Confusion!!!

Here is a run down of what has happened thus far today.... CONFUSION

**We arrived at Texas Children's at 8:30 to get blood work done.

**We checked in at 8:45 (they were not doing valet at the time for reasons unknown to me! So we had to parked in the garage and walk over...not to mention we stopped for Funyuns for Katie)

**They called us back to the desk because they needed us at the Infusion room instead of the Lab (but the lady at the desk didn't know why when I asked.)

**The nurse came back and let me know that to decrease the times her line was accessed they wanted us to get blood work done at the bone marrow transplant (BMT) floor...off to the 8th floor..

**We waited there for about 45 minutes, while listening to a little boy crying his lungs out because they were poking him...the BMT lady came out and explained that they did NOT need to see us at the BMT floor today (we apparently have an appointment on Monday for the BMT that I was unaware of...)

**We went to check in for the bone scan injection...then went to the nuclear medicine floor and got our injection (45 minutes late).

**Went to the food court to get lunch...got a call to go back to the BMT floor to get the blood work done...

**Went to wait for our bone scan...thank goodness for the receptionist having markers and coloring pages to keep us busy...

**6 times in the elevator so far...which of course is really good for a child with a low immune system =0) This afternoon we still have to get our bone scan, echocardiogram, and audiogram...so basically we have been here for 4 hours and got blood work done... LOL ...such is the life at Texas Children's!!!

**Oh and I still haven't eaten lunch =0)

A Week of Tests....

Katie, Laura Beth, William, and I have had an okay weekend. I had to work all weekend to make up for days missed...and I had to work today since I will be missing Tues and Thursday this week. But all in all we have been doing good. Katie has been very emotional lately but when you take into account that she is a 3 1/2 year old girl, that is not to surprising.

Today we received a DVD of Lori's School of Dance recital. Katie loved watching all of "her girls" dancing to the songs. I was so happy that it didn't make her sad to watch them. Instead she was happy and said that she couldn't wait to get back to dance class with all of her friends! We are all looking forward to that day. Thank you, in advance, for keeping us in your prayers for this week and all of the trials we are facing.

Here are some more pictures of Laura Beth at one year. I can't believe how good they turned out...even if Laura Beth wasn't too keen on the idea. Erica did a great job!

This one is my favorite...such a cute little fairy!

And to think she looked like this just a year ago...my how they change!

Katie has been doing wonderful this week. She had fun with Nana, Pop and Aunt Ashley. She now tells people, "I'm not the sick Katie any more...the cancer is all gone!" I am praying to God that this is a very TRUE statement...and hoping she knows something I don't =)

Next week is going to be very stressful for all of us. We have tests all week. Tuesday holds the most (about 6 different tests). Please keep us in your prayers. Thank you for all of the help you have given us. You guys are wonderful.

Bone Marrow Biopsy/Aspiration

Today we had the bone marrow biopsy/aspiration. We got up at 4 this morning and left the house at 5. We arrived at TCH at about 7:30. We were surprised that we got taken back to get blood taken and see the nurse practitioner pretty quickly. Katie was in a great mood today. However, once it was time to go to the PACU and waited for 3 and half hours Katie was no longer in a good mood. It was a little stressful...but we did finally get back and everything went well. Katie was awake and had eaten half of her purple popsicle by the time we got back to see her in recovery. We made it home around 3 and Katie is doing okay. She is tired and emotional but doing okay. Please pray that it is clear

Home At Last

Just a quick note to let you know that Katie is doing really well. She has only thrown up once since being home. Other than the occasional nausea and incredible moodiness, she has been having a wonderful time. William's mother kept her on Tuesday and my parents and sister kept her today and will tomorrow as well. When asked if she had a good day, Katie replied "I had a great day with Nana and Ashley!" Please remember to keep her in your prayers...she goes for another bone marrow biopsy on Friday (9/5) and we are believing that this time it will be clear! Thank you all for your love and support through all of this.

A Meeting of the Minds...

After much discussion...both between the doctors and between the doctors/nurses/discharge people AND William...we should be able to go home about 2 this afternoon.

One Year Picture

The following is one of the "1 year pictures" of Laura Beth. Erica did a great job! Our little one is getting so big...

Appetite Burgler

Good Sunday morning to you all, I trust that you all had a wonderful night. Katie is doing okay this morning except she is feeling nauseated. She really wants to eat but she just cant make herself. She asked for a cup of noodles, so I made them for her, but the smell was too much for her to handle. She didn't throw up but she did gag a little. Katie slept pretty well last night, I however did not. Between her having to go to the bathroom and the medicine machines seemingly going off every five minutes it was a restless night. Christa is coming today! Praise God!! I don't know how she did this by herself all these times. She is a very strong woman and a great mother to her children. I thank God for her. She has sacrificed a lot through all of this and deserves a lot of credit for getting Katie were she is. I don't tell her enough but I think she is doing a great job taking care of Katie. I love her more now than I ever have. Please continue to pray for all of us but especially for Katie. That's all I have to say for now. Thanks again for everything.

update

Hey everyone I just wanted to let you know that the chemo started at 1:00 pm. So far so good on the upset stomach. Katie is still eating good and seems to be feeling good. We took a walk around the ninth floor just a few minutes ago to see if the playroom was open, but it was not. It was still good to get out of the room and move around some. We are back in the room waiting on visitors Nana, Pop, and Ashley. The chemo will be ending around 7:30 pm. Thanks again to all of you for everything. Gods power because of your prayers on Katies behalf has made all this progress a reality instead of a hope. I know faith is believing in things not seen, but if you new how bad Katie was then and how good she is now you might think of faith as believing because of what you have seen. Katies recovery from this bacterial infection IS proof that God does exist and that God is in control and always will be. I hope all of you have a great night and may God bless you.

Good morning...no...Great morning

Hello everyone I hope you all had a great night sleep, Katie and I did. Katie woke up about 6:30 this morning wanting to watch TV. Katie is feeling great and is in a WONDERFUL mood this morning. Katie will start chemo sometime today, hopefully this morning. Pray that this round of chemo will clear her bone marrow of cancer so that we can get on with this whole process and get Katie well. We are still scheduled to go home on Monday and are counting down the days. It has only been 11 days but it feels like forever. Katie misses her new big girl bed that we bought her. Her appetite is definitely back she is eating like horse, I hope the chemo doesn't change that. That's all the news I have right now. I hope you all have a blessed day. Remember never take one day with your family for granted because you never know when your family life will be changed. There are lots of things that you can get back but time is not one of them, so slow down and spend time with your kids and spouse and enjoy life.

no more one armed bandit!

Katie has now gotten her IVs pulled out and can use both her arms. She did not like it when the nurse pulled the tape off. She is happy that the IV is gone and that she can use both her hands. I told Christa that she would have been so proud of her daughter, because she was learning how to adapt to not being able to use her left hand. The reason I say that is because Christa is an OT and OTs teach people how to adapt to life when something such as a limb has been taken away. Thanks again for all the prayers and calls. Continue to pray for Katie and for Christa, Laura Beth and I.

New line

Katie is out of surgery, and her new line was successfully put in. Katie is in her room eating, watching TV and doing well. We hope that the IVs in her arm can be removed today because it is really aggravating her. She woke up from surgery pretty grouchy because she was hungry and because she woke up before I got there. The nurses did not have to show me where she was, I just followed her screaming voice. The doctor that did her surgery today was the same one that removed her cancer, so I am confident he did a great job. Christa and I thank you all so much for everything that you have done. Please continue to pray for Katie's health and for her complete healing here on this Earth. I also ask that you pray for me to have patience with these people and that I don't loose my temper with them.

