Life...

Today Katie has slept most of the day...she is having a lot of trouble urinating and is beginning to have spontaneous bleeding near sites of her cancer that we can see. We put in a Foley tonight to lessen some of her pain (it hurts for her to push to urinate). However, she continues to not complain or ask for anything. My precious daughter will most likely not be with us by the end of this coming week. Please pray for peace and that both William and I will be with her when she leaves this Earth.

Today, my sister Ashley and I had a 'girl day' together. We ate out, saw a movie, and got our nails done! We had a lot of fun. I recommend the movie, Romona & Beezus to anyone with girls. It was very similar to the Romona books that I loved when I was younger. I am glad that we got to spend the day together and have some fun.

Thank you for keeping up with us and mostly for praying for us. The following is the lyrics from a song that a friend sent to me today...it reminds me of what I have been feeling...please forgive me if it is not word for word; I was typing what I heard...

"No Matter What"
by Kerrie Roberts

I'm running back to your promises one more time
Lord that is all I can hold onto
I gotta say this has taken me by surprise
But nothing surprises you
Before a heartache can ever touch my life it has to go through your hands
and even though I keep asking why
I keep asking why
No matter what I'm going to love you
No matter what I'm going to need you
I know that you can find a way to keep me from the pain but if not,
if not I'll trust you
No matter what, no matter what
When I'm stuck and there's nothing else by myself
I'm just sitting there in silence, there's no way I can make it without your help,
I won't even try it
I know you have your reasons for everything
So I will keep believing no matter what I might be feeling
God you are my hope and you will be my strength
No matter what I'm going to love you
No matter what I'm going to need you
I know you can that find a way to keep me from the pain but if not,
if not I'll trust you
No matter what, no matter what
Anything I don't have you can give it to me
But it is okay if you don't
I'm not here for those things
The touch of your love is enough on its own
No matter what I still love you and I'm going to need you
I know you can find a way to keep me from the pain but if not,
if not I'll trust you
No matter what, no matter what

Forgetting...

One night when Katie was angry and we were talking about Heaven she told me, "You'll forget me." Of course this is not true and I tried to let her know that; but in a sense she might be right. I am scared of forgetting the little things, like where all her little freckles are, how beautiful her laugh is, her cute little sayings, and all the little memories. I have always joked that Katie is my memory. My little 4 year old remembers EVERYTHING! I always know if I don't remember something she will. There are, however, a lot of things that I can never forget about her. She loves singing, dancing, giving hugs and going to Sunday school with Ms. Sharon and Miss Joan. The thing that I will never forget about her is, her ability to make me laugh no matter what the circumstances are. They say the eyes are the window to the soul, and Katie has the most beautiful eyes on the face of the planet, no wonder God wants her back, she is beautiful. Forget her.... NEVER, she is and always will be unforgetable.

Today was a hard day. It was hard because she has not been alert very much today, which is bad because the doctor says as it gets closer to her time to go that she will be less and less responsive. Katie's back was very swollen today which caused her severe pain. I had to cath her twice today to give her some relief and even then it didn't help much. We believe her suffering will be coming to an end very soon. The reality of this is bittersweet. Katie is very tired and is ready to be out of pain. Katie seems to have a peace that is unmatched to anything I have ever seen. I truly believe that Jesus Christ himself is with her and is comforting her about what is about to take place. Thank you to everyone again for the prayers. May we all find the peace that God has given Katie. I pray we can all have the child like faith to follow whole heartedly after Jesus Christ and trust Him with our entire lives.

Suffering

"What we suffer now is nothing compared to the glory he will give us later. For all creation is waiting eagerly for that future day when God will reveal who his children really are. Against its will, everything on earth was subjected to God's curse. All creation anticipates the day when it will join God's children in glorious freedom from death and decay. For we know that all creation has been groaning as in the pains of childbirth right up to the present time. And even we Christians, although we have the Holy Spirit within us as a foretaste of future glory, also groan to be released from pain and suffering. We, too, wait anxiously for that day when God will give us our full rights as his children, including the new bodies he has promised us. Now that we are saved, we eagerly look forward to this freedom. For if you already have something, you don't need to hope for it. But if we look forward to something we don't have yet, we must wait patiently and confidently."
Romans 8:18-25 NLT

