Clinic Update

We are back home in Charlotte.  Sigh.  It has been a long, emotional day.

We headed out at 6 AM to make the morning appointment in Augusta.  When we were about 45 minutes away, Matt said he felt tired; we pulled over so I could drive.  During this exchange, Matt got into some ferocious fire-ants and got stung on his feet.  Other than being painful and annoying, we didn't really think too much about it and went on our merry way.  About 10 minutes later he said that he was really itchy. I looked over and he was bright red, swollen face, and covered in hives!   We pulled into a gas station to get an antihistamine, but I was very concerned about this allergic reaction and wanted to get to the hospital as soon as possible.

We made it and Matt was pretty miserable for an hour or so, but had no difficulty breathing.  Pam and Kate, the Peds Hem/Onc nurses kept a close eye on him. Needless to say, we are going to get him an epi-pen STAT!  Kind of a nerve-wracking start to our big day!

Clinic went well though.  Ms. Kym and Beth (the nurse practitioner) surprised Mollie and Lucy by attacking them with silly string and giving them a huge Littlest Pet Shop playset to celebrate Mollie's last treatment.  They were thrilled!  The clinic has been renovated over the last few months and they just moved back into the new space this week so we got to check it out.  The individual TVs in the infusion chairs are genius- kept the kids busy while waiting for counts.

Mollie's ANC is low (700 by machine- probably <500 manually), but her hemoglobin and platelets are normal.  This is probably just a response to the increased dose of chemo she has been taking the last few months and probably also explains why some of her skin lesions have been slow to heal.  Beth put her on Keflex and hopefully that will help things clear up.  Since her ANC is low, they want us to hold chemo for 2 weeks.  Well, 2 weeks from today is Sept. 3.... so, no more chemo!!!  She will be officially off treatment (OT) on Sept. 4, but we have to go in to clinic on the 3rd for counts.  She still has the 5 days of steroids and she will be on the weekly Bactrim for the foreseeable future, but the nightly chemo is really done.  I don't think the enormity has hit me yet.

Dr. A did Mollie's lumbar puncture and it was uneventful; I went upstairs for a brief visit with Carson- he is out of the ICU and back on the 5th floor!  Mollie got a nice anesthesia-induced nap in the recovery room and then we went to Stevi B's for pizza.  Afterwards, we went over to Isabella's house so the girls could get a couple hours of playtime- they miss each other so much!

I couldn't help thinking about Mollie's diagnosis on the long drive home.  The first night she stayed in the hospital, after her diagnosis, Matt stayed with her.  I went home to be with Lucy and I just remember sitting in Mollie's bedroom, wondering if she would ever sleep in there again.  We are so, so lucky.  I couldn't have imagined this day, back then.


This Week

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.