Well, in keeping consistent with most things in our life, today was much longer than anticipated. We did, however, get a lot of information.
Our first appointment was with the dietitian. She was very informative. We learned that Alex would get a special menu as soon as she is admitted. It's called a microbial diet. The hospital kitchen is trained in preparing special meals for the bone marrow kids. We learned that the kitchen will also buy any special items that Alex might want that are not on the menu but are allowed. Like individual Lynn Wilson burritos. They don't stock them... but if we give them a list of things that Alex wants, that they don't have, they will send someone out to buy them and keep them stocked. They would rather have the kitchen do this than me. They want to be sure that it's stored right and prepared right. I think this is a fabulous idea! Unfortunately it sounds like Alex will be on TPN (Total Parenteral Nutrition) for a lot of her stay in the hospital.
The next appointment was with the pharmacist. He was very interesting also. It is just amazing the mixture of drugs that are used in this. After the 6 days of radiation treatment Alex will start on the heavy chemotherapy protocol to prepare her body for the new stem cells. The first chemotherapy drug is called Thiotepa. This is a new chemotherapy and has some interesting side effects. She will receive this for 2 days. This chemotherapy is secreted through the skin so Alex will have to be bathed 3 times a day while getting this drug and for 2 days after. 12 baths in 4 days! Crazy! The next chemotherapy is Cyclophosphamide. She has gotten this chemotherapy previously. This will last 2 different days and comes with the rescue drug Mesna. Alex will also receive a low dose of Methotrexate after the infusion of the transplant to suppress the new immune system. The other drugs used are anti-rejection drugs and infection prophylaxis. She will be on anti-bactierial meds, anti-viral meds, and anti-fungal meds. They are SO worried about any type of infection that the doctor who was talking to us saw that Alex was sniffing... blowing her nose a couple of times... and he says "what's going on there? How long have you had that runny nose?" She said "oh, just a runny nose... had it for a few days." He instantly brought someone in to suck out some snot from her nose. Has anyone seen this done? They do not do this with those little turkey baster things you used on your babies....no.... They come in with 4 feet of plastic tubing and hook it to a vacuum that is built into the wall and they stick a smaller hose down her nose and suck a bunch of fluid out of her nose to test. That was interesting. They do NOT mess around.
We also learned that Alex's donor is a female... age 26... and has traveled to Europe in the past. Because of the whole "Mad Cow" incident, this information has to be disclosed. We learned that the bone marrow will have to be "washed" to remove all the red blood cells from the harvested stem cells. A+ and O+ blood don't play well together at first. So... they take out all the red blood cells. She will not get A+ blood until her new bone marrow begins to graft and they start seeing A+ blood show up. It's a really interesting process. She will be getting blood products daily since her own bone marrow will not be functioning and the new bone marrow will take several weeks to engraft. Engraftment starts anywhere from day one to about day 30... there is a contest that takes place. Alex will have a calendar set up in her room and people (everyone here included) will place bets (any dollar amount) on what day you think engraftment will take place. The winner gets the title of knowing the engraftment date and Alex gets the money to buy something fun for herself. :O)
The last person we met with was our social worker. We tried to make a quick escape but she caught us. I know she thought it was going to be a hard talk, but luckily I had already had this talk with Alex a month ago. It was about a healthcare directive. A talk that you should not have to have with your 20 year old daughter. Alex has appointed me her agent in the event that she cannot talk or make decisions for herself. She has filled out the necessary paperwork relating to her wishes for prolonging her life under different circumstances. These were very difficult conversations to have.
That is about it for today. It was a long day. We learned a lot and feel like we are as prepared as we can be. The doctor doesn't really try to sugarcoat anything. He says to be prepared for anything. I can't believe all of this is starting next week. YIKES! It's so incredibly stressful that I find any distraction that I can right now. I don't know how you can really be ready for all this?
Thanks for being here... and boy do we need your ass-kicking vibes! Talk to you all on Monday with more radiation information. Have a great weekend everyone!
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