Just for my own amusement

Let's see if this works

Good answer

Yesterday, Abbie was doing her "Mommy pilllow!" routine, where she insists that I lay with her on the couch. I was getting frustrated because there were things I needed to do, and at one point I snapped, "Abbie, I am really not that great!"

Beth, who overheard me, immediately replied, "Well Mom, to her you ARE"

Not the answer we were expecting

I am not feeling very well today. Maybe it's the death-throes of my twenties, maybe it's the sleepless nights due to the steroids that Abbie is on, or maybe, just maybe it's the baby making me sick.

As I was laying on the couch in a stupor this afternoon, after conspicuously and rudely crashing in front of a friend who was here visiting (and who had so nicely brought us dinner -- I'm so sorry I was grouchy, Vanessa!), Chris jokingly told the girls that the baby was being naughty in my tummy. He loves to bait them, so he turned to Claire and asked her, "Should we spank the baby? That's not nice to make Mommy sick!"

Claire calmly turned to him and said, "No. That would be disgusting. She would have blood everywhere."

Uh -- who would have......? what would.....? I so do not want to know what Claire was visualizing in her head!

Poolside Reflections

The girls and I were having a quiet afternoon in the pool, when the differences between boys and girls became very, very clear to me. At first we were all just calmly doing our own thing - Claire and Beth were cruising the perimeter of the pool, Katie was swimming from one side to the other, and I was lounging and reading. The change came within seconds -- the quiet sounds of gentle splashing suddenly turned to screams and squeals, the calm water of the pool began to violently splash over the sides, the very air was charged with chaos. What made this huge difference? Chris.

He is incapable of #1 - getting into the pool without a big jump and splash #2 - refraining from picking up every body in sight and tossing them around. He even threw me, which is no small feat!

It's fun, I have to admit, to have this overgrown little boy horsing around. But he can't understand why the girls get nervous when he gets near them, and we can't understand why he can't just.....leave us alone. It would be boring without at least this one boy around. But it would be quieter! ;)

On another note:

Claire is a fish. Seriously, she is just a natural swimmer. If you toss her in the pool, she immediately starts to swim. The only problem here being -- she can't actually swim with her head above the water, but man she can zip around anywhere with it undernieth.

(For the life of me, I can't remember how to spell "underneith." Does the i come first or the e??? All those years of spelling lessons down the drain!)

It is just the cutest thing to watch her go, so fearlessly, in the water! It makes us both so happy. Little Larry in her natural element. Except that she doesn't have gills. And she thinks she does.

Growing up........kind of

Yesterday, I took Katie and Beth with me to the evening mass. Afterwards, while Beth picked acorns for her "nature collection" (a plastic bag with various rotting and molding specimens from the great outdoors. This is her greatest treasure, and she always "needs" to pick up a new acorn after mass,) Katie paraphrased the homily for me. She remembered it remarkably well, and had understood the gist of it.

Afterwards, we ran to the pharmacy and then to the store, and Katie bagged the groceries while I used the self-checkout. As we left, I complimented her on the great job she did bagging (she really did!) and she replied, "Well, I was just pretending that I was on Endurance (a rip-of off Survivor for kids) and I had their music in my head."

After reflecting a moment, she said, "I think I'm becoming very grown up. I have a lot of grown-up thoughts now."

Not Everything that happens in Vegas...stays in Vegas

I'm pregnant.

Stop. Take a moment to breathe. Yes, I am pregnant.

So....let's chat for a moment. I am guessing that a lot of people will hear this news, and think, "What? These people are crazy!!! Don't they already have a baby -- a baby with a brain tumor??? Haven't they already had to make major life changes because they are already overwhelmed? Stupid, rabbit-like breeding Catholics!"

Well, here is the truth: I have moments when I am very scared. I don't know what our life is going to look like 8 months from now. We know that Abbie will need 6 weeks of radiation, but we don't know when that will be. We don't know how sick the chemo will make her, or if it will even work at all. I don't know what it will be like to have the girls in a traditional school - as the first day looms, I'm starting to wonder if we've actually just created more work for ourselves rather than less. I can't see the future, and it worries me that this baby will arrive in a time of chaos, frustration, or - dear God forbid - sorrow. I am afraid.

This, though, is also the truth: I have moments when I am filled with an absolute glowing joy, thinking of the life growing quietly inside of me. In my heart I knew that our family was not yet complete, and it is exciting and wonderful to think that our family has not yet been defined, and that we are one step closer to becoming who we were meant to be. And I can think of many, many positives this baby will bring to our family. I am excited. We are all excited, and we are all happy to have something so positive - an adorable, sweet-smelling, funny little baby- to look forward to.

