Sunday, August 27, 2006

A Look Back

Before I started this web log I used email to let my family and friends know about Parker's illness in Centenary and Sick Kid's. I decided to go back into my email to find the messages I had written to friends and family about Parker. Below are the messages I wrote to these people. It chronicles the time leading up to the day Parker entered his reverse isolation room on 8B.

February 11th - Message to my Friend Michael
Hey Mike,

Sorry I have not written in a while.

Parker has been in the hospital for the last 10 days. He has pneumonia. Not exactly what I thought it was going to be like. He is definitely a trooper though. A very good patient.

Hope things are going well with you,

Kevin

February 12th - Message to my Friend Michael
Well, it started with Brochiolitis and I guess with his immune system down he got pneumonia.

He is going to be fine. We just did not think that in the first month we would have spent more time at the hospital with him than at home.

He is eating and gaining weight. After talking with the doctor, we think it is a viral infection that caused both. The only real symptom he has of both is his breathing is in the mid to high 70s/ per minute when it should be in the 40s. He has to work harder to get his oxygen (more breaths per minute).

Tracy and I pretty much alternate nights at the hospital. Last night was my night.

Honestly, he has an amazing bedside manner. He is being such a trooper and not complaining at all. If you saw him, you would never know he was sick. We just want him to get better.

Kevin

February 21st - Message to my Friend Michael
Hi Mike,

The baby is quite sick. We are Sick kids. They are doing a lot of tests right now. The baby is not fighting the pneumonia and his immune system is not working correctly. There are a team of doctors trying their best to find out what is wrong. It is quite a stressful time right now. They are looking for his thymus gland. They don't see it in any of his x-rays. His lymphatic cells are EXTREMELY LOW and they don't know why.

I have to get back to the room. They have email at the hospital.

Kevin

February 24th - Message to my Friend Michael
Hey, I though I had updated you on this one. But looking back, I did not. They found his thymus gland. It was very small but it was there. His lymphocytes were still low a couple of days ago but they were increasing. They are now looking to see if he has the right proportion of the different kinds of lymphotcyes as well as if they can fight infections properly.

Kevin

February 24th - Message to my Friend Michael
Parker is looking better. We are waiting for some tests to come back. They may come back today, they may come back Monday.

He is getting stronger. The nurses always say how strong he is for his age. It will be nice when we can go home. I am pretty sure he will be a very spoiled little boy for a while.

Say hello to your mother for me. Let her know that we are all doing well.

February 28th - Message to my Friend Michael
Hi Mike,

We have not found anything out yet. Tomorrow we should get some more results about his immune system. He may be going in for a CT scan as well to look for a lung disease. I wish he would just get better.

Kevin

March 3rd - Message to my Friends and Family
Hey Everyone,

I am sending out this email to let people know the latest about little Parker.

Parker seems to be very difficult for them here at Sick Kids. They are having a very difficult time trying to diagnose him with something.

He did have a CT Scan yesterday: They thought they saw something called tracheoesopegeal fiscula which is a connection between his air pipe and food pipe. So they did a Upper GI to see if they could see food going into his lungs, but that seemed to come back negative.

The rest of his lungs look abnormal and the Respitory Team are to review the rest of the CT Scan to see if they can come up with something.

His lymphocytes are extremely low. They consist of cells called T and B lymphocytes. The lymphocytes are made in the Bone marrow and then either go to the Thymus to become T-cells or do not to become B-Cells. Since both are low they are looking at some different Primary Immunodeficiencies as well. He is currently being tested for something called ADA which cause both T and B cells to be low and are caused by an enzyme deficiency. It is cured with a bone marrow transplant. But again, this is just one thing it could be. However, the only way for him to have that is for Tracy and I to both be carriers of the gene since it is autosome recessive.

We are all just hoping that it is just some virus that causes the lymphocytes to lower while causing some abnormalities in the lung and he will eventually heal by himself. They cannot test for every virus because there are just so many. They did however test him for the main ones. What I do not understand is that virus are fought by T-cells and would cause T-cells to elevate in numbers so they can fight and he does not have elevated T-Cells.

All the different teams are meeting today at 2pm to discuss Parker. They will then see us after that. So it is a waiting game at the moment.

The thing is ... If you look at Parker he looks fine. He is very alert. He eats, and gains weight (slowly). This is what boggles their minds as well.


The important things in life become so much clearer once you have a child. Parker and I made a movie yesterday with his stuffed animals. I think they wanted to cheer him up.

Kevin

March 3rd - Message to Friends and Family
Okay,

We met with the team at 2:30pm and we did get some more information. Well, information in the sense of what direction they are moving.

Parker is still a special case in the sense that they do not know what the diagnosis is. There is definitely something incorrect about his lungs, what it is, they are still unsure. It is however, one of two things, some infectious disease (an infection) or some underlying lung disease.

The next major step is to know if it is an infection or not. If it is, then there is probably an immunodeficiency. The number one on their list although he does not appear to look like a child that has it is ADA. So we are still waiting for the test to let us know if he has that. But they would rather not wait to hear if he has that particular immunodeficiency to know if there is an infection.

So, the way to know if there is an infection is to first get the infectious disease team on Parker team. They will be meeting with us in the next 24 hours to see if they feel there is more than a 50% chance of an infectious disease.

If they believe it is most likely one then they will perform what is called Brochoscopy or Brochoalveolar lavage. This procedure will require Parker to be placed under a general ansthea. They will then enter in air ways, into his lungs to grab some cells. This will let them look for some infectious disease. We are of course anxious of sedating Parker in any way but do understand that it may have to be done if he is going to get better.

