18 radiation treatments down- 13 left to go.
We are officially on the countdown to the end- and then the beginning.
Our oncologist gave us a start date today for Logan’s chemotherapy. June 8th. Exactly 2 months from today.
Five weeks after she finishes radiation. We will be going a head with the regimen from the study I found out of Italy. We won’t be participating in the study, but we will be using the same dosage.
The main drug is Cisplatin. It is a fairly ‘kick ass’ chemo but unfortunately we have heard it also kicks the ass of the patient receiving it.
We have a few tests we will need to do before we can begin this next step of treatment. Loggie will have an MRI to make sure the tumor has not progressed any further during radiation (our hope would be to see shrinkage) but as Dr. Hukin explained we might not be able to determine much. Apparently right after radiation is a hard time to distinguish tumor growth from swollen tissue.
I assume the MRI will serve more as a starting point for chemo, and they just want to make sure the tumors aren’t obviously bigger, because then there would really be no point in making Loggie sicker with the kick ass chemo.
She also needs a GFR (kidney function test) and an audiology test to measure where her hearing is after radiation and before chemo.
Cranial Spinal radiation can cause damage to hearing and unfortunately one of cisplatin’s main side effects is hearing loss. They tell us that some hearing loss is going to inevitable. Our hope is that it will only be minor.
Loggie continues to be very tired, and the redness and swelling in the back of her head is getting worse as the treatments continue although her complaints are minimal. I can tell she is frustrated and exhausted and usually by the end of the day she is very cranky.
Maui is only 2.5 weeks away and we really feel like we need this vacation.
At our meeting today we talked about getting ready for the trip. Our oncologist is not thrilled with us taking Logan out of the country so quickly after radiation but understands our desire to escape for a little while before chemo starts.
Today she told us there may never be a good time to go, so we had to take our opportunities. She said they will load us up with narcotics, teach me how to give IV fluids if she ends up needing them and we will make sure to top her up with blood before she goes. God forbid something happens over there (we are totally uninsured) I am to call, give her a shot of whatever drug they advise and get her on the first plane home.
Listening to Dr. Hukin talking I couldn’t help but think ceasing the moment is really kind of scary.
Diane was a nurse at one time, and I know that traveling with her will give us comfort. She will be helpful and although I am apprehensive about going I am sure everything will be fine.
In Logan’s words “The way I see it, I am going to be sick either way. I can either lay around at home on the couch for the next couple of weeks or I can go and lay under a palm tree on the beach. What would you choose?”
Good point- I love that kid. She has such an incredible ability to be optimistic.
Before I sign off I just want to remind you about BALDING FOR DOLLARS. You can find the home page by googling it or by visiting the link on Loggies webpage. If you are BRAVE ENOUGH TO SHAVE you can join or team or support Loggie by entering her name under the sponsor a participant “Logan Johnson-Lay” or to join the team it is “logan is our angel”
Our team is amazing and we’ve already raised about $4000.00
Balding for dollars is such a great organization and we want to give back in any way we can.
They provide basic necessities such as food, clothing and shelter as well as help pay for medications for oncology families. They also coordinate events for the kids and siblings, such as camps, sailing trips, sleepovers…the list of things they do goes on and on. Without balding we would really struggle to pay for Logan’s feeding tube supplies and nutrition. We appreciate all they do and are honored to be able to give back.
Logan went on air today to support the event. On Saturday her commercial will be played all day on JACK FM.
She did a great job!!!
“Don’t forget bald is beautiful” she said in her quiet cute little voice.
The foundation loved it and are now thinking of printing Logan’s slogan on hats that they will sell or give to the girls who shave their heads.
I LOVE IT. I am proud of her. I wish I was brave enough to shave!!!! (but I’m not)
