Done With Round #2!

Tommy was pretty nervous when we got there.

This is the port, and the Chemotherapy.


This is the oncology clinic



They give the cancer patients
free hats when they come in,
Cute huh!


Going back home!


Tommy went in for his 2nd round of Chemo on Saturday. He wasn't able to eat after midnight last night because they were going to have to do anesthesia for his routine treatment. We had to wake Tommy up about 6:30, which waking him up normally isn't the funnest thing, but to wake him up and tell him he has to go to the doctor, that's much worse. I told Tommy we had to go to the doctor last night, and he was OK with that, until today I accidentally said we had to go to the hospital, and he freaked out. It was altogether a tough morning.
We were supposed to be to the hospital at 7:30, that was the day after the HUGE snow storm. We left our house with plenty of time, the roads were ridiculous, even I-15 hadn't been plowed. It took us a lot longer to get there that morning, but we made it. When we got to Primary's we went to the 4th floor to the oncology/hematology clinic. When you get there they will always check Tommy's height and weight first just like at the doctors office. Then we had to access his port, Tommy knows we have to do that but doesn't know it involves a needle. We didn't want him to know, since he had the numbing cream we knew it wouldn't hurt, and we could distract him as they put it in. So that was the plan until this "Child-Life psycologist" comes in and starts talking to him about what they are going to do to him. We had told them before that Tommy would do better if he didn't know there was a needle involved. So the "psycologist" pulls out a doll, shows him how they are going to clean him, that was fine, then she pulled out the needle, and it was all over. Tommy was screaming at her and at us. So we asked her to stop explaining it, I think it was making it worse, I'm sure she didn't like that. So then the nurse came in to do the procedure and we had to hold Tommy down, luckily though the numbing cream did work, and he was fine as soon as the anticipation was over.
They drew some blood for the labs, then we had to take him down to the RTU (Rapid Treatement Unit) for another Lumbar Puncture and Bone Marrow Aspirate and Biopsy, and he will be sedated for both.The lumbar puncture is to make sure they keep the leukemia out of the spinal fluid. They have found in the past that when they only threated the perriferal arteries of the body with the chemo, they killed all the leukemia there. However, later the leukemia would be found hiding in the spinal fluid because not all of the veins and arteries reach the spine and the nervous system, since it's an entirely different system than the cardiac system. So Tommy will have to have quite a few back pokes, unfortunately. The bone marrow aspirate is to look at the bone marrow, since all the blood is made there, they make sure the marrow is making the blood correctly, and to see how much leukemia is left. Then the biopsy is where they go look at it in the lab. They do use large needles so after Tommy will be really sore, the first time the doctor did it she had to do it a few times because the marrow was dry, OUCH!
So as we were waiting for the anesthesiologist to come talk to us, all Tommy could think about was what he wanted to eat! He wanted chicken nuggets from Chick-fil-a and ketchup and string cheese. So we made sure we ordered his food right away so he could have it as soon as he woke up. Tom walked him back to the RTU and watched them put him under, he went right to sleep. The doctor said everything went well, as soon as they were putting on the bandaids Tommy woke up calling for us and for his food. We got right in there and helped him eat his lunch. It was so funny, he was extra mad not only from the "roids" he has to take, but from the anesthesia. He was yelling at everyone, Tom and I were trying so hard not to laugh, because if we laughed he'd yell at us more. He was so hungry he was inhaling the nuggets, he put the whole thing in his mouth everytime. Luckily there was a respiratory therapist in there with us, but she was quite nervous watching him. He enjoyed his lunch and a yummy slushee they have in the RTU.
After we had to go back up to the oncology clinic upstairs for his Chemo. They put the chemo in and pulled his port back out. Tommy did really well, he was happy to get the port out again. Then the doctor came over and gave us his lab results. He is actually doing well, usually on day 8 they usually need a blood transfusion, Tommy's was good, his hematocrit was 32.6L. If it's less than 20 they will do a blood transfusion. His platelets (the cells in the body that make blood clot) were at 53L, which is why he was having brusing when we admitted him. When we admitted him on the 15th, his platelets were at 9, his hematocrit was at 12 and his ANC (Absolute Neutrophil Count) was at 2.0. That is scary how anemic he was, thus the pale skin and the bruising, the constant leg pain is from the leukemia inside his bone marrow causing it to swell and push against the inside of his bones. Tommy's ANC, that is his ability to fight infections, especially bacterial infections. A normal ANC is usually about 3,000- 5,000, so when it falls below 500 there is a greater risk of developing a serious infection. Tommy's is only at 1.0 or 100 so his immune system is pretty much nothing right now. We have to be extremely careful with hand-washing and kids coming over to play constantly, but especially now with his counts being so low. His WBC (white blood cell count) the infection fighting cells, is only at 1.8 right now too, which when we admitted him they were only at 2.4 which is why his croup wouldn't go away for about 3 months. It's all starting to make sense to me now, if only we had known a little earlier.
On the way home, Tommy was still hungry, we had to stop at McDonalds for some more chicken nuggets! They aren't kiddin when they say these steroid make you hungry, Tommy's going to eat us out of house and home. It's funny he's thinking of his next meal as he is eating the first. The other day we were drawing and he kept asking me to draw pictures of food. They say this month he will probably gain a couple pounds a week, which a great because I'm sure down the road when we switch chemo types, he'll start losing weight.
Yesterday was a crazy day, I for the first time in at least 2 weeks was going to go back to the gym. Tom stayed home with the kids, and he said take your time, you need it. I was so exicted to get away and get some exercise. Before he left he said make sure you check your tires because my tire has been leaking. So in my car is a PSI sensor, which is a dream. I checked it and it looked good so I took off. On my way down, Tom called me and said Tommy had a rash. He said he'd take care of it and call the clinic and ask them what to do. I was a little nervous to keep going, something told me to go home, of course I didn't. I knew Tom could handle it, and if it was serious I had my phone, I could come right home. Tom called me back and told me he was fine, they just said to give him benadryl. As I was on the phone, I was getting on the freeway and felt my car shake and start driving funny. I look down at my PSI thing and it says right front tire 3 then 2 then 1. I had a stinkin' blow out! I think I may have cussed, I'm sorry but it felt like everything that could go wrong in my life was. So I pulled over started crying and called Tom. Tom said he'd get someone over with the kids and be right down. As I'm waiting for Tom, three huge plows come by my and cover me with snow, not just once they came twice while I was sitting there, nice huh! My cute neighbor Sara came over to watch the kids, Tom came down to my rescue.
We did have a good night, Tommy felt well other than his constant head-aches and tummy aches, which are common side affect of the disease. Our sweet friends the Otts came and brought us a yummy dinner, thank you Janelle! Tommy has been a lot more tired than usual, he has gone back to taking naps everyday, and he's actually not fighting them. He has had fevers on and off the last few days, nothing too high yet. They say if he has a fever of 100.3 for an hour you have to take him to Primary's and they give him a general antibiotic. They treat all everything as if it's a bacterial infection until they can find out exactly what it is. And if they can't get the fever down or if his counts don't look good, they'll admit him. So we are hoping he can get rid of these fevers.
Today he's kindof bored, I am too. We are sick of movies, games, puzzles, coloring, and laying on the couch. If you have any ideas of things he could do that don't require too much energy let me know, it's going to be a LONG winter! We love you all and appreciate everything you have done for us. PLEASE KEEP TOMMY IN YOUR PRAYERS!