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My computer is sick... so I'll be offline (hopefully) temporarily :(

Clinic Update

Mollie's clinic visit went well today-we went in the afternoon and there was nobody else there!  Her ANC is 1100 (perfect) and other counts were great.  We forgot to put the Emla cream on her port to numb it up, but she let me rub a little cream in before they accessed her and it was no problem.  She is such a champ!

Even though everything went smoothly, Mollie was a little cranky and teary.  I still haven't figured out why; my best guess is that she was tired.  She has started her steroid pulse so I'm expecting more tears and frustration (for both of us!) over the next few days.

Oh, I also learned that her last spinal tap wasn't her final spinal tap like we originally thought.  I had assumed that since her "end of chemo" date is Sept. 3 that this chemo cycle, which ends ~Aug. 20, would be her last cycle.  But the protocol calls for her to continue with the next cycle and then just stop chemo mid cycle on the "end date".  It seems kind of arbitrary to me, but it means that Mollie will have a spinal tap in late August and will stop chemo on Sept. 3.  No problem- Mollie seems glad she gets to see her nurses in the OR one more time.

She got to hang out with Ms. Kym today at clinic and is starting to get excited for Camp Rainbow.  If you want to send her a letter or package at camp, make sure you get it in the mail next week so it makes it there in time for camp!

In Full Swing

Summer has arrived around here- sweltering heat, big bugs, mosquitos, weeds. Not my favorite season here in Augusta and with Lucy in her cast, it is even worse. We are staying indoors for the most part because when we go outside she wants to play in the sandbox. Sand and casts are not a good combo!

Mollie is enjoying her second week at summer day camp and is in pretty good spirits over all. She loves seeing her old buddies from pre-K! Tomorrow she has her monthly IV chemo/steroid pulse- I made her appointment in the afternoon so she can participate in the craft activity at camp in the morning.

Lucy is now walking on her cast pretty well (and climbing the stairs when I'm not looking!). She's got spunk! She knows how to manipulate and she's not letting any broken leg slow her down.

Liam is sweet as can be and growing so quickly! I am in search of new carseats for him and Lucy. They are both about to outgrow their seats; unfortunately, Lucy's seat is also expired, so I can't use it for Liam. Anyone tried the Graco Nautilus seat? Or any other recommendations for a seat for Lucy?

We are chugging along...

2 Years

Two years ago today, Mollie was diagnosed with pre-B cell acute lymphoblastic leukemia. It was the lowest, scariest day Matt and I had ever experienced. When we got the diagnosis, we were shocked. In tears. Afraid that we were going to lose our baby. We agreed that we would allow ourselves to grieve that one day, but the next day we were going forward, doing our best to adjust to the new normal.

I can hardly remember what life was like before leukemia entered the picture. Lucy was an infant, almost exactly the same age Liam is now. Mollie was a toddler, learning to adjust to being a big sister. Matt and I were learning how to parent two children simultaneously and contemplating future plans/career paths.


June 17, 2008 was kind of a re-birth for our whole family. Everything changed. Walking Mollie down the kicking-ass-on-cancer path became our focus. At times, it has been scary, stressful, frustrating, physically demanding, and emotionally draining. It has taxed all of our resources. But it has also brought us closer together. We've seen how fragile and tenuous life is. And what a blessing!

In the 2 years since her re-birthday, Mollie has blossomed into such a wonderful big kid ! She is so caring and concerned for others. She's bubbling with energy and thrilled that she can now express herself in writing and can read EVERYTHING around her. Like me, she doesn't remember life before leukemia.

I don't often use the term 'survivor' when referring to Mollie, but for this day I will. I don't generally think about our lives being that different from 'regular' families without pediatric cancer because if I go there, I start feeling sorry for myself. But today I will think about our struggles and our strengths. It has been 2 years of some really tough stuff, but I still feel lucky. And hopeful for the future.

Quick Update

Lucy got her cast on today... and she will be able to walk on it (hence the cute little shoe). And we go back in 3 weeks for an X-ray to see how it is healing.


