Bowling and Forts

Cousins were supposed to come into town this weekend. However, someone was sick, so they couldn't come. The kids were bummed, so we quickly threw them in the car and headed to the bowling alley. They had a great time bowling. Then, dad built them a fort in the basement and had a slumber party with them. They quickly forgot about their cousins and had a great day!

Kindergarten Celebration and Mother's Day Performance

Alexis had a big day today. First, she got to go back to school, as her counts were up to the necessary level (we also restarted chemo as well). Second, she got to participate in her kindergarten celebration. They sang a few songs, said what their favorite things about kindergarten was (science, really!?!?!?), and received a certificate and superlative (sweetest friend was Alexis). 

Then, we ventured on to the Moog where she had a Mother's Day performance. We got to eat lunch together, and then she sang a song to me. It was amazing that after all she has been through this year and with the chemo affecting her voice so much that she rocked it. She did such a great job. We are truly proud of her and all that she has managed to get through this year. Missing half the school days, struggling with her health all while functioning at school is amazing. So proud of our little fighter and hard worker!

Blood

Alexis was a little tired this morning, so we called in. They said to bring her in for a blood transfusion. Her count when we left the hospital yesterday was 7.4, which is considered critical. The doc then said she would probably need one in the next couple days, but if she happened to come up on her own, then we could avoid it. She proved she couldn't, and we went back today to get that blood. She it accessed, blood given,etc without a tear. She is so brave and feeling much better with blood in her! 

Home At Last

The doctors sent us home today. Since her counts were trending upward, they thought it would be fine for her to go home. However, her ANC needs to be above 500 in order for her to be back at school or in public. So, she will be spending lots of time at home the next few days. We also need to watch her red count, as it was holding steady right above the transfusion cutoff. So, we will watch signs at home as well as take her in Thursday to test her counts. Grateful to be home snuggling on our couch as a family! 

Birthday to ER

We started the day with two different birthday parties. Since the doctor said Alexis wasn't contagious at all, we decided to let her go. Alexis seemed to be doing fine besides some drainage from her ears in the morning. We went to the first party, and all three kids were running around on the bounce houses. Alexis and I then left to go to the second party, while Brian and the boys stayed to finish out the first party.

The second party was an awesome Frozen themed party. They had Anna and Elsa there, and they told the whole story and sang almost all the songs. Alexis sat there instead of getting up to dance, which was a little weird since she loves those songs, but not totally out of the ordinary. I thought maybe she was hungry, so we went to get some food. She ate and then ran outside to swing on the swings. 

As things were winding down, she came up and said she wanted to go. As we walked out, she started crying and asked me to carry her. When we got home, she wanted to lay down on my lap. She fell asleep and after a little bit, I thought she felt warm. We took her temp and it was barely under 101, which is the trigger to go to the hospital. I gave it about an hour and took it again, and it was 103 degrees.

I called the oncologist, and she said we needed to come in. I asked if we could wait until after Conner's gymnastic performance, but I got denied.  By time we got to the ER, her temp was 104.3, so it was good we didn't wait.

They ran some tests and determined that in addition to her ear infection she had neutropenia. That means a low white blood cell count. White cells help the body fight off infection. So, having a low (or in her case a non existent) white count means no ability to fight off infections. So, they admitted her into the hospital to watch her and give her powerful IV antibiotics to help her body fight the ear infection. 

As we sat in the ER for six hours waiting for the transfer upstairs, my mind wandered. How could we be in maintenance, which is supposed to be less intensive, and yet she still gets neutropenia? How come she never got that during all the intensive chemo when it is really common? When my dad died, he got very gassy right before, so does the fact she's been burping all day, which is rare for her, mean her insides are shutting down? How can we be at a birthday party where she looked a little tired with no fever turn into 104 degrees 2 hours later? How can she be changing so rapidly? Is this a bad trend? Is she really dying? 

Finally the oncologist walked in as I was streaming tears. I asked some of my questions (not is she dying...I didn't want them to think I we a total psycho). He assured me they have a lot of kids that never have neutropenia during intensive that then get it during the less intensive stages, as their bodies are worn down. He said the burping was totally random. So, I promptly yelled at him for letting us hang out down there for 6 hours straight in the ER and lett my mind run wild. 

We then finally got to our room. We got settled, rested peacefully and made it trough the night without any fevers.