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.

~~~~~~~~~~~~~~~~~~~

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

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

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. 
~~~~~~~~~~
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

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.

~~~~~~~~~

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

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

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

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.

~~~~~~~~~~~~~~~~~~~~~~~

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

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.

~~~~~~~~~~~~~~~~~~~~

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.

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.

~~~~~~~~~~~~~

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

So Far So Good

Rassie has been on the Gleevec for four days now. So far everything is pretty good. The first day he had some nausuea and vomitting early on. I am pretty sure it was a side effect of not eating and taking several medications all at once. Other than that one time the only side effect he is having are mouth sores. They are a side effect of the Gleevec and Dr. O prescribed him a mouthwash to rinse with. She said its a pretty common side effect.

Not sure if I ever updated with Rassie's most recent WBC* but it is in the normal range again. The last read was at 8,200. YAY!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

This week is a pretty busy one for Rassie. Physical therapy is coming Tuesday, Wednesday and Friday. The home health nurse is coming Tuesday. Lane has a doctors appointment Tuesday morning so Daddy is going to stay home with Scarlett. Rassie is pretty comfortable with watching the kids alone for short periods. Wednesday is lab draw day and Rassie also has an appointment with the ETS clinic for an absess he got from all the tissue damage to his back. It's looking great and almost completely heeled. Thursday I think we are actually FREE and staying home to relax. Friday Rassie has a follow up with his primary, Dr. R just to make sure everything is going smoothly. Next week starts the process all over again and on December 9th we have another follow up with the rehabilitation doctor Dr. F. We are still waiting on approval from workmans compensation insurance to see the nuerosurgeon again. Dr. F thinks it is a good idea for a re-evaluation with that department. Doesn't seem to be much improvement so far with the hematoma yet either.

If any of you remember, Rassie lost feeling in his left leg. We talked with Dr. F on the phone this week and told him how Rassie can move the leg in his sleep. Dr. F said that is pretty normal because your body and nerves are more relaxed in your sleep. It's also a good sign that the body part still works! Rassie is making improvement strengthening the upper part of his right leg. He can move it quite a bit compared to when the accident first happened. He still can't move the lower portion or feel anything other than tingling. With the exception of feeling the blast of cold tingling on his feet the other day.

This past week the at home physical therapy was a little rough on Rassie. With the new loss of feeling in his left leg, standing with the walker was a little bit tougher. He managed to stand but then his legs gave out and he went to the floor. Don't worry, he didn't just crash. They physical therapist assistant and I were helping him and we got him down and seated on the floor. So the next time Rassie did the standing exercise we did it at the kitchen sink. This way he could lock his knees against the cabinets and keep them from buckling. He did a great job and stood a total of three times. Alot of the weight is still on his arms but thats ok. He's still doing a great job!

That's all for now.
God Bless & Good Night
 
*WBC = White Blood Count

Gleevec is HERE!

Rassie's Gleevec arrived via UPS on Wednesday morning.  He started his first dose Friday.  So far no ill side effects.  I expect it will take a few days or weeks before they kick in, but who am I to say.   He did get a little sick to his stomach yesterday but that was most likely because he took all his meds for his back injury too and on an empty stomach.  I am always telling him to make sure he eats when he takes his meds to avoid these things but sometimes Rassie is just so hard headed!  I guess thats why I love him though :)   Rassie will continue to go in every Wednesday for labs and then on January 25th he goes back to the oncologist to see Dr. O and Dr. W to see how things are progressing with the Gleevec.   Of course if he needs to see them for anything in between now and then he can call and schedule an appointment.  K, the case worker in the oncology department has also been a big help in answering any questions we might have.   So for now its just a sit back and wait situation.  And I am excited to see the progress Rassie makes in the days, weeks and months to come!

~~~~~~~~~~~~~~~~~

No new news on the back injury.  We are still doing physical therapy here at home by ourselves everyday and with a physical therapist 3 times a week.  Making some progress in the right leg and very, very little is starting to come back in the left but I'll take it!  Lot's more appointments and hard work to come.  I will update when we know more.  OH, there is one new thing.  Yesterday in the car I turned the heat on and it blew a blast of cold air on the feet first and Rassie felt the cold on his feet!!! It was only for a minute or two and it was a cold tingling feeling but he has not been able to differentiate between hot and cold since the accident.  This was BIG!!!!  I was super excited and so was Rassie.  Hopefully the hematoma is starting to decrease and the nerves that were compressed will start to regenerate so that Rassie can regain feeling

God Bless

A much needed update

AH! I feel like I haven't been on here in forever. The rush of everything going on keeps me busy.  

Rassie had an oncology appointment today. Everything went great. The doctors are all so nice.  The Gleevec still has not made it but is being UPSed to us by Wednesday.  There was a misunderstanding somewhere down the line and the pharmacy claimed they never got approval from the insurance but the social worker faxed that information personally but all is well and it WILL be here by Wednesday.  K has also offered to help with paying a few months copayments. I think that is a very nice thing of him to do. Please pray that God thanks him for such generousity.   Rassie's WBC* was down to 8,200 at last weeks draw.  That is great news.  Today Dr. O said there is no need to take the allopurinol anymore and that as soon as Rassie starts the Gleevec the hydrea can go as well.  I am so excited that Rassie will finally be starting the 'real' treatment.  And I Pray that this treatment does wonders for him.

~~~~~~~~~~~~~~~~~~~~~~~

Last weekend Rassie lost feeling in his left leg. Originally it was the right leg and left foot.  Rassie spent Tuesday night at the ER until late.  The doctors could not find anything new so they sent him home since he had an appointment scheduled in 2 days with the rehabilitation doctor anyways.  Come to find out they diagnosed his new symptoms as swelling from an enlarged spleen that they blamed on the CML.  BUT we got that taken care of.  When Rassie was at his oncology appointment today he asked Dr. O and Dr. W if the CML could be causing any of the symptoms pertaining to his back injury and was told that they are in NO WAY related.  They made sure to put that in his medical records.   This past Thursday Rassie saw the rehab doctor.  There was a mix up there too. They called him with an appointment but it didn't get put into the computer. The good news is that the doctor went ahead and saw him.  He said Rassie's new symptoms are just late symptoms from the back traume and that yes that does happen sometimes.  There was lots of poking and prodding and although Rassie couldn't feel it the Dr. was seeing twitches. He said that was a good sign because it meant something was going on and it was still working.  Rassie's left leg is still numb but I have noticed during the night he is able to move it.  I told him and so he tried during the day.  If moves pressure off of the knot (also the hematoma) on his back and more to his left side he is able to move that leg.  He still can't feel it other than a burning sensation off and on.  Dr. F is going to follow his case and set him up to see a nuerosurgeon again.