Appetite Return...

Katie has had a good time with her daddy today. They took a nice morning nap and now Katie is eating like there is no tomorrow. She is quickly running out of her stash of Taco Bell burritos! LOL Thank you to everyone who has prayed for us. We can definitely feel the prayers. To God be the glory for everything He has brought us through and for the miracle we are believing in (Katie to be healed).

**Katie is scheduled for surgery tomorrow to put her central line back in and then chemo will be on Saturday and Sunday.

Good Times...NO...Great Times

Today has been WONDERFUL. Katie spent the morning laying in bed watching PBS, and singing to herself/her toys. And I got a little bit of a nap. This afternoon, Katie and I went for a walk up to the 16th floor to do laundry and play in the library. Katie had fun putting puzzles together in the library. She saw another little boy and commented that he had an IV too. Then she proceeded to tell him about her IVs and how a central line was better. Then the two of them showed their battle scars (he had had heart surgery). It was so much fun to see her talking to another kid, laughing, and having fun. Now...as soon as the nurse brings us a bucket we are going to do a craft...did I mention with glitter! LOL The glitter strikes again! Those blasted Radio Lollipop people... =) But to tell the truth we have a lot of fun with glitter....and pink buckets make it manageable. William will be here tonight so the posts for the rest of the week will be from him. Pray that he doesn't cause too much raucous while he is here...he isn't as polite as I am **wink**

Quiet

Today has been pretty good. We didn't have too many interruptions during the night and we slept well. Katie's cultures continue to be negative. They are planning to put the central line back in on Thursday. Then they can do chemotherapy on Friday and Saturday. Hopefully we can go home on Sunday or Monday. She doesn't have to have any more 'pokies' right now. Katie of course is happy about that. She is also excited to get to see her daddy tomorrow. He is going to take my place for a couple of days. Katie can have daddy time and Laura Beth can have some much needed mommy time. It should be good for all. Of course I will miss my little spitfire but I know she is in good hands.

Good Morning

Today has been going pretty smoothly...I am surprised to say I did not realize it is almost 10:30 until now...LOL. I almost killed me some residents this morning. First one came in about 4 to find out if they took out her central line (DO YOU READ CHARTS????) and then one came in about 6 or so to examine her and left the light on when she left....But all in all we are doing okay. Katie had to get blood drawn and she was not too excited about that....but it was quick and she didn't cry much. Thank you all for your prayers...William went home yesterday to go to work and I will probably go home on Thursday while he stays up here for a couple of days so that I can work (he is off from work on Thursday and Friday)....maybe no one will get killed while he is here by himself...who knows =)

Ninth Floor...Hooray

Katie had surgery to remove her central line at about 1:15 (only 3 hours after they said it would take place.) She now has two IVs in her left arm. We should be here until AT LEAST September 1. We are now on the ninth floor (room 934).

Update

Katie is suppose to have surgery about 10 this morning to remove the central line. After that we should be able to go to a room on the ninth floor (there are 5 empty rooms up there!) Please pray that everything goes well. They will put in another IV while she is under so that she won't feel it when they put it in. Thank you.

Hmmmm....

Well we now have a name...the bacteria is called Acinetobacter Baumanni. Apparently is relatively resistant to most antibiotics. The infection control doctors are suppose to come by later today. That is about all I know. The woman that they sent in to tell us what the bacteria was called didn't know anything but the name... We have had a good day. William's parents came by today with the baby. The hospital was not sure about having Laura Beth go back to see her sister. BUT after some firm words from William, she did indeed get to see her. Laura Beth brightened right up when she saw Katie and began to jabber away. Katie was getting tired by this time so she wasn't much for conversation but I know she enjoyed seeing Laura Beth as much as I did. I will let you know more as I get updates from the doctors. Thank you again for your prayers and generosity. One of the biggest good things that has come out of this whole ordeal is truly seeing God's love and generosity come through all of you. May God bless all of you 100 fold for all of your kindness.

Progress....

Katie is now off of ALL the blood pressure medications and is holding her own. She doesn't have a fever and hasn't had one for a while. Her culture from yesterday is still negative. We will be in the PICU for at least 24 hours after she came off of the blood pressure medications. (Please pray a room becomes available on the NINTH floor when we are cleared to go). They do not think, at this time, that they will have to take out her central line. BUT if they do, they will remove the central line and then THREE days later put a new one in. They stated that if she requires IV antibiotics we will be here for 2 weeks from yesterday! Please continue to keep us in your prayers. Thanks...

Prayers Work

Just a quick note...Your prayers worked; We just got a call that we now have a room at the Ronald McDonald House. They have gone down on the dopamine (she is now at half where she was when she started.) She is feeling better. Katie has been sitting up and putting together a puzzle with her daddy and now she is whining because I am typing and she wants to play a computer game. AND she is saying she misses her sister...this is good news since it usually the dog she misses first! LOL...thank you for your supportive calls and prayers...a special thanks to Donna Shannon's daughter who offered us a hotel room. You guys are great.

Frustration and YELLING

Well Katie is doing better. But William and I are not...we did not get a room for the Ronald McDonald House tonight. William hasn't take a shower today and did not get a nap...so to say the least there was some yelling. The lady at the desk said that if you get a room the night before that you are put at the bottom of the list for getting a room the next night. BUT she did say she will check with them at 10 to see if someone cancelled or did not pick up their key and then we might get a room. We are the only one on the waiting list right now for a room from the PICU. Please pray we get a room...though we don't deserve one I am sure after the way I just acted....but when we are tired or upset WE are NOT nice people...

Some good news

We got a little bit of good news today. Katie's cultures that they took today came back negative for growth. The doctor said we need to have three negative cultures in a row to be completely out of the woods. Katie has been cleared to eat if she wants to (but she does NOT want to eat right now because she is scared to throw up again). The central line will probably not have to be changed. Katie is completely off one of the blood pressure medications (norepinephrine), and they are working on getting her off of the other one. Katie is doing pretty well considering everything she has gone through. Christa and I were able to get some sleep last night. The Ronald McDonald house and all who volunteer there are true blessing from God. Thank you to all of you for everything you have done for our family. Please continue to pray for Katie as well Laura Beth. Laura Beth is not sick but she has been tossed around a lot. I am sure she feels like we have orphaned her. Just pray she understands that we love her and wish we could be there with her.

PICU Update #2

Katie made it through the night okay. They have turned down the blood pressure medication twice now. This means that her body is trying to do it on its own. Her heart rate has come down to about normal. She continues to need oxygen but is doing okay. She is cranky and that is a good sign! It means she is ready to 'blow this pop stand'

PICU Update

They have told us that one of the cultures that they took grew a gram negative cocci/bacillus. They believe that her central line is where the bacteria started. Gram negative cocci/bacillus hits hard and fast and is hard to treat. They are treating Katie with heavy duty antibiotics and will continue to take cultures daily. Her vitals have stabilized with medication. They have told us we will be here atleast a week. Thank you for your prayers.