So, there we are. Feel free to discuss among yourselves, I just ask that you keep the three Socratic filters in mind while you discuss my family:

• Is it True?
• Is it Useful?
• Is it Good?

(And P.S. to Carol B. -- this title was just for you!!!! :) )

The next phase

We had Abbie's oncology appointment yesterday, and they told us that they do not really expect chemotherapy to shrink the tumor at this point. We are starting a new protocol, but this is really just to buy time before we have to move to radiation. The danger of radiation is much higher in children under 3, so if we can get through this next year and a half without the tumor growing it would be best.

So she's be getting a new chemo every day for five days, and then we'll have a 28 day reprieve. Then five days of chemo again, etc. After the second round, we'll get another MRI to see if the tumor has spread. If it hasn't, then they'll put her on a regimen where she will be getting chemo every day - the initial stronger medication layered with other, less-intense, medication. If the tumor HAS grown, though, we will need to move straight to radiation regardless of her age.

The biggest danger with this chemo is her platelet count -- so we'll be monitoring that closely. And, of course, we are worried about the tumor continuing to grow. Please pray that the tumor stops growing with this new medication -- we just need to squeak through these next 18 months. I am resigned to the need for radiation, but the longer we can hold it off, the better.

Regardless of when she gets it, though, it will probably not happen here. Because of her age, they recommend that we take her to Boston, where they have some super-new radiation thing that will affect less surrounding tissue. They are guessing that it will take about 6 weeeks, so, uh, that will be an interesting juggling act. I guess we'll just temporarily move to Boston? I don't know. But I guess that's really the least of our problems right now.

Hard decisions and brave little girls

We are not going to homeschool this year.

This decision comes by many hours of anguished prayer and hard, hard thought. But with all that we have going on in this family right now, I have to be honest with myself and face my limitations as a parent, and as a homeschooler. And it's just all too much, it is something that I know I can't do well this year.

So we told Katie and Beth two days ago, and my heart was in my throat as we sat them down at the table. In the end, I couldn't compose myself, and Chris had to do all the talking. Katie was, as we knew she would be, very upset. She loves Christiana, and she loves her friends there, and she loves having me work in the nursery. But I can't tell you how proud, and amazed, and humbled I was to watch this little girl have her cry out, and then pull herself together and just.......accept the change. She hasn't whined or complained or moped since; instead this 6 year old kid has listed the positive things that will come from going to "regular school," and has talked to me about ways she'd like to stay in touch with her CHA friends.

This is a blow to Katie, no mistake. But she's handled the bad news with more grace and dignity than most adults I know, and I am so so so proud of her. What a brave kid. What a smart kid. My hope now is that in the future I can handle major change with the grace of my little redheaded daughter.


(Oh, and Beth? Her reaction was very typical Beth: "Um, okay!" and off she ran to play in her room.)

Kiss the hurt away

I have ugly knees. It's just a reality, and I am OK with it. All those years of crawling around on the floor after my children haven't really helped matters, and I now have scabby, dry, flaky knees that make pedicurists cringe in horror.

Today, Abbie was playing in the living room when she suddenly came over to me with a concerned look on her face. "Aww," she said, cocking her quirky little face at me, "boo-boo!"
And then she slowly bent down the neck that bears a red and raw scar that extends about 1/2 way up her head, and she kissed my knees.

I've gotta think that when Christ said, "The kingdom of Heaven belongs to such as these," this was exactly the sort of thing He was talking about.

Fighting Fear

So, how are we doing?

We're doing really well. We are happy and relieved to see Abbie regain her lost arm and leg strength. We are glad to be back home, glad to be back among the girls, glad to have Abbie back with them. We are hopeful, hopeful that she won't need to undergo anymore dangerous surgeries, hopeful that we may be able to avoid radiation. We are overjoyed to see Abbie laugh, and dance, and try to run.

But, as happy as we are, under all of this runs an icy stream of fear. I've found myself suddenly paranoid about all sorts of things that I never sweated before: will the girls fall off the swingset? will Katie fall off her bunk bed? will Beth fall down the stairs? will Claire bang her head on the coffee table when she (again) jumps off the couch after (again) being told not to? It's as though, having once breached the nest of protection we thought we had wrapped our children in, Danger may now swoop in at any moment, at any unexpected time.

