No word yet on the MRI

It's a good sign, though, honestly! The radiologist knows immediately, even if they don't send the official report for a few days, what the score is. Every time we've had bad news through the MRI, they haven't let us leave the hospital.

Abbie's doctors are a busy bunch, treating kids from all over the world. If they haven't returned my calls yet, it is because they are busy dealing with some other kids who are in immediate and acute danger. Trust me, I'm more than glad to wait if that means my kid isn't on that list.

That being said, of course, I'm calling them again tomorrow. But I'm not worried.

Our day, part II

Once Abbie has fully woken up, and downed her popsicle, the nurse takes her IV out and I help her dress. Abbie never even bothers to look at the IV.

Then we wait for about half an hour because I need to sign one more paper.

Once we have said goodbye to everyone who has been nice to us (and that's just about everyone) and exited the recovery area, I ask Abbie how she is feeling. I am carrying her, because she still can't quite walk, but she is finally awake enough to talk.

She says she is starving, so I take her to the cafeteria where she eats...

And she eats....

And she eats......

Two gigantic slices of pizza and one adult-sized cup of pudding later (pudding comes first, because it is easier to swallow) she is finally fully recovered. We make our way down to the lobby, and Abbie still needs to hold my hand but can otherwise walk on her own. We have been in the hospital for seven hours. We bid goodbye to the rainbow colored hot-air balloon (our favorite one) and then we are ready to go back to our normal life.

Normal life is wonderful.

Our day

I have been taking way more pictures than usual lately because I have been so overjoyed to have a camera again. In that spirit, I decided to document this morning and afternoon (plus I realized that I have very few pictures of Abbie in the hospital, and we should have at least a few to show her when she gets older.)

Blogger will only let me attach 5 pictures to each post, so this will continue on to the next post.

Here's what happens when Abbie gets an MRI.

First, we get to the waiting room an hour early. They insist on our being there an hour before the scheduled MRI, and usually this means that after I've signed about a dozen papers we sit for an hour and a half. Today we were lucky, and after I signed some papers and Abbie played with the fancy sticker the nurse gave her (because she is so adorable), we only had to wait half an hour. Hooray!

Once we are in the back room, Abbie changes into a hospital gown. She began, when this all started, by wearing the peach ones, then graduated to the green ones. Now she is in a blue one, and I can't believe how big she is getting.

Abbie asks, "How many pictures are you going to take?"


She is weighed and measured and they ask me about five million questions and have me sign a few hundred pieces of paper.

Then we wait for about half an hour.

The nurses give her a toy because she is so adorable.
Then we wait for another half an hour.

Once we are good and settled in our little hospital cubicle, a nurse arrives to escort us to the anesthesiology room. Abbie is given sleeping-gas (she usually chooses the bubble-gum flavor) and she quickly falls deeply asleep. Today, she immediately began to snore which made us all laugh.

(I was too busy holding her to take pictures of this. Plus, those anesthesiologists are a nervous breed.)

Once Abbie was settled into the gurney, I ran to the cafeteria and downed a quick cup of coffee and then sat in the waiting room alternating between re-reading The Brothers Karamazov, peeking at the other people in the room, and dozing with my head in my hand.

Exactly two hours later and three minutes later, I was called back to sit with Abbie while she woke up.
When I first came into the recovery room, she looked like this:
I hate seeing her like that, and I only took the one picture.

After twenty minutes or so, she finally woke up. She was groggy and couldn't sit up straight, but she immediately began to pull on her nose tube. She hates the nose tube.

The nose tube was already out when the nurse came in, so she disconnected it and removed the blood pressure cuff and the glowing oxygen monitor, and then I was able to lift Abbie out of her bed and sit with her in my lap. She is heavier than she used to be!

We sat there for about half an hour, just rocking, and then the nurse brought Abbie a popsicle and some applejuice to check her swallowing. They won't let us leave until they are sure she can swallow, and once upon a time this was an ordeal. Abbie had so much applejuice during her two long hospitalizations that she refused to drink it for about a year afterwards. So when they would bring her the carton of applejuice after an MRI, she wanted nothing to do with it. But they wouldn't let us leave until she drank it. Chris once waited until the nurse wasn't looking, and drank it himself.

