Life on the 8th Floor

Katie has not had a fever in about 48 hours. She also has not had problems with her blood pressure in about that long. She is eating well and is in a good mood for the most part (Tonight her giggle box has been turned on). Yesterday after getting to the 8th floor, I went home so that I could go to my doctor's appointment (annual exam...just a check up with my favorite doctor in the world, Dr. Smith) and so that I could go to work. I have started working PRN for a company that has contracts with home health agencies, the school systems, and early childhood intervention programs (ECI) in the area. So far, I am seeing one person for home health and am starting in Madisonville schools tomorrow. William stayed with Katie...and he has had a difficult day. They are now saying that she has a touch of pneumonia (much like her sister did a couple of weeks ago) and that they want to keep her until at least Tuesday to keep her on IV antibiotics. The first doctor that came in did not explain herself very well and as a result she upset William, who eventually told her to get out of his room. Later Dr. Simko came and spoke with him, explained things better, and William calmed down. Dr. Simko has been with us since Katie first came into the ER this past Tuesday. Of course, by the time that they came to talk with him, he was already upset because they had taken off Katie's dressing to do her echocardiogram and did not put it back on (in effect leaving her open to infection). It took me calling and speaking with Dr. Russel's nurse practitioner before they came in to put a new dressing on her. But it is fixed now. Well that is about all for now. Thank you for your prayers. We are doing better.

Update

We just made it to the 8th floor! Yeah! Other than that there is not anything new to report...they do not have any results back from the cultures yet. Preliminary tests show that it is not the flu or a rhinovirus. Time shall tell. Pray for a speedy recovery. Katie has not had any fever since about 2 this morning. Her blood pressure has, for the most part, stabilized and is within the normal range. Thank you for your prayers and loving texts, calls, and messages.

Continued Prayer

We were admitted to the PICU about midnight. They put us in the PICU because she had to have dopamine to help elevate her blood pressure. However, soon after getting to the PICU they weaned her off of the dopamine and her blood pressure has been holding its own. It continues to be low but not so low that she needs medication to assist her body in elevating it. Her fever continues to persist though it is coming down some. Katie's complaints of pain seem to get better when her fever is lower. They are suspicious of a line infection, though it is not as bad as last time. The nurse says that it is possible that we will get to go to the BMT floor today. Please keep us in your prayers.

Prayer Needed

As I write this, I am sitting in the ER with Katie and William. This morning we went to the clinic and got a check up with Dr. Russell and everything was going good. When we got home Katie took a nap. When she woke up she had a fever of 103. We called the oncology people, packed our bags, and headed to Houston. Please pray for us. Ironically we are in the exact same ER room that we were when we were here the first time back in May...it is not a happy time. =/

Home...

Katie and I headed to Houston on Tuesday. We spend TWO hours in the waiting room, just waiting to get blood work and then another hour waiting to get to see the nurse practitioner. They said that everything is where it should be except for her white count which continues to be a bit low. They did NOT have an answer as to why it is still low...We have scans and tests scheduled for the last week in January...and then hopefully we can get her central line taken out for about a month and half. We are planning on doing the immunotherapy beginning about the middle of March. It will be nice to have a break. The immunotherapy consists of 6 cycles that are once a month in the hospital for about a week each.

Tuesday night/Wednesday morning Katie woke up feeling bad and having a low grade fever. I gave her some Tylenol and some Imodium (the blasted diarrhea is back!) After some rest yesterday she seems to be doing some better. Laura Beth has had a cold since Sunday and Katie just finally caught it. William and I seem to have a little touch of it as well. Hopefully we will all get better soon.

As for my job...God has been doing some great things. A friend of mine got me a PRN job while her OT is out on maternity leave...it only will last a couple of weeks but I may be asked to help every now and then even after she comes back. I also have been talking to a woman about a part time job in the school system and with home health. And then today my rehab director called to say that they may be wanting me back full time at the nursing home in Madisonville because the lady from Conroe is not working out. So we shall see...God has a plan in mind and I just have to be patient! LOL (if you know me then you know that this is a very hard thing for me to do...I like to have control of life...hahaha)

Nothing new...

Katie and William headed to the BMT today. Her hemoglobin and platelets held steady since Monday. She needed some medicine to boost her white count. They took her off of the TPN/lipids (IV nutrition that we were doing at night...but now Katie is eating well and doesn't need it.) The BMT also released her from their care back to the solid tumor doctors (Dr. Russell). We have an appointment on Tuesday with them. All is going pretty good. Thank you for your prayers and support.

More of the Same...

Nothing much to report. Katie is doing well. We are still having to go to Houston 2-3 times per week for blood work and to get transfusions. Today was the first day that we did NOT have to get blood products! We were home by a little after noon (of course we left the house by SIX in the morning!) But of course I didn't stay home...I took William to the doctor in Bryan. As for me...well I now do not have a full time job. They decided that since I have to be away so much that they need someone more stable...I will continue to work PRN (as needed) for that company and am on the lookout for more opportunities for PRN work. Thank you all for your prayers and help. We appreciate it!

