Thursday, December 21, 2006

And the glory of the lord

Leave it to Amy. The other day, she fretted that this was the first year she didn't send Christmas cards. Woman, we all understand.

But in the spirit of the season, we've found a way. While Blogger may attempt to shrink this down a bit, if you click on the card to your left, it should open in a readable format.

Christmas is about miracles, joy, family, and love. I have no doubt that on Monday morning, when they tumble from their beds to see what Santa has left under the tree, Sahara, Amy, and Shannon will feel very blessed indeed.

A week ago I wouldn't have known the difference between a hemostat and hemoglobin. But I do now. I have to use two hemostats when preparing Sahara's IV bags, clamping and unclamping the ports as I do the work. As I suspected, I have absolutely NO strength in my hands, particularly the left. Each bag has to have all of the air bubbles removed before attaching them to the pump. It's a three-step process and takes about 45 minutes (I'm told that I will get faster as I get used to dealing with this). I know that I'm improving my time each day, but WOW, are my hands sore!!! All this and a workout, too. LOL.

I've been in class nonstop since Monday, and I think my mind is officially full. When I first opened the binder of training information last week, I thought there would be no way I'd be able to do this. I think it's one of those situations in which if they told you beforehand all you will be required to do on this treatment, you'd be too scared to commit yourself to it. Especially the chapter about drawing blood...shudder. I do not "do" blood. Ever. Yuck.

I found out today, much to my amazement, that drawing blood out of her catheter is the EASIEST thing I have to do! I was fine with it, and Sahara said I did a good job (her opinion really matters the most). I probably won't have to do this all the time, but they require you to know how to do it.

This medicine gets increased each day, according to the tolerance of the patient. The doc told us yesterday that Sahara is taking higher doses (without any side effects) and at a more rapid rate than any child they have ever treated at the clinic. (She always has to be the one to stand out in a crowd. LOL.) This, plus the fact that I'm apparently a good student and have caught on quickly adds up to something really great:

We will be home before Christmas!!!!!!!!

We are cutting off a full week of training and adjustment time. I can't believe it!!! We had totally prepared ourselves for three weeks, including stocking the pantry and fridge and putting up a Christmas tree! (Special thanks to those of you who have sent presents! Now HOW am I going to get all of this stuff in my car??? LOL!) We will have to pack it all up and somehow stuff it in the car, along with two weeks' worth of supplies, which includes FIFTY IV bags, thirty of which are 1000 ml, twenty which are 250 ml, and all the fun stuff that goes along with doing the treatment. I told Sahara she'll probably be sleeping on top of suitcases on the way home. LOL.

The days have been long, and sometimes very tiring, and it's been intense at times. But Sahara's doing SO well, and I feel great about what we are doing. We've met some amazing people at the clinic, from the wonderful staff to the brave patients. Today we met a couple from LA who have gone to four different countries in search of help for the man's tumor, to no avail. They recently arrived at Dr. B's, and are, like myself, very pleased and upbeat about the treatment. The waiting room always has people from all walks of life, each of whom are fighting their own personal battle with cancer. Here's a definition of the cruelty of a brain tumor: a man from California has the same type of tumor as Sahara, but his is growing forward, toward his optic nerves (this is the typical pattern; Sahara's, however, has grown backward). He is/was a photographer...but now he has double vision so bad that he can no longer do the work he loves, and he is fighting for his life. It seems especially wrong.

This treatment is not easy. It requires a lot more time and care than I anticipated, and it's going to take a lot of getting used to. It is inconvenient, cumbersome and a general pain, but, on the other hand, it is non-toxic, has only minimal side effects, and works really well on brain tumors. It's a pretty sweet deal, if you ask me.

Two more days to go! Shannon's coming down Friday and we will make the trip home over the weekend. Being at home for Christmas, and having Sahara with us - that's the best present of all. :)