Monday, September 29, 2008

Mandy's best friend

Best friends come in all shapes and sizes. Think for a moment about your best friend. It wasn't a relationship you really had to pursue, was it? You just sorta clicked, didn't you? You hit your groove right out of the box with each other. Does your best friend make you feel better when you are sad? Does your best friend help heal you when you are sick? Does your best friend make you laugh? Make you smile? Make you feel loved? Make you feel accepted unconditionally? Of course. Because that's what best friends do.

About a month ago, Mandy was given the greatest gift in the world, friendship. True, unconditional, never failing friendship. My friend, Jane, had a poodle. A poodle that she loved and adored. A poodle that she believed in her heart was a dog that would be Mandy's best friend. I know she cried when she parted with her and decided to let Poodle come be Mandy's best friend. She knew then, what we know now. They are a perfect pair, a match made in heaven, two peas in a pod. We are forever grateful for this amazing gift she gave to Mandy about a month ago.

With that, I leave you with some pictures of Mandy and her best friend in the world, Poodle.

Whether they are snuggling on the couch,

going for a walk,

or having sweet dreams

They are always the best of friends. Thanks, Jane for the perfect gifts:friendship and love!

Love to all~

Sunday, September 28, 2008

October is right around the corner

October is almost upon us. In our house, it means all three kids are freakin' giddy about something.

Zachary loves Halloween. No, really. He LOVES, REALLY, REALLY LOVES Halloween. By far, it is his favorite holiday. He will easily be one of those people who has a whole haunted house worth of Halloween decorations that takes him from the first of September to put up every year. He can't wait. He was foaming at the mouth with excitement when the Oriental Trading Catalog, Halloween edition, showed up the other day. At least he isn't that happy when the Victoria's Secret catalog shows up. Yet.

Alannah is quaking with anticipation for October 30. Because Mary Ann, director of the Children's Cancer Center, is the bum-diggity, she will be taking us with her for opening night of Phantom of the Opera at the Performing Arts Center. She could have told Alannah she would give her a new convertible when she turns 16 and I am not sure she would have gotten any more enthusiasm than this. She is beside herself. As in 16 year old girl getting tickets to the Beatles in 1964 kind of excited. She can't wait.

Mandy is alllllllll about October. Since last November she has been planning this October. She will start planning next October this November. Why you ask? Her birthday folks. It is her birthday on October 23. There is nothing Mandy loves more than a day that is all about her from beginning to end. She has a wish list made and on the fridge. She has multiple party options in mind and is in the process of narrowing them down. She wants a chocolate cake with chocolate frosting and cheese ravioli's from Carrabba's for dinner. Shocker, huh? She will not be able to be in school on her birthday, because it is the day after chemo, but she has decided that she and I need to plan on getting mani's and pedi's while the other kids are in school that day.

Ronnie loves October cause he gets football and baseball and world series and all that good stuff. Nirvana for him.

It also happens to be our 18th wedding anniversary on Oct 6. Wow, we have been married forever! Good for us, huh? :-)

So, to kick this grand month off in style, and a little early. Mandy and I spent our Sunday afternoon making a haunted house, of the gingerbread variety. Just for fun, a few pictures for your enjoyment.

In case you were wondering, this frosting is FOUL, NASTY, DISGUSTING STUFF. It works GREAT as cement, not so much for the tasting thing. Mandy working hard with her pastry bag.

I love this. It is her "thinking face." The funny thing is Ronnie, Alannah and Zachary all suck in their bottom lip. She is a top lip sucker. Of course, she is the only left handed one in our family. She just likes to do things differently. :-)

She was very intent on following the instructions. She soooo did not get that from me!

And, the finished product.

Really? What else could you have this much fun with and turns out this cute for only $9?

May your October be happy and full of celebrations, laughter and joy!!

Love to all~

Friday, September 26, 2008

Weekend plans... be there or be square.

Sherry Tucker is an amazing woman and just like her son, she is a hero. She lost her son Zach to a brain tumor a little over two years ago. He fought a valiant battle and was healed in heaven.

She has chosen to make sure her son's legacy of heroism lives on. She and her husband Dirk founded the Giving Hope Through Faith Foundation. It is an incredible foundation that sends gift cards once a month for a year to local families going through treatment. The gift cards always seem to come at just the right time. The financial strains on families in treatment is profound. To put money in the hands of the families is a HUGE help and we are so deeply thankful.

