Merry Christmas...Happy Birthday...With a touch of sadness

I would like to say that we hope that everyone had a wonderful Christmas. I hope that as this new year begins that you remember, each and every day, how very important it is to enjoy every moment that you have with your family. We were reminded of this when we learned of a friend of William's who was killed in a car accident on Christmas day. Chris Heath was the son of William's boss and the son of William's first grade teacher. He was 26 years old. Please pray for this family. As we already know it is very hard to lose your child, no matter how old they are.

Yesterday was Katie's 4th birthday. And it was a wonderful day! She enjoyed the day with both sets of grandparents, all her cousins, and aunts and uncles. She even ate a little of her hot dog and birthday cake. We truly had a great day. As a result today was not so great...Katie was exhausted from playing more than she has in about 2 months. We had to go to Houston again today and she slept all the way there and back...and then took a nap when we got home.




Please continue to pray for us as we attempt to go back to life as normal...Katie will begin going back to daycare as she is able...I will go back to work (though there may be some changes there) and hopefully Katie will get to go back to dance class in January. Thank you for all of your prayers and support.

***Side note: Layla was discharged from the hospital the Monday after we were. She is having many of the same problems that we are. But just as we are...she is continuing to get some better every day.***

Home...

We have had a rough couple of days. Monday, today, and Saturday we had/will have to go to Houston for check ups and platelet transfusions. Katie and I have had a lot of trouble dealing with life in general. She really hates the medicine she has to take (why they can't make this stuff go through her line...I don't know). And when she melts down I get very angry and have trouble controlling it. I just have a very short fuse. I know that I should be so very happy to be home and be with both my girls and husband...but it has been very hard to not be depressed, especially with Katie so sad a lot of the time. It is hard when there is no end in sight for everything that is going on. Now, I look back on things my previous patients and their parents have gone through and I now understand a little better. It is so hard dealing with your child when they are in pain...especially when it happens all the time.

Any way...enough of sadness. We wish all of you a merry Christmas and a happy new year. Take time to enjoy your time with your family and friends.

Home At Last

We arrived home late Friday night. Today (Sunday) is the first time Katie has begun to attempt to eat...she continues to throw up a couple of times per day due to withdrawal from the morphine. She was sad this morning when she could not go to church...after daddy and Laura Beth left, Katie and I got out her Princess Barbie dolls and Barbie house and she forgot all about not getting to go to church. Every day she is getting some stronger. She continues to have meltdowns and cry about having cancer but hopefully that will get better as time progresses. Tomorrow, she and I have to go back to Houston to get a check up with the BMT clinic and probably get blood and platelets. Thank you for all your prayers and gifts...we really appreciate them.

Ode to Sleep...

Exhausted...laying on a hard couch...takes forever to fall asleep...brain is swimming with all the commotion during the day...almost asleep.

"MOMMY I have to go to the bathroom!" Awake again!

Falling asleep...BEEP BEEP BEEP...IV alarms going off....call the nurse, hit the silence button..

Falling asleep...PCA comes in to weigh my daughter...screaming because she doesn't want to

Help PCA...go back to bed...falling asleep...Nurse comes in to administer medication...

Falling asleep...BEEP BEEP BEEP...Alarms going off again..call nurse, hit silence button...

Falling asleep..."MOMMY I have to go potty!" Awake again...

Falling asleep...PCA comes in to take vitals and wakes me up to ask if she has a wet pull up!.... (how should I know...I WAS asleep)

Falling asleep...doctor comes in...it is morning already!

--Christa Connor

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Now you see why we want to go home! We are tired... Please pray that Katie does well over the holidays and that we all get some rest...love you all...

HOME

We are going home tomorrow! We are so excited we can barely contain ourselves! We have a lot to do before we can go home (get all the home care in order and appointments for blood work etc, and PACK a month's worth of stuff!) Katie is drinking more (I remind her about every 5 minutes to take a drink). And she has now taken her first dose of methadone (to help her body adjust to coming off of continuous morphine). They have taken off of all antibiotics, antiviral, and anti-fungal medications. She didn't need platelets today...for the firs time in about 2 weeks! Did I say we were excited? We will be home for CHRISTMAS. Thank you God! He is awesome!

