L...O...N...G... Day

Like Tuesday...today we spend ALL day at TCH. It is crazy that the Methodist hospital can push 100 cc of fluid in her in about 3 minutes while TCH takes TWO hours to do the same amount...Anyway...Katie has a urinary tract infection from having a Foley (probably bacteria from her diarrhea). They gave her some IV medication today, took out the Foley, pumped her full of some fluid and NOW it is just hurry up and wait for her to urinate. Hopefully she will be able to urinate on her own sometime tonight. If not we have to go back to TCH tomorrow (and I am sure spend the day! grrr...and I had just made a massage appointment for myself for tomorrow afternoon!)

On to better news....William and Laura Beth are coming in tonight. I am so excited to see my monkey again! I don't talk about Laura Beth enough on the blog but you should know she is a wonderful little girl who is almost two years old... she has endured so much while in the background...

Hopefully (keep your fingers crossed) we will get to go home tomorrow and spend the weekend there. I think it will do good for Katie. Also I signed up to work as a contract therapist with BVRC again! I am very excited. I loved my job there and know that I will enjoy it again. I will also continue working for Coker Rehab (the company that I have been working with for about six months doing home health, ECI, and the Madisonville schools). They have been wonderfully flexible and an absolutely wonderful company to work with! Strangely I will be working with COTAs (certified occupational therapy assistants) who are named Jennifer in BOTH places! The good thing for me is that I love them both to pieces! They are wonderful!

Also in in the good news venue is that Katie is eating more! She is still in pain and needs the morphine about every 4 hours as scheduled BUT she is eating more and that is a good sign!

Prayer for today: Katie can urinate without pain tonight!

Better Day...

Today was a better day...though a little frustrating! LOL Katie woke me up around 4 and said that she couldn't sleep by herself anymore! So I crawled in her bed and held her as we slept...it was precious. What was NOT so precious was when she woke me up at 6 (an hour before the alarm) to let me know she just couldn't sleep any longer! I guess sleeping for 3 weeks straight finally caught her up in the sleep department! Wish I could catch up on sleep. LOL When I did get up around 7 she was hungry and despite the fact that I should not have given her anything due to sedation I gave her some dry cereal. It was the first time she has wanted breakfast. They decided that they will radiate her leg. She was not very happy, though, when she woke up and had markings on her leg...she has pretty much gotten over it. She has eaten more today and is asking for food so that is a good sign. She continues to be pretty cranky but she hasn't needed as much pain medication and has had fewer episodes of diarrhea. So all in all it is an okay day. Today, I have been able to take a nap and read some (Glass Girl is a wonderful book! It is written by Laura Anderson Kurk who is a friend of a friend. She is an amazing writer!). I also get to have a strawberry smoothie every day when at the Methodist Hospital (makes for a great breakfast!) And today I got a free chair massage! Mix that in with the Dr. Pibb for lunch and you have a pretty good day....if you take away Katie's crankiness it would have been wonderful! =)

Bad Day...

Today has been a very bad day for me. We got to the Methodist hospital around 7:30 and were headed to Texas Children's by 9 for our clinic appointment. The main discussion revolved around pain management. It was difficult to decide which medication was best for Katie and what to do. I don't like seeing her in pain and I don't like seeing her a zombie but there doesn't seem to be a middle ground. Never really thought I would have to decide which narcotic was best for my child. William is ready to give up on morphine and just give her Tylenol for the pain. It was difficult to text him (didn't want to discuss it in front of Katie so that is the best way..) and get him to understand what was going on. I was very tired by the time we left at 5! They put her on TPN (IV nutrition) to prevent dehydration and hopefully make her feel better. The home health company couldn't get the TPN to me today so we stayed for TWO hours to get 100 cc of fluid in her to hold her off till tomorrow. The good side today is that Katie has eaten more and she is trying to get to the potty in time to have her diarrhea. She even laid in bed and watched Ice Age and was laughing today. However, Katie did get awful mad when I wanted to read a book with a 15 watt bulb on when she wanted to sleep. (I need to invest in a good book light). I became very frustrated with her and yelled...I should not have but I am past the point of breaking....The other good news is that they will probably radiate her left knee and possibly her left fibula. They are beginning to think her pain is coming from the cancer in that area and not from compression of the nerve to the left leg. On Thursday they are going to remove the Foley while she is sedated and then we are going to spend the day in clinic trying to get her to urinate and also get platelets (her platelet count was low today). If she can urinate on her own then the Foley will stay out...if she can't then it will be put back in for a little longer.

