Emmas treatments in Mexico: Immunotherapy 3

Hi all

A lot has happened since last I wrote. I have been trying to collect information for bigger posts, but in the future, I will post smaller updates more frequent.

There has been a lot of things happening here in Mexico. It has been an emotional turmoil, to say the least.

We managed to get away for a day, to take Emma to the Bioparque Estrella, a nearby Zoo that is quite small, the cages are too small for the animals, but they do have a *huge* safari area, and hopefully the animals spend most of their time in there. Emma was happy. She got to feed zebras and giraffes and see a lot of animals.

It was a warm day, and Emma have some issues with the temperature when it is really warm. Fortunately for her, the temperatures have started to go down to be more bearable.

In Emmas case, she has been quite stable. The doctors see no progression at all in her tumour. When we are comparing the scans from when we arrive to now, there is no change in tumour size.

Some of the families in Monterrey currently doing this ground-breaking cancer treatment for their kids.

There is however a slight change in tumour intensity, and we can see in the graphs that the activity in the tumour is virtually none. This is very good news, but of course, not as good as some of the other kids are having, where their tumours have shrunk to less than half the size as when they arrived.

Emma is still happier and playing more. She even plays by herself now on occasion, something she hasn’t done in a long while.

Emma is still an avid fan of Peppa Pig, her absolute favourite. Peppa Pig .. and Spiderman!

We think she is starting to get a bit frustrated about not being able to walk and do things as she pleases, as she has been acting out on occasion and having some anger issues when she don’t want to brush her teeth, things like that.

Just recently she had a nasty fall off he bed, when she wanted to do more than she was able to (something we see happening a lot. She wants to walk, but has balance issues. She wants to go climbing, but she can’t), she was trying to slide off the quite high bed, and her leg/foot did not have the strength to support her weight, and she fell on her foot and thigh, and slammed them quite hard into the marble floor. Fortunately, nothing is broken, and she did not hit her head, just internal bruises, but it made a little girl who already have issues walking to walk even less. Fortunately, she is still in a great mood most of the time and wants to play. She is just finding it difficult to do so. Mommy’s glasses are still a fun thing to play with. She just loves to dress up, this little girl.

We changed a few things in the treatment for her. For starters, when she needs to get a needle in her port-a-cath, we are now doing it at the nearby hospital by a specialized oncology nurse. This is due to some of the other nurses at the other place where we get some treatments does not have the experience enough to set a needle in a port.

It *should* be as simple as feel the port under the skin, hold it between two fingers in one hand, and poke the needle in with the other hand. One prick, and it’s done.

3 weeks ago, when a non-experienced nurse was going to set Emmas needle, she missed the port, tried again, missed, tried again … then kept the needle stuck in her skin, and started moving the needle back and forth under Emmas skin, effectively cutting through the underlying tissues in her chest while searching for the port.

Emma was screaming and crying in pain. We had to stop the nurse, who then tried again, and missed and started searching. We had to stop her trying for Emmas sake, as she was in a lot of pain and very scared. Not to mention me and Marta who were in tears after seeing Emmas pain and had to intervene. We were furious, to say the least.

That day, it took us five hours before we had a needle in her port and the chemotherapy could begin.

Emma bounced back from this as well, she always does.

She is such a trooper, our little Emma. No side effects from the treatment, always thanking the doctors for the medication and I’ve said it before, she is the bravest of all of us.

Today, we are going in for Emma’s third immunotherapy, where they will inject treated T-cells in her body to make her own immune system able to fight her tumour. It will be our fifth treatment overall since arriving here, and the costs are astronomical.

Fortunately, our living arrangements are cheaper than back home in Sweden, and the food is cheaper as well.

Tonight, I will get another update from our doctors, if they see a change in the size of Emmas tumour. I predict they will see no change in size. Again. We hope that it would at least shrink just a bit, but so far, nothing.

Don’t get me wrong. If it never grows again, ever, the immediate threat to Emmas life is solved, but as we don’t know if it s simply sleeping and will grow in the future or not, we’re still having a ticking time bomb on our hands.

Emma didn’t deserve this. She deserves to be able to run and play and go to school like all other kids. We’re fighting every day for her to get there, but since her tumour is large and slow to respond, it will take more treatments. It will take time and money.

The time bit I can fix, but the money, we need help with.

So far, Emmas treatments have cost over $130,000 USD. Half of what we made in our fund raiser in only 2.5 months. Fortunately, our cost of living is cleared, since we are using our parental sick days for Emma, but the treatments are extremely expensive.

*Each* immunotherapy treatment costs over $31,000 USD.

Here, Emma is adjusting to life and making new friends every day. The bigger stores started putting up their Christmas decorations at the end of August!

Right now, the stores are filled with stuff for the Mexican Independence day, followed by Halloween in October. Emma loves all the Halloween decorations, and when we encountered an animatronic of three witches making a brew of some sort, Emma stopped and helped the witches stir their cauldron….

Every time we see a zombie or witch or “scary monster” as Emma calls them, she wants to stop and is totally fascinated by them.
Daddy’s girl.

As usual, if you want to donate and help us: here are the ways:

Become a monthly donor: http://www.goemma.se/become-a-monthly-donator-for-emma/
Paypal: micke@askernas.com
Swish (Swedish phone numbers only): 0767-608 360