Spring Break (Day #10)

Today was mostly uneventful which was a nice change. No transfusions, no hives, no painful eyes... just waiting for the white blood cells to recover so we can come home!

There is definitely truth to the saying, "There's no place like home!"

Spring Break (Day #9)

Today started out as another good day. Maddy's eyes continued to feel better today. (The eye doctor did finally stop by this evening and checked out her eyes. He said that they just needed time to heal from the affects of the chemo.) Maddy was also up and active today. She was determined to learn how to French Braid her doll's hair this morning. We watched some videos on You Tube, and Pam (one of the oncology nurses) showed her how to do it. She practiced all morning. Then we had Subway for lunch thanks to Miss Heckel and Mrs. Buehrer. (Maddy is definitely getting tired of the hospital food.) In the afternoon, Maddy played on her iPad and did some school work (meanie Mom). Then Dad and Julia showed up to visit.

The day didn't end as well though. Maddy's hemoglobin and platelet counts dropped significantly overnight, so she had to get a red blood cell and platelet transfusion today. They started with the red blood cells. After this transfusion, her blood pressure shot up, so they had to give her blood pressure medicine and lasix. Then they gave her the platelets and just as the transfusion was completed, Maddy mentioned her head was itchy. We looked and she had hives starting to appear. This is the first time she has had an allergic reaction to a transfusion before. So... They had to give her Benadryl and monitor her breathing. Needless to say, the Benadryl knocked her out. She is now sleeping peacefully.

Never a dull moment!

P.S.- Maddy received a card from a friend of a friend today. In the card, the friend mentioned a song that she said reminded her of Maddy. We listened to it and we agree. It was a good day to hear this song and remind us that we are not alone- that God is watching over us. We thought we would share:

http://www.dailymotion.com/video/xgojag_mandisa-stronger-slideshow-with-lyrics_music

Spring Break (Day #8)

God is good ALL the time, ALL the time God is good!
Today was a GOOD day...

Maddy was finally able to open her eyes today and keep them open without pain. They are still watering, but we can handle that. An eye doctor is going to come tomorrow just to check her out, but hopefully she is on the road to recovery.

Maddy was due for a dressing change so she took a nice long shower today. (A reminder that we often take the little things in life for granted until they are taken away.)

Maddy's blood pressure has been holding steady so they have decided to back off of the medication to see how she does on her own.


Dad and Julia, armed with hand sanitizer and masks, came to visit this evening. It was so good to see Maddy and Julia together. They were huddled around the iPad playing games together. (Thanks to everyone who made this possible!)



Thanks to everyone for continued thoughts and prayers! They truly do help us get through each day.

P.S.- Maddy wanted me to let Mrs. Hurst know that Dad did share the cookies. Also, she wanted to let Megan know that the monkey has slept with her every night since we got to the hospital.

Spring Break (Day #7)

Besides her eyes still hurting, Maddy had a fairly good day. She actually woke up and was hungry. Of course she wanted her left-over Spicy Italian sub for breakfast! Our old Maddy coming through... She also ate a little lunch and supper- the first time she has eaten all three meals since we got here.

She continues to worry about her shot every day. She pointed out today that the doctors lied to her about it being a "small" shot that would't hurt. She also noticed that her white blood cell count has not gone up at all yet, so she has concluded that the shots aren't working. The doctor tried to explain the process to her, but she later told me she didn't listen to him! :)

We are hoping each day continues to get a little better for Maddy. Now if she could just keep her eyes open for more than a minute without watering and pain. That's the goal for tomorrow.

Spring Break (Day #6)

We are definitely going to need a vacation after this "vacation". We are getting very tired! Maddy is counting the days. She asked me what day it was this morning. I told her it was Tuesday (after double checking). A while later, she informed me that if she had to be in the hospital for 10 days, she only had 4 days left. She told me, "I figured it out!". I guess her second grade education is paying off!

Maddy's eyes are still bothering her. She was up all night with pain. The doctors still think it is a side affect of the chemo. We are continuing with eye drops. Maddy layed around all day with her eyes closed again. It makes trips to the bathroom very interesting- IV pole, tubes, and "no eyes"!


Still looking for the pool...

Spring Break (Day #5)

Today had it's ups and downs! I think I will start with the ups:

With the help of the blood pressure medicine, Maddy's blood pressure came down. She had a good night of sleep. She woke up and had her ultra-sound of her kidneys. (I didn't realize how nervous I was until I was in the room with her watching the screen as the technician did the test. I instantly got sick to my stomach just thinking about the idea that there could be something wrong with Maddy's kidneys). Fortunately, we did not have to wait long to find out that her kidneys are functioning properly. They are attributing her high blood pressure to the variety of other "stuff" going on with her and they feel that it will eventually correct itself. Until then, they will control it with medication.

Another up- My friends Deb and Cindy rescued me for a couple of hours and took me to lunch. It was good to get out of the hospital for a little while. Thanks Deb and Cindy! I did have strict instructions from Maddy to come back though. Her dad took a little offense to this... : )

The sun was also shining today. It just makes me feel better to have the sun out even if it is still cold.

Now for the downs:

Maddy woke up saying her eyes hurt when she tried to open them. As a result, Maddy basically kept her eyes closed ALL day- most of the time sleeping with her blankets pulled up over her head. Every once in awhile, she would wake up and scream that her eyes hurt and we would put a wet wash cloth over them. We haven't figured out what is going on. If it is not better tomorrow, I will be a little more persistent to figure it out.

Maddy also got her daily shot and again was not happy about it. She worried all morning until she got the shot and then worried all day about getting another one tomorrow! (They did use a much smaller needle today though, but Maddy still said it hurt.)

Julia has a cold so can't come visit her sister. I think they miss each other. I will remind them of how much they really do love each other the next time they start fighting! : )


That's about it for today. Maddy just woke up screaming for the washcloth for her eyes...

Spring Break (Day #4)

Today was a better day. The worst part for Maddy was "the shot". The needle the nurse used was quite a bit larger than what the doctor had told us it would be. Mom made sure that the next time, the right needle would be used. Hopefully, this will help. Other than that, Maddy is just tired. Her blood pressure has been running really high so they are trying to figure out what is causing this. They have reduced the IV fluids they are giving her, running some tests, giving her two different blood pressure medicines, and they are going to do an ultrasound of her kidneys tomorrow. They want to make sure her kidneys are functioning properly- kidney issues can cause high blood pressure.

We'll see what tomorrow will bring...