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.