Remission!

Dr. Connelly called with fantastic news tonight. Izzy's cancer is in remission (the goal of these first 4 weeks of chemo), meaning that less than 5% of her bone marrow cells are cancerous (actually 3%) compared to 85% when she was first diagnosed. All of us including her doctors are very excited. This also means that they won't have to intensify her treatments--we will be able to stick with the original plan. Thank you all for the awesome support.

Izzy's celebration consisted of some nausea that ended in her paying homage through the mouth to the porcelain throne. We are thankful that she won't need more intense treatments as the side effects of her current treatments are becoming worse.

3rd Dose of Chemo

Izzy, Lorin and Kerri were at the hospital all day today for Izzy's 3rd dose of chemotherapy with accompanying blood draw, doctor visit and bone biopsy. Kerri wanted to take Lorin this time so that Lorin could get an idea of what goes on with Izzy's treatment. Below are some pictures of the medical staff prepping for and taking the bone biopsy (inserting a needle about the size of a McDonald's milkshake straw into the backside of her hips). She is conscious when they take the biopsy, but she is all hopped up on sedatives and doesn't remember the procedure.



On these days, Izzy comes home ready to just veg as you can imagine. Most of the side effects we are seeing now are from the steroids and are relatively mild namely: mood swings and wolfish appetite. Izzy is quickly gaining weight in her face, which is such an interesting juxtaposition to the rail thin Izzy before cancer.

Warm Weather and Lots of Food

Except for the occasional steroid induced mood-swing, Izzy was a very happy girl today. We all took advantage of the warmer weather that never seemed like it was going to come and spent some fun times outside.


Another side effect of Izzy's treatment is a barbarous hunger. She asks for food all day long. Kerri and I both are amazed at how it all fits in such a tiny body. Along with the food requests come a lot of requests for Mom. I have tried to buffer some of these requests by asking Izzy what she needs when she asks for Mom. Today she responded by saying, "Geez Louis, Dad. I said Mom. Why do you keep answering when I ask for Mom? It's not fair." I guess it's not. :) Below she is enjoying one of the the many snacks of the day--baked potato with salad dressing.

Great Results and a Good Book

Dr. Connelly called on Saturday with some preliminary results from the bone biopsies on Thursday. The cancerous cell percentage in her bone marrow before beginning chemotherapy was 85%. After this second dose of chemo, the doctors hoped the percentage of cancerous cells would be 25% or less, and it is--20%. Great news! They hope that by the 19th of April the percentage will be 5% or less, an indication that the cancer could be on its way to remission.

Kerri got a reference to a great book about childhood leukemia called "Childhood Leukemia A Guide for Families, Friends and Caregivers" by Nancy Keene. The book has a lot of great information that is helping us understand what is going on now and what will go on in the future. It could be a great resource for any of you wanting more information than we are providing here.

We want to express our gratitude for all of the amazing support, but worry that typed words may cheapen the deep-seeded appreciation. In spite of that, thank you all so much for the thoughts, prayers, hopes and other support. It has been awe-inspiring that we could be surrounded by so many excellent people.

I got my first experience with wearing a mask around the house as my Strep Throat came back this week.

2nd Round of Chemo and Ensuing Battle Plan

Izzy's visit to the cancer clinic was a rough one today. They drew her blood, gave her a spinal tap, took bone biopsies and administered her chemo. They take the bone biopsies from her hips where her bum and lower back meet. To do the bone biopsies and spinal tap they dope her up so she is loopy and then a nurse proceeds to bend Izzy in to a ball and hold her there for a few minutes while they stick large needles in to her back. It was hard on Kerri and Izzy. However, they did find some comfort in a great play room that the cancer clinic has for the children.

Thank you all for the comments on the blog and other messages of support. We read them daily and really appreciate them.

Below is a calendar of Izzy's treatment plan for the next 5 weeks. They refer to these first 4 weeks as the induction period in which they are attempting to induce the cancer in to remission. They classify remission in Izzy's case as 5% or less cancerous cells in her bone marrow--hence the need for the bone biopsies which measure this percentage. She started at 85%.