That's about it for now

God Bless & Good Night

One Step Back

For every step forwards there is always a step backwards.  Rassie has been doing so well with his physical therapy and managing the pain in his back.  He's been moving around like a pro with the use of his wheel chair and gettting much better at transferring to and from the wheel chair.  

Last night we took a step backwards.  Rassie's right leg from the knee down has loss of feeling along with his left foot.  Last night his entire left leg went numb.  He also said there was a burning sensation like it was on fire.  The burning feeling comes and goes.  This morning the home health nurse checked him over and Rassie went ahead and called in to the doctor.  The doctor suggested being checked in through ER to be re-evaluated since after 4 weeks he is experience a new loss of feeling.   We made it to the ER around 2:30 pm.  They poked and prodded, did an EKG (by mistake I might add), a CT scan and and MRI.  The CT scan came back clear.  He was back from the MRI at 8:30 and here it is midnight and we still haven't heard the results on it.  We were told at 9:30 they should have the results in about 30 minutes.  All this waiting is driving me nuts.   I went ahead and picked up the kids and came home.  Rassie is still in the ER awaiting results.   If the MRI shows nothing new from the last one they will release him.  If something has changed they will reasses whether or not to admit him or send him home.  So that's where we are at right now.

The Gleevec hasn't arrived yet but should be here anyday.  Actually I didn't get a chance to check the mail today so if we got the package I don't know.  I'm going to check first thing in the morning.  We do have a few questions before he starts though.  He's still on the hydrea and allopurinol and so I am assuming he will have to stop those.  He has labs tomorrow so we plan on asking then. 

Good Night & God Bless

Amazing News

The oncology case worker, K is a miracle worker.  He took Rassie's case and went straight to the insurance with it.  Got the last test the insurance company requested done on Wednesday and called us this morning to say Rassie HAS been approved for Gleevec.  The monthly co-pay is much lower than anticipated and I am so greatful for that.   The oncology dept at the Glenda Vasecek Cancer Treatment Center at Scott & White has offered to pay for the first months supply.  How nice is that? Thank you S&W.  And K is getting us in some other programs to help offset the cost of monthly copays, any hospital stays and other expenses that might come our way due to the CML.

Rassie's Gleevec should arrive in the mail early next week and he should be starting treatment either Monday or Tuesday. Which ever day it happens to come.  I want to thank all of you who have kept us in your prayers and thoughts.  The power of prayer is awesome! 

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Rassie has been doing well.  Yesterday I did his physical therapy exercises with him.  He stood with the walker 3 times for about a minute each.  He did such a great job.   Today the PT assistant came.  He stood with the walker twice and took a few small steps.  He is such a trooper.  Alot of his weight goes to his arms, then to his left leg and he puts the least weight on his right leg.  He still has lots of shooting pain when he stands but he is pushing through it really well.   We have a long road ahead of us but I have faith that he will regain feeling in both of his feet and his right leg and that he will be able to walk again with no problems.  The doctors are very optimistic that this is only temporary paralysis and he will get better.  It will just take time.

All of Rassie's follow-up appointments have been scheduled for everything from the CML to the Rehabilitation.   Plus his weekly labs are set up again to watch his WBC.  There has been no more talk about a bone marrow biopsy but I am sure they will still want to do one eventually.  The next oncology appointment is November 23rd so we will find out what our next step is at that time and get all of our questions answered.

Thank you for your continued support.

God Bless & Good Night

Another Test

The oncology case worker called today.  He has talked with our insurance. They have not agreed to cover Gleevec yet. They want another test done.  It's a simple blood test to verify that Rassie has the Ph+ CML. (if you look to the right side of the page you can read more about Ph+ CML)   I have to take Rassie in to do labs today anyways so they are just going to take the extra blood they need.  After labs we're supposed to stop by K's (the case worker) office and see if we can't get Rassie's appointments moved up. Because of the whole work injury appointments got pushed back and moved. Now his next appointment isn't until December sometime.  But we're going to get that worked on and reschedule. 

We have been nonstop here at home. There has been a little downtime to relax. Rassie is taking it easy. But me! I have been going and going and going. Babies, baths, feedings, dinner, dishes, laundry, floors, bathrooms, start all over again and go..................  It's not as bad as it sounds.   Rassie has a homehealth nurse coming everyday to check his vitals and some of his cuts and scrapes to prevent infection.  And a physical therapist comes 3 times a week for the obvious reasons.  Rassie has what is called a hemotoma on his back.  It is what is causing alot of pressure on the nerves and most likely the cause for the loss of feeling.  It could take a while for this hematoma to dissovle and go away.  It is very painful but we have been keeping it undercontrol the best we can.  The physical therapy is to help keep his muscles built up and in use.  Think of the old saying ' Use it or Lose it'.  We definitely don't want Rassie to lose the use of his legs and muscles so its work, work, work!  He is such a trooper. 

May the Fallen Soldiers who passed during the Ft. Hood shooting

Forever Rest in Peace

Finally, A Moment to Update

Rassie was released from Scott & White on Friday.  I was worried about getting in to pick him up because the hospital was supposedly still on lockdown from the shooting at Ft. Hood. But I got right in.  We got Rassie and his 3 weeks of collected "stuff" packed up and ready to go.  All we were waiting for was the nurse to come in and go over the discharge papers. Seemed like it took forever but we finally made it out of that place.  He will continue physical therapy as an outpatient and they are trying to set it up so that PT comes to our house.  How nice that will be!  We swung by the registration office on our way home and picked up temporary handicap tags.  I am thankful for those because I can't get the car door open far enough for the wheel chair without them!  Then I got Rassie all settled in at home and fed.

Then it was off to get his prescriptions. Oh the joys!  I went to CVS first.  They didn't carry the pain medicine prescribed. The pharmacist called all over town for me and no one carried it in that dosage.  And the doctor forgot to write 'workers comp' on the prescription so they wouldn't take the rest of the scrips as workers comp.  Off to pharmacy #2.  I went back to the hospital to use their pharmacy. I figured if the doctor prescribed this pain med the hospital pharmacy should have it. WRONG!  I was told they had it in a lower dosage and I would have to get a new prescription. No problem. I paged the doctor he called back immediately. I ran up to the 4th floor grabbed the new scrip and went back to the pharmacy downstairs.  Only for them to tell me they didn't have any dosage of that pain medicine but to come back Monday! You have got to be kidding me.  I let them fill the rest of the meds and I ran home to Rassie.  He has a slow release pain med that did get filled and he needed it plus the others.  I called around to even more pharmacies.  Guess what?! I found one that had the dosage for the orginial scrip and not the rewritten one. Just my luck huh? I just about given up.  I finally found a Walgreens that had the right dosage but not enough pills. I decided to go with it or else Rassie wouldn't have anything until Monday.  My luck got better when I went to pick up the prescription.  The worker's comp insurance was already closed for the weekend and I couldn't get approval on the last pain medication.  Luckily I had our BCBS ins. on me and it was only $10.  What a night!  I finally made it home. Made sure Rassie had everything he needed and we were both passed out by 9:30!

