6 Months and Counting

It seems that time gets away from us. Quite ironic because the one thing I wish I had more of right now is time. This picture was taken exactly one year ago, and I can't even begin to imagine how things would have been different had we not been thrown this "curve ball" (as my brother says.) Sophie should be back at preschool...

On a day to day basis, it seems that Sophie's condition is unchanged. But then when I stop to think about how different she is from 2 months ago, it's obvious how the tumor is progressing.

I want to remain positive so posting these facts and symptoms is hard. Regardless of how she is digressing, we ask that you continue to pray for her in hopes that she will still receive her miracle. Fr. Beatty came last week and anointed Sophie again, and we had a mini first communion service. Unfortunately Sophie didn't take the communion, but we still have it here waiting for her to let us know she is ready.

I am still exploring other alternative options, but again, time is not on our side, and so far most of these other options have the same track record as the current conventional protocols that are available.

I have been trying to get Sophie to use a communication board to help me understand what she is trying to say. The social worker from hospice gave us some generic cards to use and then my sister Sarah and Andrea took pictures of things around the house. Sophie still continues to try to talk, and gets frustrated when I don't understand her. She has recently tried to use the pictures a little more.

Symptom wise Sophie is having a very difficult time chewing and swallowing. Her appetite has been better so it is hard to watch her struggle to eat. She's actually gone a few days here and there without vomiting but then the nauseousness comes back without warning. She has resorted to the use of pull-ups (although we still call them "sleeping underwear.") Yesterday I asked her if she can tell when she goes to the bathroom, and she said "Yes." I then asked her if it is too hard for her to sit on the potty and go and again she said , "Yes." Her balance and core strength have been affected and she dreads having to "stand" while getting her pants pulled up.

The hospice nurse came on Thursday and said that Sophie's lungs are still strong and her vitals are great. A positive thing to hear; we just need the rest of her to cooperate!

On Monday she finished her 18th treatment without the steroid . We are waiting for blood work to see if we can continue with 18 more treatments. We haven't really seen the kind of improvement that we have hoped for, but want to continue in hoping that maybe we will break through with these next 18.

I am thankful to God that Sophie has not been feeling any physical pain. I repeatedly ask her everyday if anything hurts, and she shakes her head "No." I'm sure it's hard for her emotionally though because her mind is perfect and trapped in a body that doesn't do what she wants it to do. From a mother's perspective, it is literally like watching your daughter be tortured; the only comfort that gets me through is that it doesn't appear that she sees it that way. It's hard to know what she really understands. I like to think that she is being comforted by Jesus each step of the way.

The last few days the weather has been beautiful and Sophie has agreed to go on walks, bike rides, and mini outings with Marc and this has been a blessing. It gives me a little break and I know the sunshine is good for her. I have a harder time convincing her to go outside...maybe because I haven't wanted to make her do anything she doesn't want to do. Although we actually did take a short trip to Bath and Body Works tonight to buy some antibacterial soap! How easy I forget.

Sophie has been so loving lately; she wants to hold my hand and be near me as much as she can. I tell her I love her and she squeezes my finger to let me know she loves me too. And even though her ability to smile is gone, every now and then I will see a twinkle in her eye and I'll know she is smiling.

Please, please continue to pray for her and for our family. We need God to bless us with a miracle, and we need it more now than ever. Thank you all for your continued love and support. With God, all things are possible.