Moving on to the next Phase!

This week we got some great news!! We had been waiting all weekend for the results of the repeat tests they had to do last thursday, this test was crucial. It would tell us whether Tommy was still in remission like they thought, or that he was one in a million that the leukemia comes back in the first month. So the doctor finally called us tuesday morning to tell us the good news. They couldn't find any signs of leukemia in Tommy's blood, that is such a blessing! We are so relieved and grateful for all of your prayers.
So the next step is starting the cosolidation phase, we started tuesday. He got his regular dose of chemo, the Vincristin and he will also have to take a chemo pill called 6MP every day for the next month. The side effects for this one are mouth sores (so fun), vomiting and nausea, skin rashes or acne, and low blood cell counts. So the next month sounds like it's going to be a lot of fun, so we are going to live up the next week or so until these side effects kick in. Unfotunately his counts will start to drop again, and he probably won't be back to school as much as he has been. He has absolutely loved the few days he has been able to go, to see his friends and feel like a normal kid again. I have to say I have loved the break too! We will have to go back to being very careful where we go, who comes over, and major hand washing!!
It is such great news that he is in remission, unfortunately it won't get a lot easier for at least 5 or 6 more months. A lot of you have been wondering what is to come. Here is a little rundown of what I know so far. These first 6 months (if everything goes as expected, without any major sicknesses or delays) Tommy will go to the hospital for chemo and back pokes, muscle shots, bone marrow biopsies etc. once a week. He will continue taking his chemo pills at home everyday too, and he takes an antibiotic also. Once we hit the maintenance phase, which is usually about 6 months into the treatment, Tommy will only have to go up to the hospital once a month for chemo. I think he has to take this chemo pill everyday too, don't know for sure, and the steroid will be reintroduced throughout the process for short increments as well. So that is as fun as our next 3 years gets!! As long as I can get through these first 6 months, we will be wonderful!! Heck, if i can get through this blasted COLD weather and actually go outside, we will be in heaven. We are a little stir crazy around here. There are only so many puzzles you can put together, stories you can read, movies you can watch, games you can play, and wii games we can beat before we start getting a little bored. I have to say I am pretty proud of myself, I have helped Tommy beat all the levels of Lego Indiana Jones!! Ya, I know I am not the gaming person, I have to admit that I did have fun. There were days that Tommy and I would sit and play that for hours, that is how pathetic my life has gotten.
I have learned a lot in this short 6 weeks, I have learned more patience, unconditional love, more compassion, I've learned a lot more about Leukemia through my hours of research, obviously how to play the wii, how to be a nurse, a mom, a waitress, a wife, a friend, and a crazy person all in one day! WE definitely have our good days and bad days. It's definitely not easy, and i wanna to roll over and die sometimes, but I figure if Tommy is tough enough to handle all that he is going through, I can do it too. It's all worth it, as long as my little guy is alright. We love you little Tommy, "TJ". You're gonna beat this thing...Kick cancer's butt!!

Kinda Frustrating!

