We headed back up for the high dose methotrexate portion. We didn't know how long we would be up there. She would have clinic, get an LP and then start a 36 hour infusion of the methotrexate once her urine reached a certain pH level.
She was so sick going up there. Her stomach was hurting and she was really low energy. We found out that she had C-diff and that was the cause of the extreme pain. She started the antibiotics and started feeling a lot better. They had her on very high amounts of fluid in hopes to protect her bladder. We were going pee at least every 2 hours, if not more. And that was around the clock. It was exhausting! We had to wait until the methotrexate cleared her blood and then we were free to go. I was really hoping it was in time for the wedding. We wanted to be there SO bad.
I must say that cancer is taking a toll on this cute boy. Slade has endured a lot and it has completely turned his life upside down. He is handling it well, but I can definitely tell a difference. I talked with social work and they have suggested a routine. He needs to know what is expected and not be babied because his sister has cancer. Easier said than done, but I agree. He keeps asking me when cancer will be over and repeatedly says how much he dislikes cancer. I completely agree.
Taleah cleared the chemo on Thur morning so we were able to leave Thur afternoon. She had a slight fever on Wed night so I wasn't sure that we would be able to come home. Prayers were answered and off we went. She had counts that were decent and given a thumbs up for the wedding. YAY!! We were all SO excited. She wanted to be a part of it so much!
It felt amazing to be home. It felt amazing to be a part of the wedding. We also got to a part of my nephews baby blessing and best of all.. be home with my kiddos on Mother's Day. However, the mouth sores started coming and Taleah was miserable. She was also in need of a blood transfusion. She felt pretty crappy and it made for an exhausting/emotional Mother's Day. I was so drained by that night, but we had to get ready for our next inpatient stay which was the next day.
We flew up and my inlaws brought the rest of the kids up on Tuesday evening. This stay was going to be Mon-Fri with 2 chemos every day and an LP on Friday (with the triple dose chemo). I was nervous and she was miserable because she needed blood again. Once she received that blood, she was a new girl. Color came back into her cheeks and she was ready to dance. I wish I would've started donating blood a long time ago. That blood is saving lives.
We also started getting prepped with info about the bone marrow transplant. That included a few tests. She had an echo, EKG and hearing test. We are doing a bunch of baseline testing to see if/how much damage will be done from the upcoming chemo and radiation. I must say that I started getting a little overwhelmed about the information. Taleah was listening as well and asking a lot of questions. It is going to be hard... so hard. Emotionally and physically exhausting. I am terrified. Anxious to get it done.
We received a calendar of testing that will be done next week. IF her counts come up enough to do another bone marrow aspiration then we will be on track to have the transplant on June 10. I am praying that things stay on track so we can get this going and done. But we all know that we have no control and this cancer business is on its own agenda.
Another thing that Taleah was sad about missing was her preschool graduation. They were so sweet to include her and let us facetime to be a part of it. We were waiting for a procedure so it worked out perfectly. I won't lie and say I wasn't emotional... I had tears streaming down my face the entire time. It seemed wrong that we were waiting for another LP while her friends were graduating. Taleah held it together just fine and enjoyed it. I had a little pity party and then got over it. She loves that preschool and everyone in it. Again... grateful for amazing people!
We were more than thrilled to go home because we knew we would be home for 10 days! Yay. The kids were excited, getting along and anxious to get home. Of course there was a delay on the freeway so it took us 6 hours, but the kids didn't even seem to mind.
I keep thinking that I want to make her time at home so great, but she isn't feeling well. She is developing mouth sores again and in need of blood.
Honestly, she is anxious and wants it over with. She keeps reminding of that and also doing a pretty good job of explaining what is to come. I haven't had the heart to tell her how much pain she will be in for this next part. And I don't think I will. I am proud of her and the way she is handling things. She never ceases to amaze me.
Me on the other hand... I feel like I am a wreck. I can hold it together most times, but I am tired. I am feeling exhausted on so many levels. It is probably a combination of life but I don't have time to fall apart. I don't have time to be weak. This is all happening and my kids need me, my husband needs me and Taleah needs me.
Cancer is no joke.
I know that and that is why I am grateful for amazing people in our lives. There have been so many little things that have happened, small acts of service, big acts of service and it makes a giant difference. It gives me hope and "pick me ups" when I need them. I know this is not about me but I feel like I have a big part in it. I am the main person that is supposed to get her through this. I am supposed to be strong, support her and get her to the finish line. I am her mom and it is my job. And I am going to do it the best I can. Balancing life right now is my biggest struggle. I think it's adrenaline at this point, but whatever works and gets us through.
I know it is hard for Scott because he has to work to provide for us, to keep our insurance and keep his job alive. I know he would want to be her person too, but he is doing what he needs to do right now. Working together to make this work.
I feel like cancer is taking a lot from our lives, but we are also gaining some things too. It's been a crazy ride, we are learning a lot. It's only going to get "crazier", but we will continue to learn. I am praying for a better attitude and the strength to finish full force.
Heavenly Father knows us and what we can handle. I need to remember that.