Sunday, April 23, 2017

Holding steady

Madi is doing brilliantly! She had a wonderful day yesterday.  She spent most of it sitting up, playing board games, and touring the hospital in a wheelchair. Physical therapy cleared her to go home after she walked around the neuro floor (where she's staying) a few times.  They even took her up and down stairs and trained me how to "spot her" in preparation of returning home.  They did not expect to discharge her so early, but she is doing really well so we may be able to go home today or tomorrow.  Her recovery from surgery could not have gone better.

One of Madi's best friends asked to come yesterday.  Madi has been slightly overwhelmed with people (nurses, doctors, friends, family, etc..), but she said she felt up to it.  She and Ella played the Harry Potter board game and we all laughed and joked and it felt like normal again.   It felt so good NOT to talk about everything for a while.  Ella also brought the whole Harry Potter movie collection with her.  Madi was ecstatic since she has been begging to watch the later Harry Potter movies for a long time.  Get brain surgery and your parents will suddenly not care about a lot of stuff :).

Madi and I laid side by side and watched the fourth Harry Potter movie.  I- of course- fell asleep halfway through, but Madi made it to the end.  When she woke up at 3:30 and had to go to the bathroom, we both woke up enough that we couldn't go back to sleep.  We laid next to each other, holding hands and talking until almost 5.  It was an incredibly fulfilling day for both of us.  It brought relief where I didn't know we needed it.   A day well-lived is a good day.  At one point in our conversation, Madi was talking about how nice it was not to be throwing up and having headaches anymore.  She said something about how nice it was to eat something without being afraid of throwing it up again.  She said something along the lines of "happiness is much better than fear." Even in my groggy 4am state, I still found that really profound.

So that's our goal from now on: being happy and grateful instead of being afraid.  Fear is just as pernicious as this stupid brain cancer we are facing, so we need to be done with it.  More later.


Friday, April 21, 2017

She graduated! We are out of the ICU!

Madi graduated from the ICU today, and now we are two floors higher in a quieter space.  She was able to eat a little, stand up (with help), use the bathroom, and really hasn't had much pain medication at all today.  The swelling in her eye is going down and she can now open it a tiny bit without using her fingers.  She is thrilled about this and keeps saying, "Mom, look!"  Every time, it takes me almost a full minute before I remember why she's having me stare at her :).  It seems like the old Madi is well on her way back and it's such a wonderful feeling.

I'm choosing to focus on this since we are awaiting the results of the MRI she got today.  Hopefully we will know more about this beast she is wrestling early next week.

She is humming as she's falling asleep.  She used to get in trouble in grade school for humming.  To me, it's the most beautiful sound in the world tonight.

Will post more as it comes...

Thursday, April 20, 2017

Theme of today: Appreciate my now

What an amazing little girl we have. She has handled all this like a champ. They have to wake her up every hour to check her cognitive function. She has to be fully awake to answer the questions. Every time they wake her, she pops to alertness and answers the questions without a word of complaint. She's just so sweet and cooperative. She has been amassing a small army of stuffed animals. Everytime someone gives her another one, she smiles and hugs it to her like it's a long-lost friend and keeps it with her in bed.

 The swelling in her head is normal and stable. All her vitals are solid. We are deeply grateful... cannot express how grateful we are that she seems to be doing so well. She looks like she's been in a bar fight with her swollen face and eye (well, a bar fight where the aggressor was a skilled barber who shaved a strip off the middle of her head). She is smiling and laughing, though not much because it hurts too much. They will keep her in the ICU for another night and hopefully if everything holds steady, she will get transferred into a regular hospital room tomorrow and get a more detailed MRI.

I love that we get so much immediate attention here in the ICU, but I admit- it's really intense. There is an infant next door who is clearly in a lot of pain. She has been crying non-stop since we've been here. I feel so bad for her and her poor parents. It brought back memories of my own colicky babies and I kind of wanted to rock in the corner, but since I was already rocking in the corner from our own problems, I called it good :) I think the kid on the other side of us passed away this morning because we saw a very sad family leaving with an empty wheelchair after a "code red" incident last night. My poor mama heart can't be here too much longer without soaking in others' pain and stress. I kept thinking of my friend, Jess, who worked as a nurse in the Newborn ICU (NICU) for a while. I have deep, deep respect for her and gratiude that there are people NOT like me who can handle it.

My challenge today has been trying not to let my mind "go there." I can't think about what life will be like in a few weeks or months or years. We just don't know enough yet to even know what we are dealing with. I have been sitting with Madi, holding her hand, listening to Harry Potter with her. Living in the now has always been my weakness. So I am trying to absorb this new skill, just enjoying the time I have here now with my sweet little girl.

Kurt is so good at this. One of the benefits of marrying your opposite (like I did) is that in times like this, he is everything that I cannot be (and vice verse). We are a good team and I'm so happy to have him here (not just because he tells me I'm beautiful when I look like death warmed over after a rocky night in the ICU). He's so good at compartmentalizing and focusing on the need-to-know information. He thinks when my brain is tired. So grateful he has been able to be here with us. I'm also so grateful for the messages and emails and texts that have come in and the army of people who have offered help. Thank you a million times over for all of it. One day, I hope I can express individually how deeply you all have sustained us already. THANK YOU!