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.

Stem Cell Rescue Day

Katie was given her stem cells back today. There were four small bags of cells that they gave to her, one right after the other. They were right....as soon as the cells hit her body, she coughed, & you could smell the strong creamed corn smell. It is enough to make you nauseous. And poor Katie has to smell it and taste it. She has thrown up twice since they gave her the cells. She is in a sad mood today. She says that is because she misses her sister. The good news is that she will get to see her on Saturday. On Saturday a group called Chandler's Tree Farm will be coming in to bring presents to the kids on the BMT unit and their siblings. (The rumor is that Santa is coming too!) For the four hours that they are here, the hospital is allowing siblings to come up. Please pray that Katie feels better soon. Thank you for all of your prayers and kind words.

**Also please pray for the Connor Family. Great-Grandpa's brother, Uncle Pie, died last night. It is a hard time for great-grandpa especially since Uncle Pie was Great-Grandpa's last living sibling.

BMT Day 7

Today has been pretty quiet. Katie has not felt well today and has had a couple of doses of anti-nausea medicine today. Tonight, after a little medicine and another nap, she felt up to playing. She loves playing with her little Polly Pocket "Cinderella".

The conversation goes like this:
Mom: Why do you put clothes on Cinderella if you are going to just take them off again?
Katie: Cause that is what you are suppose to do! Agggh...I can't get it on by myself *scream*
**Changing the clothes for Polly Pocket is somewhat challenging for my almost 4 year old.**

Now she is doing some crafts that the Radio Lollipop brought her. Oh the joys of glitter! Lucky for us we have figured out that the little pink buckets are for more than just throwing up in. An extra one can be used for glitter application!

**She should get her stem cells about 10 a.m. tomorrow. Please pray all goes smoothly.

Thanksgiving

This post is a little late...sorry...but on Thanksgiving I was not in the mood to feel thankful...

I am thankful for:
1. My loving God. He has a plan far above what I can see. This past year has been very hard but I know there is a purpose in it. I have to admit that most of the time I feel far away from God but I know that is my fault not his. My constant prayer is that I find a way to do better & grow closer to him (read the bible, witness, pray, etc)

2. My church family. Our church is wonderful. I know that I can call them at any point of the day and they will be there to listen and help. It is there that my daughter (Katie) is learning so much about God and I am thankful for her teachers.

3. My husband. I am so thankful for how much he helps me make it through this adult life. I don't know what I would do without him. He helps so much with the girls and makes me laugh like no one else.

4. My children. I have the best daughters in the world. They are different as two sisters can be, yet they are the same in that they are loving and a so much fun to be around.

5. My girl's daycare: I am so blessed that my girls go to Grannie's and Pawpaw's. I know that when they are there that they are taken of. Really they are more like our extended family.

6. My family. I have parents and a sister who love me & my girls & husband. I know that if I need them they will be there. My in-laws. I am very blessed to have married a man who has a great (and large) family. They are wonderful.

7. My friends. I have the best friends in the world. Even though I don't work with those of them from BVRC anymore I know that if I need them that they will be there. I know the best therapists in the world!

8. My job. I may not always like my job but I wouldn't trade the flexibility it provides for anything. I wouldn't have made it through this past 6 months or so without it.

9. My community. During this past couple of months everyone has really come to our aid. We wouldn't have made it without all of you.

BMT Day 6

Not much to report today. Katie hasn't felt very good today. She threw up several times but she did not require extra medication for it until tonight. She has the beginning of mouth ulcers but is still tolerating the mouth wash.

**On a side note: I read a really good novel by Linda Nichols. It is called In Search of Eden. It is a really good christian book.

Hope all of you had a wonderful day. Continue to pray for Katie to get better soon.

BMT Day 5

Today has been a fairly good day. Katie hasn't been eating much the past couple of days because of the nausea (due to the chemo) but today she did manage to eat a little bit & hold it down for a while. Laura Beth spent this past couple of days with my family & they brought her up to see us (and for William to take home with him today). We were able to sneak Katie out of the unit & let her hug & kiss her sister. (I say sneak because no one under 12 is allowed on the unit due to flu season & Katie is not suppose to leave the unit). Katie misses Laura Beth terribly, but of course after giving hugs & kisses she was ready to go back to her room. She enjoyed getting to see Nana & Aunt Ashley (Pop was coming down with a cold so he couldn't come see her). After William & Laura Beth left for home, Katie & I took a nap. We were definitely tired after last night....the IV pumps were beeping about every 10 minutes or so ALL NIGHT. But the good news is that when this chemo is done tonight, we are done with chemo! And the other good news is that week one for us is finished! Now on to week 2....Please continue to pray for her. This next week will prove to be a hard one. They tell me that her mouth ulcers will begin soon & that will be very painful. This chemo is very hard on the digestive system & causes it to be very irritated. It ranges from just uncomfortable to be put in the PICU to be intubated due to her throat closing up.