Saturday was Rassie's birthday. I made him breakfast and we just relaxed for the early half of the day.  Then at 5 we had a wedding to be at.  Rassie was up for getting out of the house and going so we made our way there. It was a beautiful wedding.

Since I didn't get to do anytihng special for Rassie on Saturday, I cooked slow roasted steak and potatoes on Sunday. It turned out so yummy!  I also treated Rassie to a homecooked breakfast and a good lunch.  I have to say he enjoyed it alot.  But why wouldn't he? He's been stuck eating hospital food 95% of the time for the past 3 weeks!   Scarlett and I also made Daddy a cake.  Scarlett was such a good little helper and Rassie really loved watching her help out and have fun.   To see pictures of Scarlett making Daddy's birthday cake click here.

We have all had a really good weekend and hope there are many more to come!  We are waiting on all the follow up appointments to be set up (for everything, injury and CML) and we will go from there. Tomorrow I call the case manager and find out what the insurance said about Gleevec. We still haven't heard back. I'm hoping no news is good news.

God Bless & Good Night

Yes he's 30 but we were out of candles so it was "1" or "Tinkerbell"  Scarlett picked out the "1".  I think Daddy enjoyed being 1 instead of 30!   Happy Birthday Rassie!

Coming Soon....

....A nice little update... For now, Rassie is home and well.  Took a little getting our hands on his pain meds.  Got all settled in last night. Relaxed for the most part today and then a wedding. It was beautiful.

The best part of today.  Rassie being home for his birthday.

Happy 30th Birthday Rassie!!!!! 
                We love you- Mommy, Scarlett & Lane

Prayers for the Fallen

Ft. Hood is about 30 miles here from home. What a day it has been. 13 Fallen and 30 more injured. Under fire by one of our own.  A soldier nontheless.  What a tragedy. It saddens my heart.   The lockdown for Ft. Hood has been lifted and cars are pouring onto base.   Some victims were flown to Scott & White hospital where Rassie has been for the past few weeks.  As of now there are 4 in surgery and 5 more in the E.R. here at Scott & White.  There are many many more.   There was a an immediate blood drive and I am so proud of Central Texas for the turn out.  Tonight Scott & White is having to turn donors away and ask them to come back after 8 a.m. in the morning.  The lines were out the doors, down the side walks and around the corner. 

Say a Prayer, Hug your loved ones, Fly your Flag at halfstaff this week.  May the Fallen rest in peace and ay God be with their familes.  May God watch over the injured and be with their loved ones as well. 

A Piece of Beauty from Above

A piece of beauty that God has Blessed us with

This is a picture I took. It's been a while since I've looked at it but I always enjoy days like this when God's beauty really shines through. It always brightens my day and makes me smile.

Life is Hard Sometimes

As I was reading through all the blogs I keep tabs on today I came across this one that really caught my attention.  Ryan also has CML and is already undergoing treatment with Gleevec. Please keep him Ryan in your prayers.   But today's post was different. It wasn't about himself. It was about his young cousin who was recently diagnosed with ALL.  It is also a form of leukemia but is much faster paced.  It is heartbreaking to hear of anyone diagnosed with leukemia but it saddens my heart even more to know that a child has been touched with this disease. I have great faith that Carson will fight this ALL and win!  I have known two people from my childhood who were diagnosed with leukemia as a child and are now grown adults with families and children leading happy, healthy lives. 

Please take a moment out of your day to stop and say a prayer for Carson and his family.  You can visit his site at http://www.carsonwiener.com/

Wednesday Wishes

Rassie's Wish this Wednesday is to be home in time for his birthday.  His Birthday is this coming Saturday, November 7th.  And just his luck, he's coming HOME Friday!

We are all very excited.  Rassie feels some relief about being able to come home.  He can't wait to be home for good.

I think this calls for Birthday Cake and a home cooked dinner!

G'night and God Bless

Daddy's Encouragement

I wanted to share some Daddy's encouragement... I think we will all agree these two little miracles are great encouragement!

We miss you Daddy on days we play at the Park.

We can hardly wait for you to come home!

We Love You Daddy!

I'm dreaming of Daddy! He's my Hero!

Remember the days Daddy, when we played Rockband?

I can't wait for you to come home and let me play again!

Look at Me Daddy, ain't Life Grand!

Your Sweet Little Pumpkin who brought you lots of treats!

And don't forget Mommy, She Loves You too!

There's Hope for the Insurance Yet!

I don't know if you all remember, but when Rassie was diagnosed with CML not too long ago they ran our insurance and Gleevec was denied.  I kept thinking that our insurance denied it because they considered Rassie's CML a pre-existing condition. But why wouldn't they?  He had just started a new job. The insurance had just kicked in. Then Rassie uses the insurance for the first time and BAM he has leukemia.  I guess if I were the insurance company I would have been a little skeptical also.  Today, Kevin, the oncology case manager contacted our insurance company again to get things worked out.  And what do you know, the insurance originally denied Gleevec because they did think that the CML was pre-existing.  This is somewhat of a relief. Now we can try for the Gleevec again.  As of yet, we haven't heard back from the insurance to know if the Gleevec has been approved or denied.   I am definitely going to be praying for good news.   If approved, we still might face more obstacles like a high copay.  Kevin said if the copay is high then we will not go for the insurance right away.  Instead we will try to get involved with different Foundations to help pay for it instead.   A copay for Gleevec could run up to $1,000 per month.  Yes, it's that expensive apparently. So, say an extra prayer for us tonight that all goes well with approval and a low copay.