The above verse gives me comfort. I know that although this journey that we are on is a very difficult one AND definitely not one that I would have chosen, that in the end the glory and joy will be so much greater than the pain we feel now. This does not mean that I am not angry, sad, and very upset with God. In fact, I spend most nights crying and begging with God to end my child's suffering. I do not understand why we have to see our beautiful, smart, loving, kind daughter suffer so much and die in so much pain. But I know that God has a plan and a purpose for my daughter as well as each one of us. I follow many other blogs written by parents of children with cancer and there are a few that express how they have given up on God. I completely and totally understand why they have done this. Seeing your child suffer in the ways that you have to when trying to save their life and then ultimately in the end as they die...well it just isn't right. It makes you question your faith and your devotion to the Lord. BUT as the bible says, 'train up a child in the way they should go and they will not part from it' (sorry that I don't know the verse for that...I am paraphrasing what I remember). I was brought up to believe in the Lord and His perfect ways...and as much as I would like to give into the anger and the bitterness I know that I cannot. I know in my heart that the Lord is righteous and that he has something better for my little one. I still do not understand but I am glad fthat William and I were brought up to believe in Jesus as our Savior because though it would be easier, in some ways, to turn our back on God, I know that in reality it is better to trust in him and take comfort from One whose peace passes all understanding. Thank you for your prayers.

A Blessing & A Curse...

Each day is both a blessing & a curse...it is a blessing to have another day with Katie...another day that we can hug her, kiss her, hear her precious voice and take care of her. It is a curse because it is another day that we have to see her in pain, another day to see her slip away a little more. We are ready for her to not be in pain anymore. We wish it didn't have to be this way, but at the same time we know death is the only way that this can happen for her. We get comfort from knowing that Katie will not have to deal with the evils of this world any longer, and that is worth a lot. This world is only getting worse every day and is not going to get better. We do pray though that God will not tarry the rapture of His church. People often say they want to go to Heaven but they don't want to go tonight, I say why not? People believe in Heaven but they are in no hurry to go, I don't understand this. I think its because they have not lost anyone close to them such as a child. We have not lost our child yet, but it is inevitable. I know that we are not supposed to want to go to Heaven for this reason, but as humans I believe we think like that sometimes. We are supposed to want to go to Heaven to eternally praise our Lord and Saviour. I will stop preaching now cause that is my Dad's job. Thanks for all the prayers and kind words you all have spoken on Katie's behalf. Have a glorious night and God bless.

Update....

Today at 6:13 p.m. Laura Beth pooped in the potty for the first time ever! We are so proud of her. She has tee-tee'ed in the potty 3 or 4 times in the last week but never pooped! Using the potty is probably the last thing that her sister will ever teach her.

Katie continues to get a little worse every day. However, today her swelling has gone down. She spent the day at Aunt Karla's having a slumber party while we went to church and then took a nap. From what she said, she had a lot of fun. We want to thank you for your prayers and concern for us. We appreciate every prayer we can get. We know that even though we don't understand why we are having to go through the pain of seeing our daughter suffer and die that God does. We also know that God does all things to work for his glory. Again thank you for everything that you have done for us and continue to do for us.

Here are a couple of pictures from the past day or two.

Here is Laura Beth in her 'little' pool. Her aunt got it for her for her birthday. She nows has a play house, a pool, and some patio furniture!

My sister, Ashley, and Laura Beth

A picture of Katie. You can really see how this horrible disease has wrecked havoc on her little body. She has absolutely NO fat on her body. Her skin just hangs on her bones. She has tumors on her head, her neck, her belly, and her legs. Her bones ache, her tummy hurts, and her throat hurts. She is so tired that most of the day is spent sitting up on the couch with her eyes closed. She doesn't want to go to bed...she is fighting to be as normal as her little body will let her. It is so hard to see her like this.

PARTY

Yesterday we had Laura Beth's 2nd Birthday party. She had a BLAST!!! Unfortunately, Katie didn't feel well and spent the entire time sleeping. Katie had really wanted Laura Beth to have a monkey birthday party with a monkey cake that tasted like bananas. We were not able to find a cake like this...BUT our wonderful hospice nurse, Angela, WAS able to. She contacted Sweet Memories who created us an awesome cake that tasted wonderful for free! I am amazed at wonderful things that are happening in the midst of our disaster. It is like seeing a rainbow in the middle of a hurricane!

Anyway...here are some pictures of the day. Thank you to everyone who sent Laura Beth birthday wishes. And thank you to all of our family that helped pull this party together and made it a wonderful memory for us.

Me & the Monkey!

The cake we got for Katie

The Famous Monkey Cake!