Bliss...

Today I got to enjoy a wonderful day at the Spa! A little band of angels from BVRC bought me a gift certificate to a Spa and Salon down the street from TCH. My parents and sister came and stayed with Katie. She had a really good time and played the whole time they were here. It was wonderful for her to get to play with them. Once they left, however, Katie began to throw a "terrible, horrible, no good, very bad day" fit (a quote from a book...Alexander and the terrible, horrible, no good, very bad day...one of my favorites). She is very tired of people coming in and 'messing' with her. She is TIRED of being in the hospital. Thankfully as I write this she is sleeping. Please pray for her emotional state of being. She is completely and totally tired of being in the hospital. She is yelling at people, shaking her finger and beginning to hit at them. All things that under normal circumstances she would never do...well she does shake her finger at people normally but she comes by that honest!

Anyway, here is my rendition of what my day at the spa was like! (I got a body polish, balm massage, and a facial...I told you the women of BVRC are better than any other in the world!)

When I got there, they took me to a dressing room and told me to take off my clothes (underwear included) and put on the robe and shoes provided. The robe was SO soft! I then went with my massage therapist into a room that looked liked a supped up locker room (much nicer of course). I was given disposable bra and panties to put on and then got into a large pill shaped machine, where my body was steamed for 15 minutes. Then the lady came in and rubbed scrub all over me (legs, back, tummy, and arms). I then steamed again for about 20 minutes. Then she came in and rinsed me off. It was kind of like someone else giving you a shower! Good thing I am NOT modest. LOL Then I had a deep tissue massage with balm. I should not itch again for a while (winter makes my skin so dry). But I have a feeling I will HURT in the morning...when she said deep tissue that is what she meant! The best part was having a facial...I can't really tell you what she did because my eyes were closed the whole time but it was WONDERFUL. She massaged my face, upper chest (around my collar bones) and my arms...it was heavenly. I thoroughly enjoyed myself...and I ended the afternoon with eating a burrito bowl from Chipotle! **Now you know I had a good day! LOL** The only thing that could have made it better would have been a drink from Starbucks!

Thank you so much to the women of BVRC...it is the best place to work...even if you only work there in spirit. My Christmas stocking is up so I still consider myself to be working there! I know for a fact that there is NO better place to work...where else do you get to work with your friends and play around on the floor all day with kids...I mean do therapy with kids *wink*

And thank you to my family who took care of Katie while I was gone. It meant a lot to me.

Thank you to everyone who prays for us. Your prayers are very much needed and appreciated. Prayer is the most important gift you can give us. Thank you, also, for all of the gifts and monetary donations that you have given us. We could not have made it through this year without them. Thank you.

BMT Day 21

Katie's counts continue to go up. Today her ANC was 1.74; platelets were 15; hemoglobin was 8.1. She got platelets today and will probably need blood and platelets tomorrow. They have gone down on the IV nutrition to 18 hours instead of 24. Hopefully she will eat some today. She continues to have diarrhea but all of the studies have come back clear. Therefore they started giving her some Imodium today. Hopefully this will help and make her feel a little better. She has been up some to sit on the couch with me. The doctor even said that her mouth and rash looked better. We are looking forward to going home!

BMT Day 20

Wow...we have been in the hospital 20 days now! It is amazing...Today Katie's ANC was 0.98! If it stays this way or better we should be able to go home next week. They are working on decreasing all the antibiotics that she is taking, decreasing the morphine, and decreasing the IV nutrition she is on. Katie hurt more today due to the decrease in morphine BUT it was manageable. In the afternoon she was up and doing crafts on the couch. All in all, we are doing better. Please pray for continued healing and decrease in pain for Katie. Thank you all for your love and support.