***Side note: If you have been following our blog very long, you know about Layla. She is on the BMT unit as well. She is about a week or so ahead of us in treatment. Please pray for her & her family. She has the mouth ulcers pretty bad & has had some difficulty with the narcotics. Her dad did say she was doing better when I talked to him yesterday. Her birthday was this past Thursday...she is now 2.

Craziness R Us

Today has been a little crazy. Katelyn's IV has been beeping NON-STOP...you never know how much you hate that sound until you can NOT shut it up! LOL And if that is not enough to drive you nuts, Katelyn has been in a very BAD mood...one minute she is happy and the next she is flying off the handle about one thing or another. She just is not feeling well today. She has eaten very little today and her counts are on their way down. She will probably need to get blood tomorrow. Please pray that she feels better soon.

BMT Day 2 & 3

Sorry that I haven't posted in a day or two but Katie had turned off my computer's wireless capability (without me knowing there even was a button for this on my computer)...Anyway I thought the Internet was down but then my wonderful, great, ingenious husband looked at the computer, found the button and now I have Internet again! (his words LOL). Now we are all in better moods than we were when we first got here. We had a good Thanksgiving day. Quiet but good. We even got to have Thanksgiving dinner provided by a local church. Katie has been hooked up to chemotherapy since about 8 p.m. on Wednesday night. She will finish up with chemotherapy late on Sunday night. So far, she hasn't had too many bad effects of the chemotherapy. We are so thankful for all of you and hope that all of you had a wonderful Thanksgiving. Keep praying that we will be home for Christmas.

BMT Day 1

Today Katie was admitted to the BMT (Bone Marrow Transplant) unit. We were told, today, that we may be here until December 30. There goes the idea that we will be home for Christmas...to be honest we are all not in a very good mood. We are trying hard, though, to remember that we do have ALOT to be thankful for. Laura Beth is staying with my parents the next couple of days while William is staying at the hospital with Katie and I. Happy Thanksgiving everyone.

Radiation Days 5 & 6 of 12

Yesterday I was so upset and tired by the time I got home that I thought it best to NOT blog! Being at Texas Children's Hospital for 7 hours can do that to you! First we had to wait an hour and half past our appointment time in order to get Katie's blood taken and see the doctor. Then, when I asked for the doctor to print our schedule I found out that we had TWO appointments that no had told me about...so we spent the day going back and forth between TCH, Methodist hospital, and the clinic at the Texas Children's cancer center. So I wasn't doing to good when we left. THEN a crazy man yelled at me when I was stopped at a stop sign! Apparently my car was in the cross walk and he didn't know how to walk around me! Good grief!

Today was some better. No surprise tests like yesterday. Katie did well with all the tests and we got back to the Ronald McDonald house in time to wash clothes before dinner...so all is good!

Weekend

Katie and I went home on Friday to be with William and Laura Beth. When we left both of us had the beginnings of a head cold. By Sunday (when we got back to Houston) ALL of us (William, Katie, Laura Beth and I) have the cold. Thankfully it is just a head cold and it will pass soon. We all have to be well by the time that Katie is put in the hospital for her last chemo...because NO ONE who is sick can visit her.
We had a good weekend, even though we all felt like our head was going to explode! We went to Nicholas' birthday party at the bowling alley. Katie had a blast and Laura Beth loved running around! This morning, Katie was chomping at the bit to get to Sunday School with Ms. Sharon and Ms. Joan. But now she is sleeping peacefully and we are gearing up for the week ahead. She has several tests scheduled along with radiation to get us ready to be placed on the bone marrow transplant floor sometime next week. Please pray for us as this is going to be the toughest on our family. Because I have a career that is more in demand (and because William is running low on sick/vacation time) I will be the one in the hospital with her for the month long stay (minimum is 21 days inpatient). Pray for my job as they fill my spot till January and pray that I still have a job to come back to. Also pray for Laura Beth as she will be unable to see Katie at all during this upcoming hospital stay...and she will see her mommy very little. She is such a trooper. But you can definitely tell she is jealous of Katie. If Katie gets in mommy's lap (or anyone else's for that matter) Laura Beth begins to cry and hit Katie to get her out of the way. It has truly been a difficult year BUT we are looking forward to a WONDERFUL 2010!

Radiation Day 4/12

Today went smoothly. Katie got through radiation without a hitch. And then we saw the radiation oncologist today. No new problems to report. She had a great day playing on the computer and trying to sneak around while she was suppose to be taking a nap (mom was reading a book). Then tonight we met my parents and sister for dinner. She had a blast!

