GO VIKINGS!!!

Mall of America is HUGE!! We walked all over the place and I doubt we hit all the areas. We had fun and the kids thought it was amazing.
There is an amusement park inside The Mall of America. The kids had soooo much fun going on all the rides. Alanna, Trey and Katrina were our dare devils and went on some pretty scary rides. I was a bit bummed that I wasn't able to go on the rides...being pregnant has its disadvantages. But I had fun watching the kids' expressions. Priceless!
Brett Favre with Trey.
Jared Allen and Trey.
Fahu Tahi with Trey.
Adrian Peterson with the family.
Shane and Trey at the Vikings Stadium before the game.
Vikings Ship that the players run out from at the beginning of the game. We saw lots of fireworks and heard the Vikings horn being blown throughout the game. Fun time!
The Family in front of the stadium just before the game was over.

We had a great trip and had lots of fun. We stayed at the Radisson Hotel and inside was a huge indoor water park. Lots of fun slides and wave pool with a lazy river. The kids had a blast swimming. Saturday we went to the practice field and watched the team finish practicing. Trey had Brett Favre sign his jersey. Trey also had a helmet signed by several players and a football signed by the players. That was a pretty awesome time. That afternoon we went to the theme park where the kids rode tons of fun rides. Sunday a limo picked us up at the hotel for the ride to the game. That was fun. The kids thought it was so cool. After the game we went to a sea aquarium and saw lots of fish and sharks. That was fun too. We kept really busy and all had a great time. We sure appreciate Make-A-Wish and our amazing wish granters Kim and Deven. Thank you so much for making this a memorable experience. I can't say enough about Make-A-Wish. Thank you!!!

Our Trip to BYU!

Some of the awesome BYU Football players giving Trey some gifts...like a Y flag that they each signed for Trey to take home.
Trey after he found out that his Make-A-Wish was granted. Happy boy. He is holding our itinerary for the weekend of our trip.
Group picture with family and friends and Coach Mendenhall!
Trey reading the proclamation about his wish. He couldn't stop smiling!
Family shot in front of the cougar. BYU were going to play against the UTES that weekend...thus the red feathers in the cougars mouth!
We were able to tour Coach Mendenhall's office. The kids loved sitting in his chair and seeing all his cool pictures.

We did have an amazing time and I am so thankful to the program Thursday's Heros. It is an experience our family will always cherish. Thank you BYU Football Team!

Thursday's Hero

We had an exciting time yesterday as Trey was invited to be BYU Football's "Thursday's Hero". Each week BYU Football team honors a person who has gone through a hardship. We had a tour of BYU's athletic facility and saw so many cool and fun memorabilia. We then were able to see Coach Mendenhall's office and the kids took turns sitting in his chair! Afterwards we went to the indoor practice field where the whole team was practicing for the upcoming game against the UTES. After their practice, the team grouped together and Trey was "honored" by the team. The team gave him a flag that they all signed and Trey also got to sign a flag with other signatures of Thursday's Heros that goes out with the team at each game they play.

Trey's wish was also granted during this time. He had no idea that his wish had been granted. I had to keep it a secret and it was hard to do! The link below shows a clip of this.

http://www.broncomendenhall.com/trey-larson

It was so amazing and fun for Trey and our family. I invited a some extended family and 3 buddies to come be apart of this special event. Space was limited so not everyone was able to come. I wish more could have been there with us.

A huge thank you to the BYU Football team and the wonderful program they offer! It has meant the world to Trey and our family! More pictures will follow. We took lots!

It was snowing when we got to the Make A Wish place...but I still wanted to get a picture of Trey in front of the sign!

When we first got to the Make-A-Wish foundation, there was this sign in the front entry that says: "Welcome to a Wishing Place Trey!" What a wonderful way to help make Trey feel special and to personalize the whole experience!

These stars represent other children who participated in a Make-A-Wish. Trey will also get his own star to have hung here. It is really quite pretty and magical.

Using his special key to the wishing room, Trey unlocks the door to declare his wish.

Inside the wishing room. The top of the cone is where he placed his wish, which goes to the "Wishing Wizard" to be granted. The room is beautiful with the lights changing color and the sound of beautiful music playing and the peaceful sound of water flowing from the waterfall pictured behind Trey.