The moment of crisis, I've found, is often the easiest. When the oncologist at Sinai showed up in the waiting room that first time to tell me that it was a miracle my baby could walk, I could almost hear the clink as my emotions shut down, as I went totally numb. This time again, standing in the neurosurgeons office, looking at the MRI images that showed a tumor much bigger than it should be, I again almost heard that clink. Almost my first reaction was to laugh. You can't be serious. This couldn't possibly be real.

It's in the time after the danger has passed that I start to panic. When things slow down, I have the leisure to think about what could have happened, how close to disaster we were. I have the time to think about all the ways things could still go bad. Chris is so good in this way, his optimism really keeps me more grounded. But, deep down, I am still afraid.

This has been a summer for tragedies, it seems. We keep hearing about so many people this summer who have lost their children in terrible, unbearable ways. And I can't help thinking, what makes me think God will spare us when He doesn't spare these others? Putting your trust in God does not mean that He will keep all pain from you.

The Saturday before Abbie's last surgery, I ran into the National Basilica (which is convieniently just down the road from Children's) for mass, and heard a homily that seemed tailor-made for me. The priest was talking about the loaves and fishes, and he said, "People often think that God does not answer their prayers. But it's just that He gives us what we need, not what we want."

I read a paraphrase of a speech Fr. Groeshel gave at the wake of little Joshua Schmiedicke, the son of FUS alumni who died in a car accident last month, and I am trying to hold onto it for my own peace. So weak of me to be so disjointed when I still have the comfort of my little one sitting in my lap. But here's some of what he said, and I am trying to keep it firmly in mind when I'm overwhelmed with my own fears:

Why does God allow this kind of suffering? Regina mentions Joshua's favorite movie was The Passion of the Christ. In that movie, we see the Blessed Mother following her Son to Calvary. And the entire time, Mary was asking Why? Why does he have to suffer? Why does he have to be scourged? Why the crown of thorns? Why the cross? Stop it, please, please stop it.


But God did not stop it. He suffered, He died. And that is his only answer to the question of why.

Do not ask God 'Why?' Ask Him 'What?' What can I do? What can be done with my life, and what should I do to gain Heaven? For Jesus also asked why, on the Cross! Therefore, if our Lord asked why, and was answered by death on the Cross, so must we suffer with the loss of earthly possession, our earthly body, and our earthly selfishness.

What having a hole in your head actually looks like

Here is my little war-veteran:




Here she is at home, the next day:

A little aside: if things continue at this rate, by the time she reaches adulthood, Abbie will be half-human, half-machine. I wonder if her surgeon would be willing to give her laser-shooting eyes, just for fun.

Home!

I am very happy to report that we are back home already! The recovery from this last surgery is much easier than the first one, and Abbie is already walking around the house. Babies are amazing!!!

We immediately saw improvement after the shunt was placed, so that most likely means that most of her symtoms were due to that, and not to the tumor growth. This is a big relief, and it will most likely mean that we'll have more options for treatment. We don't meet with oncology until next week, so I don't know for sure what they will suggest, but neurosurgy seemed to think that we will have time to try different chemos insteading needing to move to radiation or surgery to remove the tumor. Surgery, as I've said, is very dangerous, and radiation would not be much less so due to Abbie's age. So, we are very hopeful that we will be able to give a more aggressive chemotherapy regimen a try.

This is just such a roller coaster, it's difficult to catch our breath. It really does look like the tumor had not grown as much as they feared, but it's hard to feel too relieved when we know that at any moment something else might pop up to put Abbie in danger. The constant fear is exhausting. Please continue to pray for us, and most especially for Abbie, who has really been a trooper throughout this. The hosptal does not bring out the best in her manners (she routinely commands the nurses and doctors to "Go away! Shut the door!"), but despite the fact that they carved into her skull this week, she has hit the ground running. God bless her.

Home!

First Step Done

Abbie came out of surgery well on Monday. She is already awake, and there is a noticeable improvement in the use of her arms. She is fighting the doctors/nurses as they poke and prod her! :) We now have to wait a couple of days for the MRI and then determine what the next step will be.
Please continue to pray!