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I have be negligent about putting pictures up on the blog so here are a bunch from the past month or so! (In no particular order)

My favorite 1 year pic of my little one


Katie getting tired during her first day of stem cell collection


Happy Katie getting her stem cells collected.

The bag in the middle (dark red)...that is the one that is holding the stem cells. And that is at the end of the day of collection. All that work for so little product! Good thing they are tiny (there are about 800,000 cells in there!)

Katie being a bull!

Katie at St. Jude's holding her picture she drew of me on a mag-na-doodle

Katie in front of her favorite fish tank at St. Jude's Hospital

Katie throwing pennies in the fountain.

Katie in front of the fountain at the Methodist Hospital.

My happy girls in their matching pumpkin outfits.

Laura Beth after her first haircut courtesy of Uncle Nap

Laura Beth getting her first haircut. She was so confused! She could NOT find her hands to get to the candy Uncle Nap had given her! LOL


Katie with her present for being so good at radiation!


Katie all dressed up as a Dora Fairy for Halloween (thank you Erica!) Even though she didn't get to go out and trick or treat she still liked the costume!


Notice the hair & the shoes (thanks to Aunt Marian)

Katie sporting her new hat at TCH in the lobby in front of a big wooden giraffe

Katie in her new outfit (cupcakes) from Aunt Marian

Our Halloween pumpkin

Laura Beth & Grandpa on the motorcycle

Katie (aka my little dandelion fluff) blowing the fluff off a dandelion!

Katie and her best friend Kate

This is the best picture! It shows a face she does quite often.

Happiness written all over her face!

The following are the pictures from last night....

Opening act

Aladdin

Army men from Toy Story

It's a Small World

Another one from It's a Small World

From Pinnocio: Notice the man on the unicycle!

From Beauty and the Beast

Mickey and Minnie

From the Lion King (Katie's favorite!)

Nala from the Lion King

From the ending act

More from the ending

The Snow Cone that Katie HAD to have!

And her enjoying the snow cone

Radiation Day 3/12

Today is going pretty smoothly. Katie had her third radiation appointment and did great as usual. Then we came back to the room and have been doing chores (calling hospitals about bills, changing doctor's appointments, washing clothes, etc.) After I put our clothes in the dryer we are going to go enjoy ourselves some Chinese food and then take a little nap before we head to the Disney on Ice with the Ronald McDonald House. Katie is excited to be able to see the characters from Lion King and the princesses. We are praising God for such a wonderful BEAUTIFUL day! Go out and enjoy it!

Radiation Day 2/12

Today was a little frustrating! They told us yesterday that Katie needed blood but they didn't have room for her so we were to come back today at 8:45. We arrived at the doctor's office a little after 8. By 9 they had moved us three times and still had not started the blood. The officially started giving her blood at 10:45!!!! And that is WITHOUT pre-medication. Geez! But Methodist hospital was kind and worked around TCH. Katie received radiation about 1. Then it was back to the Ronald McDonald house for a little nap. AND I signed us up for Disney on Ice tomorrow! Thank you for keeping us in your prayers and sending encouraging messages. They help alot! Also thank you to everyone who has given blood. Today Katie received blood from a designated donor. We appreciate your sacrifice (those needles are BIG!)

Radiation Day 1 of 12

Today was Katie's first official day of radiation. We arrived 10 minutes late for our 8:45 appointment (even though we left the house at SIX). Katie did wonderful! She had to lay perfectly still without ANYONE in the room or anyone talking to her for about 30 minutes. I was able to watch her from a t.v. in a separate area with the radiation technicians. She looked a little scared but did GREAT. She didn't move a muscle the whole time. Even with things moving around and making noise. The doctor said that she is the youngest patient who has been able to do radiation WITHOUT sedation. For a surprise I got her a leapster (that way she will have something educational to do while she is doing all this waiting for doctors and procedures. We are now waiting to see if they can do a blood transfusion today. If not, we will get it tomorrow before radiation. Thank you all for your prayers and support. Please pray that we will not run into any glitches. If all goes well we WILL be done the Tuesday before Thanksgiving! It would be so good to be home for this.

Radiation

Yesterday, Katie & I went for her first radiation appointment at Methodist hosptial in Houston. At this appointment she did not receive radiation but they did something called a simulation. They took CT scans and marked her so that they would know where to do the radiation. We thought regular radiation would start the next day. (I had taken off work and reserved a room and the Ronald McDonald House). However, we learned that radiation will begin on Monday 11/9/09 **SURPRISE** Other than being really frustrated...I was happy becuase Katie did very well. She laid perfectly still for the whole time and she didn't get upset that I could not be in the room with her the whole time. I could tell she was nervous and a little scared but a stranger would not have known. I was so proud of my little girl! She will have 12 radiation appointments that last about 20 minutes each day (excluding weekends). Hopefully we will be done the Tues before Thanksgiving. Though this year has been really hard, we do have a lot to be thankful for. Again thank all of you for your prayers and support.