Tommy has lost a little bit of weight this week, since we are off those nasty steroids, thank goodness! I can almost see those cute dimples, we miss those. His appetite has decreased a lot, hopefully it doesn't go down too much.
This week was hard, Tommy has been sick with a cold. He has had this croupy cough since about Sept. and it's just gotten worse the last few days. He was up all night a couple nights this week coughing, and having fevers. The fevers are the scary part because if his fever gets to be 100.3 and stays there for an hour we have to admit him to the hospital. Tom was working out of town monday through wednesday this week, so every night I would pray and pray that his fever would break so I wouldn't have to take him to the hospital in the middle of the night all by myself. And amazingly it did get to 100.3 one night, but broke before the hour was up. That was an answer to my prayers. We had to put him in the shower and steam it up, or take him outside so he could breathe, it's always a scary thing. Tommy wasn't able to go to school this week, so it made for a long boring week! I had a hard week, one of the hardest I have had so far I think.
So, we went to the hospital again yesterday, Thursdays have turned into Tommy's, Tom's and my least favorite days now. We were anticipating the results from the Bone Marrow Aspirite they did last week, that showed whether or not he had the MRD (Minimal Residual Disease). The doctor told us 2 things, that one he was MRD negative, which a is great, meaning that there were no signs of leukemia in his marrow. But contradicting this test is the test they do under the microscope, that isn't usually as accurate, this one showed that there were now 5%. The microscope is not as useful because it doesn't show the make-up of the cell, they don't know whether those cells are lymphoblasts or if they are newly developing cells. The doctor really thinks they are new cells, however they had to repeat the test again yesterday so they will know for sure. The results of this test are the determinate for the next phase, the consolidation phase. So for now, we don't know where we stand, we are either going to do 2 more weeks of the induction phase, and see where we are after that, or we will go on to the next phase (hopefully). He is hoping that he can rush the turnaround on this test so we will know by monday or tuesday, then they will start chemo reguardless. One nice thing about this is that we didn't have to choose whether we would continue the clinical trial or not. I never felt good about the trial, it extends the time until maintenance by 2 to 3 months, it's a lot more drugs and chemo's they are administering, and there are a lot more risks involved. And since it is a "trial" they don't even know whether it will help or hurt these kids. The doctor just told us that we will stick to the standard of care with Tommy, which has a wonderful cure rate between 88-92%. I feel a lot more comfortable with that, so that was a blessing. So when I find out the results I will let you all know which way we are going.
Yesterday was the first time that he didn't cry all the way to the hospital. He was being so brave about it, "so when we get there we go upstairs, then they check my weight, and then the nurse will put in my port, right? Mommy, I want her to count to 3 first before she does the poke, ok?" How cute is that? He was breaking my heart, and making me proud at the same time. It was the first time since we were staying at the hospital that he talked to any of the nurses or doctors, it was so good for them to see Tommy's cute little personality come out again. He was showing all the nurses his games, and how well he knows his letters, he was a little flirt yesterday. Thank goodness we are off those steroids because he had to fast until 1:30pm again. So up until he woke up from his anesthesia he was so happy. It was so nice to have him so happy and so cooperative! He even got to make SNOW in the RTU waiting room. We're going to have to get us some of that.
So while they were doing their procedures, the back poke and the bone marrow, Tommy threw-up a little while he was sleeping. They had to stick the dreaded tube down his throat to suction it all out, and of course they scratched his throat all up, poor guy. He was already struggling with a sore throat, and a cough, and he is awful when he wakes up for anesthesia anyway. Today was A LOT worse! Usually you can give him his food, give him a few minutes to wake up and he is alright, oh no, not today. He had a nebulizer on his face, so that made him mad, plus they scratched the heck out of his throat, and he was coughing terribly. He wouldn't take a drink or eat anything, he wouldn't let them give him any pain medicine, and he wouldn't talk or let anyone talk to him. Good Times! We love the RTU!
Hopefully we will have some good news soon. Thank you all for following this blog, it is so nice to know that you all care so much for our little Tommy John! We love you all and pray for your families health. I wouldn't wish this on my worst enemy, it is definitely a battle. Please keep Tommy in your prayers.

Back to School!

I promise I didn't force him to go, he just doesn't want to smile!


