One more round

Anna has officially had five rounds of chemotherapy and has only one more scheduled before her treatment is considered complete.  She still needs to make it through the low counts time of round five before we think of her as safely "through" the round, but at least the end of this phase is in sight.  The chemo visits, overnight hydration, doctor's appointments, and coordination of childcare is all a bit more complex now that school is in session.

As we come to the end of treatment, we are filled with plenty of emotions, again.  We're definitely thankful that the chapter of Anna's life which requires chemo will be passed.  It's going to be a lot easier on all of us not to have to deal with the separation, uncertainty, and anxiety that comes with the kind of chemo that Anna has received.  However, the combination of radiation and then follow-up chemotherapy was the big push to eliminate Anna's disease.  We understood at the beginning that not many options exist for treatment beyond what Anna has already had.

So, once the next round is over and done with, we begin the long process of "wait and see".  To be honest, we will never be able to fully relax and assume that Anna is cancer free.  With the kinds of treatments she has had, the potential exists for her to develop a secondary cancer (cancer caused by the radiation or chemo drugs) or for her to have issues with different organs (heart, kidneys, etc.).

All along we have been hoping for the best, that Anna would make it through treatment, that the treatments would be 100% effective, that she would have few, if any, of these long term side effects, and that she would regain most, if not all, of her strength and mobility.  But we are also aware that what is considered the best by the world's standards may not happen.  However, if the cancer wins here on earth, then Anna wins ultimately because she will be the first in our immediate family to be with Jesus.  No more cancer, no more pain, just lots of amazing love and plenty of family waiting for her.

Last week and this week are full of trips to the medical community.  Anna's ophthalmology appointment last Monday showed that her double vision is pretty close to what it was back in the summer, only a slight improvement.  The doctor said that her habit of pulling her headscarf over one eye to facilitate the ease of her distance vision is a perfectly acceptable way to compensate, as long as she doesn't do it all the time. Her double vision at close range is more likely related to eye fatigue; it's just hard for her to make those eye muscles work hard when she's also using her brain to do whatever up-close work she is currently doing (reading, math, coloring, etc.)

The good news about this appointment is that her eyes show no sign of increased intracranial pressure!  Did you know that the back of your eye, I think where the optic nerve attaches to the retina, is extremely sensitive to higher ICPs?  Just another piece of information we have learned.  This means that Anna is still clear in terms of not needing a VP shunt.  Whew!

Wednesday and Thursday last week were the chemotherapy days.  Wednesday was a long day for us, but Thursday brought many hospital personnel to check-in with Anna.  So far so good, according to the rehab team, endocrinology team, nutritionist, nurses, nurse practitioners, doctors, hospital teacher, etc.  One of my favorites is when Anna would say "Excuse me" after I have been discussing with a health care professional for more than five minutes.  Then she would ask, "Can I have my mom back?"  :)

Friday morning Anna had an evaluation for a comprehensive rehab feeding and swallowing program.  We're waiting to hear what they thought and what kind of plan we may be able to put in place.  I think we are all ready to start moving forward in regards to Anna eating orally.

Monday Anna had a follow-up echocardiogram and appointment with the cardiologist.  According to the doctor, he is very pleased with how her heart is functioning.  I think his exact terminology was "We're going to brag about you and your heart's recovery."  So that's good.  She will need to continue on her cardio medications for awhile yet, though, because that is considered standard practice.

Unfortunately, however, today was a day with too much vomit for sweet Anna.  She has a bit of a cold again so the nasal drainage and coughing messes with her gag reflex.  After this early morning's episode, she was cheerful and had a great morning back at school.  But then she was coughing and gaggy after her nap on the way to the hospital.  Car vomit is one of my least favorite things to clean up.  This evening she had another episode :(  No wonder our poor child has some anxiety about eating again.

After a chat with the hem/onc doctor on call, we feel more comfortable about giving her a decent night's rest with her overnight hydration, and wait until the morning to go back to the hospital for her regularly scheduled clinic visit.  Her blood counts shouldn't have dropped too much yet so most likely she is just fighting the virus that already went through Kate and Ethan.  Still, I think I'll consider it a miracle if she makes it through her remaining chemo treatments without another fever.

Kate made it through last week and weekend just fine.  She loves playing at her friends' house after school when we need the added childcare and wishes she could have a sleepover ... we tell her not yet.  Over the weekend she has some quality mommy-Kate, daddy-Kate, Kate-and-Ethan, and Kate-and-Anna time.  She's a pretty special kid.

Ethan is awesome.  Not only did he come along last Monday for my meeting with the feeding people, but he also went with us for the hour and a half ophthalmology appointment as well as Anna's hour and a half evaluation on Friday morning.  Since he was already scheduled to be with our friends all day on Wednesday and Thursday, I opted to bring him along the other days.  For each of these doctor's appointments, I pack up some food, a couple of cars, and some books; then this toddler is quite content.  He gets a little squirrelly towards the end, but has otherwise learned to adapt to all kinds of situations.  One of these days I'll need to make a list of his silliness again.

Time for prayers

Thanksgiving
Please give thanks that we are starting to move forward in terms of Anna's oral feeding.
Please thank God that Anna's heart muscle and function has made a great recovery.
Please give thanks that our family made it through the craziness of last week.
Please thank God for the supportive educational community that is working with Anna as well as they can be.
Please give thanks for the relatively peaceful weekend that we had as a family.
Please thank God for all those who are working with our family.

Requests
Please ask God to be with our family as Anna goes through her low blood counts time.
Please pray that Anna's cold and vomiting is nothing serious.
Please continue to pray for all those who are working with Anna and our family.
Please continue to pray that Anna's treatments are 100% effective.
Please pray for Matt's mom, who injured her leg over the weekend.  Although nothing appears to be broken, it's quite painful.
Please pray for my brother and his girlfriend as they travel to Wisconsin this week to visit my parents.
Please continue to pray for peace, patience, rest, strength, wisdom, etc. for Matt and I; we're both running a little empty right now from lack of sleep.

Thanks for your continued prayers and support.