Finished

Today was not that bad until the end. Katie watched t.v., painted, and read books during the procedure. A long boring day for William & I. They collected 2.3 million stem cells (more than enough). Then they came and pulled out the line. This was a long process (took about an hour total) and was VERY painful for Katie. It took me, William, two nurses & two doctors to get it done. BUT we made it through it okay. We will begin radiation on Wednesday. Thank you for all of your prayers and please continue to pray for Katie's health (both mental & physical).

Stem Cell Harvest Day 2

We arrived at TCH at 7:30 to find that they had NOT gotten anything ready BECAUSE they did NOT know if we really were coming...even though they called me 3 or 4 times yesterday to confirm that we were indeed coming. Everything did not get started till after 9. As of right now (1:30 p.m.) they have finished the stem cell collection today. We should know if we have to come back tomorrow or not about 3 this afternoon.

Now time for my soap box..... While walking back to the hospital from picking up lunch I saw a well built guy sitting outside one of the restaurants. He was wearing running shorts, expensive looking sun glasses, and listening to his ipod. You could tell that he obviously goes to the gym to work out. AND he had the nerve to ask if I could buy him a sandwich!!!!! GET SOME PRIDE!!! I was so annoyed. **Okay now I feel better**

Good news.....Not so good news

Hello again to everyone. Today was the day Katie was to have her stem cell collection. The procedure went well, it lasted about three and half hours once they actually got started. The collection was so easy in fact that Katie slept through most of it. The only bad thing about it is that it is VERY boring. The not so good news is, that they did not get enough cells this round. They are going to collect again tomorrow morning in hopes of getting the rest of what they need. The magic number is 2,000,000. Right now they only have about 800,000. If they don't get enough cells tomorrow they will have to try again Monday. Please pray that we get the rest tomorrow because the catheter is uncomfortable for Katie, and she is having a little trouble walking. Katie is in a GREAT mood and is in rare form despite everything she has gone through the past couple of days. William is going home tomorrow because he has to go back to work. Karla is coming to get him in the morning and she is bringing the baby for us to see. Please continue for her counts to be where they need to be in the morning. Thank you all so much for everything.

The Exorcisim

Hello everybody, as we told you earlier Katie had a catheter put in her right leg so they can collect her stem cells in the morning. The procedure itself went very well. Katie even let the nurse her take away from us without any problem so they could get her ready. So we were excited about that. The procedure took about an hour or so total. The nurse then came and got us from the waiting room to take us to her and that's when it happened...... our sweet Katie was apparently possessed by some kind of demon that we have never seen before and hope we never see again. We thought we were gonna have to have an exorcism right there in the recovery room. Katie had the worst reaction to the anesthesia that we have ever seen. Katie told us that she didn't want us there, and she threw her blanket away and for those of you who know her know how much she loves her blanket. The recovery room nurse was very patient with her and was trying to keep her calm so she would'nt hurt herself and her new catheter. Katie was kicking and screaming bloody murder for about an hour straight, she hit her head on the bed railing and was kicking and flaling about. They finally gave her something to help calm her down, which helped some. Finally the demon left her body and she is back to normal. Katie is however pretty sore but in good spirits. We are staying in a hotel in Houston. We all came to the hotel and took a much needed nap. We have to be back at the hospital at 7:00 A.M. tomorrow. Thank you all so much for your prayers and support through all of this.

Update...

Katie is having the catheter put in to collect stem cells today. Tomorrow (and possibly Sunday) they will collect the stem cells. She will be sore and not want to run around much. We plan on laying around the hotel room and watching t.v. She will begin radiation on Wednesday (November 4).

These are the Days of our Lives...

Yesterday, Katie and I headed to Houston to get her blood drawn to test for her stem cell level. She was NOT yet at the right level, so they sent us home. We made it back into town in time to go with William to the doctor. The kids stayed at great-grandma & great-grandpa's house while we went to see the doctor. (Great-grandma made homemade chicken and dumplings MMMM) Dr. Veazey said that he thought William had a herniated or blown disc in his cervical spine (neck), so he sent him to get an MRI. Today, the doctor's office called to say that he does NOT have a herniated or blown disc but instead does have degenerative disc disease (kinda like arthritis in the spine). They have referred him to another doctor to get a shot. Right now he is doing well on pain medicine (aka vica-friend!!!!) Tomorrow, we are heading BACK to Houston for the THIRD time this week. They are prepared to give Katie blood and platelets tomorrow. Hopefully her blood levels will be at the right level and she can have her stem cells collected.