Make-A-Wish A is truly a wonderful organization. They made us feel welcomed and personalized the whole experience. They took the time to help Trey decide on a wish. They also made our other children feel welcomed and important. They said Trey is welcomed to come visit the center anytime and he can use his special key anytime he wants to visit the wishing room.

Trey decided his wish would be to see the Minnesota Vikings play and to meet some of the players. The Vikings are his favorite NFL team. His wish granters are really wonderful and I know they are working hard to help make his wish possible. (He has a 2nd wish choice and a 3rd wish choice if the 1st one isn't possible) We are just waiting to hear back from them.

Trey had his spinal tap about 2 weeks ago. This time I remembered not to let him eat before the appointment. :) Once again Trey proved to be quite the character while he was under sedation. When the nurse had to step out for a moment he turned to her, holding two fingers in the peace sign and said "Peace out Yo". He always has a way of making us laugh...even while drugged up!

The doctor continues to be pleased with how things are going. Trey's medication was increased again. The first medication that was originally increased was increased some more. His ANC counts aren't where they want them. So once again on Monday he will have home health come and draw his blood for a CBC count.

Trey finished playing flag football and they won their last game! He had lots of fun playing the sport. He continues to do well in school despite having missed half of last year. He is really close to achieving his Bear rank in cub scouts and is very excited about that. We continue to feel the Lord's Hand in our lives and thank Him everyday for the amazing support of family and friends.

May God Bless you all.

Make-A-Wish

Trey had another appointment last Monday and all went well. He was suppose to have a lumbar puncture (spinal tap), but he ate something before hand (my fault) and they are doing it at the end of this month instead. His ANC counts are still too high, even with one of his medication increase. So they are increasing another medication. There are alot of questions running through my mind that I need to ask the doctor on the next appointment. Shane and I are getting concerned with all this medication increase. So far Trey seems like he is tolerating it okay. Still we worry.

When we first found out about Trey's diagnosis, we were told Trey would be able to do something with Make-A-Wish. We sent in a request form and they replied back and said Trey was approved. Today, Trey received a neat package from them. It included a cool paper castle with a special key inside. It also had an invitation. It reads:

"It is our deepest honor to invite you and your family to come visit A WISHING PLACE for the special occasion of making your wish. Please bring this key with you when you come, for it alone will open the WISHING ROOM at the top of the WISHING TOWER. We eagerly await your presence."

Trey has been assigned Wish Granters who will help Trey in his wish decision. When he decides on a wish, we go to this special WISHING ROOM and he declares his wish. He is sooo excited about it, but really doesn't know what to wish for yet. I think this will be an amazing experience. I've read about the Make-A-Wish Foundation online and it is such a wonderful organization. I'll keep posting updates as Trey decides on a wish.

Thank you again for the wonderful support and continued prayers for Trey. I am very grateful for them!

First day of school and more!

Picture below is Trey's first day of school. His hair is growing back so fast now! He was so glad that he'd have hair before going to school!

Wow, summer has come and gone all too fast! I'll update on some of the summer fun, but I'm waiting on some pictures.

School has started and Trey loves being back in school. He likes his teacher and loves being around his friends. Also he is playing flag football. I hope he doesn't get to tired, but the doctor said that it'd be okay for him to play. His first game is tomorrow and we are excited for him to play!

Monday he went in for his monthly chemo treatment. His ANC counts (the ones that fight infection) are apparently too high and because of this the leukemic cells could come back. So they have increased the dose of one of his pills. They hope this lowers his ANC but they don't want it to get to low because we don't want him to get sick either. To tell the truth, I am not sure I totally understand all this. In about another week, home health will come out to take his CBC and we should know how Trey is responding to the increased dose. I guess even in maintenance, we have to take things step by step and not get to comfortable with how things are going. Trey always keeps a positive outlook on life and we love his spontaneous spirit and humor!

ksl.com - Young patients help Hyundai mess up a car for charity

ksl.com - Young patients help Hyundai mess up a car for charity

A news clip that showed a picture of Trey. He was pretty excited to know that he made the news last night! :) (The picture is very similar to the one that I took of Trey and posted earlier)

Happy Day!

