One year Anniversary!

One year ago today I drove Tommy up to Primary Children's Hospital and recieved the horrible news that he had Leukemia. That was the worst day of my life! I can't believe it's been a whole year since that day, and I am so grateful we are already a year into his treatments. We have 2 more years to go, but it is amazing to look at Tommy and see how well he has done throughout this whole ordeal. I am so proud of Tommy for being so strong! What a champ! To look back at what he has gone through is tough, to see the pictures is a reminder of just how sick he was. It's sad how quick we are to forget how precious our little ones are, with how often they drive us nuts! I need to remember more often what he has gone through, he is one amazing little boy. Tommy keep fighting your fight, and you'll be a winner! We love you and are so proud of what you have accomplished in your short little life. I don't want to think of how our life would be without you. I have to thank my Father in Heaven for making Tommy healthy again, and for allowing us to be his parents. We are so blessed, and it is such a great time of year to remember all the things our Savior has done for us. Merry Christmas!!

Tommy's "Make-A-Wish" Trip

We were so lucky to be able to go on Tommy's "Make-a-Wish" Trip to Disneyworld in October. It was so amazing, all provided by the Make-a-Wish foundation and Give Kids the World. We were treated so well from the time we met Mindy our "wish coordinator" to the time we got home. They really know how to spoil these little kids, and they all completely deserve it for what they've gone through. I have to thank you all for making Tommy's wish come true, he had SO much fun, and felt SO special.
When we got to the airport we met Roger, who was our greeter and brought us from the airport to the Give Kids the World Village where we stayed. The kids loved Roger!
The Give Kids the World Village is a charitable foundation, all donated to kids with life-threatening illnesses. Being there was very humbling and a reminder of everything our little Tommy and our family has been through in the last year. It is amazing how many sick kids there are in our world, it's so sad! Looking around there, being with all these families who have children who are so sick, we were SO grateful that Tommy is so healthy. We love you SO much Tommy! The place is amazing, each family gets their own little villa and each house is decorated differently. There is a ice-cream parlor where the kids were able to eat ice-cream anytime they wanted to for FREE, that was a dream come true! There was a magic castle where inside all of their dreams come true, a Merry-go-round that the kids could ride all by themselves whenever they wanted to. There was a salon for girls AND boys where the kids all got cool fake tatoos and face painting, and Brooklyn got a manicure. There is a theater, a mini golf course, a free arcade, the coolest model train set I've ever seen, a train that takes you around the village, a pool, a playground that is themed after the game Candyland, and many places to eat whenever you're hungry. So that alone kept us very busy!!
When we went to Disneyworld, Seaworld, and Universal Studios, it was SO crowded! I think mine and Tom's favorite part was the tag they gave us that got us to the front of the line on ALL the rides. That saved us many tears and melt-downs from the kids, and us. Tommy's favorite rides were the "Jaws' ride at Universal Studio's and one called "Everest" at Disney's Wild Animal Kingdom. I have to say "Everest" was SO scary, it even went backwards in the dark! Tommy LOVED every minute of it and rode it a few times, Brooklyn was bawling, and I thought I was going to go into labor!
The weather was ridiculously HOT for October, they said it was one of the hottest on record. It was mid 90's with humidity, so we would just sit there and sweat! One of the days we had to take a break from the theme parks and go to the beach. We drove a couple hours out to Cocoa Beach. It was beautiful, and a nice relaxing break. The kids had a blast in the warm water and the fresh air. Zac and Tommy could have played in the sand all day, and I think they did.
The trip was so fun and I can't ever thank Make-a-Wish enough for providing that for our little Tommy! Thank you!!

My little KINDERGARTENER!!

Tommy started Kindergarten today, and it couldn't come soon enough... for him. He asked me all morning when he got to get on the bus, what is it about that bus? So I kept telling him in a couple hours, in a few minutes...then I finally got smart and stuck a watch on him. I said when the numbers say 12:00 it's time to go. Then he didn't bug me as much, just about every 5 minutes. He was so cute waiting for the bus with his buddy Parker, they were so excited. They were the first kids on the bus, and looked a little nervous about it, but we assured them it'd take them right to school. I didn't think I'd cry, because he was so ready to go, and I was so ready for him to go but I did anyway.
Tommy came home so happy, and loved every minute of his first day of Kindergarten. He got a "Ding-dong" from Mrs. Moon, and nothing could make Tommy happier. He told me all about the playground at recess and what he and the boys were doing, what could be better? What a great first day of school...Let's hope the next 9 months are just as great! We're so proud of you Tommy!

