On June 27th, we set sail (well, technically we flew) for Monterrey in Mexico.
After a few very stressful weeks, we managed to pack our personal belongings, putting our stuff and essentially our lives in storage and left all we know for an unknown future.
We were scheduled to have one stop in New York, and a restful 4.5 hours before proceeding to Mexico. Plenty of time to go through immigrations, pick up our bags, go through customs, recheck the bags, grab something to eat and finally go through the security check again before boarding the plane. An easy trip.
Or so we thought.
The plane was about 2.3 hours delayed from Stockholm!
This made our lay over time very short, and once we arrived at JFK airport, the personnel that was supposed to operate the gate was not there, so we had to wait an additional 15 minutes for them to arrive.
Once we got off the plane, we had 1 hour 35 minutes until our next flight was leaving, and we still had to go through US immigrations, a procedure that sometimes can take up to two hours, depending on when you arrive. After immigrations, we still had the luggage, customs, rechecking the bags and a security check to do.
Fortunately, we had booked wheel chair assistance for Emma, as she has issues walking, and that made all the difference for us. We had someone to drive around Emma in a wheel chair, and got access to all the fast lanes available.
Once we got to the security check for boarding, with 45 minutes before the plane should take off, 4 out of 4 bags were scheduled for random checks. The medication, the electronics, everything. Typical.
We hade it out of there, just in time. Once we arrived at the gate, the boarding started almost immediately. We were going to make our flight. We were going to make the first appointment which was the next day!
Monterrey is a very beautiful city. It is in fact several cities grown together, sort of like Los Angeles, and we technically spend most of our time in San Pedro.
Our first consultation with Emma was on Wednesday the 28th, and it went well. The list of complications that could happen during the procedure included stroke. Not a thing you really want to hear when you’re going in for a severe treatment like this.
Normal side effects are: headache, back pain, tired, dizzyness, back pain, nausea, vomiting.
On the morning of June 29th, we went in at 9 am to the Hospitales Angeles de Valle for our first treatment. After paying the hospital fee of $87,000 mexican pesos (not including the cost of the medication and the fee for the doctors, which will be at least twice that amount; roughly $15,000 USD in total (or in Swedish krona: about 140,000 SEK) and several hours of waiting, Emma got rolled in to do her first MRI and do the arterial incision treatment.
Two hours later, we are standing in the Intensive Care Unit waiting for her to wake up. Dr Siller came in and told us that everything had gone very well, the catheter had been inserted in the groin, with a small hose going all the way up to the brain and the procedure had been a success.
While drifting between sleep and half awake, her pulse rate is fluctuating. Not something you want to see, but her pulse went as low as 48 beats per minute and sometimes up to over 90 beats per minute. Fluctuations as such is not bad, but this was going up and down and quite erratic, and was a bit unsettling.
We were told that it could have to do with the anaesthetics, and the fact that she was half asleep, half awake and drifting back and forth. Someone also mentioned this could be due to the steroids.
Fortunately, her pulse went back to normal, and once she woke up, she only wanted one thing: food!
First meal after this experimental treatment: A banana!
After we got rolled out from the ICU a few hours later and spending the night at the hospital, Emma woke up in a great mood (way too early for me, as usual) and demanded food. I mean that. Demanded.
She got her favourite: Scrambled eggs.
We’re now at two days after the treatment, Emma is doing fine, no visible side effects, but she is rather tired. That’s ok. I’ll take tired any day over any of the other side effects.
Our most pressing hurdles is our apartment in Stockholm, which is still not rented out, and it bleeds money. We need to get our lovely place rented out as soon as possible, so please help and share this link:
We will be staying here in Mexico with Emma and have treatments every 17 days with time for Emma to recover in between and once we start doing the immunotherapy, costs will go through the roof: ONE immunotherapy treatment costs about $30,000 USD, or in Swedish terms: About 250,000 Swedish krona.
We have at this point no idea how many Emma will need, but the variation is somewhere between 4-7 treatments, just to give you an idea of how much it will cost us.
As usual, if you can, please donate on https://www.youcaring.com/goEmma or if you are in Sweden, you can always send a Swish payment to 0767-608 360.
Thank you all from the bottom of our hearts for giving us the chance to save Emma’s life.
-Micke, Marta and Emma.