Über busy. Among other things, we're still trying to organize/unpack, learn about our new home/neighborhood, get Mollie ready for school. To top it off, Mollie has her last spinal tap (for real) on Friday.
Matt was out of town for a long weekend camping with his friends, so I held down the fort and tried to keep the kids busy with some summer activities here in North Carolina. We went gold panning at Reed Gold mine (site of the first documented discovery of gold in the U.S. for all you Californians) and Mollie found 2 tiny little gold flakes. I was more excited than she was- she thought she would find big nuggets! And Lucy was just excited to get her hands in the muddy water.
We also had a lovely lunch with Mollie's kindergarten teacher at Ikea (the kids love that place) and visited Matt's grandparents in South Carolina. It has been good to spend a little time with people we know since moving to a new place can be very isolating.
Mollie is doing well. She has had some skin issues (reminiscent of last summer)- a few rashes, blisters, and sunburn/abrasions on the backs of her hands. We have been very diligent about sunscreen and she seems to have a reaction to it no matter which brand we use. The 6-MP and Bactrim that she takes daily can both cause sun-sensitivity so those are probably contributing. In any case, you can tell she and Lucy have been outdoors enjoying the summer. They have the scrapes and band-aids to prove it!
Please keep our friend Carson in your thoughts and prayers. He has been in the ICU for 9 days suffering from rare toxic side effects from chemotherapy- liver toxicity and fluid in his lungs. His mom is doing the best she can and my heart really goes out to her. It is so, so hard to see your child suffer and not be able to do anything about it. You just want so badly to take control, to know how long you're going to be there, to know the "plan", and to make it all better. Mollie has not been in the PICU, but I can imagine it is many times harder than being in the hem/onc unit. I do know that nothing will really help except for Carson getting better.
Glad to hear that the family is doing well.
ReplyDeleteI have been following Carson's saga - very frightening - and I don't even know him. He is in my thoughts and my prayers. I obviously don't know his mom but I do know what it is like to have no control and no plan (been there, done that and even got some t-shirts).
Hopefully you and Mollie will make some new friends when Mollie starts school.
Is Lucy going to a school too? (baby school as she called it)
Also hoping the spinal tap goes well. I'm sure that makes for a long day.
You guys are in my thoughts every day.
BTW have you found a dermatologist for Mollie? Maybe that isn't even applicable but OTOH it may help with the rashes, etc. I highly recommend Dr. Ju in San Leandro but it is quite a trip!
Mollie should be getting a package soon.
Love you guys...
Congratulations on Mollie's last spinal tap--as well as the start of school. Nicola may have some recommendations about sunscreen since she is so sensitive to everything. Thanks for sharing the Working Mother entry. Carson and his family are definitely in our thoughts and prayers.
ReplyDeleteBig big news for Mollie. You have been on my mind a lot. Keeping Carson in my toughts. Positive thoughts hold a lot of power!
ReplyDeleteWoooHooo!!!!!! I'm so excited that today is the LAST spinal tap, whoop! whoop!
ReplyDeletePraying you all get well adjusted to your new surrounds and love it as much as you did Augusta.
Way to go Mollie for finding gold, that's so neat. We miss you guys!
It sounds like our little ones have the exact same diagnosis, what with spinal taps, 6MP and Bactrim (although my guy got taken off the Bactrim and now takes a daily scary-yellow medicine instead). Nicola told me about you. I can so relate to the skin issues: we went through major major skin issues with our son several months ago--could not take him outside at all. Now he is fine. We think his was mostly caused by an additional antibiotic that he was on for many months but eventually got taken off of. He was quite a sight for awhile: bald head, sunburn, and scabs all over. He looks totally healthy now--has one more year of treatment to go. Best wishes to all of you and especially Mollie. It sounds like she is really close to the end of treatment!
ReplyDeleteYay for the last one!!!! Heart-breaking to hear about Carson. Will definitely be thinking of him and family.
ReplyDeleteHave you tried Neutrogena sunscreens? I am allergic to everything in the world except for that one (and even then, I can't wear their face+spectrum line). I know it isn't the same thing, but maybe that one would be more sensitive?