The Day That Never Ends

Today was by far one of the longest, hardest days of our Leukemia journey.

Monday we went in to get labs, and chemo. His counts were really good 1400 or so. He was really good while he sat (for the most part) and got infused with chemo, which takes about an hour and a half.

Since his counts were so great we got the go ahead to get his port today. We were told to arrive at 7am since Ezra was the first scheduled case of the day. I awoke at 6am we left at 6:30, and were at Shands by seven. Its eight now, and I go and ask how much longer it should be, Ezra is getting restless and is hungry since he couldn’t eat or drink this morning.

I am told that there was an emergency with a newborn that needed surgery. I am told it shouldn’t be much longer. I realize these things happen, and I wasn’t upset, just annoyed because I had a hungry, angry toddler on my hand.

We finally got out of the waiting room at 9:30 and taken to pre-op. I am so happy because Ezra and I are falling apart. We get to pre-op and the pediatric surgeon comes by and tells me that there is another baby that is trying really hard to die. Well what do you say to that! So we waited some more.

They gave Ezra some baby Valium (versed) which worked for about an hour, after that…about 11 or so, him and I are both in tears. All patience is gone. Ezra is finally taken back at 12:30, only 5.5 hours after our scheduled appointment.

Ezra is taken away in tears, I leave and duck into a bathroom and cry myself.

The procedure didn’t take more then 2 hours, he got his new port, a lumbar puncture with chemo, and a bone marrow aspiration.

I am called back after he gets out, and I sit with him until he wakes up…which he never really does. He wakes up long enough to drink some juice and get Ted.

He just keeps sleeping, he has missed nap time, and had a really long awful day. We sit him up to start unhooking him from everything and he pukes all over himself and me.

Well, ok I can handle that, we are going home right? Wrong. Not so smart nurse forgot to order an x-ray for Ez, so we had to wait even longer for an x-ray and for a Dr. to check the x-ray out. It looks great. We are on our way.

Only to get stuck for 30 minutes in the Shands parking ramp, at this point, I just surrender and cry. Luckily Ezra is still sleeping.

We didn’t get home until 4:30pm. Ezra has thrown up at least 4 more times…on the carpet since being home. Luckily its mostly juice. I am still going to have to clean the carpet. I really need wood or tile floors.

The chemo has never made Ezra throw up before, so that was a new “fun” thing for us. I think it had something to do with him getting more anesthesia than he usually does.

He looks more sick then he ever has from the chemo also. Its hard to see.

But, we have a port (yeah!), and we got rid of the damn PICC line.

9 hours at the hospital with a 2 year old = no fun, no fun at all.

I will be in bed shortly…..

Update

We went to clinic today to get labs drawn to see if Ezra’s counts are high enough to get chemo. They were he is at 761, not the greatest but up from 500 last week. So he will be able to receive chemo tomorrow and a higher dose than he got last time (since his counts are higher).

We also were finally able to see the pediatric surgeon. He looked at Ezra’s wound site, and said it looked great. It is basically scarred over now. Thank you Anthony, for taking such great care of that wound!

So, on the 25th Ezra will go to the hospital to get a new port put in! Hooray! Assuming his counts are above 500. He will also receive another round of intrathecal methotrexate via a spinal tap. It all just happened to work out, so it will be one less time he has to go under, he will be able to get both done at once.

ANC down, but were going to Disney!

I bravely took both the boys to Ezra’s chemo appointment today, I hate to wear out my babysitting options, so I sometimes have been taking Rowan with us, I figure it helps him to understand a little as well.

Ezra’s ANC was hovering right at 500, but he was still able to receive his chemo cocktail. If his number would have been below 500, he would not have been able to get his chemo. If that happens they wait a few days and retest the blood and then hope the numbers have risen enough to get the chemo. It may happen next week, we will just have to wait and see. We are just living under the assumption that he is neutropenic this week.

Although his port wound is healing really nicely, he won’t be able to get another port until his counts come up, so we are kind of stuck in a conundrum.

While Ezra was getting his chemo, the life specialist came and talked to us. She told me that our family had been selected to go to a conference at Disney! They throw all of their Cancer patients name in a hat, and basically draw names. It sounds amazing, it is put on by the American Cancer Society, you can read more about it here.

Basically we get to stay for 2 nights free of charge at one of Disney’s Resorts, during Labor Day weekend. We will be able to attend different conferences about different topics, and meet other parent’s with children with Cancer. Then we get tickets to go to one of the parks! It is so wonderful, because we had a trip planned to Disney a week before Ezra was diagnosed, that we did not get to go on. I am so excited to gain more knowledge, and meet other parents. Not to mention the boys are going to have a blast! Even if Ezra’s counts are down, there are ways to work around it.

So that was super exciting news. We were at the appointment for almost 3 hours, and both of the boys were so great, they made me so proud.

In other news Rowan will be starting pre-school at the end of August. I am going in to meet with his teacher and the director of the center on Friday. Just to go over things I need to be made aware of, and I am writing a memo for the parent’s that they will pass out. I am super scared about all of the germs, but we are going to be really careful. It is impertinent that Ro starts school, he is just spinning his wheels at home. Every Dr. or nurse I have asked, they all tell me to put Ro in school. So I will try not to worry incessantly about chicken pox, and swine flu.

Well this has gotten really long. More updates to come soon. I will just leave you with a recent picture of little man.