Maintenance Overview

Now that we have completed the first month of Maintenance we're beginning to get a fuller picture of what we can expect throughout the rest of Anya's treatment. The Maintenance phase is the last phase of Anya's treatment prior to her being pronounced "medically cured". As with all of Anya's treatments up to this point the Maintenance phase can be prolonged by delays caused by sickness or low counts. Praise God that we made it through month number one with no such delays! The Maintenance phase consists of:
-An oral chemo pill taken seven days a week (a pill and a half on weekend nights) that must be taken without food being consumed two hours before or after the pill is taken.
-An additional oral chemo drug (six tiny pills) taken every Friday night.
-A clinic visit once a month to recieve two chemo drugs through Anya's port.
-Five consecutive days of oral steroid pills each month that begin the day we go to the clinic.
-A spinal tap every other visit to the clinic (once every two months).
For the most part this is very manageable, and is definitely less intense than the previous ten months of treatment. Anya has made yet another development in the past month in that she now takes her oral meds without complaint, whining or fussing. She has always taken the pills in a tiny bite of food and her current choice is to take the pills stuffed into an olive! She gets one "yucky" olive, followed by one "yummy" one. She is really a trooper and it has been good to see her get past the displeasure of taking the pills.
So, the hardest part of Maintenance is the five days on steroids. We started steroids Wednesday night, so tomorrow (Monday) morning will be our last dose. While I believe she has dealt with them better this time around than last month the effects are still obvious. Her appetite has steadily increased and she now wants multiple snacks between meals (craves the carbs, salt, and protein). This makes her daily chemo pill hard for her as she must go several hours without eating. We try to be done with dinner by 6:30pm and then give her the meds right at bedtime. She really struggled tonight, begging for food off and on between 7:30 and 8:30pm, but she made it till bedtime and is now asleep. She was up eating in the middle of the night last night and we expect that again tonight.
Her moods have also shown the effects of the steroid. She is very fussy and needy, irritable, and much more prone to conflict with the other two kids. Again, I've seen improvement in this area even from last month's steroid run, but it is still very difficult to see her suffering. When she's not on the steroids she is so compliant, rational, sweet, and content. Seeing her change into a different person is heartbreaking for me. Thankfully we took the 9th of 10 doses tonight and the effects of the steroids will gradually wear off in the days to come.
Anya is looking forward to performing a "special" in church on Saturday, May 17th. She plans to sing and dance, although she hasn't decided between "I love you Lord" and "I have decided to follow Jesus". It is exciting to look forward to that and know that she will be in the frame of mind to do it when the time comes. She was miserable and unpredictable enough this past Saturday that Anna kept the kids home and I attended church alone.
Again, let me take an opportunity to thank each of you for your love, prayers and support. We cannot imagine a more loving and compassionate response to our situation than the one we have recieved. We are blessed beyond description as God has shown His provision through the hearts and hands of those who love us. Thank you for everything. We will do our best to keep you updated, though we are often consumed by the task of re-assimilating to life here in KC. Until next time, Good Night.

Tuesday Visit

Israel took Anya yesterday to meet her new doctor and his team. Anya received intravenous chemo & a preventative antibiotic, as she will at the beginning of every month until Fall 2009.

Both agreed that her new doctor, Dr. Gamis, was fabulous and that Children's Mercy seems like a great place. We praise God for His mercy!

Tuesday

Anya's nurse called yesterday and said that someone would be calling today to get more information for their records. She has also scheduled an appointment for Anya on Tuesday afternoon. Anya is "scheduled" for chemo on Friday but they decided that the few days delay wouldn't hurt and since they have more time on Tuesday to meet with us, they'd rather have us come in then.

Doctor Appointment?

We called Anya's new doctor at Children's Mercy here in KC yesterday to schedule her next appointment. Unfortunately the pediatric hem-onc office hadn't received her medical records yet. The nurse here said she would try to work on things from her end.

According to this past 30 day cycle, it looks like Anya should be back in the clinic on Thursday for more intravenous chemo and perhaps for another spinal tap. I was happy to hear that they sedate kiddos for spinals here too. Praise the Lord!

Anya will also be starting another 5 days of steroids here shortly...bummer.

New Doctors

Tomorrow morning we will contact Anya's new doctors to schedule her next appointment. To be honest, I am at least a little anxious about this next step. We had all really come to love and trust her team at St. Vincent's Hospital and I can't imagine how any team could compare to the genuine care and concern the team there had for our little girl.

It may seem trite to be so concerned with such things but because a great deal of Anya's wellbeing rests on her comfort and security this is a really big deal to us. We pray that her new doctor would be as thorough, caring, and sensitive as her last and that his team would really embrace Anya as a little person with a unique personality and emotions, not just another patient. And we pray that Anya would feel comfortable with everyone and everywhere she encounters at her new treatment facilities.

We're Home

We're now home and working feverishly to reconnect with old friends and to get re-organized in our old house. Thank you, Dad, for driving our second vehicle to Kansas City for us and for all of your help with the kids these past few days. We are sure going to miss you!

And wow, what a whirlwind weekend we've had! On Wednesday, our eight hour trip turned into twelve and on Thursday we unpacked the vehicles and tried to get as much put away as possible before crashing. On Friday, Israel returned to work and on Saturday we attended services and ate a potluck with our church family. Today is another big work day - Israel is out mowing the backyard and I've been working steadily in the house. And there is still so much to be done!

Meanwhile, the kiddos are enjoying the nice weather today - playing outside with their chalk and running around the backyard. We are really hoping to get a swingset for them to play on in the near future if possible. Anya is still carrying extra weight from the steroids and we'd like to help her get back to herself without putting any pressure on her to exercise. A swingset would make things fun for her and our other two monkeys.

Returning to Kansas City

Today is the big day...we are leaving Toledo to return to Kansas City. The plan is to drive four hours to Indianapolis to stay the night at my grandparents' house and then to drive the remaining eight hours on Wednesday.

Anya is off steroids for the rest of this 30 day cycle...yeah! She is currently on an evening dose of oral chemotherapy and a second oral chemo drug on the weekends. She is feeling well, though still easily tired. We are thankful that she has been well enough to attend church, visit friends, and play with her cousins.