Pray for today: Katie to be able to urinate easily on Thursday and peace for my mind....I no longer have patience with any thing or any one.

Happy Anniversary!

Today is William and my 7th wedding anniversary. It is bittersweet to be apart today but I am happy that I have shared these past 7 years with my wonderful husband. Last year we celebrated together but it was in the hospital for Katie's first chemo treatment. I thank God that we are at least NOT in the hospital...at least not yet. Katie has not been drinking very much today. She is beginning to become dehydrated again. We will have an office visit with the nurse practitioner tomorrow and I am hoping to get them to put her on IV fluids so that we can prevent going back in the hospital. She is tolerating radiation okay...I am hoping soon that she will be able to do it without sedation. She continues to spend 95% of her time in bed but she is staying awake more and her diarrhea is getting some better. I try to get her up to walk a couple of times during the day, much to her disapproval.

Prayer request for today: That Katie does NOT become dehydrated!

Update

Karla brought Laura Beth to see us today. (THANK YOU SO MUCH AUNT KARLA!!!) Katie wasn't really feeling up to it but she sat in the stroller downstairs while I played with my little monkey. William, Laura Beth, and Karla went home while Katie and I stayed at the Ronald McDonald house. I was so sad to see half of my family leave...but I know it is for the best. I can't take care of both girls right now by myself and William has to work (Katie is very needy right now with her pain and diarrhea and Laura Beth is one busy little monkey!). We will probably spend most of the week (if not all of it) here in Houston. IF Katie gets to feeling a little better we may come home some of it. IF not then William will bring Laura Beth and they will spend the weekend with us. Other than having radiation every day we will not have to much to do. Hopefully Katie will get to feeling better soon and maybe we can make a trip to the zoo. Please pray for Katie's pain and diarrhea to subside. Thanks for keeping up with us and praying for us!

Free at last

Hey everyone this is William, just wanted to let all of you know that we are out of the hospital and in the Ronald McDonald house in Houston. Christa and Katie will be staying here the next ten days or so while Katie is receiving radiation treatments. We are excited about being out of the hospital. Katie is asleep in her bed and is not complaining of any pain. Katie is however on morphine, but it is as needed and not constant like it was before. We want to thank all of you so much for the time you spent on your knees on our behalf. Prayers do work and if anybody says that they don't then I will call them a liar. Thanks again and God bless each of you.

Freedom!

"There is no one like the God of Israel. He rides across the heavens to help you, across the skies in majestic splendor. The eternal God is your refuge, and his everlasting arms are under you." ---Deuteronomy 33:26-27 NLT

The past two weeks have been very difficult for William and I. To be honest, this week we have felt that Katie was the closest to death than she has ever been. She probably was closer at other times but due to the pain and fatigue that she has had this week we felt death could be imminent. And I think she felt it too. We, both, have been in tears dozes of times this week. BUT we have felt all of your prayers. We have felt the 'everlasting arms' of God around us. Even in the midst of sheer terror and sadness we have felt peace at times. Katie is beginning to feel much better. I think the first dose of radiation is beginning to make some difference and we have found the right dose of morphine. We even had her up walking this morning twice...of course she was yelling the whole way (not because she was in pain but because she was ticked that we are making her walk). Of course the OT in me had to have her get up and moving...She is sleeping now from sheer exhaustion. Her body is very tired but I am beginning to see her feisty spirit come back. We are going to get to leave the hospital tonight after her last dose of chemo for this round. We will stay in the Ronald McDonald house nearby. She will have 10 doses of radiation (until June 4th). I am hoping that after a couple of doses that she can once again do it without sedation. She will have the Foley catheter in until Tuesday. On Tuesday they will take the Foley out and see if she can urinate on her own. If she can then we will leave it out...if she can't then we will have it put back in for a little longer.