Déjà vu

First, I would like to say thank you to all of you who are praying for us. It means the world to me and William. Next, I would like to update you. Katie is in PICU room 29 (same one we had about a month and a half ago when we had surgery!) She has been given TONS of fluids (saline, red blood cells, platelets, plasma, etc.). She is on dopamine and epinephrine to stabilize her blood pressure. They had to start an IV (twice) and an arterial line to give them more ways to access her to give fluids and to monitor blood pressure. They have also started her on antibiotics as they think that this is the result of some kind of bacteria. They have run just about every test imaginable at least twice...still they have no answers BUT she is stable at the moment (Heart rate is now 138 (normal is about 100); Oxygen saturation on room air is 95% and her blood pressure is about 100/48 which is about normal for her). They have told us we will probably be at TCH about a week...who knows if we get stable in time for chemo we might not even get to leave before starting the fifth round! Yea...go us :/ Hopefully we will not have to be in PICU a week...we might go crazy...correction we would have to go backward to be able to get back to crazy!!! We have already passed it twice... LOL Thank you for all of your prayers.

PRAY

Yesterday was a great day...It started off rocky but we had a good time at St. Joesph's hospital getting blood and platelets. William and I both went, so I was able to sneak away to see some of my friends from BVRC. It was a very needed respite. Today, however, has not been so great. Katie had a great day at grandma's today. But at 9:30 tonight she woke up throwing up. Her fever quickly spiked to almost 103. So off to Houston we go. We got here about midnight or so. Her blood pressure has dropped pretty low and her heart rate is high. Several of her blood chemicals are outa whack. They have now admitted us to PICU. I will update as I can.

Roller Coaster

Today has been a crazy roller coaster of emotions...scared, happy, upset, and downright broken. I found out this morning that Katie's platelets and hemoglobin had dropped significantly and that she required a transfusion of both. Thankfully aunt Karla and grandma were able to take her into Bryan to the hospital to get a sample of her blood to be typed and cross matched. (That way neither William or I had to take off work.) Then I got a call that the preliminary results of the bone marrow biopsy/scan show that Katie still has cancer in her bone marrow. This, of course, is very upsetting. We will get more definite results later in the week. We should go for Katie's 5th round of chemotherapy sometime around the first week of September. After I finished work I got a call that it would be at least 8 before the blood and platelets would be in Bryan....and then about 8 I got a call that they would not be there until after 11 tonight. So...we are going to go to Bryan early in the morning and get the process started...please pray for Katie, as she has a very low immune system, is anemic, and of course bruises very easily right now (and she is at risk for internal bleeding). Thank you for your prayers...they are what we hold onto right now.

Hello God...it is me margret... (a teen book title that reminds me of my life LOL)

Today has been one glorious roller coaster. I have to be honest and say that I was not a nice person today. We arrived at the clinical care center at 7:30 (10 minutes before our appointment time). When we got there we let the share desk know that we had an appointment with the radiation oncologist down the street at 9. The receptionist laughed and said 'there is no way you can make that appointment. Just because you have an 8 o'clock with the lab does not mean that you will get in at 8.' Of course our response is 'why do you even make appointments if you can't keep them and are already behind at EIGHT in the MORNING?' Of course they did not have an answer BUT we did get taken back fairly quickly. By the time we got to see the nurse practitioner it was about 8:30. When she walked in, her first statement was "Don't worry about the radiation oncologist, I already called and cancelled your appointment." Apparently, even though Dr. Russell referred us there (without letting us know) and they made the appointment we did not YET need to see them...and the nurse practitioner did not feel that I could make that decision myself so she cancelled it for me. To say the least I wasn't too happy. After looking Katie over she cleared her to go get her bone marrow aspirate/biopsy completed. Her hemoglobin was 8.4 (they transfuse at 8 or below). I requested that we get transfused since we were already there AND we know it is going to keep going down. She agreed and we went to the waiting area for the bone marrow procedure. THEN she called my cell phone and said that "we decided it would be best if we waited to see if her counts come up on their own and if not then you can transfuse on Monday." Of course she added that they didn't have room to do a blood transfusion anyway. So this of course added to my frustration. We were taken back about 10:30 or so and Katie got her bone marrow procedure completed (by the way we were the FIRST to have the procedure done even though they open at 9 and it was 10:30 AND this is the best they had done all week in starting EARLY according to the nurse that took us back.) Everything went well with the procedure and Katie woke up fine. We are now home and hope to be until at least Tuesday.

Thank you for listening to all my ranting and raving...please pray that Katie's marrow is clear.

Today...

I'm sorry that I have not posted in a while...I do not have internet at home...and I was so excited to go home on Sunday that I forgot to post about going home. We came home on Sunday August 9th. Katie has been doing good since coming home. She continues to be tired and lose some weight but that is to be expected. Today she is having a bone marrow biopsy/aspiration completed. Our prayer is that her bone marrow is CLEAR! We were suppose to see the radiation oncologist BUT they changed that because even though we had an appointment for the bone marrow at 1:30 they said that it is first come first serve...who knows around here...Katie's hemoglobin was just above the level to transfuse but we have opted to get her a blood transfusion today so that maybe her energy level will go back up and we will not have to mess with it this weekend. Thank you for all of your prayers.

Day before going HOME

Today has been a good day. Katie woke up about 9 and played educational games on the computer for about 2-3 hours while I took a morning nap. William came today and brought dumplings! (Thank you to Jan Moore...they are GOOD) We played in the playroom for a while and then Katie rode in a pink car back to the room. She has thrown up once today but hopefully the medicine will help that. They just started her last dose of chemo before we get to go home.

Another Good Day

Today has been pretty good. Katie has been kinda puny...and has thrown up a couple of times. But all in all it has been an okay day. She continues to eat some even though she is nauseous. To her father's credit she did eat about half a small container of bean dip with Frito's! Please continue to pray for her bone marrow to be clear when we go in for a bone marrow biopsy/aspiration on August 14th.

***Also please pray for a little boy, Leonard, who is currently in at Texas Children's Hospital for a lung infection (he has cystic fibrosis). Like us, he has to be in the hospital frequently...and as we all know that is not fun for him or his mom. Please pray for peace for his mom and healing for Leonard. Thanks ***

Bible Verse for Today:
1 Thessalonians 5:16-18 (New International Version)
"Be joyful always; pray continually; give thanks in all circumstances, for this is God's will for you in Christ Jesus."

Quiet Times

Today has been pretty good. No huge meltdowns...only small minor ones. Katie had alot of fun today playing on the computer for about 2 hours (thank goodness for working internet service), Nana came by for a while, we did NOT have any allergic reaction to the chemo today, and she got to paint with one of the "Child Life" people. Now she is sleeping peacefully while the 6 hour chemo is going. All in all a good day. Thank you for all of your prayers and well wishes. We love you guys. =)

Day 3 of Round 4

Sorry that I have not posted in a little bit BUT our internet has been down here at the hospital. Katie and I are doing really good. Since they took the dexamethasone off of her plan of care she has NOT had any more episodes of screaming. She did well with the first round of IV etoposide (no anaphalatic shock or cardiac arrest...that is always good!) Katie has not even thrown up yet (knock on wood)...thank you for all of your prayers and love. We really appreciate them.

Good Morning

We made it through the night okay...once we calmed down. After about 30 minutes she fell asleep. BUT then the phone rang and she woke up and screamed even worse for about an hour or so. In addition to her meltdown, she was seeing things move that were not moving, and scratching her nose like crazy. When the entourage of doctors come in today I am going to get them to remove dexamethasone from Katie's plan of care! Anyway, we are doing good this morning and hope to continue to do so. Thank you for your prayers. They helped me to not kill my child last night...literally.

