Wednesday, December 9, 2009

Way To Go Sweet Boy!!!

Tomorrow Ezra will start the long term maintenance phase of his chemotherapy. When we first got the leukemia diagnosis it was so hard to envision ourselves getting to this point. Don’t get me wrong, long term maintenance isn’t going to be all rainbows and unicorns.

For the next 2.5 years he will receive chemo every day in the form of a pill, steroids 5 days a month, spinal taps every 12 weeks, and Vincristine once a month. We won’t be up at the clinic nearly as much, but the harsh reality won’t fade, with the daily chemo pill reminder.

Words really can’t express what Ezra has taught me in the last 6 months. He is the bravest person I know, and he is 2. I am honored to be his mother, and I would say I was proud of him, but that wouldn’t do it justice. It is beyond pride. So instead I will leave you with a little video I have made with clips from the last few months.

I apologize, the quality isn’t the best, it was taken with my point and shoot. But you will get the gist of it, and maybe you will see what makes him so special too.

I love you sweet boy, keep kicking cancer’s ass!!!

Thursday, December 3, 2009

Week Delay

Ezra did not make counts yesterday, his ANC was 450. So we go back next week to retest his blood, and hopefully at that point he will be able to start long term maintenance.

Friday, November 13, 2009

Goodbye Delayed Intensification!


Today was Ezra’s last in clinic appointment for Delayed Intensification. He has one more pill left over the weekend and then he is done with that phase of chemotherapy! Yeah!

So to celebrate Anthony took the boys out to fly a kite. They flew it for about 15 minutes before it “flew” away.

We go back on Tuesday to test his blood, to make sure he isn’t in need of a transfusion. So far the blood looks good, his ANC is 760.

Ezra will take a couple weeks off for his counts to recover.  He is scheduled to begin Long Term Maintenance on December 3rd.

I asked for a copy of his next phase and on the bottom of it they had hand written in his “end of treatment” date, 7/21/2012.

While that date is awfully daunting, that is the first time I have ever even seen it. And its by no means written in stone, it was just nice to have a reminder that this chemo will end someday.

Friday, October 23, 2009

Week Delay

We went into clinic today to get Ezra’s CBC done. His counts only rose like 20 points from Monday. His ANC was 590 today. He needs to be at 750 in order to start the next phase, I guess they want it higher because it knocks it down so much.

So they said we should come back in a week and get another CBC done. He hopefully by then will be up to 750, and we will be able to resume that Monday.

It is very common to have delays during this phase so I am not stressing it. Although it will be nice to have a break from the clinic, it just delays us getting through delayed intensification, so that is kind of a bummer.

Tuesday, October 13, 2009

In the Hospital Again

Sunday night I took Ezra’s temp. and noticed it was low…about 97.2. So I called the on call oncologist, she said as long as it didn’t go below 96 and he was acting normal that he should be fine.

Well Monday his temp. dipped to 96.5 he was terribly cold and clammy, and wanted to sleep all day long. He was waking up sweaty from every nap. So I called again to just ask someone else’s opinion. They basically said the same thing, only that was Monday morning, before he slept the day away.

The nurse called me back at 5 to make sure Ezra was doing well, I told her he was still cold, and had slept all day. She put me on the phone with one of the oncologists and she recommended I bring him in, just to rule out infections like sepsis…which can cause a low body temp. And since he was pretty lethargic all day she thought it was best he be seen in the ER.

So off we went to Shands. We were admitted right away. Blood drawn, antibiotics started. His ANC last light was 680, this morning it was 360. So he is officially neutropenic. His blood otherwise looked good though, so no transfusions at this time. The low ANC is to be expected for where he is at right now in his treatment. His temp did go up to 98.1.

I talked to an actual oncologist this morning (a new one, apparently Dr. Bill is on temporary hiatus in China). She gave the ok to stop the IV fluids since he is hydrating himself.  She said as long as nothing came back on the cultures by tomorrow night, we could go home then. Which you know really means the next day.

So Ezra is doing ok he is tired and crabby, since he is still on the steroids right now. Thursday night is his last dose of them for awhile. Thank God.

So far there is nothing to worry about, they are just super cautious with kids during this phase since the chemo is so intense.

Hopefully nothing grows on the cultures and we are home soon.

