Friday, July 25, 2014

Adjusting- up to day 39 post transplant

I guess you could say I am a homebody. I've never loved vacationing too long with kids because they don't sleep as well, we are out of the "norm" and it is exhausting. Ironic because that is what we are doing and have been doing since March. I love my routine, I love STG and I love being around people that I love and feel comfortable with. This is all pushing me past my limit and challenging me in so many ways. I am learning to make the best of our situation and "be happy" with what I have been given. People keep saying that home is where you make it. Oh I am trying. To say that I am happy all of the time would be a lie. I wish I could say that I am doing everything I can and am super happy but I don't and am not. There are times that I feel sorry for myself, there are times that I cry watching Taleah suffer, my anxiety is through the roof (I prob need meds), Taleah struggling with pills and seeing her throw up over and over, being without Scott and the kids crying because they miss their dad and the stress of it all... it gets the best of me sometimes. Luckily, we have the best support system ever! They make it possible, they lift us up and pick me up over and over again. I guess I just want to document the realness of this all. It totally sucks and is super hard, but we are learning and growing. Taleah is seriously a rockstar and pushing through and getting stronger, Makes me proud.
Being with all of my kiddos makes me happy and keeps me going. It is totally exhausting and kicking my trash, but is worth it to be under the same roof. I had a day and a half by myself with no help and I was up for the challenge, It felt good that I did it and survived (it sounds so dumb that I was able to care for my 4 children by myself...slightly pathetic but an accomplishment).
We aren't able to do a lot, but we can spend time on iPads, play games, play on the grass, have dance parties and craft. 
 We have had weekly clinic appointments and labs are still looking good. Very grateful for that and glad that it appears that her bone marrow is working and growing.
Unfortunately, Taleah caught the cold that has been going through our family. She started with a runny nose and a dry cough. We did a nose swab for a viral panel at clinic and tested positive for Rhinovirus (common cold) but they said to keep a close eye on her. She had a temp that had been hovering around 99-99.5 for 2 days. I had a feeling that a fever was coming. She ended up slightly fevering so I had to call and give the information, and that resulted in an automatic admit for at least 2 days.
Just when we were getting cozy at home and adjusting to a new routine... bam! Freakin cancer. It does that. It ruins all plans, catches you off gaurd and kicks ya in the gut. Poor girl. She was loving her life outside of the hospital and back we go. However, we were bummed at first but then we walked in and it felt like home. Weird right?? I was a little confused that I felt that way, but I did and thought that we better embrace it. Taleah is a great example of that. I seriously keep thinking that I am not cut out for this and then I look at her it reminds me that we can do this. I know that this is not my journey and I am not suffering half as much as she is, but it really does have an impact on all of us. She is doing the hard parts, she is enduring all of the pain, and she is rocking it. I mean she struggles with the pills and we battle it for about 20-45 min every day (twice a day) and she has moments where she feels like crap but she is making the best of it. I am a proud mommy and learning from her every day.
 We are really hoping that the fever is a result of the cold and that we can get out of here at 48 hours. We are where we need to be to keep her safe... just in case. It feels alright to be at our second home away from home.
We can do hard things (my attempt at a pump me up, positive saying, positive thinking... I think it is working)!

Sunday, July 20, 2014

The last little bit... (Day 23-34)

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. 

Tuesday, July 8, 2014

Day 22- minor setback

The past couple of days have been a little rough. She has struggled with nausea, diarrhea and pain. We have been slowly lowering the pain pump and taking out nausea meds. She has also started taking a few things orally. Watching her suffer some more is still heartbreaking. It doesn't get easier.
The plan was to start shots that help boost the immune system by day 21 if she wasn't an ANC of 500. I was so excited when we woke up and received the news that she was 500. YAY!! They would consider it engraftment (accepting Tait's marrow and building an immune system) day as long as the following day was 500 as well. Everyone was so excited!
She was allowed to leave the room for the first time in 24 days. She was so excited to ride the bike and actually felt good enough to do it. She was going pretty strong for 45 minutes.

She was excited to give a matching elephant to a little friend a few doors down. They are close in age and I think she was just excited to see another kid. Made me happy.

