Needless to say... things have been a bit crazy.
The week after her ANC hit 500 was an emotional rollercoaster. Her bone marrow seemed to be working but her ANC was not cooperating. Everything else pointed to the fact that her ANC would be well over 500 but it was not showing that. Taleah still felt decent part of the day and pretty crappy too. She still threw up a couple of times a day. She LOVED getting out and socializing with everyone.
We even had playdates with some other cancer kids. A late night meeting to "bling" their masks.
I was still a bit of a mess because everyone was convinced that day 21 was going to be engraftment day. I am a planner so when it didn't go as everyone thought... I was a disaster.
Because they thought it was happening... we started lowering her morphine dose, taking pills orally and all of the steps to be released from the hospital.
Engraftment day ended up being day 25. Yay! We were so happy. We had pretty much completed all of the steps to be released so they let us go on her "engraftment day". Apparently, we did things a little backwards. Regardless, we were busting out!
Taleah was able to ring the bell before we left. Everyone was cheering and sang a song. The second she started walking to the bell, I could barely hold it together. It was so emotional. They told her to ring the bell once they were done singing the song, but she rang the bell to the song. It was awesome!
We had plans to move to a basement apartment in Highland. Some things happened and it fell through the night before we were being discharged. I was devastated and stressed. The planner in me was upset that my plan had been changed yet again. However, it was because of something personal and serious so I was understanding.
Now we were on the hunt for something quick... and I felt "homeless".
Luckily, we have some awesome friends that we have been staying with for the last 3 months. They graciously offered their place until we found something else. We were totally packed up and living out of boxes but at least I felt like we had a home for a minute. We absolutely adore their family and know that we will never be able to repay them. Pretty awesome peeps if ya ask me.
We have an awesome support group and social media was a huge help in our search for a temporary home. A lot of really great people pulled together and found us something that has turned out to be great. I am constantly in awe of the gracious people in this world. It feels good to have a "home" for the next couple of months.
Let's just say that I was a little nervous to leave the hospital. I would be required to be a mom, nurse, caretaker, cleaner, ect. Kind of a lot. Leaving the hospital was bittersweet because we had lived there for so long and the nurses took such great care of her! The knew it all, did it all and then I was all of a sudden responsible. Talk about pressure.
The meds alone are a giant responsibility. I spent about 2 hours on our first night home getting everything ready and prepping meds for the week. She also went home on TPN because she wasn't eating yet so that added another thing to be responsible for.
We had to keep the babies separated from Taleah for a little bit longer due to their constant runny nose. I hated the fact that we still couldn't be a family. We had a family reunion that was very accommodating for Taleah and what she could and couldn't do. She wanted to go but felt like crap the entire time. There were a few good moments that made it worth it, but also broke my heart at the same time because she couldn't be like all of the other kids. Sadly enough, she didn't even care.
She has been having more hours of feeling pretty good every day. There have been evenings that she has wanted to ride a tricycle and walk around the yard with the kids. She has been wanting to sit up and craft, play games and paint nails. This is huge. It doesn't last all day, but some is better than nothing.
Taleah does a lot of hanging out. I think this is because of the way she has grown up, being surrounded by adults and teenagers because she hasn't been able to play with kids. She has come to adore Nathan and Sadie. She would always sneak upstairs to chat with Sadie about who knows what. Again, this family has been a blessing in more ways than one. They have been more than a house to live in. They were a huge part of Taleah's recovery.
I am enjoying the fact that she is wanting to do stuff and be a part of things (some of the time).
She still throws up at least once a day, she waddles a little bit, has a hard time smelling foods and is hardly eating at all.
It feels so good to be out of the hospital. It feels so good to have my littles under one roof, but it is SO exhausting. I feel like I am running low but I know that I can't run out. It is not an option. I am independent so it has been very difficult to accept endless help from everyone. I so badly want things to be "normal" again but I know that will come in time. I just want to be on my own, be my own mom and be able to take care of my kids by myself. I know that it will be hard. I know that it is much easier with extra hands around, but it is something that I am longing for. I am not saying that I do not appreciate the help. I know that it is a huge sacrifice for everyone that is taking time away from their lives to come up here and help me. I am forever grateful! I am not even sure how to explain what I am feeling.
As far as the bone marrow transplant goes... we will continue to do weekly visits with lots of blood work. It is looking like it is working but we really won't know until we do the bone marrow aspiration around day 100. That will be able to tell us how much of her marrow is her donor (which we hope is 100%) but it doesn't always work that quickly or efficiently. Right now we are trying to keep the meds just right, keep her healthy and wait. We will keep waiting for something that is essentially out of our control. I can give the meds and do my best to keep her healthy and build her strength, but that's it. That is all I can do. The rest is not up to me. I guess I am a control freak so it is hard for me. Patience. Still trying to master that one.
I would say that she is doing pretty darn good. She is so tough and pushes through when I know I would give up. I am sort of a mess but trying to get it together.
Organization and routine are going to get me through the next few months.
I need to remember.. to Rely on Miracles.