WOW...

We were having a really good day. Katie and I have colored pictures, watched TV, played 'go fish', watched a puppet show, made a puppet, and made an elephant with glitter. And all of that is just since William left and they began the chemotherapy. BUT you notice I said we were having a good day. Right now I am listening to her scream at the TOP of her lungs in what I would call a FULL FLEDGE COMPLETE BREAKDOWN MELTDOWN...and this has been going on for about 30 minutes. She is tired (got up at 5 and has not had a nap), upset because we are back at the hospital, and the dexamethasone (steroid that is suppose to help with the nausea that the chemotherapy causes) is really working on her! But good gracious....please pray for peace and a good night's rest. Thanks.

And we are OFF...

We have gotten into the room. =) William has left to go home in hopes of missing some of the traffic. And they have now begun her chemotherapy. She will get it from 4:30 to 10:30 tonight. Tomorrow she will get the etoposide from 3:30-4:30 and then the cisplatin from 4:30-10:30. Right now she is very tired...I have put in Lion King 2 and she is laying down in her bed to watch it. Hopefully she can get some rest and stop being so cranky. =/

***Also please keep little Layla in your prayers. She is also in the hospital. However, she is having some problems with water retention.

Better Days Ahead

Yesterday was a perfectly AWFUL day. Work stunk...I washed my cell phone and keys (ruined the cell phone), found out sonic where I get my daily coffee will no longer be serving lattes, washed a pen in with my favorite jacket and got an ink stain on it...to say the least it was an awful day...BUT today has been much better. We found out that Katie has met the criteria to have the etoposide (oral chemotherapy medicine) through her IV. That helps ALOT because she hates to take it by mouth. And we are going to get a room (908) this afternoon. They are cleaning it now. This in itself is amazing since it usually takes about 12 hours after we see the oncologist to get a room (that would have made it about 11 tonight). Anyway thank you for all of your prayers. Katie and I will be here until Sunday. William and Laura Beth will be at home and come pick us up when it is time to go. The oncologist reports that IV etopside is harder, as far as side effects, than previous chemotherapies. So please keep Katie in your prayers for good health. And pray that her bone marrow is clear when it gets tested again on Friday August 14th.

Birthday Party..

Today we had Laura Beth's birthday party. She had a blast with the cake! Not like Katie when she turned a year old...you had to practically smear it on Katie for her to get dirty. But Laura Beth dug right in! In fact she had to have TWO baths today and really needed a third. Katie loved getting to make the birthday cake. She picked out a strawberry cake with sprinkles on the icing. She was able to walk down to grandma's all by herself to get some applesauce for the cake, and was so proud of herself. For the most part the girls were in a good mood. Laura Beth even walked using the stroller/walker my parents got her. She loved it! The girls were tired though and got cranky really fast. I think Laura Beth is teething and Katie just gets tired easily (and neither got their nap out). But all in all we had a great day with family.

Life as usual

Sorry that I have not written for a while but the internet at home does not always work. On Wednesday Katie had a blood transfusion in Bryan. It wasn't really that bad...just VERY time consuming. She has been feeling a lot better the past couple of days. She is back to her old chatter box self. It is so good to hear her 'rattle' 24/7. So things are going along pretty good...fast and furious but okay. Thank you for all of your prayers. We will go back to Texas Children's on Tuesday August 4th.

Another Day of Waiting

Yesterday, Katie had a platelet count of 7. Normal for platelets is 130 to 400. Because of this critical value, Katie required a platelet transfusion. We were able to do it in Bryan BUT even though William got Katie to Bryan a little after lunch time she did not receive a transfusion until about 9 last night and did not get home until about 11 at night. William was VERY frustrated and was I. But the good thing is that she got to spend some time with Great-Grandma and Great-Grandpa. Thank you for all of your prayers.

HOME

We made it home about 1 this afternoon. Katie is in a great mood and is eating better than I have seen her eat in weeks. We are so glad to be home. We have begun to notice that Katie's hair is falling out by the handfuls. She doesn't seemed bothered by it though. I cut out a lock of her hair to keep and you can't even tell it is gone. LOL... I think the hair loss is hitting me harder than it is her. We should be home for 10 more days. Thank you again for everything.

Going Home

The doctor came in this morning and said that nothing has grown on the cultures that they took. And since she has not had a fever since she was in the ER, she can go home today. They are completing the discharge paperwork now and hopefully we will be out of here by noon. Thank you for all your prayers.

Looking Up

Katie did not have a fever during the night. She let me hold onto her some this morning and give her hugs. She is in a much better mood. Better than I have seen her in several weeks. She is smiling and laughing while watching Dora. Thank you all for your prayers. Please pray we get to get out of this place SOON!!! =)

More of the same..

We have been admitted to room 910. If you would like to call us the number is 832-826-0910. Right now we are being told that we will be here until Katie does not have a fever of 100.4 or higher for 24 hours and does not have anything show up on her cultures. It looks like we will be here probably at least until Saturday. Thank you for your prayers. Please keep praying for Katie...she is having a very rough emotional time of it.

Here We Go AGAIN !!!!

We will be admitted to the hospital today. Katie's ANC is 0 which means she has no immune system/way to fight off infection. Please pray for us. We just told Katie yesterday that she had 13 more days until we had to go back to the hospital...little did we know she would get a fever not 24 hours later. Please pray for Katie's emotional state...and our's too...AND that we get a room soon! Thanks.

Bad News/Good News...Now another trip

Yesterday we got the call that Katie's bone marrow is not clear yet. That is bad news because there is still cancer in her bone marrow. That is good news because we no longer have to give her shots AND we get to be home for 13 more days! However that changed this morning. As I write this we are in the ER because Katie had a fever. Please keep us in your prayers today...Katie is really scared this time but we are trying to keep her spirits up. Thank you for your prayers and thoughts.

Happy Birthday Laura Beth!

It is amazing to me that my little girl is a year old today! I remember the first thing I thought when they put Laura Beth in my arms was "are you sure this is my kid? She has so MUCH hair!" (I was knocked out while they did the C-section after all! It stinks when the spinal does NOT work!) So much has happened during this past year. Our girls are such good friends and love each other so much. I can not imagine having two more loving little girls. Laura Beth LOVES to dance and pretend to talk on the phone. She can say 'hello' better than she can 'mama'! So much for reminiscing...

Katie had a really good day today. She played all day with Ashlyn and enjoyed every minute of it. They made cookies for Laura Beth's birthday, watched t.v. and played all sorts of games. When William got home, he took Katie to the store and she bought Laura Beth a rattle and pop toy. It was so cute to watch them opening the presents 'together'. Katie would pull the paper off some and then hand it to Laura Beth. Then Laura Beth would shake the present and hand it back to Katie....AND Katie ate some spaghetti O's and kept them down! I was so excited! Things are looking up...

**She had bilateral (both hips) bone marrow biopsies and aspirations on Monday (July 20th). We will not know the results till Friday or next week some time. For now we are just enjoying the time at home with each other.

Thank you for all of your prayers. You have prayed for us even when we did not have the strength to pray for ourselves...thank you...it means a lot to us.