The Thursdays in light red will be the tough days filled with chemo, spinal taps and bone biopsies. The Tuesdays will be relatively simple with just blood draws scheduled.


The consolidation period begins after the induction period. The consolidation period is a series of tests and chemo to make sure that her central nervous system is not affected by the cancer.

After the initial induction period and depending on how effective the chemo is against the cancer, Izzy's doctors will adjust the intensity of her treatment plan.

One change to our lifestyle is Izzy's twice a day doses of six medications. Below Lorin and she are getting psyched for the night's dosings.

Izzy's Video

Hoping that pictures are worth a thousand words and more, we put together this video of Izzy's life to date and our hope for the future. You can see it on YouTube by clicking here or the direct link is below.

http://www.youtube.com/watch?v=bF3Fc0mNKcQ

Izzy goes in to the out-patient cancer clinic tomorrow for her second dose of chemo and a bone biopsy to monitor the cancer in her bone marrow. We'll be sure to let you know the results of the day.

Today she had a great time at the park playing with Lorin, Ryan and friends. During these times it still seems so surreal that she is sick.

1st Out-patient Hospital Visit

We had a scheduled blood draw today at the cancer clinic. Izzy was not excited to be back at the hospital. They were able to use her port (or bubble as Izzy is calling it) to draw the blood as opposed to digging around in her arm. She still doesn't realize the difference, but hopefully will soon.


We think the results of the labs are great (we'll get her Doctor's opinion on Thursday). Her percentage of cancerous cells in her blood not her marrow, the source of her cancer, has dropped from 78% before chemo to 2% today. The general measure of her immune system is getting better too currently at 1.3 with 2.2 being a low-normal value. Kerri is making fun of me because I have all of these values over the last week in a spreadsheet so that we can graph and track them. Maybe business school is rubbing off on me.

We noticed another side effect the last couple of days--increased hunger from the steroids. :) Izzy lost quite a bit of weight in the hospital but is gettin 'er done at the dinner table now.

Izzy's Home!

We got Izzy home at 1:42 pm Eastern time today. We are so happy to have her back. You can see that she is happy to be back too.

We checked out of the hospital with minimal fuss and a backpack size bag of prescriptions. Most of them are to handle the side effects. She will be going to the cancer clinic twice a week for the foreseeable future to either have her blood drawn, see a doctor or get her chemo.

We have to be very careful to monitor her temperature. If it goes above 100.5 degrees Fahrenheit we'll need to take her to the hospital to make sure that it is not an infection. Her immune system will have its highs and lows over the course of the chemo with the lows being often and deep.

To help protect her during the lows I took the liberty of purchasing roughly a crate of Purell hand sanitizer and scattering the dispensers around the house. All of the nurses and doctors said that proper hand sanitizing for everyone at home would be key to avoiding infection.

Visits to public places will also be out, especially when her counts are low. Unfortunately, Chuck E. Cheese is going to have to wait a while.

St. Patrick's Day

Izzy enjoyed a great St. Patrick's Day party at the children's hospital.


Here she is attacking a leprechaun lawn gnome with a green hula-hoop.
Her labs (results of tests run on her blood every 6 hours) came back really positive again. The chemo has been very effective at lowering the affected cell counts. However, this also lowers some of her good cell counts like the red blood cells that carry oxygen to the body. If you look closely at the first picture, you can see that her line is red, and that is because they had to give her a blood transfusion today (common in children receiving chemo).

She will also likely need a platelet transfusion tomorrow before leaving the hospital. Platelets are the cells in your blood that clot when you are cut. This has been the cause of one of the first side effects we have seen in her which is called Petikia. They are little red spots that appear on her body like freckles that are essentially small bruises because her blood isn't clotting. Again this is a normal side effect for a child on chemotherapy.

Izzy, Lorin and I had a fun time after the St. Patty's party running down one of the halls from the magic doors (doors that automatically open when you get close). Izzy said, "They must have scary ghosts in them." After which she and Lorin pretended to be T-rexes and proceeded to scare the ghosts out of the doors.