Update

Sorry that I have not written in about a week...William hurt his shoulder/neck/arm on Monday (Oct 19th) and has been in a lot of pain. I even had to take him to the ER on Thursday morning. They said that he had a strain in his shoulder and sent him home with a referral to an orthopedic doctor and some pain pills. So he has been pretty much out of commission this week. Laura Beth has had a cold. The doctor says it is just a virus..she has lots of drainage and I am sure she has a headache from it all. And she has two teeth that have come through this week as well! On the brighter side, she has really taken off with her walking!! She is going to be running before I know it. Katie has been doing pretty good. Nothing new really to report there. She had to get blood on Tuesday (Oct 20th) and platelets on Friday (Oct 23rd). Today we came to Houston for a radiation oncology appointment and a bone marrow transplant appointment. We got up extra early and got everything in the car and headed out. It was pouring rain and to say the least it was NOT a fun drive for mom. Katie slept all the way though. Thank goodness that we didn't get into too much traffic along the way. We made it to the radiation oncology appointment on time and got to see him in order to get things set up to begin radiation after stem cell collection (hopefully next week). We then headed over to TCH (radiation is at the Methodist Hospital next door). After taking her blood to run tests, they came back and stated that she was not ready for stem cell collection yet. AND that she needs to get blood and platelets today. They are running another test to determine when we might be ready for stem cell collection...stay tuned!!!

Change of Plans =)

Katie's hemoglobin was low so we made a run to TCH today to get a blood transfusion. Hopefully the rest of the week will be uneventful. We have an appointment on Monday with the radiation oncologist and the bone marrow transplant people. If Katie's blood levels are at the right amount, on Tuesday, she will have a phoresis catheter (central line in her hip) to have the stem cells extracted. Hopefully it will only take one day to do the extraction and then they can remove the phoresis catheter.

Yesterday we had a pretty good day (well most of it). Laura Beth had a 15 month checkup. Katie stayed with great-grandma while I took Laura Beth to the doctor. Katie had a GREAT time playing with great-grandma. Laura Beth got 3 shots and was very cranky all day (rightfully so!) Katie and I played candy land and memory when we got home and lounged around while Laura Beth napped. Well, that is about all the news for now.

Chemotherapy Day 3

Katie continues to do well with this round of chemotherapy...she has only been sick once (the first night). William and Katie are enjoying their stay with Aunt Marian and are having a blast.

William reported that he saw Layla again and that she started radiation yesterday.

William reported that last night after they laid down to go to sleep that the following conversation occurred:
Katie: "Daddy aren't you going to say a prayer?"
William: "Sure. Do you want to pray too?"
Katie: "No"
William: prayed and then said, "Do you want to add anything?"
Katie: "Yes"
William: "What would you like to say?"
Katie: "I don't know."
William: "Well, what do you want from God? That is what you ask Him for."
Katie: "To get better."
William & Katie: "Dear God please make me (Katie) better. Amen"
Katie: "Okay...now let's go to sleep, I am tired"

***Also please keep William's grandfather (Steele Connor) in your prayers. We found out today that his bladder cancer has returned. They have scheduled him for surgery on November 11. We appreciate your prayers so much and Katie is living proof that God is STILL in the business of healing. Thank you all so much.

Chemotherapy Day 2

William, Katie and I met with Dr. Russell yesterday. She was amazed at the miracle that has happened in Katie. They have decided that they will do one round of outpatient chemotherapy this week and then they will harvest Katie's stem cells about seven to ten days later. After that Katie has radiation and stem cell transplant. Katie did well with the first 2 rounds of chemotherapy yesterday and today (takes about 4 hours in the clinic infusion room). She and William stayed at the Ronald McDonald house last night. Katie found joy in playing air hockey! She had to go to the bathroom often to urinate and threw up once. They are staying at William's aunt's house tonight. Katie is doing well and being spoiled rotten. They went to Cracker Barrel and Katie got a harmonica, bean baby, and a face magna-doodle. And of course she got to feed the fish with Aunt Marian. One of her favorite things to do. She is doing well and not feeling too sick today.

I went back to work today...yeah...It is always fun to come back to a mess of paperwork. But it is a nice break from all the medical things....

***Update: Laura Beth is WALKING!!!! She will only do it when she feels like it but I have seen her walk about 10 steps at a time.***

William said that he saw Layla in the infusion room today but did not get to talk to her mom. He stated that she looked good. Please continue to pray for her as well as us. Again thank your for all of your prayers and support. We love you all very much.