But every bit as important as the gift cards are what come with it. She always includes a beautiful and understanding letter from the "been there, done that" perspective. The topics vary from keeping your faith to dealing with your anger and sadness to how a smile can make even the most wretched day better. Every time I get a package from Sherry it is like getting an understanding embrace and the very real knowledge that someone said a prayer for Mandy and for all of us that day.

Sherry has written a book about her families journey and the faith that carried them through even the darkest of times. It is a heartbreaking and uplifting journey demonstrating true faith, true bravery and true love called Unfinished Love: Walking by Faith through Pediatric Cancer

She will be at Books a Million in Westfield Mall in Brandon this Sunday from 2-4 signing books. Go meet her. Buy a book. I know you will be touched by her and the story of her family and their unwavering faith in God and love for each other.

Also, Saturday is a USF hockey game. This is not just your average run-of-the-mill hockey game, folks. They are very kindly and generously donating the proceeds to four Tampa area families. Connor, who has been inpatient for a very long time due to a leukemia relapse. Sophie, who started treatment very recently for leukemia and is the beginning long protocol. Mattie, who is just out of treatment for a brain tumor with a frighteningly high rate of recurrence. And Brooke who has relapsed leukemia and will be going for a cord blood transplant because they were unable to find a bone marrow donor.

Please, come out and show your love for these families. The game is Saturday at the Brandon Ice Sports Forum at 7:30 pm. It is an easy way for you to put financial help into these families hands and you will get to see an awesome hockey game and have a great time to go with it! What more could you ask for?

So, there ya go, ladies and gentlemen, your plans for the weekend...Hockey game on Saturday and book signing on Sunday. See you there!

Love to all~

Wednesday, September 24, 2008

From the mouths of babes

Had you said to me, when I was 14 years old, "Hey, how 'bout you get up in front of a room full of adults, about 150 of them or so, and make a speech. Oh, and? Could you make it about a really personal, painful subject?"

I would have kindly suggested that you step away from the crack pipe.

Alannah was asked to speak last night at the annual Board of Director's meeting for The Children's Cancer Center to give a siblings perspective on what the Center has meant to her. If I had a nickel for every time I have sang the praises of the Center I would never worry about bills again! They have been a life saver, a God send and I can't imagine this time without the amazing staff and volunteers at the Center.

And yet, nothing I have ever said has ever come close to what Alannah said tonight. She was polished and composed and articulate. She was painfully honest and laid her heart and soul out there for a roomful of strangers to see.

The evening opened with Nikki Hawkins, a beautiful 13 year old girl who is a brain tumor survivor singing the Star Spangled Banner. Stunning!!

Then Eddy Kerchione who is home from Irag while his son, Angelo fights leukemia led everyone in the Pledge of Allegiance. He was so awesome and invited all the kids up with him.

Then Bob McNamara, a bereaved father, delivered a beautiful invocation.

Jamie Bridges is a mother of two beautiful little girls. Her youngest, Mattie is fighting a brain tumor. She spoke beautifully about what the Center means to her as a mom. She was honest and heartfelt and did a wonderful job.

Then, it was Alannah's turn. She was really nervous, but you couldn't tell at all to look at her. I am certain I am a bit biased, but I thought she did an amazing job. Though, I can see the nerves in her face here. She kept it together beautifully.

She took the stage, in front of a roomful of about 150 or so adults, 95% of whom she didn't know and had this to say:

"About seven months ago, doctors found a tumor behind my little sister Mandy's eyeball.

There was always a possibility of this happening. She's had neurofibromatosis since she was really little. I can remember being around seven years old and reading through a brochure on the coffee table with that long word on the cover. It meant trips to the hospital for periodic MRIs. It meant bottles of medicine lined up in the cabinet. It meant little brown spots called cafe ole marks on her skin. I never imagined what it would be like if a tumor ever did start growing. So when one did, I tried to pretend that the chemo was just one of those normal things. When something big like that happens, I implode. I'm an alone-crier.

The chemo made Mandy really touchy and angry all the time. She was scared and mad that she had to do this. People were poking her with needles or pumping her full of meds every time she turned around. She was mad that she couldn't go to school on or after chemo days, which meant missing field trips or class parties sometimes.

There are times, I have to admit, when I felt jealous. Not of the chemo, but of all the presents and attention, That's kind of juvenile and I'm embarrassed to admit that's how I felt, but it's true. At the same time it scared me. It felt like a funeral, when everyone brings flowers and casseroles. Everyone feels all sorry for you, when really that's the last thing you want. You just wish everyone would act normal.