Tommy was able to go to school twice last week. Wednesday, he woke up at 6am ready to go to school, unfortunately school doesn't start until 11 so that made a long morning. When I dropped him off, the teachers were all so excited to see Tommy. They made sure the school was sanitized and that all the kids would sanitize their hands too. I talked to his teacher about everything, and she actually went through cancer too, so she is well aware of how careful you need to be with kids and germs. He went right into singing time with his friends and sat between his 2 buddies who also had their heads shaved. They both looked at him and had to do a double-take, they said "hey Tomy" and gave him a big hug! It was so good to see him enjoying himself, and being a normal kid again. He sat and sang the songs with the kids, had a big smile on his face. I was really nervous to leave him, it was like the first day of school all over again, only worse! They assured me everything would be fine, and they'd call me if anything happened or if he was too tired to stay. When I picked him up he was so happy, he had a big smile on his face. Miss Maria said Tommy fell asleep so they let him take a little nap, and all the little boys and girls whispered while he slept. How sweet is that? He was exhausted when he got home, ate lunch and then slept for a few hours. He went back on friday, and had a great time. He took another nap, so next time he goes to school I think I will send him with a pillow and his blankie. I'm sure there won't be a ton of days in the next 6 months or so that he will be able to go to school, so we are going to enjoy the ones we have. He was so happy to be able to get out of the house and play with his friends. A couple of the kids said,"That's not Tommy, he's a different Tommy". Tommy came home and told me that, he didn't understand why they would think he was a different Tommy. It was hard to see him affected by what the kids were saying, usually he doesn't care. He doesn't know how different he looks with all the weight he has gained, which is good. So I just told him it's because you don't have any hair, and he was ok with that.
So we are off of the steroids, yeah!!! So we are slowly seeing the "roid rage" disappear, and the appetite is still there, but will slowly taper off in the next couple weeks. His legs should start to regain their strength, the headaches should go away, and we don't have to take those darn pills every morning and night. So Tommy couldn't be happier that we are done with steroids, for now. They will reintroduce them in the 3rd phase of treatement for a couple weeks.
Last thursday they did what is called a "minimal residual" test, which detects if there is any leukemia left in his blood. They send this one to Seattle where they have way high-tech machines that can detect even the slightest amout left in his blood. We should get the results back before thursday. If there is less than .1% Leukemic cells left they will place Tommy in the "standard risk" group, and he will get standard, possibly slightly augmented treatment from here on out. If it is greater than .1% then he will be placed in the "high-risk" group and his treatement will be a lot more intense, and the cure rate goes down for the "high-risk" patients. Most of their patients are in the "standard" group, so we are PRAYING that he will make into that category! We will let you know when we find out. Also, thursday if he is placed in the standard group, we go on to the next phase of treatment which is called the consolidation phase, and get a whole new roadmap of the next month to two months. If the leukemia is still there, they continue with the induction phase, which is what we have been in this month, until they get rid of all that cancer. Good times!
This week we are enjoying having his ANC up to 3000, which is almost normal. So Tommy has been able to play with friends and cousins this week and has loved it! He has laughed and smiled a lot more this week too. It is so great to see him feeling and acting a little more like my little Tommy. And I have to admit, it is so nice to have a little bit of normalcy back into our lives, for now anyway. The doctors said it won't get easier for a long time, unfortunately, and his counts will probably fall all the way back to 100 this month. We are still practicing good hand-washing and careful of where he goes. For now, he is pretty healthy and we celebrate his good days. If you look at the whole picture and think that we have to fight this for 3 years, it gets quite overwhelming, so we take it one day at a time. Please keep Tommy in your prayers! This fight isn't over, it's only just begun. Thank you all, we love you and are so immensely grateful for what you have done for our little family.
BTW do you like the background, Tommy picked it. He thinks it's "Awesome!"

Hair was Flyin'!

Our Head shaving party was a HUGE success, we had so much support from our families, friends, and neighbors. Thank you all SO MUCH for coming to support Tommy, it really meant a lot to him. We ended up shaving way more heads than we anticipated. We had 26 boys and dads shave their heads. It was so fun to see all the little cousins and friends want to do it for Tommy, he has the best friends and cousins! It was emotional shaving Tommy's head , I think everything kinda hit home. He really looks like a cancer patient now. I am so grateful we have so much support for our family and our little Tommy, it is truly overwhelming! Tommy was so excited about his party, we had to end the celebration with FIREWORKS! It was a fantastic night, and all dedicated to Tommy, he so deserved it. Thank you ALL for coming and please thank your cute boys for shaving their heads in the middle of the cold winter for Tommy.
This week has been hard on Tommy. His body has weakened a lot, he can barely walk. One of the side effects the steroid has is that it weakens the bones over time, and it is definitely taking it's toll on Tommy. Thank goodness we are off that stupid steroid this week, I think. Also the chemo that he is on, Vincristin, causes the nerves to be super tender. So everytime you touch Tommy, it hurts. Everything on his body was hurting him today from the tips of his fingers to his toes, poor guy! We switch chemo's this month too, so that side effect will go away and then we get to experience all kinds of different side effects...GOOD TIMES! He didn't want to go to school Friday or Monday, we are hoping he will want to go tomorrow. As of today he really wanted to, I think it'll be good for him to get out and be with his friends. We'll let you know how that goes. The next 3 or 4 Thursdays he has to have Lumbar Punctures and Bone Marrow biopsy's to make sure that the leukemia is still dying. This week it should be gone, we are praying! If it isn't at 0.1% or lower Leukemia cells left, he will be placed in the high risk group and will have to undergo more intense treatment. Please say a special prayer for Tommy that it will be gone, so he won't have to suffer any more than necessary.
We love you all and are so extremely grateful for all your continued prayers, thoughts, messages, the meals that you all have been so generous in bringing by, the help with our kids, the cleaning lady you all have donated to (THANK YOU! THANK YOU! THANK YOU!!), being Brooklyn's taxi, coming over and forcing me to get out of the house, doing my laundry, cleaning my house, fasting for Tommy, putting his name in the temples, snowplowing our driveway, and just being there for us, whether we laugh, cry, or vent about how much we hate cancer. I can't tell you how much " We are thinking of you in these hard times" means to us. I can't express to you all our sincere gratitude. I have a hard time accepting help, I am working on that. Hopefully someday we can return the very much appreciated gesture you have all so graciously shown our family, let's just hope its under different circumstances. You will all be blessed for your charity. May God bless you and your wonderful families this year! THANK YOU ALL!!
By the way, I have some more great pictures of the whole group, my computer doesn't want to let me put them on. I will work on it.

