Tuesday, May 31, 2011

Update from Clinic

So I just talked to our NP and she wants to up Clays anti rejection med to 5 pills twice a day. That is more than double. She said it is fairly common for a cold to stop med absorption. So we are going up. She also wants us back Friday instead of Monday. Not a big deal and it should be fine.
How does 3,000 calories sound. That is how many cals they want Clay eating every day. I said That's a lot of cereal. He lost four pounds and if he doesn't gain weight they are talking about putting an NG tube in his tummy through his nose. His response was Like hell your putting that in me. So I told him to EAT MORE. I think it helped he hasn't stopped snacking all afternoon.
My heart goes out to a friend today. A friend that Lily played softballs big sister, Marie. She had a really good friend who lost her battle to a brain cancer this week. I did not know the girl but I know Marie and she has a broken heart. This cancer is a horrible horrible disease who at one time or another has affected us all. Some closer than others. I urge you to support your local cancer research centers. The only way to stop this evil is to find a cure. I pray for Marie and her friends family to find peace and comfort.
Love to all, enjoy your summer,
Tabitha

3/4 of the way there

Can you believe that today is day 75. Clay has had Cole's Bone Marrow in him for 75 days. If all keeps going well we will be out of here in 25 days. That is less than a month, four weeks to be exact. It has been a long road but we have come this far what is four more weeks. Also we have been in Salt Lake for 89 days.

Tad and the kids came up to visit this weekend. It was kind of a bummer weekend. I was still not feeling well and then Clay decided he needed to catch my cold. Him and I spent most of the weekend in bed, it didn't help that it rained most of the time and Clay cant go in the rain. We did feel good enough to go the Nick and Heathers for a bbq on Saturday. None of Tads family came but Brett and Erica and Tony (all Tads cousins) came over. Erica is the cousin who is a nurse on the ICS floor at PCMC. It was nice to chat with her and bring her up to speed on Clay. Her baby is also super cute and fun to play with. It was nice to go hang out with family, Nick and Heather are good friends and we love to go over and play, our kids all get along and so it can be both adult time and family time. Thanks guys for being so awesome.

I already miss the kiddos. School will be out in 2 weeks so hopefully they can come and spend a week here afterwards. Clay has been talking with his friends, alot whom he wont ever see again, and he gets a little sad when he hears about the field trip to the baseball game, the field day, or even the year book dance,you know the normal stuff kids get to do when its your last year. He knows he is where he is supposed to be but it is a saddening knowing all your friends are moving on with out you. He doesn't know this but his teacher has a year book that is being signed by all the students. He is gonna love it.

One last thing. My sister Tiffany graduated on Friday. She was at UCMT becoming a massage therapist and she finished. So, if you are ever in need of a good massage give her a call. She is in Lehi and for now is practicing our of her home. Good luck Tiff and congrats!!!!!!!

We love each and every one of you. I am grateful for our family and even our friends. I know there are some peeps out there who read this that I don't know and I say thank you. Thank you for letting me have a voice, an outlet to express my love and gratitude. You are all amazing people and we are lucky to have you in our lives.

Love Tab and Clay

Thursday, May 26, 2011

Sunday, May 22, 2011

Weekends in Utah are rainy

I like to look for rainbows whenever there is rain.

Clay and Alex sneaking in the cave.


Clay and Daven. We are sad that Jill and Trev are taking him to MN.


Clay and Alex hangn out at the Gardens.


Clay throwing logs




It has been raining so much here. It has also been way cold. It is probably a good thing so we stay home. I like to get out of the house and when its raining we just stay home and stay healthy. We were kinda busy this week. We had our usual Mon Fri doctor appts, we saw a movie, and went shopping with grandma. Friday was Tanners services so we thought about him alot. Friday we went and spent the evening with Tiff and the kids. It is fun to go visit them, we hit two dollar stores and Dave was done. Saturday was Aunt Ruby's funeral. Aunt Ruby was Tads grandmas sister. She was an amazing lady, all the Searle women are, and I wish one day I can be like them.


