Grade 1, Day 1

Yesterday was the last day of steroids (yay!) and also the last day of summer (boo!).  School started today.  I am struggling, but Mollie did amazingly well.  New school.  New bus procedures.  She knows no one.  Yet, she got off the bus smiling and telling me she had a great day!  She is my hero!

I can't stop comparing things to how they were in Augusta (bad, I know, but I just can't help it).  We had such a wonderful staff at the school and Mr. B, the bus driver, was one in a million.  It's just different here, new, and I don't know what to expect. There are other circumstances making back to school harder for me this year. Mollie isn't a brand new kindergartner any more, so they don't coddle them nearly as much.  And, aside from her teacher and the school nurse, no one knows about the leukemia.  You can't tell from looking at her and we decided we didn't need to send home a letter to her classmates this year.  If she chooses to talk about it,  she can.  We may ask her teacher to say something to the kids about her absences (at least once per month for clinic), but probably not.  It is hard for me to meet and talk to people without immediately telling them about the leukemia- it has been such a big part of my life.

Mostly, I am wondering where my little girl went.  Now she's a big first grader!

Mollie and Liam on Mollie's first day of First Grade

Soaking in the sprinkler on the last weekend before school starts.

Steroids, Day 3

We are 50% of the way through this last round of steroids.  Mollie is having a tough time because this is the highest dose she has been on since the beginning of treatment.  There are lots of sibling fights and hurt feelings.  It makes me so glad that Lucy was too young to "get it" for most of Mollie's treatment.  This morning she was crying over how Mollie was treating her; I doubt she will remember it and I am so glad it will be over soon.

Some photos from Friday:

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.

To the Point

Check out this short and pointed article in Working Mother.

Every single sentence in this article is something I have thought or experienced.  

I live with it every day, but I don't often dwell on the reality that my child has cancer.  My child has cancer!  It intrudes on our daily lives in the form of anxiety & worry, chemo side effects, the need to always have back-up plans and carry the Huber needle, Emla cream, and thermometer.  But mostly, it takes time away from doing normal things.  How many hours have we spent in clinic waiting rooms, the ER, or the hem/onc unit?

I look forward to September 3 (Mollie's chemo end date) with trepidation, survivor's guilt, and a feeling that by celebrating, we are tempting fate. I plan to use these feelings to help do something about childhood cancer.  I haven't decided what, but I'm mulling it over.  You see, one of the most tragic aspects of pediatric cancer, is that the people who most want to advocate for these little patients, are also the most overburdened and exhausted.

We're Back

Just a quick note to say we're back from California. We had a great time visiting family and friends and all the travels went well.  Now we are back in our new house with quite a bit of unpacking and organizing to do. We are all jet-lagged except the 2-year old...figures!  It will be a while before we're back to normal around here.  More details from our trip when my mom sends me the photos!

One of our clinic friends, Carson, was admitted to the ICU last night after 5 days in the hospital.  The docs don't have a definitive answer, but they think that Carson is experiencing liver disease as a side effect of the chemotherapy.  We are praying that he makes a steady recovery. 

Deep Breath

I can't convey in words how full the last week has been.  The move has gone pretty well so far; the movers did an excellent job and took much better care of our belongings than we would have.  Our new place is about the same square footage as our house (fingers crossed for it to sell quickly), but a different layout, so I am having to rethink how to arrange everything.  But, we are settling in.  My aunt Sally is here visiting, helping with kids & unpacking, and providing good company.  We are making progress unpacking boxes (and boy are there a lot of boxes to unpack).  It is wonderful to have the market just a short walk away (less than 2 blocks) and the pool just 3 blocks away. 

We went back to Augusta on Sunday and stayed overnight with our good friends for Mollie's appointment on Monday.  Mollie and Lucy had a great time with Isabella- it was the perfect way to prepare for a week of steroids.  Mollie received her monthly chemo and her counts were perfect again:  ANC is 1800!  She is tolerating the steroids pretty well this week.  The evenings are rough because she is tired and hungry; she wants to eat, but she can't make up her mind about what she wants.

Last night Lucy spiked a fever of 103.7.  She was feverish all night and into this morning, but it seems like she is recovering now.  I don't handle fevers very well any more- I want a CBC. Stat!  Now we just have to hope that the rest of us, especially Mollie and Liam, don't come down with the same thing because we are headed out for vacation on Saturday.