Thursday, October 1, 2009



Today was not so much fun. I went in this morning (with both boys) to get labs done, even though I apparently didn’t need to, he would have gotten this chemo round regardless of his counts.

I comment to the nurse that I didn’t put the numbing cream on his port because he was shivering this morning. So she asked more about the shivering, I told her he woke up yesterday morning shivering as well. I attributed it to the sudden drop in temp. in FL the last 2 days. She went on to tell me that while Ezra is on steroids he can still get an infection and not run a fever. But exhibit other symptoms of a fever, chills, sweats, etc.

So we get his CBC and they draw blood cultures, they hook him up to a bag and wait for him to pee. They have to test for everything.

So while we are there they just decide to go ahead and order Ez’s chemo up, so there I am with both boys at the clinic, my shirt was on inside out, no make up, and I had forgotten a hair tie. And no coffee. I thought we would just be drawing blood, going home and Ezra and I coming back by ourselves in the afternoon for our scheduled appt. No such luck.

His counts come back great they were 1300, so he was not in need of blood, which was one of the things they were concerned about.

So Ezra got his Vin and Dox and some super duper antibiotic. We should hopefully know something more tomorrow.

One of the things he could possibly have is a urinary tract infection. From talking with them and based on some things he has done lately (like yesterday he grabbed his diapered crotch and said “hot”…which really confused me) I think this is what he has. Which would be treated with antibiotics. I am hoping that is all it is. They were not too concerned since they sent us home.

I will update tomorrow whenever they call me.

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.

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There was a really awesome splash pad area.

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Both of the boys enjoyed that as well.

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Then the boys enjoyed the view.

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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.

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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?

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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.

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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.

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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.

Tuesday, August 25, 2009

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…..


Thursday, August 13, 2009


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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.

Tuesday, August 4, 2009

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.


Saturday, July 25, 2009

Interim Maintenance

Friday morning I awoke once again with the birds, Ezra and I headed over to the hospital to have another PICC line put in. I was really upset to find out that because he was out patient he wouldn’t be receiving any sedation, not even conscious sedation (versed).

We waited for an hour while some numbing cream sat on his arm. Then I had to take him back to what looked like an operating room, and leave him there, with a bunch of strangers. I felt like I had been punched in the stomach. Every other time he has been taken away from me he has at least been on some sort of mild sedation. I just kept thinking about how scary it must have been for him. I really hope he forgives me for all of this some day.


They were able to place the PICC line in and we headed home.

Later in the afternoon we went back to clinic to receive chemo. After another hour wait, they finally just decided to give Ezra his chemo, we were waiting for a seat in the infusion room, and a seat never opened up.

Ezra started Interim Maintenance on Friday. It is 56 days long and will consist of the following.

Vincristine, & Methotrexate (chemo) through his IV on days 1, 11, 21, 31, & 41.  Then another lumbar puncture with Intrathecal Methotrexate on day 31.

So we at least get a break from lumbar punctures. He also is only taking one medicine orally and only 3 times a week. Which I know he is grateful for.

Side affects for this phase are mostly lowered ANC, mouth sores, and nausea. He is too young to receive the anti-nausea medicine they typically give to older kids. Something about it causing seizures in babies. So lets hope he doesn’t get nauseous!

Thursday, July 23, 2009

PICC this

Well we went and saw the surgeon today, and he thought that the wound would be healed enough in another 2 weeks or so. Then they would put another port in. They are just being super cautious with the second port, so we don’t have to have a repeat port infection.

Tomorrow, bright and early I have to bring Ezra into the hospital to get another PICC line put in. They don’t want to delay his chemo incase his wound ends up taking longer to heal than they think.

Assuming the PICC placement goes well, Ezra is also scheduled to receive his first rounds of chemo in his next phase, Interim Maintenance.  I will explain that more in detail tomorrow.

I can’t wait for this week to be over. I am sure Ezra feels the same.

Wednesday, July 22, 2009

PICC line is out

Over the night last night Ezra somehow managed to pull his PICC line out. Lovely. So we went in to clinic today to have them look at it. I was not sure if it was pulled completely out….it was.

They sent us over to get blood drawn, they wanted to check his counts, and to get certain levels for the chemo he was supposed to receive tomorrow.

So after waiting for 45 minutes to get lab work done, they lost our papers. It ended in me being irate in tears, talking with the lab manager. It wouldn’t have been so bad but I had both boys, a 2 and a 4 year old….we all lost our patience after about 20 minutes of waiting.

