The Waiting Game

Alex hasn't been able to eat anything since 8am - the doctors are trying to get him scheduled for surgery to put in a Port. Everyone has been so good to us here. This feels a bit like home (not sure I like that...).

Yesterday, Alex got to play with his sister for an hour outside. It was sweet to see how much they love each other, and how happy they were to see each other.

We have been kept busy with visits with friends and family over the past two days, and that has really helped.

We are watching WAY too much TV, and trying to nap when we can - we know all too well how hard it is to sleep in a hospital.

We still don't know exactly what we are dealing with - a relapse, or an unconnected second cancer, or a secondary cancer caused by the cure for the first. We are waiting for the chromosome tests - which take a while.

Our main oncology doctors have visited, and their warmth and compassion for our son is evident. They are great doctors, and I KNOW they will figure out what the best treatment is to rid him of cancer once and for all...

So, we wait, and wait, for answers, for treatment options, for the day Alex is cured...for good.

Port or Picc...

Many of you may remember, that I promised Alex that if his cancer came back, that I would advocate for a Port right away, so he wouldn't have to have a Picc line put in his arm. I hoped that I wouldn't have to make good on that promise, because he would never have cancer again.

I was so very wrong.

Eric and I are working with the doctors to get Alex a Port right away. Because of his blood cells, the surgeons want to consult before they move forward.

We are shell shocked over his diagnosis, and are dumbfounded over the change in the diagnosis from T-cell to B-cell leukemia. Does this mean that he didn't relapse? Does it mean he did?

Until we get the chromosome tests back about what possibly is going on with his body...we will start treatment as "high risk leukemia - B-cell ALL". We will be in the hospital for at least 5 days, and after that...I don't know.

We will know more in the coming days/weeks, and will update you all with more information as soon as we know something new.

Thank you all for your kind words - it means so much to me that there are so many Warriors out there - helping Alex beat cancer once and for all...

Alex is laying down quietly chanting..."cancer sucks...I hate cancer...cancer sucks...I hate cancer..." Such strong words from such a young boy - but truer words, I have never heard...

#$*!%

I decided the title to this post was not appropriate for the blog, so I will just say...I have been cussing like a sailor for the last 24 hours.

Last night, when getting Alex ready for bed, I noticed some red spots on his skin. This, along with a low grade fever, and some bruising, led me to believe that there was something wrong.

I couldn't even dial the phone last night. Eric called the on-call oncology doctor, and we were told to come in.

The tears started, and really haven't stopped yet. I don't know when they will.

Alex was diagnosed with Leukemia. Most likely a "relapse" of the Lymphoma he had before. We will be meeting with the bone marrow transplant team on Monday, to see what we need to do to find Alex a bone marrow match. I encourage all of you reading this to go to http://www.marrow.org/, and sign up to be on the registry. Even if you don't help Alex directly, you could help another family in need of a bone marrow donor.

The doctors say that the odds of surviving a relapse are "not good" - but this is Alex we are talking about - the strongest warrior I know. Since the odds aren't zero, someone survives - and that WILL be our Alex.

So, now you know the bad news. The good news is that there don't seem to be any leukemic cells in his spinal fluid.

The weird news, is that the pathology reports are coming back that this is a B-cell Leukemia. NOT T-cell, which is what we would expect in a relapse.

So...what the hell does this mean?!? Either the cure caused this new cancer, or it is unrelated, or the T-cell lymphoma was actually T and B cell...who knows at this point.

Our brave boy is stuck in the hospital again. His little sister is home without her brother. Eric and I are just sort of on automatic.

Thank you all for your kind words and support. This has come out of left field...he only had 5 months without Chemo, and we had JUST celebrated his "end of chemo" party 7 days earlier. During that party, I started to have some suspicions that something wasn't right, but I just chalked it up to being over sensitive. I wish that was true.

Right now, Alex has a fever of 103.0, and is being hydrated to try and flush the leukemic white blood cells out of his system, so we can transfuse red blood cells. His body has too many white cells, and if we tried to give him more red cells, his blood would become sludgy. So, we transfuse platelets, and monitor him closely to make sure his blood pressure, and oxygen levels maintain a good level, while we wait for the white cells to drop, so we can give Alex more hemoglobin.

I know there is more to say, but my brain is shutting off, and so I will close my computer, curl up in the hospital chair, and try to get some sleep.

We will know much more on Monday, and I will share his treatment plan as soon as we know what it is...

CANCER SUCKS

Back to "Normal"

Whew... it has been quite a while since I posted anything on here. I have started and stopped quite a few times, and could never finish.

It is hard to know what to say.

Some days, this battle seems like a bad dream, and it never really happened. Other days, it is so fresh in my mind, that I catch my breath, and try to keep my knees from buckling while the waves of sorrow rush through my heart.

Treatment is "over", and we just go to the clinic every six weeks for a "check-up". The phlebotomists at Doerenbecher have been wonderful. Drawing blood from Alex's vein has been a smaller "issue" than I had anticipated. He is again, our brave boy.

Now, when Alex gets a fever, we can give him Tylenol, something so simple, but off-limits during treatment.

When we learn that half the kids in his kindergarten class have the flu, or strep throat, we groan, and cross our fingers he doesn't get it, but it doesn't throw us into a panic like it used to.

His immune system is just about back to normal, and he has been given the go-ahead to get caught up on his vaccinations.

He also has been given the green light to go to the dentist, another thing he couldn't do while in treatment.

Now that his Port is out, we are comfortable with him playing sports. He joined a T-Ball team this season, and is doing great!

One of the "side effects" of going off treatment, is that Alex's metabolism, two-years in restraint, has taken off, and the kid eats like he is back on steroids. He is growing so fast!

Alex's Kindergarten teacher praises his work ethic, and his enthusiasm for school. We will keep fanning those flames for knowledge, so that if he runs into any learning difficulties left over from his Chemo, he will be able to overcome them, with the confidence he shows in other aspects of his life.

He has started to see a Play Therapist to help him with some anxiety/fight or flight issues related to his treatment. We are all very confident that his resilient spirit will overcome these challenges, and allow him to drink in a very long and wonderful life.

I have so much more to say, however the words aren't flowing from my heart and head to my fingers. So, I will let them rattle around a bit longer, until they are ready to tumble out in the right order.

Final Pill Video

Here is a video of Alex taking his final pill.

We are so proud of him!!!