Sadness

William, Katie & I headed to Houston today. Katie received blood, and platelets today. After they finished giving her blood products, we had them take out her PIC line. She was none too happy about this BUT I know that it will make our trip a little better...speaking of the trip PLEASE pray for the weather to be good. With this hurricane, it could very well rain on us the whole trip...

While Katie was entertained by the nurses (aka her entourage and admiring fans), William and I met with Dr. Russell. It was a hard meeting. She was not hopeful that Katie would be with us more than a couple of weeks or so. She gave us information about what would come to pass and how to handle things. Hospice will contact us tomorrow. From the information we have, we do not think that the Burzynski clinic is a good idea. We want to enjoy the last days that we have with our precious turkey. Thank you all for your support and love. We are overwhelmed by the generosity and love that has been shown to us during this past 13 months. We truly feel that is the blessing in this horrible situation. THE most important thing you can do for us right now is to PRAY. We still have hope in our heart that God will heal her. We know he can heal her but we don't know if it is in his will to do it on Earth. We have talked with Katie about heaven...her comments were that in Heaven she could play with Layla (another little girl who had neuroblastoma and who passed a couple of months ago) and the other Angels and that she could sit in Jesus lap and play with Him. We are thankful that our daughter loves Jesus and will be healed and perfect in Heaven and that we will one day get to see her again.

Burzynski Clinic

Word has gotten out that we are looking into going to the Burzynski Clinic in Houston. I found their website through a friend and was interested because it sounded like something that we have not done before. As all of you know, we are grasping at straws here but it appears to be something that might help. I have been made aware that many of you are trying to find ways to help us out financially (the clinic doesn't take our insurance) and we appreciate this more than you can know. It warms my heart to hear how people are ready and willing to try to help us. BUT please wait on raising money for us....we are not sure that one they will take us as a case and two that it is something God wants for us. We don't want to put Katelyn through any more painful medications or procedures...and we are not sure exactly what this clinic is about. AGAIN THANK YOU for your support. Please continue to pray for us...William & I head to Houston today to talk with Dr. Russell about her scans and where we go from here. Prayer is the most important thing you can do for us...

Day by Day

The weekend passed like a blur. It doesn't seem real that my 'first born baby' (that is what Katie calls herself) is dying of cancer. It just seems like any minute Dr. Russell will call to let us know that she was looking at the wrong scans....but I know that it isn't true. We continue to pray that a miracle will happen...we continue to attempt to live life as normal. It is hard but it is something that we have to do for Katie and Laura Beth's sake. Please pray for peace...the pain comes in waves as does the anger. Despite the circumstances we continue to believe that there is a God and that He DOES have a plan for us and for Katie. I am praying that His will is to heal my precious 4 year old on this earth but I KNOW that His plan is greater than mine....but it is just hard to accept. Please remember to thank God for the healthy children that you have and please remember that they NEED to hear that you love them. Enjoy your day and please continue to pray for us. Thank you.

***Make-A-Wish is sending us to San Antonino this Thursday to spend 5 days. We will go to Sea World, Morgan's Wonderland, the zoo, Aquarena Springs, and a safari place. Please be in prayer that Katie feels good enough to enjoy it and that we have a FABULOUS time. Thank you***

hard days

Hi everyone, this is William, just wanted to let everyone know how things were going. Last night we decided to take Katie and Laura Beth to Galveston because Katie has been wanting to go for a while. She had a pretty good time although she tuckered out very fast. She now has her very own seashell collection. Laura Beth enjoyed herself as well. It was a fast trip but one we are glad we took. The last couple of days have been unbelievably difficult for my entire family. My mom cried like I have never seen her cry before, my sister who has been a rock through all of this could barely hold it together. One of Katie's cousins cried when he heard the news. Christa is taking the news the hardest of coarse, and me, I don't have any tears left. We have decided to not tell Katie the news because she doesn't need anything else to worry about, and really what good would come from it. For those of you who have had the pleasure of talking to Katie and have gotten to know her you know how smart she is. She already senses that things are not good by the way she feels. She knows all to well what is going on. That is one reason why this is so hard. She understands that this is not her fault or anyone else's fault, but she like everyone else wants to know why. This is not a conversation your supposed to have with a 4 year old. She is wise beyond her years and could do great things when she grows up, that's why I still hope and pray she will get the chance to grow up and show the world Gods power and authority over death and the grave. Thank you to all who are supporting us through this, all of you have touched our lives in a mighty way. God bless each of you.

Bad News

Dr. Russell called today. Katie's cancer has spread. The ones on her skull are pressing into her brain. She had numerous ones on her legs and arms...she has several in her lungs. The one pressing on the nerves to her bladder is larger. She has ones in her pancreas. There are no other options for treatment...we will begin planning for her death. Please pray for a miracle...and for peace.

