Feeling hopeful ... again

It doesn't take much for our hopes to rise again.

Even though we felt incredibly alone spiritually last week, we know that God was with us.  He has given us all of our emotions, including anger, and I know that whatever sins we have committed during this journey (of which I am sure there are many), He will forgive us and will always welcome us back when we stray.

It's hard to imagine Jesus experiencing the kinds of struggles and pain that we have gone through in the last two and a half months, but during Holy Week, I am reminded that Jesus went through much worse.  Not only did He go through physical and emotional pain during His time here on earth, but his friends deserted him, and worse than that, His Father even turned His back on Him.  Our friends have never deserted us and, though it may feel like it at times, God has never left us.

Here is why we have hope again for Anna.

One of her antibioitcs, vancomyecin, has been stopped because one of the infections has been clear for 10 days.  She is still on two other antibioitics, but the plan is for those to be stopped on Monday assuming her cultures and tests continue to show no bacteria.

She is done with her radiation, and has been for 7 days.  Her radiation effects are peaking this week while she is sleeping a lot of the time.  On a side note, Anna has received all of the radiation therapy that her body will ever be allowed to receive.  If any cancer recurs, she cannot have radiation.  So she never has to go through that again.

Anna is back on her feeds and officially off of TPN again.  We had the discussion this morning about how we can adjust her feeding schedule to make it more comfortable for us when Anna goes home (meaning no nighttime feeds).

But best of all, this morning when I got to the hospital (neither of us slept here last night), Anna was awake and alert.  She and I had a somewhat real conversation, which we hadn't done since last Friday.  I told Anna about a meeting Matt and I had yesterday with her first grade teacher and principal.  When I asked her if she remembered her principal's name, she recalled it correctly on her own!  And, after a nice morning nap, Anna smiled at a joke while some doctors were in the room; we haven't seen her smile in at least two weeks!  So ... her state of concsiousness is continuing to improve :)

One more hopeful idea, and this one definitely falls under the category of "shoot for the moon".  The reason Anna needed a brain shunt in the first place was because of the cancer.  Now that the cancer has somewhat receded, there is a very, very small possibility that she will no longer need a shunt.  We have been told that once the circulation system inside one's central nervous system is damaged, there is little hope for it to recover.  However, with all of the other crap that has happened in Anna's brain recently, enough other things could have been fiddled with for things to self-correct.  So ... Anna's system will be "challenged" by having the drain clamped to see if she can handle the fluid on her own.  No brain shunt would mean no risk of a future infection from the shunt.  We realize that the chances of not having a shunt are really small, but we can still hope.

So ... we are again hopeful.  I think I am in a better place today, too, because Matt and I were able to spend the most time together outside of the hospital yesterday than we have been able to do in probably three weeks.  We miss each other :(  Life is a whole lot more manageable together than it is apart.

One other part of life that I realized I have been missing is the give-and-take nature of relationships, and even conversations.  Normally, we don't think of ourselves as strictly "takers", but in the last few months, we have been "taking" a lot.  It is a humbling experience.  I miss being able to give back.

We have tried hard to at least maintain a bit of give-and-take in terms of our conversations and interactions with others.  I like to ask the nurses, therapists, etc., about their lives and families, and when we are out and about, I try to ask others about the rest of their lives, too.  We find that it is easier to take the focus off of ourselves and our current struggles; it helps us remember that the rest of the world is continuing to function, regardless of Anna's diagnosis.  So don't be surprised if we ask you about your life the next time we see you :)

Time for prayers

Thanksgiving
Please give thanks that Anna's PRES is continuing to resolve itself.
Please thank God that Anna is able to tolerate her feeds again.
Please give thanks that Anna's infections are clearing up.
Please thank God for the opportunity for Matt and I to see each other yesterday.
Please continue to give thanks for the amazing care Anna is receiving.
Please thank God that He did not desert us in our hour of need.
Please continue to give thanks that our friends have not deserted us.
Please thank God that Anna can sleep.

Requests
Please continue to pray that Anna's treatments are 100% effective.
Please continue to pray for Anna's care staff at the hospital.
Please ask God to heal Anna's body, from cancer, radiation, chemotherapy, infection, surgery, and PRES ... whew!
Please continue to pray for peace, strength, wisdom, and hope for our family.

Thank you, especially, for putting up with my sadness and tirades of the last few weeks :)

On a final side note, I just met another doctor, a different nephrologist (kidney specialist) than the one we have spoken with recently.  She was trying to figure out why Anna's blood pressures were so high and how she ended up with PRES.  After answering some of her questions about Anna's history and explaining my theory about the events leading up to PRES, she agreed with its logic.  I guess I'm doing an okay job of being the general contractor, even if most of it is in hindsight.