapy Dept. submittied a requested for extended PT therapies. Another 12 sessions end May 5th. Can you believe by this time next Wednesday Rassie will have undergone 24 phyiscal therapy sessions? By the end of the first 12 sessions Rassie had learned to walk with a walker. By the end of this 12 sessions Rassie has received his brace and learned to walk with a cane. I am hoping that by the end of the next sessions (is approved) Rassie will be walking without the cane! Optimisim is a great medicine and I'm glad God has showed me how to keep the faith.
On another note, we are considering getting a stationary bicycle for Rassie. It needs to be one with heel a support along with the strap that goes across the top of the foot to help keep his right foot in place. It will help with the movement in Rassie's right leg. The one he can't feel. The movement and rotation will help move and flex those muscles and joints such as the ankles and knees that don't get any movement without help. Hoping that we can find one for a reasonable price. Or if you know of anyone selling one let us know.
Thanks for your continued support.
Good Night & God Bless
Friday, April 23, 2010
Quick Update
Rassie is doing great. His next lab draw is Monday the 26th. And his next oncology appointment is scheduled for June 2nd.
Physical therapy is going great. Rassie is doing AWESOME. And he also had a PM&R appointment Wednesday with Dr. F. Rassie has upgraded from a walker to a cane and is using the wheel chair less and less. This is so amazing! And I love not having to load the wheel chair everytime we go somewhere! He still lacks feeling from his knee down in his right leg but is making improvement movement wise. Rassie can now feel the bottom of his left foot but not the top and his left leg is a little patchy with feeling from the knee down. The knot on Rassie's back is still present. I wish that ugly thing would just go away already! When it finally decides to dissolve itself , Rassie's nerves will start functioning more properly and he'll have even greater improvement. Dr. F was very happy with the way things are going. So are we. I told Rassie we just have to keep pushing through. Each time he has a new appointment and shows improvement he are just one step closer to reaching his ultimate goal.
Rassie's leg brace finally came today. I will ultimately have to take a picture because I cannot describe it very well. It's two big pieces of "plastic" that form to his thigh and lower legs. It velcros on and has a hinge on each side of the knee. Rassie wears some type of big cotton leg sock under it. He is able to lock and unlock when he needs to bend or straighten his knee. This afternoon was his first time wearing it. His only complaint so far is that it doesn't stay unlocked or he hasn't figured out how to keep it that way so we're going to make a phone call on Monday to get it figure out.
I know Rassie is so excited to be up standing and walking, cane and all. He's loving it and why wouldn't he be? This is a very big milestone for our entire family. I am very proud of my husband and I thank God everyday for what He has done for us. I now know and trust that God will never give us more than we can handle. He does however present us with things in life that will make us stronger. We just have to have faith and keep faith. Our God is and awesome God!
Physical therapy is going great. Rassie is doing AWESOME. And he also had a PM&R appointment Wednesday with Dr. F. Rassie has upgraded from a walker to a cane and is using the wheel chair less and less. This is so amazing! And I love not having to load the wheel chair everytime we go somewhere! He still lacks feeling from his knee down in his right leg but is making improvement movement wise. Rassie can now feel the bottom of his left foot but not the top and his left leg is a little patchy with feeling from the knee down. The knot on Rassie's back is still present. I wish that ugly thing would just go away already! When it finally decides to dissolve itself , Rassie's nerves will start functioning more properly and he'll have even greater improvement. Dr. F was very happy with the way things are going. So are we. I told Rassie we just have to keep pushing through. Each time he has a new appointment and shows improvement he are just one step closer to reaching his ultimate goal.
Rassie's leg brace finally came today. I will ultimately have to take a picture because I cannot describe it very well. It's two big pieces of "plastic" that form to his thigh and lower legs. It velcros on and has a hinge on each side of the knee. Rassie wears some type of big cotton leg sock under it. He is able to lock and unlock when he needs to bend or straighten his knee. This afternoon was his first time wearing it. His only complaint so far is that it doesn't stay unlocked or he hasn't figured out how to keep it that way so we're going to make a phone call on Monday to get it figure out.
I know Rassie is so excited to be up standing and walking, cane and all. He's loving it and why wouldn't he be? This is a very big milestone for our entire family. I am very proud of my husband and I thank God everyday for what He has done for us. I now know and trust that God will never give us more than we can handle. He does however present us with things in life that will make us stronger. We just have to have faith and keep faith. Our God is and awesome God!
Rassie walking back from checking the mail!
God Bless & Good Night
Tuesday, April 13, 2010
SO PROUD
Great Strides make for a proud wife! I love Rassie so much and he's doing so great. The Gleevec seems to be our miracle drug! Who would have thought going through chemo could be so easy. DO NOT get me wrong. The Gleevec is not a miracle drug for everyone. And not everyone breezes through using it without the dreaded side effects. Rassie has been lucky to have such minimal side effects and I feel that we have been very Blessed by this. God is Great! Rassie has monthly labs at the end of April and May and his next oncology appointment is June 2nd. I am so glad his appointments are few and far between. It's always a good sign when you don't have to spend countless days at the hospital for appointments like these. We're there enough as it is for his work related injury! Rassie also has an upcoming appointment with his primary just to see how everything is going in general and then with Dr. F to review his PT and see where he is with getting back to his old self.