Head Shaving Party!

So it's that time, Tommy's hair isn't going to hold on much longer, it's time for a haircut! We are having a little head shaving party for all those who want to come support Tommy, little boys, big boys, moms...hey you never know. It will be at our house this coming monday at 5:30. Bring some clippers if you have some, there might be a few going at the same time. We will have pizza and cupcakes to celebrate. Please let me know if you can come so I can know how much food we'll need. Hope to see you soon!

GREAT NEWS!!!

We went to the clinic today, just for chemo. We finally saw Dr. Barnette, our Oncologist. We haven't seen him since we were at the hospital, it was so good to talk to him. He is the Oncologist who is heading up the clinical study for Leukemia that Tommy is currently a part of. So everything is so much better hearing it first hand, and he is an incredible doctor, Tommy loves him. We have GREAT NEWS! The amount of leukemia left in Tommy's bone marrow is now less than 5%, it's only 1.2%, so has reached REMISSION!!! I can't tell you how happy we are, we have been praying, you all have been praying and our prayers are being answered. This is such great news, it isn't the end by any means, but it puts him into a great position for cure. The day 29 is a huge turning point, which will be on Jan. 15, they examine everything, do another bone marrow biopsy and then we have a definite idea of where we are going for the following 5 months. The test on day 29 will put him either in the low, standard or high risk group. Also his ANC went from 100 last week to 1200!!! When they told us this Tom and I about jumped through the roof! That is about where they want it to be after he hits the maintenance stage for the next 3 years, so that is SO GOOD! The doctor told us of course we have to still be super careful with sick people around him, good hand-washing, etc. but he can have friends over if they are feeling well while his counts are up, and he even said he can go to school. I don't know how I feel yet about the school thing, it's still very risky with him still succeptible to catching sicknesses, and getting fevers, but it would be great for Tommy if he is up for that. We might send him to school monday, depending on how he feels, and how I feel too,-scary! His ANC will go up and down a lot during the next 6 months, so for now we need to let him be a kid, send him to school, take him to a movie, etc. After our appointment we CELEBRATED! We took him out to Red Robin, and actually went inside. Tommy hasn't gone anywhere but to the hospital 4 1/2 weeks, so he was nervous. He first told us he couldn't go inside because of germs, but we said it was OK because his body was healthy right now. He ordered himself some mac n' cheese of course, fries, and a shake! And he so deserved every bit of it. We are going to take him to see a movie tomorrow, probably a matinee so there aren't quite as many people there. We couldn't be happier, and couldn't be more grateful to you all for your constant prayers, THANK YOU SO VERY MUCH!! Please continue to pray for him, this definitely isn't the end, but we are so happy to have good news!

Time for a Haircut!

Tommy's last mohawk for a while...

Today started out sad. We have been pulling on Tommy's hair everyday since he started chemo, and today was the first day that it started falling out. I was really hoping that he would be the one in 100 or so kids who's hair doesn't fall out with all this chemo, no such luck! I started to cry! Tommy was wondering why I was crying so Tom told him that he would start to lose his hair from the medicine he was taking. Tommy actually took it a lot better than I had expected, he just smiled and said OK. We told him we're going to have all his buddies and cousins come up to have a head shaving party for him, he liked the sound of that. So this weekend we're gonna be cuttin', so if you want to join in and support Tommy, he would love it. I am just glad that Tommy is a boy, I can't imagine how much harder it would be to watch your little girls hair fall out. It has been an emotional day for me. Tommy is doing fine, he's just eating mac n' cheese at 9:30 in the morning, that is after he had a huge bowl of Honey Nut Cheerios (he loves those), a banana, toast, chocolate milk, and juice. They're not kiddin' when they say these steriods make him hungry! It is so cute to look at him, he doesn't look like little Tommy anymore, his face is so chubby and his belly isn't so little anymore. We love his cute chubby cheeks, and he does too! Tommorrow we go up to the clinic just for chemo-thank goodness! Tommy couldn't be happier that we don't have to go back to the RTU tomorrow. He has prayed everyday that he wouldn't cry when they put the port back in, he's such a brave kid. I was thinking the other day about all the times that Tommy and I would fight, he has always been my toughest, strongest-willed child. It makes me so sad that we had to butt heads so much in the past, if I would have known Tommy would have to endure such a trial, I would have treated him a little differently. I am so sorry, and I know that he knows that and knows that I would do ANYTHING for him. Maybe this trial is the reason why he has been so tough his whole life, so that he would be prepared to fight this HUGE battle. I know that he has angels surrounding him, helping him get through this difficult time, because he handles everything so maturely for a 4 year old. I don't know how he could be as strong and sweet as he has been otherwise. With these steroids they say that the kids can either be really angry or really happy. The only time he is really angry is when we are at the hospital, other than that he has been such a sweetheart. He tells me he loves me all the time, and makes sure to thank me for helping him. Thank you all for your continued support for our family and our sweet Tommy. He will continue to need your prayers, it is what is getting us through this hard time.