We then went back and waited back at clinic for his lab results. Anthony came and relieved me so I could at least get Rowan out of there.

Tomorrow we have an appointment to meet with a pediatric surgeon. He is going to look at Ezra’s wound and decide whether or not it is safe to put another port in. If so he would probably have surgery Friday for that. If not, we may put off his chemo for a week and then put a port in the following week. If the surgeon thinks its going to be longer then 2 weeks to heal, he will have to get another PICC line put in.

Ezra’s counts are great right now, so it would be an ideal time for him to get another port put in. We hate the PICC line with a passion, and really do not want another one.

I will update tomorrow after our appointment with the surgeon.

Tuesday, July 21, 2009

What’s In a Number?

Our next three years will revolve around a number. The number is called an ANC (absolute neutrophil count). ANC is a measure of how many neutrophils are present in your blood.

So by now you are probably wondering what the heck is a neutrophil? A neutrophil is a type of white blood cell that help fight infection.

The chemotherapy Ezra is receiving will often lower his ANC, drastically so sometimes.


A normal healthy persons ANC is usually between 1500-2000. Let’s say you get sick though and are fighting an infection, then your ANC would climb higher.

Ezra’s ANC has at 4,000 at one point when he was fighting off his port infection. However, a really high ANC can also be a sign of relapse.

This number will dictate our lives. Right now Ezra’s blood is tested weekly. Last week his ANC was 1600, a very good number. With a number that good, I feel comfortable taking him out to places like the grocery store, outdoor parks, etc. 

During Induction (the 1st phase of Ezra’s treatment) his ANC dropped to 300. It was during that time that he caught that blood infection. There was just nothing there to help him fight it off.

An ANC below 500 is called neutropenia. During neutropenia Ezra’s system is greatly compromised, there is little to no infection fighting cells present.   If he does have to leave the house, he has to wear a mask. The only reason he would go out during those times would be for a Dr.s appt.

I fully expect Ezra to be neutropenic again, I am just enjoying the time that he isn’t! Just another look into what our lives have become.

Wednesday, July 15, 2009

Silly baby


Chemo has made Ezra crazy! Its just great to see that it isn’t slowing him down. Sorry the video is sideways…I was holding the camera the wrong way, and I have no idea how to fix that….just tilt your head :) But in the future I will hold it the right way!

Thursday, July 9, 2009

Lumbar Punctures

Tomorrow we are going in early for Ezra to have a lumbar puncture (aka a spinal tap). Usually when doctors perform LP’s they are only going in to collect a cerebrospinal fluid (CSF) sample. With Ezra they not only collect a sample but also inject chemo in the form of Intrathecal Methotrexate. It is given to prevent leukemia cells from entering into the brain and spine. At Ezra’s diagnosis he did not yet have any leukemia cells in his brain or spine…a very good thing.

800px-Spinal_needles This is what the needles look like that go in to Ezra’s spine…scary, I know. The needle is inserted between the lumbar vertebrae L3/L4 or L4/L5 and pushed in until there is a "give" that indicates the needle is past the dura mater. Like this.


Ezra has had at least 4-5 of these done already, and he will have many more to come. We go in and they give him a drug called Versed which makes him all silly. Then they wheel him away and he is put under for the procedure because of his age, for adults you just get a local anesthetic.

They come and get me after he is out, and still has not yet woken from the anesthesia. He wakes up pissed off, hungry , and thirsty (not allowed to eat or drink before hand). So I come armed with snacks, and juice. Once they are sure he is awake and well, we are sent on our happy way.

It doesn’t get any easier seeing your child lying there unconscious and  helpless….

All in the day of a kid with Cancer.

Monday, July 6, 2009


We have really been enjoying our time at home. Especially Ezra and Rowan. Its interesting to watch how the relationship between the two of them has changed.  Children are so much wiser than we give them credit for.


Rowan has taken up caring for Ezra, he will bring him snacks, and juice, and help hold his medicine ball when Ezra walks around. They really love each other.


Ezra has been so busy playing. The stiffness in his legs has gone away and he is getting around great, there is still a little limp, but it is drastically better. Him and his brother spend hours playing , its so great to see. They both needed a detox from all the TV they  watched over the last month.

