The Best Option

Last night was uneventful. We got to sleep, and besides helping Alex get up to use the bathroom a few times, we were able to rest.

The doctors had ordered a second Echo Cardiogram, since Alex's blood pressure had been so strange. Alex was not happy about this, since his experience on Monday with the first Echo technician was painful.

With the first Echo, we had told Alex that it was just pictures of his heart, and it wouldn't hurt. Unfortunately, the technician was focused on getting a good picture, and was pressing way to hard on Alex's ribcage. Silent tears ran down his face, as he tried to be brave, and not cry. We had to stop the procedure, and have the technician leave the room for a bit, while I lay next to him, and dried his tears.

So, when he heard that he needed a second Echo, he started getting really anxious. I told the new technician that he was apprehensive, and to be extra gentle. To her credit, she was hyper-aware of Alex's concern, and talked with him about everything she was doing. We got through the process without stoic tears.

What an amazing technology. I watched Alex's heart beating. I saw the blood flow in and out of that phenomenal muscle, as it pumped life for my son. I silently spoke to that image, trying to extract a promise that it would beat for another 90 years.

Later, our doctor came in and told us the results of the chromosome test for Alex's leukemia. It has the genetic marker, MLL, which means that this leukemia was caused by the cure for his lymphoma. Yes - the cure caused his cancer, and a bone marrow transplant is really the only way to cure him. But, this is better news than a relapse of his first cancer.

Eric and I have only one experience around bone marrow transplant. It was not a happy ending.

We know that this is the best option to cure him, and as we educate ourselves about the process, we will educate all of you too. The first step in that education came this afternoon, when we met with the bone marrow transplant coordinator. She had the nurses draw more blood so she can get Alex typed and start the search for a perfect match. It usually takes a few months to find a match, so the transplant will happen when he is both in remission, and the match is confirmed.

We are told that we may be able to go home on Friday - but our experience with the hospital tells us not to count on that until the discharge papers are in our hand.

A Very Long Night and Day

Today has been a bit of a fog...you see, I only got one and a half hours of sleep last night.

Around 10pm, Alex finally received all his chemo for the night. Soon after, the nurse started checking on him, and she noticed that his heart rate was low (under 60), and that his blood pressure range was really large (92/29). His temperature dropped to 96 degrees, and yet he complained that he was hot.

I was just standing there...there was nothing for me to do, so I crawled in bed next to Alex, and just tried to provide body heat, and comfort.

After doctors, and even the Head Nurse of the ICU came in to consult, everyone took, and wait and watch attitude. He looked a lot better than the numbers, so everyone was stumped (and still is)

About 5am, I was ready to crawl into my bed, and by 5:30am I was out, and so was Alex.

Morning came very quickly, and by 10am, Alex had seen all the doctors, had an EKG (which came back fine), and a chest X-Ray (no pneumonia, or masses). Alex was wired up and miserable about it. His vitals settled down during the morning, and he was freed from many of the wires. He also received another unit of whole blood this afternoon.

We had various visitors throughout the day, which is always nice, and the nurses agreed that while Alex was awake, they could "unplug" him from almost everything, except the saline drip. Now that we are ready for bed, they will hook him up to the machines, and monitor him all night.

More steroids today - Alex's face is starting to get really puffy again. It is so hard reliving this again - but not knowing the plan just tears me up.

We are just waiting, and waiting for the chromosome tests to determine which path we take. We are hoping to rule out a relapse, since Alex had T-cell lymphoma and now has Acute Pre-B Lymphoblastic Leukemia (Pre-B: ALL). A non-relapse would increase his odds of survival significantly.

Eric is home with our sweet daughter. I can only hope that we can all be together as a family sometime soon.

Still pinching, and hoping this is all a horrible dream...someone please wake me up.

Night Time

The sky is dark out, Eric has gone home to get some decent sleep. Alex is watching Scooby-Doo, while we wait for his first round of chemo to begin.

Two toxic poisons, both which would severally burn the skin, should it leak from his Port, will be pumped into Alex tonight. By tomorrow morning, Alex will have received: anti-nausea medicine, anti-anxiety medicine, Dexemethasone, Vincristine, Donorubicin, anti-uric acid medicine, anti-phosphorous medicine, antibiotics, whole blood, platelets, and a constant saline drip. He has also already had surgery, morphine, oxycodon, alabuterol, propofol, and other anesthesia medication.

My head is swimming, and it is hard to think clearly...I think I will go shut my eyes for a moment before the circus of chemo begins...

Port In

Alex has a cough...hell, we all do - we have had it for over 2 months...

While coming out of anesthesia, his poor body was coughing so hard, that even with his transfused platelets, he had tiny blood vessels burst in his face from the force of his cough.

The Port is in, and he is now resting comfortably, watching Scooby-Doo, and eating popcorn (his request...)

The chemo is starting in a few hours (probably between 7 and 8pm tonight). While I am anxious to get started, we are devastated at having to go down this path again...

In Surgery

We just gave Alex kisses, and watched him get wheeled into the operating room. Alex is getting his Port today.

At least I was able to keep my promise.