On another note, the rehab team for Rassie's worker's comp case had an evaluation meeting today.  Unfortunately we didn't get to talk with the doctors so we don't know exactly what the plans are.  The nurse did look at the chart though and said it is written down that he may get to come home this Friday.  How exciting is that?   They did another ct scan yesterday.  The knot and bruising on his lower back is still there.  They had anticipated it would have started to go away by now but that's just not the case.  It is a hemotoma (sp?).  Or a pool of blood.  They are still hopefull it will go away on its own.  Early on they had talked about draining it but its really not possible because the blood is pooled up in tissue and such, its not just a pool of liquid.  Other than that, everything seems to be moving in the right direction.  The PT team helped to stablize him again today so that he could use the walker.  Rassie did mention that the team helped less today, so that's even more imporvement.  I was hoping to have an estimate on when they think he will be out of the wheel chair and using the walker but I didn't get my question answered. I visit in the afternoons and late evenings and by then the doctors have already made their rounds.  And for some reason Rassie never asks!  But I will be patient. Hopefully he remembers to ask all my questions for me tomorrow :)

 Good Night and God Bless

Hooray For Weekends

Rassie got to come home two days in a row on a pass this weekend.  Everything went pretty smoothly.  He's able to fit through all the doors except the master bath.  We have a chase loung and that's where he set and relaxed.  It was the perfect spot for him. He transitioned to the car really well also. The PT Cruiser is just the right height. Now I wish we could use the Journey because I didn't have the space for a wheel chair and a stroller in the back of the Cruiser!   I got to see Rassie doing some physical therapy.  He is able to kick his left leg out to do leg raises. He tries a little with his right leg. It doesn't go as much.  He also lifts knee to nose  (not actually that far but up like that) and the PT helps him do those.  He did a great job. He also has to do bicycle pedals with his hands to keep his arms moving and in shape.  Yesterday in PT they stablized him enough so that he could stand up and walk with a walker. He didn't go far but its an improvement from the parellel bars.   It really hurts through his right foot up through his leg and into his back.  But he IS doing it.  I just keep reminding him how proud I am and that he is doing an awesome job.  We've started taking little trips outside to the Healing Garden when the weather is nice. I think it does him good to get out and get some fresh air.

All of the doctors working on Rassie's rehabilitaion case were supposed to have an evaluation meeting today and let us know approximately how long he will have to stay and a date to look forward to for coming home!  I am hoping sooner rather than later but if not I will survive a little longer without him next to me each night.  My main hope is for him to get stronger and better with each day so that he will walk again. And with any luck,  back to his old self again!

Not much news on the CML.  His white count numbers are still down. Not where they are supposed to be but pretty close.  The Oncologist Case Manager was supposed to work on the insurance coving Gleevec yesterday.  I have not heard anything yet.   That's a different department from where Rassie is at and so there are 2 seperate case managers that we are trying to keep seperate since one is being paid for by worker's compensation and the other by our own health insurance.

A Few Hours Get Away

What a busy few days. An oncologist came by Rassie's room yesterday and his Fellow (resident type doctor) came by today.  He says he does not see any reason to prolong trying to get Rassie on the Gleevec.  Another doctor had initially mentioned waiting until the whole rehab problem was over with.  I also talked to a case manager for the oncology department. I have to get our insurance card to her so she can make a copy front and back. Not sure what happened to the first copy.  They are going to try getting Gleevec approved through our insurance company again.  *fingers, eyes and toes crossed* and of course lots of praying that it goes through this time!  The doctor that stopped by said that Rassie has the 926 strain of CML.  I am going to have to double check that number because I can't remember for sure.  He also said that they were definite on it being CML and really the only reason for a bone marrow biopsy now is for completion of diagnosis in his charts.   I know Rassie does not really want to do the biopsy but it's just one of those things he has to do.

On to the few hours get away! The physical therapists had Rassie call me at noon today. They wanted me to be there at 1 for his PT time.  Bad news! Both babies were down for a nap and there was no way I was waking both of them.  But they said that was fine and so I have to be there at 9 in the morning.  What they really want is my car! They are going to see how Rassie transitions from the wheel chair to the car and back again. If the transition goes well they are going to talk with the doctor about getting a pass to come home for a few hours on Sunday.   YAY!  We have a Dodge Journey that I drive.  For those of you who don't know its a cross over between a SUV and a Mini Van.  At least that's what I am told.  Rassie and I both agree it might be too high to transition so we are going with the PT Cruiser instead.  It should be a perfect height and make the transition alot easier, plus it still has tons of room. Now all I have to do is switch out the carseats.   I am so excited and hope the transition goes well!

Oh, and there's more progress.  Rassie walked the entire length of the parallel bars yesterday. I forgot to ask about today because we went to a little (lobby) Halloween Party and outside for a bit.  I have also noticed when I help him move his legs that he is using them more on his own.  I can tell that he's putting weight on his left leg and that he is trying to lift his right leg more by himself.  I told him that I had noticed this and that I am so very proud of him for working so hard at it. 

Slow progress is still PROGRESS and that's what counts.

Taking Steps

First, I want to thank everyone who is following our story and praying for Rassie and our family.  It means so mcuh.

Rassie's CML is doing ok.  Dr. R lowered his dosage of hydroxyurea a little too much.  His white count went up again to 58k yesterday.  The physical therapy doctor went ahead and increased the dosage.  Next Monday, November 2nd.  We will meet with the oncologist and have Rassie's first official appointment.  Hopefully we can get the Gleevec worked out then.  It may not happen right away but the good news is the hydroxyurea is keeping it under control in the meantime.

Rassie's back injury is so-so.  He is still unable to really feel his right leg and both feet. Just pins and needles. But he is making progress of sometime.   He is able to move his left leg more without the pain in his back.  He seems to think his left foot is waking up more.  And yesterday he took his first TWO steps!  I am so very proud of him.  Today he took a total of TEN steps!  I am so excited for him.  They physical therapists helped him up to the parallel bars twice.  The first time he took four steps and the second time he took 6 steps.  He says that all the pins and needles in his right foot and leg turn into nails and a sharp pain goes up all the way from his foot up to his back.  He says its very painful but he knows he has to try so that he can and will get better.   I have to tell you though, these are extremely supported steps.  He has a belt they put around his waist to help hold him up, plus the parallel bars and then the two physical therapists who are right there along side of him the entire time.   They PT's do have to help him to get on the bars.  They have to lock his legs with their legs.  What this means is one stands in front of him and puts their toes to his toes and their knees to his knees and then they pull him up.  

He is still doing physical therapy twice a day and occupational therapy is down to a group therapy once a day.  Occupation therapy thinks he is doing great and doesn't need anymore therapy in the area of being able to take care of himself. As for the physical therapy, he still has a ways to go.  But the progress he is making is just amazing and I will take anything we can get right now.  Did I  mention how proud of him I am?!  Tuesday he has an elvalutaion with the rehab floor doctors. They will make their decision then on whether he gets to come home and continue with rehab as an outpatient or if he needs to stay another week.

That's our update for now. 

Not Much to Update On

There's not much to update on. Rassie's white count went up a little from 17k to 30k.   Could be they went to low on his hydroxyurea or could be that his bone marrow just let off extra that day.  He has an oncology appointment rescheduled for November 2nd.  If he is still in the hospital they will arrange for him to be taken to the appointment.

