Blood counts & geeky numbers.

Toby

Following chemo, every day in hospital is lived by keeping an eye on two things: Luka and blood counts.

We talk about his 'blood counts' often, and we often get a funny look from people as to "what does that mean". They are very important and how Luka is feeling is in large part to where the counts are for that day.

The chemo Luka has had is designed to kill cancer cells within the bone marrow, body & blood. In his first four chemo cycles, it ate away at the cells on the main stomach tumour and reduced its size by an amazing 95%, as well as his leg tumours, skull and shoulder tumours being wiped out.

Since having the main tumour taken out back in August, the subsequent chemo rounds have been about killing off cells left hiding in other places throughout his body such as his bone marrow.

Usually within 72 hours of chemo going in, the blood counts start to fall. This is what you want. Sounds horrible but it means the chemo is doing its thing. It takes up to four weeks for them to totally recover, but the first 10 days are the worst and then they start to stabilise.

We often refer to this time as "hell".

Not only does it wipe out bad cells, but good ones too. Energy falls through the floor, children become sore and achey all over, heavily fatigued and very sick in terms of nausea and diarrhoea.

There is also some other side effects such as hair loss, cracking skin, hearing damage, heart tissue damage, cracking nails and a few others that we keep private. The reason for those is because they rely on healthy cells throughout the body for normality.

The more short term risky part is that cancer patients are completely susceptible to bacteria and bugs because they have a limited immune system.

White blood cells.

White blood cells have a normal range of 4.5 - 11. The calculation of that and other cell types is different for everyone depending on how much blood you have but Luka's normal level sits around 6.

By about day 3 - 5 following chemo, he has 0.

People always ask "0 point what?". The answer is 0. Just 0. As in nothing, they are gone. For context, most adults will still hold onto some white blood cells in a range of 3 - 4 following chemo.

The aggressiveness of the chemo Luka & other children have, along with the inability for their bodies to fight, means they are completely wiped out.

Whites take about 10 - 14 days to recover to an acceptable level.

Neutrophils.

Neutrophils are another type of white blood cell that are critical to the immune system. Normal range for Luka's age is about 8.

Within a week, these will also be 0.

Neutrophils are produced out of the bone marrow and also take 10 -14 days to recover. To speed this up, we give Luka a daily steroid injection into his arm. We do this ourselves as he is more comfortable with us doing it. Teddy also gets a dose lately as this helps to calm Luka down, normalising the experience for him.

A daily blood test is done at 4am , and as the neutrophils start to recover they will usually track each day at something like:

0 > 0.01 > 0.02 > 0.05 > 0.1 > 0.8 > 1.7 > 4 > 8 (all clear).

Again we get asked "well how does he survive without white blood cells".

White blood cells and neutrophils main role is to keep your immune system functioning. In theory you could live without them, however eventually you would eventually succumb to some bacteria and have no immune system to fight it.

There is bacteria everywhere, it is unavoidable and so it is about keeping the really nasty stuff out.

This is what leads Luka to have infections and fevers easily. So at hospital he is placed in a negative pressure room for his entire stay and the door cannot be open for longer than 20 seconds while he is 'neutropenic' (no white cells). Nurses are always wearing PPE when working with him, every line going into his blood system is sterilised heavily and his Obs are taken every few hours.

Any sign of a fever results in a full 7 day course of antibiotics within the hour of the fever starting.

We have had two rushed trips to hospital in the middle of the night when he was up to 38 - 40 degrees (normal 36.4) and completely floppy. Not fun but Dad gets to drive through town fast for those trips at least.

The first infection Luka got was caused by a bacteria that was commonly found in the 2003 Iraq War among US soldiers. How it got into Luka we have no idea!

Red Blood Cells.

These are the important ones for day to day survival as they carry the oxygen around your body. Low red blood cells has a big impact on energy levels and general feeling - as in "I feel flat".

Normal level for Luka - about 130

We are told that if a child is feeling "flat", their levels may be somewhere around 100. Viruses and general sickness can cause you to get to this level.

Following chemo, Luka's sit around 65. They take 10 - 14 days to recover and stabilise by themselves but before this they need to be topped up with red blood transfusions every few days.

Platelets.

Platelets is the final number that is closely monitored. These stop you from continuing to bleed when you get something like a cut, and you can bruise easily when you have a low count. They play a smaller role in immunity.

Normal level is above 150. Below this is considered low.

Luka's today is 25, he has got down as low as 10.

Recovery & stabilising is again 10 - 14 days and need to be topped up with transfusions.

Transfusions.

Blood transfusions are something most people would never expect to have and when we started this journey we were told Luka would have a few at times.

We never expected how many that would turn out to be. All up so far, Luka has had about 25. As I type this he is getting a red blood top up.

Reds and Platelets require transfusions during the low phase to keep the numbers at an acceptable level. Platelets take 1 hour, Reds 3 hours.

Each bag of blood has had about three people contribute to it.

It was a strange feeling starting the first transfusion, the thought of someone else's blood going into Luka is odd but we have come to accept it and are very thankful that people donate.

Katelyn has donated since the age of 16 every three months and ironically donated two days before Luka's first transfusion in Christchurch and we are fairly sure Luka received her blood on that first one due to the timing and same blood types.

Today's blood counts.

Red Bloods: - 65 (receiving transfusion).

Platelets: - 25 (monitoring, possible infusion tomorrow).

White Bloods: - 0.2 (first day above 0).

Neutrophils: - 0.03 (second day above 0)

Hopefully this signals we have reached the bottom and are turning around!