Hope, Faith, Comfort

Tonight I want to dedicate my post to a family on the ICS floor. There was a young woman that was fighting cancer and she lost her battle tonight. She has been in the hospital for well over 2 months and has been fighting an uphill battle the whole way. I don't know her family but I see her Mom come and go from her room all the time. I have only met her in passing but she seemed very nice and loving. There are a ton of nurses that are off today and heard what was happening and came in. They are all outside our room crying. Knowing the love they had for this girl makes me realize just how much being here is the best decision we could have made for Clay. I don't know how the nurses and staff on this floor do it. I cant imagine how they all feel right now. I know I am sad and my heart is heavy tonight, wow, the emotions the family must be feeling scares me to no end. I know the family is LDS so I know they know of the eternal plan but I also know and fear the pain they have and the heavy hearts they are all bearing right now. I pray for the girl and family I don't know in room 4404 tonight. I pray for hope faith and comfort for that family and all the families out there who have lost a child today. Peace be with you. Love Tabitha Clay is doing fabulous and tonight I am extra grateful to my heavenly father for his blessing on us.

Alecia, Alex, Tanner and Adele came to visit.

Stupid little pill

Stupid little pill

Today was awesome. Clay is improving so much every day. Today he decided he didn't want to take the medication he takes by mouth in liquid form anymore. He hates the flavor and the texture of the liquid. So we tried it and he was successful!!!! That is the first sign of healing. He jumped to the head of the class today. I am so proud of him and his willingness to try and move forward. The nurse and I just looked at him in awe and worry and he looked up after taking the pills and said what, that wasn't that hard. Are you kidding me, he is amazing. Day twelve and taking pills by mouth. I have to say it just one more time. AMAZING.

Alecia, Alex, Tanner and Adelle came to visit and Alex was kind enough to play video games with Clay so I could have dinner with grown ups. Clay was sad when Alex left, he said there was actually someone he could play really well with. I guess I cant play very well. The other person who came to visit was Uncle Dave, he was nice enough to free some work time to come play Halo with Clay even though he has never played before. Clay had fun but you could tell he was frustrated cuz he had to keep finding Dave on the Halo board. I think he is excited for Cole to come this weekend so he has some one to hang out with. I'm excited to see them all this weekend so I can hug the kids and kiss my hubby. Lily had a softball game and her team won again. Lily got up to bat twice and was waked both time, Lily walks alot because she is left handed. Hey what ever gets her on base so she can score. She played third and Tad said she did well but needs to remember to tag the runner. I miss seeing her games but know she has good friends to see her in my place. Cole plays tomorrow, cant wait to hear about that one.

Love to all and good night.

Tab and Clay

7 months

Clay and Emily

Uncle Dave is corrupting Clay. JK He wanted to wear his UofU hat like Dave.

Dave wanted to be like Clay and have no hair.

Clay was diagnosed seven months ago today, August 29, 2010. That was the day that changed our lives forever. Not just for the next year, but forever. While living with cancer Clay has become a much more mellower boy, more loving and patient. We hope it stays that way, I personally like the nice Clay and I know his teachers and coaches will too. All five of us have been reminded of the love we share for one another. I miss Tad and the kids and I get a phone call from Lily every day telling me she loves me and misses me. This is making me a better more attentive Mom who has to cook more often and I will try not to take that for granted any more. Not only has these last seven months changed our family of five it has also changed and brought together the rest of the families with in our family, as well as our ward, schools, and friends. It is amazing how many people love you and you don't even know it or you know and just forget. We have had people come out of the woodwork to express their concerns and love. And to all those out there, we love you too and are grateful for your prayers of hope and faith. Tad and I have faith and the knowledge of what the Lord has planned and we are ready to face what lies ahead. We just hope it is a healthy,, happy cancer free boy.

Today was a boring, simple, same as yesterday, day. That is what is best right now. When things get exciting that is when there are issues. I am bored out of my mind but I am content to be with my kiddo and keep him happy and entertained with painting, video games, board games, whatever. Clay got a letter from his pen pal Matthew today and his friend found out he loves Lego cars and had an extra one that some one gave him so he sent it with a note for Clay. So Clay sent him a Bionical. I like that the nurses encourage pen pals and making friends through the walls. Most of the kids can not leave the rooms and can not socialize with other kids. This is a good experience for Clay to know some one here and I think through mail and their blogs they can stay friends.

We had several visitors today. Uncle Dave came and brought me lunch. Grandma Daniels came to see how things are going. Grandma Nicki stopped by after work and got to see Erica our cousin as well. We also had another visit from another dog, Emily. We love love love when the dogs come to visit, they jump on the bed and Clay can love them and hug them and give them treats.

Thanks for all the visits, now go hug your kiddos really tight and then hug your spouse and tell them how much you love them.