As for the medical aspect to it all, he is still taking a ton of drugs. We are now in the phase of his treatment that they call “Consolidation”. We have to give him antibiotics 4 times a day, 3 of which are on 8 hour intervals. These are the little medicine balls we hook Ezra’s PICC line up to. We will be giving him those until they think his wound has healed up enough.

DSC_0002 On top of the antibiotics he receives oral medication as well. He gets oral chemo (6MP) every day, different dose depending on the day, he gets Septra (another antibiotic) on Friday, Saturday, and Sunday. He also takes an antifungal daily to prevent yeast from growing, from the antibiotics , I think. He really hates taking all of these oral meds, but we get them in there.

My husband is also changing the dressing on Ezra’s wound (from his incision) every day, from where they removed the port. That is probably the worst part of Ezra’s day. It is really gross looking, since the infection was inside of him, they want the wound to heal from the inside, out. So they basically left it open. Its about the size of a quarter, which Anthony has to put packing tape in to every day. As soon as it heals shut I think he will get another port put back in.


He is losing more of his hair and his chubbiness daily, he doesn’t seem to care though.

mrstrong This picture was taken just a few days after the one above, and you can see his face slimmed down some from then, and more hair fell out.

I can’t even put into words how great it is to be out of the hospital, and back to a semi-normal routine and life. Its almost easy to forget about the cancerous elephant standing in the room.

You can read about our 4th of July here.

Tuesday, June 23, 2009

Free at last, Free at last

Little man is free at  last. We finally got to take Ezra home today, after a 19 day stay in the hospital.  It was so exciting, it was almost as exciting as taking him home as a newborn.

ezrahome3 He is so happy to be home, look at how calm his eyes look.

Home Care came over today to teach me how to administer his antibiotics through his PICC line. We will be doing that for possibly 2 weeks, or however long it takes Ezra’s incision to heal. He gets antibiotics 4 times a day.


Rowan really missed Ezra he was so sweet to him. He told me Ezra is all better. He wanted to sit close to Ezra, and even wanted to play with him.


More smiles, we got lots of smiles and giggles today. It is such a relief to have him home.

Rowan missed Ezra so much he even shared his Batman toys…….now that is love.


Saturday, June 20, 2009

The Best News

No were not going home from the hospital.

Even though we are still stuck up at the hospital, we got the best news today.

Ezra’s cancer is in remission….deep remission! That is what Ezra’s Dr. called it, I guess there are different levels of remission, deep remission is excellent!

So Ezra has the cancer’s butt kicked, now if he could only kick this infection. Sounds like Monday or Tuesday now that we will get to go home. We will still have to give him antibiotics at home , and pack his incision wound, which is no easy feat.

We don’t care, we will do whatever it takes just to take him home.

He has been off the steroids now since Thursday. I got a handful of smiles today, and even some conversation. It was more than I have gotten in 28 days! Its nice to see glimmers of the former Ezra in there, I was worried I would never see him again.

For now we are trying not to dwell on the fact that we are still in the hospital, and have moron nurses.

We are reveling in glee over the remission news instead.

Thursday, June 18, 2009


Well we won’t be going home tomorrow. Ezra’s white blood cell count is really high right now. Which you would think would be great news….not so much.

A few things can be causing his high white blood cells, it can be from the steroids, or the viral cold he seems to have caught, or it could mean he is still fighting this infection.

Since today marked the last day of induction and steroids (hooray!) they are going to wait and see if his WBC’s go down. They are also going to keep giving him antibiotics as a precaution. So it looks like we will be staying at least till Monday, so they can closely monitor him.

In good news, Ezra had a bone marrow aspiration, and spinal tap (with chemo) today. The oncologist said he took a look at the bone marrow and did not see any cancer cells, he suspects Ezra is in remission, we will get official news in a few days.

I am completely spent, physically, emotionally, and mentally. Hearing that we were going to be in the hospital even longer was really upsetting. This will put us at about a months time in the hospital. Every aspect of all our lives is suffering. I just want my sweet baby to come home.

Sunday, June 14, 2009

Port infection

On Friday Ezra had his port, that was just put in place removed. The area around his port continued to look red after many rounds of antibiotics. They are usually able to flush enough antibiotics into a port to knock out the infection…not the case with Ezra.

So they removed it, and the results from the labs on it came back today. The infection that was living in the port was also the pseudomonas (the same infection that was in his blood). That is kind of good news, because it means it wasn’t an additional infection, and chances are when he gets a new port put in he won’t have the same problem. His Dr. said he should not get this infection again…not sure how he knows that?

