Eight months later...

Whew! We've almost made it. The end of weekly chemo treatments. The end of Delayed Intensification. Today Elena will receive her last chemo treatment in Delayed Intensification. And today it is exactly eight months since she was diagnosed. Pretty fitting, eh? I remember sitting with Eric in Elena's very first room on the ICS floor and trying to guess when we would get here. The fastest we could get here was in six months. Nine months to a year seemed more probable. And here we are eight months later.

Elena in the middle of DI

I've been wanting to type up this post for several days now, but I've been afraid that I would jinx us or something. :) DI hasn't been without its bumps in the road - especially now in the last half (which is different than I was expecting), but it has been MUCH, MUCH, MUCH better than I was fearing it would be. We have been so blessed. I marvel daily over how blessed Elena has been throughout all her treatments.

I don't know if we've mentioned this before or not, but she has High Risk Pre-B ALL. When you are diagnosed, you are placed into a risk category that determines what protocol they will use to treat the leukemia: low, standard or average, or high. There are a number of factors that determine where you are placed (age at diagnosis, white blood cell count at diagnosis, etc.), but Elena was placed in the high-risk category because of her incredibly high white blood cell count at diagnosis (80,000). "High Risk" refers to the fact that she is at a high risk to have her leukemia come back after treatment has finished. Because she is high risk, her treatment is intensified from the protocol for low and standard risk (which is a living nightmare already) - higher doses of chemo, more doses, more lumbar punctures, etc. In spite of all this, she has done so well. Her side effects have been minimal and she has been in good spirits for most of her treatment. It is a miracle. We are deeply humbled when we contemplate how much she - and we- have been blessed. But more on all that in another post.

What I really sat down to do right now was to give a quick update on Elena now that we are finishing up DI. She'll technically still have chemo raging in her system for another week to ten days after this. So, we're not totally out of the woods, but I think (knock on wood) that the worst is behind us. So here is the brief rundown of the last two months:

She has done really well through DI. We had the expected crankiness (well less of that then we had with Induction - which was a huge plus!), hair loss, overeating (that's an understatement), puffiness, extreme tiredness, etc. that comes with steroids. It took a bit to start, but when it did, she was pretty wiped out. She also had very high blood pressure that we battled with for a month, but it finally came back down. We also think there may have been some damage to her heart muscle (a side effect of one of the chemos), but we haven't had an Echocardiogram yet to check. By the time we noticed symptoms, she had already had all three doses of that chemo and there was nothing that anyone could do. We'll see. The steroids took a long time to get out of her system. When they finally did, she had a few side effects from the new chemo (which have opposite side effects - loss of appetite, nausea, vomitting, etc.). She was sick a few times, lost her appetite almost completely, and was very, very tired. It was quite a shock to go from her eating everything she could get her hands on to eating next to nothing and sometimes nothing. But par for the course. She got her eighth and final dose of Oncaspar (the medicine that many kids have an allergic reaction to and then can't take anymore) last week! She made it all the way through with no allergic reactions and was able to finish that treatment - hooray! Another little miracle.

This last week, she has been very sick - very nauseas and throwing up a lot and not eating much. Lily has also been sick, so it's hard to know what's causing Elena's sickness - chemo or a stomach bug. It would seem like a stomach bug except that it has been so random. She threw up pretty consistently for two days and then stopped for three days and then threw up again today. Who knows? Today was a rough day for her - she has been SO tired - she would just lay on the floor, moaning, and wouldn't even walk at times. She's also been pale, too. We thought she might be anemic and need a transfusion, so we got her counts today and they were low, but just above transfusion level. We'll see what tomorrow brings.

Eric accesses Elena at home (which is SO nice!) She is the most calm when they "do it slow" (as she says) and she talks him through everything. If she was older, I really think she could access her own port. She knows all the steps better than I do!

"All done!" she shouts in a half happy, half crying voice after the needle is in. Here she's watching the "strawberry juice" come out.

Nurse and patient. :)

Slightly nervous about that needle. :)

It's to transport the blood from the syringe to the vial that it goes to the lab in. We assure her that she's not going to get poked with it, but she's always a little nervous still.

I didn't start videotaping until they were nearly done, which is unfortunate. It was pretty cute hearing their banter back and forth as Elena told him what to do next. :) But, this is still something. (I'm retarded and I videoed it sideways - I always do that! So, you can just listen if you want.)

So, like I said, the last half has been a little rougher than the beginning, but still not too bad. (Easy for me to say, right?! Since I'm not the one getting pumped full of chemo!)

Yesterday, we noticed that Elena's head is just beginning to look fuzzy! Her hair is coming back - hopefully for good. We'll see. There are only two medicines that seem to effect her in the hair loss department and she is done with those for good. Again, we'll see. But it is so nice to see those signs of normalcy - to see her body fighting and restoring itself. It is a beautiful thing. That tangible, outward sign - as small as it is - brings me hope.

After this week, we just have to wait for her ANC and platelet levels to be high enough and then we can move on. Maintenance here we come!