Oh, and Mollie has developed a cough so I am praying that doesn't turn into anything!!

This Week

The last 2 days have been a major challenge. There's the emotional aspect of seeing my child in pain and knowing that she can't enjoy some fun summer activities. And then there is the physical exhaustion. The 2.5 year old who doesn't understand why she can't walk, doesn't feel good, and is completely fickle is really something to contend with (she: I want the pink one, no the green one, no the pink one. me: OK, here. she: NO! THE GREEN ONE! I SAID!!!). Add an exclusively nursing 5 month old and a 5 year old on summer break, and it is a nightmare. Matt had to be in Charlotte today, so I was by myself. Michelle sent her babysitter over for a few hours and that was a tremendous relief (thank you, Michelle).

Mollie has been going to day camp this week at her old preschool/child care. This is both a blessing and a curse. It is nice to have one less child in the house for part of the day, but then I don't have her help in keeping Lucy occupied. Mollie is loving day camp- she was very excited to see some of her old buddies from pre-K, especially Colby Grace!

The rest of this week month summer is chock-full of milestones and events. Tomorrow, Lucy goes to ortho clinic (my friend Carrie is going to help me with the logistics since Matt will still be in CLT) and it is our 9th wedding anniversary! Thursday is the 2-year anniversary of Mollie's diagnosis!! Then, on the weekend Uncle Sam is coming for a visit, we will celebrate Father's Day, and Matt's dad (Grandpa Charlie) is flying out to stay with us for a few weeks. Mollie gets her monthly chemo next Thursday and then we will start getting her ready for Camp Rainbow! She leaves July 5. Our move is on hold until we have a better idea of Lucy's treatment plan, but we'll fit that in some time this summer!

That reminds me, if anyone wants to send her a letter or package while she is at camp, please e mail me for the address. Mail should be sent the week prior to camp to make sure she gets it while she is there. Last year she loved all the cool mail she got!

I am exhausted just typing this...

Broken

Our dryer.
Lucy's leg.
My spirit.

Well, not really on the spirit part, but it does break my heart to see my bold, energetic little 2 year old laid up in horrible pain.

Eating her 'popicle' after getting her temporary cast.

Our weekend started off on Saturday with the discovery that our dryer was spinning, but not heating. That led to some DIY attempts at dryer repair, to no avail. Man, was I peeved about that. The dryer is less than 2 years old and was a replacement for a dryer that died before it was 2 years old. Talk about bad luck!! The repairman is coming tomorrow....

We salvaged the day with a trip to the lake for some afternoon cooling off. Mollie, Lucy, and Bella had a blast playing in the sand. I was impressed that they spent a long time building sandcastles with some little boys who spoke only Spanish. I think 'play' might be a universal language. We topped off the evening with pizza and a sleepover.

This morning, Bella's mom came to pick her up and invited Mollie and Lucy over to play for a while. While they were jumping on the trampoline, Lucy tried to spin around and started crying when she landed. She wouldn't calm down and we could tell she was really in pain. Matt thought she should go to the ER (good call, Matt. I would have waited until the urgent care clinic opened and taken her there), so we headed down to MCG. As it turns out, she fractured her tibia. She is so tough! She cried and was clingy in the ER, but not the kind of cries that I would have expected with a broken leg. It was interesting how honest she was with the doctors and nurses: she screamed and cried when they touched either leg, but she was very clear about which one hurt and which did not. She is in a temporary cast until we can go to the orthopedic clinic on Weds. I should have more details then, but it looks like she will probably be immobile for the next 3-4 weeks. I will certainly have some questions to ask in regards to "why" because leukemia is [always] on my mind.

It is so awful to see Lucy in pain and I am heartbroken that she has to go through this! She already has it tough with an older sister with leukemia and an infant brother, now she has to deal with this. At least she's getting plenty of love and attention. Mollie has been really great, playing with her and keeping her occupied all afternoon. I am going to be winging it the next few weeks. This puts the brakes on potty training, the move, swimming & summer activities, at least for the near term.

Luby Doo, we love you! And we hope you start feeling better soon!