Postponed Again

Maddy had a good week last week.  She even got to go to the park to have lunch with her classmates on Friday.  We also had a busy weekend and enjoyed some time together seeing some family and friends.  Maddy had blood work today and her counts are still not high enough for treatment, so it has been postponed again.  We are hoping that next Tuesday she will be ready.  This is getting close to Relay for Life.  We have decided that we will just tell the doctors that Maddy has to be discharged by Friday.  If not...  there may be another great escape!

Treatment Postponed

Maddy had bloodwork done today.  Her counts actually dropped from Friday, so her next treatment has been postponed until next week.  We will again take advantage of the extra time together at home.

P.S.-  Some pictures of Field Day!

Good Day

Maddy has felt better and been more active everyday since she has been home.  Her counts are not the greatest, but they are climbing right now.  She took this opportunity to join her class for Field Day today at school-  with most events outside, we thought it would be good for her.  It could not have been a more perfect day!  Maddy played and laughed with her friends.  It was good to see her with all of her classmates.  They were excited to see Maddy as well.  In anticipation of having to go back to the hospital next week, we plan to take advantage of the great weekend ahead!

Hoping everyone is able to take a moment to enjoy the little things in life this weekend.

Home Again

Maddy's white blood cell count was up today and she was feeling better so we were able to talk the doctor into letting us come home. Maddy is scheduled to be admitted next week for her next treatment, so I think the doctor felt sorry for us and wanted to give us a break. Maddy had to get a transfusion of red blood cells and platelets before she could leave and we had to get set up to be able to continue her IV antibiotics at home. Maddy is glad to be home. She actually ate when she got home- the first time since Friday when she went into the hospital. The visiting nurse came by the house to show us how to use the IV pump and get it hooked up to Maddy. Maddy now has a little "fanny pack" to carry around that holds the IV pump and bag of antibiotics. The bag is black- Maddy would have preferred lime green! : )

The best part of this day... When we got home, seeing Maddy and Julia put their arms around each other and walk into the living room smiling and laughing.

Jinx

Well, we did not reach our goal! Maddy continued to not feel well and started to have a lot of pain and discomfort during the night, but she was not running a fever. We finally broke down and called the doctor when Maddy could not even sit up or sleep and at 3:30 AM, Maddy and Russ were headed back to the hospital. I got Julia taken care of and then headed to the hospital later in the morning. Maddy's symptoms are pointing to some kind of infection. They have Maddy on three different antibiotics and morphine for the pain. She had a CT Scan this morning and they are watching for any signs of the infection. Unfortunately, because she has no immune system, those signs don't always show up until the white blood count starts to recover. Maddy is feeling better and her pain is under control. We are now hoping to get things figured out, so we can come home soon!

Down and Out

It seemed like this week was VERY long. It started out pretty good- Maddy felt well and was able to Skype with her class and get a few other things accomplished. We knew her counts would be dropping, so we tried to pack in as much as possible early in the week. By Thursday, she had bloodwork and all her counts were way down. Russ and Maddy took a trip to the hospital for transfusions Thursday evening and didn't get home until 1:00 AM. Maddy felt pretty miserable all day today. She was tired and had lots of aches and pains. She doesn't have much energy at all. Her immune system is wiped out, so we have to watch for infections. Our goal is to stay out of the hospital this weekend!

We're Home!

Maddy had her last treatment this morning and had to get fluids for eight hours afterwards.  The doctor told us we would be able to leave the hospital at 8 PM.  Maddy had her shoes on waiting for the nurse to come in to do vitals and unhook her IV.  She was about to do it all herself when the nurse finally came in around 8:15.   As soon as he was done, we took off before they changed their minds!  : )

I hope all mothers out there have a wonderful Mother's Day!  (I know I will now...)

Update- Day 4

Maddy continues to do well. She had a transfusion on Thursday which has given her a little more energy. Her appetite for hospital food isn't the greatest, but she did eat the Kentucky Fried Chicken, mashed potatoes, and cole slaw she requested for dinner tonight.

She has 4 treatments down and one more to go tomorrow. Our goal is to be home by Saturday night!

Update- Day 2

Maddy is doing well.  She had her spinal yesterday and received her first two chemo treatments.  This chemo can affect the kidneys, so they are monitoring this.   She will continue getting the two chemo treatments each day for a total of five days.  

Last night, Maddy was in a good mood.  We went for a walk and searched out all the little babies in the PICU.  We also scoped out some more rooms.  We found the room we want next time-  it is big enough for two beds and the big reclining chair that we found on a previous visit! :  )   We also convinced the nurses to swap out our TV remote/call button with one that actually has numbered buttons and can go up and down channels.  It was a very productive walk!  : )

Today, Maddy was very tired.  She had to be woken up throughout the night and "tiredness" is one of the side effects of the chemo, but she is as ornery as ever.

Induction 3- Day 1

Maddy had bloodwork today and her counts have "recovered" enough to start the next phase of treatment tomorrow.  She and her Dad will be heading to St. V's in the morning.  This visit will hopefully last for only five days and then Maddy should then be able to come home if there are no other complications.  Unfortunately, we will then have to start up the daily shots again until her white blood cells recover.  On day 22 of this phase, she will return for further treatment and then she will have a recovery period again.  The next step will then depend on what path we take for her extended treatment- something Russ and I are still struggling with.

First Communion

A Picture Is Worth A Thousand Words......