Home Again

I am happy to report that Nick is home tonight! After a long day at the hospital, Nick was cleared to go home. Nick was very happy to be coming home once again. Right now, the big picture is still fuzzy and no one is really sure what this new treatment plan will bring, but for now we are all happy to be away from Hopkins and the stress of being in the hospital.

Nick had a bone marrow biopsy today. This morning he got up and walked over to IPOP to find the nurse practitioner who took care of him when we were over there. Nick had hatched a plan the night before to go and ask Mindy if she would do his bone marrow biopsy as she had done it before and she does them all the time and she is very good at what she does. As luck would have it Mindy was there in IPOP and SHE AGREED TO DO THE MARROW BIOPSY! Yeah! When you are having a barbaric test like this done to your body you only want the best. Nick did the best ever with this test. He got the medicine they can give, but, this only really takes the edge off, it does not knock you out or take away the horrible feeling of the "pull." This is when they suck the marrow out of your hip bone and it is reported as an awful, eerie and painful thing, that only those who have been through it understand.

After the bone marrow was over, Dr. Rangy showed up to perform another lumbar puncture and give Nick his dose of IT chemo. Earlier he had been in the room and was talking to us about having something called an Ommaya reservoir placed in Nick's head!!!! This is another barbaric device that is implanted into the ventricles of your head and there is an access port that is completely under the skin of your scalp. This "reservoir" is used to draw out samples of CSF and then give the chemo into the access port. The chemo then runs through the implanted reservoir and into the ventricle in your brain and into your spinal fluid. While this procedure eliminates the need for multiple LP's, it involves a surgery and a neurosurgeon to place it in your head. There are many RISKS to having one of these and the main one is INFECTION. Every time this port is accessed there is a chance of introducing bacteria directly into Nick's head, CSF, ventricles. Dr. SW had mentioned this a few days earlier as a "down the road" possibility, in case Nick was getting tired of the LP's or still needed frequent LP's. I was quite shocked by this coming up today, especially with Nick having all these other tests on his plate. I am not sure if he expected us to say "yes" right then and there or what? Needless to say, Nick has more than a few concerns about this and so this idea was tabled for future consideration.

After Nick's LP was over we started to pack up and got ready to get outta there. Nick & I stopped for some food on the way home and Nick spent a few hours snuggled up on the couch with family before hitting the hay. I think he is still very tired and needs to recover from this long week. Nick was in hospital for ten days! Nick seems to be tolerating the chemo better this time. Perhaps it was the methotrexate that caused the issues last time. The medicine Nick is getting is called Ara-C or Cytarabine. He is also on Decadron, which is a steroid, to try to minimize any irritation to the the brain tissue by the chemo, which can cause the headaches.

We now must wait for the results of the bone marrow and the LP to come back. We are also still waiting to hear the results of the MRI. I ran into Dr. SW by the elevator on my way to the car with a load of stuff. He has been really wonderful (for the most part) and at least a daily presence in the oversight of Nick's care. He complimented me on the job I am doing in trying to keep Nick's care coordinated and all the different arms and heads of the beast working towards the same goal. I think Dr. SW was trying to tell me to keep up what I am doing as it is very necessary. He feels the system at Hopkins is like all things, there is good and bad to their way of doing things. Also, with all these new twists and turns, Nicks is no longer on a specific protocol and there will be many opinions of what we should do and no one know can say for sure what is the exact right formula that will bring Nick's leukemia to it's knees. Dr. SW said, "it is like a ship floating in the ocean." I said, "yes...a ship without an anchor." He said, "no, a ship without a captain." I said to myself...."wow, that's more than a little scary to know!" Guess we will have to captain our own ship to find our way back to safe waters.

"Also, just for the record... Sara Caitlin is my favorite child because she is intelligent, funny, and of course drop dead gorgeous." This is Sara's addition to my post. My sweet girl who has been struggling her way through this just like all of us. Each of us trying to find our way through the emotions that run the gamut from sadness and sorrow to laughter and love. Sara even picked my picture for tonight's post. She doesn't read my blog so if you talk to her, please let her know how proud I am of her and how much I lover her! The journey is far from over and we will all need the strength and support of our friends and family to get through. Please keep Nick in your prayers. While he may be home and feeling better, he is still fighting an opponent who plays dirty and knows no boundaries. As one of the doctors said today, "leukemia does whatever it wants to do and we have no control over it." Truer words were never spoken.