On September 25, 2009, Rassie was diagnosed with Chronic Myelogenous Leukemia. His symptoms: Swollen Feet and bruising. We never exepected a diagnoses of Leukemia. The Doctors and we ourselves, are very optimistic about the treatments available. We know that we have a long road ahead of us and we hope that you will support us on our journey to recovery.

Tuesday, December 29, 2009

More Excuses

So worker's comp called back around 5 today. This time the case manager said that it wasn't that the aquatic was too expensive and Rassie should be all healed.  The excuse this time was that 18 visits (which totals out to 6 weeks) was way too long for him to need therapy.  AND that tomorrow at his appointment the doctor needs to make sure and note exactly WHY Rassie needs therapy and what is going on. All this has already been done but whats one more time around to TRY and get this taken care of.  She also said that the doctor needs to call the worker's comp insurance so they can talk to him personally.  

Just pray that everything gets worked out and Rassie gets approved for the physical therapy that he really does need and deserve.

God Bless & Good Night

Worker's Comp and All It's Glory

More phone calls today. Trying to get Rassie's physical therapy figured out.  He hasn't seen a physical therapist since December 9th except to do an evaluation to be accepted into the physical therapy at S&W.  On December 9th, Dr. F decided it would be best to do PT as an out patient at the hospital instead of as a home patient because one physical therapist or PT assistant wasn't cutting it here at home.  Especially when he had no use of either of his legs and had 3 falls during PT at home. 

Waiting, waiting and more waiting.  Lots of phone calls and what... 2 weeks later?  We finally got some answers today.  I happen to be calling about our insurance statements because our personal insurance is being billed for the worker's comp related medical stuff.  Got that straightened out and in then I was told that just yesterday the worker's comp insurance had called and denied Rassie for PT.  She said it was a verbal denial and they would not know the reason until they received the paperwork and we should also receive a denial in the mail ourselves.

Lots more phone calls.  Rassie's nurse case manager for worker's comp is on vacation until January 3rd.  After calling all over, getting voice mail after voice mail saying to call this number and that number and several messages left, we finally got a call back.   Dr. F had suggested aquatic therapy at the pool.  Apparently aquatic therapy is TOO expensive and that is why they had him doing home patient therapy.  Well, they canceled the home patient therapy on December 9th when the suggestion of doing out patient therapy was made.  So once again he has been left without any 'real' therapy since then.  Then the case manager proceeds to tell us that Rassie's initial diagnosis of neurapraxia should already be healed and there shouldn't be a need for PT any longer.  Well he's not healed!  Not to mention, all the discharge papers say paraparesis.  They are similar but the healing times are different, etc.

SO, we have another appointment with the rehabiliation doctor, Dr. F tomorrow to try and clear things up with what is going on.  Physical Therapy is a MUST.  Hopefully we will get somewhere.

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Rassie's CML seems to be doing ok.  No labs this week.  He has to do labs on the 6th of January and then on the 7th we have an appointment with Dr. W to go over how things are going and pretty much just check up on everything.   The last labs done, Rassie's WBC was at 7,500.  His calcium was low, uric acid was good, sodium was border line low.   That's about it for now.

God Bless & Good Night

Saturday, December 26, 2009

A Christmas Miracle

We were sitting around the tree Christmas morning in the midst of opening gift with the kids when Rassie realized he could FEEL his left leg.  Not only could he feel it he could MOVE it!!  The feeling in his left foot is still not back but the foot was originally numb, the leg was not.  Rassie has been moving his left leg like crazy now. Using it for everything. I told him not to overdo it because those muscles are going to be sore but he's like a little kid and doesn't listen :)  But I know he is excited. I am excited too!!!  It was a true Christmas Miracle!  God is Great!

God Bless

Tuesday, December 22, 2009

wait, wait, wait

I feel like we are constantly waiting. Maybe I am just impatient.  Rassie called the hospital today to check on his physical therapy schedule.  As of yet the worker's compensation has not approved it.  Last Thursday the hospital told him they should know something within 72 hours. I am thinking with the weekend it took a little longer.   But still, I am ready to hear something back on his therapy schedule.