Laura Beth trying to get the monkey off the cake...

thank goodness grandma stopped her just in time!

Loving every minute of it!

Blowing out the candles

" FINALLY I get to eat this monkey!"

Opening Presents!

The first one that she opened...a doll from her cousin Brandon.

She did NOT want to put it down to open more! But eventually she was convinced to!

Laura Beth with her Princess Patio set that Angela got her!

Thank you to our hospice nurses who are so wonderful!

Laura Beth loving on her sister before going to bed.

Happy 2nd Birthday Laura Beth!

Happy Birthday to our funny Monkey! It is amazing that you are already two...you are so special to all of us. You are the one who can make us laugh and smile even when we don't want to. Through this past 14 months you have been quite a trooper. Your easy going attitude and ability to go with anyone has been a true blessing. You are wonderful monkey! I pray that you know how much everyone, including your sister, loves you!

The following are pictures of Laura Beth's big present. Thank you to Brian who spent last Saturday building this playhouse with my wonderful husband. When Laura Beth saw it all she kept saying was "Mine...Mine...Mine!!" She loves her present.

I'll post pictures of her party after we have it tomorrow!

More of the same....

Today Katie and I slept to noon with a few interruptions. I guess that we must have needed it. We spent the rest of the day down at my mother-in-law's house visiting with the girls' great-grandparents. It saddened me to see the pain in great-grandma and great-grandpa's eyes. They love all of their great-grandchildren and it is hurting them so much to loose Katie. William and I HATE how much this is hurting everyone...not just us. We just pray that every time you get mad at one of your children or are frustrated with them that you remember our daughter and give them a hug. Enjoy every minute with your children...they are a gift from God. Thank you for following our journey.

Bad days continue....

Today has not been a good day today for Katie. She woke up with increased pain. After talking with our hospice nurses, we decided to go up on her pain medication. She & I slept for about 4 hours this afternoon and woke up feeling some better. Lately I haven't been able to sleep much at night. Night time is when the waves of sadness over-take me. It is when I have to think about her funeral and how hard it is going to be with her dying so close to her sister's birthday...and the hole that is going to be left in our lives without her.

Please continue to pray that her pain will end...it appears that her kidneys have begun to shut down (decreased urine output with normal intake and swelling of the feet and abdomen). Thank you for all of your prayers and support.

Dying

Sorry that I have not posted in a couple of days...it is just so hard to sit down and write about what is going on with Katelyn and our family...

Every day Katelyn gets a little more tired and hurts a little more. As of today, she no longer will walk because her legs hurt too bad. She continues to eat fairly well but she also continues to have difficulty with pooping and peeing. Tonight her aunt Karla (a nurse) & I are going to try to cath her to see if we can relieve some of her discomfort. Her little belly continues to be swollen...it may be from not being able to go to the bathroom or it may be from some internal bleeding due to low platelets. But even through all this pain and fatigue she continues to attempt to do things she normally would do. She talks about wanting to bake a cake or pick some 4 o'clock glories (her name for them). She normally would love to go swimming every day and play outside but right now she can barely tolerate the heat when getting into the car to go somewhere (which we don't do very often due to her pain and needing to go to the bathroom about every 30 minutes...and she now sits on the potty about 20 minutes before she feels like she is done). It is so hard to see her this way...the other day I took her night gown off to change her into a new one and I was saddened by her little body. She looked like a little child who was going through the Holocaust...I could count every rib and see all of her little veins. Her belly was swollen and her arms and legs are like sticks. Her trunk is like a road map...you can see where all of her central lines were, where her port was and the long scar from her long surgery to remove her original tumor. It hurts to remember how much she has had to endure with the end result still being the same...DEATH. Yesterday while sitting on the potty we were talking and she said, "When I am in Heaven I will miss you mommy. Can you draw me a picture of us, Daddy, and Laura Beth so I can take it with me?" My heart broke...I told her in Heaven she won't be sad or hurt...but she insisted that she would miss us. Just one of the many things she has said that breaks my heart. She constantly tells me that "it isn't your fault that I am sick mommy" and "Don't be sad...I am okay". It isn't suppose to be this way...I am suppose to be comforting her...not the other way around....Please pray that the Lord either performs a miracle in Katie's life or that He takes her while she is sleeping. Either way....I just don't want her to hurt or suffer any more.