But at the Center, everyone did act normal. Nobody was really happy to be there. Not about the reason they were there, anyway. But as long as that reason was there, it was nice to be at a place where everyone had that reason. It was really great to be there because Mandy could just be normal. She didn't have to worry about low blood counts or anything. Normalcy is really important to her. She always keeps her port covered and she didn't want to shave her hair when it started falling out, even though it was getting everywhere and itching her head.

I loved it there too because it made me feel like I was doing something. The emotion I hated more than anger or sadness was the feeling that I couldn't do anything to help. Even if it was only pushing kids on the swings until my arms were ready to drop off, it was better than nothing. That's why I like helping out at the fundraisers too, like the Relay For Life and the Cure Kids Cancer Challenge. I also feel connected while I'm there. There are all these people who know what's it's like, who really get it. Anyone can be sympathetic. Everyone is. But it's nice to have people who really understand.

My mom calls it the monster under the bed. She reminded me of when I was little and I was scared of the closet, because I thought nightmares came out of it. That's what it's like for her. But you have to look under the bed sometimes, because it's just going to fester and grow if you don't. For me, it's like a little box inside my head, filled with every possibility, good and bad. It's the same principle, though: I still have to open the box or it'll swell up until I won't be able to open it anymore. The Center makes sure I don't have to open it alone."

My pride runeth over...

Love to all~


My time is somewhat limited at he moment. I will post more about the proud reason for why that is later tonight. But, I wanted to share with you all a few things.

Mandy's MRI report was waiting for us when we got to clinic this morning. Everything is unchanged. Enhancement is where enhancement was. Size is the same.

This news is fine. Would I have liked for them to say the optic glioma/s is/are shrinking? Well yes. But, I would also like to win the lottery. Really, at this point of this process stable is as good as we can hope for. It is certainly better than progression or increase in size.

There are numerous areas of abnormal signal. These are most likely a product of a common phenomenon with neurofibromatosis. These areas merit watching, but are most likely fine.

Second dose of new chemo was today. It definitely makes her really tired and a wee bit of tummy upset. All in all, she seems to be handling it well all in all. Bloodwork was fine...ANC 1390, Platelets 271, all is good.

So, as good of news with the MRI as was feasible to hope for. That is why she is in treatment for such a long time. These tumors are slow growing, which is good. That also means they are slow to shrink as well.

So, the fight continues. Thanks as always for the thoughts and the prayers. More on our plans for the night later.

Love to all~

Monday, September 22, 2008

Anticipation, it's not just for ketchup anymore

We are home. Mandy did a great job getting her port accessed, the nurses and anesthesiologist were friendly and lovely to her. She was happy and giggling and having fun with them right up until she drifted off to la-la land with help from some Propofol. They handed me my little beeper, ala Carrabba's "Your table is ready now", promised me they would take good care of her and page me the instant she was done and off I went. They were very sweet, VERY good with her and very tolerant of me.

All that being said, somebody, somewhere owes me a dye job on my newly developed grey hairs.

I went and I waited, oh so patiently, for the hour and a half scan to be over. Hour and a half came. Hour and a half went. Truth be told, I start getting antsy at the 89 minute mark. Patience, in these circumstances, not really my strong point. At the hour and 45 minute mark, I was coming out of my skin and was about to go all rabid dog on the door to the MRI suite and claw and chew my way through it. Well, okay, maybe not. But, there was pacing involved.

At one hour and 48 minutes, (yes, I looked. Don't judge me!) my little beeper went off that signaled either my table was ready or my daughter was out in recovery. I walked calmly(sprinted like crazy woman being chased by rabid dogs)back to recovery.

Initial Momma triage reveals color good, breathing good, not yet awake, all good. But wait, the back of her hair is soaked. My first thought is that it is drenched with sweat, which when you have a post anesthesia fever issue like malignant hyperthermia, it tends to set off some alarm bells in my head. Good ole trusty hand to forehead test reveals temp feels fine.

Hmmmmmm. Ok, panic one averted.

I examine further it looks like crap! Blood! It looks like blood! It was rinsed out of her hair, but was obviously blood. I lean her up to look at the back of her head to figure out the source. Cause really? MRI? Not exactly an invasive, bloodletting kind of thing.

Panic two has set in.

Say to nurse, "Why does she have blood in her hair??"

Nurse, "I don't know, let me ask the attending nurse."

Meanwhile, I am looking for signs of trauma. Nothing.

Looking in her ear to see if she had bled from there. Nothing. Alllllllllllll sorts of visions (none of which included sugar plums) dancing in my head.

Nurse comes back and says, "When the nurse injected the contrast, her tube came disconnected from the port access."