Scans

Today Katie & I headed to Houston. She needed platelets & to get an injection for her scan that is tomorrow. It was a crazy day but one that I am use to by now. We were there from 9 to 3! Tonight we are getting some much needed rest at the Ronald McDonald House. Tomorrow we will get there about 7:30 in the morning and I am sure we will be there till 4 or 5. Katie has to get blood, have a CT scan, have a MIBG scan, and have an office visit with the nurse practitioner. She will be sedated for the MIBG. She has done it before without sedation but it is so very hard on her because she has to lay still for about an hour, it just isn't worth it. Also during the office visit I will have them cath her because they really need her bladder to be empty for the MIBG scan so that we can see the tumor that is giving her the most trouble. Please pray for the results to be good. We will probably get results on Friday.

I have really been wanting to write a post about Katie...about who she is...Both for those of you who do not know her personally and for me....But I just have not had the strength to write that kind of emotional blog. William and I struggle daily with the reality of our oldest daughter going to heaven before us. It something that you just can not put out of your head. It is physically exhausting....you vacillate between fight mode and despair mode. We hate having to put her through all this pain. In case you have never been through cancer treatments before....you should know that they are very painful. Katie has been so wonderful through it all. She makes me laugh when I want to cry...and she reminds me, ever so often, why I am fighting this terrible fight. Yesterday I took her to see Toy Story 3 in 3D. I loved watching her bob her head to the music and try to reach out an touch the toys. (By the way if you have children 5 and under it isn't the most entertaining movie for them IF they are not totally into Toy Story...Katie and I left about an hour and half into it). It made me smile to see her having fun. Anyway...I pray that all of you have a wonderful night's sleep.

Pray for today: Katie will be calm during all the rig-a-ma-roll tomorrow and that the results will show some improvement!

Prayers & Choices

Today was Katie's last day of chemo for this round. All in all, she has tolerated it well. Her diarrhea has subsided. She is urinating on her own, but has had to be catheterized a few times due to her bladder not completely emptying. She is walking but continues to walk on tip-toes for her left foot...

Next Thursday Katie has her scans. These scans (CT & MIBG) will let us know where we are in terms of her disease (has it remained stable, gotten better OR gotten worse). The results of these scans determine our next course of action. Please pray for God's will to be done. It is so hard for us to pray for that...but yet it is what we pray because we know that his will is far better than what we can see. Why is it hard? You must keep in mind that God's will may not be for Katie to be healed on this earth...and that breaks our hearts. BUT there is hope. There is a little boy named Colby who has also been fighting this battle...and his scans yesterday showed that he is disease free after six months without treatment! Colby lives in College Station & his oncologist is Dr. Russell. You may have even read about him in the Eagle a couple of months back...there was an article about Children's Miracle Network and he was mentioned and his picture was on the front page. I am grateful to hear about his miracle...and pray for one for my daughter.

Also the Make-A-Wish volunteer came by today to start us on the paperwork needed for us to get a wish (we have been approved but there is alot of paperwork to be done to make it all happen). Originally we wanted to do a Disney Cruise because Katie loves fish and we thought she would enjoy this. But it doesn't look like a cruise is in our future because she has been needing blood products frequently and we would not have that available to us on a cruise ship. BUT Disney World looks like a good option. William & I are just trying to find something that she would enjoy and be able to do...after looking around the website it looks like Epcot has plenty she would LOVE! Please keep us in your prayers as we make the decision on what to do. This trip would be a chance for us to just be a family and enjoy some time together...we need that!

Thank you to everyone who has prayed for us....we appreciate it...the squeaky wheel gets the oil!

Day 1 & 2 of Chemo

Katie and I headed to Houston on Monday...to say it was crazy would be an understatement...but we handled it okay. She did receive her chemo and some platelets. Her tummy was swollen again and they did an ultrasound which confirmed that her bladder was really full again. They did an in/out catheter. The nurse used the smallest catheter that they had in hopes to make it less traumatic...didn't really make it any less traumatic BUT it did take and ENTIRE hour to drain 400cc from her bladder. Fun times...always love staying from 9 in the morning to 6:30 at night at TCH.

Tuesday, William took Katie. Things went much smoother for them. Katie did well with urinating and eating. The doctors were happy with how she looked and was acting. (like her old self...talking non-stop).

Wednesday, (today) I am going to head to TCH with Katie. They are supposed to teach me how to in/out cath her....please pray for peace for me & Katie. Thanks!

Pictures

I am sorry that I haven't written in a while but I just have not had time. Katie has had a pretty good week. My parents & sister came to take care of the girls this past week while Granny is on vacation. They had a good time. Katie is getting a little better every day. Laura Beth is finally over her cold...unfortunately she gave it to me! But I am doing better too. Today Katie, Laura Beth, William and I went swimming!!! We had a blast. At first Laura Beth wasn't sure about being in the pool but she quickly became acclimated to the water and enjoyed herself immensely!