We are now officially at the maintenance part of the chemo treatments! Now we go once a month to the hospital...yeah! He will continue to get the Vincristine via his port at the hospital once a month. Trey will only get the LP (back poke) once every 3 months. Most of the chemo treatments will be given orally (pills) taken at home. He has four different types of pills to take and they are to be given different times throughout the month. Every 3 months marks a new round of chemo even though it should all be the same medications from here on out. His CBC counts should be good and remain in the normal range for him throughout. We look forward to Trey getting back to playing and being active once again.

While we were waiting for the medication to come for the sedation, Trey's doctor came in to visit with Trey. He is such an amazing person. He makes his patients feel like they are the most important person there. He jokes & laughs with them. He was asking what plans Trey had for the summer and Trey told him that he was going to WA to visit grandpa and grandma. The doctor said jokingly, "Watch out Seattle...here...comes...Treyouble!" Trey laughed so hard and replied back nodding his head up and down, "True!" Everyone in the room got a kick out of it!

While we were at the hospital, Trey was asked if he wanted to participate in putting a hand print on a car that would be traveling around the nation promoting cancer awareness and donating funds to research. He thought about that for a minute and then said something like, so you mean my hand will be going all over the country? I said yes and he smiled really big and said yeah he wanted to and then he asked right away if his hand print could be blue. Well he got to have a blue hand print with his name on the car. It's for Hyundai Hope On Wheels. The vehicle goes around the nation to different children's hospitals and donates money to help with research. Trey is pretty excited that his blue hand print with his name below it will be going all over the place. The above pictures are of him with the blue hand print.

We found out the date of his last chemo treatment....drum roll please.....March 11, 2013! We are looking forward to that date now. It's been a hard six months, but we have been blessed by many sweet angels along the way. Countless people have blessed our lives. Thank you so much. Our hearts will forever be filled with gratitude.

Parade Walk

Our city had a celebration over the weekend and our church was invited to do a float. Trey wanted to participate so much. I called the doctor to see what he thought of Trey walking in the parade. He told me that it would probably be okay because it was outside and he wasn't going to be in an enclosed room with lots of people. Church, school, movies etc are all places that are off limits for now. So I went ahead and made the kids' costumes. The theme of the float was "Guess what I saw in my backyard" All the kids dressed up in bug costumes. They were all so cute. Trey did so well. He walked most of the way. When he got tired he sat on the float. I'm glad he got to go. He had do much fun!

I'm a bit behind in updating the blog. We've had a busy June. Last time I wrote, I mentioned that I'd have to administer one of the chemos. We had the supplies sent to us and I was kind of worried about doing it. Trey's port was kept accessed so I didn't have to worry about accessing him. I did get to de-access his port after the end of each week of giving chemo. Trey was so nervous-he made me nervous :). All went well and he told me it didn't hurt. Whew! The second week went well too. It didn't take long to get the hang of it. About a week and a half ago, Trey's red blood cell count went way down. We took him in for a blood transfusion. This last leg of the phase really has done a number on his blood counts. Last week we found out that his ANC counts are really low. They are down to 500 as of last Wednesday. We've just been keeping him inside and washing hands like crazy. This Wednesday he'll have his blood checked again. Hopefully his counts will start going back up. He seems to be doing ok overall. I'm surprised he hasn't been more tired. His red blood count is still low, but not low enough for another blood transfusion. Trey has been happy and anxious to play with friends again.

A True Hero...

In Memory of Clark Kimble

July 27, 1985-June 11, 2010

Clark is Shane's cousin. He fought hard and long in his battle with the different illnesses that plagued his body. He was courageous and had such a positive attitude. He is an inspiration to many and will be greatly missed. We love you Clark! May God be with your family and embrace them with His love.

(Trey & Clark taken a few months back at Trey's cousins' baptism.)

Clark's amazing story-http://www.superclarkkimble.blogspot.com/

2nd half of the phase

This is Trey "feeling good!" after coming out of the conscience sedation. He was on a happy high!