Last night while I was flushing Clays line and it didn't work. Bummer. I was just talking with the nurse on Friday about how we haven't had a line break, clog or anything and then BAM. We have clinic on Monday and they can clear it out. Its not a bog deal and happens all the time. So, don't worry or fret about it.


I found out today through a blog of a friends that Ashely, a girl who was in the hospital for a really really long time passed away during transplant. She had alot of aliments and had waited a long time for transplant. Her parents are awesome and loved her very much. They are from Idaho and took her to Ohio for transplant because they were the best for what Ashely needed. To the Duke family, I pray for your peace.


Today is day 66. That means 34 days left. WooHoo.


Love to all,

Tab and Clay













After the funeral we went to the Thanksgiving Point Gardens. They are so so so beautiful. We had so much fun. Clay and Alex were able to go a wonder with out the grown ups and we got some great pictures of flowers and people. I loved being there and want to go back. Tad and the kids are coming in town over Memorial weekend and I think I may take them. Lily will love it.

Friday, May 20, 2011

Two Months and Counting





On Tuesday we hit our 2 month mark. Can you believe it two whole months have past since Cole blessed us with such an amazing gift. I had to do a write up for a thing explaining Cole's gift and the process of donation. It got me thinking about how awesome he was to do this. The sacrifice and the selflessness he showed our family that day. We are blessed to know our donor. There are some, alot, of families who have nobody to thank and to give praise to. This week was the award ceremony at our middle school as well as others around and a bunch of Cole's friends got awards. I was a little bummed that Cole didn't get an award. I started thinking about all of the wonderful things Cole has done this year. He advanced a couple of reading levels and did his best in a math class who had a horrible teacher. He also chose to save a life and be a great big brother. He has helped to keep up with Lily and helped her get better in softball. He has had to live with out Mom for a little over three months. I don't care about an award handed out at school, I care about what a good boy he is and how much he has done for our family this school year. The 2010-2011 school year will not be remembered as the year of a million awards, it is the year our family got a new start and a life was saved.


Today was Tanners funeral and both Clay and I were bummed that we weren't able to go. I wish his family all the best and hope to see them soon. Clays dr appt today was great, he was supposed to get transfusions today but his blood counts are moving up and we were in and out in under an hour. The Social Worker is going to help Cole and she is doing a write up about Bone Marrow donation.


Today was a great day and still is going on. I love my life right now and love my family and friends. Tonight is the father and sons camp out in Vegas. Have fun Tad and Cole, Clay will be with you next year.