That is about all the news right now. I am looking forward to seeing my little monkey tomorrow (Laura Beth)! I miss her so much when I am here with Katie in the hospital. I know that she is well taken care of when I am gone BUT I miss her! She is growing so much...my little monkey is such a busy girl!

Thank you for all of your prayers. Several times during this ordeal, William and I just can't find the words to pray...and your prayers hold us up. THANKS! You are the warriors on our side!

"Elisha told him. 'For there are more on our side than on theirs.' Then Elisha prayed, 'O Lord, open his eyes and let him see.' The Lord opened his servant's eyes, and when he looked up, he saw that the hillside around Elisha was filled with horses and chariots of fire." --2 Kings 6:15-17 NLT

Update

Please pray for us. I was trying to encourage Katie today and she told me, "I have given up. This cancer is too big for us to kill." My heart broke into a million pieces. My little girl is so tired and in so much pain. She got her first dose of radiation today and our wonderful nurse Judy got her a morphine pump. We are hoping to figure out how to get out of this place today. We will get ALOT more sleep at the Ronald McDonald house. Thank you for your prayers.

MRI Results

Our suspicions were correct. Katie's tumor is pushing on the nerves that would allow her urinate. It is also very close to her sciatic nerve which would cause her L leg pain. There is also a possibility that it may cause some problems with pooping. They are restarting her chemo today. We also will meet with the radiologist today to begin radiation. I will have to learn how to in/out catheterize her until she is able to pee on her own. Thank you for your prayers. Please continue to pray for all of our emotional health as well as Katie's complete healing here on this earth.

Relief FINALLY

Katie and I had a very rough night. I don't think I got more than a hour of sleep at a time all night. Her poor belly was so distended. The did an in/out cath and was able to get about 250 ccs of urine out. And she went once in the middle of the night about 200 ccs. Normal for her is about 200 ccs at a time. I asked for a stay in Foley catheter but the doctors refused at this time. She had her MRI this morning at 6:30. It took 2 1/2 hours to complete. While in the MRI they decided to put a Foley in. PRAISE GOD!!! Just in recovery she had almost 800 ccs of urine come out of her! No wonder why my poor baby hurt. She is very groggy and still has some pain but she is not complaining of her leg hurting anymore. I had to tell a little white lie to get her to calm down...she was freaking out about having a catheter so I told her that I took it out. She calmed down some. Thank you for your prayers...they are working! I will update once we have the results of the MRI.

Hospital Again...

Katie continued to have fever and diarrhea through the night and this morning. They admitted her this afternoon due to dehydration. They have been pumping her full of fluids and she has not been able to urinate. They are fixing to do an in and out catheter. Please pray that this goes well. Her little belly is VERY distended. She is in a lot of pain and the morphine doesn't seem to be helping as well as it use to. Her chemo was put on hold for today due to the complications that she is having, but they should start it back up tomorrow. She will still have her MRI in the morning. Please pray for my poor baby's emotions...this morning she told me "I have too much cancer to handle." Please pray that she can feel better all over. Thank you for your prayers... And thank God for the small miracles...we were able to get into a room in about an hour, catching the elevators without having to wait and my parents coming so that I could get everything hauled over to the hospital from the Ronald McDonald house.