Better Days

Katie had a MUCH better day today. She ate a little and even kept most of it down. She had a good morning playing with her cousin, Ashlyn. Then after a good nap she went fishing with her daddy and me. She hooked 3 fish and caught 1. She had a good time but is now tired. Thank you for all of your prayers...today was better because of them.

Getting ready to fish...

Fishing...

The BIG fish Katie caught..

Free At Last! Thank God...Free at LAST

We came home yesterday!!! Katie slept most of the way home and has laid around the house since getting here...but she is feeling some better. She still refuses to eat (though we have been able to get some bread, a popsicle, and some cereal down her in the past 24 hours). She has thrown up twice since coming home. She was not fond of the shot she had to get yesterday but we made it through it. (She has to get a shot every day to increase the good cells in her bone marrow in hopes that her bone marrow will be free of disease after this last round of chemo and can be harvested). Thank you for all of your prayers and kind words. You have helped more than you know. Please keep our family in your prayers. To be honest, William and I are at our breaking point and are not sure we can take much more. And Katie is a depressed little girl lately. And Laura Beth is just happy to have us all home in the same place. She (Laura Beth) seems to be the only happy one in the bunch...we are all just happy to be home...

Going Home...Maybe...

Katie has not thrown up since about 9:30 this morning. The plan right now is to go home tomorrow. Katie has an appointment on Monday morning at 8 to have another bone marrow biopsy and aspiration. If her marrow is clear and cancer free then they will put a central line in at her hip, take out the stem cells, and then take out the central line. We have to give her a shot every day to help boost the stem cell count in her marrow. They give these stem cells back to Katie after her 6th round of chemotherapy (which is particularly difficult). William is coming here to spend the night with us and then help us get all packed in the car. (Uncle Ricky is bringing him into Houston since he is having to go to work). Thank you for all of your prayers and kinds words.

????

Katie is still having problems with her digestive system. She continues to throw up and have diarrhea. She has not eaten anything since surgery. And she has drank very little since surgery. The physicians are trying to figure out why she is throwing up. Please pray that they figure this out so that we can go home soon. Thank you.

Another Update

The urinalysis came back that the blood is not in her urine. They will be taking samples of her next three bowel movements to see if there is blood in her stool. The nurse is now beginning her chemotherapy. So we will NOT be leaving UNTIL Friday at the earliest. Thank you for all of your prayers. Continue to pray for Katie's little body...she is still throwing up, she hurts all over, and just wants to go home. **She has only thrown up 3 times as opposed to yesterday she threw up 10 times** Thank you for all of the prayers.

Another Delay...Please Pray

Katie is having difficulty urinating without also having a bowel movement. In the last sample they took, there was blood in it. They have now put a little bag on her to catch the urine separate from the bowel movement. The chemo that she is currently receiving causes bleeding in the bladder. Please pray that this is not the case. Of course we also do not want her bowels to be bleeding either. Please pray for her health. Thanks.

Home at Last

We will be leaving the hospital at 10 p.m. tomorrow night. I hate having to leave so late BUT I am not staying here one more night than I have to! Starbucks and God will keep me awake to drive home! Katie is still throwing up this morning despite the several different medications that they have given her. Katie says she hurts all over today and feels sick. Hopefully some of that will subside after we get home. She misses her daddy so much and so do I...and her little sister too. Please keep us in your prayers. Thank you to everyone.

THANK YOU

The gates of heaven have opened and your prayers and mine have been answered! Katie FINALLY urinated and they were able to get the test done that they desired. The test came back with the right results and they decided to go ahead with the chemo TODAY. Right now Katie is getting some nausea medicine (zofran) mixed with steroids to ease her nausea. Once that is finished they will begin the chemotherapy medication. She is resting right now. She hasn't thrown up for about 2 hours. Thank you to everyone who prayed. It came in just in time because the doctors had already decided that they were going to wait till tomorrow to start chemotherapy but changed their minds when the urine results came back. THANK YOU again for all of your prayers and thoughts.

PRAY

The nurse states that they are going to start chemo at about 2 this afternoon. However she can NOT begin chemo until she goes tee-tee and it can be tested. Well Katie says that she doesn't need to go to the bathroom and even after sitting on the toilet for several minutes she has not produced any urine. She has however thrown up again (that makes 5 or 6 times today). Please pray that she begins to feel better and is able to urinate so we can get this whole mess started. Thank you in advance for your prayers.

Recovery Day # 8

Katie has had an upset stomach for the past couple of days. This morning she has thrown up 3 times. They have given her 2 separate medications for nausea but it has not seemed to help. She is eating some ice chips now and I am trying to get her to eat some goldfish in hopes of sucking up some of that stomach acid she is throwing up. I am becoming VERY frustrated because the chemo STILL has NOT started. Can you tell by my large letters that I am yelling on the inside?!?! I am trying my best to be nice but it is getting very hard...and to tell the truth nice doesn't get anything done! Please pray that things begin to roll and we do not have any more delays...as it stands right now we will not be going home until Thursday....please keep me in your prayers as well because I am starting to feel some what sick to my stomach as well...YEAH

9th Floor

Katie was transferred to a room on the cancer floor (9th) about 5 this afternoon. They will begin her 3rd round of chemotherapy tomorrow. Please pray for Katie. She has been acting strange this afternoon. I can not put my finger on it but something is not right. Hopefully she is just tired. She did state that she was scared though she wasn't sure what she was scared of. Please pray for peace for her.

Update on Layla (the 18 month old with stage 4 neuroblastoma who had surgery on Thursday) . She is still in PICU. She has been intubated since surgery but is suppose to get the breathing tube out tomorrow. Although she is on numerous strong medications to sedate her, she has pulled out her breathing tube, her catheter, and her central line. Of course all had to be put back in. Her blood pressure has been pretty low (50/30). Her mother looked extremely worried when I talked to her this evening. Please keep Layla and her family in your prayers as well.

Recovery Day...who knows what day!

Today has been a pretty quiet day. Katie watched her favorite movie, Lion King II, about 4 or 5 times. I finished a book I had been reading. And we both cat napped here and there. My parents and sister came by tonight. Katie had a good time with them and was sweet which is unusual for her lately. She has been against having visitors lately. She states that she will see them at home! Katie has not been in much pain today and has only had morphine once. She saw her "tummy sore" for the first time today. She stated "poor tummy sore..." and then went on about what she was doing. She has not eaten anything today and drank very little. She appears to have gone on a hunger strike! (Katie states that she will eat when she gets home.) But she is still on TPN & lipids (IV nutrition) so she will not get malnourished or dehydrated. They are going to TPN & lipids only 12 hours, instead of 24 hours, starting tomorrow. Hopefully this will improve her appetite. Please pray that we get to go to the 9th floor tomorrow and start chemo so that I can get back to work sometime this week and so I do NOT go crazy at the hospital! Thank you to all of you who have been praying for us. Thank you also to those of you who have been raising money for us. We are overwhelmed by the generous outpouring of our community and friends. We thank God every day for all of you. We know that you are being "his hands and feet" to us and we appreciate your willingness to be used by God to help us. We are so blessed by God even in this, the most tragic part of our life.

A Room!

