Update from Keith: April 28th, 2008

Friday was Taylor's regularly scheduled day for chemo. Chemo days are always a little uncertain. We never know if there will be a hospital bed for her or not. Thus, Kris has to call early in the morning (about 8 am) to let them know that we are coming in for chemo and need a bed. Then, Kris has to keep calling every few hours or so until they tell us there is a bed available.

On Friday, we learned that Taylor could come down at about 1. Once we got there, we had to stay in the waiting area as the promised room was not available. Taylor wanted to go to the playroom, so we went up there when it opened at about 2. After half an hour in there she was zapped, so we walked down the hall and found that a bed was finally available. It worked out perfectly and Taylor got some rest.

After obtaining a bed, the next order of business is getting hydrated. To do this, they have to access T's port which means sticking a needle in her chest. Not surprisingly she hates that part, although she usually reports that the pain was less than anticipated (of course, she forgets this by the time the next one comes around). Poor T gets very nervous about this and is nauseated leading up to the actual event. She always holds one of our hands and squeezes very hard when they prick her. On Friday, things went smoothly and T told us that it didn't hurt too bad. She is always quite relieved once it is over.

After hours of hydration, they finally gave her the chemo around Midnight on Friday night/Saturday morning. Delivery of chemotherapy requires significant preparation in terms of dosing Taylor with medications to try and limit chemotherapy's side effects. Thus, in addition to her usual regimen of medicines (oxycodone, remeron, mucinex, fluconazole, and Bactrim (only on weekends)), she receives Zofran (an anti-nausea drug that is often part of her regular regimen, especially after chemo), and Ativan (an anti-anxiety drug that has anti-nausea effects on chemo patients). She had first received Ativan the time before and it worked very well. She did not throw up at the hospital at all the time before. Of course, once we got home and had no Ativan she threw up copiously. Thus, we secured a scrip for Ativan so we could adminster it at home this time.

(As an aside, if this list of medications seems long, it is not half of the medications that she received during her last extended stay in the hospital).

The chemo itself is fairly quick; it consists of three drugs (poisons literally as they are designed to kill cells). Two of them are just "pushes" (i.e. the nurse loads it in a syringe and just pushes the contents of the syringe into T's port). The third has to be pumped into her body over an hour or so.

On Friday, administering the chemo went just fine. In fact, Taylor was wired. The Ativan might have been part of the reason why, but it also turns out that Mom let T sleep in until 11:30 on Friday morning, so that she wanted to stay up watching movies with Dad all Friday night. As such, we stayed up until 2:45 watching Annie, the Adventures of Sharkboy and Lavagirl and other such fare. T finally went to sleep then.

When Taylor gets chemo, it is imperative that she urinate every two hours for the first 12 hours following the therapy. One of the chemo drugs can have a particularly harsh effect on the bladder, so she needs to eliminate her urine frequently to keep it out of her bladder. They keep her well hydrated to assist with this as well as to keep the concentration of the drug in her bladder as small as possible.

The effect of this is that we have to awaken her every 2 hours to go to the potty. I woke her at 4:15 the first time. She was quite groggy. The nausea also caught up with her and she threw up. This was unfortunate because they won't release kids to go home who are still suffering from bad nausea. The previous chemo trip she was able to avoid this so we went home after less than 24 hours. I woke her again at 6:15 and then 8:15. Each time she went to the potty, but also threw up. By the time 10 am rolled around she had thrown up 4 times already (there was very little for her to throw up as we had not fed her for a day or so, knowing that chemo would make food impossible).

I went home to sleep at 9:30 on Saturday morning as the hour and a half between 2:45 and 4:15 and the almost 2 hours between 4:30 and 6:10 represented my only sleep the night before. During the day, Taylor remained nauseated and they added Benadryl and Reglan to her anti-nausea medications. Although the doctor pretty much left it up to us as to whether to go home on Saturday, we consulted Taylor and her nurses and determined that it was best she stay at the hospital on Saturday night. Taylor requested that her Nana spend the night with her and the two of them had fun.

By Sunday morning, Taylor had stopped throwing up and was stable. Everytime she has chemo, her face gets swollen. She had her normal Chemo "puffy-face" on Sunday. Everything looked fine and we were able to bring her home by noon on Sunday.

Since coming home, Taylor has been in good spirits although she is tired out from her chemo regimen. As always, we will cross our fingers and hope she does not develop a fever in the next few weeks so that we can avoid going to the hospital.

Being back in the hospital over the weekend was bittersweet. It is nice to see many of the nurses with whom we are friendly and the staff at the playroom. Kris is friends with some of the other cancer moms and they got back together and traded stories. The sad news is that apparently 3 children died on the floor last week (one of the deaths, we are told, was not from cancer itself but from developing an infection while neutropenic which is why we must go to the hospital whenever Taylor develops a fever following chemo). It was an all-too sobering reminder of what is at stake.