Today, though, Abbie slurped that juice down in under thirty seconds and reached for the popsicle.

She was extremely groggy, tired and dizzy. But it was 1:00 in the afternoon, and man was she hungry.


She devoured that popsicle before she even knew where she was.
The nurse gave her another toy because she was so adorable.

Cont'd in next post!

Pray for our girl, please

Abbie is having an MRI tomorrow. We feel pretty confident about it as she has been getting nothing but stronger, but these things are always wrought with at least a little fear. Please say a prayer for our wonderful and quirky little girl.

Ramblings

Lucy is 17 months old, an age that I have been waiting for, thinking about in the back of my mind, since her birth. This was Abbie's age when her tumor was diagnosed.

Abbie at 17 months
Lucy is absolutely healthy, and I have no (and have never had) any cause for concern. Brain tumors are not genetic. But I figured that I would breathe a sigh of relief anyway, once she'd passed that milestone without showing any worrying signs. And I do feel better, a bit relieved, but it has also been strange to watch her. I can't help but mentally compare the baby that Lucy is with the baby that Abbie was. I watch Lucy and I think - Lucy can do this, and Abbie couldn't. Abbie could say this, but Lucy doesn't need to.

This isn't to say that I am obsessing over this, or anything. I don't dwell much on Abbie's ordeal, or at least I make a conscious effort not to. This is the sort of thing that a person can get bogged down in forever, and I don't want that to happen. Abbie is healthy, and thriving, and hilariously quirky and I want to be able to fully appreciate her. If I can't let go of the past's hardships, I can't give the present's joys their due. I have four other daughters as well, all of whom have been fearfully and wonderfully made, and I want to fully appreciate them. As Mother Theresa said: The past is gone. The future is not yet here. We have only today. Let us begin. Sounds right to me.

Lucy at 17 months
I'm going to tell you about Thursday, however, and why this period has been a little...unsettling, I guess, is the best way to put it. I was cleaning Lucy up after her breakfast, and she was resisting me. There were little flakes of oatmeal stuck under chin, and to prevent me from reaching them Lucy craned her neck down, so that her chin touched her chest. I was simply in the moment, trying to clean up this psycho baby, when Lucy looked up at me with her chin still lowered. I'm not sure I can really even explain what happened. I was no longer in our house, looking down on stubborn little Lucy; I was standing in my townhouse looking down on Abbie, and thinking, "What in the world is wrong with this baby's neck?" It wasn't that I remembered the fear, and worry, and heartbreak of that time. For that split second, I was there, feeling it.

This lasted no more than a second. I shook myself, finished cleaning Lucy up and got the girls ready for school. I barely thought about it again that day. Chris took the younger girls up to visit his parents, so I had the morning free to run errands, and then I volunteered in Claire's class all afternoon. It was a good day.

That evening, Chris and I settled in to watch the VP debate. We're both feeling pretty bitter and jaded about politics these days, so we were mainly making snarky comments to each other, or expressing frustration with this non-answer, that smoke-screen. But when Biden began talking about losing his wife and daughter, and he choked up for a moment Chris turned to me, just in time to see me burst into tears. I cried through the rest of the debate. I couldn't even really tell you why.

So, there. I haven't bothered to even analyze why I wanted to put this on the blog. I know that I wanted to acknowledge, in some way, that - hey! - Lucy made it to 17 months and things are looking good. And I guess in some way, too, I'd like to say : We hope the worst is over, and everyone is doing really well. But, you know what? It was all really, really hard. Please don't stop praying for my family.

I'm not ashamed to shill for these people!

Coming soon to a Rite Aid or Costco near you! (That is, if you happen to live in the DC/VA area.)

If I had realized that they were going to just copy the synopsis of our story that I thought was just for filing purposes, I would have spent more time making it sound better.

