Hi everyone! I know it's been a quiet blog lately. This is a good thing. We've actually been busy with several different doctor appointments over the last week.
Just to catch up a bit... Alex has REALLY turned a corner and is doing SO good. Her blood counts on the last few visits have been great. They are fluctuating a bit but they say it's normal. Her liver enzymes have returned to normal and I think that makes everyone feel better. She did lose a bit more weight last week so I have put my nagging into over-drive this week. They are a bit worried she has a little GVHD going on with the weight loss, but I am determined to prove them wrong as I don't think she is eating enough to keep any weight on. SO... she is trying her best, along with me to get some weight on her by Thursday's appointment.
Last week Alex had the Pulmonary Function Lab appointment... this is the testing where you blow into a tube and they measure your lung capacity. She failed several of the tests, but in the end she was able to pass the testing. This wore her out completely. After the PFT lab we went over to the Fertility/Infertility clinic to see a special gynecologist. They really like to set BMT patients up with Ob/Gyn doctors so there is someone that can take a look at everything from a BMT stand point and they can be aware of her history for the future. The doctor told Alex that with all the treatment she has had that she would be VERY surprised if she were to find any eggs left. If Alex is completely sterile, the doctor says that she will start menopause very soon. They are going to do some blood testing in June to see what type of hormone levels she has. Other than that, after the visit we were informed that Alex's reproductive parts have extremely atrophied. We were told this would happen. So, I guess we wait to see the results of all the hormone blood testing in June to see what will happen. She was going to immediately put Alex on a hormone estrogen therapy, but after learning of Alex's stroke back in 2007, she is going to wait to see the blood tests. The next doctor was the Ophthalmologist. This appointment went perfectly. The doctor said that everything looked perfect. This was super good news. There has been no damage to any parts of the eye.
Also, last week, Alex had her chest port taken out. It was a pretty quick procedure combined with a bone marrow biopsy. She woke up in a LOT of pain. I really hate to see her cry in pain because I know her threshold for pain is huge... so to see her in that kind of pain is heartbreaking. It took quite awhile to get her pain under control so we could go home. She was a new kid by dinner time though. VERY nice to see something like this not knock her down for days at a time. YAY! She has been taking normal showers again and is loving not having the fluids hooked up and dealing with the giant cord hanging out of her chest. YAY! We won't have the bone marrow results until our appointment this Thursday. I will update on that. Hopefully it's clear and everything looks fantastic! Everyone PLEASE send good bone marrow mojo!
Other than doctor appointments and sitting around recovering, we celebrated Alex's 100 days and 21st birthday on the same day. Such a super cool coincidence. We took Alex to a favorite bar/restaurant of ours. We met with some great friends and I think Alex had a great night. She was cleared to have a couple drinks... no more... and that is what she did. It was such a fun night. It was so nice to get her out of the house and seeing people and enjoying life a little bit. I have to thank my incredible husband for all he does... Thanks so much for doing so much to make this party special for Alex!!!
Other than that, things are about the same around here. Alex looks REALLY REALLY good. She is starting to feel more and more like herself. And as a caretaker it's so great to see the changes finally start to happen. It has been such a long 100 days.
Thanks so much for being here with us... it means so much! I will update again soon. Here are a few photos from the 100 day/birthday celebration.
Alex and Dan at the bar on Alex's birthday
Alex and I
Alex opening gifts... thanks to everyone!
Hanging out with friends at the bar
Alex after her first eye dilation... It was pretty funny.