Thursday was the start on the 2nd half of this phase. We were up at the hospital for just over 5 hours! When the doctor came in she started talking about all these different chemos and how I'd give Trey one of them through his port at home. I said, "hold on, back up what are you talking about!" I was under the impression that the 2nd half was going to be a repeat of the first half. Apparently not. He'll be receiving the chemo ARA-C through his port at home for 4 days and then a break and then another 4 days. The home health agency will send us all the supplies I will need to administer the chemo. They will also come every Wed to draw his blood to check his counts. He may need a transfusion sometime during this phase.

This part of the phase he had Cyclophosphamide given to him through the port (IV push given over the course of an hour). Then they did give him the 1st dose of the ARA-C at the hospital. He also had another LP with methodextrate given through the spine. A lot of chemo for one day. Oh yeah he also started 6-Thioguanine or 6-TG which are pills he'll take at home for 2 weeks. That's a load of stuff!

We tried something different when putting Trey down for the LP. Instead of going completely out-they gave him some stuff for conscience sedation. He was out but not totally. He didn't remember anything during that time. It was really weird though for me. His eyes stayed opened the whole time and they moved rapidly back and forth. Kind of unnerving. He was soooo scared because it was different from being put to sleep. He was so worried about feeling the needles. He did a great job and when he came out of it he said "I feel sooo good! When do we do it again?" He didn't remember a thing! He was so loopy and silly. He was singing songs and telling me I had two heads. I laughed so hard. Better not let him have this drug too often...he was liking it a bit to much. :) Doing it this way is actually better. Less invasive and he wasn't as sick afterwards. That's always a plus.

He's had a cough for about 2 weeks. Since his counts will be going down, we just have to be careful for the next 4 weeks. Hopefully by July 8th he will be starting maintenance. Trey has done so well and we continue to feel the tender mercies of the Lord.

Low blood counts

So we are about halfway done with the "break" from chemo. Today Trey had his blood drawn for a blood count check. This phase of treatment is pretty intense, thus the 2 week break. Trey's counts dropped dramatically from just a week ago. So far his red blood and platlate counts are still ok although they did drop, but his ANC (the ones that fight infection) are low. Just last week they were up in the 4000's, which is in the normal range. Now they are down to 700. If he was to have a chemo treatment this week, they would've made us wait. The doctors expect his counts to climb back up a bit more before next week's chemo treatment. Then of course they will probably drop again. (The blood counts drop about 7-10 days after treatment.)
He'll have his blood count checked again next week before the treatment.

Trey is also experiencing mouth sores and joint and back pain. He gets to swish with some stuff called "magic mouth wash" which Trey hates. Hopefully this will help with the mouth sores. Trey's knees hurt him alot too. The doctor says that joint and back pain is one of the side effects of the chemo. Last night was a rough night for him...he couldn't seem to fall asleep. But right now his spirits seem high and he is feeling better. Playing games with his older brother helps alot!

Monday's chemo treatment went well. In about 2 weeks he'll go back for the 2nd half of this phase. It's a nice little break. He's doing much better at taking his pills. For a while there it was like pulling teeth to get him to take his pills.

In the clinic waiting room there is a bulletin board with cut out paper hands that kids can write what they'd like to do then they pin it on the board. Kids have written all kinds of things. For a while now Trey keeps saying how when he grows up, he wants to invent a cure for cancer...one that doesn't take so long and doesn't hurt. He's so serious about it. So when we saw the board, he wanted to write something on the paper hand. He wrote that he wanted to invent a cure for cancer. Maybe we'll have a scientist in the family! :)

Last week we went to Trey's class for a special presentation by his teacher. She made a DVD of pictures of the kids throughout the year. It was fun to watch it with his class. Miss Mitchell has been great. We want to thank her for all she has done for Trey. Thank you! Trey also stayed to eat lunch with his friends. What a fun treat for him!

On Monday, Trey had his chemo treatment. All went well. Although just when he was leaving treatment, he threw up...barely made it into a tub. Close call! He has had a lot of anxiety lately. We asked about it, and the Dr. didn't seem too worried or surprised. He said the chemo could be to blame. They did give him something to help calm him down. He has had a lot of chemo over the last week. Trey has had some pills to take and for some reason the thought of swallowing pills has made him so upset. He's had so much anxiety over that. So far this week hasn't been too bad. He seems a little more relaxed. And he's back to being hungry from the steroids he's on. :) The last few days he hasn't had much energy and has just wanted to lay down. But he has been happy and positive.