Speaking of braces! Rassie's should be finished by the end of this week or early next week. The anticipation is getting to me! I guess you could say its a fancy brace with all the bells and whistles. It will be one that locks into to place to keep his knee locked and in place for him to walk. Once he gets some feeling and mobility back in his right knee and lower leg he will be able to release the locks to get some bend action. He will also be able to release so he can bend his leg to sit down or get in out of the car, etc. vs. the loaner brace where his leg stays straight regardless unless he takes it off. Basically, the new one will have hinges. I am so ready to kick that wheel chair to the curb and I know Rassie is too! We're getting closer by the day.
Rassie using the walker outside AT HOME!
Rassie makes me so proud. He is making great strides. Physical Therapy is going well. Today he came home with a knee brace. It's not the one they are having made for him but a loaner. A very nice gentleman who no longer needed it gave it to him to use. Actually, it's the one he's been using all along for therapy. If it weren't for this nice man, Rassie would still be waiting on his own brace and wouldn't be walking with the walker yet. This type of kindness melts my heart. And I am thankful that there are people still out there willing to help you out just out of the kindness of their heart.
Speaking of braces! Rassie's should be finished by the end of this week or early next week. The anticipation is getting to me! I guess you could say its a fancy brace with all the bells and whistles. It will be one that locks into to place to keep his knee locked and in place for him to walk. Once he gets some feeling and mobility back in his right knee and lower leg he will be able to release the locks to get some bend action. He will also be able to release so he can bend his leg to sit down or get in out of the car, etc. vs. the loaner brace where his leg stays straight regardless unless he takes it off. Basically, the new one will have hinges. I am so ready to kick that wheel chair to the curb and I know Rassie is too! We're getting closer by the day.
Wednesday, April 7, 2010
APPROVED
Things did not take NEAR as long as I expected them to. 12 more sessions of physical therapy were approved and Rassie starts back Friday. So not even a week without therapy. Woo Hoo!
Also, Rassie was fitted for for his brace yesterday. They made a mold of his leg and it will be specially made to fit him. It will be ready in 7-10 days! AND worker's comp. ins. approved it also. I am so excited for him to be walking and on the move at home. It's getting closer.
The blackouts / passing out have been way less frequent. There are days with ZERO episodes. Most days are minimal episodes. And a few days are where he has to lay down and nap because they come on a little stronger. All in all, he's doing better though.
And let's not forget, he's still working hard to kick Leukemia's BUTT!!! Still no major effects from the Gleevec and we are very thankful for that. Just a little hair loss here and there and nausea here and there. Other than that he's doing great! Thanks for your continued support.
God Bless!
Also, Rassie was fitted for for his brace yesterday. They made a mold of his leg and it will be specially made to fit him. It will be ready in 7-10 days! AND worker's comp. ins. approved it also. I am so excited for him to be walking and on the move at home. It's getting closer.
The blackouts / passing out have been way less frequent. There are days with ZERO episodes. Most days are minimal episodes. And a few days are where he has to lay down and nap because they come on a little stronger. All in all, he's doing better though.
And let's not forget, he's still working hard to kick Leukemia's BUTT!!! Still no major effects from the Gleevec and we are very thankful for that. Just a little hair loss here and there and nausea here and there. Other than that he's doing great! Thanks for your continued support.
God Bless!
Tuesday, April 6, 2010
Another Waiting Game
Rassie's 12 sessions of physical therapy ended Friday. They've already put in a request to extend PT since he's been making such great improvement and already reached and passed his goals they set for him. But once again we are met with the waiting game. The hospital faxes all the paperwork over only to be told by worker's comp. ins. that they need more doctors' notes or they won't approve the therapy. GRR!. So, doctor's notes, physical therapy notes and any other kind of notes possible were sent over. There should be no more excuses! Same thing is happening with getting approval for his leg brace. Worker's comp received the prescription but they won't approve it until the prosthetics place sends over doctors notes too. I just don't get it. Worker's comp automatically gets a copy of all Rassie's medical records pertaining to the accident so why do they need doubles and triples every time a request for something new is made? Games!! They just like to play games which prolongs the approval process and is so irritating.
On a brighter note, Rassie has been walking with a walker during PT. On Easter he wore a knee brace wrapped in a couple of ace bandages to help keep it from giving out and he used the walker the ENTIRE day. Everyone was so proud of him. And I know he was proud of himself. It's good to see him up and walking even if it is with a walker. It's improvement that we've been waiting on for a long time now. I wish i would have snapped a picture of him standing to share with you all but I didn't! Next time I will, for sure.
We set up Rassie's next onoclogy appointment for May. We were originally told June but we received a letter in the mail that says we need to call and make one in May. Rassie did labs last week and we didn't get any phone calls so that means they all came back good. And that's all we can hope for. I am also hoping they will give us a time limit for when they will do a bone marrow biopsy to see how things are progressing with his CML in the marrow. That's about it for now
God Bless
On a brighter note, Rassie has been walking with a walker during PT. On Easter he wore a knee brace wrapped in a couple of ace bandages to help keep it from giving out and he used the walker the ENTIRE day. Everyone was so proud of him. And I know he was proud of himself. It's good to see him up and walking even if it is with a walker. It's improvement that we've been waiting on for a long time now. I wish i would have snapped a picture of him standing to share with you all but I didn't! Next time I will, for sure.
We set up Rassie's next onoclogy appointment for May. We were originally told June but we received a letter in the mail that says we need to call and make one in May. Rassie did labs last week and we didn't get any phone calls so that means they all came back good. And that's all we can hope for. I am also hoping they will give us a time limit for when they will do a bone marrow biopsy to see how things are progressing with his CML in the marrow. That's about it for now
God Bless
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