As for his back injury. There's not much of an update. He's in the rehab unit. He does 1.5 hours of physcial rehab and 1.5 hours of occupational rehab a day. Sometimes it is group therapy and they talk about things.  They are still playing around with his pain meds to see what works best for him.  They rearranged the meds today and Rassie seems to think they are working a little better.  It still hurts him alot to try to move his right leg (at the hip joint) .  He said it is becoming easier to move the left leg, less painful. Rassie also thinks the pins and needles in his left foot seems to be getting better.  He hasn't really noticed any improvement in the entire right legt. (The right leg is the one that's all pins and needles, not just the foot).   They are still thinking a total of 2 weeks in the rehab unit before they send him home.  They want to make sure his pain is under control and he is as capable as possible of taking care of himself and being independent. 

That's about all for now.  I'll update you when I have more news.

STC-4 Here We COME!

Rassie is getting moved to STC -4 today (special treatment center, floor 4).  That's the rehab unit!  We are super excited about this.  The attending doctor for the rehab unit thinks that Rassie will only be there 2 weeks before he comes home. I am hoping sooner.  Their goal to get him home is to get him to be as independent as possible. So that does not mean he has to be walking before he comes home just mobile.  Walking will come with time but he is making progress.  He is already able to get himself to the wheel chair with minimal help.  He also is able to get himself to the bathroom and the shower.  All these are good, positive things! Today the physical therapist helped him to stand twice with the walker.  As painful as it might be, he did it.  I am very proud of him. 

That's my short update of the day. No new news on the CML.. Since his numbers are doing well its on the back burnere for a short time.  He is still on the hydroxyurea and allopurinol though.

Rehab is in the near future

Rassie's white count is still hanging in there at 17k as of today. Not bad at all.

Rehab is in the near future for Rassie.  They really want to get him moved down to the rehab unit of the hospital.   This excites me.  I am sure it excites Rassie too he just doesn't show it as much.  He still has a little bit to go before he gets there.   First, they want him on oral pain meds only and IV free.  It is in the orders that he can get pain meds through the IV if needed but so far he is hanging in strong since yesterday with oral meds only!   Second,  he has to be up to doing 3 hours of physical therapy a day.  This doesn't mean 3 hours consecutively, just throughout the day it needs to add up to 3 hours worth.    I really do have faith that Rassie can do this.  Once he gets moved to the rehab until we will only be able to visit between the hours of 5 and 9 because they do therapy sessions during the day.  I can so handle this if it means getting my husband better and home!

Today two physical therapists came in.  They helped Rassie scoot to the edge of the bed and stand up using the walker.  You have no idea how AWESOME that is!!!!!  His feet and right leg are still pins and needles but the fact that he was able to do this is just....WOW!  I am so very proud of him.  

I cannot wait for the day I update you guys and he's moved to the rehab unit and even better the day I update to say he's coming home!!!

Not Much News Today

So there's isn't much news today in the way of Rassie's CML.  They didn't do labs today because his numbers are looking so well there really isn't a need to do them everyday.  He was scheduled to only do them once a week anyways.  If it weren't for the back injury they would not have been doing them everyday .

So here we are a week and a day after the accident and there still isn't any improvement.  After a nurse failed to do her job yesterday. Rassie was left waiting in a wheel chair for over 2 hours for sheets to be put on his bed so he could get back into it, get the pressure off of his back and his feet propped back up.   It caused both legs to go numb from the hips down and tremendous swelling.  After asking to speak to a charge nurse, Rassie's nurse had sheets put on his bed and then left him to move himself from the wheel chair to the bed.  He's able to move his upper body over but having no feeling in his legs he is still unable to move them back and forth from bed to wheel chair and vice versa.. So he had to wait some more! I was at home with the babies so I was not happy to hear about this.   It also caused his lower back to swell up and bruise. ( I will try to get a picture uploaded later but I must warn you it looks nasty)  The doctors seem to think that leaving him in the wheelchair so long aggitated something in his back and they also said it was very unacceptable of the nurse to do that.  They sent  him for another ct scan today. This time they did not use contrast. And they also did an ultrasound on both legs to make sure they were free from blood clots.  All we're waiting for are the ct results.  I plan on going to the hospital in the morning to catch the doctors and ask all the questions that Rassie forgets. 

For now, all I can say is Keep Praying! 

The weekend

Rassie's white count was down to 17,000 today. I cannot believe what progress he has made with that.  The Doctors are very impressed.  It makes them a little less concerned about the leukemia for the time being so that they can focus on his back injury.

Speaking of his injury.  Things are about the same. No feeling in either foot, except for the tingling.  And the right leg is still numb.  He still has lots of pain and is unable to stand or walk.  He has a knot on his lower back where the cable hit him.  It seems to be getting bigger.  The physical therapist seems to think it is fluid build up.  Dr. R said she doesn't think its fluid and she will let the nueroligist know tomorrow, Monday.  So, pretty much the only progress that has been made is Rassie is able to move himself to and from a wheel chair.  He does need some help though moving his legs from the bed to the wheel chair and vice versa.  He is not able to stay in the wheel chair long or both legs go numb and start swelling.  I am really hoping for some answers and some improvement soon. For now, all I can do is support him and Pray. 

So....

Today's white count was down to 26,000!  I am so excited that Rassie is doing do well on the hydroxyurea.  I am still ancy about the whole leukemia thing.  There are still questions I want answers to. Dr. R came by again today. She is going to see if she can get Dr. O (the lady who is going to be Rassie's oncologist) to come by and see him while he's in the hospital since we have no idea how long he will be there.   We did have someone stop by the room today and she mentioned that the oncologist deptartment is still working with the insurance to get the Gleevac covered.  Hmm, that's news to us.  But we did miss Monday's appointment and all that good stuff so who knows! *fingers crossed*

The back injury - Rassie seems to be moving his upper body a little better.  It is still really painful to do so because obviously your back is part of that!  He got to sit in a wheel chair for a while today.  He didn't sit long because sitting straight up puts more pressure on your back and it really got to him.  It also made his legs go completely numb.  Rassie's right leg is still pretty numb and lifeless. The good news: it feels tingly which means he does have feeling in it.  Now if we could just get his back feeling better maybe the feeling in his legs would come back.  The nuerologist explained what happened to Rassie's back like this: ' Think about when you hit your funny bone, how your arm goes numb and tingly for a minute or so.  Well Rassie's injury is like a badass version of that.  The cable hit his back causing his leg to go numb and tingly'   He said they would hope it would get better anywhere from a few days to a week or so. 

The MRI came back and it confirms a herniated or slipped disk.  The neurologist said the slipped disk doesn't really explain the numbing of the leg and only part of the extreme pain in the back.  But, the cable hitting Rassie in the back does explain his symptoms.  So I guess we're still at a stand still with what is actually wrong?