Love to all,

Tab

Day +11 our 3 week anniv

today we celebrate our 3 weeks. We are half way there. The stay is typically 5-6 weeks. So if we are here the full 6 weeks then woo hoo. Half way point. How ever we are shooting for more like 5 weeks or less.

The Docs all say he is looking great and his blood work looks great. They upped his pain meds again. Clay now is feeling much better. Today was a normal regular old day. If that is possible. Clay took a 4 hour nap and was still asleep by 930. Its a good thing, that means his body is healing.

The picture above is one of Clays favorite techs, well, the girl techs anyway. Can anyone see why he likes her. First she is super cute and super nice. 2 she plays soccer. She is good about dragging him out of bed and making him kick the plush soccer ball around the room. They do tricks together. She is good for him and the scheduler seems to know that because we always get her when she is working.

Tad is doing a fabulous job running the Vegas part of our lives. I knew he would. He is getting homework done and kids to practices as well as dinner and playing outside. I am grateful he is there and holding down that end of our lives. They are all coming up this weekend and we cant wait to see them. I want to hug my Uly girl and my sweet Cole (I wont say his nickname, he would kill me). Earlier in the blog I posted about Cole's grades. Update is the end of the quarter was on Friday and I am proud to say he passed all but 2 of his classes with 3 B's and 1 C. He did fail two classes but I think he did great and I'm not worried about 2 classes. I am really proud of Cole for getting his work done and for Cole for busting his butt and getting all his stuff done and turned in. He is awesome and I love him.

Well, I am off to bed. Good night all and I love each and everyone of you.

Tab

The Real Day +10 half way there

Before

After

Some of the boys at church with their hair shaved.

We are half way to engrafment. Engrafment is when the white blood cells take over and start to work on their own. After we hit engrafment we should out of here about a week later.

Today was a great day. Clay has felt pretty good all day. The docs this morning upped his pain med dosage, Id be happier too. He was getting super sick and tired of his hair falling out and it was really itchy, so we shaved what was left. Afterwards he was able to take a bath, not a shower, a bath. That made him feel good and helped to renew his spirits and his energy. It is amazing what something as simple as a bath can do. Grandma Liz and Grandpa John came to visit today, it was nice to see some one besides us.

We received a letter today in the mail, my mom brought it to the hospital, from a really great friend. It was a picture of some of the boys from our ward who cut their hair for Clay. We hung it on the door as soon we he got it. I actually saw a smile. Yep that's right Clay smiled. That has been a thing that is far and few between. He has been doing good he just doesn't talk or smile. Talking hurts his throat and smiling hurts his lips and tongue. I was glad to get the letter to make Clay happy.

We are lucky to be here and grateful for how amazing Clay is doing and handling his illness. He is a stud and we love him and all his bald headed amazingness.

Love Tab and Clay

Day +10

Today was a good day. It started out rough. But once they got the pain meds going he felt better. We actually had some fun today. Clay painted a tractor, took a 3 hour nap, and played perfection. Chemo brain helped me win. Let me tell you more about the tractor, this paint job started 2 days ago and was finished today. Clay got a letter on Wed from a boy on the floor that asked the nurse to help him find a pen pal. Clays nurse asked if it would be okay and Clay was excited to know some one else here. The boy wrote to Clay and Clay wanted to give him a gift to play with so he made a tractor that moves. He wrote a nice letter back to the boy telling him who the best tech is, where to get things to do and the good things to eat before his chemo starts. I took a picture because he was so proud and happy to make another kid smile. The picture above is the kid I like to see, he is happy and has a new friend.

Today was opening ceremonies for our little league and the league said some really nice things about Clay and our family and dedicated the season to him and his recovery. The guy who was the mc is one of the news guys from nbc and he honored Cole for being the hero he is. I hear it was nice, wish I could have been there. Afterwards Lily had a softball game and they won. I was told Lily is doing good and having fun. Cole played a late game and they ended up loosing in the last inning. He was bummed out but handles loosing well. It was great to have Nicki there, she doesn't get to come to alot of their games, so today was good for her. She probably doesn't know it but I am so glad she is there. I think she was a big help in getting Cole's homework done and helped to save his grade by keeping him on task after school. It also helped to know the laundry is done and food is made every night. If I'm sad she is going home I cant imagine what Tad is thinking.

Anyway. Good for had by all and feeling happy and healthy, well as healthy as can be with no white blood cells.

Love Tad and Clay

Shold have mentioned...

As soon as I hit post I realized I had left out an amazing little girl in my life. Lily's softball has been playing for several weeks now and her first game back was Wed. The Angelz did awesome. Her coaches are super supportive and so kind. They won their game on Wed and play again Sat. Good Luck Angelz. Go Lily!!!!!

Day + 8 hair loss begins

This mornings pillow. Hair loss has begun.

The eyeball. Notice swelling from last night has gone down.

Race car made him happy today. Thanks Dad.

