Needed Prayer

Today was a great day for Katie. It was her first day back to daycare! She woke up at 5:30 but was able to lay on the couch until 7:15 when mom got up. However, once she got up with mom she was BOUNCING...It was like she had ants in her pants. Once at Granny's she ran over the big girl's side of the room and began to play. The other girl her age did not arrive until lunch time, as she has school in the morning. From all reports, Katie had a great day. She ate TWO helpings at lunch time...and she was very excited to report that she got to sleep on a mat beside Kate (previously she had to sleep in another room because she talked too much). Katie ate a good dinner when we got home and continued to play. Her blood counts were good today. Tomorrow she will stay with her sister at grandma's house because all of her grandmother's sisters will be here tomorrow and of course they would like to see her. The rest of the week she will be at Granny's.

Please continue to pray for us. We have decided to go the route of the 3F8 in NY. However, the doctor in NY is out of the office all week. His secretary was out today but will be back tomorrow. We are very unsure of what to do and where God is leading to us. Please pray for discernment for us. Thank you.

More News

We spoke with Dr. Russell yesterday. Katie's MIBG (soft tissue/nerve scan) results came back. It showed that she still had disease on her right hip. She has had this all along (it has been the brightest spot) but it is less bright now. The other areas have gone away. The chemotherapy and surgery have helped...just not as much as we had hoped. Right now we have 3 options. We could go to New York for an antibody therapy (3F8)...this is also being done at MD Anderson in Houston and Cook's Children's Hospital in Fort Worth but Dr. Russell was not sure the trials were open right now. The second option is an oral medication that Katie would take. The third option is more chemotherapy, although it would be a different class of drugs than she has previously received. All options are outpatient treatment and they all have different side effects...but no one can say for sure what works best in the stage of treatment we are in. William and I are leaning towards going to New York not only for the treatment but also because we would like a second opinion. It is always good to have two people thinking about things that one....please keep us in your prayers as we have to make a decision over this weekend and begin working on getting treatment next week.

Katie is doing great! She is happy and playing all the time. She has her moments where you can tell she is worried or scared but 95% of the time she is just being a kid.

Fun Times

Katie had a really good day, yesterday, with Nana and Aunt Ashley. She was running and laughing just like she did before she got sick. However, I think she must have tired herself out because this morning she was very GRUMPY!!! Hopefully she will take a nap today and feel better. We go to Houston tomorrow and have the MIBG scan on Thursday. We will most likely NOT be meeting with Dr. Russell on Thursday and instead have a speak with her on Friday about the scan results. Our next course of action depends on the results from that scan. William and I are contemplating calling MD Anderson or Sloan-Kettering in New York for a second opinion. Please keep us in your prayers...pray that we may be able to discern what is best for Katie...

Good Days...

Katie has had a good week. She has been running around like a wild woman and having fun doing it. However, today it finally caught up to her. She was tired and cranky today, even though she slept about an hour later than usual, but after a good nap her crankiness wore off and she was up and going again. Please pray for William and I, as we will meet again with Dr. Russell next Thursday to discuss treatment options. One of those options could be going to New York for a second opinion and treatment. Of course this is not what we would like to do but as I have learned through all this... my plans are NOT His plans...thank you again for all the support you have given to us during these past 5 months...it is truly a blessing.

Continuation of Good Days...

Katie, Laura Beth, & I slept a little late today (till about 8). Her blood levels were good today & she did not need blood or platelets. Her white blood cell count was up & she no longer needs to have shots every day. She of course is very happy about that! Katie spent the day at grandma's house & had a blast. Katie talked for a long time with a friend of grandma's who came over today. This is unusual for her lately. I was glad to hear that she was being a 'nice girl' =) Katie & grandma also made me a birthday cake (yummy) & Katie colored me pictures. All in all she had a good time.

Good Days

We have had a good weekend. Katie had the best day on Friday. William & I took her to Granny's & she played with her two best friends (Kate Hagaman & Zoey Blakley). She had the time of her life. She dearly misses getting to see these girls at daycare & going to dance class with them. Kate & Katie played doctor, ring toss, and babies. When Zoey got there they played some more! The girls had a great day. Thank you God for the blessing of this day. When I have pictures that I took and one's that Zoey's mom (Erica) took I will try and post them.