BMT Day 19

Things continue to get better...Katie's ANC is 0.41 today. She had a good day...we decorated her little Christmas tree and are in the process of finishing the gingerbread house that she started with her daddy. She did have to get blood and platelets today, but that is normal. She did have a fever (101) once today but that could have been attributed to getting the blood products. Thank you for your prayers and encouragement. They are helping!

Looking Up

Katie's ANC (absolute neutrophil count; i.e. her white blood cells) was 0.13 today! This is the first time it has been above zero in over a week. When it is 1.0 for 2 days in a row, we will get to go home! She hasn't had a fever all day! And she even played some today...things are looking up!

A Turn for the Better

This morning, Katie felt truly horrible. She had to have platelets at 4 this morning due to throwing up blood and having low platelets. She was feeling truly awful all morning. BUT then her daddy showed up....and she soon was sitting up and playing with her Baby Alive (Isabelle is what Katie named her...because she has curly hair like her friend named Isabelle.) I gave her a bed bath and found that she now has a rash over 90% of her body. They don't know what has caused it but we are now putting steroid cream on her and some other stuff too. We cancelled the CT scan because Katie was unable to tolerate it last night and I would not allow them to sedate her for it. Her fever has gone down. The highest it has been today is 101. Thank you all for your prayers...they are working. I am going home tonight to be with Laura Beth who is sick now...Maybe the break will do me good. =)

BMT Day 14

Today is some better. Katie has felt a little spunkier today...she told several nurses to get out of her room! They did a chest x-ray and found nothing. They are now planning a CT scan for about 8:30 tonight! *This is better than when they woke me up at 11 last night and asked if it would be okay for them to take Katie for a chest x-ray right then! I said, "ummm NO".* Katie continues to feel poorly. Her blood counts are low...she got both blood and platelets today. She continues to have persistent diarrhea. Her mouth is getting some better I think...her throat and stomach/intestines still hurt quite often. Thank you for all of your kind words and prayers. It really does help. Life is not easy right now but I am looking forward to next year when she is better!

BMT Day 13

The doctors say that Katie has the common cold. This could be the cause of her fever, although they are not sure why it gets so high. My mom says that she has heard that this is due to the stem cells doing their job. I don't know, but I just want it to be over. I am tired of being the momma who has to make my child do things she doesn't want to do. I am tired of dealing with these crazy nurses and doctors. I am tired of having my poor baby being so sick. I am tired of seeing my daughter who just 2 weeks ago was running around and being a normal 3 year old...now in the bed and unable to stand by herself without shaking. I am tired of seeing my little girl go from getting some meat on her bones to being as thin as a rail. I am just tired. Hopefully the week will go by quickly.

Continued Fever

Well we made it through the night. Katie continues to have fluctuating fevers. It goes from normal to 104 randomly. Due to the mucusitis (spelling???) she has very thick saliva and chokes on it often. As she told the nurse, "something is just NOT right". Please pray for my poor little girl. And for me, the momma with no sleep. : /

Temperature

Katie had a rough night last night. Her fever spiked to 104. It went down during the night but now it has spiked back up to 104.5. Tylenol and cool rags are about all we can do at this point...please pray this stops soon! Thank you to everyone who prayed for us last night...we love all of you.

Thought for the day

The following is a daily devotional I get from the sermons of Adrian Rogers. It reminded me of what I am suppose to be doing...

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BIBLE MEDITATION:
John 12:24 - “Except a corn of wheat fall into the ground and die, it abideth alone: but if it die, it bringeth forth much fruit.”

DEVOTIONAL THOUGHT:
You can tell the size of a Christian by what it takes to stop him. Hebrews 12:1 says we are to “run with patience the race that is set before us.” And this word “patience” is not used in the sense that we use the word. It literally means “endurance.” Everybody knows that a runner is going to win or lose primarily by his endurance. You cannot quit. When it hurts, you cannot quit. When your lungs are on fire, you cannot quit. When your feet feel like lead, you cannot quit. When your sides ache, you cannot quit! You’ll never be a spiritual athlete if you’re a quitter! No pain, no gain.