A good day!

Tommy had one of the best day's he has had in a long time yesterday. It was so good to see him without constant headaches and tummy aches. We took him to his appointment in the morning, and of course once again he can't eat after midnight. For a kid on "roids" that is really hard to tell him he can't eat! So we got there and they accessed the port, Tommy did a lot better this time. I think he knew what to expect a little more. They drew blood, his counts are still ok, he didn't need a blood transfusion once again which is great. Then we went down to the RTU, we only had to do the bone marrow aspirit. They still sedate him, but at least he wasn't as sore. When he wakes up after anesthesia he is a total monster, yelling at everyone again. After he ate his usual chicken nuggets while they gave him his chemo, and we were on our way. His ANC is still at 100, so we have to be very careful still of who comes to the house, and we are washing our hands so much they are cracking.
Tommy actually ran around with Brooklyn and Zac yesterday, he hasn't run for a couple weeks. He was making his funny faces and doing his chipmunk voices, we were all laughing at him. It has been so good to see him act more like himself. Hopefully in the next few months we will see a lot more of him feeling good and able to do more things he used to do.
He is really excited that next week he only has to go to the clinic to do chemo. He hates having to go to the RTU, can you blame him? He knows when he goes down there he has to go to sleep, and he never wants to go to sleep.
He was so cute today in his prayer, he said "bless me to be able to not cry when they put in my port next time, and thank you for mommy for not hurting me when she took off my bandaids". I got all teary-eyed. He has been such a sweetheart lately, along with the moodiness. He tells me he loves me all day long. All the sudden my little Tommy the trouble-maker has turned into Tommy the peace-maker, always telling the kids not to fight. He hates whenever any of us go anywhere. Tom has been by his side as much as he possibly can, when he has to go to work Tommy asks when he will be home all day. Brooklyn has a hard time going to play with friends because Tommy wants her here so much. And I have watched more movies the last 2 weeks than ever in my life because Tommy wants company while he's watching the. I really have enjoyed spending that time with him, anything I can do to make him happy!
Taking his pills and all his medicine has gotten a lot easier, Tommy has just kindof accepted it. He used to fight it like crazy, now he still hates the taste, but he will do it without a battle. He is such an amazing little boy! It is hard to believe that he is only 4, I don't know many 4 year olds that could handle this horrible, life changing disease as well as he has. I am so proud of him, he is my HERO! He gives me the strength I need everyday, I just think "If Tommy can do it, so can I". We love you little Tommy! You are a CHAMP!

Happy New Year!

So it is now 2009! What a year 2008 has been, hopefully this year won't bring us quite as many surprises. So tomorrow morning we are headin back to Primary's for our 3rd round of Chemo! He also has to get another LP and Bone Marrow test done, this was the week we were hoping to have off with those tests. The results of the bone marrow last week showed that Tommy has more than 5% leukemia cells left in his blood, meaning that he doesn't fall into the "early responder" group of the kids tested. Only about 15% of the kids fall into this category, but we were still disappointed that he didn't, it is discouraging. He was really doing well until this week, this week has been a lot harder on his body. He has been a lot more tired. Other than the time he spends in the kitchen eating, which is a lot of time, he has been on the couch. We have been doing naptime everyday, which is a dream, but he requires it now. It's amazing how in just a couple weeks, my little Tommy who is usually the craziest of all my kids is now the one laying around all the time. It breaks my heart to watch this STUPID disease wipe him out like this. Wish us luck tomorrow! Thank you all for your constant encouragement, it really helps. Thank you for your prayers, I know they are what is getting Tommy through this tough time as well as our family. My cute mom, grandma and aunts have put Tommy's name in just about all the temples around the country now I think. I know that is such a blessing, THANK YOU ALL!!!