Here is a picture of what a port looks like.

portThey do a surgery to implant it under the skin and hook it up to vein, just like this.

Port A CathSince Ezra had to have his removed he is using a PICC until he is cleared safe to get another port implanted. Here is what a PICC looks like.

piccDid I mention they don’t put your child under for a PICC placement? Looks like a lot of fun to me!

And that wraps up your public health message! 

Saturday, June 13, 2009

Ezra Pictures

I finally remembered to bring my camera up to the hospital today. I know many of you have requested pictures so that you can visually see how he is doing.

Ezra finally agreed to wearing a mask, which has greatly improved our hospital stay. If he wears a mask he can venture out of his room, and even out of the hospital on rides.


He still has all of that beautiful hair, guess he is holding out. Dr.s told me they typically start losing their hair around 7-10 days into chemo, he is on day 22.


Here is Rowan pushing his little brother around the hospital. Ezra calls his rides “Weeeeee!”. He will ask to go weeeee and put a mask up to his face…it will break your heart, he is so sweet.


For part of Ezra’s chemotherapy he has to take steroids for 28 days. The steroids make people bloat up, so he is sporting a moon face and a Buddha belly for the time being. They also make him an irritable, fussy, ravenous beast.  He screams “IZZA!!!” at us at all hours of the day. Pizza is his food of choice right now. He has taken to screaming IZZA at the staff as well, as if they can magically make a pizza appear.

Ezra has been such a great boy through all of this, he takes it for what it is.  Since getting his port removed he has even been playing a little, which is so good to see.

We hope to be leaving the hospital next week , probably not till the weekend though…possibly later. Honestly, I don’t mind having him here, at least I know he is safe.



I have seen these done many of times, I always wanted to make one. To make yours go here.

Friday, June 12, 2009


Welcome to the official Ezra blog, I plan to use this blog for medical updates for families and friends, and most importantly for Ezra to have to look back on someday. Thanks so much Leslie for designing this blog, its beautiful, someday Ezra is really going to appreciate it.

As most of you know we are back in the hospital. We have been here a week now, and are not leaving anytime soon. You can read what landed us back at the hospital here.

Ezra had a blood infection called Pseudomonas. He is receiving 14 days of antibiotics to wipe it out. It is a common infection that kids with ALL get, but is deadly if not treated immediately.

Today he had to have a surgery to remove his port. It had become infected. They can’t say if the other infection caused it or if it is another infection by itself. The Dr. said it was surrounded by a sea of puss….lovely.

So last night they put a PICC in place so they can administer his chemo and antibiotics through that.

Then in a few weeks he will receive another port , as long as his counts are still up.  Hopefully this one will not become infected.

I was told today we are looking at least another week of hospital time. This is so hard on all of us.

I miss my husband, I miss Rowan, I miss my bed, and I miss my sanity.

Sunday, June 7, 2009


Others who need your prayers



What is Acute Lymphoblastic Leukemia (ALL) ?

“The term leukemia refers to cancers of the white blood cells, which are also referred to as leukocytes or WBCs. When a child has leukemia, large numbers of abnormal white blood cells are produced in the bone marrow. These abnormal white cells crowd the bone marrow and flood the bloodstream, but they cannot perform their proper role of protecting the body against disease because they are defective.

As leukemia progresses, the cancer interferes with the body's production of other types of blood cells, including red blood cells and platelets. This results in anemia (low numbers of red cells) and bleeding problems, in addition to the increased risk of infection caused by white cell abnormalities.

As a group, leukemias account for about 25% of all childhood cancers and affect about 2,200 American young people each year. Luckily, the chances for a cure are very good with leukemia. With treatment, most children with leukemia are free of the disease without it coming back.

Approximately 60% of children with leukemia have ALL, and about 38% have AML. Although slow-growing chronic myelogenous leukemia (CML) may also be seen in children, it is very rare, accounting for fewer than 50 cases of childhood leukemia each year in the United States.”


“The ALL form of the disease most commonly occurs in younger children ages 2 to 8, with a peak incidence at age 4. But it can affect all age groups.

Children have a 20% to 25% chance of developing ALL or AML if they have an identical twin who was diagnosed with the illness before age 6. In general, nonidentical twins and other siblings of children with leukemia have two to four times the average risk of developing this illness.

