Bittersweet

This past week, Daddy's little girl, started school for the very first time.  It was exciting and hard all at the same time.  Our first born was old enough to start Pre-K.  Boy how time flies.  Luckily,  there were no tears.   Scarlett was our little champ.  She walked right into her class room, all smiles.  She hesitated to sit down at first, there were only seats next to the boys left.  But, she did sit and started coloring.  With a big smile she waved good bye and that was that. 

 

Lane was a good sport as well.  Being only 3 he is not old enough for Pre-K this year.  However, he was deteremined he was going to school as well.  He was so handsome dressed up in his little school clothes. We had to find him a backpack like Sissy's and he had to wear it into the school just like her.  After dropping Scarlett off he said we were going to his school.  We explained he wasn't old enough.  He was ok with that.  His one little worry was lunch and who was going to feed Scarlett.  Once we told him she would eat at school he was fine.  He's been happy with Daddy and Lane alone time while Sissy is at school.

 

We are so thankful for the treatments Rassie has received.  We are overjoyed that he is in clinical remission.  Even more so, we are so BLESSED that he is able to be here with us through these Bittersweet moments of watching our children grow.

 

God Bless

Out With The Old, In With The New

Rassie and I finally made the decision for him to switch oncologists.  It's been something we have been thinking about for a while now.  At his last appointment the doctor he was seeing, well lets just say Rassie had had enough!  We were already upset over the whole Gleevec incident.  Let's face it. If the meds are working why say they're not doing their job and try to change them? But, this was a whole new problem.  His oncologist had said the Gleevec was making his Triglycerids high and high they were.  He went into the last appointment with labs that read critical across the top in red!!! Yep, they were that high.  And what did little miss doctor do?  Tell him to take lab paper and try to get in to see his primary ASAP.  No referral, no calling herself to get him seen, nothing! Rassie's on the verge of a heart attack and she wants to send him on his merry way.  So, when he got to the check out desk to set up his follow-up appointment he switched docs.  We see the new one in September.  We both feel that this will be a good change.  As for his triglycerids, Rassie saw his primary and was put on a med to control that.  In one months time his numbers have dropped by half.  The doc told him to keep up the good work. It was good news :)

Light The Night

We still plan on walking in November for the Leukemia and Lymphoma Society's Light the Night Walk.  We are planning a few upcoming fundraisers for Team Rassie! (original I know :) )  Hopefully we will have a game of washers set up in September when the weather is a little cooler.  We also have to local businesses so far, willing to put up the Balloon Kits.  The Shell Station on Adam's/Apache Dr and Corona's  (Mexican Restaurant). We're excited about participating in the walk for our 2nd year!

God Bless Everyone

Back to the Old

Rassie had his follow up with the Oncologist this past Thursday afternoon.  Apparently, his levels are not going up quite like she thought they were, the side effects from the Tasigna were completely gone and she decided it would be perfectly fine for him to go back on the Gleevec.  Praise the Lord.  I am so thankful that he can go back to something familiar, that we know and are comfortable with.  Most importantly, a chemo drug that is actually doing it's job and still working the way it should!

Galveston, Texas

Babies 1st Beach Trip!

Not Liking the New Med

So, Rassie and I are not really liking the new med, Tasigna, that the doctor put him on.  I'm not sure I like the doctor he under now.  The doctor he was seeing moved out of state, the doctor he is seeing now... she has changed the test he takes to check his BcAblr.   She says the new test shows his numbers going back up. BUT, he is still in clinical remission so overall it's extremely minimal changes. So, she changed him from Gleevec to Tasigna.  She has also changed other meds. They do the same things as the old meds.  The only difference?  The new meds are name brand with no Generics.  Tasigna was not what she originally wanted Rassie taking.  We couldn't afford the co-pay of the chemo pill she prescribed and even with co-pay assistance it was outrageous.   I just have a bad feeling about this doctor. 