To Clarify

Some of the details get muddled in all of this, so here are a few points to clarify the confusion some people have expressed:

• Abbie has cancer. Because most of the tumor was removed from her spine, it is primarily now just in her brain. Actually, what she has is not a tumor at all, it is an astrocytoma. So although we keep saying "benign tumor," the reality is that it is cancerous and it is growing. "Benign" in regards to an astrocytoma just means "slow-moving" as opposed to "fast-moving" malignant.
• Abbie's mobility was improving daily. Before she began to weaken, she was climbing steps and trying to run. This Monday, I told Chris that her arms seemed weaker to me, and he told me that I was paranoid. On Tuesday, he agreed that she looked weaker, and her OT told me that she was not doing certain exercises that she had been able to do previously. By Wednesday, she was slightly shaky when she walked. By Thursday she was very unsteady. By Friday her arms hung limp at her sides and she could barely walk a foot before falling over. We were admitted to the hospital on Friday.

Feel free to ask any questions you might have, and I'll try to answer them whenever I pop in here.

Bad News

We have just received some bad news about Abbie, and I am sending out the call to yet again beg all of you for prayers.

The short version of events is that an MRI of Abbie's tumor on Thursday shows that she has a very large cyst growing above the tumor in her brain stem, and that it has grown significantly again in her upper spinal cord. There is no explanation for why this has happened -- although the tumor is cancerous, it is benign (meaning slow moving) so we have no idea how it could have spread so quickly. There are several theories, but we won't know for sure until the cyct has been drained.

On Monday Abbie will undergo another surgery, where they will remove a small piece of her skull and insert a shunt to drain the cyst. We will then monitor her closely in the next couple of days to see what the tumor does, and how her mobility improves. If neither are good, then she will need to undergo another brain surgery, to remove the tumor from her brain stem. I cannot emphasise enough how dangerous that surgery would be. It is unbearable to think about, and we aren't going to dwell on it until we know for certain if it will be necessary or not.

Please, please pray for us and most especially please pray for my sweet baby.

The brutal truth

The girls and I were talking about grandmas tonight over mac-n-cheese. We had a friend over, so while he and Chris grilled some steaks on the porch, I boiled up the good stuff for our less discerning children.

We began talking about the wine glass I was sipping out of, something I cherish very much as it came from my Grandma Niccoli. (The glass, not the wine!) They were confused to hear that I had a Grandma Niccoli, someone other than their Grandma Niccoli, and this led into a discussion about generations, marriage, the passing on of names, and, finally, nicknames. The girls sometimes refer to their grandmothers as "The Grandma who sews" and "The Grandma who doesn't sew," and as we discussed this I jokingly asked them what their kids would call me.

Not missing a beat, not missing a beat! Beth responded, "Grandma Lazy Bum."

Want to see our pictures?

So, I've been trying to figure out how to make our pictures more private, so that joe-schmo-the potential-pedophile-down-the-street can't figure out how to get my kids. Paranoid, maybe, but.....So I've created a flickr account, that, as far as I can tell, is somewhat private. At least, I think it is.

So if you'd like to see the pictures I've put up (of the house and Becky's wedding) just email me (either through my profile here, or through my regular email) and I'll send you an invitation to view the photos!

Don't be shy about emailing me, either! Mom's friends, or Christiana people, or people who I don't even know who have been praying for Abbie are all more than welcome, I just need an email. :)

Forget who rocks the cradle, she who holds the remote....

We added DVR to our cable when we moved, but it's been a bear to figure out. (DVR is like Tivo, just the generic version.) Chris has messed around with it a bit, but still doesn't quite understand all the ins and outs of getting it to work. We haven't mentioned it to the kids, though, because........well, what do they care?

The other day, I called the kids up for lunch, and then ran downstairs to get something or other. To my surprise, Franklin was paused on the t.v. When I mentioned it to the kids, Katie breezily replied, "Oh yeah, we didn't want to miss the end." Seems that not only has she discovered the DVR, she is actually the current authority on how to use it.

My management of this household is on such shaky ground it isn't even funny. Any day now I expect to wake up to find Katie in the kitchen, frying up a few eggs while she sorts the bills. And I don't know how to handle it when it happens -- do I snatch the bills out of her hand and tell her to mind her own business, or do I just pull up a chair and thank her for the egg???

happy early fourth of july!

We let the girls stay up late tonight because the fire department in our neighborhood was putting on a fireworks show. The field they use is just behind our house, sort of seperated by a field and a little line of trees, so we were guessing that we'd be able to see the fireworks from our yard.

So, around 9, we grabbed a blanket and curled up on the porch to watch the fireworks. We could see them perfectly, but were far enough away that the noise wasn't freaking the girls out, and it was just really, really nice. Surrounded by lighting bugs, cuddled up together watching the fireworks light up the field behind the trees, it was a magic that we all felt. Beth, as so often happens, summed it up best when she said, "I can't even say anything about these fireworks! It's just too amazing!"