As I sit here tonight feeling sorry for my boy who is tired and feels like crap cuz his throat hurts and his mouth hurts. I started thinking about a family that I was given a blog address to that lives in TX. www.calebhuffines.blogspot.com. He was diagnosed with a brain tumor in August or Sept of last year, about the same time as Clays diagnosis. They lost him today to his battle with this nasty killer. As I think about them I think about how lucky we are. How grateful this is a battle Clay can win. A battle that has a 96% cure rate. I am grateful he is doing as well as he is and I know he can win this battle. I am grateful we had an amazing boy who was willing to donate his bone marrow and an amazing Lord who knew this was going top happen and blessed us with both siblings as matches. I know the Lord has his hands in all things and he has a greater plan for Caleb Huffines as well as my boy. Caleb's plans are in heaven and Clay's are here on earth. Clay has decided he wants to be a doctor and develop a way to fix the mouth and throat sores so kids who are fighting the nasty battle can do it with out these miserable sores. Treatment would be more bearable and less painful if the mouth and throat sores were not in the way. Clay has developed such a strong testimony from his treatment so far. Today he had a really bad bloody nose and his platelets are really really low and the nose bleed would not stop. It took four hours to stop and 2 bags of platelets. During the time Clay was frustrated and he stopped what he was doing and said a prayer out loud. The nurse and I stopped what we were doing and bowed our heads. He didn't ask of I would help him or even think about it. He knew if he asked for the Lords help, he would get it. This would have never happened pre sickness. In fact most of the time when we prayed as a family his eyes were open and he didn't pay much attention. When the nose bleed stopped and he was feeling better he again said a prayer of thanks. This time he asked if I would sit by him and hold his hand in prayer. What a kid I tell ya. He is going to come out the other side of this a new person with a new outlook on life, family, school and most of all God. For that I am grateful and willing to not question the Lord for this battle.

Anyway, I said a little prayer tonight for a person family I have never met but feel the pain and heartache that I fear the most. Peace be with you Huffines.

Back to Clay and our family....

We had a good day once we got past the four hour nose bleed that led to a two hour nap. Clays hair has started to fall out so he should be bald by the end of the weekend. Got a little laundry done with help from our awesome nurse who kept checking until a washing machine was empty. We built a Lego race car and had a nice visit from our favorite tech Tommy. Tommy was working on another floor and took time out of his lunch to come visit Clay. That made Clay feel good and he even cracked a little smile. Tommy is working on his masters in pharmaceutical chemistry. We have given him specific direction to create the only pill that has to be taken by mouth into an iv form. He made the deal. I guess lots of parents have made the same deal with him. We all hate this little white pill that is the smaller than a tic tac. He has to take it twice a day by mouth with sores down the throat and in the mouth. He throws it up every time.

Clay and I are excited for tomorrow. Opening Day for baseball in our league. Lone Mountain is where we play and we love love that league. This is the first opening day in like 8 years I have missed. The first in 3 years not as a board member. We got a call the other night from a board member asking if it was okay to dedicate the season to Clay. It is a huge honor and Clay is so excited. I hope some one gets it on film because I bet he would love to see it. We are excited for the season to start and for Cole to report back the games. Go LMLL and go Jr Dodgers!!!!!!

Well, good night all. We love and miss ya.

Day + 7 One week

We hit our one week anniversary. And what a day it has been. My oh my oh my. First I was able to leave for a little bit and run to the store. I only brought 2 pair of shorts for Clay and myself not thinking. So I ran to ShopKo and pick up a couple of things. Did I mention that I love ShopKo.

Clay was able to get out some creativity and paint a couple of airplanes and kind of work on a tractor. Clay got a little flustered with that and we all know what happened when Clay get frustrated. Grumpy Clay came out to play. He soon was mellowed by an allergic reaction to a new medication to protect his heart. He has swollen like a balloon in the face. The nurse says this is normal because of the mucusitis. I think it is scary and a little overwhelming. from the sounds of it, he has done very well. Most kids have these reactions on day 2 or 3. He lasted until day 7. He was in good spirits most of the day. It is the nights that are the hardest. Again, normal. I keep thinking, how is any of this normal? What is normal in the world of chemo and hospitals and cancer? I know that everyone is meaning well , but it just frustrates me. It has been a really long day and I am a little irritable.

The pictures above are of Clay and Elliot. He is a Labradoodle that comes to the hospital every Thursday to visit the kids. He is super sweet and just loved that Clay wanted to maul him in place of Logan.

The other picture is of Clay tonight while he was having the reaction. He was swollen and "normal".

Love to all and thanks for listening to me vent,

Love Tab

Day +6

No counts and strong will power makes you fall asleep at the laptop.

Clay's eye is so gross now. It is cool looking and harmless.

Clay and Ben playing Call of Duty

Sorry I didn't post last night. I wasn't tired or anything, I just didn't feel like opening up the laptop. I know alot of you follow to make sure we are okay and I am sorry I didn't post.