Love to all,


Tabitha

Wednesday, May 18, 2011

We Are So Blessed

This week I have been thinking about how blessed we are. The loss of Tanner has really had me thinking. I think about how close we are to the finish line yet so far way. I have been trying to be more patient with Clay and I can tell he has changed his attitude and is trying to be more happy. He has not fought me on taking his pills once since Sunday. I think it sunk in a little that his life could be so much harder. We are blessed to have a nice home and a wonderful family to stay with. Grandma and Grandpa have taken such good care of us. If Clay is having a craving for something Grandma either makes it or goes and gets the needed items and makes it. Every once in a while it isn't what Mom makes and he doesn't like it. I always thought I was an okay cook, but Clay tells me quite frequently that I am a fabulous cook and he cant wait till we are home and I can go back to cooking all the time. Grandma wants me to stay so I can keep helping her, Tad wants me home too. I never realized how much was actually being done by me. I thought I was just living and doing and being. I'm excited to be needed and wanted. This journey has taught us all alot. It has taught is to love and appreciate all the family members. Clay misses Logan the most, I think Logan misses Clay too.
Tad has been feeling under the weather this week so here goes another week of them not coming in. He went to the most awesome doctor, Dr McAllister, today and was told he had a sinus infection. Dr. McAllister put him on an anti biotic and he and the kids should be up next week. We hope.
All week we had been planning on going to Tanners funeral on Friday but we found out Clay has a Dr appt and a transfusion scheduled for Friday so now we cant go. Both of us wish we could but Logan is a long way away and now with the appt we are not. Our thoughts and prayers go out to the Smith family and we wish you nothing but the best.
We have a little friend who has been having a rough go at it this week also. His name is Andrew he isn't even a year yet. Can you believe that, less than one years old and already been through so much. He has been doing fabulous but something turned this week and he has come down with some viruses. Lizzie and Stew you are awesome and can do anything. Andrew is strong and will get through this. Keep up the good fight!!!
Clay is doing great. The transfusion on Friday is standard procedure. Not a big deal. He has been trying harder to eat more and I think it is helping. He has almost stopped throwing up. Still a little but nothing to major. We ventured to the movies today in the middle of the day. We went to Rango and were the only ones in the theatre. Since we were there solo he was able to take off his mask during the movie and enjoy some popcorn we made at home. The ticket lady told us we couldn't take our own popcorn in so I asked for the manager. After explaining why we brought our own he was very apologetic and let us in with our own stuff. I wish people would notice there is a kid with no hair and a mask on and think a little. I understand not everyone knows or cares to know, but come on, use a little judgement before you speak. Easier said than done. Anyway, he and I had fun at the movie and are thinking about a couple more we want to see. This movie theatre has a discount day with 1/2 price tickets and 1.00 popcorn and drinks. We got in for 6.00 today. I think we might go once a week at that price. We shall see.
Anyway, He and I are doing good. Everyone at home, except Tad, is doing good. We are all happy and some what healthy.
We miss you all and have a fun rest of the week.
Tab and Clay

Sunday, May 15, 2011

Tanner Forever Strong



There is one more angel in heaven today. Clay lost a friend last night. Tanner is and was an amazing young man who is meant to do good things on the other side of the veil. He has such strong parents who love him and would go to the ends of the earth for Tanner or his siblings. He has fought a long hard battle with two different types of cancer.
He will be deeply missed. I pray for his family to have peace and comfort. I pray they can remember the Eternal Plan of Salvation and the blessings we have been promised. I am grateful they are an Eternal family and will be together once again.


Clay is sad today because of the loss of who he considers a friend. He is also grateful for the plans.


Love and Peace,

Tabitha and Clay

Wednesday, May 11, 2011

Happy Birthday Tad!!!



WooHoo Good news. Clay doesn't have GVH (graft vs host). He some how picked up a virus. There is nothing I did wrong or anyone else. We pick up viruses every where we go, he is just more susceptible to those bugs than normal people. Clay was put on an antiviral med when we got here so he has some meds in his system and they are sending us home Thursday morning. I'm glad he is fine and its just a virus, so is he. It means no steroids and no follow up care. GVH kids get seen three times a week, we only go in twice a week and our nurse practitioner wants us to once a week by the end of next week. That is almost normal. We are almost normal. I mean we will never be normal, we are who we are.



We are at day 55. Can you believe that? it was 55 days ago that Cole donated his bone marrow for Clay. It was 55 days ago Clay was able to start fresh and get better. It was 55 days ago our lives started over. it has been a long road but I think we are on the downhill part of the race. 55 days behind us means only 45 more days to go. That is about 7 weeks. We were in the hospital for almost 7 weeks. This is going to be easy. Haha Easier said than done. It is tough. Lil is having a hard time, she misses her Mommy and Cole is having a rough go t it (even though he wont admit it). I think Cole has learned that Mom isn't the meanest person in the house. Tad is staying on top of him and every thing he is doing. Good, its good for both of them. Last night Cole played, and lost, but he was awesome at first base. At the beginning of the game he was able to be 2/3s of a triple play. He caught the line drive, tagged first and threw it beautifully to second. Good job buddy. Be glad I wasn't there I would have been going crazy and embarrassing you. Lil is done for the season and will be back with her Angelz for the fall. One less kid playing is nice for Tad, it is hard to juggle both kids games and practices, scouts and achievement days. He is doing a great job at it. I'm proud that he has taken on the role of Dad and Mom for these two kids. I can see it has made them closer together.