In any case, if you happen to see this around then #1 - let me know! and #2 - drop a dollar in the cup. This hospital is doing good stuff.

p.s. Chris says that if he knew they were going to use this picture, he would have cut the grass!

All About Bejabbers

Abbers Bejabbers, that is.

Before going into Pittsburgh, Abbie had her bi-monthly (or so) MRI. They knew that we were leaving town, so the oncologists graciously took the extra time to look over the scans while Chris and Abbie were still there, so that we wouldn't have to spend the weekend worrying about the results. No tumor growth! More of that "unremarkable" wonderfulness. :)

We were worried that her hand strength had declined veeeeeeeeery slightly, so the wait for this scan was more nerve-racking than usual, but it's looking like the apparent weakening is mostly due to Abbie being a lazy 3 year old who sometimes just doesn't want to pull up her own underwear. She was a champ at the hospital, though. As always. It's like she read all those articles about the stereotypical brave/plucky/saintly cancer kids and decided to make that her MO. She follows instructions exactly, never complains (even when it involves needles), and keeps smiling and laughing throughout. She even, when offered a stuffed animal, politely declined, telling the nurse that she has enough toys right now, thank you. (Granted, Abbie had a point. I could literally fill a walk-in closet with all the stuffed animals and various other toys this kid has been showered with at hospitals. People see that little cloud of golden hair and are immediately compelled to lay offerings of teddy bears and baby bunnies at her feet.)

I'm proud of this kid. And, too, I am so grateful for this time we have with her. She just gets sweeter, and funnier - so much funnier! - with every day. She is just the quirkiest little thing, and I am often awed by the privilege I've been given to be her mother.

I recently bought some pomegranate-scented hand soap for my bathroom, and for some reason Abbie is just in love with it. She generally uses the hall bathroom, but several times a day I will see in my peripheral vision a streak of naked toddler coming out of the bathroom, and hear a distinctive little hee hee hee giggle. It's just Abbie, "sneaking" into my room to get a shot of the smelly-soap. Once her hands have been washed (and her pants put back on, without help if she is feeling like a big girl, with help if she's in a hurry) she'll invariable make me smell the faint traces of pomegranate, and smile up at me, waiting to hear how beautiful she smells. And I tell her that she smells beautiful. I say it every time. And I thank God for this miracle, that my little girl is here, and healthy, and obsessed with smelly soap.

Outside of the Castle of Miracles

Outside of the Castle of Miracles
Originally uploaded by moleshollow

Let's see if I've done this right.

If I have, these pictures should show you where we have been for the past week! Look for a huge old post soon detailing how wonderful the trip was, and in particular how wonderful both the Make a Wish Foundation and Give Kids the World Village are!!!!

"Unremarkable"

"Unremarkable." It's a beautiful word! We got the official report today from Abbie's MRI, and they've seen no increased tumor growth, and less enhancement. The report ended with a sentence that made me so happy I laughed out loud:

The remaining spinal cord appears unremarkable with no contrast
enhancement appreciated.

After all that Abbie has gone through in the last year and a half, it is a miracle to think that her poor little traumatised spine is now "unremarkable." Do you know what that is? It's remarkable!

Because I'm sure you're dying to know how potty-training is going

Much better! That one horrible day seemed to be what we needed to get on track. Abbie has been doing great since.

She did backtrack some yesterday (with very good reason), though, and we had a very busy day today so I've kept her in pull-ups all day. Hopefully we won't have lost too much ground when we go back to underwear tomorrow.

Abbie had her routine MRI yesterday, and we haven't heard anything yet, so that's a good sign. She did amazingly well keeping her pull-up dry - she even kept it dry through the sedation! (Although the required fasting was probably responsible for that. ) She stayed dry throughout her recovery and the entire drive home, as well, though. She was very loopy and couldn't keep her balance after the sedation (perfectly normal), however, so we just kept her in a pull-up and gave her the day off.

Here's hoping tomorrow goes smoothly!

Go figure

I gave up today around 3pm.

