Karly's lumbar puncture on Monday went well. We just received word yesterday that the spinal fluid they tested on Monday is clear of lymphoma. Praise God! She was scheduled for a blood patch to repair the spinal leak on Tuesday, but she had a fever, and it was canceled. Her fever cleared long enough for the surgeon to put in the Ommaya Reservoir on Wednesday. She woke up with an immense amount of head pain. Her head still throbs and aches even today, but most likely from the spinal leak. She had her first chemo through the brain port on Thursday. She didn't feel anything and much preferred this method over the spinal tap. The blood patch was rescheduled for this morning, but she had a fever last night, and it was canceled again. Her second cycle of systemic chemo was started today. For the next 5 days, it runs non-stop. I still pray for the leak to repair itself over the weekend. If on Monday, she still cannot sit up, then we will try to schedule the patch again. They usually don't do much when on chemo because her cells deplete, and she becomes very susceptible to infection. Karly had one of her better days on Tuesday where she sat up for several hours, took a shower, and we wheeled her over to the Children's Inn to shop for her brothers and sisters. She enjoyed the brisk air and getting out, but we wore her out. So much for washing her hair because after the surgery on Wed. they had her hair all mucked up with bacitracin. She is quite the grease ball and cannot get her hair washed for about 1 week. Her hair is falling out, so one of our priorities is getting to the wig store. Until then, we got some cute, tight fitting hats. She is still sleeping today which is for the best. Pam left this morning for Manhattan to visit her sister. My sister Deb drove up for the day bearing good gifts....fuzzy lounge pants, hat and scarf set, fuzzy soft footies, and fruit roll-ups, gushers, and homemade turkey & noodles, and taco meat for nachos later. We have done a good job of stuffing her with food. The scale said she had gained 3 pounds today. Way to go mom, Pam, and Debbie! Pam spoiled me with company, food, distractions, and outings. She especially spoiled Karly with back, arm, foot and head massages, Chinese food, laughter, and on the last day she really went above and beyond and spent 5 hours on a mission. Karly had a very bad day on Wednesday after the surgery. She was emotionally spent. I had to remind her of all the happy thoughts stored away for times like these...like her family, her hamster, her friends, Zach, volleyball, dance, and the cruise. This really helped her, so I had some help at home to get ahold of her photos which were on my computer. This turned out be quite an ordeal. The computer at the hospital and Children's Inn are blocked from many things including using flash drives. Pam had to get an IT guy to allow access to download the photos onto the flash drive. She went to Target, got all the photos, bought a photo album including stickers, returned with hours of fun for the future, and all the happy photos. She went through them last night. It made her so happy.
Kelsey's week hasn't gone very well. She returned home on Saturday, Dec. 5 with much delay from the weather. After she left the hospital, we found out that her liver counts were very high. She had to get her blood drawn at home on Monday, Tuesday, and Friday. Since her counts were on a downward trend, they allowed her to take the study drug on Wednesday. They will continue to monitor this closely. Because they had to take her off all pain medications, she is really struggling with pain. She flys out here on Tuesday and returns on Wednesday if all goes well. I plan on talking with the stem cell transplant doctor in a couple of weeks. Another piece of good news we found out this week is that the 2 people in Germany that were suspected of having Dock 8, in fact do have it. That's not the good news though. Both individuals were tranplanted, one 4 years ago, the other 1 1/2 years ago, AND both are doing fabulously.
I must go help her so more later. There have been many blessings, and things to be thankful for, and more of God being God in the midst of this struggle.
Love to all,