The physcial therapy physician came by this afternoon.  She is hoping that we can get Rassie moving a little more.  That will get him from the acute care unit to the rehab unit.  Once he is in the rehab unit they'll work on helping to get him even more mobile so that we can move him home.  She thinks its in our best interest right now to wait until the pain he's having subsides some and he can move himself around more easily (from bed to wheel chair, etc) before we consider moving him home.  They are taking into account that we have 2 small babies at home already and it would take too much out of me to have to care for him too.  Which is a good thing. Man oh man am I ready for him to come home!   But I will do whatever it takes to get him better. And I will wait as long as we need to make sure everything is ok.

Even Lower

Rassie actually got to see Dr. R this morning. She is a resident and this week she is doing rounds in acute care where Rassie is.  What a coincidence.  His white count what down even lower! 30,000.  So amazing.  She went ahead and lowerd his dosage of hydroxyurea. Great news.  I am so happy about that.  We haven't gotten a chance to call over to oncology yet and set up another appointment to get things rolling there, but we will.

As for the injury.  I was so happy to see Rassie this morning and so were the kids.  A few doctors came in while I was there. I didn't catch their names. There have been so many names to keep up with lately.  They ordered another MRI and they are also going to do a nerve study.  He is still having a numbing sensation in his right leg.  He could not wiggle his toes or bend his ankle.  They also poked him with a safety pin all the way up his leg and he could not feel it until they got to the outside of the upper thigh.  Yikes! Good news is when they hit it with the little hammer thing (name?) to check his reflexes they are good.  But this is what the nerve study is for.   For now, they are thinking that the slipped disc is pushing or pinching a nerve and causing this.  We will know more once we get the results of the MRI. (which was ordered at 11 am and he was in by noon, it didn't take over 24 hours, yay!)  I am hoping no surgery is needed but we will see.   Occupational and Physical Therapy have already made a trip to his room.   They moved his legs around for him as much as possible without hurting him.  They also had helped him to stand twice.  It was VERY supported standing and caused a lot of pain. So like I said, it was only done twice.  Physical Therapy will come everyday and Occupation Therapy will come every few days.  Once they get him doing at least 3 hours of physical therapy a day the doctors will decide whether or not he is ready to come home and be seen on an out patient basis. 

That's about it for now.  Just waiting on results and still need to reschedule oncology appointments.  Thanks to all of you who have said a prayer for us.

A Good Update

During the middle of everything going on with Rassie's accident I forgot to update on the good.  According to the ER doctor on Sunday, Rassie's white count was 56,000.  Thats down about 300,000 from where it started and that is AWESOME in my opinion. It is a big relief to see such progress.

On another note, Rassie is being transferred home to S&W hospital as we speak.  We are both extremely happy about that. At first JPS was releasing him completely and said he could come home! But the had not even done a PT workup and Rassie cannot get out of bed by himself or walk so that was not a good idea.  He still has numbness in his right leg and extreme pain in his back but he is feeling better.

Once he gets to S&W we will be able to reschedule his oncolgy appointment and see what we can do about getting him a new script since his was left at work when he got injured and no one can seem to find it. I am so excited to see him in the morning!

The Day We Found Out

I was just going through pictures on my phone from the day we found out Rassie had CML.  I thought I would share.

The first one is my visitors pass from the ER so I could go back and see Rassie. I had no idea the news I was about to face.

This one is of Rassie. He didn't realize I was snapping his picture and wasn't all that happy about it either. But I told him not to worry. It was just his face and he looked fine. I love him no matter what!

This was our view from NT806.  You can see the old part of the hospital.  The sky is such a beautiful blue.

And this next picture is actually from the day Rassie got discharged. Our 2 sweet babies waiting to bring Daddy home. We were all worn out and ready to be home for good.

A few answers on the accident injury

JPS actually got Rassie in for an MRI last night and he got to se a nuerosurgeon today.  He has a chronic slipped disk in his back.  They let him take off the neck brace and sit up.  They are also feeding him finally. It's about time. I know he was starving.  Today is the first day he has had anything to eat or drink since Saturday.  Yesterday they finally gave in and let him have a few ice chips but other than that he was getting nothing but a saline drip.  

The nuerosurgeon suggested transferring Rassie to Scott & White because his recovery will take 4-6 weeks and it would be better if he were closer to home.  Because if they do let him come home he will need extensive physical therapy and we can't drive back and forth 2 hours one way everytime he has a pt appointment.   But, once Rassie get's here to Scott & White their treatment may be different than what JPS would do. So it's just a wait and see situation.  Right now we are waiting for the transfer to be approved. It is a whole process of JPS calling S&W and getting a doctor here to accept Rassie as a patient. Getting dishcharge papers from JPS getting and ambulance transport in between 911 calls and finally the trip down here.  We are pretty sure since it's already 8 pm that the transfer is not going to happen tonight but are really praying it does tomorrow. So keep us in your prayers for an approved transfer and a safe drive down here.

Rassie's employer is also giving us trouble and saying Rassie was admitted to the hospital due to a personal illness and not because of his injury at work. We are trying to get that worked out and are considering talking to an attorney. We already have a few picked out that we are going to call for a consult to see if we want to go any further. Maybe just the consult will get his employers on the right path and stop them from denying him workmans comp during his recovery.

Bad News

Rassie was supposed to go in for weekly labs today and his first two outpatient appointments for his leukemia.  He didn't make it. I had to call and cancel.  It explains everything below.

Let me start off by saying the bad news is not about Rassie's CML. 

This past Saturday night / Sunday morning Rassie had an accident on the oil rig.  He injured his lower back.  From what he has told me, it was between 2 and 2:30 am.  He slipped on wet oil based mud and his feet came out from under him but he never actually hit the ground because the other guys threw his tongs and there was slack in the cable and it came back and slapped him in the back picking him back up onto his feet before he could fall all the way.  I know you guys have no idea what I am talking about and don't worry I don't really know what exactly everything is but I do understand that this is a very strong cable and slapping someone in the back can cause major injury.  So let me finish.  Rassie was in a lot of pain and told his driller who then told him to go down and tell the pusher (the boss).  So Rassie (with his back injury) had to walk down a steep flight of steps to the pushers shack.  Here he was not feeling so well and needed to sit down so he took a seat on the step outside the pusher's shack (trailer/office) After about 30 minutes of agonizing pain he realized he could not stand up.  He was left sitting in the misty/rainy weather until almost 4:30.  That's TWO hours.  Finally the pusher had 2 members of the crew come down and help Rassie into the change house where they set him in a metal chair.  He sat there until about 5:30-6 am when the safety guy made it out to the rig.  The safety guy just kind of picked Rassie up over his shoulders and drug him to the truck and then drove him to the hospital. 

I would like to stop for a minute and get out all of my frustrations.  If someone has a back injury DO NOT LET THEM WALK.  ESPECIALLY DOWN STAIRS!!!! They should have called for help right then and there.  And their 2nd mistake.  They waited FOUR HOURS until they took him to the emergency room that was I think 45 minutes away.