This was the third day of potty-training, and by far the worst. For the past two days, Abbie has had very few accidents, but I suspected that she was just holding it all in until the evening when we put her diaper back on. So I stopped at the store this morning and bought a mega-jug of apple juice, and a pack of fiber-laced Pediasure.

It worked. It worked on the carpet, on a blanket, all over several outfits, and on those foam child-chairs with the cloth that can't be removed.

Abbie told me that she didn't use the potty because she didn't want to stop playing. At least she recognizes the problem. My (usually tried and true) method is to go straight from diaper to underwear (so no pull-ups) and make the child clean the mess themselves when they have an accident. I sneak in my own cleaning, of course, but the kid is given some paper towels to soak up the water and a bucket and scrub brush. They usually decide that it is less work to use the potty like a civilized human being, but it isn't working this time because Abbie thinks that the clean-up is fun. Meanwhile, I feel like I've been swimming in urine all day.

So I gave up after accident #umpteenth and put her in a pull-up. Not ten minutes later she jumped up and ran into the bathroom, executing her duties like a pro. Her pull-up was bone-dry.

I need a drink. (And I do not mean applejuice!)

I haven't been posting because

We are potty-training.

Pray for us.

And please avoid the hall bathroom.

Struggling to understand

I was asked to contribute a story for a Catholic book project, compiling stories from women with special medical diagnoses in utero or for small children. So, here's what I wrote:

They did not receive what had been promised
but saw it and greeted it from afar
and acknowledged themselves to be strangers and aliens on earth,
for those who speak thus show that they are seeking a homeland.
Hebrews 11: 13-14


When I heard the news I was sitting in the Pediatric Sedation waiting room, across from a terrible mural of sea-life. The painting was very colorful but the fish were all malformed, elongated and disproportionate. The shark’s fin had been drawn on a different angle from the rest of its body so that the fin lifted away, attached at only one corner. I remember thinking that the fin looked like it was going to escape, the shark on the verge of losing its most defining feature.

“Is she going to die?” I asked. I hadn’t meant to ask, but I was overwhelmed and frightened and it was the only thing I could think of to say. My eyes were still on the shark, his stupid floating fin making me angry. My 17 month old daughter was asleep next door, a large tumor having just been discovered in her spine and brain.

The radiologist was silent for a moment before answering. He was very earnestly and bravely trying to make eye contact with me, but I couldn’t do it. “I don’t have an answer for that,” he finally said. “She should not be able to move at all with a tumor that size. What we should focus on is the miracle that she can walk.” The tumor ran the entire length of her cervical spine and then up into her brain stem. The MRI images from that day are horrifying; to the untrained eye it looks as if her entire spine is filled with cement.

The staff called my husband, who was out of town, and then sent us immediately to Children’s National Medical Center in D.C. By that evening we were settled in a room on the Neuro/Ortho Surgery wing, where my husband eventually joined us. By the next morning, Abbie had begun to lose the co-ordination in her legs. She was no longer able to walk.

It had happened too quickly for us to fully process it. My memories of the days before her surgery are surreal. We rocked Abbie in her hospital bed and walked the halls in a bleary-eyed daze. I couldn’t sleep at night because I felt the need to savor every moment left to hold my baby. I don’t remember praying, but I am sure I tried. Prayer was very hard in those first few days, my mind was so overloaded and my heart so heavy that although I could turn my mind to God, I felt I had nothing to present to Him but a feeling sometimes of sorrow, sometimes of fear. I would hold Abbie in my arms and lift her to Him in my mind, but I did not know what to ask. I wanted her to live, certainly, and I wanted her to remain whole, and yet I felt afraid to ask for these things. The presence of God in those days was something I felt, but heavily, and with fear and trembling. In the sufferings of my child, I felt that I had encountered a side of God I had not really known, had heard of but not truly believed. My own suffering was a thing I expected, a thing just and deserved. But my child? This little baby on my lap, with her curly blond hair and her quirky little smile, and her innocence: was I expected to accept the suffering of this angel? How could that be?