Wednesday was a fun day of the same thing. Clay and I hanging out in a room trying not to go stir crazy. Clays favorite tech was on duty, Ben. He noticed Clay was lonely and bored so he gave me a nice break and played Call of Duty with Clay for a while. It was nice to have some one other than Mom get killed at video games. While they were plating I went outside and sat on the lawn and talked to my awesome sister in law who is moving. It was nice to get out of the room and let the sun hit my skin. I wish Clay could get out to, but not now. In several weeks when his numbers come back up.

Clay had a hard time surrendering last night and falling asleep. He was looking online at dogs he wants to get when he gets home. Yep that's right I'm a sucker and promised him a new puppy when we get home. Anything to give him something to look forward to and to occupy his time.

All in all it was a good day. The things he is having a hard time with is the mouth and throat sores. He has mini, well not so mini, cancer sores that run from his mouth down his throat into his GI track and his tummy. Those are a side affect of Chemo, no white blood cells and no platelets to fight infection. There is nothing to make them go away, we can treat with pain medication as needed. They are doing a great job of helping him and he was handling it really well.

Thanks for everything and all the visits from family.

Love Tab and Clay

Day +5

We had a day similar to yesterday with a few changes.
First. We hit ZERO. There is no where to go but up from here. With the zero count comes some pain and some risks. His mouth sores and throat sores are hurting something awful. He had his first does of morphine today. The nurse said that probably by the end of the week he will be in much more pain and should be looking at the morphine drip. I know some of you are like oh no not morphine, but it is fine and he should be on it a week if not less. Other than mouth and throat sores we had a good day.
We found the glorious treat of a slushy. The nurse brought him one this morning and he loved it. He ate 2 more today and all 3 slushies stayed down. We only threw up one time today. That is progress. Texas Roadhouse brought in lunch for families today. I had some super yummy rolls and cinnamon butter. Thanks for the amazing donation from Texas Roadhouse.
Other than that all is good tonight at PCMC.

Love Tab and Clay

Day +4

My child is going to drive the nurses crazy all thanks to his Dad. Who is surprised by this. hahaha. Before Tad left he brought Clay a Nerf gun with a ton of bullets. He is having alot of fun with it and the nurses are all being very kind and patient. I could never be a pediatric nurse and I love all of them here. There must be something that Primary does to weed out the nurses that are mean. Everyone is so friendly and willing to help. All of you nurses who are my friends, thank you thank you thank you. I want to especially thank our cousin who is a nurse on this floor and makes sure Clay is taken care of. She is a genius. Erica you rock and I have a total new level of respect for you. Brett lucked out with you and I hope he knows it.

Today was alot more of yesterday, he has his ups and downs. One minute he is happy and having fun and the next his head is in a bucket. The docs are trying something new, they have put a patch on the back of his neck by his ear, it is a motion sickness patch. I can tell them bright and early in the morning that it does not work for Clay. His counts are dropping further down and he should be at zero any day. For those of you going huh, let me explain. He did a week of chemo but that takes time to work. ie. counts, hair loss, tiredness. They do the transplant right away so while the old cells are dieing the new cells can just jump in and take over. This process takes about 2 weeks if there are no set backs or other illnesses. They are watching for alot of things and draw blood twice a day, take a urine sample and a stool sample every other day. All of these things tell us he is doing great and progressing as normal. In fact he is doing better than normal because he is still so lively and has enough energy to make me tired. Everyone that comes to visit all say this cant be a day four kid. But he is and he is doing great. We should crash around day 7 or 8 if we do at all. I don't know we shall see.

I have been hearing about all the boys in our ward and the shaved heads. I cant wait to get a picture and post it. I hear they all look awesome and I couldn't be happier for the love and support from our ward in Vegas. Way to go boys.

Well, I talked to Tad tonight and all was well at home. They were able to pull something out of the freezer from the meals that were made for us and not worry about anything. Tad was able to get Cole back in school and talked to most of his teachers. All of them seem to be supporting him and most have said what ever work he turns in they will accept. We shall see when grades come out. Lily went back to school as well and of course forgot her home work and any make up work at school. I know you are all shocked that Lil would forget something.

The picture is an update of Clays eye. I know it looks gross but it is okay. The nurse said this is common and it will most likely end up filling his whole eye and wont heal up until after his counts go up or longer. It looks super gruesome and everyone wants to see it. We have been taking pictures so he can wear it as a badge of pride. He should get something out of all this throw up. If its a gross eyeball well then so be it.

Anyway, We love everyone and hope they all have a great week.

Love Tab and Clay.

Day +3

Clays 11 yr old scout troop gave him a puzzle. Thanks

He broke a blood vessel in his eye tonight.

