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!

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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!

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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.

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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! 

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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.