Rassie stood again today. Twice.  We stimulated the spot on his foot and he took control of his left leg.  The first time he stood he took a few steps.  This time I pull his right pants leg to help him keep that foot straightened out so it wouldn't turn in where he stepped on the ankle again.  He did much better.  The second attempt, he just stood and bared weight as much as he could tolerate.  I am proud of him for trying so hard at standing these past two days. 
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Tonight after Rassie got out of the shower he told me his hair was falling out.  He said there was a big glob in the shower. I reminded him that he is on a chemo medication.  Gleevec IS chemo in the form of a pill.  Then we laughed it off when I told him my hair was falling out too because of Lane!  About 3 months after both of my pregnancies my horomones went crazy and my hair started falling out.  I told Rassie we could lose our hair together.  At least for a little while.   

Alright, that's really all there is to say for tonight.  I hope everyone has a great Christmas weekend.  Stay safe.

God Bless & Good Night

Monday, December 21, 2009

Still Waiting

We are still waiting to hear back on when Rassie's physical therapy will be scheduled.  We know it will be 3 times a week though.  The nurse case manager for worker's comp is on vacation. Which should not make a difference because there is another lady handling her cases while she is gone.  But the hospital had also mentioned not setting up to start PT until after the first of the year.  I am sure everything is hectic with Christmas and New Year's right around the corner, literally.   Today my brother and I helped Rassie stand and walk while he did his at home PT.  There is a spot on his left foot.  If you firmly press it it sparks some nerves that gives him controlled mobility of his left leg.  So we did this a few times and Rassie used the walker.  I got a little upset when he was dragging his right foot and was not stepping on it right. Instead it was turned and he was pretty much stepping on his ankle.  I made him stop and sit down.   It worries me he doesn't realize what he's doing because he still can't feel his feet and legs.  I don't want him doing more harm than good.  So next time he / we just have to be extra careful.   Rassie is also coming down off of his pain meds slowly.  Dr. F cut the dilauded in half and cut one pill a day off of the slow release morphine and soma.   This wasn't a problem because Rassie was already taking himself down slowly on his own.  His pain level in his back is getting better and better.  I hope that means the swelling is going down and the nerves will start conducting like they should soon.
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Rassie talked to the oncology nurse today after labs.  His WBC is down to 7.6K Woo Hoo!  Great numbers, well within normal range.  I am not sure when they will be checking to see the decrease in abnormal cells but his next real appointment is January 25.   Rassie's calcium is also a little low.  They told him just to add simple things like cheese into his diet.  He loves to drink milk but lately its been upsetting his stomach with all the meds so he hasn't drank as much.  Also, his uric acid levels are back within normal range and so he only has to take allopurinol twice a week now.   They also suggested extra strength tylenol for the body aches. And they are 95% sure the soreness and body aches are from the Gleevec.  That's about it for now.  I'll update if I remember anything else.

God Bless & Good Night

Thursday, December 17, 2009

Rehab Evaluation

Rassie had his evaluation for outpatient rehab today. Scott & White approved him for three times a week. He will be doing all of his physical therapy in the pool. There will be the occassional out of pool evaluations to see the progress he is making. All we are waiting on now is approval through the workers comp insurance.

Rassie's WBC* last week was down to 18.7 k which is an improvement from the first week of 6leevec's 28k. He was not scheduled for labs this week so we will find out next Wednesday if his WBC* has continued dropping.
Three weeks on the Gleevec and everything still seems to be going good. Rassie gets some soreness and bodyaches in the morning every so often but we're not sure if thats from the back or the meds. He had a little nausea too but we all ended up with a stomach bug so not sure if that was the bug or the Gleevec either. Thats about it for now.