1st Dose of Chemo

Izzy had her first dose of chemo last night. It was a rough one for both her and Kerri. Izzy's breathing was extremely shallow restricting the amount of oxygen that was getting to her body. They had to insert nose tubes in the night to pump oxygen in to her. This and other procedures kept them both up most of the night.

However, all of the positive thoughts and prayers directed Izzy's way made a huge difference. Today her labs came back with great results. Her white blood cell (where most of Izzy's cancer is) counts came way down (a great sign of the effectiveness of the chemo) from 38,000 to 13,000. Another sign of the effectiveness of the chemo is the reduction in the size of Izzy's neck by seemingly thousands of inches too. The extreme size of the lymphnodes in her neck were what first alerted us that there might be a problem before her diagnosis--think Jabba the Hut. Her Doctor said as much would happen when she started chemo.

On the side effects front, she had some nausea and vomiting last night that has subsided with medication. We haven't seen the other manifestations yet.

Dr. Connelly expects that we will be able to check out of the hospital and take Izzy home on Sunday evening.

In the afternoon, she got out and played dress up in one of the playrooms here.

T-Cell Leukemia (ALL) Diagnosed

Yesterday was the first day that I realized Izzy was sick. After a full day of tests and operations, she was swollen and flushed. Nothing has ever wrenched my heart-strings like seeing her suffer through that.

Today was much better. Izzy was more comfortable, and we got an official diagnosis and treatment plan. The full diagnosis is Pre-T-Cell Acute Lymphoblastic Leukemia. The "Pre-T-Cell" part is referring to the immune system cells that seem to be most affected. The Acute Lymphobalstic Leukemia is usually condensed in to the acronym ALL. The two main buckets of leukemia are ALL and AML. The treatment is less intense for ALL, and it is the most common type of cancer found in children. You can find more information on her type of cancer at the National Cancer Institute site here and/or at curesearch.org. Below is a picture with Izzy's oncologist Dr. Connelly. You can see that she is in good hands. :)

She starts chemotherapy tonight. Her treatment will last for 2 1/2 years. The first 6 months will be the most intense followed by two years of maintenance therapies. We were happy to be told by the doctors that most of the chemo she'll receive in the first 6 months will be outpatient--meaning that she won't have to be admitted to the hospital for them. However, during these 6 months she could be admitted for other reasons such as a fever (possible sign of infection) or for her protection.

Chemotherapy works by destroying cells that multiply and grow quickly. Unfortunately, this destruction of fast-growing cells is not targeted to just cancerous cells. Other cells usually affected are hair, bone marrow and intestinal. This is where most of the side effects come from such as the loss of hair, low red and white blood cell counts (fatigue and risk of infection) and mouth sores. We can expect that Izzy will begin experiencing degrees of these side effects in the next few days.

Izzy will be in the hospital for approximately 5 more days depending on how her body does with the chemotherapy. She has received lots of great support items in the hospital, especially visits from her sisters. And she is wicked excited about going to Chuck E. Cheese when she gets out of the hospital.

At the Hospital

At the hospital, Izzy has had some good times and ...

some not so good times.

Today was a long day for her. She underwent 7 procedures, 5 of which required her to be under general anesthesia. The Doctors are more confident in the T-cell Leukemia diagnosis, but will hold off until tomorrow mid-morning when all of the results are back to make it official. Also in that mid-morning meeting we will be discussing the treatment battle plan.

If you are interested, here are the 7 procedures in a bit more detail. The first two were an EKG and Echo-cardiogram to establish a base-line for her heart during treatment. She was then put under for the next 5 procedures. Two of them were a bone scan and a CT scan to see if the cancer had spread to other parts of her body. She was then transferred to the operating room where she had her central-line (more on this in the next sentence) put in, a bone marrow biopsy in which they extracted some marrow to analyze and a spinal tap to look for cancer in the spinal and brain fluid. The purpose of the central-line is to give the medical personnel a place to easily access blood and give treatments without having to poke her in the arm every time. They do this by working through a port which is a small plastic half-circle that is just beneath Izzy's skin in the middle of her chest. The port is connected beneath the skin to a tube that has been inserted in to one of her main veins.