Rest...sweet Rest

Today did not start so great...I have to be honest here...Katie & I have been in very cranky moods =/ I should be so excited I can barely contain it BUT I think all the stress of the past 5 months has gotten to me. Katie woke me up this morning by whining & crying because daddy was not here for her to kiss bye (he left for work at 6 & it was 8 at that point)...then Dr. Russell's office did not answer (I figured that they were closed because of Columbus day...but found out later that they just weren't answering the phone, even though they should have been open for about 45 minutes at that time)...so I was a very unhappy woman. THEN Katie continued to whine & I began to yell. After a much needed cry in the shower & Katie talking to daddy on the phone we are all better. I NOW RESOLVE THAT TODAY WILL BE A GOOD DAY... ONE OF REST & FUN TIMES WITH THE GIRLS THAT I HAD PLANNED!!!!

Tomorrow we have an appointment at 8:55 to see Dr. Russell...then we will begin a 5 day regimen of outpatient chemotherapy, followed by stem cell collection which will take 3-4 days. Pray for peace and comfort...and for me to not lose my cool...

St. Jude's Day 5

Sorry that this entry is a bit late...I have been busy since Friday.

Friday was fast & crazy day. Katie had her MIBG scan at noon. This test takes one to two hours to complete. She has done it without sedation previously but we thought it best to let her be sedated for this one because it is very stressful for her & we wanted them to be able to get the best pictures. Because she was going to be sedated she could not have anything to eat until after the procedure. She could drink up until 10 a.m. Of course, when she can not eat she is very cranky. (Me too!) To make matters worse, when walking to the hospital from where we were staying it began to rain...and HARD. By the time we got to the hospital we were SOAKED. Luckily I was pushing her in a wheelchair, so I ran like the dickens to get us there but we still got very wet. We found a warm blanket & in about an hour we were dry. We made it through our morning appointments & Katie played with a child life person for the hour we waited for the MIBG test to begin. After the test she was very cranky, unsteady on her feet & loopy from anesthesia & due to the stress I have been under, I did not respond in the best of ways...to say the least neither of us was very happy. THEN they had her scheduled to get her dressing changed. This is not the most comfortable thing for Katie & she was not happy about it. Afterwards we went to wait to talk to Dr. Navid. While waiting for that appointment, Dr. Russel called to 'try and clear up some confusion'. What she stated was the following: Because Katie did not get to the point where she showed No Evidence of Disease with the initial 5 rounds of chemotherapy (induction) the goal for treatment for her is no longer to 'cure' her but instead to 'maintain' her disease & to hopefully make it go away slowly. This upset me greatly...I cried for 75% of my conversation with her. Things changed (for the better), though once I got into talk with Dr. Navid. Dr. Navid stated that Katie had less than 1% disease in her bone marrow (previously 5%), no remarkable findings on her CT scan, and one spot of disease on her MIBG (which is lighter than her previous one). Because of this Katie does not qualify for the study...she does NOT have enough cancer in her to qualify for this study. I was in shock...from there I left to go & see when we could get a flight home (Dr. Russell wants us to see her on Tues to begin a round of chemotherapy & hopefully go to stem cell collection/bone marrow transplant after that). Transportation said that if I could get ready to leave in 30 minutes, I could fly out at 7. Luckily I had packed up that morning in hopes of getting admitted for the immunotherapy. I raced back to the room & put the last of our stuff in bags & was ready to go. The airport was confusing, Katie & I didn't have seats next to each other (luckily the man that Katie was going to sit beside switched seats with me), I hit my head on the overhead compartment, the ride was very bumpy, & we had difficulty finding Aunt Marian....BUT we made it home all in one piece! We stayed at Aunt Marian's house on Friday & William came to pick us up on Saturday. Katie has been very grumpy & whiny but we are very happy none the less. We praise GOD FOR THE HEALING HE HAS PERFORMED! Thank you for all of your prayers...they are working! Please continue to pray for 100% healing! And a big thank you to all of our church members who have done 24 hour prayer vigils for us. We love you all so much and thank God for our wonderful church home.

St. Jude's Hospital (Day 4)

Today has been pretty uneventful...which is a good thing. Katie got through her CT scan & her MIBG injection without too much difficulty (you have to take some oral sodium potassium drops with the injection that do not taste too good). Dr. Navid found us in the cafeteria eating breakfast & told me that Katie has tested positive on their screening blood work for Hepatitis B. We did more blood work today & will find out if she really has it or if she has just been exposed to it recently...we will meet with the infectious disease doctors tomorrow before our MIBG....probably got it from some of her blood transfusions (she has had 15+ transfusions since May). Not really a big deal, as far as I can tell, but just one more thing to put in the mix...GOOD GRIEF...LOL... Tomorrow Katie has the MIBG and then we will meet with Dr. Navid to discuss options again. I got a call from Dr. Russell (which I missed)...she was calling to try to clear up some things, as she had gotten e-mails from Dr. Kushner in NY and from Dr. Navid at St. Jude's... Anyway I will call her back tomorrow....Please pray that all these tests come back with good news...Katie has been complaining of headaches, leg, hip, and back pain the past couple of days...and of course this concerns me...but my prayer is that it is just related to all the tests & the stress of being so far away from home with a stressed out & crazy mom that sometimes has her OWN meltdowns... dang I wish I knew a good OT that could brush me! (little OT joke....) May God bless all of you for your kindness & outpouring of love for us.