So, let me get back to the Tasigna and why it's not well liked around here (meaning Rassie & I).  Rassie was only on it a few days when he started having shortness of breath and chest tightness, headaches that wouldn't go away and body aches.  It was like he had the flu.  Now, I know it was a new med so there were bound to be side effects that were going to show their ugly face during the first little bit.   Rassie had tried calling the doctor to ease his mind.  She was off for the Holiday weekend.  Next, she was at a different clinic.  Then  the nurse  called back.  She told Rassie it sounded like he just didn't like the new med and not to take it. She never let the doctor know to call.  Anyways, after a week several phone calls trying to get a callback from the doctor and a call to the supervisor, Rassie's doctor finally called him back on Saturday.  She told him to stop the Tasigna immediately and come in Monday at noon after doing labs/bloodwork that morning.  She seemed really concerned. Monday morning rolls around and Rassie heads to the lab for bloodwork.  There were no orders yet so he ended up seeing the doctor first.  She mashed around on his chest causing more tightness and shortness of breath.  She ordered a stat echocardiogram (ultrasound of the heart), chest x-ray and labs.  Thankfully, everything came back normal.  The doctor told Rassie to stay off of the meds for the next week and a half to see if they were the true reason for the side effects.   He has another appointment with her this week.  So far, there have no ill effects going on.  No headaches, no chest tightness, breathing is normal, no more body aches.

The doctor seemed extremely negative about putting Rassie back on Gleevec at a higher dose.  I really do not understand why.  Hopefully, at this next appointment things will go better.  Either way, Rassie is putting in for a change of care.   Neither of us care for this specific doctor very much.  I have only met her one time and she didn't even say hello or introduce herself to me.  Rassie tried to introduce us.  She just turned her back, said "yep" and walked off towards the exam room.  It was extremely frustraing.  And really lacked the compassionate care we were hoping for. 

CML is not Strep Throat.  It's not a once a year well -check. It's not an in-and-out thing.  It's an all the time thing. Rassie and I feel like he needs a doctor who is compassionate about their work AND their patient.  We have a great doctor in mind and we're really hoping that he will take Rassie's case.

God Bless!

Hi there Family & Friends.  I have not blogged in quite some time.  The last time I did, we were fundraising for Light the Night.  We participated.  It was great to get out and meet others in similar situations.  We were PROUD to support the cause.

Rassie and the kids at the 2011 Light the Night Walk in Austin.

We plan on participating in the 2012 Light the Night Walk as this year in November!  We have already set up our Team Rassie Page.

So, things are going well.  Rassie is still considered in clinical remission.  He is seeing a new doctor.  She has switched him from Gleevec to Tasigna.  We still have a few questions about that and so I will be tagging along to his next Oncology appointment.  I do know that the Gleevec was leaving his triglyceride levels high and that was cause for concern. 

His paralysis seems to be doing good as well.  We had a set back in April.  Both of Rassie's legs went numb again.  It scared us both! His doctor seems to think it was a spasm in his back that irritated the damaged nerves and caused the paralysis again.  The feeling did come back after about a week.  We were very, very thankful for that.  Rassie's doctor says there are no promises that these spasms will not happen again in the future.  But for now we seem to be in the clear. There is still numbness in his right leg from the knee down.  Rassie continues to wear an athletic type knee brace for this.  This past weekend Rassie had some muscle cramps in the calf of his right leg.  We are optimistic that this will bring back all feeling in that leg soon!

Fundraiser - Light the Night

Hey there Friends and Family.  Help support those fighting Leukemia and other blood Cancers.  Rassie and I are participating in the Light the Night Walk.  (To learn More, go to www.lightthenight.org)  We have created our only little family team and we need your support!  Our personal team goal is to reach $200 by October 20th before the walk starts on October 22nd.  We have an swesome friend who is willing to help.  She has opened up a Scentsy Party online.  20% of the total sales (before tax and shipping) will be donated directly to our team fundraising page. ( Team Rassie's Fundraising Page or you can donate yourself on the fundraising page). 

The link provided below takes you directly to the Scentsy Party that was created for our Light the Night Fundraiser.

Light The Night Scentsy Fundraiser <- Click here
Thanks for any and all continued support.  Whether it be through donations or prayers.

Light the Night

I am excited to announce that Rassie and I will be participating in the Light the Night walk this year. And hopefully many more to come.
This is a great way for us to celebrate in Rassie's remission and to honor those who are still fighting against blood cancers.

You too can help.
Help to honor those lives already lost.
Help to give strength and encouragement to those still fighting.

Our local walk is October 22nd, 2011 in Austin, Texas.
There are two ways you can help in supporting our cause.
1) By Joining Team Rassie and walking with us.
2) By making a Donation on our Team page.

Thanks for your continued support in our Journey.

God Bless,
Amber & Rassie