Kate's Audiogram Update

It's hard to describe today in just one word. My heart has felt disappointment, an incredible sense of relief and gratitude, fear and anxiety, and overwhelmed. Through out the day tears have been close to the surface, and there has been a pit in my stomach. Yet, this evening, the pit is gone and by the grace of God, I feel more peaceful and able to wait on God and trust Him with the next thing whatever that may be. Nothing has ever left me feeling more dependent on God, than Kate's illness. It is totally out of my control and in many respects out of the realm of the doctors' sphere of control. This is a situation so big, that only God can handle it. Was it a bad day? No. Was it what we had hoped for? No. Bitter sweet probably best summarizes the day.

Kate's check up with her neuro-oncologist gave us cause for praise for multiple reasons:
~Kate's counts were all good and her weight was up.
~Kate's urinalysis showed just traces of blood and a significant decrease in the RBC's to 4-6 down from last week's 40-60. That is a good indicator that the BK Virus (which was confirmed by tests last week) has just about run its course. Kate's doctor was very pleased with these results. It was the weight of what she said next that later in the day brought both Kate and me an overwhelming sense of relief and deep gratitude to God for his healing and protection of Kate in regards to the BK virus. I explained before that the BK virus attacks the lining of the bladder causing it to bleed and other UTI type symptoms. Again with a virus, we can only treat the symptoms as a virus must run it's course. Kate's oncologist told us today that the fact that the virus symptoms are about gone and that Kate is finally beginning to feel better is a true answer to prayer. She went on to say that we had "dodged a huge bullet" in that Kate was recovering from the virus without any huge and very far reaching side effects. She told us they have had kids lose their bladders and end up with a colostomy because of the BK virus. She told has Kate's viral counts had been very high - in the billions, indicating that this was not a mild attack of the virus. Kate and I both were truly impacted by what could have been and the grace of God which protected and healed and consider this a HUGE PRAISE. In further discussion with Kate's doctor she said regardless of the outcome of the audiogram, she would not consider the third dose of high dose chemo and stem cell rescue. In her opinion this would only once again compromise Kate's immune system and she would be highly suseptible to the BK virus again. Another round of the BK virus may not turn out so positively. The magnitude of information surrounding Kate's encounter with the BK virus was a lot for us to digest. Kate and I both agreed that without a doubt we had our miracle today in her healing and recovery from the BK virus without serious consequences.
~ I have observed over the past week or more that Kate's gait in walking is a bit off. Today it seemed particularly pronounced to me so I called it to the doctor's attention. She observed this as well as some other weakness in Kate's overall neuro exam. Her feeling is that this is just diffuse weakness - overall weakness from the wear and tear of the chemo and the virus on her body. Of course the other thought bringing fear into my heart is the chance that it could be tumor. Given the fact that Kate has just come through 2 courses of high dose chemo therapy and is not experiencing any pain, just weakness, we're going to believe that it is exactly what we are looking at - muscle weakness. We will however, schedule a follow-up MRI to see where were at sometime after she gets back from NYC.
REQUEST: Please ask that the MRI will remain clear and that the weakness have no other cause.

The audiogram brought disappointment and affirmation at the same time.
~We were disappointed but not surprised that the audiogram revealed further high frequency hearing loss in both ears. Over the past two weeks both Kate and I had observed that her hearing seemed to be impacted. The audiologist did not recommend any intervention at this time, but would like to evaluate Kate in another month to see where the hearing levels out to be. She said we could see a little more loss or a little improvement.
~While disappointed we also see this as an affirmation to support not doing the third high dose chemo and stem cell rescue. I had prayed that God would make it very clear what we should do and I believe the audiogram results were indeed that answer in that they only reinforced the conclusion of not doing another treatment that the BK virus led us to. One friend shared with me a couple days ago that hearing loss may be God showing us that a third treatment is not necessary and there is no need to go through another round of intensive, grueling treatment. Kate has expressed a feeling of relief in not having to face another treatment. While both the first and second treatment were tough, the second seemed particularly rough to her.
REQUESTS: Please pray that the hearing loss will stabilize in a positive direction.
~Please also ask that the three doctors involved in Kate's treatment will all reach the same conclusions about what direction to go from this point.

With the improvement of the BK virus symptoms we reduced Kate to 12 hours/day IV hydration rather than 24. We will do counts and another urinalysis on Wednesday. That way if anything needs tweaking we can take care of that on Thursday, as Kate is scheduled to leave on Friday morning for NYC. We are hoping that with continued improvement she will be able to go to NYC without dragging her IV back pack along.
REQUEST: Please ask that Kate will have health and strength to enjoy her trip to NYC to the fullest.

As I said the day was one of mixed emotions. I know I will wrestle with many thoughts and emotions in the coming days. I know, however, in the midst of the wrestling will come times of perfect peace. I cannot begin to understand the whys and why nots of what happens and does not happen as we battle this illness. I do know however that we have seen God's hand at work daily and that this journey has been filled with many miracles along the way. And so we choose to trust and believe as a friend put it so well today "that God will orchestrate everything according to His pleasure and purpose".

Only by grace,
Elaine