A few weeks back, Trey discovered that the hospital has a small garden area with plants and flowers, waterfalls and a small pond. Since then, Trey asks if we can walk through there when we come for his clinic visits. He really loves the garden and this last time even wanted to sit on the bench for a while. He must have a calm and peaceful feeling when he visits the garden. He wishes we could build one in our back yard. Maybe some day. For now the one at the hospital can be his little sanctuary.

Trey Made It Through!

Trey did it! He was brave, strong and tough! He was so nervous and has worked himself up so much that he was shaking pretty hard by the time we got to the hospital. We had to wait for almost an hour and half before they administered the shots. We had to wait for the chemo and his tag to identify him. They put the numbing cream on, which helped some, but Trey said it still hurt. Now we wait another hour to make sure he doesn't have any bad reactions to it.

I told Trey that he is so brave and he told me that he doesn't think so. I asked him why he thought that and he told me because he is so scared and crying. I told him that being brave and courageous doesn't mean you aren't scared. Someone who is brave and courageous can be scared, but they press forward anyway with faith. He's resting now and as I look over at him I see a boy who shows a great measure of bravery. I love him so much and I'm so glad he is my son.

Thank you to the many people who prayed for Trey today. Prayer is very powerful and we have felt it in our lives.

Pressing Forward

The last couple of weeks have been great. Trey continues to have his teacher come and tutor him 2x week. She says he is doing really well. His counts have been good...so he has the ok to do most activities.

Today, I took Trey to his chemo appointment. This last phase is called Standard Delayed Intensification. It's a two month process. He has a new chemo drug. It's called doxorubicin. It is an antibiotic that prevents DNA from forming, thus preventing cancer cells from multiplying. It is given through the IV. He also gets the vincristine. So Trey gets both these doses once a week for 3 weeks, then he gets a week break and then he'll start the course over again for the second month. He'll also start on the steroid, dexamethasone again. It won't be quite as strong as last time and not as often. So hopefully his appetite won't go crazy! Trey also had another lumbar puncture, ie back poke. That's were they administer the methotrexate. He had a harder time coming out of the anesthesia. He seemed more groggy and had a harder time walking. By the time we got home, he was very tired and he lost his appetite. (Poor guy hadn't eaten all day because he had to have the back poke.) He laid down right away and within an hour was throwing up. His back is sore and his legs hurt him. I'm just so glad that he hasn't had worse side effects. My heart just sinks when I see him like this...I don't think I could handle it if it were worse. Shane feels the same way.

The dreaded day is almost upon us. On Thursday, we go back for the PEG-Asparaginase, ie leg poke. He had this done at the beginning of his diagnosis while he was in the hospital. It's an intramuscular injection. Three needles in the thigh at the same time. Ouch! Last time it totally scarred Trey. So he has been fretting over this for several months. I hope he doesn't work himself up to terribly.

We look forward to the maintenance phase, where we will be going up to the hospital only once a month! Trey is a true trooper and fighter. We are so proud of him. Thank you again for your thoughts and prayers. In the uncertainty of life, it is a true comfort to be surrounded by wonderful family and friends.

End of a phase....and FISHING!

I am so sorry it's taken me so long to update the blog. Where does the time go?!

Last Thursday was the last of this particular phases' treatments. Whew! One more phase to go...then maintenance! Once again we are told that Trey is doing so well. Many kids feel the side effects from this particular chemo and at some point the dose stays level and is not increased. Trey hasn't had all the side effects so his chemo has been increased each time. This last one was the max dose that he can receive. The doctor laughed and said Trey drinks this like it's water! (Although you don't drink this chemo, it's given through his port...an IV push) So far Trey has been able to tolerate the chemo. Amazing.

Trey has been wanting to go fishing, so we decided to go last weekend. He felt fine for most of it and we caught 3 fish! We look forward to going more over the summer months. We are humbled by the power of prayer and how it has been a great blessing in our lives especially the last few months. Thank you again for your prayers.