We finally got a room today. We are not on the cancer floor but it is a regular room. We were so happy! Karla and Amy brought the baby up to see us today. It was so good to see her again. She makes me smile every time. They also took William home. He needed to get back to work as he has been off work for 2 weeks (taking Katie to Houston for tests and then this week with the surgery). Also because he can't take the hospital for more than a week. =) I am hopeful that they will begin Katie's third round of chemo on Monday and we can go home on Wednesday as planned. I need to get back to work as well. Katie is feeling better. She is now off of all monitors and is no longer requiring oxygen. Her poor little belly is still swollen and has several cuts/abrasions from the monitors, as well as the 8 inch incision. She has had a headache today and been tired this afternoon but all in all she is doing okay. Please continue to pray for complete healing for her.

Also please pray for a little girl, Layla. She is 18 months old and has been diagnosed with neuroblastoma stage 4 as well. Layla's surgery was on Thursday. Her surgeon was unable to get all of the cancer out of her abdomen due to involvement with the pancreas. Please keep her and her family in your prayers. Layla has 2 older sisters who, as well as her parents, are very concerned and upset by everything that is happening in their life due to Layla's cancer.

Frustration...

We have not gotten a room yet because the floor they would like us to go to is full. We have been cleared to go to a regular room for about 24 hours. As you can imagine we are a bit frustrated. Especially since we did not have a room at the Ronald McDonald house to sleep in or take a shower in. I slept in the bed with Katie and William slept in the car. Neither of us slept well. Please keep us in your prayers. Thank you.

More answered prayers

Good morning everyone. It looks like we are going to get a room sometime today. The doctors said that they may take her off of the oxygen today. The long recovery is going to make the chemo come a little later in the week, but that's ok because next week is pretty much shot any way. Katie's heart rate is down to about normal rate. Things have improved so fast over the past 24 hours that it amazes me. God truly is great! I hope each of you have a glorious day, may God's blessings be with you.

Things are looking up...

Things are getting better. We now have gotten the epidural and the catheter out. With each tube that comes out we get closer to Katie getting to be in a regular room on the cancer floor. Katie has sat up without assistance for 3-5 minutes at a time. And she has been cleared to eat ice chips/drink water! William's parents came by today. Katie was pretty cranky but I know that she enjoyed seeing them. And I enjoyed seeing Laura Beth! It was so good to hold and kiss on her =) Katie even enjoyed seeing her for a little bit. Thank you for all of your prayers...God is definitely working over time to get Katie better!

Recovery Day #3

We had a pretty good night last night. Katie is pretty alert and is sitting up in the bed now. She doesn't complain of much pain until you move her around. The doctors say that she may get to eat something soon. The surgeons want to move her to a room, but the PICU doctors want to keep her here a bit longer. We are headed in the right direction, her blood pressure is good and has been good since last night sometime. She still has a low grade fever, but nothing that can't be treated with Tylenol. Her puffiness is pretty much gone because her body has started doing away with the excess fluids because she is urinating a lot now. She has said she needed to have a bowel movement but refused to do it in her diaper because "she is a big girl and big girls don't do that." We got her bed pan to do it in but it was false alarm. This is a good sign that her bowels are trying to work. They are giving her blood because they have taken so much out of her for blood tests that she can't keep up. We thank God for His continued faithfulness towards us because we know that it is Him who is working through the nurses and doctors. We also thank God for all of you and for all that you have done for us in our time of need. It humbles Christa and I when we think of all that's been done for our family. I honestly don't see how people who are not Christians go through something like this, because it is hard enough with God and with all of you by our side. Thank you! Thank you! Thank you!

Baby Steps

The nurse just removed Katie's NG tube. Also Katie is putting out a lot more urine. She is still really swollen but at least she is getting some of the fluid out of her system. Her oxygen saturation is still in the low to mid 90s even with the oxygen on but she is doing some better. Again thank all of you for your prayers. William is currently taking a nap.

Expected Complications..Recovery Day 2

Katie had some difficulty during the night. Her lungs have begun to fill with fluid. She is now on oxygen with a concentrator and her head is elevated. This seems to have helped some. She is now having bleeding in her stomach. They have stopped the NG tube from pulling fluid from her stomach. They will check how much fluid they can pull out at about 2. If not much comes out then they will take the NG tube out. They also changed her acid reflux medication to help control the bleeding her her stomach. She is in some more pain so they are increasing her epidural medication. Her blood pressure has improved so that is a good thing. Her heart rate has went down but is still elevated. Please keep her body in your prayers. I did get to go sleep at the Ronald McDonald house last night and William will go take a nap there for a couple of hours. Thank God for sleep! Thank you to everyone who has prayed for us, called, and helped us in so many ways. We appreciate you more than words can express.

Correction

Our phone is currently not working properly. You need to call 832-824-5952 and ask for PICU 29. Please keep Katie in your prayers. Her heart rate has elevated up to 182 and is fluctuating, her oxygen stats have dropped and they put her on oxygen. She is resting okay. Please keep us in your prayers.

Recovery Day #1

Katie made it through the night fairly okay. Her blood pressure has dropped significantly several times. Normal for her is 80/50 and it has dropped to as low as 69/29. Her her heart rate has been elevated as well. Normal for her is 90 to 100 and last night it went as high as 180. They have determined, at this point, it is a reaction to shock from being in surgery for 13.5 hours. They are giving her fluids to attempt to stabilize her blood pressure and heart rate as well as increase her urine output. They were worried that she could be bleeding internally, having kidney failure or both. Currently the doctors do NOT think that is the case. They are adding another line in to be able to more accurately monitor blood pressure and signs of bleeding. Katie has been sleeping through most every thing that is going on. She only complains of pain when we change her position (position changes are to prevent pressure ulcers). She does ask for water which she can NOT have at this point. But she is satisfied with getting her mouth swabbed with some mint mouth rinse. THANK YOU again for all of your PRAYERS and kind words. We really appreciate them. PLEASE continue to pray for Katie's body to stabilize her blood pressure and heart rate.

Also we are not allowed to have our cell phones on in the PICU (Pediatric Intensive Care Unit) but there is a phone in the room that you can call us on. The number is 832-824-7062. If you lose this number you can call the main line for the hospital (which I don't know at this time) and ask for bed 29 in the PICU.

Day of Surgery (9)

Dr. Jed just came out to talk with us. He stated that Katie she did well during surgery. He removed all the tumor that he could see or feel. We should get to see her soon. Thank you. I will give you updates as I can. Thank you for all of your prayers.

Day of Surgery (8)

They just called and said that they are finishing up. Dr. Jed should be out to talk with us in about 30 minutes. Please continue to pray for Katie's recovery.

Day of Surgery (7)

Katie has been in surgery since about 8 this morning. That makes almost 12 hours... Dr. Jed began his work about 10. Since it is after 6 there is no longer any nurses or receptionists here in the waiting room. Therefore we have not received word from the operating room. (Previously they were calling from the OR about every 2 hours to keep us updated). My parents and sister and William's parents and one of his sisters are here with us. (Amy is at home with Laura Beth...someone had to hold down the fort!) Everyone is getting a little anxious to say the least...and a WHOLE lot bored. Please keep Katie in your prayers...it is so hard on her little body to have a surgery that lasts so long. Remember to pray for Dr. Jed...that his hands are steady, his eye sight is clear, and his mind is not fatigued. Thank you so much for all of your prayers. We love you all so much.

Day of Surgery (6)

More of the same...Katie is still doing good and Dr. Jed is still working. It will be a while longer. Please keep praying for Dr. Jed to have clear thought, clear vision, and energy. Thank you for your prayers.