Laura Beth

In less than a week, Laura Beth will be TWO! It amazes me that she is growing so quickly. Because she rarely gets to spend time with just me, I took just her yesterday to Bryan to do some errands. We got her ears pierced while at the mall...she did wonderful! Only screamed for about 10 seconds and then she was happy again. Just like her sister did when we got her ears pierced. We also went by BVRC to drop off some stuff and she got to play some. She liked playing there better than the mall...of course while at BVRC she had the attention of all the therapists! =) Here are some pictures from the day.

Swinging on the Platform Swing

Little Learner

Ball Pit Fun

Ice cream truck at the mall
Taking orders for the ice cream truck! =)
Just got her ears pierced...poor little ears are so red...

and so is her face from eating a red lolly pop!

Showing off the new bling!

Cheesing for the camera!

Days...

Days seem to go by so fast...yet I am doing nothing. Sunday morning was really good for Katie. We went to church at Grandpa's church (Elwood Baptist Church where Grandpa is the pastor)...Katie's cousin, Logan, was baptised and Katie sung "Jesus Loves Me". It was so precious. Katie looked so tired and pale but she didn't want to go home...We ate, took some pictures, and then headed home after telling everyone bye and giving them a kiss. Katie slept the rest of the day. Monday, William stayed home and I went to work. It was nice to get away for a little while and pretend to be normal! Today, I am back home...My mom & sister have taken the little monkey to the park and to do some errands for me...THANKS. Thank you to everyone who has been keeping up with us...Keep the prayers coming...we need all the prayers we can get!

Thank You

William, Katie, Laura Beth, & I would like to say thank you to everyone who has provided us with meals, blankets, gifts for the girls, money, and so much more. We appreciate our family, church, and community so much for everything that you have done for us. We would like to say that during these last weeks with Katie, we would like to spend as much time as we can as a family. We know that all of you are concerned about us and would love nothing more to help us in this difficult time BUT the most important thing that you can do is to pray for us and let us spend time together without interruption. Katie is having such a difficult time with people coming over...she is so very tired from the cancer taking over her body, low blood counts, and pain medication. Again thank you so much for everything, we do appreciate your help and love...we just need this time with our girls while we have it.

A new normal...

Yesterday the hospice nurse and I decided to cut Katie's long lasting morphine in half. We decided to this because Katie has been so very tired. Also because she has been very constipated (hasn't had a bowel movement since Wednesday). Constipation is a normal side effect from narcotics. We are hoping this will help. Please pray that she can get some relief soon...her belly is beginning to get pretty swollen.

Today my grandparents from New Mexico were here. Katie was not feeling up to company too much but after some morphine and a little nap she was better. A big thanks to my mother-in-law for letting us all eat down at her house where there is more room! I am grateful that Katie got to see them one more time...more for their sake than hers. I am also grateful that because of everything that has been happening in Katie's life, my grandfather finally accepted Christ. I am glad that I can see something good coming out of this situation.

Also please pray for my little monkey, Laura Beth...she stepped on a wasp tonight and her little foot is swollen and red. After some numbing topical medicine, some hydrocortisone cream, and some benadryl she is feeling better...but her poor little foot still looks bad. Thank you for all of your prayers.

Bad Days...

Katie has had a very rough day...she has barely been able to keep her eyes open and she is so completely worn out. She has had one meltdown after another and she doesn't want me to be out of her sight for even a moment. It hurts to see her so upset and fearful. As hard as it was, I had to take a break today. I am thankful that my parents and sister were able to handle her meltdowns and get her to rest some. It is so hard to be the mother of a child who is so very ill AND the mother of an almost two year old who is as Katie calls her "a miss busy-body". I have to be strong all day and then I cry all night. Losing your baby is the hardest thing that God can ever ask of a person. From a mother's point of view....it is heart-wrenching. I carried this little life in me for 37 weeks...I nurtured her and was the vessel that God used to give her life. I felt her first movements, heard her first heartbeat, and heard her first cries. Katie was wanted for so long...I don't remember not wanting to be a mother. I know God gave me Laura Beth in order for me to be able to continue to be a mother...she is quite an amazing little girl...but that doesn't take away the fact that my cuddle-bug will be gone forever from me in this life. I only can hang on because I KNOW that she will be in Heaven...I know that she will have no more pain, no more sickness, and no more fears. And because I know that she will be there waiting for me when I also enter into Heaven. After seeing my Lord & Savior she will be the next person I find. The pain that I feel can not even be described in words....In losing her I am losing all of my dreams for her and all the memories that I will never make with her. In one way it makes it harder to have Laura Beth because every memory I make with her I will grieve for that same memory that I will never have with Katie. But the flip side is that I can go on BECAUSE I have my little monkey. She is my reason for continuing. Even though my heart is breaking...I am honored that the Lord choose us to take care of my sweet Katelyn Olivia even if it was just for a short while. He put her here for a purpose and that purpose is close to being fulfilled. I pray that we can all find peace in this difficult time. Thank you for everything you have done for us, but most importantly for the prayers. I don't know why God hasn't answered them in the way we would like for Him to but I do know that He can see the big picture and that His ways are perfect.