On the day of her surgery I woke up curled around her, and just lay in the bed looking at her face. I held her, still sleeping, all the way to the prep area. My mind was blank; I did not, could not pray, I did not, could not think. The only thing I was capable of was soaking in my daughter and feeling my heart break with love for her. A nurse took our hands and said a prayer for our daughter’s safety, and we were grateful to her for initiating what we couldn’t. Then they took my baby away. We walked into the waiting room like zombies, and like zombies we sat for the 7 hours it took to rid my daughter’s spine of the tumor. I said one rosary, incapable of actually processing the prayer: it took me two hours. I had no words; in my heart was just one long wail to God, one long cry for help. I felt that for the first time I had some understanding of Christ’s cry of “Abba!” on the cross. I understood for the first time the anguish behind the question, “Why have you forsaken me?” When the surgeon appeared in the door, his eyes bloodshot and his face pale and lined, I thought I might collapse. My husband’s hands were shaking so much that he dropped his book and it skittered across the floor. I felt like Jacob on the mountaintop, poised to accept the sacrifice of my dearest one. An angel had saved Isaac, but I felt no assurance that Abbie would receive the same reprieve. The face of the surgeon said nothing but weariness, and the thirty seconds it took to walk across the waiting room to where he stood was the longest moment of my life. But mercy had prevailed, the news was positive. Abbie’s heart rate had given them trouble throughout the surgery but she had made it through okay. She was going to live. Time would tell if she would sustain damage, but he felt hopeful that she would eventually make a full recovery.

The surgeon had done his job well, and Abbie’s spine was almost entirely clear. There was still a large portion of the tumor in her brain stem, however, that would require chemotherapy and possibly radiation. We hardly had a thought for those hardships, however. We were giddy with joy, radiant with hope. Family came to visit her and was aghast at how weak she was, almost immobile, but all we could see was the hope in the faint wiggling of her fingers and toes. People assured us that they were praying for Abbie’s complete healing, but all we cared about was that she had lived. We were not looking for flashy miracles, healing our daughter through the gift of medicine gave no less glory to God In our eyes. We were so happy, so eager to help our daughter heal, and willing to open our minds to the mysterious workings of God. The question of why my daughter was allowed to suffer, now that she was safe, seemed a worthy academic pursuit, something we could ponder as she grew stronger day by day. Our mistake was in believing that we had approached the end of our journey.

Our God is a God of awe and majesty and mystery. These are not merely pretty words; it is a mistake to ever think that we know the plan of God, or that we can ever truly understand His ways. Two months after Abbie’s surgery, just as she was re-learning how to walk, she again lost control of her legs. The tumor, despite the weekly chemo treatments, had grown and she would again need to undergo surgery. When she had first been diagnosed with cancer we had been dazed and afraid, but now, after we felt we had put our trust in God and passed the test, now we were angry.

We admitted that the suffering of the innocent could bring about unthought-of graces. Abbie’s cancer had brought out the best in many of the people around us; family and friends, and even some complete strangers, had been so moved with pity by our daughter that the outpouring of love and support was truly overwhelming. There are many people who reached out to us in ways that will forever touch our hearts. Our other children as well had been moved to an Inspiring level of selflessness and bravery. We felt that the world around us was a better one for the influence of our little one. Now, though, now that the lessons had been learned and the faithfulness of those around us had been proven, why was our baby still called to suffer? Sure, her pain had brought out the best in those around her. Sure, it taught us lessons about our marriage, our family, our faith. Sure, it showed us how blessed we truly were. But still all of these lessons, all of this good fade to grey when you weigh it against the suffering of a baby, any baby, let alone our own darling one.

