On June 1, 2010 our two year old, "Little Air Bear," was diagnosed with Childhood Acute Myeloid Leukemia (AML) Type M7. After enduring 146 days at Primary Children's Hospital, Erin is now in remission and living a full life at home with our family. Her strong will and constant happy smile is an inspiration to us all. Through our difficult circumstances we found great strength and peace in our Savior, Jesus Christ. Thank you for checking in on us.

Tuesday, June 29, 2010

We're HOME! See ya AML!

Yesterday morning (Monday) after I went running I came back to find out that we were being sent home and Erin has finished round #1 of her Acute Myeloid Leukemia treatment. It's funny how I can sit in the hospital room all morning and have no one come in. But just when I slip out for a run the Social Worker and our Oncologist decide to visit. We were given the okay to go home because Erin's ANC has been moving up. It was all so exciting, but we were slightly unprepared because Erin's carseat was in Logan and I didn't have a car to drive home in. My mom took the older kids and John hopped into the van (good thing, because we had SO MUCH stuff to bring home) and brought up the carseat to me and took us home.

It was nice to just talk and ride in the car with John for the drive home. We have really only seen each other in passing in the last month. There was one day a bit ago when he came to swap me places and I just looked at him and thought, "wow, I haven't talked to him for days." It's strange to think that way about your husband. It's so nice to be together as a family.

I had high hopes and dreams for having a sit down family dinner (that my mom gave us) at the dinner table for the first time in 29 days and then to follow with a fun and spiritual Family Home Evening. We had dinner with a lot of whining and crying and without going into too much detail on the FHE let's just say it lasted about 2.5 minutes and ended with just about everyone in tears. It's amazing how our family was so-not-together. We are all short on sleep and the biggest problem is that the kids have had no routine for the past month. They just don't have a clue what we expect of them and what they should expect from us. And, Erin is a bit spoiled (bless that little darling!)

After devouring some delicious chocolate mint brownies my mom made we got the kids into the tub. At first we weren't going to let Erin in the tub with the other two because we have to be so cautious about not getting her central line bandage and her tubing wet. I fixed the tubing up into a ziploc baggie and then we used a sticky clear window thingy called an Aquaguard over her bandages. She was quite a plasticky site, but she was so happy to get in the tub with the other two. We sat over the kids like hawks making sure no one splashed or dumped water on Erin. Oh, what crazy things we have to do now. It's tricky finding a balance.

We got the kids to bed and it was such a good feeling having family prayer as an entire family. It's so nice to put the kids to sleep, they are so quiet and so sweet looking when they are asleep! We cleaned up the kitchen and then at 10:00 pm the Home Health Nurse came to teach us how to administer Erin's Fortaz (antibiotic) through her central line. At the hospital the nurses hooked up the Fortaz to a pump, but here at home we have to sit by Erin and in small increments give her the medication over a period of 5 minutes. We will do this 3 times a day 10:30 pm, 6:30 am, and 2:30 pm. We set clocks in the house and the alarms on our cell phones so we wouldn't forget to give it to her today. We'll get this really good when it becomes more of a routine. After some training and paperwork the Home Health Nurse left at 11:30 pm. Exhaustion has just become second nature.

Today (Tuesday) has been a great day! We got a schedule going for the morning and I just had such an enjoyable time teaching piano lessons today. I am so blessed with such fun students. We carted Erin off to my mom's house so that she wouldn't be in contact with anyone while I was teaching. Her ANC is 300 (as of Monday) and we won't have it tested again until Thursday. We are just crazy with taking precautions and hand washing and everything. This really changes a lot of things, but it's all good.

Cecily and I took a little trip to The Kutting Edge Salon where we were both treated to haircuts and some pampering. I was so thankful that my hairdresser Kristy had a last minute spot today because I just didn't know when I'd be in Logan to actually set up an appointment. Erin has been playing all day and just enjoying having her home to move around in. She plays with her toys like she's never seen them before. She is eating and drinking better here at home than she did at the hospital. I talked to her today and asked her if she liked being home. She said that she did. I told her that we would have to go back to the hospital again and I asked her if that was okay and she said nodded her head "yes." I'm amazed at how much she seems to understand.

Erin is scheduled to have her spinal tap and bone marrow done on Wednesday, July 7th and then on Friday, July 9th she'll be admitted back to the hospital for Round Two (of five) of Chemotherapy. We're 1/5 of the way done. Phew!

Tags: "Childhood Acute Myeloid Leukemia" "AML" "Leukemia" "M7" "Acute Megakaryocytic Leukemia"

6 comments:

  1. Today was boring. It hit 5 pm and I realized there was no where to go. I had to stay and keep working. I miss you guys!

    ReplyDelete
  2. We're so very glad that she's home!!! Congrats Erin!!!

    ReplyDelete
  3. I'm so glad you get to have a few days at home with the whole family even if everyone is a little emotional and confused.

    ReplyDelete
  4. Jumping with joy for you all!!!! So glad!

    ReplyDelete
  5. I'm so glad you're all home together!! :)

    ReplyDelete
  6. WONDERFUL NEWS! Our kids are thrilled, but the boys are getting over an annoying (contagious) skin virus, so no playdates for Reagan and Cecily. Let us know if you need anything for us to pick up for you and your family! Or if you really have a craving for something for dinner. We owe your kids a pepperoni pizza!

    ReplyDelete