So much to tell you and so little time...
So much seems to be happening nowadays that it sometimes seems to be impossible to keep up on it all. Where to begin?
Well, first off all last Friday Linnea finished her 5 weeks of radiation therapy, where she has had radiation of her three meningosarcoma tumors in the spine, and also the meningosarcoma tumor in the brain.
As we've written before two of the three tumors in the spine were gone after just two weeks of low dose radiation, and the other day we got an update on the other two, I'll tell you more about it further down.
The last day at the hospital where Linnea did her radiation was an emotional day, the staff in the radiation department all came afterwards and they had a suprise for Linnea: a beautiful cake, baloons which they all signed, and a present.
There were hugs, tears of joy, and everyone was happy and touched to see Linnea done with her treatment and doing so well.
The same week Linnea had to draw blood in preparations for this weeks immunotherapy.
The blood is sent to a lab and her immunecells are separated (T-cells and Denditric cells) and trained (pulsated) with material from Linneas own biopsy of her tumor to teach the cells to recognize specific antigens on Linneas tumor cells.
This meant that in one day Linnea had to go through two separate anesthesias, the first for radiation, and then just a couple of hours later another one for when blood was drawn at the clinic.
Then this week we went to the clinic two days to do so called "light chemotherapy" where Linnea is given two sets of mild chemotherapies system-wide in her whole body. The reason for this is to clear out the micro-environment surrounding the tumor as there is typically immunosuppressive cells there, its one of the ways that the tumor hides from the body's own immunesystem.
We stayed at the clinic for a few hours each day, Kristian and Linnea played iPads, we read books, and Linnea got the light chemo.
Then finally yesterday Linnea was scheduled for her 18:th IA treatment, this time together with her 5:th Immunotherapy as well.
The procedure went very well and when one of the doctors came out afterwards he was very happy to say that there was improvements everywhere.
- The DIPG tumor was improving
- The 3rd and last Meningosarcoma tumor in the spine was improving
- The Meningosarcoma tumor in the brain was improving
We're still waiting for the full effect of the radiation therapy to become visible in the MRIs as typically it takes a while for the results to be seen, so to have these early results are very encouraging.
Also the fact that the DIPG tumor is improving is fantastic, and going forward we have yet to see the results of the coming two immunotherapies as well.
But for now Linnea will be enjoying two weeks of no treatment, no clinic and blood draw, and no more radiation therapy every day.
It will be great for her.
Finally thank you so much everyone who has helped us, in the last updates we asked for your help with the fundraiser and the response in the last week has been fantastic. We're now very close achieving the spring fundraiser which will help us pay for the next immunotherapy and chemotherapy when we achieve the goal. It's been tough and after radiation therapy and immunotherapies we've had to pay an unexpected 55.000USD extra.
After the immunotherapy is done the current plan is to go down to 4 weeks treatments again which will give Linnea a well deserved extra week of rest in between trips and treatments.
You've all been fantastic helping us spread the word and enabling more people to help us with Linneas treatment.
Thank you from the bottom of our hearts.