Relay for Life... "Team Jake"

Our friends the Jamieson's who's little boy Jake also has Leukemia set up a fantastic Relay for Life at Riverton High. They did such a great job and went to so much work putting it all together for Jake. It was such a fun, and emotional night to see all these kids and adults who have had cancer, and still are fighting cancer. They had a lap for just the "Survivors", that was touching, that's where the emotions kicked in. Then they did a lap with the Survivors and their families, so we all walked together. Just thinking of what these little kids have been through in such a short time is heart-breaking, but they are so much stronger for doing it.
Here are some pictures from that night.

Join Team Tommy!

Light The Night Walk is The Leukemia & Lymphoma Society's evening walk and fundraising event. It is the nation's night to pay tribute and bring hope to thousands of people battling blood cancers and to commemorate loved ones lost. We have put together a team, "Team Tommy" to help raise money for the cause. We would love to have as much support as we can, and if you can't come walk please donate at the link below. All of the money goes to the Leukemia and Lymphoma Society. It will be a fun and very memorable night. Thank you!

Friday, October 2, 2009 Sugar House Park 2100 S. 1500 E. Salt Lake City, Utah
Walk Distance: 2 miles Check In: 5:00 pm Opening Ceremony 6:00 pm

"Welcome to our Team's Homepage"

MaINtEnAncE!!!!!

We MaDe It! Tommy is now into where we've been trying to be for the last 6 months... Maintenance! What that means is we have made it through all the hardest phases, and he will be in the maintenance phase for the next 2 1/2 years. Tommy finished up the last phase, delayed intensification well. It was tough on his little body, but his counts were just high enough to move on. His ANC had to be above 750 and it came it at 800. We couldn't be happier. Tommy is really excited, we have talked about this so-called "maintenance" thing for a long time now, we're finally here and now he's just waiting for fireworks...don't worry buddy they're coming. While in this phase we can now travel, take his long-awaited Make-a-wish trip, he'll be able to start Kindergarten in the fall, his hair and his beautiful LONG eyelashes will grow back, and we can all go back to a semi-normal life. They expect his counts to stay between 750-1500, when he's healthy, and they adjust his medications to keep them there. So now instead of going up to the clinic once a week, we go once a month for chemo (Vincristine). Tommy was actually sad when I told him we didn't have to come back for a whole month, go figure? I don't know what we're going to do with ourselves..oh yeah, have a life!! He will still take a 6MP chemo pill everyday for the next 2 1/2 years, which isn't a battle anymore, he's an old pro at taking pills now. He'll also take steroids the first 5 days of the month, which he started again yesterday, I can't tell you how thrilled I am about that one..."Roid Rage" here we come! Then thursday's he'll take the methortexate chemo pill too. It still is quite a bit of medication, but they say the kids handle it well and feel much better with a lot less side-effects.
Dr. Barnette, Tommy's Oncologist asked me yesterday if Tommy was always so easy-going. I had to ask who he was talking about, then I had to laugh because Tommy has always been so strong-willed, and tough for me his entire life. Which I have to say in the last 6-8 months, for the most part he has gotten much easier to deal with. I don't know if that is with everything he has been through, or if he's just growing up a little. Dr. Barnette said he is one of their "Star Patients", everyone up there adores him and thinks he is so great. He is so proud and amazed at how well he has done through this whole process, and we are too. He has amazed me over and over again at how resiliant he can be and what a trooper he has been. There have been so many times when I am running or doing something hard, and I am so tired I want to quit, then I think of Tommy and everything he has been through and I know I can do it. Tom and I have talked about many times we want to quit because life is hard, and this or that sucks, then you think about our little Tommy who is battling this cancer with everything he's got. He is truely our HERO! What an inspiration, and to only be 5 years old. Imagine the story he's going to be able to tell when he's older.
These are pictures form his Preschool Graduation last week. It was a great program by Miss Marilyn at Corner Canyon Academy, we love her and her little preschool. They have done so much for our family and for little Tommy. She has cried so many times when I would go pick him up, she loves that little boy. I was so grateful for the times he was able to attend preschool this year, which weren't many. It was a heart-breaking performance, they sang the cutest songs and I think I cried the whole time. I couldn't help but think that we were so grateful that Tommy could be there to finish preschool. We are so proud of him. Thank you Grandma, Grandpa and Grandpa Lou for coming, it was great to have you there. And to my sweet parents, we missed you and know you would be there if you weren't a half a world away. Thailand is so lucky to have you!
I am amazed at the strength I have had to get through this ordeal, I am a very emotional person most of the time. At the beginning of all of this, back in december when Tommy was first diagnosed, I thought there was no way I would get through this. There were so many nights I would sit and cry and beg Father in Heaven to take this away from him. One night in particular I remember well, it was the night before we were going to be told the diagnosis. I knew deep down that he had Leukemia, but I so wanted it to be some random virus with the same symptoms. I layed there in the hospital by Tommy and prayed longer and harder than I have ever prayed in my life for this to not be Leukemia. The only people I had known who had leukemia was my Uncle, and my great-aunt, who both passed-away from it. So the little knowledge I had about this disease at the time wasn't good. As I laid there and prayed, I was in tears as I felt the comforting power of the Holy Ghost who told me everything was going to be ok. And from that moment on I knew Tommy was going to make it and he would be fine. I felt from then on my burden was taken from me, and that the Lord would carry it for me. I am so grateful for the Atonement, it gives us the strength to get through some of lives hardest trials because our Savior has chosen to bear our burdens for us, if we'll let him. This whole process has been an amazing test of our faith, and our strength as well. We have been through a lot in the last couple years both financially, in our own families, and with friends, but when the health of your child is at risk that is the most important thing. I pray that all the relationships we have and have had will one day be mended, we love our families and friends very much. May God continue to bless our little family and yours as well. Thank you for all you continued support and prayers. LIVESTRONG!