Day number 3 has come to a close. In ways it was normal and other ways it was stressful. Today Tad and the kids went home. It was sad to see them go but it has been the plan all along. Cole and Lily need to get back to school and Tad has got to get back to his office. Nicki was able to take a week off so she is going with them to get things back to normal. She is awesome and she is going to get things going and make sure homework gets done.

Clay is doing well. The Doctors all say things are progressing like normal and that's a good thing. He has been throwing up still but that is getting better as well. Now he only threw up twice today. The last one popped a blood vessel in his eye. It looks gross and scary but in the long run a blood vessel is the easiest to take care of and treat cuz there is no treatment and not much to do.

Well, I hope everyone is enjoying the updates. If you want you can leave words of encouragement for Clay. Also you can email him and he is also on Face book and he has been checking that more regularly.

Love to all,

Tab and Clay

Day +2

One of Clays walls in his room. Covered in love and happiness.

My 3 favorite people.

The boys playn video games. Glad to see them together and happy.

Day plus two has been the best day so far. Clay has so much energy and spunk. He wanted to wrestle most of the day. Luckily Tad and Cole showed up so they helped keep him busy. Cole and Clay were able to play a couple hours of Call of Duty. Lil was able to come in for just a couple minutes and hang out. We were able to get a picture of the last day together for a couple months. Its hard to think they are going home and going back to a normal life of school baseball softball and stuff while Clay stays here and gets better. I wish Cole and Lily all the best of luck in their seasons and know that Tad is going to stay on top of homework, laundry, dinner, bills and really life. I know that because Nicki is going home with him for the first week. I'm glad she is going, I feel a little better knowing the kids have grandma with them.

Anyway. We are looking forward to day plus 3.

Love Tab and Clay

Day 0 Transplant Day

Cole and Clays friends shaved their heads to support my boys.

The most amazing team around. Brenda, Dr Blood Guy, Dr Boyer, Jen the Nurse

The Bone Marrow being hung.

There are over 200 million stem cells in there.

Cole's battle wounds. 50 pokes on each side.

Got 700 cc of marrow

Bood Brothers and best friends

So I am posting this a day late but I was really tired and emotional last night.

Transplant day was a long one. It started at 6am with Cole being admitted to surgery. He was so funny, we are sitting in the waiting room at the crack of dawn and you could see the wheels moving in his head. So I asked him what he was thinking. His response was priceless. "Why am I the biggest kid here?" There were a ton of toddlers there. They are not used to kids that are 5 10. His feet hung off the edge of the bed and they didn't have socks to fit a size 10 shoe. hahaha.

Cole did really well and said he would do it again if he needed. Ya know, I knew I was trying my darndest to raise all my kids right and some times you look and say to yourself I am failing miserably or where did I go wrong. Today I can honestly say I am raising the most amazing young man I know. He actually thought it was going to be worse than it was. I can't believe he thought it was going to be really bad and still there was no question in his mind what he was going to do. All I can say is Wow what a kid. He has also decided this is what he wants to do for his Eagle project. He wants to hold a Bone Marrow Drive. Cole said he wants to make sure that anyone out there needs Marrow it is available. He and Tad and Lily are leaving Sunday for home and it makes all of us sad. No one really wants to go but they all know it has to happen. Clay and I will miss them and think about them all the time.

Anyway, back to transplant cuz I know you are all dying to know more. After Cole was done and the Marrow was removed, they got 700 cc and it took about 45 minutes. The Doc said his marrow was flowing and at one point they had to slow down the flow so the nurse could catch up with bags. He gets that from his Moms side. Afterwards Cole hung out in recovery and then came up to Clays room to recover and play video games. It was nice to have both boys in the room together. Lily could not come in because she is not old enough. She hung out with Grandma Nicki all day and then went to lunch with Dad. Cole requested Groves Market for lunch. Yum Yum Yum. The Bone Marrow arrived by a blood specialist in a cooler and everything. It was so official, he was wearing a white coat and everything. There was a celebration with both sets of Grandmas and Grandpas and Lily and Cole. There was also a bunch of the staff who came and they sung Happy BMT Birthday to You. It was alot of fun. The docs each gave Cole and Clay a gift and a tshirt. Cole's says donor and Clay's says recipient. I wanna got one for Lil that says my brother is the donor and the recipient. Anyway back to transplant, sorry I keep wandering, the bag was hung on his pole and the blood started to flow. It is anti climactic with out all the pomp and circumstance. So we made it a big deal. The marrow ran for about 2 hours and then a second bag ran for another 2 hours and that started at about 11 pm.

Well that was it. That was The Day of Transplant. It was an awesome day where everyone was happy and healthy and we were able to enjoy each other. It is amazing how a bag of blood can bring a Mom to tears. Not me, my Mom, she cries at the drop of a hat. How ever I did get teary eyed.

I am grateful for the calls, texts, emails, and prayers. You are what keep us strong and happy. Clay has a long road ahead now. He is going to get really sick for a couple of weeks but should perk up. We are hoping he starts to feel better with in about 20 days or so. Hopefully less but realistically that is the average. The docs have said we should be home to Grandmas by Easter. So that is the goal we are shooting for.