When Abbie was taken back for surgery a second time, the sedation did not work. She was awake, and terrified to find the strange doctor carrying her away from us. They assured us that she would have no memory of being taken away, but as she was carried out she began to cry, “Mommy, don’t! Please!” I walked to the waiting room with her voice haunting my ears. Over the next few hours her cries replayed in my mind over and over again until it was no longer her voice crying out to me, but me crying out to God. As she had cried out to me, so I was crying out to God with the sophistication of a toddler. I was grateful beyond words knowing that there were hundreds of people praying for Abbie at that moment, because I was again paralyzed in prayer. I felt that I was standing before God, and His Son, and even His gentle Mother whose comfort I had always sought, and I was lost in the weight of their purpose. My only prayer was a kind of sigh, a sigh of awe and fear and desperation. I felt like someone drowning, and I could only hope that the wave of prayers for my daughter would lift me up enough to catch my breath.
She again recovered better from the surgery than anyone could have hoped, and the rest of the year progressed much like we had expected it would. Abbie is walking again, and has just now been given a reprieve from chemo. To anyone who might see her in passing, she looks like a healthy, happy, sweet and silly little toddler. We are so grateful for her health, so grateful for her life. We have hope that her future will be a bright one, although there will always be a chance that the tumor in her brain will grow again. So mixed with our happiness is a sobering dash of fear. When I look back at our darkest days, I see the many blessings that have come from our crosses. Why the heaviest cross had to be carried by the weakest and most blameless among us, though, I will never understand. Abbie will probably not even remember her time spent recovering from brain and spine surgeries, but that does not lessen the memory of her suffering for those who love her. I carry a heavy question in my heart that will not, I think, be answered in this life, and yet my faith in God has not diminished. I am pained that He allowed my baby to suffer so much more than most people encounter over a lifetime, and yet I am thankful that in His mercy He did not take her from us. I suppose that I do not need to understand why it happened in the first place, anymore than Abbie understood why her parents allowed the doctors to carry her away. Perhaps there is some spiritual cancer hidden in me that could only be resected by the suffering of my child. Perhaps there is something greater at work, and Abbie’s suffering will right some wrong of which I will never know. It is perhaps not for me to know. I am simply called to believe, though I do not understand. Why would a God who is all-good allow an innocent child to suffer? It is a question I have no answer for. God allowed His Son, who was also innocent, to die on the Cross. That is the only answer I am given.

Good things!

I have been shamefully behind on here, and I have no excuse. Lots of good things have been happening, though, and it's time to talk about some of them!

First of all, Abbie is off the chemo! It was the best feeling to get the call from our pharmacy and be able to tell them that we won't be needing anything this month.

The scans of Abbie's tumor have shown no significant growth in the past year, so there is a good chance that the tumor is dormant. She'll continue to get scans every couple months, and as long as the tumor stays stable we will....just live a normal life. :) We are so happy to give her scrawny little body a chance to recover, and the break from the many hospital visits is a nice bonus. She continues to get stronger, and in fact was released from PT shortly before the end-of-chemo appointment. I could tell that the physical therapist was sad to discharge Abbie, and I felt like it was this all over again. This PT was a wonderful woman, and we liked the group therapy sessions but as the girls would say, see ya, sucker-john-suckers! With the end of each cancer-related activity it feels like we are slowly climbing our way out of some underground bunker, where each step brings us a little more fresh air. It is a good, good feeling.

Also, making all of the girls super-excited, we got this:

It is official! The Make-a-Wish Foundation is sending us to Disney World this winter! We still can't believe it!!! The Make-a-Wish people have been truly amazing, and I have been more and more impressed with this organization with every passing week. They've been sending little things in the mail to keep Abbie excited until the big trip, and they have been remembering the other girls as well. They really think of everything. It's hard to believe that we qualify for this, especially since Abbie is doing so very well. I'm grateful, though, because it has been so nice to see the girls this excited.

So - good things going on around here! I'm not particularly the hand-waving type but: Praise God, from who all blessing flow.

Oh, hey! We also have some good news...

On top of the baby and all, we have a great update on Abbie!

She had an MRI a few days before Lucy was born, and the results have come in: the tumor has not grown at all, but there is significantly less dye enhancement. What this means is that the tumor is potentially going dormant! That would be absolutely wonderful, because then Abbie could be taken off the chemo and radiation could be delayed indefinitely. Her spine is also looking much healthier, meaning that most of the damage from her surgeries has been healed. So we'll see how her next MRI looks, but we now have a glimmer of hope that she may be spared radiation at such a young age.

