Home from Tulsa

Where and how to begin, I really don't know, but now that it's been 2 days since Emily asked me to do this for her, I can see just how difficult it is to find time to update, and my time is not nearly as consumed as hers is. Anyway, now that all the kids are in bed...at least for the time being, I am going to try and get a quick update posted, as I know many of you want to know how Sophie is doing.

As I write this, we (Marc, Emily, Sophie, Sarah, my parents, Zach and I) are all home at Emily and Marc's in Avon Lake. Sophie did complete 10 treatments in Tulsa, but then had a bad couple of days, taking a turn for the worse. It started with what Emily and Marc thought were some respiratory problems on Sunday, August 5th, as Sophie stopped breathing for about 30 secs after having a small meltdown. This was after some of her symptoms had started to worsen slightly (the drooling, the weakness, her speech) so Marc and Emily decided it would be best to be home. But then she bounced back a bit later that day, and Marc and Emily decided that Emily and Sophie would stay through the week for some more treatments. By this time my mom was out in Tulsa with Emily so Marc could go home to work. He took baby Sarah back to MI with him on Monday so she could stay with my dad instead of in Tulsa. Sophie did see a doctor in Tulsa that Monday, after the breathing episode the day prior, who told Emily that Sophie's lungs sounded clear. There was some possible issues with her port too, so after a day running around from hospital to hospital, an x-ray confirmed that everything was okay. After another day of treatments in Tulsa, Sophie started vomiting uncontrollably in the middle of the night, not even being able to keep water down. Again, another scary night and day for Emily and my mom, so they did one last treatment in Tulsa and headed home. That was on August 7th.

The first few days at home were rough for Sophie...still lots of vomiting, lots of sleeping, and worsening of the drooling, her speech, and her weakness, to the point where she is not walking at all. She still wasn't able to keep much of anything down and Emily was nervous about her hydration. The hospice nurses had come too, and said that as long as she is still urinating, she would be okay and that the decreased food intake wasn't really an issue just yet. They brought the oxygen and suction to the house, just in case. They also listened to her lungs and heart and said everything sounded good. Sophie has continued to do her treatments at home as her port is still accessed. She is over the half-way point with the treatments, during which time Emily has also continued to decrease the steroid. They were told in Tulsa that the steroid prevents the body from responding (to anything) like it normally would, so there was a chance that it would be working against the treatment. So, now she is on 0.5 mg, which is down from the 1.75 mg that she was on when they first went to Tulsa.

So, from day to day since then it has been up and down. Sophie spends much of the day in bed, restlessly sleeping. She continues to vomit daily, sometimes several times a day and night. Her speech is very difficult to understand, she is not walking or standing at all and is quite unsteady even when sitting. Her left hand, which has been the good hand, is also a bit shaky. She is showing some difficulty chewing and swallowing and at times her throat sounds rattly. It's so hard to say what is going on in her body, but she has shown some of the symptoms that many of the other cancer patients have experienced as their tumors lysed and were being killed off by this alternative treatment. Due to that, she has taken a day off here and there to allow her body to detox. Having been here for about a week now to help out, I can certainly say that some days are better than others. Some days when she does the treatment, she is vomiting non-stop and in bed all day, and some days are not so bad, with no vomiting at all. Mostly she just wants to stay in bed, but has had a few good days playing with my parents, Marc's parents, Emily's friends, Jen and Andrea, and even baby Sarah. Aside from her speech and sleeping at night getting progressively worse, her symptoms have been about the same for the last week or so. She is not eating nearly the amount of food she had been before, but has been able to keep small amounts of food down here and there.

At this point, the plan is to finish out the 36 treatments here at home and then go from there. Just today the hospice nurse came for a check-up and said Sophie's lungs still sound great, as does her heart, and her temp was just fine. We continue to hope and pray that this will be the answer to all of our and your prayers for Sophie. Please continue to pray for her, as well as Emily and Marc. Today was a bit of a tough day for Emily, as Sophie wanted only her. Up until today, Emily and Marc have been able to trade nights sleeping with Sophie and even myself, my mom, and my dad were able to do things for Sophie during the day, like potty breaks, and lying down for naps, but today she wanted nothing to do with anybody. Nights are really rough and are probably the hardest for Emily and Marc as she is very restless and just doesn't sleep. After a full day of tending to Sophie, a night without any quality sleep wears greatly. I can't even begin to imagine what is going through Sophie's head right now and I can't even imagine being in my sister's shoes. Days like today really wear on Emily, and her patience, courage, and strength are tested to the max. As always Emily and Marc are doing an amazing job with the hand they have been given, but they could never do it alone, so please keep sending your positive thoughts our way and keep the prayers coming.

Sarah

P.S. Just another note to add, now that I am getting back to this post and yet another day has gone by. Today Sophie had a better day and left the house twice and sat outside on the back porch for a bit. She had a "morning with Daddy" as she and Marc went to First Watch for breakfast and to the book store for a couple of new books. She's usually not too excited about going out but agreed to the trip if Marc carried her everywhere instead of using the wheelchair. Then she, Emily, and my parents went to Malley's this evening to bring back surprise ice cream treats for everybody. That has been a routine occurrence over the last week or so and Sophie sure gets a kick out of passing out the surprise treats when they get home!! It's great to see her enjoy parts of the day, since so much of the last few weeks have really been tough on her. Although it's getting more and more difficult to understand what she's saying, she still doesn't miss a beat and surprises us with the cute things she says from time to time. Today I was rubbing her feet and legs (her favorite thing for me to do) while Emily took a shower, and Zach started fussing in the other room. I wasn't sure if Sophie heard him, but usually it means I have to go see if it's time for him to eat or what he needs. This time I kind of ignored it for a second so I didn't have to leave and stop rubbing Sophie's legs, and Sophie said to me, without even opening her eyes, "don't worry, he'll probably calm down soon." I just smiled and again said a small prayer that there will be many, many, many more "cute Sophie things" for me to hear!!