Oh by the way, I have to give 2 shout outs tonight.

One- Trevor and Jill, congrats and we will miss ya. Good Luck!!!!!!!!
Two-Cole and Clays good friends in Vegas are brothers and both boys shaved their heads. Ikika and Kalani, thank you. You guys are what true friends are made of and I hope that one day my boys can return the love. Dorisanne and Stan, you have 2 outstanding boys on your hands and we love them very much!!!

Day 0 March 17 Happy BMT Birthday

I am way to tired and emotionally drained to post alot tonight. For now. All the kids a great. Cole is a stud and he did amazing. Better than amazing but to tired to think of other words. Clay is doing okay. He is doing better than okay, he doing great. Bone Marrow is flowing through his body and now only time will tell. I will get on tmrw when I am more awake and tell the whole story. For now we are all good and sleeping well.
Good night,
Love Tab

Day -1

What an outstanding day!!! Do you know how great that feels to say? Clay has had a great day. He only threw up 4 times. He has been awake most of the day. The nurses and drs are still worried but say that today is a huge improvement. They have all reminded me several times, this is the lull before the storm. However we are enjoying today and glad he is feeling good and energized.

Cole and Lily were with Grandma Nicki today and they came up for a visit and lunch. Good thing they did cuz the scheduler forgot to call us about a final blood count from Cole. Anyway, the day is here and we are so grateful for Cole and grateful that Clay is healthy enough to have a transplant.

Love to all,

Tab

Day -2

It seems like every time I get around to posting it is after midnight and I am exhausted. The best part is Clay is usually asleep and feeling better (cuz hes sleeping). He has decided sleeping is a great tool for coping. He has been sleeping most of the day, I'm always afraid he will not be tired at night but he always seems to sleep most of the night away. He has to be woke up every 2 hours to go to the bathroom. It sucks but it is the best way to protect his bladder. There is a chemical in the chemo that affects the bladder if it sits in there to long, peeing every 2 hours prevents the infection. The big concern on all the staffs mind tonight is the uncontrolled nausea and vomiting. They are throwing everything they have at him but no luck. He threw up 7 times today. The rest of the week has been similar. After taking to the nurse she said nausea and vomiting is normal but this is excessive. She said they are barely able to keep enough fluids pumping through him. The nurse is going to call a pow wow during rounds to come up with something that is going to help. I hope they come up with something cuz we have one very sad yucky little boy on our hands.
Putting his nausea aside, he had a good day. Tad was with him and he said passed the yucky belly Clay and him played some games and he (Clay not Tad) slept alot. He didn't have any joint or bone pain today. The nurse did a bunch of pre medicating to prevent all the pain and stuff during chemo today. Oh yeah that is the other awesome thing today. He had his last done of Chemo. Woo Hoo. That is one little milestone. Tomorrow is a day of rest (yeah right) and transplant is already here. Thursday is the BIG day. I need to talk with the Dr's and find out more about how it works. I still am a little shady on the subject. I will let you guys know tomorrow night what the protocol.
I had a great day today. It was nice to get out of this room and let the sunlight hit my eyeballs. Today Tad came up and took over caregiver duty and I played with the two most awesome brother and sister ever. We kid napped Grandma Liz and went to Ikea and lunch and a park. My Mom had never been to Ikea and the trampoline place (original plan) was closed. It was actually alot of fun, even though Cole will never admit it. We found a squishy soccer ball for Clay. It is blue and white like his Royal team. I had to have it. Anyway, we had a ton of fun. I am super proud of all my kidlets and I only want to best for all 3 of them. Our struggle right now is balancing the time I have with them and the time I need to be with Clay. We are also having major issues in the home work department. But sometimes in life you need to have priorities. All I know is we have to savior protecting all five of us and we all have faith in Clay and Cole.
I cannot express to Cole my gratitude for his unconditional willingness to serve his brother and family. He may make me pull my hair out and I dedicate each and every one of my grey hair to him but man oh man do I love that kid. I love his smile, his dimples, his eyes and his love for all of us. I love the size of his hands and feet (thank you Grandpa Hardman), I love how he puts his arm above my shoulder to see how much taller he is than me and I sneak in a hug from him. I love just him.
See ya tomorrow night.
Love Tab

Day -3

I am not going to post alot tonight. I am super moody. Clay has had a bad day again. He is doing really well though. The new Chemo hurts his bones so he gets covered in hot packs and goes on morphine. He does well with that regimen.
Tad and Nicki came up today and sat with us for a while. Heather and the kiddos came up. It was nice for me cuz I took the kids and went on a hospital hike. We saw all the cool things and then went outside to see Clay from the window. They thought that was cooler than the painted horse. Thanks for the break kidlets.
K love to all and have a fun FHE with your families.
Tab and Clay

Day -4

PCMC form of Santa. Just kidding. He said that.