BMT Day 11

Today was suppose to be a day of fun...unfortuanately Katie did not feel up to it. Yesterday she was put on isolation precautions due to her fever and runny nose; therefore Santa and his elves could not come in the room. The good thing is though that they let Laura Beth come in. She was so excited to see me and Katie. She was a bit confused when Katie didn't want to play or even sit up. The Chandler's Tree people brought a TON of presents. Katie got a set of princess Barbie Dolls, a Barbie house, a Baby Alive, a Littlest Pet Shop daycare, a Littlest Pet Shop toy pet, a leapster game, and some DVDs. Laura Beth got a pull toy/shape sorter, a piano, and a Elmo talking phone. William got a bag full of goodies to eat, and I got a bag full of stuff to pamper myself with (bath stuff, socks, and coffee.) They also brought a little tree for the room and stuff to decorate it with. Even though poor Katie didn't feel up to it, we had a nice time. We were truly blessed by these wonderful people. Then Laura Beth and I headed for the hotel to spend the night together. It is nice to be away from the hospital for a little while. William is having a tough time of it though (he is with Katie at the hospital). Today one of the lumens in Katie's central line got clogged (she has two so that the she can be hooked up to more stuff). They have put a solution in to dissolve it but so far that has not worked. If that does not work, they will have to do surgery. Please pray for Katie. She feels just rotten and now she is no longer hooked up to a morphine pump, is having diarrhea, and continues to have low grade fevers. All in all she is not doing too well. Thank you for your support and prayers.

BMT Day 10

Once she got a morphine pump, Katie slept...from about 4 in the afternoon until this morning. The one time she was awake, she attempted to eat some chicken nuggets and apples from McDonald's (her favorite) but after taking one bite she said that they tasted bad and she couldn't eat them. Unfortunately she didn't feel up to doing much when Nana and Aunt Ashley were here. Today, she has slept through most of the day with some exceptions. She livened up some to do a craft and a little while Grandma and Grandpa were here. BUT...today she began saying that her ears hurt and her nose was running. Then this afternoon she spiked a fever (103). She then threw up the Tylenol that they gave her. Her fever has come down some...please pray that the fever is just related to her low blood counts and that she gets better soon. Thanks =)

Sad Days

Last night and this morning were really tough for Katie. She was very upset and crying for several hours last night. I think that the meltdown was due to the pain she was having but to be truthful she needed to cry and get it out. She told me how much she loves and misses her sister and her daddy. She also told me how much she misses her 'normal' life (i.e. dance class with her friends, going to daycare with Kate Hagaman, playing with her sister.) It hurt so much to see her little heart breaking. And of course she told me how much she hates the nurses and being in the hospital where 'they do things to hurt her'.

This afternoon was some better after they got her a morphine pump that we have control of. It gives her a continuous low dose of morphine and then when I feel she needs more I can hit a button to give her a little more. The nurse also got her anti-nausea medication scheduled for every 4 hours instead of every 8.

But there is a bright spot....tonight my mother and sister are going to come stay with Katie while I go out to eat with a friend. Then tomorrow, Grandma and Grandpa are stopping by on their way home from Uncle Pie's funeral. And on Saturday Laura Beth and William are coming up for the Christmas celebration! Maybe this will lift her spirits. The nurse said it is going to be a rough week for us...but hopefully her blood counts will start to come up and the mouth sores will go away and she can go home soon.

A bright spot

Some ladies came by today with all kinds of things for Katie and her room. They brought a bean bag chair, a rug, a soft pink blanket, a Dora blanket, a Dora doll who dances, ballerina sheets, books, and pajamas. She wasn't too happy at the time but I did see a smile on her face for the first time today. Then the nurse gave her some morphine for her mouth pain and she felt ALOT better. She has been playing in her bed and drawing. Tonight the hospital provided me with food from Jason's Deli. The guy who brought it said that on the day of transplant that the BMT floor provides food for the family. They provided enough for 3 or 4 people! It was good and I have left overs for tomorrow and maybe the next day! So all in all the day has turned for the better. Thank you for all of your prayers...we can certainly feel them.