Emotional week

This week has been a rough one for Trey. The chemo treatment from Monday sure hit him hard. He's been throwing up and laying on the couch not wanting to do much. The other day he had a melt down moment. We're trying to help him understand that it's okay to be mad at cancer, to be hurt and to cry, but to also be thankful for how well he really is doing overall. I told him that there are other kids with his illness that are worse off then he is. He thought for a moment and said "there are?". We want him to walk away from this experience 3 years from now with a positive attitude and with gratitude in his heart. I know he already is a happy kid overall. We are grateful for his courageous spirit.

Today, he seems to be doing better, although he is still laying on the couch. I think his muscles have weaken, as he has a hard time walking around and just wants to lay down-not even sit on the couch. I'm worried what the last dose will do to him on Thursday.

On another sad note, our beloved lab, Taylor died last night. She had been feeling sick the last couple of days. Trey took it all in stride. I think he has been so preoccupied with his own illness, that it hasn't really hit home what has happened to Taylor. It's been a very emotional week for all of us. Our 6 year old daughter didn't take it as hard as I thought she would. I asked her if she were sad, and she said not really. Taylor is in heaven. How sweet the hearts of our little ones.

Almost done with this phase.

Trey had another treatment on Monday. It was a long day. He had another lumbar puncture and I guess it took a bit longer for him to come out from being put to sleep for the procedure. Then he went up to the clinic for chemo treatments. His counts still look great so they of course increased the dose of Methotrexate. He also got a dose of it with the lumbar puncture or spinal tap. Then he got the Vincristine dose. One of the side effects of this chemo treatment is something called "foot drop". It's when you have trouble lifting the front part of your foot. Every time Trey has clinic the doctors look for signs of the different side effects. They checked for "foot drop" and Trey is showing some difficulty with lifting the front part of his foot. It's not terribly bad, but we are noticing that he shuffles more when he walks.



We've noticed that right after Trey's clinic visit, he seems fine. It's about 24 hours later that the effects take place. Last time he didn't get sick right away, and when he did I thought it might have been the flu bug. But I think he was sick because of the chemo treatments. Today he has been laying on the couch most of the day, not feeling really sick, just tired. Tonight he got sick and threw up. He says his legs and feet hurt too. I feel so bad for him. Hopefully tomorrow he will be feeling better. He's such a trooper!

In 10 days he goes back for the last treatment of this phase. Then he'll get 2 weeks off! Hooray for Trey! He has one last phase before maintenance. The next phase is suppose to be pretty intense as well. We just need to remember to take one day at a time. We are so grateful for how Trey is doing. Thanks again for your prayers. We send out all our love to you.

Spiderman!

A couple of fun pictures of Trey and "Spiderman". These were taken after Trey's chemo treatment at the hospital. On one of the floors there is this spiderman statue and makes fors fun pictures.

The chemo treatment went well. They increased the dosage again. The doctor is so thrilled with how well Trey has been doing and with how positive Trey's attitude is. He always has a smile for the nurses and doctors.

Last night Trey got sick and hasn't been feeling well since. He felt great after treatment and the day after. Maybe the increased dose has caught up to him a bit.

My sister and her family have come for Easter weekend. Trey has been looking forward to playing with his cousins. He's bummed that he feels so sick.

We want to wish everyone a Happy Easter. What a wonderful time to reflect on the Atonement of Jesus Christ and His resurrection. My heart is full of wonder and appreciation. I am so glad that one day we too can be resurrected and that our bodies will be made whole. I know that Jesus Christ lives and loves each of us. I know that the gospel of Jesus Christ has been restored to the earth by a prophet of God. The Lord will never leave us and we can find strength through faith and prayer and obedience. I bare you my testimony in the name of Jesus Christ Amen.

Sunday, Trey had his blood drawn and the other kids got to see it. They'd never seen his port accessed. They were pretty curious to see the needle and how it works. We heard a few oohs and aahs. I think Trey liked feeling tough in front of the his brother and sisters. It was kinda cute actually.