Day 2 of Chemotherapy

Day 2 is completed...Katie is now resting peacefully in her bed at the Ronald McDonald House. Dr. Russell seems to think that the fever is a result of the tumor and the body's reaction to it BUT they took cultures just to make sure. They also gave her an IV medication that treats staph positive bacteria (the vancomycin is for staph positive). Hopefully this will cover all the bases as far as bacteria goes. They also did a chest x-ray to rule out pneumonia (which they did...she is negative for pneumonia). All Katie has done all day is sleep. And she has even been polite to all the nurses and doctors who have come in to look at her or mess with her which wakes her up. If you know my daughter at all, you know this is NOT her...she is polite but only to a point! LOL My poor little girl is so tired and doesn't feel good. She has begun to have diarrhea and gas. I am giving her medication to help with both. She has not eaten anything since yesterday (Monday) at about 3 in the afternoon. She is drinking some though. Please pray that we can get this figured out and get back to living life while she can. Thank you for your prayers.

**Side note: MRI is scheduled for Thursday at 6 in the morning! Katie will be sedated for this procedure so that they can get a good picture and she will not be traumatized by having to hold still for an hour and half (that is how long the scheduler told me it would take!)

Chemotherapy

Yesterday we met with Dr. Russell and her nurse practitioner. They are thinking that Katie's difficulty with urinating may be due to the tumor in her pelvic region pressing on a nerve. We are trying to get a MRI scheduled for this week to confirm this. Also Katie is having significant pain in her left knee. We got a new prescription for morphine. This helps Katie but it also knocks her out. She is sleeping about 80% of the time. She spiked a fever last night. Dr. Russell thinks that it is probably related to the tumor and it does not look like she will be admitted (thank goodness). We will stay at the Ronald McDonald house tonight so that we will be close to the hospital. Katie handled the chemotherapy pretty good yesterday. The oral was difficult to get down her but it was doable. She hasn't had any real side effects from it. Please pray that they can find the reason for her pain and difficulty with urination AND that they will be able to fix it. My poor girl is so sick...and it hurts that just a week or so ago she was living life to the fullest. Thank you for your prayers.

Home

Katie was released from the hospital this afternoon. She is having a very rough time emotionally. She just wants to lay in bed and sleep. She continues to have difficulty urinating and has started to have an allergic reaction to the vancomycin (severe itching on her bottom). We have begun to give her Benadryl to counteract the allergic reaction.

Tomorrow, Katie and I will head to Houston. Please pray for us because I already know that it is going to be a difficult day...a day at the clinic is never fun but there is also some logistics that will be difficult to navigate. Also please pray for Katie because she has begun to have the same symptoms that she had a year ago...she is very whiny, is complaining of leg pain, and is having trouble walking at times. We are going to request an MRI of her spine and brain to make sure that we have covered all the bases. The MIBG and CT scan did not show that the tumor is wrapped around anything or pressing on anything but her behavior is telling me that something is going on. Thank you for your prayers.

Christa,

This is a special blog just for you. I want to thank you for being so strong throughout this past year. Many people dont know the extent of the sacrifices you made. I however do. You have been so wonderful through Katies illness. I want everyone to know what you have given up. Christa has a Bachelor of Science degree from ETBU. After she finished achieving that goal she went on to earn a Masters degree in Occupational Therapy. She loves her career, but she loves her family more. This is shown through the devotion to Katie. Christa doesnt get to use her talents as an OT as much as she would like, due to having to drop everything and take care of Katie such as going to Houston because of an infection, or the multiple appointments. Christa has also lost valuable time with our other daughter Laura Beth. Christa is constantly torn between the two of them. She wants to be with them both, but it is not possible. Christa has lost many an hour of sleep over her family. Christa has always been selfless, always putting other people first, this is one reason I love her so much. Christa has cried in my arms for hours over some of the stuff she has had to do to Katie. You dont know what your made of as a parent until you have physically had to hold your child down to force chemo down her throat, all the while Katie is screaming no no no and stop it please, it is as if you violateing her. I can tell you its not easy But Christa does it with grace. She is always strong for Katies sake. Christa is a beautiful Woman inside and out and deserves to lifted up on a pedastool. I want her to know how much I love and appreciate and respect her. She is the best wife a man could ever ask for and the best mom a child could ever be given. I heard it said somewhere that God gives a child the parent that he or she needs. This has never been more true in Katies and Laura Beths case, God really knew as he always does exactly what he was doing. This also proves the verse in the Bible that says before you were in the womb I knew you. Christa, you are a mother among mothers. Katie, Laura Beth and I are very blessed to have you in our lives. God loves you and he will see you through this. Stay strong my love. Thank you for being so awesome and for marrying me and sticking with me. Have a great day my love.