All in all, very good news to get before having another baby! :)

Oh, and Abbie....

...Is doing just fine. The infection is completely gone with the removal of the line. They still haven't identified what the actual infection was - they sent a specimen to the Mayo Clinic, it was so exotic, so it is definitely for the best that it is gone.

She feels just dandy, and the only lingering issue is the fact that she has finally realized what an opportunity she has to milk sympathy. If she wants a toy that Claire is playing with, she is now very likely to remind Claire in a pathetic voice that she's "so sicky." When she wakes up in the middle of the night (the hospital has wreaked havoc on her nighttime routine) she almost always tells me that she can't sleep because "I'm sick. I'll throw up."

Wow. Time to dial down the pity for little brain-tumor-girl, before she turns into a monster. The problem is, she is so darn cute and knows exactly how to charm everyone. The biggest danger is not that Chris and I might spoil her, but that her sisters might. She has the three of them completly wrapped around her little finger, and they seem to be defenceless against her powers.

It just may be that this new baby will truly be the one to "bring balance to the Force," since the Force is so unusually strong in Abbie. But like Darth Vader's last encounter with Obi-Wan, I don't know that she will like the competition.

Home at last!

Abbie had her line taken out today, and is now resting happily in my bed upstairs. Her bloodwork kept coming back with bacteria present, so it was obvious that the infection had reached her line. Now that the line is out, though, the infection should clear up right away (she's still on antibiotics, but we no longer need to give her the high-powered stuff through IV that she's been on the past few days.) We'll go back on Friday to have more bloodwork done, just to be sure, but it seems safe to say that she's in the clear.

The positive in all of this is that as long as nothing happens to neccessitate (sp? too lazy to check it) another line being put in, she'll finally be able to take regular baths and go swimming this summer! To quote Abbie, "Whee-hoo!" This is going to make the summer so, so much easier!

It is funny to think that this hospital stay -- all due to that stupid "fever-less" stomach bug -- has ended up being only one day shorter that Abbie's second brain surgery. Thank goodness they let us go home today! We were all starting to go a little buggy, although I have been extremely proud of how well the older girls' behaved through all of this. They spent quite a few days caged in that little room with us all day, and their behaviour was never less than impeccable. By the time we left, everyone knew about "that family with the five sweet girls," and the nurses were plying them with ice cream and stickers at every turn.

We're all pretty tuckered out from this unexpected week in the hospital, so now it's off snuggle in bed with Abbie and Claire, and murmur to myself, "there's no place like home!" :)

We knew this was bound to happen at some point, but it still stinks

Update 2/17 : The results are back, and the infection is still growing. This came as a surprise to everyone, and we still don't know for sure exactly what it means. The infection could possibly be in her line (the broviac) itself, in which case it will need to be removed. In any case, she's not getting out of the hospital anytime soon. Please pray.



Abbie had to be hospitalized due to an infection that reached her blood.

She's doing pretty well in the hospital now, the antibiotics are clearly already working and she's enjoying free reign over the t.v. and the loooong trips to the playroom.

The stomach-bug that I happily proclaimed a fever-free one turned ugly for Abbie in the wee hours between Wed and Thursday. I took her in to the Hem/Onc Clinic Thursday morning for some antibiotics, and they sent me home. Very early this morning, though, we got the call that her lab results were back, and that her blood contained a grand-positive infection, and that she needed to come back right away. And there she still is. Chris is spending the night there right now, and in the morning the girls and I will head back to relieve him. We're hoping for a clear blood culture in the morning, which would mean that Abbie can be discharged. There is a chance that she'll be have to stay through the weekend, though.

The scary thing about all of this is what a little, insignificant illness triggered the infection, and how quickly it spread to her blood. There was a space of about 6 hrs between the onset of a fever and the presentation of infection in her blood. That doesn't exactly give us much breathing room. What happens if her next fever comes while we're away from home? What would have happened if her fever had spiked just a day earlier, during a snowstorm? Whew. Please pray for her healing, and that luck (via God) continues to be on our side should this happen again.

p.s. this is written right before bedtime, after a week of no sleep and a day spent in the hospital, so please excuse any typos and/or spelling/grammatical errors. :)

Have iTunes?