Oh. Ok. Disconcerting? Certainly. Scary? Oh yea. But, really? That happens. Pretty easily, in fact. No one's fault. I am completely sure she was fine and in no danger. Still? Wish someone would have saved me the 47 new grey hairs I am now the proud owner of and told me first.

Other than that drama, all went fine. She is feeling good, recovered beautifully and is the proud owner of a new Webkinz for her trouble.

No results for a day or two. Which leaves me waiting patiently.




'Cause I am good like that. Patient. You betcha. Paaaaaaaaaaaaaaaaaatiently waiting.

'Cause that's how I roll.

Thanks as always for checking on her.

Love to all~

Sunday, September 21, 2008

VERY brief update

Our little Willis family infirmary update: the only one left sick at this point is me. Mandy has no fever and mercifully managed to get out of a mandatory hospital stay. Alannah is back up to darn near 100%. Nasty little virus this thing is.

So, this means that Mandy and I will hit the road for St Pete at the crack of dawn tomorrow and get that MRI taken care of. I won't have results for a few days, but will let you all know when I do.

Thanks as always for the prayers and for checking on her.

Love to all~

Friday, September 19, 2008

Doctor-a-thon (updated at bottom)

About four years ago, Mandy was diagnosed with suspected Malignant Hyperthermia She spiked a fever of 106.3(no, those numbers are not transposed, really 106.3) post anesthesia. Malignant Hyperthermia is a usually fatal condition that is a response to inhalant anesthesia. We were lucky. She was brought through the crisis unscathed. Extra precautions have been in place ever since when she is under anesthesia.

So, when she already has a fever(around 101 again this morning), putting her under anesthesia, even when we know that the drug we are using is okay, is a less than stellar idea. So, scans have been postponed until Monday morning. That way we can figure out what is going on with the fever etc in the next couple of days.

We are headed up to clinic this afternoon to do her counts again and see where things stand.

Alannah has been home from school for the last three days with some funk. Probably the same funk that Mandy has. So, she is going to the pediatrician this morning to rule out strep, mono, bubonic plague, whatever.

I have talked to 4 different doctors numerous times so far and it is only 9 am. I gotta say, this Friday is so not feeling all TGIF to me so far.

Will update later. Thanks for checking in on her.

Love to all~

Alannah has neither the flu nor strep nor mono. She has some funky virus that had her sleeping all through the day and running a low grade fever.
Mandy went back up to clinic this afternoon. We redid counts ANC was 1480(down dramatically from last night's 5100), Platelets 150(last night was 137) and got another dose of antibiotics. I am supposed to page the on call oncologist tomorrow if she still has a fever. Her fever has been running between 100-101 all day.

Thursday, September 18, 2008

It's 11:22 pm, Do you know where your oncology patient daughter is?

Well now, she is home. But, we had an unexpected detour to the ER tonight. Mandy has developed a fever, about 102 at one point. So, off we went to the hospital for blood cultures and counts. Counts were fine, so they gave her Tylenol and sent us home.

It used to be a mandatory 72 hour admission for fevers, no matter what the counts were. They have decided that now the rule is that if counts are okay they send you home. The reasoning behind this being that if there is no infection the kids are better off not in the hospital risking exposure to God knows what. It is a hospital after all. It is where sick people go. So, we are back at home now. They did leave her port accessed, which is good. At least they won't have to stick her again tomorrow.

How this will or will not affect tomorrow's scheduled MRI remains to be seen. More on that tomorrow.

We were supposed to go to Orlando this weekend for the American Cancer Society's Families ROCK weekend. Now, not so much. Don't want to risk exposing all the other kids there to whatever funk it is we have in our house right now. And, I don't want to be that far away from our hospital in case we need them.

Laundry list of prayers for you tonight...pray they can still do the scans tomorrow. Pray she kicks this bug quickly and doesn't require a hospital admission. Pray the scans show some good news. Pray her counts can hold strong against whatever funk it is she is fighting. You get the idea. If you want to make up one that I didn't account for, feel free.

Thanks for checking on her.

Love to all~

Wednesday, September 17, 2008

New normal, chapter 472

Little known fact: Brad Pitt is from my hometown.

The way I figure it, that means I should have had first dibs on him above Jennifer Aniston, Gwenyth Paltrow and Angelia Jolie. Sadly, Jen, Gwen and Angie ... all significantly skinnier, cuter and richer than me. I am sure those gorgeous, pouty lips of Angelina's helped her steal Brad away from me. 'Cause if not for her, I soooo would (NOT) have had a chance with him. Alas, it would take an extraordinary amount of botox to make my lips do the Angelina pout thing.