Love,
William

Hello everyone,

This is William and I just wanted to let everyone know that Katie and I are still in the hospital. Hopefully tomorrow morning we will get to leave, although we are not getting our hopes up because we have already been told this twice. I ask all of you to please put Katies emotional needs at the top of your prayer list. She desperately wants to go home, and she thought she was gonna get to go twice now. It is very difficult to say if she really feels bad or if she is so depressed that its making her feel worse than she actually does. I have tried to cheer her up, but she just doesn't seem to want to cheer up. I am worried about her because she is not acting like herself. She is acting like she was about a year ago before all this mess started. Katie is exhausted and she can't get any rest in this place. Please pray also that we can leave tomorrow in timely manner. I want to thank all of you for all the prayers, thoughts, gifts, and all the love that has been given to my family and I. This has been a very difficult year for us, but all the love and kindness that has been shown to us has made it easier. I don't know how people who do not have the God of heaven in there lives make it through this, because Christa and I are both saved and struggle everyday with the trials and tribulations of this dreaded disease. I see muslims on the cancer floor and wonder how they do it, because there god is not alive and can't fix anything. I am thankful to God for our family. Our family has been so wonderful to us, they have all sacrificed a lot to make sure we have everything we need. Our family has been there when we needed a shoulder to cry on and they have been there for rejoicing as well. I am also thankful for our church. Harmony Baptist church may be small in number, but it is big in love. Christa and I want our church to know how much we love each and every member. I am thankful for the friends and the strangers who have shown us support this past year. God gave each and everyone of us who believe in him faith, hope and love and the greatest of these is love. This scripture has been proven to me over and over again this past year, and it has been proven through each and everyone of you. Thank you and God bless you for everything.

PICC line placement

Katie had her PICC line placed this morning after much confusion and difficulty. They originally had her scheduled for nurse sedation. I had told them yesterday that the medication used with nurse sedation did NOT work because it causes her to RAGE for over an hour. So we were once again brought back to our room to wait and Katie still was not able to eat. After much 'discussion' we were scheduled for the procedure with general anesthesia. Katie is now finished with the surgery and we are back in our room with daddy and Laura Beth here. Katie is feeling some better. Thank you for all of your prayers.

Fever Update

Katie made it through the night without any fevers and without any more Tylenol! Thank you Lord! God heard your prayers and answered them. Thank you to everyone who prayed for Katie. She slept most of the afternoon and through the night okay. She woke up every couple of hours to go to the bathroom (still having diarrhea) but other than that she slept. We are now waiting for the PIC line placement. She is supposedly the first case and should to at 8...I hope. Thank you to everyone for all of your prayers...

A Year....

"The Lord who created you says: 'Do not be afraid, for I have ransomed you. I have called you by name; you are mine. When you go through deep waters and great trouble, I will be with you.'" --Isaiah 43:1-2 NLT

Today, May 14th, marks one year since we were told the news that Katie has cancer. One year ago today, I lay in a hospital bed with my scared little girl beside me and heard the news... Stage 4 High Risk Neuroblastoma. That is a lot to take in...I remember that Katie wouldn't let me leave the room...she was in so much pain and so very scared. A lot has changed in the past year...and a lot has stayed the same. It has flown by so fast...it is all a blur, yet it feels like it has been five years instead of one!

I sit here wondering, "what have you learned from all this...what has the point in this last year been?" Well I have learned a few things...

1. Money does NOT matter. I have always been somewhat focused on money. Now I know God will take care of the finances...the generosity of our community has been overwhelming. Also, I would recommend to ANYONE that they should get an AFLAC cancer policy. God definitely had a hand in me signing us up for that. Because of your generosity and AFLAC I have not had to worry about not being able to work...instead William and I have been able to focus on our family and how to get us through this.