On another note, we have received more great reviews about the U of M pediatric cancer center from respected persons in the children's cancer field confirming our decision that this is the right place.

Thank you for all of the prayers, thoughts and efforts. We know that so many people are anxious to help. One of our friends asked if she could set up a fund for Izzy. We said yes because we want people to be able to help in any way they want. You can find more information about the fund at the following website: http://www.izzysfund.org

Hopefully tomorrow we will have a definitive diagnosis and treatment plan to post.

Non-Hodgkin Diagnosis and Treatment Details

We met with Dr. Connelly again today--her oncologist on the team of doctors that are treating her. He has tentatively diagnosed Izzy with T-cell Leukemia. The switch to Leukemia from Lymphoma came today after some blood work and signs that much of her bone marrow could be involved in the cancer. Izzy will be going through roughly 7 tests over the next two days to confirm that diagnosis and determine the stage of the cancer. So at the 30,000 foot level, we are working to nail down her type of cancer in the next few days and then start treatment by the end of this week. Dr. Connelly again confirmed that her type of cancer is one of the more common types they treat and has cure rates in the 80th percentile. She was admitted to the hospital today to get her ready for tests during which she will be under general anesthesia.

We also got some general treatment information today. She will be receiving chemotherapy through a central line--a catheter in one of the large veins in her chest that they will be putting in tomorrow. The chemotherapy will involve both in-patient and out-patient treatments. For the in-patient treatments, she will be in the hospital 3 to 4 days after chemo to monitor how her body reacts and then released. The treatments will be through the central line and several spinal taps.

One of the short-term effects of the chemotherapy will be loss of hair. I'll be shaving my head in her honor once that starts, and we'll be sure to post bald picks as I'm sure you'll want to see my and Izzy's dashing looks with no hair. She may also suffer from some fatigue and nausea in the short-term. There are two possible long-term effects: a weakened heart and infertility. Dr. Connely says that modern treatments rarely cause the heart damage, but that there is still a good chance of infertility when she grows up.

One of the main things that we all wanted to know was where we should take her to be treated. Kerri and I both are feeling really good about the decision to have her treated here at the University of Michigan. We have heard great things about the Mott Children's Hospital here from current patients and knowledgeable outsiders. The Mott Children's Hospital is part of the Children's Oncology Group that is a national organization to which many of the best hospitals belong and participate in. This means that she will be receiving the same treatment as if she were at St. Jude's as it is a member of the COG. Another important reason for choosing Michigan is that during Izzy's treatment, she and we will need a great support network; and we feel that we have that and more here. We also feel that we don't want to totally upend her world by moving her to a hotel room somewhere to attend another hospital.

Please feel our love and gratitude for all of the support.

We have had a fantastic flood of support for Izzy and our family that we deeply appreciate; and to show that appreciation we want to keep everyone abreast of the latest news. Hopefully this will accomplish that. Thank you.

Izzy was diagnosed with lymphoma on March 9 of 2007. There are two main types of lymphoma--Hodgkin's and non-Hodgkin. We'll be meeting with the physicians this week to find out what type she has and what stage the cancer is in after more testing. The cure rates on both types of cancer are 80% or higher. The oncologist projected that she will need to be treated with chemotherapy for about 6 months. Of course this could change dramatically depending on the results of the tests to be run this week.

Right now she doesn't have any pain or discomfort except for the Doctors visits where she gets poked and prodded. At least three of the reasons that she'll make it through this are: 1. "That's cuz I'm Superman!" was her reply when thanked for watching Ryan; 2. She wants to grow up and be Sleeping Beauty; and 3. The day she was diagnosed we heard her singing Mom's favorite primary song: "I am like a start shining brightly, smiling for the whole world to see!...for I know Heavenly Father loves me."