Friday, June 26, 2009

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!

Thursday, June 4, 2009

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