Happy Thanksgiving!

I just wanted to quickly say that Maddie is doing well and we are spending this Thanksgiving at my mom’s home with my husband, my sister, my stepdad and my mom. We truly realize how much we have to be thankful for this year, especially in comparison to the uncertainty and craziness of last year. Last year we had turkey delivered to the hospital, but it was a very scary time and we found it hard to see too far ahead.

Many of you won’t read this until the holiday is over, but please take this time to truly be thankful for your health and your family. If those two things are good in your lives, you are incredibly blessed. Hug your children an extra time and let them know how much you love them.

We are so thankful that we are all still here 13 months into this nightmare. We appreciate those of you who have been so supportive of us during this journey. Thank you so much for that!

Happy Thanksgiving!

Love to you all,

Liz, Brandon, and Maddie

Good counts!

I don’t want to jinx us, but Maddie had the best counts she has had in a while today. They actually look like normal maintenance blood counts! So Maddie and I are actually planning to take a little road trip this weekend with my sister Kathryn for her birthday. My Dad and Margaret moved to Charleston at the start of this school year and we have not been able to visit their new house yet. We are excited to see them and the kids and to celebrate my sister’s birthday. We may actually head out to Kiawah and see the ocean for a little bit too! Hopefully it won’t be too cold.

Thanks for checking in!

Love, Liz, Brandon, and Maddie

Busy week

I am trying to catch up after the MileStones Walk this weekend. First and foremost, I want to thank everyone who participated in any way, whether you donated or came out and walked with us. We had a fabulous time and the weather turned out to be beautiful despite forecasts to the contrary. Our team has raised almost $10,000 for CureSearch, so I am really proud of how well we did. Maddie also seemed to have a great time at the Walk and was so happy to be outside with all of the people.

Maddie’s counts looked great on Monday. Her ANC was up, so she is not immunocompromised and we have been out and about enjoying ourselves this week. Her liver function tests were back to almost normal so she was able to receive her normal dose of chemo. So hopefully it was a fluke, but we will be keeping a watch on it. And after the IVIG transfusion last week, she seems to be making her own red blood cells again, so we hopefully will not need another blood transfusion for awhile. She seems to feel really great right now, so that makes everything more fun.

Check out pics from the walk!

Love to everyone,

Liz, Brandon, and Maddie

Lots of news

I will start with the good stuff:

Maddie is still in remission! Her cyto-genetic results came back with no evidence of leukemia in her bone marrow. This test was done last Monday, but the highly sensitive results take about a week to come back.

We are very excited about the MileStones Walk in Charlotte this weekend. I picked up the t-shirts yesterday and they look great. We will be having barbecue for all our team members and a cake made by Kathy Allen. We hope the weather is good this weekend so that lots of people come out and support this fabulous cause. We have rented shelter #5 at Freedom Park as a meeting place for our team. If you come out, please stop by and say hello. The shelter is right across from the band shell in the park where the walk will begin and end.

We finished up steroid week on Saturday and it was slightly better than the last time, so maybe she is beginning to tolerate them better. We also had a great weekend! Brandon was here for 4 nights and we had a great time enjoying more family time than usual on this Veterans Day weekend.

Okay now to the less good stuff….

Maddie may have a chronic case of Parvovirus. What is means is that we have to give transfusions of blood products more often than we would like. We got a red blood transfusion Monday because her hemoglobin was dropping very fast, making her very anemic. We then went back today to get IV Immunoglobulin which is a blood product that gives her immune factors that she is not producing in her own blood right now. Our doctor does not think she is contagious, but we are taking precautions anyway and do not plan to let her touch other people at the walk this weekend.

While we were there today for her IVIG transfusion, we checked her blood for a few more things. It turns out that some of her liver function enzymes are elevated, so we had to stop all chemo again today. We are not really sure why this is happening, but it is most likely from all the chemo she is getting.

We are just trying to learn to accept that there is always something abnormal. If we ever get to see normal again we will be thrilled (even if it involves chemo daily). At least while we can’t give chemo, she does not have to fast at night for 3 hours. She is feeling really good since her blood transfusion Monday. And the most important thing is that she is still in remission. We can handle the other stuff.

Thanks to everyone for checking in with us.

Love to everyone,

Liz, Brandon, and Maddie

Good week so far

We started into the hospital early Monday morning, hoping that counts would be high enough for her to get her chemo. If so, she would have a procedure to put chemo into her spinal fluid and take a sample of her bone marrow to make sure she is still in remission. This meant she had not eaten in many hours which is always very tough for her, especially since I am a food source and I am right there with her. Anyway, her counts were not quite there, but once again our oncologist was willing to let us start since they were very close and she was clearly recovering as she had come up alot since Friday. So we got to have her procedure, and it all went well (except for a longer than expected wait) and we were home by early afternoon. This meant that we also got IV chemo at the clinic and were given the go-ahead to start her steroid week. So she had her first dose of steroids Monday afternoon and they will continue through Saturday morning.

Also, Monday evening our doctor called to say that the slide prepared with her bone marrow looked normal and that he would give us more detailed results once they are in, but that he expected everything to be fine based on what he saw. I will post again when I get the full report, which may be another week to get the cyto-genetic test results. So we are very happy to hear that he believes she is still in remission!

So far, steroid week has been better than last time. She is still waking up for a 2-3 hour playdate around 3:30 am, but she is still getting about 8 hours a night plus taking naps. The middle of the night wake ups are not that bad as long as there is enough total sleep time throughout each 24 hour period. I just try to sleep when she does, which can be difficult, but it makes it much easier to deal with her slightly hyper behavior that comes with the steroids. This time her craving is Five Guys french fries, so we go get a large order (a huge sack) at lunchtime every day and that lasts us through the middle of the night snack times and breakfast. Yes, she eats fries for breakfast! We just do what it takes to keep her satisfied on steroids.

I added a few Halloween pictures. Also, I want to remind everyone about the MileStones walk November 15th. It is really important to me, and if you are interested in participating, please let me know.

Thanks again for checking in on us!

Love to everyone,

Liz, Brandon, and Maddie-boo

Maddie was a little shy, but thrilled to see other kids all dressed up!

Maddie was a little shy, but thrilled to see other kids all dressed up!