Good Night & God Bless

Wednesday, December 9, 2009

Results & Appts

Today Rassie had his weekly labs at normal.  We should be able to get the results on his WBC* tomorrow.  We probably could have called back late this afternoon but that's ok.  He seems to be doing well on the Gleevec. Still no major side effects. *Knock on Wood*

Today Rassie had another follow up at the rehabilitation clinic with Dr. F.   We asked about the two nerve studies done on Monday afternoon.  Both came back with good results.  His nerves seem to be conducting just fine.  This is good news, it means that none of his nerves have been severed.  It is still looking like the swelling is keeping the nerves compressed and the cause of the loss of feeling to his lower limbs.  The swelling in his back has gone down some but not nearly enough.   They are still working to get an MRI and CT scan of his upper back for the off and on numbness in his left arm and the cramping in his right shoulder.  It shouldn't take so long but it does.  Everything has to be sent through worker's compensation and approved before anything is set up.  We're going to call and check on all the appointments tomorrow though.  

Ok, so back to today's appointment.   I think it went fairly well.  Dr. F checked Rassie over thoroughly as usual.  He did lots of same things physical therapy does just to see how much movement Rassie had. Then he poked and prodded with a needle up and down the legs, back and stomach.  Then he checked reflexes, all were good.  Lastly he took his reflex tool (sorry I don't know what its called) and at the opposite end it comes to a dull point.  Dr. F scraped it on the bottom of Rassie's feet.  When he got to Rassie's left foot, Rassie could feel pain shooting up his foot and into his back.  That was a good sign.  And then for some reason the scraping stimulated some nerves and Rassie's left leg lifted up and the muscles kind of cramped.  And for about a minute Rassie had some controlled movement of his left leg.  This is the leg that has most recently gone numb!  It was so exciting to see and Rassie was super excited and happy.  He laughed and smiled and was just over all tickled about the entire situation.  

Dr. F is very optimistic that Rassie will recover.  "When" is the question though and the answer to that is "indefinitely".  Physical Therapy will no longer be at home.  We're moving back to the hospital to do PT as an outpatient. I think that this is a great idea and there were be lots more people and resources to help him get better and push him to try.  We also threw out the idea of aquatic therapy. Dr. F thinks that is a great idea and is going to recommend it.  Rassie is supposed to follow up with Dr. F again in 4-5 weeks.  We should be hearing back about our new schedule of events as soon as everything is approved through worker's compensation.  Our nurse case manager has been fairly good about getting things taken care of so it shouldn't take too too long hopefully.

That's about it for now

God Bless & Good Night

WBC = White Blood Count

Monday, December 7, 2009

Unexpected Appointments

Rassie had a followup with his primary this past Friday.  Today the rehabilitation clinic called to say they finally got Rassie scheduled again with neurology for the 14th of this month.  Apparently, his primary didn't think that was soon enough and called neurology saying this was an emergency and he needed to be seen ASAP.    Which leads to our exciting day.  No one ever called back to tell us they moved up his neurology appointment for TODAY!  So at 12:30 as I am getting the kids cleaned up and ready for nap the hospital is calling asking Rassie where he is at.  He's already 30 minutes late for his noon appointment.  So after snatching up the kids, throwing a diaper bag together and getting all 3 loaded into the car I zip us to the hospital by 1.   We are there until 3!  The neurologist checked Rassie over thoroughly.  Up and down his arms, legs, back, stomach, neck. Pretty much his entire body.  He decided he wanted to go ahead and do two nerve studies on Rassie so he walked us over a few halls.  There they did two different nerve studies.  One with electricity and the other with needles.  The kids and I waited in the waiting area.  It seemed like it took forever! And they weren't as thorough as they would have liked.  The bed in the nerve study rooms were too high for Rassie to transfer from the wheel chair so they had to make do the best they could.  Not sure when the results will be in but we are supposed to be getting a call with them sometime in the near future.  If not, Rassie has an appointment with rehabilitation on Wednesday.  I am hoping the nerve study will shed some light on what is going on and give us some idea on a time frame.
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Rassie is still doing good on the Gleevec. He has gotten nauseated a few times but is on a nausea med for all this other medications so it seems to be keeping things at bay.   Saturday he said his body felt a little sore, like when you're getting the flu.  But I got him up and moving and those muscles worked out and he felt much better. 