On Saturday Katie & I went shopping for Kate's birthday present and made strawberry cupcakes (that we still have not had time to put icing on...Much to Katie's dismay). Katie & Laura Beth then went to Grandma & Grandpa's house while William & I went to a wedding. We had a good time & I enjoyed spending some time with some of the friends that I do not get to see very often.

On Sunday we went to church. Katie loved getting to go to Sunday School with Miss Sharon. She enjoyed being around her numerous "mimi"s and having fun. Before night church we had a prayer meeting. One of the things they prayed for was Katie's complete healing. This meant a lot to us and we truly feel blessed to have such a wonderful church family.

Please also pray for one of our church members, Donna Shannon, as she is in the hospital right now due to some heart problems.

Thank everyone so much for everything. Even though we are going through a truly horrible time right now we DO feel God's love & support. He has been supplying our needs through all of you & we appreciate your love & kindness. May God repay you 100 fold.

Bad News...

First I would like to say that we had a really great day. Katie, William, and I laughed, joked and had fun today. Katie made it through the CT scan without difficulty. Then the bad news came. Katie's bone marrow is NOT clear. This of course is a very crushing blow to us. Dr. Russell presented us with several different options. After her scan next week (MIBG) we will meet again with Dr. Russell to discuss where we will go from here. Thank you for your prayers, thoughts, kind words and everything you have done for us. We know that God is in control of Katie's life even when we feel all hope is lost. We will continue to fight this disease and know that God has a plan for her life. Please continue to pray for us.

AWESOME DAYS!!!!!!!!!!!

Today has been a wonderful day. Katie and I finally got home about one this morning. I took the day off because I was so tired...While I ran some errands Katie stayed at Marilyn's house. She had a GREAT time. She made a card for great-grandma and wrote it almost all by herself. She then made a cake. We called it Katie's Leftover Cake because she put all her stuff that she didn't finish eating into the cake (i.e. raisins, apples, nuts) along with some cake mix and honey. Amazingly it was good! LOL Then Katie and I went home and took a LONG nap...after we had laid in bed for about an hour talking and laughing. I am so thankful to God for this day.

Tomorrow William, Katie and I will head to Houston. At 11 Katie has a CT scan. She has to drink some yucky contrast drink before the scan. Please pray this goes well. At 2 we have an appointment with Dr. Russell. Hopefully a Child Life Specialist can take Katie to play while we talk with Dr. Russell. At the appointment we should learn the results of her bone marrow aspiration/biopsy. We are going to spend the night in Houston because we have another appointment in Houston at SEVEN in the MORNING on Friday. Thank you for your prayers and kind words.

Confusion Part 2

When you last left us we were getting we were waiting for our bone scan.....

**We got our bone scan. Katie did really well staying still and did not freak out at all. She tolerated the machine getting close to her face and everything.

**While in the bone scan a nurse came in to say that they wanted to change our MIBG date (a test that was scheduled for this Thursday)....While in the scan I also received a call that Katie needs a blood transfusion.

**We were about 30 minutes late to the audiogram. The audiogram started 45 minutes later than scheduled....Katie is losing some high frequency hearing. Her right ear is better than her left. The chemotherapy can continue to affect her hearing even after it is finished...

**We then went to get the echocardiogram. They had trouble taking pictures of her heart because of the placement of the central line. Where they were to put the probe was where her central line is tunneled under the skin and muscle. However, even with the pain, Katie fell asleep.

**We are now at Dr. Russell's office. They are going to do a blood transfusion BUT we have to wait for a room to get transfused (they can not do it here BECAUSE it is too late...the blood runs over 2-4 hours and this office closes in an hour and half....)

**They will not transfuse platelets today....but will do a CBC on Thursday when they come to see if she is low enough to need platelets (they infuse at 20 or below and she is at 30)...

**Her Wednesday appointment has been cancelled....she has a CT scan on Thursday and possible platelet transfusion. On Friday we need to be at the BMT for blood work at SEVEN in the morning...

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.