Today is Tads birthday. I'm bummed that I cant be there with him as a family but Clay and I sent him cupcakes from Retro Bakery today and he was surprised and thought they were yummy. I hops he falls in love with them so I can order them more when I get home. They are super yummy and addicting. Check them out http://www.retrobakerylv.com/.






Tonight I ask my awesome friends to add to their prayers all of the children on the ICS floor at Primary. There a several kids up here that are struggling but I don't want to name them all. These kids up here are awesome, they are strong, brave and powerful. I am honored to know the parents and I love that Clay has friends who are going through the same thing he is going through. This is such a spiritual place, no matter what each room believes. We all believe our kids are going to get better and there is a higher power involved. I am grateful for our Lord and Savior Jesus Christ and the sacrifices he has made for Clay. The power he has in the healing of Clay and other kids. I love how the Holy ghost can help us feel at peace with the decisions the doctors have made. We will all be eternal families in the end, weather our child i taken too early or not. I am grateful for the Plan of Salvation and the knowledge I was given 15 years ago.






Happy Birthday Tad,



Love Tab and Clay






Tuesday, May 10, 2011

Picture Time

Our View

Procedure time, getting wheeled down to the O.R.



Cute Adlee's first birthday.



My Mom and I at Sunset Blvd. We a such dorks.


Cousins!!!!! Small, Medium and Large


Clay took this awesome pic outside of Alecia's house in Draper


He is bored this go around.


Still bored but we are resourceful


Clay is doing well after his procedure and since I have no new news I figured I would give you a picture montage.

















Here We Go Again



It has been a while since I have posted and for that I am sorry. But as you all know, no news is good news. We are at day 54 for those of you keeping track. I am I cant wait for day 100 to come so we can go back to Vegas. Clay feels the same way, his friends all keep texting him to come back home before the end of the school year. That's not going to happen, oh well. He likes talking to his friends and keeping up with the latest gossip and the scores from the soccer games and stuff like that.






So, last Friday I expressed some concern for how much Clay was having bowel movements and still was not eating. The NP agreed with me and also his blood counts were dropping in some areas and rising in others (not a good combo). So they scheduled Clay for two scopes an Endoscopy and a Colonoscopy. The docs are looking for a thing called Graft Vs Host. It is where the old battles the new. Yes there is still old cells in him, not too many but enough to be causing problems. The GVH is in the stomach lining and it is causing some mild to moderate discomfort. The good news is he is absorbing his meds and some nutrition, he has a lot of energy, and his skin is looking great. With that being said they think if there is a GVH going on in his belly it is probably mild and can be treated with steroids at home with some very close care by the home health nurse and the docs at clinic. He also had some blood work done to rule out several other things. There are no infection in his body, no staff, no bacterial or viral. So other than the lack of eating and the severe bowel movements he is doing well. Clay is in good spirits and isn't too worried about the scopes. The Child Life person spoke to Clay yesterday and explained what the procedure was and what the do. He feels at ease and is okay with all of it now. Hopefully we should know more by the end of tomorrow and can go home. The docs admitted Clay yesterday (Monday) because he needed some platelets and just to give us a good night sleep on the luxurious fourth floor. They are going to watch him for 24 hours after for bleeding and any new signs of GVH so we should be able to go home on Wednesday (Tads birthday) with a plan of action.






We are good here and are gratful to all the people who have taken such good care of us while we were out of the hospital.



I pray the surgeons hands are steady and in the end we have a plan and are ready to move on.






Thanks for all who have put his name on the prayer rolls what ever affilation you have. We have been so blessed up unitl now and we will continue to be blessed and be gratful for it.






