Wednesday, December 26, 2007

They don't call it "intense" for nothing

On Friday, December 21st Anya visited the clinic to confirm that her counts were high enough to proceed with the next stage of the current phase of treatment. The current 6-9 month phase she is in is called Consolidation and this new stage of it is called "Delayed Intensification".
We started Delayed Intensification on Monday, December 24th, with a trip to the hospital where Anya underwent another Lumbar Puncture (Spinal Tap), the procedure where she is placed under conscious sedation and they draw out a sample of spinal fluid (for testing) and inject chemo directly into her spine. The procedure was uneventful and Anya and I (Israel) were able to return home that afternoon.
While at the hospital Anya also recieved a dose of steroids. In addition to numerous clinic trips for chemo the Delayed Intensification stage (which is scheduled to last 21 days) has a daily regimin of steroids that we give Anya here at home. If you recall Anya took steroids early on in her treatment and they wreaked havoc on her. The steroids are both mood and appetite altering. We have seen both effects here in the first 48 hours since she recieved her first dose (she takes a dose morning and evening). Early on in the treatment Anya's doctors explained possible side effects in very factual, clinical terms. Now that we have built a friendship and great deal of familiarity with them they often accompany the technical descriptions with more direct, unguarded explanations. On Monday when Anya's doctor was consulting with me about what to expect during this stage she said, "In the next 24-48 hours [after starting the steroids] Anya will be pretty crazy. They don't call Delayed Intensification 'intense' for nothing."
Anya has been fussier, more sensitive to pain or disomfort, has outbursts of tears and frustration, is especially needy for attention (needs "company" when she's using the potty), and despises taking her medication. Last night her dosage (several tiny pills crushed up in a few tablespoons of pudding) took over 30 minutes to consume with her crying, pleading, and fighting Anna off. I just lay in the other room holding Esther, crying and praying. It made me wonder how we endured the first eight weeks where that kind of suffering in Anya seemed constant. She is such a brave girl. After she had finished taking her medicine I came out of the room and sat next to her and Anna and cried with her . At one point she said, "I just want to be done with luekemia." Of course this only made me cry harder and then out of nowhere she began tickling my chin and trying to make me laugh. That leads me to the good news.
The first time Anya took steroids she had just recently been diagnosed. Interaction with medical personnel was terrifying to her, she was in pain most of the time, confused, scared, frustrated, and trying to adjust to a life away from home that was seemingly different in every way. The steroids only compounded everything she was feeling and she was genuinely miserable most of the day with short breaks where she would be quiet and melancholy. Thus far the effects of the steroids have come in relatively small doses, with her being her usual cheerful and helpful self throughout the majority of the day. For instance, this morning she went to the sink after breakfast and "washed" dishes for about thirty minutes. Then she felt tired and lay down for a while to rest. Also, her appetite for food, which was insatiable the first time around, has only been slightly greater thus far since she started the steroids.
We are hopeful and prayerful that the effects of the steroids will remain minimal throughout the next three weeks. The doctors have repeatedly warned us that this three week stretch is often the most difficult stage of the entire 5 years of treatment. However, Anya has marched to the beat of her own drummer for most of the treatment thus far and we are hopeful that the same will be true of this stage. She has only had one delay in her treatment from sickness, something that most children her age fight with constantly. Twice she has had a fever that caused us to go to the emergency room but then disappeared within 24 hours, keeping her treatment from being delayed. She has experienced relatively few delays in her treatment as a result of her counts not recovering quickly enough and she has enjoyed good health outside of the leukemia (meanwhile everyone else in the house has fought with allergy, sinus, and seasonal cold issues!). Also, Anya has experienced relatively few side effects from the drugs and consistently amazes the doctors with her energy and cheerfulness levels. We attribute all of these things to God's miracle working power and the courage He has given Anya. We believe that He can see us through this "intense" stage with minimal problems. At the same time we covet your prayers as even the "minimal" effects are nearly devastating for us. It is so difficult to watch Anya suffer and it is exhausting to care for her and the other children while she's struggling. We are so thankful for Anna's family who continue to be a constant source of support as we live with her parents and cannot express our gratitude to those who have sent countless gifts and cards that give encouragment and joy to all three of the kids. We will keep you updated as we are able. Thank you for your prayers!