2. Worrying over little things does not matter. When I look back on what I disciplined my daughters for before cancer I laugh. Really did it matter that my 1 year old couldn't be quiet in church? For goodness sakes why did I even try? Did it matter if she got her clothes all dirty while playing? Nope. Why oh why did I let those little things get to me. Sometimes I think that maybe the purpose for all of this is to remind me that my daughters are a precious gift from God and I should NEVER take them for granted.

3. Rejoicing in the little things DOES matter. What matters most is that my 4 year old and 1 year old get to play together...yell at each other and fight with one another. What matters is that my daughters get to laugh together. What matters is that Katie gets to plant a garden or take a bath and that I get to be there for all of it...that is what matters.

4. Family and friends are important...We are so grateful for our families (parents and siblings, as well as extended family) because they have really stepped up to the plate to help us. Each family member has really done their part in helping us get through this year. In addition to our family we have been blessed by wonderful friends and an awesome church family who have prayed for us, provided us with meals, given the girls' gifts and gave us a shoulder to lean on. We appreciate all of you so much!

5. God will carry us through this. Oh don’t get me wrong…there are many times that William and I have not been able to see God in all of this. But when I look back I can see that He was always there taking care of us. Many times I have felt that God was far away…but in my heart I know that He is taking care of my little girls. I still struggle with the ‘why’ of it all. I see people every day that do not care about their children or who abuse them…and I think why can't that child have cancer instead of Katie? But I know that God’s will will prevail. It is just hard to accept it at times.

When I look back over this year I see some great accomplishments...and some great sadness. Katie has been through so much...She has had 11 surgeries (that doesn't count bone marrow biopsies), 9 rounds of chemotherapy, 12 days of radiation, approximately 90 days in the hospital, and she has undergone NUMEROUS tests. And through it all she has been so brave...sometimes it is hard to remember that she is only 4 years old. Especially with the vocabulary that she has! I am saddened by what I have lost this past year...I lost a great deal of time seeing my little 10 month old grow into a 22 month old. And I missed getting to see what a normal 3 & 4 year old Katie would have been like. And my girls missed getting to grow up together a lot of this past year. I am also saddened by what I have gained....I have gained the ability to think about death...Before May 14, 2009 I would have never dreamed of thinking about the death of my daughter. I would not have had to wonder if I should bury my little girl with her white blanket and Jessy doll (they go everywhere with her) or if I should keep them so that I have something to hold onto while I grieve for her. I would have never wondered who my youngest would look up to if her sister wasn't there. Laura Beth wants so very much to be just as 'big' as her sister and do all the things that Katie can do. When I see them walking together hand in hand or playing together...even fighting together, I now think...this could be the last time. Oh I have hope that God will heal Katie. William and I have been fighting for her healing all year BUT there comes a time when you have to come to grips with the fact that her healing on this earth just might not be in God's will. And that makes me angry...I see how much she loves to learn and how much joy she gets in learning about God that I just can't imagine how it would do anyone any good for her to not get to grown up. It is very hard to let go of the dreams and hopes I have for her...I want to see her grow up, I want to fight with her when she is a teenager, I want to worry about her when she is on a date, I want to be there to talk with her about her first kiss, I want to be there for her graduation, her marriage, and the birth of her children. I WANT to see her grow up....But for now I just hold onto the hope that we can make it another year...

Fever...

Katie spiked a fever of a 101 about six tonight. They did a blood culture (fresh stick/poke) and are ordering a urine culture. We also changed the dressing on the site where her port was removed. As you can imagine, she was VERY upset. She is also having very urgent (RIGHT NOW) bowel movements. This is most likely due to the antibiotics but I am not sure. Her blood pressure was okay but her heart rate was high when they checked it earlier. I am praying that her infection has not gone septic (all over her body).

Prayer request for today: Katie's fever goes away and we get to go home tomorrow.