Monday, November 22, 2010

742 Days

Seven hundred and forty-two days - that is how long Alex battled cancer. Tonight, Alex took his final pills, and we sang "No More Chemo For You" to the tune of "Happy Birthday".

I'm so proud of our family and friends, for all the support we have received over the last 742 days. I am so grateful for the organizations who helped our family through this war.

The war is over. Alex won, although, it won't be "official" until he hits 5 years post treatment. But, to us - the pills, the fevers, the unknown, the endless battle is done.

I will post some video of the final pills tomorrow. I am emotionally drained, and ready for bed.

Tomorrow we start a new chapter. Life AFTER cancer!

Go to hell cancer...go to hell....

Friday, November 19, 2010

Last Days of Chemo

I have had a really hard time starting this post. I'm not exactly sure why...I mean, we are almost done. Alex had his last IV Chemo on Wednesday, and will swallow his last pills this Monday night.

Eric and I both went with Alex to this last appointment. We took the Tram with a full sheet cake box full of six (yes, 6) batches of triple chocolate brownies for the clinic staff, nurses, and doctors who have taken such good care of Alex these past two years.

Everyone was awesome and the tale of the "mountain" of brownies spread quickly. All the doctors who had taken care of Alex came in to see him off. Then, the nurses sang an "End-Of-Chemo" song to the tune of "She'll Be Coming Round the Mountain". Then, they gave Alex a great Buzz Lightyear Walkie-Talkie set. Alex hid in my arms as the nurses sang, then was crazy silly again (that's what happens when you let him eat Brownies for breakfast).

I thought I would cry tears of joy, I thought I would be so emotional, but the truth is, I will see all of these people in 6 weeks for Alex's first blood check-up, post treatment. I guess it still doesn't seem real.

Alex will have a pre-op appointment soon to prepare to take out his Port. Then, on December 6th, he will be given "sleepy milk" one last time, and they will remove his Port. He wants to keep it, and asked me "will it be all slimy?". I told him I thought they would clean it up before they gave it to him.

We went out tonight, and selected a box for Alex to keep his Port in. He picked a nice mahogany colored jewelry box. He said he will save all his very special things in it.

Last night, Alex and I talked for a long time about his Port being removed. He is really nervous about it.

"How are they going to get my blood?"

I told him they will use a needle in his arm, just like he has seen Mommy and Daddy do it when we donate blood. His face turned ashen, and his eyes welled up with tears.

"Is it going to hurt?"

I told him we would use the same numbing cream on his arms that we used on the Port.

"I don't want that again, it hurt."

I looked at him a bit confused, as I watched tears roll down his face.

"Honey, does it hurt when you get your Port accessed?"

He said it didn't, and then frustrated, walked over to his toy basket, and my heart sank. He pulled out the arm restraint that he had when he was first admitted to the Pediatic ICU, when he had an IV, and then his PICC line.

"When I wore THIS, mommy! This really hurt, I don't want to do that again!"

The PICC line was the temporary IV in his upper arm, that had to be kept dry at all times, or the IV nurses would need to change the dressing. Since he wasn't even four years old yet, that proved difficult, and it had to be changed a lot. It hit me then, that he remembered that night just as vividly as we do. He remembers the night his life changed too.

"Oh honey, you aren't getting a new PICC line, and they won't be leaving the needle in. They will do a quick poke, draw the blood, and then pull out the needle right away."

That seemed to make him pause a moment, and then he looked me right in the eyes and said something that still makes me cry when I think about it.

"Mommy, if the cancer comes back, I don't want a PICC line, it hurt. I just want a Port."

I had no words at first.

Then, I looked him right back, and said that I didn't think his cancer was coming back. And, if it did, I would demand that he get a Port immediately - no PICC line for him.

This is one promise I hope to never have to fulfill.

Wednesday, November 3, 2010

Another Worry Gone...

We had Alex's counts checked today to see if he was responding to the increase in his Mercaptapurine dosage. His counts were down to 2,800 - so headed in the right direction. They decided not to adjust his dosage for these final 18 days.

While we were there, I asked about the results from the blood tests to check for precocious puberty. I was relieved to hear that Alex's hormone levels were exactly where they should be for a boy his age.

So, we just need to get him in the shower and wash his face more often - that sounds like a prescription I can handle!

Monday, November 1, 2010

No Worries About the Recall

I just got a call back from Doerenbecher. They have never used that manufacturer for their Methotrexate, and so Alex is NOT at risk, and they DO use filter needles to draw up all their solutions, so a safe-guard has been in place.

Let me say it all with you....

Whew....

One less thing to worry about!

Methotrexate Recall

I just wanted to give everyone a quick update - we are not sure yet if any of the recalled lots were used in Alex's spinal fluid. It's hard to get a hold of anyone at Doerenbecher. I'm sure they are just inundated with phone calls this morning.

Launi, another cancer mommy, calmed my fears a bit when she received information that the standard protocol is to use "filter" needles when drawing up the solution. So, until we know if one of the lots was used in Alex, and the filter size vs. the shard size, we don't have any more to report.

I'll be there in person on Wednesday for Alex's counts check. If I don't hear by then, I won't be leaving until I get an answer...