God Bless & Good Night

Sunday, December 6, 2009

The Little Things

I want to share a special story from last night on the Power of Prayer. We were all snuggled into bed. Rassie was still sitting up getting situated but I had already layed down and said my prayers. I prayed that even though Rassie’s recovery from his back injury was a long, slow process that God would let us know he was getting better by even the simplest thing like being able to move his toes. The next thing I know, Rassie tells me he felt his toe twitch! I was so excited. I told him about my prayer and at first he laughed because he didn’t believe me but then he realized I was telling the truth. I love the little things God does for us! He truly does give me Faith.
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Rassie is doing good. Keeping his spirits high. He has is moments of frustration but who wouldn’t? I’m keeping him busy. He’s been helping out around the house. He gets diaper duty a lot. J I think its great that the chase lounge is just perfect to lay the kids on so that he can change diapers. I am sure he doesn’t appreciate it all that much though. Haha! He’s been helping keep the kids entertained too. He gets in the floor and plays with them. He is determined to help Lane Roll over on his own! He sits there with the video camera cheering him on. Too funny! The Saturday after Thanksgiving, Scarlett and I put up the Christmas Tree while Rassie and Lane supervised. Then Rassie helped decorate. We had to go out and get candy canes because that is Rassie’s favorite thing to put on the tree! I think it looks great!


Happiness keeps you Sweet, Trials keep you Strong,
Sorrows keep you Human, Failures keep you Humble,
Success keeps you Glowing,
But only Family and Friends keep you Going.

Friday, December 4, 2009

A Week

A week ago today Rassie started the Gleevec. So far, no major side effects. It is causing a few mouth sores but the doctor prescribed a mouth wash that is helping with those. Rassie's Fellow, Dr. O had her baby this past week. Congrats to her! Rassie went in for labs on Wednesday. His WBC* is back up to 28k. They seem to think it is his body adjusting to the Gleevec and will be under control soon. They will continue to monitor his counts on a weekly basis. Once they feel comfortable they will move labs to every 2 weeks. Rassie's next oncology appointment is not until January 25th because of Dr. O having her baby 3 weeks early and the staff was unprepared. But K, the case worker is working on getting an appointment sooner than that. Most likely Rassie will continue to be seen by Dr. W. He is the staff doctor over Dr. O.


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Rassie had a follow up with ETS on Wednesday morning due to the absesses he received from the damaged tissue. I have been cleaning and dressing them daily. They look great and no longer need anything but a daily cleaning (so bathtime) and a bandage if Rassie feels necessary.

Today, Friday morning, Rassie had a follow-up with his primary doctor. Anytime there is a hospital stay you're supposed to follow-up with you're primary. He let her know everything that is going on here and all of his concerns. Because of the newer numbness in his left leg, the burning feeling he gets in his right shoulder and his left arm going in and out on him, she is having more MRI's and CT scans schedules. Rassie's injury happened so fast. He says he remembers getting hit twice with a cable but everyone's focus has been on the lower hit because that is where the swelling and hematoma are. Not to mention he only had loss of feeling in the lower part of his body. Since later symptoms are starting to appear Dr. R wants new tests so they can look at the upper body. Hopefully that will shed some light on things.

Physical therapy came twice this week. We missed today because Rassie was at an appointment and that was the only time PT could come so she had to reschedule for next week. I would like to say Rassie is making progress but it's a slow process. The upper right leg is getting stronger and moving it is becoming less painful. The lower half of the leg really hasn't made any improvement. The left leg is still completely numb. I do have hope because of the movement while sleeping though. Something is going on! We helped Rassie to stand at the kitchen sink this week. Last week he had a fall with the walker. His legs buckled and there was no where to go but down. The kitchen sink seemed safer this week that way we could help lock his knees and keep them from buckling. Tuesday went well but Wednesday was a new story. We're not sure if his ankle turned or what happened but somehow his foot slid back under his chair and once again he went down. Don't worry, he didn't just crash. The PT assistant and I are always helping during these workouts. The PT assistant decided no more standing for the time being. We see Dr. F, the rehabilitation doctor again on the 9th and we are still waiting on a scheduled nuerology appointment.

Sorry this was such a long update. Just wanted to try and get everything in. I hope all are doing well.

God Bless