We went to bed really hoping that the next day would bring good numbers. She even prayed that she would stop throwing up and have a good ANC. It made me so happy to hear her pray for that but also a little nervous because of the what ifs. I think she is excited to be discharged and be a little normal.
It is also difficult and I have mixed emotions about the fact that my other kids are sick. Runny nose, cough, ect. It sounds like no big deal but it is a HUGE deal for Taleah. I want to be a family so bad but I have to try and be level headed and do what is best for all of us.
I wasn't thrilled when they came in and said her ANC and WBC had dropped. The ANC is 400 and it needed to be 500!!! Dang! However, the platelets had risen on their own and the monocytes had stayed the same (I wouldn't know what any of this meant if I wasn't a cancer mom). It is good that everything didn't drop but I was crushed. I wanted everything to keep going in the right direction. She is still having more diarrhea than they would like. Something we will be watching for is Graft Vs Host Disease (GVHD). I really hope that is not the case, but we will just wait and see. 
If her ANC is 400 again tomorrow, they will most likely do the shots to boost the immune system. I hear it is fairly common but I just wanted her to do it on her own SO bad.
This is all a reminder that this is all out of my hands. It is so hard to watch her suffer. It is so hard when things don't go the way you have planned. It is tough to miss my other kiddos and not be there for them when they are sick. Ugh. Feeling a little discouraged and I am sick of her suffering. Again, it is out of my hands and I need to accept it and have faith. Easier said than done BUT it has gotten us this far so I need to trust.
Please keep her in your prayers. 

Friday, July 4, 2014

Day +14 to Day +18

It has been quite the rollercoaster. I really thought that Taleah would engraft by day 15 or 16. I feel like the doctors thought so too… she had such a high cell dose and it was from an infant… boy have we proved them wrong. 

Tait and Sloan have showed their support this week. We were hoping it would bring good luck. 

She has been up and down and it has been painful to watch and be a part of. She has some serious moods and I am really struggling with it. She has some happy moments but she treats most people like crap. I try not to let her get away with a lot but it is really hard. I am not sure where to draw the line. 

She had a WBC of 0.1 from day 13-15. It went up to 0.2 on Day 16 and then stayed there on Day 17. 

Day 18 showed a WBC of 0.5 and an ANC of 100. That is a big improvement and I am hoping that it will continue to rise. They said things can fluctuate for a few days but I am really praying that we are on the upward climb. We are slowly trying to get her to drink water and start slowly prepping for oral meds. Her morphine pump was also lowered. She will have to be on all oral meds, be eating and drinking a little and off the pain pump before we can go home. 

Scott was able to come up for the part of the week and weekend. We were able to spend part of the holiday as a "normal" family (even though it felt wrong without Taleah). I hadn't been with Slade for 2 1/2 weeks and it was so great to be able to take him to do something fun. It was a fun filled day!

I hated going there without her but needed Slade to feel normal. We continued on with the night time festivities and had a lot of fun. But again, it just felt off without her. I couldn't help but worry and think about her most of the time. Even though she hasn't been liking me for the past couple of days, I still missed her. She spent the day with aunt grammy and played and played. She spent the evening with Tabes and crafted away. I felt better leaving her with people that she loves and adores. 

I think she is taking her frustrations out on me and that is ok. I am pretty sure she is over all of this and just wants to feel noromal. I don't blame her but I know we have a long way to go.

It is so hard to explain the emotions that you experience during a trial like this. It is hard to watch life go on as normal for everyone else. I love seeing others having a good time, but sometimes it makes me miss the life we used to have. However, I hate when people don't want to talk to me about the great things happening in their lives because they don't want to make me feel bad. I know all of the other cancer moms understad how I feel. It's hard to put into words. Mostly, you just want to feel as normal as possible amongst all that is happening. And it is difficult for someone to be "normal" to us for fear of saying something wrong when we are in such a sensitve state. I guess it basically goes back to wanting things to be how they used to be… and that will never happen. This entire cancer journey has changed me, it has changed us and we will be forever a part of this cancer world. We have learned so much and grown a lot and I know there are things that I would have never learned any other way. It's a crazy ride, but I am grateful for the people that are taking it with us. We wouldn't survive any other way!