Princess Party Part 2

I just wanted to add that the girls' costumes and the gifts came from the Fairy Godmother Store at the mall in Bryan (where the princesses work). The Fairy Godmother Store offers princess parties, Mommy-Me Makeovers, gifts, costumes, jewelry, and accessories for every princess in your family.

I am amazed at all they brought for both Katie AND Laura Beth...we now have a Belle & Cinderella costumes, bottle cap necklaces, bracelets, and flower headbands. The princesses were so very sweet to come all the way to our house and play with the girls. They were just wonderful. I hope they know how much this meant not only to Katie but her friends as well. Thanks to the people who made this possible for us. More pictures to follow when Erica gets them to me =)

Princess Party

Today three lovely princess visited Katie and her two best friends, Zoey & Kate. Belle, Snow White & Cinderella came and spent 2 hours with the girls. They brought gifts, cookies to eat, and dress-up clothes for the girls. The princesses read stories, painted the girls nails, played Candy Land, and played with Barbie dolls. The girls had alot of fun. Although, Kate was very shy...she said that she had never seen real princesses before and they made her nervous! LOL Zoey assured her that it was okay because they came all the way from Disney World. =) Here are some pictures from the day. A big thank you to these sweet college girls who gave of their time to come and brighten the girls' day.

Also wanted to say thank you to everyone who has been cooking our meals this week. We appreciate it!

Daily Life

Nothing much new to report. We are just taking it day by day and minute by minute. Hospice came out yesterday to get things set up. Then today the regular nurses that will be seeing us came out. They have changed Katie's medication and hopefully that change will get her pain under control. So far, all of the nurses and social workers at Hospice Brazos Valley have been really wonderful. Her nurses tonight, even brought Katie some presents!
Katie continues to have pain and is a lot more fearful than she use to be. But I think that she has a peace about everything going on....she is just worried about us. She knows how much we will miss her and that worries her. But her poor little body is tired and so very sick. It is very hard for me, as a mother, to see her going through this. The bright news is that Laura Beth will be TWO years old in two weeks from today! We don't really have anything planned for a party but we will just be happy if Katie is here to enjoy it with us. Thank you to everyone for continuing to pray for us...we need it.

**Please pray that Katie has a wonderful day tomorrow with her two best friends. A friend has made it possible for some princesses to come over and have a party with Katie and her friends. I am just praying that Katie is feeling well enough to enjoy it.**

San Antonio part 4

We got up early this morning, packed and headed home. Katie is feeling better today. Every day is a new adventure with her. And every day I see her get a little weaker. It is hard but we are remaining strong for her. We all arrived safely home. After some BBQ (courtesy of Uncle Nap & Aunt Martha), and a nap we headed out to go fishing. Katie got hot very quickly due to the medicines she is on and due to her body's inability to regulate her temperature well (regulation of temperature is something that the adrenal glands do). She did catch a fish though! Then we went swimming which is always fun. The girls are both in bed now and I am going to head that way to. Please pray for us tomorrow...hospice is coming out to get everything set up. Thanks!

San Antonio part 3

Today we headed to Sea World. It was not a good day. Katie is very tired and doesn't feel good. She complained of her whole head hurting today. We are praying it is just from the heat but in reality it could be something Dr. Russell warned us of...that one of the tumors on her skull could have a blood vessel rupture. Even though Katie did not have a good time, she got some good souvenirs and Laura Beth had a BLAST. I think Laura Beth has found what she wants to be someday...a dolphin or whale trainer at Sea World. As soon as she saw the first show, she was trying to take off her shirt and saying "bath"! In the end, Katie did say that she liked the Killer whale show and the clown at the Beluga Whale show. When we got back to the hotel, Katie took a nap and Laura Beth and I headed to the pool. We went down the lazy river 5 times and played around in the pool. Laura Beth loved it. We are going to head home tomorrow. Katie just doesn't feel like doing anything else. Please pray for her...and us as we go through this. Thanks.