The way it works for us

I've had at least 2 people saying that they would like to help by offering stem cells or donate bone marrow for Bianca. That is very nice, thoughtful and we really appreciate offers like these, and tonight I thought I'd write a little bit about Bianca's treatment plan and what is required for Bianca at the moment.

Bianca's treatment consists of chemotherapy. Initially it was quite intense and mostly done in hospital, of course that meant more side effects like low levels and so on which for us resulted in loads of infections and hospital stays and of course the constant isolation that came along with it. She also lost her hair - twice.

Right now she is still getting treatment, but she is on what they call maintenance therapy which for us means daily chemo tablets at home and once a month visiting the hospital for check-ups and hospital chemo treatment, an IVIG (which is a blood product transfusion) and the start of 5 days of steroids. Once every 3 months along with the normal check-up, the chemo that they would inject into her port, the IVIG, the steroids, Bianca would also go to theatre to get a lumbar puncture and chemo injected into her spine.

Along with all of this, Bianca also gets antibiotics 3 times a week and an antiviral 4 times every single day to try and prevent her getting shingles again.

Bianca still has another 10 months and 3 weeks left of treatment and if all goes well we will finish treatment around the 11th of September 2009. I understand that she will continue with the antibiotics for another couple of months after this date and her port will probably stay in until around 6 months after treatment is done. It will also be around this time (I think) that they will do a blood test that will tell us which of Bianca's childhood immunisations she still retained immunity for or whether we will have to do some or all of those immunisations again (of course I really hope we won't have to do them all again).

Right now Bianca is in remission. They usually try and achieve this within the first 5 weeks. However, remission for us means having less than 5% cancer cells left in the body, so it doesn't mean no evidence of disease, it just means that with the maintenance treatment we are hoping to kill of all those last remaining cancer cells.

When we get to that last day of treatment, we won't have any test that will tell us whether the treatment worked 100% or not. It will become a waiting game and once a month (I think for the first year) we'll go into hospital for checkups and thereafter it will change to quarterly and eventually once a year and so on. And I understand this will pretty much be like that until Bianca is much much older. So this is pretty much a lifetime thing for us.

The first year off treatment will be the biggest risk and there will be a 10% - 15% chance of a relapse and only when she reaches 4 / 5 years off treatment will they finally consider her "cured" as her chance of a relapse will be significantly less. Although that is not to say that it won't ever come back or that she cannot develop a different type of cancer.

If there is a relapse, then it would typically depend on when the relapse happened, where it happened and so on and then they will either look at just chemotherapy and in some cases they add radiotherapy and bone marrow transplants might become an option. Of course the ideal is that there will be no relapse and that the current treatment of chemotherapy will be successful as there are so many other risks and side-effects associated with radiotherapy and bone marrow transplants. So if we can avoid this, then that would definitely be our choice.

There are some types of leukemia or other cancers that can only be cured with a bone marrow transplant, but for Bianca's type (Standard risk, Pre-b Acute Lymphoblastic Leukemia), the first option is chemotherapy.

The best way for people to get involved with bone marrow donation is really to contact the local organisation in their area who might be responsible for adding people to the bone marrow register. When people with cancer require bone marrow transplants, they are able to try and find a match on this register (usually when parents or siblings were not a match). Here is a very good and informative site that is relating to how it works in New Zealand, but I am fairly certain that it is relatively similar in other countries too. And here is some info specifically on the New Zealand Bone Marrow Donor Registry.

So whilst you may not currently be able to help Bianca directly by offering to donate bone marrow, you might be able to help others who desperately need a bone marrow donor. And of course by donating blood, platelets and plasma you will also be able to help save lives - to date Bianca has had more than 30 blood product transfusions and without these she really would not have stood a chance.


Allison said...

Hello! I stumbled across your blog on Google Reader. My son had the exact same diagnosis and treatment plan as your daughter. He was diagnosed on Halloween of 2002 at age 3. Today he is a happy, extremely healthy, active almost nine year old. He has been off treatment for 3 1/2 years and is doing great. Just wanted to let you know that there is a light at the end of the tunnel! Best wishes for an uneventful ten months to come!

Anonymous said...

Hi Lea,
That was all very well explained and I learned a few things from your account. I think I will be very paranoid for the first year off treatment.
I hope that Bianca had a great first week back at school. And I look forward to hearing about your Make-a-wish.
Take care,