Almost there.....!

This last couple of weeks have been really intense with Tommy's treatments, hence the name Delayed Intensification. Last week we started Thursday with a new regimen, new chemo pill that he takes for the consecutive 14 days, he was given a couple new IV chemo's as well. One is called Cytoxin, which takes about an hour to run through because it is so toxic, and the other is Ara-C which he got last Thursday and the following 3 days, through Sunday. We do the same thing starting today again too, and get chemo thru Sunday. The main side effect for these are nausea, hair loss (what hair?), and low blood counts. Today we went up for some more fun up at Primary's, and got some more chemo. Tommy had to get a blood transfusion again, his hematacrit was low. It is always scary to have to watch them do that, they warn you of course of all the side effects like an allergic reaction, fevers, fainting, nausea, difficulty breathing, paleness, chest pain, oozing at the site (mmmmm...). The nurses watch him very closely while you're there, doing vitals every 15 minutes, for the hour and a half. Then you have to watch him closely at home for the next 24-48 hours. That's when it scares me, when he's home and he has some wierd reaction. He'll be fine, right? So we ended up staying there today for 7 hours! We watched a few movies, ate some lunch, played video games, teased the nurses. And the funny thing, when it was time to go home, Tommy still wasn't ready. I think he should just move in up there, and we can visit. He is so happy there, probably because he gets whatever he wants, and gets to watch movies and play video games all day which he doesn't get to do at home. The nurses and doctors do love him though, how could you not. It was so cute after he got his blood, all the nurses were coming over to see him and saying how pink his cheeks were. I don't know if it was from the blood or if he was blushing, so cute.
He has had a good couple of weeks, only one sick day and lots of running around with buddies. The chemo's haven't bothered him too much yet, other than his low blood counts. I love talking to Dr. Barnette whenever we go in, he is so optomistic, he says he'll just fly through this. Usually he does, but this next couple weeks I'm a little more nervous about. The GREAT NEWS is.... We get 2 weeks off from clinic for him to recover and his counts then...Da da da da.... Off to MAINTENANCE!!!!! As long as his ANC is above 750 he can go into maintenance, and then life will get "SO MUCH EASIER", at least that is all we keep hearing. It better!!! We are ready to have a little more of a life. This has really tied us down a lot, not a lot of traveling, Tommy has missed out on a lot of opportunities, and we have to. It sure has been a blessing at the same time though, in all honesty. It has taught us a lot about what life is all about, not to waste it away. We have all tried to be a lot healthier, and to love those around us with all of our hearts. I hope we can remember this experience and grow from it, and to always remember what we have learned from it. That is the only way we will learn in this tough life, if we smile through our trials and learn from them. "Come what may and love it", right?
I am so proud of Tommy. My little 5 year old has taught me more than I ever thought a little boy could. He is so strong, and he never complains, his attitude is so great and he just never gives up. I won't ever let him forget that either, NEVER GIVE UP! After this experience that kid can get through anything. He is and always will be my HERO.
One more thought, we have started a team for the Light the Night Walk, it's called Team Tommy.
Light The Night Walk is The Leukemia & Lymphoma Society's evening walk and fundraising event. It is the nation's night to pay tribute and bring hope to thousands of people battling blood cancers and to commemorate loved ones lost. The date was changed to Friday Oct. 2 instead of Saturday because of General Conference. Join us, it will be a fun, and very meaningful night. If you can't attend, please donate to the cause. Thank you!
Here is the link:
http://pages.lightthenight.org/ut/saltlake09/TeamTommy

