Friday, September 25, 2009

All is well

Ezra did make counts yesterday, they were just a little over 1,000. So he got to have some vincristine and doxarubicin yesterday. No side effects yet from those.

Then today he went in for a spinal tap with chemo. He is so freaking amazing. I can’t even express it in words. He just takes it all at face value. Such an inspiration.

We came home and he ran laps around the kitchen. Nothing slows him down. It does my heart wonders to see that.

We start steroids again tonight, so ask me in a few days if I still think he is amazing. He will get 7 days on and then 7 days off of them. They were awful for him the first time, but he did have 28 days of them not 7. So we shall see.

Monday, September 21, 2009

No Go

We went in this morning to have Ezra’s blood drawn to see if his ANC had come enough to start Delayed Intensification. That was a no go, he went from 488 on Friday to 538 today, he needs to be at 750 to start. So his numbers are on the up, its just taking awhile. I asked if I should be concerned and the PA said no, that sometimes it can take awhile for their counts to recover from the previous phase. So we go back in on Thursday to retest. I will update then.

Saturday, September 19, 2009


Yesterday I took Ezra to clinic to have a echocardiogram done, and labs drawn. He has to have an echocardiogram done because the Doxorubicin can cause thinning of the left ventricle of the heart, so they make sure his heart looks good from the get go.

That test went well, the cardiologist gave his heart the thumbs up, to start Delayed Intensification (DI).

However the lab work wasn’t great. His ANC needs to be at least at 750 to start DI, his was at 488. He is still on the schedule to start DI on Monday, we were just told to come back in Monday morning to do another CBC to see if he could start as planned that afternoon. So were hoping his counts come up enough so we can.

I also talked at length with the PA about keeping Rowan in school or taking him out during this phase. He seemed to think it was more of my call to make, and that if Rowan got sick they could just both wear masks at home, which made me laugh out loud…like that would happen!

So I then emailed Ezra’s actual Dr. to ask his opinion, and his response was simple, he said if it was an option to keep Rowan home during this phase to do so, he said it is going to be a bad flu season all around, and keeping Rowan home would probably keep Ezra safer. So sounds like we will be pulling Ro out of school for the next 2-3 months, not a big deal in the grand scheme of things, but I know Ro will miss school, he is really loving going.

So that is were we are, I will update more on Monday.

Tuesday, September 15, 2009

Delayed Intensification…dun, dun, dun


We go in to clinic for labs on Thursday to make sure Ezra counts are good enough to start the next phase, called Delayed Intensification. If his counts are good he is scheduled to start on the 21st. This phase is the hardest, most intense phases of all them during his whole treatment. He will receive more drugs, larger amounts, and new drugs as well. It is during this phase that many kids need blood and platelet transfusions. His counts are also expected to drop a lot during this time, so infections are common, along with hospital stays.

We are preparing ourselves for a hospital stay or 2, so that if it doesn’t happen we are pleasantly surprised. We are taking the boys to the Florida Aquarium this week, for one last bout of fun. In case its awhile before we can go out in public. The phase is only 56 days, but many times there are delays when their counts drop too low, so it could be much longer.

Its been a nice break from Leukemia Land these last 3 weeks, we have had maybe one appointment, and Ezra has been great, despite his ear infection.

So for those of you (Mom, and Aunt B) that want the nitty gritty of the medicines he will be receiving here it goes:

Dexamethasone : (steroids) will be given orally days 1-7, and 15-21 (I better stock up on “IZZA”)

Vincristine : IV push on days 1, 8, and 15

Doxorubicin : (this one is new) IV over 15 min on days 1, 8, and 15

PEG-asparaginase : shots to the leg muscles either on day 4,5, or 6.

Cyclophosphamide : IV over 60 min on day 29 (I think this one is new too???)

Thioguanine : Orally days 29-42 ( I don’t recognize this one either)

Cytarabine: IV push on days 29-32 and 36-39 ( I don’t recognize this one either)

Intrathecal Methotrexate : spinal tap days 1 and 29

Phew, that is whole lot Ezra has going on over the next 56 days. Please keep us in your thoughts, I know this phase will not be easy on any of us. Once we are through the 56 days though we move into LTM (long term maintenance) for the duration of his treatment. We just have to get through this phase, and the worse of the chemo will be behind us.

Sunday, September 6, 2009

American Cancer Society ROCK Weekend

We left late Friday morning for Disney’s Contemporary Resort, to attend the ACS ROCK family weekend. The purpose of it is to get to meet other families going through the same thing, and to be educated through different informative sessions.

Shortly after we checked in we headed to the pool area, it was awesome, and the boys had a blast.

orlando 007 copy There were 2 different pools, Ro wore a life jacket and finally braved water over his head. My main reason for posting this picture though is to point out how pale we all are! I swore off sun a while back….cancer is so not cool.

orlando 036

There was a really awesome splash pad area.

orlando 056 copy

Both of the boys enjoyed that as well.

orlando 077 copy

Then the boys enjoyed the view.

orlando 090 copy

orlando 119 copy

Rowan has gotten to the age where it is very uncool to have your mom taking your he is trying to dodge my paparazzi skills.

orlando 125 copy

See….it was quite the view. Even though I highly suspect it was mainly man made.

We went to bed and woke up entirely too early to start the convention aspect of the trip. Some of it I found very informative, some of it not so much. I must say I was amazed at how little some of these parents knew about their child’s cancer. Ignorance is bliss I guess?

orlando 140 copy

That night we went with my friend Chrissy and her  younger son to Downtown Disney. I do not ever recommend going there in the evening, especially with children. It was crazy busy! I guess everyone heads there after the parks close. The one time I was there prior was during the day and it was nothing like the nighttime. None the less, it wore the kids and us out and we all fell asleep shortly after returning to the hotel.

orlando 160 We headed off to the Magic Kingdom in the morning, but let me tell you its not so “magic” in the 90 degree heat.

orlando 197 copy

We even had a Guest Assistance pass to get us to the front of lines, still we only went on a few rides. The boys were not all that impressed with them. Ezra and Rowan were both scared…we started off with “It’s a Small World.” Perhaps that was a tad overwhelming.

orlando 238 copy 2 Rowan really liked the Swiss Family Robinson Treehouse.

orlando 250

We did a few more of the interactive things for the boys, and by that time it was about 12. We were all hot, sweaty, cranky, and miserable.

So on our happy way home we went.

Do not go to Disney anytime from May-October…its too darn hot, and not enjoyable especially for the little ones.

We were so fortunate to be able to go on this weekend vacation, it was much needed by all of us.

Thanks American Cancer Society!

Tuesday, September 1, 2009

National Childhood Cancer Awareness

September is National Childhood Cancer Awareness Month, to read more about it, including how you can help visit here.