So they get him to North Texas Medical Center.  They do a CT Scan that shows negative. But Rassie is in a lot of pain and unable to move his right leg without the pain in his back becoming excruciating.  Not to mention he can't feel his right leg all that well.  They want to do an MRI but decide they need to send him to a trauma hospital.  Rassie requested Scott & White. They told him no and sent him to John Peter Smith Hospital in Ft. Worth.  NEVER USE THIS HOSPITAL. 

We have had nothing but trouble since Rassie got transferred to JPS.  They wouldn't contact Scott & White to get him back on his leukemia meds which I couldn't find at his job so he couldn't take them.  Finally after a day one nurse called and got the confirmation and dosage.  The first doctor in the ER told me it would not hurt Rassie to be off his meds for a day or two that they were only worried about his back injury. I was steamed!  Somewhere between ER and the Observation floor they lost the workman's comp insurance papers.  After waiting 24 hours the MRI had NOT been done because they only have one MRI machine and they do out patients before trauma patients.  Doesn't that seem odd to  you?  We spent all day today requesting to be transferred to Scott & White 1) for faster, better care 2) to be closer to home.  
The doctor refused to transfer. Want to know his reason? Because too much time would be lost and Scott & White would have to start all over.  Get this! They have had patients ordered for an MRI stat waiting for 2 days! And they are worried about another hospital having to start the process over when they haven't even started the process here other than pushing the pain meds to keep him passed out.  Every time we asked to speak to someone they would give him pain meds to knock him out.  We asked for a patient advocate and all she did was take the doctors side and then we caught them both in lies. 

We are stuck at a county hospital with a workers comp claim and in my opinino they won't transfer him because they know they will get paid no matter what for this patient.  Anyways! That's  my rant. I will let you know more when I can.  For now I am home with the kids because I couldn't get a babysitter past tonight.  So Rassie is 2 hours away, laid up in a hospital bed all alone and its killing me.

Please Please Please say a Prayer for Rassie and our family.  We are facing a lot right now.  Not sure when this storm will pass but I know we could use the prayers.

Wednesday Wishes

This Wednesday's Wish is to share time with the ones you
 love and to provide them and yourself
with memories
that will last more than a lifetime.

Rassie did that this week by spending time with his two sweet babies.

Daddy  & Lane watching the Cowboys Football Game

Daddy & Scarlett reading 'Daddy's Girl'

Our First Obstacle

I want to start off by saying that Gleevec, the pill they want to put Rassie on, costs an outrageous amount each month.  One that we cannot afford to pay.  And now after some miscommunication by the case worker on the 8th floor we face our first obstacle

Dr. H and Dr. R both told us it would take a while to get our hands on Gleevec. They said it would be hard to get the insurance to cover it and if we did get coverage the copay could be $500-$1000 a month.  Talk about a shocker!  The Monday before Rassie was discharged the 8th floor case manager came in and told us that the insurance had approved Gleevec and there was a $0 copay.  We were thrilled. It seemed way too good to be true but who were we to complain.

This past Friday we got a letter in the mail from our insurance company saying they denied the request for authorization of Gleevec.  What? How?  Yesterday and today we spent on the phone trying to get ahold of the case manager from the hospital.  We finally got her only to learn that "I didn't tell you that your insurance covered it" and then "There must have been miscommunication somewhere".  It had to be on her end. Rassie and I did not hear her say the same thing twice about being covered and having no copay.  But that's that.

Now we are supposed to take in a pay stub so we can try to get coverage through a program.  The first program the case manager is going to try is to get the pill company itself to pay for Rassie's prescription.  We are really hoping that this happens for us or that the insurance company changes their mind.  We do plan on contacting the insurance to see exactly why they denied Gleevec.  Rassie and I think that the insurance company may be under the impression that the Leukemia is a pre existing condition since we have only been with them for about a month.  And if that's the case and we can prove it was not pre existing maybe they will change their minds and provide coverage for the Gleevec. 

Please keep us in your prayers that one way or another we will get assistance to help pay for the Gleevec.  If we have to make a copay that is fine with us but without some type of assistance we will never be able to afford it.

Hydroxyurea - The Medication Currently being used

Hydroxyurea is the medication that Rassie is currently on to lower his white count.  It seems to be doing it's job.  Rassie's white count initially started out at 358,000.  As of this past Friday it was down to 150,000. 
We did have a bump in the road this past Tuesday.  Rassie's white count went up instead of down.  His dosage had to be upped from 4 pills a day to 6 pills a day.  Which means 2,000 mg a day to 3,000 mg a day.  I am very thankful for hydroxyurea right now and its ability to lower Rassie's white count so that he can be home with us, his family.

I have been researching hydroxyurea.  There are lots of articles out there. They do not all relate to CML so I kept searching until I found one that did.  I wanted a better understanding of what this medication is doing for Rassie.   Here is an article I found on WebMD that helps to explain it in much better terms than me.

Hydroxyurea
Generic Name: Hydroxyurea                    Brand Name: Droxia, Hydrea
Hydroxyurea is available as a pill you can swallow. It is also known as hydroxycarbamide.

How It Works
Hydroxyurea keeps cancer cells from growing. It is used to treat chronic myelogenous leukemia (CML) and, rarely, chronic lymphocytic leukemia (CLL) or acute myelogenous leukemia (AML). It is sometimes used to treat sickle cell disease or other cancer.

Why It Is Used

Hydroxyurea is used to treat CML and CLL because it works fast and does not cause many side effects.

How Well It Works
CML and CLL can cause your white blood cell count to get too high. Hydroxyurea can reduce white blood cell counts within 1 or 2 days. It can be used during pregnancy in many cases.

Side Effects
Side effects of hydroxyurea are generally mild and can include:

•  Low blood counts, which may increase the risk of infection and bleeding.  
• Nausea or vomiting.
• Loss of appetite.
• Diarrhea.
• Hoarseness.
• Fever or chills.
• Mouth sores (stomatitis).
• Blackening of the fingernails and toenails.
• Skin ulcers (uncommon side effect).
• Rashes.

What To Think About
Hydroxyurea should be used only under the supervision of a medical oncologist or hematologist. He or she will monitor your blood counts regularly.

Hydroxyurea is still an experimental treatment in children. Long-term effects of the drug on children are not yet known.

Learning about Gleevec

I don't know about all of you out there, but Rassie and myself are very curious about this miracle pill called Gleevec.  We want to know all there is to know about this pill that will replace chemothereapy, avoid a bone marrow transplant and keep Rassie healthy.  So far, this is what I have come up with.  There are several articles out there but this one does a pretty good overview of everything. 