Now, if they think it is a lung disease not caused by infection, then they will have to do a lung biopsy. Which would require surgery to open his chest and lung to obtain tissue. You can imagine the stress we are experiencing as we imagine our new born having to have surgery, as there are complications involved in having this done. Note that a small child like Parker may not even yield enough tissue in a biopsy.

Tracy, Parker and I appreciate all of your prayers.


March 7th - Message to Friends and Family
Hello,

Today was quite a difficult day for us as we found out some information that we were not expecting. I had mentioned in an earlier email that Parker was being tested for an immunodeficency called ADA. The test came back this morning positive. So it appears that Parker does have this specific immunodeficency. ADA is an enzyme that everyone has and it works with the T and B-cells (a subset of white blood cells) whose main purpose is to fight infections. Having an ADA deficiency means that Parker is unable to fight even the simplest of things like the common cold ("Bubble Boy Disease").

After speaking with the Immune Team at Sick Kids, the next step is to retest Parker, as well as have Tracy and I tested to see if we carry they recessive gene. Although it is highly unlikely that a false positive would appear, it is protocol to redo the test to be absolutely sure. Once the test confirms that Parker has an ADA deficiency, he will be moved to a wing in the Hospital where all of the kids are awaiting or have had a Bone Marrow Transplant. That brings us to the treatment of ADA deficiency. Yes, there is one.

In 85% of the cases in which a child has ADA the treatment is a Bone Marrow Transplant. They will first check Tracy and I to see if we are likely matches, but more often then not we will have to resort to the Bone Marrow Transplant Database. If and when they do find a match (3-4 months usually from the database) Parker will undergo the Transplant. The average time in the hospital would be 10 months for recovery. If Tracy and I are a match then you are looking at about 7 months for recovery in the hospital. The difficult thing here is that while he is in this wing of the Hospital Tracy and I will no longer be able to stay with Parker through the night. Something that Tracy and I are both having difficulties coming to grips with. It is very important that the likelihood of a match is high since we do not want Parker to reject the transplant or the host marrow to attack Parker's organs.

If that were not enough, we met with the Surgical Team this evening to talk about Parker's biopsy. Because Parker has ADA he cannot fight infections and that is what is most likely the cause of his rapid breathing and constant need of oxygen. Since the Infectious Disease Team has not been able to pinpoint the infection that Parker has, a Biopsy will be done to take some tissue from his lung and test it for many different infections (viruses). The type of biopsy being planned is called a Tracheoscopy Biopsy. With this biopsy, they make two small incisions in his side. One for a camera and one for a device that will remove the tissue. Once they have the tissue, pathology can use it to run tests (24 hours - 2 weeks depending on the tests) to obtain the infection causing the problem. Once they know what it is, they can fight it for him. This will most likely occur by Friday of this week.

After he has the Biopsy he will spend a day or two in the Intensive Care Unit where he will be monitored. This is typical of infants that have oxygen dependencies. From there, he will be moved to the Bone Marrow Transplant Wing of the Hospital where he will reside until he goes home after he heals from the transplant.

Tracy and I do appreciate everyone's prayers and thoughts. And although Parker has not directly come out and said it, he does to.

Kevin

March 8th - Message to Friends and Family
Hello,

It was confirmed today that Parker has ADA. He will be going for his surgery tomorrow for the Biopsy and the BAL to find out what infections he is fighting. Once they know, they will fight them for him. Parker will begin isolation on the 8th floor (B) where there are two types of patients. Cancer patients and immunodeficient patients. The immunodeficient patients are kept in COMPLETE isolation until their treatment has completed.

It is definitely going to be a long and tough ride but we know that we will make it.

For those of you that want to get more information about ADA check out this site:
http://www.marrow.org/PATIENT/immune_sys_disorders.html

Information about bone marrow transplants are located here:
http://www.marrow.org/PATIENT/patient_faqs.html#findmatching

March 9th - Message to my Friend Adriana
Thank you for the kind words. It is so crazy and I honestly don't know if it has really hit me yet what has happened. I have realized in the last couple weeks what great friends Tracy and I have. I know that things are going to be tough the next while but I know this kid is a fighter like his old man.

Parker had his surgery today and it went very well. Although it does not change his ADA it was a happy thing to hear that surgery went well. I did see him in the recovery room afterwards and when I told him I was there and called him my little monkey, he opened his eyes to look at me. You can't imagine the joy that brought me.

Maybe over the March Break you can visit me at the hospital. Maybe we can go for lunch so that I have a shoulder to cry on if need be. Although I am strong most of the time, there are times in which I am unable to hold it in. Tracy is so good for letting me do that when need be.

I will give you my number at the hospital once we move in to 8B in the next couple of days.

Kevin

March 10th - Message to my friend Naila
Surgery went well. They did the Biopsy, BAL and Broncoscopy. Today, his blood pressure was low, breathing and heart rate high, and he looks quite swollen. He has so many things hooked up to him, so it is hard to handle. He is awake, but he is obviously not himself today.

I know he will get through this part. He is on three different antibiotics, as well as an IV for a specific kind of immunoglobulins (gamma). They are, as I write doing a blood transfusion on Parker.

I am sooooo tired. And full now as we went to eat at the Saffron Tree for a lunch buffet.

As soon as I get access to my computer I will send you a bunch of pictures.

We are supposed to be going to 8B on Monday, as long as the room is still available.

I will call you later.

1 comment:

Natalie said...

Hi There Parker Pants,

It is moving to take a look back on your journey little man. What a road you have travelled. Each step of the way you have been in my prayers Parker and I hope that you, your Daddy, and your Mommy know how much I love you all.

Lots and lots of Love,
Auntie Natalie & Uncle David xoxo