Monday we called the hospital to make sure his numbers were high enough to get the chemo treatments. They were,so off Shane and Trey went to Primary Children's. It didn't take as long as last time, which was nice. They increased the one chemo treatment. Trey felt fine all day until about 3pm. Then he started feeling really tired and said his back hurt like when he got the lumbar puncture. Unfortunately we had to cancel his teaching session with his school teacher because of how bad he was feeling. He slept quite awhile. He hasn't had much of an appetite the last 24 hours. I don't know if that is from the chemo or not. Today, though, he feels much better.

Shane took a picture of Trey and a life sized statue of Spiderman at the hospital. They are both wearing BYU hats! I will have to see if I can download the picture and post it.

We are so thankful for our blessings and that Trey is responding so well to treatments. May we all feel the love of our Savior and His hands in our lives. God Bless!

New Phase Starts

On Thursday, we took Trey in again to Primary Children's. He had a nice two week break. When we got there, he said "I kinda missed being here." Crazy kid. He must of just missed seeing all the wonderful nurses and doctors!

This new phase is called Standard Interim Maintenance. The doctor said it is pretty intense. He will go every 10 days to the hospital for chemo treatments. Trey will get a dose of Vincristine, which he had in the first phase. He will also get a drug called Methotrexate (MTX). He has received this treatment through the lumbar puncture, but never directly into the blood stream. Each time he goes back the MTX will be increased in dosage amounts. The major side effect is that his counts will go down. Once his counts reach a certain level, the doses will not be increased. They don't want his counts to get too low.

The day prior to him going to get the chemo, we have a home health nurse come and draw blood for his counts. The treatments are count dependant, and if his are too low, they don't want to give him the chemo.

This last nurse that we had was a bit confused and didn't seem to know what he was doing. One of the most important things you have to do when deacessing the port is to flush with heparin. Heparin helps prevent the blood from clotting in the port. Well this nurse didn't do that because he said he couldn't find it and said saline would work just as well. Shane and I didn't think that was right and when we asked the nurses at the hospital about it, they said it was a huge no no. We thought about just going to the hospital to have the blood drawn, but found out they wouldn't access his port and he would have to be stuck with a needle. That would defeat the purpose of getting the port, so he wouldn't get poked with lots of needles.

We asked to have a different nurse come the next time. The home health agency was very accommodating and we appreciated that. This experience just reaffirmed to me that as a parent I really have to know whats going on with Trey's medical care. Just because they are professionals doesn't mean they know everything and do everything right. This was a learning experience for me.

His doctor said Trey can still do his normal day to day things and be around people. He said he will let us know when and if Trey's counts get to the point that he won't be able to go out. So for now we continue to let him ride his bike, play at friends' house and have friends over. It's not all fun for him though. He still has homework and reading to do and he still has chores. We want him to still be responsible and learn how to do things. :)

Again we want to extend a thank you for the continued prayers and love. We are so blessed to have such wonderful people in our lives. It would be horrible to walk through life alone-that's why the Lord gave us such wonderful blessings as friends and family!

S.I.B.S. Day

I know the kids don't look too happy here, but they did have a good time at S.I.B.S. Day. It stands for Super Important Brothers and Sisters. This is a workshop for kids that have a sibling with a life threatening illness. It gives them a chance to meet with other kids who may be going through similar things.

Primary Children's held the program last Saturday. They divided the kids into different groups depending on age. They all had a good time and got to meet new people. I think over all it is a great program to offer.

Alanna came home with a doll and a bunch of medical stuff, like gloves, mask, cap, band aids, gauze, syringe etc. She had a lot of fun. Katrina made a collage of what she loves (of course it was mostly of animals :) She enjoyed joking around with the leaders that were over her group. She really had a good time. Skyler's group talked about feelings and they made masks. They talked about how we sometimes "mask" our feelings to hide how we really feel. He wasn't too thrilled to go, but being the "mean" mom that I am, I made him go. I think that he got something positive out of it, even if he won't admit it. Teenagers for you. :)

I'm appreciate how supportive the hospital is with the different programs that they offer. It has been such a blessing to us. They have so many resources for parents.

Blue and Gold

Last Wednesday was the Blue and Gold banquet for Trey's Cub Scout Pack. Trey advanced to the Bear and I got to draw a bear paw on his face. Each part of the paw represented something in the cub scouts. He earned his Wolf rank and is so excited to start working towards his Bear.