1. What is Gleevec?
Gleevec, also known as STI571, is a new drug that was approved by the Food and Drug Administration in 2001 for the treatment of chronic myeloid leukemia (CML), a cancer of white blood cells, and for the treatment of a rare form of stomach cancer called gastrointestinal stromal tumor (GIST) in 2002. It was designed in the laboratory to target an abnormal version of a normal cellular protein, present in nearly all CML patients. The abnormal protein is much more active than the normal version and is probably the cause of the disease. By blocking the abnormal protein, called BCR-ABL, Gleevec kills the leukemia cells.

2. Why is Gleevec different from most chemotherapy drugs?
Gleevec represents a new class of cancer drugs and a new way of thinking about cancer. These molecularly targeted drugs are different because they target abnormal proteins that are fundamental to the cancer itself. Most current cancer therapies lack specificity, killing both cancer and normal cells. This is one reason why many people who undergo chemotherapy experience unwanted side effects from their medications. But Gleevec and other drugs in development are designed to zero in on specific cancer-causing molecules, eliminating cancer cells while avoiding serious damage to other, non-cancerous cells. In the case of Gleevec, the drug is targeted at the bcr-abl protein in CML cells. (Gleevec also affects other messenger systems in a cell which may contribute to its toxicity.)

3. What were the results of the previous clinical trials with Gleevec?
In June 1998, the first clinical trial of Gleevec was launched. This small, initial study sought primarily to determine whether Gleevec is safe in people, not its effectiveness as a cancer drug. However, as the doctors gradually increased the dose of the drug, they noticed dramatic responses in their patients, all of whom were no longer benefitting from previous therapy.

In December 1999, Brian Druker, M.D., and his collaborators reported the preliminary results of this early study. Their data showed that once patients reached an effective daily dose of 300 mg or more, 31 out of 31 patients had their blood counts return to normal, a sign that a treatment is working. In nine of the 20 patients who were treated for five months or longer, no leukemia cells could be found, which showed that the drug was eliminating the source of the cancer. They also noted that side effects were minimal in these patients. Such dramatic results are rarely seen in such an early clinical study.

In April 2001, Druker and colleagues reported the results of a larger follow-up study of Gleevec in the New England Journal of Medicine. They reported that Gleevec restored normal blood counts in 53 out of 54 chemotherapy-resistant CML patients, a response rate rarely seen in cancer with a single agent. Fifty-one of these patients were still doing well after a year on the medicine, and most reported few side effects.

4. What is chronic myelogenous leukemia, or CML?
CML is a disease in which too many white blood cells are made in the bone marrow. The bone marrow is the spongy tissue inside the large bones in the body. The bone marrow makes red blood cells (which carry oxygen and other materials to all tissues of the body), white blood cells (which fight infection), and platelets (which make the blood clot).

Normally, bone marrow cells called blasts mature into several different types of blood cells that have specific jobs in the body. CML affects the blasts that develop into multiple cell types in the bone marrow, including the white blood cells (granulocytes). The white blood cells do not mature normally and become too numerous. Immature white blood cells are then found in the blood and the bone marrow. Most people with CML have an abnormal chromosome, known as the Philadelphia chromosome, in which segments of chromosomes 9 and 22 are fused together to create the abnormal protein at the root of CML.

CML is diagnosed in about 4,500 Americans each year, usually people who are middle-aged or older, although the cancer also can occur in children. In the first stages of CML, most people don't have symptoms and the disease progresses slowly.

Treatment with interferon alfa may produce partial or complete remissions in chronic phase CML, restoring normal blood counts in up to 70 percent of patients. Complete cytogenetic responses (disappearance of cancer cells) have been reported in up to 20 percent of patients with a delay of disease progression and prolongation of survival. Bone marrow transplantation in the chronic phase is the only treatment known to cure CML. However, many patients are not young or healthy enough to tolerate a transplantation or don't have a suitable marrow donor, and the procedure can cause serious side effects or death.

5. Is it possible to target abnormal proteins in other tumors with molecular-targeting drugs?
Yes, provided that the target is correctly chosen. It is important to note that Gleevec builds on an observation that was first made in 1960. Scientists then had just learned how to isolate and study human chromosomes, and they noticed that CML patients often had an unusually small chromosome that is not found in other people. They named it the Philadelphia chromosome, after the city in which the research was conducted. This set in motion decades of work to determine its cause, which was eventually found to be a genetic mistake in which segments of chromosomes 9 and 22 stick together to form the Philadelphia chromosome. The bcr-abl gene is located at the place where chromosome 9 and 22 are fused together.

With the emergence of gene cloning technologies in the late 1980s, scientists later isolated the bcr-abl gene and characterized its aberrant, cancer-causing protein. By the early 1990s, scientists at CIBA-Geigy, later Novartis Pharmaceuticals, were able to use this well-defined target to create Gleevec, designing it to shut off the BCR-ABL protein in people with CML.

Given the success of Gleevec and the recent explosion of powerful molecular technology now available in cancer research, scientists are searching intensively to discover the correct targets in other cancers. At NCI, for example, several initiatives are under way to accelerate the discovery process. These include: Cancer Genome Anatomy Project; Director's Challenge: Toward a Molecular Classification of Cancer; the Molecular Targets Initiative; and Molecular Target Laboratories.

6. Does the approval of Gleevec mean that scientists now will stop studying the drug after only a few clinical trials?
No. Though the results of the first clinical trials have been dramatic, many research questions remain to be answered. These include:

• How long does Gleevec control CML?
• Does Gleevec actually cure patients of CML? Or, does the drug delay the onset of more advanced forms of the cancer? If so, how long does Gleevec keep CML in check?
• Can the effectiveness of Gleevec be enhanced in combination with other drugs?
• Why does Gleevec not help all people with CML?

Because Gleevec is a molecularly targeted drug, it will only be effective in cancers in which a target protein is present and involved in causing the tumor. In addition to BCR-ABL, Gleevec may also target the cellular proteins c-kit and platelet-derived growth factor receptor (PDGFR). Several clinical trials with Gleevec are already under way to find other tumors that might respond to Gleevec. Currently, these tumors are: gastrointestinal stromal tumor (GIST), glioma, and soft tissue sarcoma.

7. Where can I find out more about clinical trials with Gleevec?
There are several options. By telephone, contact the NCI's Cancer Information Service at 1-800-4-CANCER (1-800-422-6237); deaf and hard of hearing callers with TTY equipment may call 1-800-332-8615. Or, on the Internet, visit the Clinical Trials section of the NCI's Web site. It provides a comprehensive list of clinical trials now under way to study Gleevec. The Web site address is: http://www.cancer.gov/clinicaltrials/search. The site also contains helpful background information on Gleevec.