More Chemo

Alex was feeling a lot better today. He went to school, and had a good time. We had some "Mommy time" before the doctors appointment today, but overall, he was real chipper.

So, of course that means that he was due for more Chemo. We had a 2:30 appointment up on the hill. We took the tram up, and made our way to the clinic. 

Accessing his PORT was a breeze, and his counts were awesome - his ANC was 8,100! We think he is fighting off this snotty nose that Tessa-Lynn has. The steroids can also contribute to really high numbers at first too.

When it came time to do the PEG shots in his thighs, for the first time he resisted a bit - not a lot, but a little bit. He was so brave, and didn't even whimper when the two 1.5 inch needles were plunged into his legs. Since we weren't sure if he had a reaction last time to the PEG, they decided to keep us for 2 hours to watch for a reaction. Thankfully, there was no discernible rash, and no breathing problems. While we waited for the two hours to pass, Alex received his Vincristine and Doxorubicine through the PORT. We were finally home by a few minutes after 7pm. 

As I was rocking with him at bedtime, the odor of the chemo was dancing in the air by my nose. We are imagining what these Chemo Cocktails are doing to the cancer, and watching the real effects that this Chemo has on his body.

He is my brave boy, and my inspiration! We love you Alex - we'll beat this thing yet!

A Heartbreaking Day

Today, Alex had school - he was so excited about going, that we actually got ready and left the house a full 30 minutes sooner than we needed to. Alex was chipper, and talking about his buddies at school, and what they were going to "be" at school (options are: Scooby Do, Spiderman, Batman, Luke Skywalker, Bo and Luke Duke, etc...).

I drooped Alex off at school, and brought Tessa-Lynn back to the house for a nap. Shortly after placing an almost asleep girl in her crib, I got a call from Alex's school. Alex was crying saying his tummy hurt. I grabbed Tessa and put her back in the car and rushed back to school.

As I walked down the hall to his classroom, I spotted Alex and his teacher sitting outside the door to his class. When he saw me, Alex just broke into more tears. He wants to play and be "normal" but his body is just getting beat up right now by all the poison running through his veins.

We headed for home, with Alex saying he wanted his Zofan, and then he wanted to go back to school. I didn't even get the kids out of the car seat, I just ran in the house for the Zofran, and gave it to him in the car. I drove Alex back to the school, and sat with him outside the classroom for about 15 minutes before he was ready to go inside. Alex is an affectionate child, but he has never clung to me the way he did today. I wasn't allowed to leave until Alex "dismissed me" at the end of class, leaving Tessa-Lynn and me to play on the playground with the bigger kids.

It breaks my heart in a million pieces when I see my brave boy cry. He is trying so hard to "be ok". He now tells me "Mom, I love you so very much" a few times a day. He works on making me feel better, even when his Chemo and Steroids make it just about impossible to function normally.

Dueling Side Effects

We have been dealing with the ugly side effects of Chemo medication now for a while. But this time, WOW, we really have dueling side effects which are causing so much havoc on Alex's 4 year old body.

The Dexamethasone (steroid) causes a serious increase in appetite. Unfortunately, the Doxirubicine (chemo) that he had on Thursday also causes nausea - so, we have a *really* hungry boy, who gets nauseated when he is even just around the food he so craves. It just sucks!

Heeeeee's Baaaaack!

Steroid boy is back.

We are starting day 3 of the steroids - and we are already starting to see the *lovely* personality "side effects". 

We still can't get him to swallow a pill - we've tried:

- Keep water in your mouth, then put in the m&m, and pretend it's a boat floating on the water. Now tilt your head back and let the boat float down your throat.

- Put the m&m in your mouth, then keep drinking until you swallow it

- Look at the bottom of the glass while drinking with the m&m in your mouth (to distract)

Nothing is working - we've got about 18 months left where he will need to take pills at least a few times a week, if not a few times a day. He hates taking the steroids with anything! And the longer he takes them, the harder he fights them - it's not pretty!

I can't wait for this first round of steroids to be over - 7 days on, 7 days off, 7 days on...

Oh, and here is your public service announcement for the day: Trying to wash the car with your 4 year old on steroids on a warm, sunny day is NOT advisable - I repeat, it is NOT advisable...

Delayed Intensification

Today Alex officially started the next phase of treatment: Delayed Intensification. This is the most aggressive phase of his treatment. His hair will fall out again (any time now), and I've been told this phase will really tax Alex physically.

I guess I was so eager to get started, that we got to the Clinic 6 hours early! (Actually, it was originally scheduled for 8 am, but they moved it to the afternoon knowing that Alex has school on Thursdays - they just forgot to tell me.)

Alex's counts were great - ANC of 1800, and very good Hemoglobin and Platelet counts. Again, Alex wow'd the nurses with his maturity while accessing his PORT, and getting his Chemo.

He received a back poke today - Methotrexate in his spinal fluid. He got his wonderful "sleepy milk" which sent him off to "la la" land during the procedure. Once that was complete, he was moved to another room, where he slept for another 1.5 hours. During his slumber, the nurse gave him his Vincristine, Zofran (for nausea), and the Doxorubicine. The nurse had to keep the Doxorubicine covered in a dark bag, since it can loose it's potency when exposed to light. 

Tonight, we started 7 days of a new steroid: Dexamethasone - it is in pill form, and he will be on for 7 days, off for 7 days, then on again for 7 days, etc. We tried again to teach Alex how to swallow a pill this evening - with no luck. So, we crushed the three and a half pills in sorbet, and got Alex to eat it. Lucky for us, this Dexaethasone tastes just as good as the Predisone did (insert tons of sarcasm here)!

I gave Alex a hug tonight before bed, and I could smell the Chemo already secreting out of his pores. That is one smell I cannot wait to eliminate from our lives!

We are cleared for our Memorial Day camp out, and it looks like Alex will be on a break during my sisters wedding in June (although he may have low counts then) - so things are looking up!

A New Blog Entry!

I've been reminded that I haven't posted a blog entry in over a week, so on this beautiful Saturday afternoon, I am sitting on my deck, enjoying the sunshine, relishing the quiet that only two napping children can induce, and catching you all up to date.

Last Friday, (well actually two Friday's ago), May 1st, Alex had his Chemo appointment. His counts weren't high enough to give the Methotrexate, but high enough to get the Vincristine, with no transfusions. I'm choosing to embrace the theory that he doesn't need that dose of Methotrexate, because his body responded so well to the lower dose he received previously.

The Vincristine does not affect counts too much, so his counts should be on the rise this week. His next appointment is on May 14th, so he'll have had almost two weeks with no Chemo - just the Septra on the weekends.

He is lively, spirited, joyful, moody, loving, challenging, funny, and sweet - we are truly enjoying these few days of "freedom" from the poisonous cocktail that runs through his veins.

This next appointment will mark one of the most intensive phases of his treatment, so aptly called: Delayed Intensification. In this phase, he will be revisiting all sorts of Chemo's from previous phases, plus experiencing a whole new batch. His hair will most likely fall out again - we've been promised a complete cue-ball (eye lashes, eyebrows, etc) this time around. Again, I am choosing to see this as a sign that these blasted drugs are obliterating any and all cancer cells in his body. 

His hair will grow back - he will get well - this is all just a bump in the road...