Part of the program for the Blue and Gold was a Polynesian dance the boys worked really hard to learn. They performed it a couple of times for their families.

They did such a great job! Way to go Pack 1050! You guys are AWESOME!

The picture below is of Trey's pack group. There are some Wolfs, Bears and Weblos. Trey is blessed to have such a supportive group of friends and leaders. Thank you!!!

Special Guest at School

Rachelle showing them what the different types of blood cells our bodies have.

On Friday, we had a Child Life Specialists come to Trey's classroom to speak about leukemia. She was terrific! She did a great job of talking with the kids about leukemia and what it is and how they are helping Trey. The kids had a lot of great questions and comments. I was really thrilled with how well it went. Thank you Rachelle! We really appreciate all the Child Life Specialists at Primary Children's. Trey's class is also wonderful. All the kids are so supportive of Trey and really care about him. It means so much to us. I know Trey really loves his classmates and is so thankful for them!

Two Weeks Off!

Thursday's clinic went well. He had the usual blood draw and then had the LP (lumbar puncture) again. His counts were up this time so he didn't have to have a blood transfusion. We were told that next Thursday we didn't need to come! Trey was sooo excited! He told me, "This means I have two weeks off!" A couple of days before we are scheduled to go back, a home health nurse will come to our house to draw blood. His next phase of treatment is "count dependant". Meaning, if his CBC's are high we can continue, if they are low we have to wait until they are higher to continue.

Overall, Trey continues to do well. On Wednesday, he went to his cub scout meeting and had a GREAT time with his fellow cub scout pack. It was fun to see him smiling and having fun with his friends. Tuesday night he went to his friends basketball game. He was surprised to see some of his other friends there. So it turned out to be double the fun! Thanks Taylor for inviting him! He loved it! I love seeing him smile and his eyes light up! We are so blessed to have him in our family!

Caps and Hats!

Trey's cap/hat collection continues to grow! It's been so fun for him! Thank you all for the caps and hats! Below is Trey wearing a special cap. It has some of BYU's football team signatures. It even has Cosmo's and the coach's signature! Thank you to his friend Taylor for this cap! He had fun wearing it to his treatment on Thursday-he really showed his BYU pride! :)

Go Cougars!

A Day of Blood Transfusions

Trey has been doing so great! We feel very fortunate that he is responding well to the treatments. He hasn't been very sick - at least the last few weeks.

This last week, Shane and I noticed that Trey was quite pale looking. When Trey and I saw the doctors, they said the same thing. So, it wasn't much of a surprise that his blood counts were very low. I just didn't think he would need a blood transfusion. I guess if the hematocrit (this is the amount of red blood cells in the blood) falls below 24% (normal being 35%-45%) then they want to give a blood transfusion. Trey's hematocrit count was 16%. So we got 3 units of blood. Each unit takes about an hour long to infuse. We went in at about 12:30 pm and didn't get out until after 8pm. Made for a long day! Trey also had another spinal tap. He didn't want to be put to sleep. He is getting tired of going through the procedure. And it doesn't help that he has to "fast" the whole day prior to the procedure being done. He hates not being able to eat anything. Who wouldn't. But overall he doesn't complain much and he handles everything so well.

This is Trey, wrapped up in a "heated" blanket watching one of the movies we saw, while the blood transfusion was taking place. We saw two and a half movies!

I know that this is a strange picture to take, but I wanted to show my kids and whoever else may be wondering, what a unit of blood looks like. After Trey got the transfusions, he said he felt much better. I am so grateful for the medical technology that we have.

Even though his hematocrit is low, Trey's ANC counts are high once again! We are glad about that. He can contiune to visit with friends! That is always a highlight for him. We also spoke with the school and got permission to have Child Life come to his class. I think that will be a great experience.

Overall our spirits are high and we feel so grateful to our Heavenly Father for how well Trey is doing. We just continue to embrace these good days. Thank you again for the prayers and concern we feel from each of our family and friends! Please know that our love is going out to you as well!

Thank you!

Trey wanted to write...

Thank you for all the birthday wishes! I had a great birthday and ate lots of pizza and icecream! I am sure blessed to have such great friends and family!

Love to all,

Trey