Our awesome security guard who cleaned up Clays mess.

Boy oh boy. This chemo has gotten to Clay. The nurses are trying to manage his nausea but he is having a reaction to everything. The first drug made him feel like his skin was crawling and he was literally scratching his skin off. The second drug made him loopy and he cried for about 2 hours with slur ed speech and double vision. They are trying another drug tonight, we hope this one works. The kid has not eaten since yesterday afternoon. The nurse said this is all normal and on schedule. Still, is does not make either of us feel any better.

The Dr on call said his counts are looking good and dropping as they should be. He said the schedule is still Thursday as planned.

We had some visitors today. We love visitors, okay I love visitors and Clay just puts up with them. haha. Mary and Dean came up to visit. They were in Ut already and made a special stop to visit. Dean is Clay's 11 year old scout leaser (the BEST) and he brought Clay a care package the scouts made for him on Wed. There was a basketball hoop, dart board, card game and poster. Those boys really took the time to think about what Clay would like and did a great job. If any of you moms ready this, Your boys are awesome and we are thankful for each and every one of them. I, K, G, D. You boys are the best.

We also had Alecia and Tanner come visit. Unfortunately it was right after a bog dose of Benadryl so they got the sleeping version of Clay. I'm glad they came so Tad had some one to eat dinner with.

The pictures above gave Clay and I a laugh tonight, amidst all the crap. We had just gotten into bed. Clay had been asleep for about an hour or less. I had just hit my head to the pillow at about 10:30 and Clay puked. This kid can hit a bucket from across the room but this time there was no bucket and he was sleeping. He leaned over the bed and puked. I know gross, but it gets funny. Because he has Chemo in his system they Had to call the security guards to clean up. The nurses and techs can do everything but the floor. I know dumb but whatever. So this beg mean security guard who is actually a super nice guy and another guy had to come in a clean up his puke from the floor. I had to take their pictures cuz Clay and I were laughing and having fun with them.

I always say thanks to our friends and family but tonight I have to give a shout out to the security guards at PCMC. They are the best.

Love to all,

Tab and Clay

Day -5

Well this has been a day. The chemo is starting to have the typical side affects. He still has his hair but the nausa is preety bad. He has been throwing up quite a bit and there for not hungry. He knew this was going to happen so while he was feeling good he ate all his favorite foods. He still has good spirits but is tired alot and kinda just wants to sleep. The drs and nurses all say this is normal so we are just going with the flow.
All is well, we are just tired. Transplant is still scheduled for the 17th and his counts are right on schedule.
Love to all. Tab

Day -6

Well somehow I got my days mixed up. He only has 6 more days until transplant. The best thing, today is my birthday!!
I was able to spend the day with Cole, Clay, Tiff, Dave, Cort, Caddie and my Mom. We went to the zoo and had a ton of fun. The whole time Cole and I kept saying Clay would think this was so cool. He and I took a ton of pictures and the minute I got back to Clay I had to show him all of them and tell him everything about the day. I found out the zoo has a Keeper for the Day program. I think Clay would absolutely love it and when he is well enough and has dr approval I will try and get that set up. While I was out with the kiddos Tad was with Clay and they played a bunch of board games. He is such an awesome Dad, he likes to do things Clay likes and does a great job keeping him entertained.
Clay is feeling well, he is still eating and drinking. His tummy is a little queasy and he gets nauseous and the drop of a smell. His spirits are still good. Laughs and plays around. We are relishing in the moment because we know within a week or so all of this will change.
Love to all,
Tabitha

Day -8

I am really tired tonight. Clay was up all night with severe night terrors. Once he was back to bed he was good for 3 hours and then up again. He doesn't remember any of it. Whats interesting is he fell out of bed and hit his head, he still doesn't remember any of it.
We had Dani come play with us today. She played Clue and hung out. She is leaving for New York tonight so she wanted to spend her last day home with Clay. He had a fun day. The tech tonight is Tommy and he is a gamer, he and Clay played Halo Reach. I asked him if he other patents to tend to and he said this is what he is here to do, keep the kiddos happy and upbeat. Tommy so far is our favorite tech.
K I am exhausted so I'm have to keep it short. Remember we love everyone and are so grateful for all the emails, phone calls and texts to check on Clay. We have him good for a couple more days and then he crashes. I am loving every minute of his happiness cuz I know soon he is not going to be happy.
Love to all and good night,
Clay says I miss my silky.

Day -9

This is his Broviac. There is a tube coming out of his
chest and it goes all the way to his heart.

Happy St Pattys Day. This will be Clays second birthday

and the day my hero goes in for Bone marrow Harvest.

Today the journey really begins. I know it began in August but we are at Day minus 9. That means 9 more days until transplant.

