Myelodysplastic Syndrome

Myelodysplastic Syndrome, also called MDS for short is a fairly rare disorder of bone marrow failure.  It can affect your red blood cells, white blood cells and platelets, any one, two or all three in some cases.  It is usually found in a routine blood work up due to the fact that is has no real symptoms that typically occur with other cancers.  You may have shortness of breath and fatigue.  Since this disorder usually strikes the elderly (not always though), it is often over looked as a natural aging process, which is what the case was with my Mom.  She thought maybe it could be due to her heart since she has two valves in her heart that leak and her heart doctor passed her with flying colors.  Upon her routine 6 month checkup she found out differently though.

My mom who had always enjoyed a very healthy lifestyle refused to go for 3 month check-ups once she aged because of her health being so good.  I CAN'T URGE ANYONE age 60 or older or with chronic illnesses enough to let your doctor check you every 3 months when they want to.  These are the critical years where things start cropping up that could be found sooner, treated and have much better outcomes should you have those regular check-ups.

Mom found out her blood results were abnormal around October 22nd, , the next week she was sent to a hematologist/oncologist and was given a bone marrow biopsy the next day.  The results on Nov. 3rd was high grade Myelodysplastic Syndrome with all 3 penias (meaning it affected her red & white blood cells and her platelets).  She was started on injections of chemotherapy on Nov. 9th.  Her chemo cycle was to be 7 straight days of chemo with 28 days off and then 7 on, etc.

After the first round of chemo the first week went well.  Then on Nov. 24th she was given a blood transfusion because her cell counts became too low.  On Thanksgiving day she started running a fever and had to go to the ER.  Her doctor had informed her that if she ran a fever of 100 or more to go to the ER and call him because it could be an infection.  Since she didn't have enough white cells to fight an infection any infection could be life threatening.  The same goes for a cut because she doesn't have enough platelets for her blood to clot.  She was hospitalized from Thanksgiving day until Sunday Nov. 28th.  She was still running a temperature on and off but they let her go at her request with a promise of follow up labs the next day and keeping her Tuesday appointment with her doctor.

She made it through Monday and most of Tuesday and the fever came back, she was rehospitalized on the 30th of November. On Dec. 1st another blood transfusion, each time getting 2 units of blood.  The hospital she was in was terrible.  They lacked in ER protocol for her being a neutropenic patient, taking her through the entire ER without a mask and gloves to isolate her at the end of their hall.  The nursing staff consistently handled her without using gloves and masks and once in her room we found a dirty washcloth from a previous patients stay.

On Dec. 8th the on call doctor decided it was time to transfer her to a hospital that had an infectious disease department to ensure there wasn't an infection.  Sometimes your white blood cell count can get so low it in itself can cause your body to think it has infection when it doesn't but they needed to know for sure since an infection can be life threatening....what an ordeal this was!

They wanted to transfer my Mom to Bristol, TN., she wanted to go to UVA which we had been to many times with my Dad's cancer, tumor removal and my nephews brain tumor and removal.  They told her it would take too long to get her in there.  Her second request was Roanoke, Va. where the doctor proceeded to tell her he would set it up.  He set it up all right...to Bristol where he wanted her to go.  She had called me around 10 to tell me what was happening and while getting her a shower the ambulance showed up.  I mentioned to them about going to Roanoke and they said the paperwork was for Bristol.  I argued with the nurse and she paged the doctor who came down to talk to me, he said he had it all set up again, yes, still to Bristol.  Mom refused to go and they finally agreed to bring her to Roanoke.  She is now in Lewis Gale hospital which is technically in Salem, Va. but on the border of Roanoke.

She has had one blood transfusion again with 2 units of blood in this hospital.  They are trying to tag her blood for a test called an indian test where once tagged the blood is treated with some type of nuclear agent and then placed back in her body.  After giving it overnight to circulate through her body she will be given a full body scan which will show any infection that may be in her body.  Hopefully this will resolve the issue of if it is infection or low counts giving her the on and off fever and she will soon get to go home.  Her blood counts have to go up for her to continue chemo treatments and I need to find out what levels we are waiting for.

We have people praying around the world, many individuals, many churches, all nations and nationalities.  I want to thank everyone for their prayers, many do not even know us, just of our story.  Prayer is a powerful tool for a Christian and we believe in it's power and we are leaning on GOD for guidance and strength every step of the way!  I CAN'T STRESS THAT ENOUGH EITHER! AMEN!

I will try to update as often as I can.  When Mom gets out we'll be traveling 3 hours back to her home and I'll be staying with her there.  From now on though when she gets a fever, she is getting a tylenol and a trip to Lewis Gale hospital, not to the Richlands Clinch Valley Medical Center where she started out!