Please remember to continue to pray for us as Katie has another round of chemotherapy next week. I will be taking her on Monday, Wednesday, and Friday. God bless Karla who is going to take her on Thursday!!! AND please pray for William who is taking her on Tuesday. We have scans on June 24th...we are praying for complete healing...please join us. Katie has been worrying me because she has been complaining of her chest hurting (she has a tumor in her lungs). Thank you for your prayers and for tolerating my rambling.

Here are some pictures from the day and the past several weeks/months that I have been meaning to put on here.

The girls enjoying some swinging time back in April

Katie singing into a onion flower that great-grandma gave her.

Laura Beth all smiles!


Katie helping in her garden hat & gloves back on May 1st


The girls working hard to help in the garden!

Laura Beth in the dress from Ms. Mary.

(Notice she is talking on the phone...her favorite pastime)

Katie at the Rainforest Cafe in Houston

Looking at a dinosaur at the Houston Zoo "Dream Night"

Katie touching a blue tongued lizard at the Houston Zoo "Dream Night"

Laura Beth in the eagle's nest at the Houston Zoo

The girls at the Houston Zoo with their favorite toys that they were given!

Today in the pool!

Update

Laura Beth & Katie did enjoy the zoo on Friday night. Radiation was finished on Friday. Chemo will begin on June 14th with scans on the 24th. We are home now and we had a pretty good weekend. Tomorrow Katie & I are heading to Houston so that she can get a platelet transfusion. Since her bone marrow transplant back in November it appears that her body has the most difficult time maintaining adequate platelets when it is hit with chemo. Also this morning, Katie's Foley began to clog with a cloudy white substance. It has continued through the day but we have managed to keep it flowing (with some help from Karla and some finagling on our part.) Please pray that they will remove the Foley tomorrow and that Katie will be able to completely empty her bladder on her own. I continue to feel very overwhelmed and have a million things running through my head...please pray for health and peace for all of us. (Health for Laura Beth too...she has a cold which (as usual) has settled in her eyes. Poor baby can't even open her right eye in the mornings because of all the gunk.) Thank you.

Happy Day!

Just a quick note to say, "Thank you God for the wonderful day!" Katie had a wonderful day. We had to spend most of the day at TCH but that was okay. She was smiling, laughing and happy for 90% of the day. After leaving TCH we went to the Butterfly Center at the Houston Museum of Natural Science. Katie loved it. She touched a butterfly and it actually turned to look at her! I was as amazed as she was. But then it flew at her and she practically lept out of my arms! She still isn't walking much but she is sitting up more and is having less pain. AGAIN...THANK YOU GOD!!!! Tomorrow all four of us are going to Houston for Katie's last day of radiation. We are going to go to a Dream Night at the Zoo. They have special exhibits and fun things to do. It is an invitation only kind of thing so there will not be a ton of people there. Please pray that Katie is feeling good and can really enjoy herself. Keep the prayers coming because they are working! =)

Goodbye May...and Good Riddance!

Hello June! Hope you prove to be a better month than May was. Katie has been in pain the entire month of May and continues to be so. She was unable to urinate completely on Thursday night/Friday morning (she could urinate some but was unable to completely empty her bladder and it was painful for her...by Friday morning her belly was swelling again.) At first they told us that we would have to begin straight cathing her (put it in, drain her bladder, and take it out...repeat in 4-6 hours). Even Dr. Russell came by and confirmed this. About 2 hours later the urology nurse came up and told us that her boss did NOT think that straight cathing was necessary and we could put the Foley back in even though she had a pretty nasty urinary tract infection. I was very very very ticked off! I was glad that we were not going to have to straight cath her BUT couldn't they have gotten their story straight before coming to talk to me AND making me wait and worrying for TWO hours. We were lucky that Becky Elbel came by to give Katie a present. Becky was kind enough to take Laura Beth with her since Laura Beth was having a hard time being at TCH and it was going to get kind of crazy with the Foley getting put back in. THANKS BECKY.

The weekend was tolerable. Katie continued to have pain, diarrhea, and to be hard to be around. I understand why she is being rude but it is still hard to deal with...This month has been the hardest we have had to endure...I think it has been harder to deal with than the whole previous year put together. We are tired...Katie is tired and it is very hard to deal with her pain. Please continue to pray for us. In our heads we know that God has a plan for our family and in our heads we know that he is a loving God who takes care of us at all times BUT in our hearts we are wondering about it all...at times it is hard to believe in God when your precious first born child, who you wanted for so long, in so much pain. Again thanks for holding us up in prayer...it is the most important thing you can do for us.