Day of Surgery (5)

Latest report/update....They have gotten out the large mass and are now working on the intricate parts...please pray for Dr. Jed to find ALL of the little bits of cancer in Katie's abdomen. Thank you in advance for your prayers.

Day of Surgery (4)

Another update....Katie is doing well in surgery. They are currently working on taking out the main tumor (on the adrenal gland). Keep lifting the surgeon up for good stamina and steady hands.

Day of Surgery (3)

The nurse in Katie's surgery just called for our first update. She said that Katie did well with anesthesia and that the bone marrow aspirations and biopsies have been completed. Dr. Jed is now beginning his part. Please continue to pray for him and Katie. We should get another update about lunch time or so. Thank you again for all of your prayers. We can certainly feel them...God is granting us a peace that passes all understanding.

Day of Surgery (2)

We met all the doctors and signed all the consents. Then they gave Katie some 'funny' medication and wheeled her away. She was laughing and giggling along the way. We should get updates about every 2 hours and will keep you updated.

Day of Surgery

Today is the big day! I will try to keep everyone posted throughout the day as we get updates. So far we have been registered, dressed in hospital pajamas...and begun the waiting. So far so good. Please keep Dr. Jed in your prayers as he prepares for Katie's surgery. Keep us in your prayers for sanity and Katie for good health. Thank you all so much for all of your prayers. We appreciate them so much.

The Best News Ever!

Yesterday William, myself, and Katie met with Dr. Russell (Katie's oncologist). And she gave us great news. The large tumor on Katie's left adrenal gland has shrunk in size by 1/2 to 2/3rds. Many of the tumors in her bones have shrunk as well...and those that didn't shrink have just disappeared! The only thing I could think as she was tell us this was "Thank you God!" It was so good to hear. Since everything is looking good, the surgery is scheduled for Monday July 6th at 7:30. We have to be at the hospital at 6:00 to do pre-registration and all that good stuff. Katie will be in surgery anywhere from 13 to 24 hours. Please pray for her and the surgeon (Jed Nuchtern). After surgery, Dr. Russell said to be prepared that Katie will go to ICU for a day or two and then be transferred to the cancer floor. She will have one week of recovery and then begin her 3rd round of chemo on July 13th. We should be home by the 15th or 16th of this month. We will be home about a week and then have to go back to the hospital (out patient) to get a central line placed in her groin and have the stem cells extracted. That is all the news for now. Thank you so much for all of your prayers and support. We love you all so much. And a big thank you to Aunt Marian who let us stay at her house Wednesday night so that we would be closer to the hospital.

A week of tests.. Day 2

Today was a great day. William and his mother took Katie to get her bone scan today. She did not require anesthesia, which is a good thing because that means that she got to eat lunch. Katie did well with the bone scan. She didn't cry but she did get 'a little' upset (as Katie would say). William says that the only time he really thought she was going to cry was when they went upstairs and the library was closed...but then she got to see the large aquarium and was happy again. Thank you for all of your prayers. Please continue to be in prayer for Thursday and for the surgeon who will be performing the surgery on Monday July 6th.

A week of tests

Yesterday began our week of testing. Monday Katie had a GFR (a kidney function test that tells them how much chemo her body can take). The GFR is easy because they put medication in through her central line and then draw blood out at certain times through her central line. She and William had a good time playing in the library on the 16th floor and looking at the train room (a little bit of grandpa coming out in her!). Today is a little harder...she has a bone scan. She is not particularly fond of the bone scan, CT scan, and MIBG because she has to lay still in a large machine. It is open at both ends and William can be right next to her...but it gets awfully close to her face and body, which of course she does not like. Wednesday will be easy because all she has to do is get an injection through her central line. Thursday is the HARD day. Please be praying for us. William and I will both go with her on Thursday. (I am staying at home Monday -- Wednesday...someone has to work around here! LOL) We have to be at the hospital at 6 a.m. on Thursday morning to drink the contrast for the CT scan. Then we have the CT scan, the MIBG (similar to the bone scan but for soft tissue, like muscles and organs) and a doctor's appointment. We should know how things look after our doctor's appointment. If everything looks good Katie is scheduled for surgery on July 6th. By looking good, I mean that the large tumor on her left adrenal gland has gotten smaller. The surgery on July 6th is a long and very invasive surgery. We have been told that it will be any where from 13 to 24 hours long. Please begin to pray for Katie, us, all our extended family, and of course the surgeon (Jed Nuchtern). Thank you all in advance for your prayers.

Small accomplishments

Yesterday was our last round of the 'nasty oral chemotherapy' medication. Katie was so excited this morning when she did not have to take the medication. She is doing well so far with dealing with everything. We just wanted to say thank you to everyone who is bringing us food, gifts, money, and giving of their time to help us. We love you all so much. We can not express our gratitude to all of you. Thank you for reminding us that we are not going through this alone.

One Long Night

Well...Katie had surgery at 11 last night to put a new central line in. Everything went well with the surgery. In the recovery room I discovered that Katie's 'white blanket'(i.e. security blanket) was missing. As you can imagine I was NOT a happy mother. After some persuading I got our nurse to go and look through ALL the linen bins in the OR...and the blanket was found! Katie was happier and so was I. We got home about 4 this morning and I got a little nap in before I went to work this morning =) Thank you for all your prayers.

Here We Go Agian

Today I got off work early so that I could be home for the home health nurse to change Katie's central line dressing. During the dressing change the nurse cut Katie's central line & we have had to head to Houston. At first we were told if we clamped the central line they could repair it without surgery. However, after looking at the line they stated that surgery was required because the line had been clamped too close to the skin. So as I write we have been told that surgery will be performed tonight & then we can go home. We have been assigned a room on the oncology floor & will be allowed to go there after it has been cleaned. Please pray that the surgeon has had plenty of sleep & knows what he is doing! =) I know accidents happen but I am beginning to get frustrated with so MANY accidents... please pray for my patience, Katie's peace, & comfort for William who is at home & worried about his daughter. Pray as well for the surgeon who is preforming the surgery. Thank you in advance for your prayers.

Great Day

Today has been a good day. We changed up the medicine routine by taking it in the morning instead of the afternoon. For the first time she did NOT throw it up AND it was done in about 15 minutes (instead of the hour to hour and half). Then William, the girls and I went to see Great-Grandma. She made chicken and dumplings from scratch (her speciality) and of course they were delicious. Katie got to spend some time just her and Great-Grandma while William, Laura Beth and I went and did some errands (Katie can't be out in public right now). Great-Grandma and Katie had fun together. Then some ladies from the church (Linda and Sharon) came by to drop off food and spend some time with us. It is always nice to visit with them. Oh and we got a package of books from Ms. Tessa (friend from BVRC). So all in all it has been a great day.

Home Sweet Home

Sorry that I have not posted since leaving the hospital....We did get to leave on Tuesday night. Katie had to take the 'nasty chemo medicine by mouth' before we left the hospital...and she had to take it TWICE because she threw it up the first time. BUT we did get to leave around 6 and got home some time around 9. Since getting home, Katie has been doing pretty good. She hates taking the medicine and it takes alot of coaxing and crying (on both our parts) but we have been able to get it done every night. Other than taking the medicine she has been acting pretty normal. She loves playing with her dolls, fighting with her sister, dancing, singing, and coloring in her coloring books. As for me and William, we are having trouble finding where the time goes! I am working less and driving less (took the job in Madisonville at Riverwood Nursing Home instead of BVRC in Bryan) but it feels like I don't have time to do anything...most of my night is consumed by getting Katie to take her medicine and getting her hooked up to her IV fluids at night. It has been hard emotionally and physically. Keep praying for us to find peace & time to enjoy our girls. You never know how much you miss a routine until it is taken away from you!