Today was good. He ate. After lasts night late night surgery he could eat all he wanted. French toast, eggs, bacon, chicken, corn, steak. You name it he can order it. If he wants a pb&j at 3 am he calls room service and orders it.

Today we started Chemo. There was a fluid placed in his line and he asked the nurse what it was she said it was his Chemo, his response was priceless. Oh well that doesn't look to bad, why is everyone freaking out. This is going to be easy. We all thought, well you keep thinking this buddy. I hope he does well with Chemo and the transplant. No one likes to see their child hurting. I think the roller coaster is going to build he and I a stronger relationship. We will learn from each other.

We had several visitors today. It was nice to see friends and family, it beaks the day up. there will come a time when we say no thanks cuz he is just to tired and sick but for now we welcome our friends. Thank you to Dani, Grandma Nicki and Bishop Johnson (he came all the way from Vegas to check on Clay, no just kidding he was here for meeting and made time to visit).

I was able to go home today and play with Cole and Lily. It was nice we went to the dollar store to get some decorations for Clays room and found a couple cool things for the kiddos. Lily found these cool socks to support breast cancer, she picked one up for her, Courtney and Sally. Sally's says Survivor on them. Don't tell her I'm putting them in the mail tmrw.

Anyway, the pictures are of Clays room decorations and the other is of Clays Broviac. He has what is called a double lumen which means to lines for blood draws and medications. He says it itches and hurts by his muscle but he is doing great.

Clay had his first day on Chemo he takes it every six hours for 3 days. So far so good no sickness yet, but that should come in a couple of days. Other than that we are great and he is doing amazing like we all knew he could.

Love Tab

Clay says Bingo, no I mean Black out, no it was a Bingo.

His joke of the day told on the TV during Kids Crew. Why was Tiggers head in the toilet? He was looking for Pooh. Makes a Mama proud!!!!

wierd??

So that was wierd. I was typing and then it said I was done. Um K?
As I was saying...
The frustrating part was the nurses told us to be at the hospital at 10am and no food or drink after mid night. K that is easy we can do that. When we get to PCMC we find out he was to check in and get a room but wasn't scheduled for his procedure until 6pm. Yes you are right 6PM. Well that is silly but fine. We get all settled and put together and about 545 I ask the nurse to call and make sure 6 is still good. Nope it is not, there was a trauma who came in and that hurt child take priority. Of course it does but that means we get to wait. 10pm is when there is a knock on the door for the OR. procedure done and we are settled back into "home" at midnight.
It has been a long night but glad to have a port now so no more I.Vs.
Thank you Drs and staff. You guys are still great even though we are all hungry and nothing is open at mid night.
Good Night, Tab
Clay says, Go away.

Putting in the Broviack

So today was a little frustrating. One of the next many. Clay handled it like a champ, I was a litttle irritated.

Today is the BIG day!!!!

TODAY IS THE BIG DAY!!!

I'm sorry I haven't posted is some time. My Grandma and Grandpas house does not have wi fi. Tad is trying to convince my grandpa it is secure and no one is going to get his bank account information. He is a silly old man whom I love so deeply.

This weekend has been nice. We hung out with family at Grandpa Whites funeral. It was so nice to watch Cole, Clay and Lily play with their cousins. It makes us want to move back. Not really, well maybe a little. We had some appointments yesterday to close up everything and get Clay registered and Cole set up for Bone Marrow Harvest. We were told yesterday that there will be no more fast food or going out to dinner for a whole year. Those of you who know our family know that is going to be tough. During the season we are go out alot. Well, no more of that. I guess I get to become a good mom again and cook more at home. Anyway, so last night we had our last night out to dinner. We went with Grandma and Grandpa Daniels and had Golden Corral. The best thing about yesterday was the SNOW. It is beautiful. Those of you that are locals are ready for it to be over, but as a Vegas person this is new and awesome. However it sucked to drive in. I love the snow but glad we will be gone by next winter.

It was suggested to us by other patient parents to shave Clays head before he starts treatment. I guess when his hair starts to fall out it gets really annoying and then its to late to shave. So Sunday afternoon we cut hair. Cole said he would support Clay and shave his head too. Above are the pictures of the head shaving day. Cole is an amazing brother and when Clay struggled about cutting his hair he stood up and said he would do it with him. They are a great pair, even though they fight like cats and dogs they are and always will be the best of friends.

Today Clay has been admitted to the hospital. This begins our 6 week journey of hospital food and four white walls. As the Child Life Specialist puts it the life of living in a fish bowl. Clay seems to be in good spirits today, there is alot of nervousness and anxiety. He ran into the councilor in the hall and was able to talk to him and little and ease his worries. Our room is next to the mountains we have a great view of capital hill. There is a giant parking lot out our window also, that is a bummer but the bright side is we can see our family coming up the walk way to visit.

Anyway, so far so good. He has a procedure tonight and will start Chemo in the morning. I will update you later on how that is going.

Love to all,

Tab and Clay