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.http://www.wordle.net/

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


You can email me manicmotherme@gmail.com

You can find my other blog here:

Manic Mother

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Ezra's Story



May 22nd, 2009 will forever be marked the day the world fell out from underneath us. That is the day that I heard cancer and baby used in the same sentence.

Let me back up though first for a moment. I am sure you are asking yourself how we found ourselves where we are.

Over the weekend Ezra had got bit by a spider and had a handful of bites on him, we were concerned they were venomous spider bites. He was also limping in the leg that the bites were. We took him in to see the Dr.s and they basically said just to monitor him. They ordered an x-ray for a precaution because of the limp.

Its those x-ray results that changed everything.

The radiologist noticed abnormal markings in his bones, which can  be indicative of leukemia. They of course said it was just a precaution but we needed to see an oncology Dr. to follow up.

The oncology Dr. looked him over and did not see any of the typical tell tale signs of Leukemia.  He told us not to worry and had Ezra’s blood drawn to rule Leukemia out.

Later that night we got a phone call and were told some of the lab results looked abnormal, and were told to bring him into ER. They did more labs there, and it was by far the worst night of my life ever.

Results came in, and although they were still waiting on one more result to officially diagnose Ezra, they told us then that they thought he had Leukemia.

We sat there in our curtain enclosed area in the ER weeping, holding our sweet little boy. So many questions swirling in our heads. Why him? Am I to blame? Could it have been prevented? Is he going to die? What next?

The next morning an oncology Dr. came in and gave us the official news and told us Ezra had Acute Lymphoblastic Leukemia (ALL). Some of his first words to us were “ He is going to be fine, he is going to go on to graduate college, be a father, and a grandfather.” In my darker hours, I find myself revisiting those words often. I cherish those words. I need those words. Those words keep me afloat, they give me hope, peace, and reason.

It still doesn’t make any sense to me, how did my perfectly healthy baby go from a limp to Leukemia? Ezra did not present any of the typical symptoms of Leukemia, besides being pale. But if you have seen me or my other son, the paleness is no cause for alarm.

The reason Ezra was not yet exhibiting symptoms of ALL was because it was still really early. Typically when kids are diagnosed with ALL they have any where from 60-90% cancer cells (or blasts as they call them) present . The disease does not usually present itself till 25% blasts are found. Ezra’s were at 15% at diagnosis.

We caught his cancer on a complete fluke, and we caught it really early.

Sometimes fate has a beautiful way of interceding, thank you Mr. Spider.

So Ezra spent his 2nd birthday in the hospital receiving chemo.


His bone marrow was tested a week into the chemo to see how he was responding. They only found 1-2%  cancer blasts  left. This labels Ezra as a rapid early responder, which is highly favorable. He will be tested again at day 28, were they expect to find his cancer has gone into remission.

Ezra will receive three years of chemotherapy treatment. Most children recover completely from this cancer, and go on to live a normal cancer free life.

Prior to Ezra’s diagnosis my husband and I always talked about how there was something special to Ezra. There is a light in Ezra , that not every child encompasses. His light is infectious and can put a person at ease, make them laugh, or make them cry. He is a sweet old soul, who is knowledgeable beyond his years. He is a fighter.

He will make it through all of this just fine. He has been braver than I can ever imagine myself being.

He is my hero.