I made a CD of songs that pertain to Abbie's situation. It's available on iTunes through imix. I thought I'd post the songs, because taken all together I think it really captures the way this all feels. A word of warning, though! We are lovers of Rock here, so....uh, some of these songs might not appeal to everyone. :)

The Tumor Mix

1- Theme from Blinking Lights..............................The Eels
2-Blackbird...............................................................CSN
3-Bad Day.................................................................Danial Powter
4-Wires......................................................................Athlete
5-Wonder...................................................................Natalie Merchant
6-We're All in this Together....................................Old Crow Medicine Show
7-Sometimes You Can't Make it on your Own.....U2
8-I Will Keep the Bad Things From You...............The Damnwells
9-The Funeral...........................................................Band of Horses
10-Alive......................................................................Pearl Jam
11-Daughter with It's Okay.....................................Pearl Jam (Live from Quickens Loan Arena)
12-Glosoli....................................................................Sigur Ros


A bit of an explanation:

3- This is Abbie's favorite song, hands down. And it is pretty relevant, since she's had quite a few "bad days." She started asking me to sing this to her in the hospital, and it's now a ritual (that we go through many, many, many times whenever we go back.)

4 - this song is about a baby born prematurely, but the lines "Running....down corridors....got to get to you, got to see this through" explain exactly how I feel any time I'm obliged to leave the hospital for a bit. And I love the lines, "I see it in your eyes, I see it in your eyes....You will be alright."

5- This is really more a tribute to my cousin, Mary, who passed away as an infant. I remember hearing my aunt and uncle say that it made them think of her, and it has made me think of her ever since. Mary has been in my mind constantly ever since Abbie's tumor was first diagnosed, and I ask her to intercede for Abbie all of the time. I have to believe that her innocent little soul praying for my innocent little child has to be very powerful.

8- This song is more of a love song, but I really identify with the desire to "keep the bad things from you."

11- Pearl Jam only plays this live, but the "It's Okay" segway has always been a favorite with our kids. This is another song I sing to Abbie all the time when we are in the hospital. The main lyrics are "It's okay...It's okay, you don't have to run and hide away. It's okay...It's okay, you know we've all seen better days."

12- This song was on constant repeat in my mind during both of Abbie's major surgeries. It's not in english, but it is clearly a song about a journey -- a long, difficult journey. The video shows children marching over mountains until they get to a cliff, and jump off..........and they all fly away. It is beautiful, and poignant, and one of my favorite songs of all time. And for me it reflects the hope I have that Abbie is going to be okay, and stronger for this ordeal. And the hope, or really the conviction, that no matter what she is in good Hands.


So, anyways, here's the link to the imix. If it doesn't work, I can email a link to you through iTunes. It's not worth it, though, unless you are actually going to buy all of the songs. But I thought I'd put it out there, just in case. :)

Here's the link from my email:

Congratulations, your iMix "Soundtrack to living with an ill child" has been published in the iTunes Music store at:http://phobos.apple.com/WebObjects/MZStore.woa/wa/viewIMix?id=201489222

Hooray!

We just came home from meeting with Abbie's oncologists as well as her surgeon, Dr. Myseros, and thus far things are looking good! Finally! :)

The tumor does not seem to have grown at all, although the MRI showed some areas with increased dye uptake. That does not necessarily point to anything bad, however; it could be due to any number of things, most of them either indifferent or, gasp!, positive. Since she is doing so well physically there is little cause for concern at this point.

So, two more months of chemo and then another MRI. But we're finally starting to feel a little more hope that things will continue to go well. I was all tied up in knots on the drive to DC this morning, but when we came home I suddenly noticed what a gorgeous day it is! Thank God for the fall, and for allowing us to enjoy it with our beautiful little girls!