Wednesday, April 19, 2017

No news is NOT always good news

Hello, my friends. We have decided to update our old blog after seven years so we can keep all of you up to speed on what is happening to our dear Madison. After weeks of trying to figure out why she was vomiting and having headaches, an MRI early this morning revealed that Madi had a mass in her brain that was causing pressure and swelling. The doctors said it was life-threatening and rushed us in an ambulance from Children's in Waltham (where we had the MRI) to the main Boston Children's campus downtown. They took her directly from the ambulance to the operating room and started surgery prep within five minutes of being there. We are all reeling and putting pieces together as they come. She is out of surgery right now and stable. The operation went really well. The doctor said we got her in just in time. Any more days (or hours) could have killed her. The good news is that they were able to remove a decent amount of the tumor - maybe as much as 75%. The bad news is that there's still 25% left and they believe it is malignant. They are waiting for the pathology reports to tell us what kind of cancer it is and then it will help us know better how to treat it. Early indications are that she'll be in the ICU for 2 days, then a regular hospital room for 3-4 days. Depending on how things go, she may be home early next week. In one to two weeks, we'll have all the pathology results back and will be able to work out a treatment plan with an oncologist. That will likely include radiation and chemotherapy. We will post more details here as they come, and truly appreciate your thoughts and prayers for Madison during this difficult time.

Thursday, October 21, 2010

Do I have to post a long post if I haven't posted in 100 years?

Good, b/c I'm not going to.  I've been gone a long time and a lot has happened since then.  The kids have grown up, I graduated, Madi started kindergarten, Max started pre-school, Becca's almost 2.  Madi's still wicked smart, Max is still over-the-top kind ("Mommy, you da best Mommy in da ho wowd."  or "Mom, thanks for making such a yummy dinner."  I could go on...), and Becca is about the funniest thing running around on 2 legs.  I feel like life's moving so quickly I can hardly take everything in. It's kind of like the feeling you have as a kid on one of those spinning tea cup rides... at first, you try to look around while you're spinning, but pretty soon, you just have to close your eyes and enjoy the thrill of the ride.  While, on the one hand, I wish I could document all these terribly funny and terribly difficult moments as I'm experiencing them, on the other hand, sometimes I feel like I should just close my eyes and enjoy the thrill. 

I would lie if I said I really wanted to blog (if that weren't really amply evident from my 4 month hiatus). I have such mixed feelings toward this funny type of communication.  It sometimes irritates me that even when I try to be honest about how imperfect our lives are, recording only snippets of the memorable times tends to paint a rosier picture than reality.  I've noticed myself comparing my own imperfect self and family life to snippets of others' best moments recorded on their blogs. 

I will probably still occasionally post, if anyone still follows this.

Here's a classic picture from this summer...

Until the next time,
Jenn

Madi strikes again

MADI (from upstairs, hearing me down in the kitchen): Mom, what are you making?
ME: Nothing.
MADI: Are you making chocolate chip nothing?
ME:: No.
MADI: Are you making peanut butter nothing?
ME: No, Madi.
MADI: Are you making pumpkin nothing?
ME (laughing): No, Madi.  I'm not making nothing.
MADI: Oh!  So you're making something?

I think she's training to be a lawyer.

On a different day, I heard her from the other room... "Six kenobi, seven kenobi, eight kenobi..." Then she pauses and says, "Mom, are there all those kenobis in Star Wars?"  (She derived this from the name Obi Wan "One" Kenobi... )

Sunday, July 11, 2010

A teaser...

I know it's been ages since I last wrote.  A lot has happened since then, and since I only seem to blog at 2am these days, I'm way too tired to catch up right now.  Until then, here's a video to give you a sense of why I've been so busy the last few months...


Friday, March 12, 2010

Let's not leave you out, Becca...

(drunk on Crayola brown marker ink...she sucked the thing until it was completely white...how do they know so young when to hide while they are getting into trouble??)
She has grown up so much since the last time I posted.  Love you, too, Bec!

Bye, everyone! Will post more after graduation...

Sweet Max

See, I do love you even though I ignored you in the Madi video. :)

Did you miss us?



I have been debating about whether or not to post this video... it was never meant to be public.  But it's been 3 months since I caught it on camera, and I still get so much pleasure from watching it, and laugh so hard every time, that I just have to share it.  I can't decide if I like the part where her robot dance turns to Primary stand up/sit down motions better, or if it's the part where she transforms into Rudolph before my very eyes (replete with prancing run).  Oh, Madi. 

I'm sad that I COMPLETELY ignored Max in this video... like not even an aknowledgement, really.  I am posting a follow-up with Max pictures to compensate and ease my guilty conscience.

I'm in the home stretch with my thesis.  One more month and life should be settled enough to put a little more effort into this blog 'o mine.  If you are still around and read this, YOU ARE A TROOPER!

p.s. I'm totally technologically impaired... I have no idea how to shorten/edit this video, so sorry it's 3 minutes... the best part is the first minute and a half or so...

Holding steady

Madi is doing brilliantly! She had a wonderful day yesterday.  She spent most of it sitting up, playing board games, and touring the hospita...