Hello Everyone ~ Here is the latest on Miss Malia as told by her Mom. She is dressed up here as Dorthy in the Wizard of Oz - this is what she is hoping to wear for trick or treating Friday night --
WEDNESDAY, OCTOBER 29, 2008 11:10 AM, CDT
Malia had her clinic follow up yesterday and it presented a couple of “potential” speed bumps. Nothing major but we discovered that her ANC has dropped dramatically. Once again she is in the “extremely susceptible” window. Can you believe that it dropped from approximately 9,000 to only 162 in five (5) days?! Just goes to show how powerful those Neupogen shots were. She’s already started producing monocytes (not a whole bunch but some) which is the first thing that starts to come back before the neutrophils so we’re hoping next week she’ll have much stronger numbers. Of course we have to be very careful and I asked A, our nurse, if we could still take her trick or treating on Friday. She was hesitant but she knows how much Malia has been looking forward to dressing up so she just said, “It’ll be outside, she’ll be outside so she’ll be okay…that’s what we’ll go with…”. We just need to be careful and same thing with Makena’s birthday party at the park on Sunday. A agreed with that.
Malia is officially in the monitoring phase. With solid tumors, they don’t use the term “remission” rather “no evidence of disease” which is essentially the same thing – just different terminology. So Malia officially has “no evidence of disease” which is a fantastic feeling! The order for her port removal has been submitted, we just need to schedule it. I’d like to have that done in the next couple of weeks so we can get on with a normal life. We’ve already eased off some of her regular meds and the first night that we had just her magnesium and mouth care she said, in a very chipper and shocked voice, “…just one! Only one medicine!” with the biggest smile on her face. She got very silly after that. It was wonderful to experience. We’ll still have to continue with the meds though until her counts recover completely (hopefully next week). She’ll still have to continue with the Bactrim, however, for at least 3 – 6 months since her immune system will be compromised for 6 – 12 more months.
The other potential speed bump that we encountered yesterday was her hearing test results. Before we started chemo they did a baseline test on her to record what damage the chemo would do. We knew that she would definitely experience some hearing loss in the higher frequencies. This loss would not be at the conversational level but every child is different so it’s something they monitor. That baseline test had results at all frequencies in normal ranges. Her results yesterday showed that she took a significant hit to her hearing. There was a pretty big change L. Right now she’s borderline – she is not a candidate for hearing aids but there still could be some changes to her hearing in the coming months as the chemo is still being release from organs that had absorbed some during the treatment. They will want to monitor her closely so we’ll have to go in for another test in a few months. Right now, the level at which her hearing shows some deterioration could affect her speech and language skills. Many of you know how articulate she already is for a 3 year old so hopefully it won’t be an issue. They advised us that we should watch for her starting to have problems hearing soft sounds, like whispers, or if she stops using the “f” and “s” sounds in her speech. Those would be the first areas that would probably be affected that would be noticeable.
That’s the latest for now. Pray that this weekend will not introduce her to any exposures that result in another trip to the hospital and that her counts recover by next week’s appointment, her port removal is scheduled for shortly after, and she heads into the Holidays as a cancer free, post chemo survivor that is growing her hair back, gaining energy and is nothing more than a happy little girl who visits the clinic monthly for checkups. That’s what we’ll do!
Much love and hugs to you all!
Thanks to all of you who continue to follow Malias courageous battle, who keep her in your thoughts and prayers and continue to remember her with your hand stamped cards ~ ~ I appreciate all of you ;o)