The internet FINALLY let me post some pictures from the past several days...

The first one is Katie in her gloves with her doll Suzie...just getting ready to change the doll's central line dressing.


Katie is changing Suzie's dressing.


Katie is laughing and having fun with Suzie.

And here she is just clowning around and having fun in general...

Here is her new trick...riding on the IV pole.

This is a picture of the puppet show we went to in the playroom.



This is Katie with the puppet she made after the puppet show.

Next she is making some glitter glasses!


And here is what Katie looked like AFTER she & my sister made those glitter glasses =)

Going Home

We are going to get to go home today AFTER we take our medicine (the nasty one). Last night Katie threw it up the first time...the second time it took an hour and a half to get it down her. It is about to pull me apart at the seams. To be honest, when I am trying to get her to take the medicine and she is crying and so upset and I am upset and angry for having to do this...it feels like I am taking something from her that I can not give back. It has been a very hard couple of days. Everything else except the medicine routine has not been that bad...we will be home for a week and a half and then back for scans on 4 separate days. Keep us in your prayers. Thank you for everything all of you have done. We appreciate you so much.

Quiet..

The posts are sporadic because there is not much to tell. Basically we are just here for the chemo and nothing else. And... praise be to God because Katie has not had any real problems this time (vomiting or diarrhea). The oral chemo medicine did go down better last night after the nausea medication kicked in and made her sleepy. She doesn't even remember taking the oral chemo! So that is the route I plan to go again today. Hopefully we will get to go home tomorrow....

A day for meltodwns...

Today has been eventful! William, Aunt Karla and Laura Beth came to visit. We had a pretty good visit...however they were here in time for medication and it became a real struggle today! It took us an hour to get her to take about one teaspoon of etoposide (chemotherapy medication taken orally). BUT the good news is that she did finally take it and she got some anti-anxiety medication which has made her ALOT happier. After William, Karla, and Laura Beth left some youth from a local church came by and brought us a prayer blanket. It is soft and pretty...William also brought a beautiful blanket that some ladies from Madisonville quilted for us. So we will be warm tonight!

**I wanted to add some pics from the past couple of days but the computer is being squirly and not letting me...maybe at a later day.

Another Quiet Day...

Thank goodness for quiet days! Everything has been pretty quiet around here. Katie has been in a really good mood. So far, the chemotherapy has not affected her as bad as it did last time. But the reality of it is, she was a lot sicker last time. It gives me hope that this chemo is really working. She took her medication a little better today. We have begun a sticker chart. For now, every sticker she get something for her doll, Suzie. Once we get home we will start to increase it...for every 2 stickers you get something, then every 3 and so on. Some good news is that if she wakes up tomorrow without yucky eyes she can go to the playroom. She is excited about this. All she wants to do is play games that they have down in the playroom....so if any of you would like to get us travel games, have at it (they are easier to lug around with you)...

Also wanted to let everyone know how very much we appreciate all the wonderful things that you have done for us. I can not tell you how overwhelmed (in a good way) we have been by everyone's generosity. People we do not even know are sending us cards, money, and gifts. We are amazed daily by God's wonderful love for us. Because of this we KNOW that He is going to bring Katie through this. I can not imagine life without her...and I just know He has big plans for this little girl.

Quote for the day

Today is going well. Here is the quote for today:

"What is faith? It is the confident assurance that what we hope for is going to happen. It is the evidence of things we cannot see. God gave his approval to people in days of old because of their faith."
Hebrews 11:1-2 NLT

We are believing that that which we hope for (Katie's complete recovery) will become what we can see!

Back Again

Today, Katie and I (Christa) headed back to Houston for our second round of chemotherapy at TCH. Daddy stayed home with Laura Beth this time. We got to Houston about 9 this morning....after some waiting we now have a room at 3 this afternoon. But to be honest it has been a good day. This morning there was a group of girls who danced some Chinese dances for the kids at the clinic.
Katie LOVED it. She was dancing around while they were dancing & then she got to actually dance WITH the girls. She was so excited. And then she made a dragon out of paper plates. To say the least she was impressed.
After we got to see the nurse practitioner & the doctor, we were put on isolation due to our pink eye. BUT that was okay...a little quiet was good. We played on the computer & read books. We even got free pizza delivered...And the Child Life Specialist gave us a doll with a central line & a kit for pretending to change the central line, taking blood, etc. She has named her Suzie. As I write she is changing Suzie's dressing for the fourth time.

So we are doing pretty good. The plan for right now is chemo through Sunday night, then a day to flush her line out with fluids & go home on Tuesday. Then we should be home for about a week & a half before we have to come back for scans. If the scans look good we will then have surgery to remove the large tumor on her adrenal gland & begin with a third round of chemo.

Another unplanned visit to Houston..one of many

Katie began to have diarrhea on Tuesday and it continued to get worse on Wednesday (20+ times we were running to the potty!). When I called the oncologist they suggested going to our pediatrician. The pediatrician thought Katie was becoming dehydrated and referred us onto TCH because she (the pediatrician) was not comfortable treating her (Katie) because of her complicated diagnosis. So on to Houston I go. We made it there about 6 yesterday. We were in the E.R. for about 4 hours. They gave her fluids, took some blood, and did a stool culture. Basically stuff that could have been done at the Med (at College Station). So to say the least we were frustrated. BUT the good news is that we did get some different pain medication. It is still suppose to be taken by mouth but MAYBE it will taste some better. We got home after midnight this morning, but at least we got to sleep in our own beds. Please keep us in your prayers for finding a pediatrician, in town, that will feel comfortable dealing with the little things that come up. Thank you.

And we are waiting AGAIN

Today William and Karla took Katie to Texas Children's Hospital (TCH) Clinical Care office for a weekly checkup and blood work. As usual there was a lot of waiting involved. (The appointment was at 12:50 p.m.) They were unable to draw back blood from her central line. This is usually caused either by a clot in the line or by the central line moving out of place. They had a chest X-Ray done and the verdict was that there was a clot. So...at 4 they gave her some medication to dissolve the clot. Then they had to wait for 2 hours for the medication to work. At 6 they were unable to draw back as much as they desired but sent them home anyway. Katie has a check-up at her pediatrician on Friday. We will see what happens then...but on a good note all of her blood counts looked good (they were better than her last count at the hospital).

Appreciation

Yesterday, May 31, was the dance recital for Lori's School of Dance. Our daughter, Katelyn, was unable to participate because she is unable to be around large crowds due to her low immune system. At the dance recital, several women got together and set up a benefit for us including a raffle and silent auction. William and I would like to thank everyone who made the benefit for Katelyn a success. Thank you to the mothers from dance class who got donations for the auction. Thank you to those of you who donated items, bid on items, and bought raffle tickets. A special thank you to the women who did all the hard work putting it together: Erica Blakley, Candice Boyd, Lori Hagaman, Lola Hardy, and Vicki Prine. The five of you are very special to us and Katelyn. Words can not express our gratitude. We are truly blessed to have such a wonderful community who has come to our aid when we needed them the most.

Christa & William Connor