St. Jude's Hospital (Day 3)

Today has been a little better. Katie had her bone marrow aspirations & biopsies today as well as her echocardiogram. She was asleep, of course, for the bone marrow procedure. Then while she was still asleep they did most of the echocardi0gram. By the time I got to her, she was just waking up and they were finishing her echo. We got her medication that she has to take before the CT scan and the MIBG scan, a line nurse changed her dressing, and met with the child life people. Katie and I even played Dora Scrabble Junior....she had a pretty good day. We have her CT scan tomorrow....they do things a little different than TCH...we have to give her the contrast 3 and 2 hours before the CT scan. So we will be getting up to drink stuff at 6:30 a.m. & 7:30 a.m. with the scan at 9:30 a.m. Thank you all for your wonderful messages and encouragement. I am doing better and an afternoon nap makes everything better =) We appreciate all of your outpourings of love.

St. Jude's Hospital (Day 2)

Well...today has not been as good as yesterday. We spent a lot of time sitting around and waiting and getting lost while trying to find appointments. Really nothing new in the world of hospitals. Of course we had to recount our life history to the doctors and Katie had to get examined twice (once by the nurse practitioner and once by the attending doctor)...and then there was the eye exam. This was Katie's first eye exam and she was happy to do it UNTIL they put the drops in her eyes to dilate them!!! But we made it through without too much trouble.....the hard part was when the doctor (who looked very depressed by the way) came in to talk with me. When asked what my goal was for this study, I of course said "To bring Katie to remission/no evidence of disease and get her to transplant." The doctor's response was "Then this is probably not the best study for you. This study does not have a goal of putting your child in remission but instead will give her an undetermined dose level of this antibody that will probably not be at a therapeutic level for her." I, of course, was very upset by this and was confused, as this is not what Dr. Russell had told me. William of course became very upset when told this...and to tell the truth after I got Katie set up with watching a movie I cried quite a bit. I even threw a fit, as Katie would say.... I am just very TIRED of people telling my child is GOING TO DIE.....Before coming here, William and I were sure that this is what God had in mind for us...but now we are rethinking that....but then I think, "what has changed??? God does not change his mind....it is us that change." I of course am very confused AGAIN....I know everyone who has a child with a catastrophic disease must feel this way... Anyway...pray for us to find out what God truly wants for Katie...and pray that we can accept His will if it is for her to leave this earth earlier than we had planned....and please pray your BUTT off that this is NOT his will because I do not think I could handle loosing my 'cuddlebug'...Thank you for your prayers and support.

AMAZING!!!!!!!!

Wow!!! I have been truly amazed since arriving at St. Jude's Research Hospital. They have thought of everything. They pay for your meals, your housing, and our airfare. And they are very nice to boot! LOL Our room at the Grizzly House (a Ronald McDonald House) looks like something a five star hotel would have! I am truly amazed. God has blessed us beyond measure. Thank you to all of you who have been giving us so much. Your prayers, kind words, love, and support have been invaluable. I was truly worried about traveling so far away from home with just me and Katie...but as God planned it, everything turned out fine. We made it to the airport and onto the plane without to much difficulty =) And Katie was pretty good during the flight and afterwards while finding our luggage and our transportation. She enjoys finding the car seat in the van to know where to sit! We arrived in Memphis a little before 6 and got to our room about 8:30 or 9 (we had to be registered, eat dinner, and get blood work and stuff done). Katie slept well and now we are ready for a full day!

Craziness!!!! It is a good thing!

This last week has been a little crazy. All the oncologists have been at a conference for the Children's Oncology Group in Dallas this week. When I say all oncologists I mean the ones from NY, St. Jude's, Cook's Children's, and TCH, among others I am sure...all the ones that I needed to talk with this week to make a decision about our next step. But of course God had a plan I did not know about. We had decided to do the 3F8 in New York. Once I finally got a hold of a doctor there, he stated that we should get 2 more rounds of high dose chemotherapy before beginning antibody treatment. Dr. Russell didn't agree with this, as she thinks it might cause more harm than necessary. While at the meeting she talked with some of the people from St. Jude's and found out about a study being done there. Once we agreed to this option the ball got rolling very quickly. Appointments begin for us at 9 in the morning on Tuesday October 6th. Katie and I should be flying out on Monday. (We will be there about 2 weeks). We do not yet have an airline ticket set up but St. Jude's should help us with that. The good thing about St. Jude's is that they do not have us pay co-pays. They will file with our insurance though. They also provide housing for free and help with meals. Please keep us in your prayers as this is a very stressful time...even more than previously if that is possible! Thank you for your continued support.