Love,



Tab



Monday, May 2, 2011

Monday Clinic

it is so nice to be in and out of clinic in an hour. Clay didn't need any transfusions today. The docs are keeping him off the TPN and on the fluids with magnesium. As of the appt the 3 pills for the Techro (anti rejection) is the same however the results have not come back yet so that can change. He has picked up a virus some where. Who knows where. They said since there is no fever and no real symptoms except his counts went down a little and he has a tiny cough, they are not going to admit him and just watch him. Any sign of a fever or any worse feeling we are to call the hospital immediately. So that is where we stand. He is still doing amazing.

He is the best kiddo in the world. He was given this trial because of his strength and power. He is doing so well fighting this and he should be home in his own bed soon.

I hear my cute neighbor and bestest friend in the whole wide world is taking good care of my family and feeding them fish tacos with out me. Thanks for helping out and making sure they are all safe and sound. I miss my Sally Lou and my Mexican. I told Tad to hug and kiss all of you but he told me no. That must feel awkward. hahaha. Thanks again.
We also keep getting letter in the mail from Clays Primary class. Sister Waggoner is his teacher and she is awesome. Thanks so much for keeping him in the minds of your class and taking time out of your lesson to write him. It raises his spirits more than you know. He wants to write everyone back so hopefully we can get something in the mail by the end of the week. Thanks Sister Waggoner and all the Primary.

Love to all, Tab and Clay

Sunday, May 1, 2011

We are almost half way

I was looking at the calendar today and we are almost to day 50, the half way point. Half way there is a big accomplishment, especially with no illness. Crap, now I have to knock on wood, I hope I didn't just jinx us. We are glad to be half way there, that means half way closer to being a family under the same roof again. Clay and I miss home and out family and friends. We know we will be home sooner than we think.

We have had a busy weekend, heck it was a busy week. Last week was the last regular season game for Lily and her team did awesome. If any of the Angelz still read this blog, thank you so much for taking such good care of by baby girl and encouraging her to do great things. She learned a lot from you this season and we look forward to fall as a team. I promise she will be at all practices and all games cuz I will be right there with her. Cole had a couple of games too, his team is struggling right now but they will get out of the slump and get some W's on the board. He is doing well also and is having fun on the field. Tad is enjoying sitting in the stands and just hanging out. He does miss sitting in the dugout encouraging the kids but this has been a nice break in the whirl wind he is dealing with right now.

This weekend Clay and I were able to get a little adventurous. On Friday I went to see Sunset Blvd with my Mom at PMT. She works on campus and PMT is one of her areas to maintain and she does such a lovely job and always does good work that the PMT manager gives her a pair of tickets to most of the shows. It was fun to hang out with her and just chill. Sunset Blvd was awesome but I cant wait for Rent next. Saturday we had to pleasure of going to Madison Whites baptism. Clay had to wear his mask the whole time, which he hated, an everyone was so happy to see him. Maddie is a daughter of Tads cousin BJ. She is the first in her family to be baptised, her little brother and sisters watched intently on the baptism, I heard her little brother say, that is my sister, shes all wet. It was so cute. Afterwards we went to the luncheon to catch up with the family and let Clay play for a bit. After we went to Aunt Alecia/Grandma Nicki's house. Really it wasn't for them it was for Alex, Clays cousin. They played video games for like 8 hours. I was able to get a way for a little bit and hang out with my friends. One was visiting from Colorado so the 6 of us old timers went shopping and to dinner and lunch. I didn't catch up with them until about one, which was right after lunch. I didn't get Clay picked up until about 11 pm. Needless to say he was late getting hooked up on fluids and late getting his meds but sometimes you need that. You need to escape and not follow a medication schedule. Since it was so late getting him on and we were out so late be is still sleeping at 11 in the morning. Keep o sleeping kiddo, keep sleeping. We have nothing to do today except dinner at Alecia's later. He can sleep and rest all day. It has been a long weekend and he needs it. Sleeping people heal faster.

Anyway, it has been a great week and weekend of adventures and family. We are grateful for our family and for everyone who has expressed their concern for Clay and told me how great he looked. We love you all and wish you nothing but the best.
See ya later...
Tabitha