Children who have inherited certain genetic problems - such as Li-Fraumeni syndrome, Down syndrome, Kleinfelter syndrome, neurofibromatosis, ataxia telangectasia, or Fanconi's anemia - have a higher risk of developing leukemia, as do children who are receiving medical drugs to suppress their immune systems after organ transplants.

Children who have received prior radiation or chemotherapy for other types of cancer also have a higher risk for leukemia, usually within the first 8 years after treatment.

In most cases, neither parents nor children have control over the factors that trigger leukemia, although current studies are investigating the possibility that some environmental factors may predispose a child to develop the disease. Most leukemias arise from noninherited mutations (changes) in the genes of growing blood cells. Because these errors occur randomly and unpredictably, there is currently no effective way to prevent most types of leukemia.”

What Are the Symptoms of ALL?

“Because infection-fighting white blood cells are defective in children with leukemia, these children may experience increased episodes of fevers and infections.

They may also become anemic because leukemia affects the bone marrow's production of oxygen-carrying red blood cells. This makes them appear pale, and they may become abnormally tired and short of breath while playing.

Children with leukemia may also bruise and bleed very easily, experience frequent nosebleeds, or bleed for an unusually long time after even a minor cut because leukemia destroys the bone marrow's ability to produce clot-forming platelets.

Other symptoms of leukemia may include:

  • pain in the bones or joints, sometimes causing a limp
  • swollen lymph nodes (sometimes called swollen glands) in the neck, groin, or elsewhere
  • an abnormally tired feeling
  • poor appetite

In about 12% of children with AML and 6% of children with ALL, spread of leukemia to the brain causes headaches, seizures, balance problems, or abnormal vision. If ALL spreads to the lymph nodes inside the chest, the enlarged gland can crowd the trachea (windpipe) and important blood vessels, leading to breathing problems and interference with blood flow to and from the heart.”


“Certain features of a child's leukemia, such as age and initial white blood cell count, are used in determining the intensity of treatment needed to achieve the best chance for cure. Although all children with ALL are treated with chemotherapy, the dosages and drug combinations may differ.

To decrease the chance that leukemia will invade the child's central nervous system, patients receive intrathecal chemotherapy, the administration of cancer-killing drugs into the cerebrospinal fluid around the brain and spinal cord. Radiation treatments, which use high-energy rays to shrink tumors and keep cancer cells from growing, may be used in addition to intrathecal chemotherapy for certain high-risk patients. Children then require continued close monitoring by a pediatric oncologist, a specialist in childhood cancer.

After treatment begins, the goal is remission of the leukemia (when there is no longer evidence of cancer cells in the body). Once remission has occurred, maintenance chemotherapy is usually used to keep the child in remission. Maintenance chemotherapy is given in cycles over a period of 2 to 3 years to keep the cancer from reoccurring. Leukemia will almost always relapse (reoccur) if this additional chemotherapy isn't given. Sometimes the cancer will return in spite of maintenance chemotherapy, and other forms of chemotherapy will then be necessary.

Sometimes a bone marrow transplant may be necessary in addition to - or instead of - chemotherapy, depending on the type of leukemia a child has. During a bone marrow transplant, healthy bone marrow is introduced into a child's body.

Intensive leukemia chemotherapy have certain side effects, including hair loss, nausea and vomiting in the short term, and potential health problems down the line. As your child is treated for leukemia, your child's cancer treatment team will monitor the child closely for those side effects.

But with the proper treatment, the outlook for kids who are diagnosed with leukemia is quite good. Some forms of childhood leukemia have a remission rate of up to 90%; all children then require regular maintenance chemotherapy and other treatment to continue to be cancer-free. Overall cure rates differ depending on the specific features of a child's disease. Most childhood leukemias have very high remission rates. And the majority of children can be cured - meaning that they are in permanent remission - of the disease.”

Information from Kids Health



Please help support our family in our time of need. All money is put into a trust fund under Ezra’s name , and is used to help us with all of the extra costs, and money loss we are incurring during this stressful time in our lives.

Thanks, so much.


Other Great Causes To Give To

- Make a Wish Foundation

- National Children’s Leukemia Foundation

- St. Jude Children’s Research Hospital

- Spirit Jump
Spirit Jump


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Manic Mother

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