Not Much News to Report

I know it has been awhile since our last post but we were waiting for some news to share. While really it seems we just have 'more of the same' to report on, I know that many of you may be wondering what's been going on. The trip to the Kennedy Center was really Mom's highlight for the month of March. Mom, unfortunately, was too sick to make it up to New York to see Jersey Boys on Broadway.

Shortly after returning home from VA Mom's sinuses became out of control and the doctors scrambled to tweak her cocktail of antibiotics and steroids to help clear up the infection. In the mean time Mom had been doing her labs twice a week and the oncologist noticed an upward trend of Mom's white count; it jumped from 20 to 59 in about a week's time. The leukemia cells were apparent in Mom's blood but with the raging sinus infection the doctors were hesitant to start any chemotherapy for the leukemia. Porter and team started mom on Hydrea, which is a form of mild chemotherapy that helps to suppress the white blood count but can also cause red blood count and platelets to drop as well. It seems to be working somewhat and mom's white blood count remains in the 30-35 range. Mom said she's starting to feel that abdominal pain that was so distinct prior to her diagnosis towards the end of 2005. She's anxious to get treatment going but there's a lot that needs to fall into place.

They've been slowly trying to ween Mom off the prednisone again. She was back up to 60 mg after her last hospital visit. Since steroids can also mask an infection, they've been trying to reduce the amount Mom's taking and hopefully get her off them completely. As she lowers the dose, the back pain seems to increase. Steroids have that magical way of preventing Mom from feeling a lot of her aches and pains.

Mom sinus troubles continued until she met with infectious disease doctors last week, who seem to have found the winning concoction of medications for Mom. Mom is still congested but no longer has raging sinusitis. However, in the last two weeks Mom's dizziness has struck with a vengeance and her hearing continued to deteriorate. If you recall Mom's already completely deaf on her right side. She's now having great difficulty hearing on her left side as well. This is a cruel joke to Mom, who loves chatting and catching up with friends on the phone when she's not well enough to get out of the house. Most of the time she needs one of us to even interpret the messages on the answering machine. The dizziness is also affecting her eyesight, so instant messaging or texting is out of the question for keeping her in touch with folks.

Mom's dizziness has made her so unstable at times that we are all hesitant to leave her alone. She has taken a few falls but luckily has not been hurt. She's using a walker to get around a lot of the time and last week the boys had to transport her around HUP in a wheel chair. At its worst last weekend Mom was unable to stand due to the spinning room. Her nausea also continues to be a problem. Since the vertigo fluctuates it is difficult to predict when Mom will have a good day or have to spend the day in bed.

We met some of the HUP team today. It is becoming unclear if all these symptoms are a result of the leukemia being active or something else. Previous tests for leukemia in the brain and sinuses (as recent as three weeks ago) have returned negative. Dr. Porter has ordered a lumbar puncture and spinal tap to once again rule this out. He's also having Mom follow up with a neurologist to see what they may have to offer. The doctors are also a bit worried that all the chemo could have caused some of Mom's symptoms. Once the neurologist gives the all clear, Mom will begin a course of chemo via IV Vidaza sometime after Easter weekend. Mom will likely have another PIC line put in sometime next week in preparation for the chemo, and to make labs a bit easier on her.

After seeing Porter, we went to visit Dr. Chiu who is Mom's ENT that performed the sinus surgery last year. He confirmed that the sinuses were looking better. He had no idea what to say about Mom's hearing and dizziness except that he was adamant the sinuses were not the culprit. He agreed the neuro consult was a good next step.

So Mom is housebound again. We're doing all we can to keep her comfortable and she's sleeping a lot. Dad got Mom these great TV ears, have you ever seen them? She's able to sit and hear the TV which is a plus. Thanks also to the friend that suggested the amplifier from Radio Shack. Mom says it works well although today at one of the doctor visits the doctor told Mom he reminded her of Warren from Something About Mary. She's got the old school headphones on with what looks like a tiny version of a walkman on a lanyard around her neck. Mom couldn't completely hear him or understand what the joke meant. Dad is going to look into some other hearing device options this weekend.

Don't get me wrong, Mom still has her fighting spirit. She's still attempting to mop up the floor and vacuum TWICE a day, because you know, that's just one of her quirks. Dad threatened to 'cut the cord' of the vacuum if she did not knock this non-compliant behavior off. Apparently none of us can clean like she can. The house (to me, home with two little kids) is immaculate. My house could never look like this, even on its best day. Mom's also resisting taking many of the medications that could make her feel better (because none of us are nurses and have to stop telling HER what to do!). Porter asked today that Mom begin journaling her medication (something we did for her in the Fall) so he could get a better idea of what she's taking. Sometimes we'll even put something out for her to take, she'll claim she took it, and then hide it away for 'an emergency.' Unfortunately, once things wear off, the 'emergency' comes fast and furious and poor girl is so miserable. One day this week when she actually took the medications she needed, she moved better, could hear better, and didn't need quite so much rest. She was impressed with her progress, encouraged, but then let everything wear off.

Mom says to tell you all she's sorry if you've called the house and she hasn't returned your phone call. It's most frustrating for her to not be able to talk on the phone. It is very hard for her to hear and I think it upsets her when she answers the phone and cannot communicate as she would like. Thanks to everyone for your cards and special notes for Mom's birthday. She (and all of us) are so very blessed to have you in our lives.


Love,

Jess

You Gotta See it to Believe it!

 

I was pinching myself all weekend - mom came to VA for a quick visit to help celebrate Emma Grace's 3rd Birthday courtesy of Uncle Mike, one of mom's personal chauffers. Aunt Laurie joined us for this special visit during which the three of them showered Emma with presents, cake, and a special visit to the Kennedy Center to watch the New York City Ballet. It was an amazing 24 hours - during which I reached out to mom numerous times just to remind myself she's really here - eating brunch on the Roof Top Terrace, sitting next to me in the Opera House, tidying up my kitchen. We said a few times how three years ago we were praying she'd get to meet Emma Grace; and now here she is - taking her to the ballet as she had always dreamed.

I just had to share with you all as I know you check the blog to see how mom is doing from time to time. There are not any real treatment updates at this time. Mom's got a good bit of leukemia in her blood; battling the sinus infections, nasty cough, and nagging low grade fevers; her new goal is to put off the next round of chemotherapy until she heads to NYC for Jersey boys in a few weeks. Hopefully with the cocktail of antibiotics and inhalers the wonderful HUP team has her on she'll be able to hold off until then so she is well enough for the show. We'll keep you all posted as we learn more.

Thanks to all for your posts, cards, calls, prayers, facebook wall updates; everything you do to help keep us going. For more photos from the weekend you can access them by clicking here .

Lots of love!