The New "Do"... Just in time for Summer!

Tommy's hair has been falling out like crazy the last couple of days. He would wake up and there was hair all over his pillow and blankie, when we washed his hair half of it was gone when he got out of the shower. He had had it with hair all over him! So yesterday I called Tom and said you need to come home and shave Tommy's head, ASAP! I asked him if he wanted me to call all his cousins and friends over again, and he said no he didn't want everyone watching him this time. So it was just the family. It was quite emotional, I was surprised it was that hard the second time around. I think because you think of all that he has been through at such a young age, and what a trooper he has been the whole time. I am amazed at his attituda, besides being on the steriods the last couple weeks, he has been such a sweetheart and has grown-up a lot through this process. He looks so cute with his little bald head, I love to just sit and rub it it's so soft. I am looking forward to his hair growing back and to see what color and texture it will be next. It's a nice cut for summer, just have to lather on the old sunblock!

Update on Tommy

Tommy has really slowed down again, his treatment is really taking a toll on his little body. The last week or so he hasn't wanted to do much but eat and sleep. You gotta love steroids! I have had it with these steroids, fighting with Tommy to take 4 pills in the morning and 3 1/2 at night, and him eating all day and all night is getting exhausting. I am trying to be so patient with his moodiness, and trying to remember it's not him it's the steroids talking, but it is worse than a girl. We can't let Zachy cry or be his normal loud self or Tommy screams at him, the steroids must make everything much louder than it really is. He gets headaches daily from the side-effects of them. The only thing Tommy wants right now is quesadillas, yesterday we ran out of tortillas, you would have thought it was the end of the world at our house. He was yelling at me to go to the store first thing in the morning to get more. He ended up going to his buddy Kolsyn's house and told Tifini he had to have a quesadilla...Thanks Tiff, you're a life-saver! So by the end of the day, he had had 6 quesadillas. He has put on some more weight, he looks cute and chubby. He doesn't like to tell me what he wants either, it's all a mind game...ahhhh! Sorry just had to vent. The last few days have put me over the top! Bless his heart, he is miserable I understand that. I am just really looking forward to Thursday when we are OFF these steroids again.
I love that little boy, it is so hard to see him suffering this way. The last week he's been really sick, achy, and tired. If we can just get through about the next 5 or 6 weeks we're in good shape, they'll be the toughest 6 weeks we've had so far. At least that is what the doctors, nurses and the Jamieson's tell us. We'll see, maybe it won't be as hard as they anticipate. But I am prepared ( I think) for the worst, just in case. As long as Tommy doesn't get any funky viruses or the swine flu, he should be alright.
Thank you all for your continued support. We love you and are so grateful to all our families and friends for being our rock through this trial. We are so fortunate to have the gospel and for all the blessings it brings into our lives. We thank our Father in Heaven everyday for our little Tommy. Please continue to pray for him.

Sand Dunes!

Tommy is heading into a real tough part of his treatment, and we wanted to get away while we still could. So we took a quick weekend trip to the sand dunes, a little get away for Tommy and the rest of us of course. We haven't taken these kids anywhere for at least 6 months. He hasn't been feeling great, and may starting to go downhill again. He was really excited to go, and really tried to have fun. It was tough to watch because usually that is Tommy's favorite thing, to go ride his 4-wheeler especially at the sand dunes. He didn't have a lot of energy like he usually does, but he still had a great time. The kids favorite part is to play in the "big sand box" like Zac called it.

Spring Baseball

Tommy is playing Spring Baseball, whenever he is up to it. This is the one game he has made it to so far, he had fun with his buddy Aiden. We hope he'll be able to play more games. Way to go Tommy!