Mandy, on the other hand? Mandy has got skills. We are talking mad skillz, people, in the Angelina lip department. Give that girl a little bit of Carboplatin and voila! No botox needed, thankyouverymuch. The undesirable effect of the Angelina look on her is of course the hives, the face swelling to twice its normal size and the whole not-breathing thing.

And frankly? She is already pretty darn cute and don't need no stinkin' Angelina lips.

So, no more Carboplatin induced Angelina lips for her. She will hopefully forever be among the ranks of the thin-lipped, just like her Momma.

Her first treatment with the new chemo drug, Vinblastine, was today. It took a mere 3 hours start to finish. This is far preferable to the former 9-hour chem-o-thon. She tolerated it well; no hives, no anaphylaxis, none of the whole not-breathing thing, which is even better.

I am, however, surprised at how tired she has been today after treatment. Usually it takes a while longer for the post chemo effects to kick in, but today, she came home and slept from 1-4pm and was back in bed for the night at 6:45 and is sound asleep a mere 15 minutes later. She did not eat anything for dinner at all tonight, not even the brownies that were for dessert. (Though the rest of us thought they were delicious! Thanks, Janet!)She said her stomach would "not be happy" if she put anything in it. So, we shall see how the nausea is or (hopefully) is not with the new med.

I am significantly less than thrilled about having to go to second-line treatment. Generally speaking, second-line is second-line for a reason. Unfortunately, chemo drugs are not like other drugs. For example, your Doctor tells you you need meds to combat high blood pressure and he scrawls out a 'script for Drug A. So, you head to your local pharmacy and get yourself a thirty day supply of Drug A. Well, 15 days in, it has given you a headache, made you constipated, made you start growing feathers, whatever. You can call up your Doc and say, "Yo! Doc, I am sprouting feathers here. Got something that will control my high blood pressure that is a lot less bird-like?" Doc says, "Yup, sure do, and sorry about the feather thing." He can promptly phone you in something to your local pharmacy that works every bit as well as Drug A, without the constipation, headaches, feathers or whatever. No compromise in effectiveness, just a lot less need to stock up on seeds and line your bathroom floor with torn up newspapers.

Chemo drugs, not so much. There are woefully few to chose from for any particular tumor or cancer. Now, that doesn't mean that this particular med and this particular protocol won't work every bit as well as the first one would/should/could have. In fact, in some cases, you can even get better results. It just means that one drug option, in a relatively short list of drug options, is crossed off the list. That part, I am not happy about.

All that said, hopefully, it will work beautifully for her and accomplish everything we need for it to accomplish.

A few concerns with the new protocol:

  • My understanding is it is more myleosuppresive than her old protocol. This means we could be dealing with more frequent issues with her bloodcounts.
  • This medicine can cause cysts in tumors that did not previously have them or exacerbate cysts in tumors that had any cystic component to it at all. Because of this, she will be getting MRI's every two months now instead of every three months.
  • It could fire up the hair loss issue again, but, I am told that it is usually not complete, just thinning. That said, hers is already so thin, I don't know how much thinner we can get, before it isn't there.

    All or none of the above could happen. Or not. Every person responds differently. So, only time will tell how she will tolerate it.

    There are also new ground rules with the new protocol. Her ANC (the blood count that indicates the strength of her immune system) has to be above 1000 or they will hold chemo. Additionally, there are blood chemistry issues (liver, kidney function) that need to be in line or they will hold chemo. Chemo is now every week, with no breaks like on the old plan. And, like I said, MRI's every two months instead of every three.

    Speaking of MRI's, normally, I don't say what days they are on, so people don't worry. But, after some thought, I thought I would let you all know that scans are on this Friday. It should be an all-day affair, due to Mandy's issue with anesthesia. We won't have results until next week, which makes me crazy. Patience is waiting for scan results ... not my strong point. (Shocker, I know.) If you could send up a prayer or twenty for good scans, we would sure appreciate it.

    Her homebound teacher comes for the first time tomorrow. The plan is to have her come every Thursday and perhaps some other days as needed. She seems very sweet and I am sure Mandy will like her.

    That's the news from here, folks. Thanks as always for checking on her and for all of you who called, e-mailed and texted your good wishes today.

    Love to all~
  • Monday, September 15, 2008

    101 Reasons/Excuses why I have been MIA

    I haven't been posting much lately. No need to panic. All is fine, so I thought I would offer up my little laundry list of excuses, um, I mean reasons why I have been slacking. So, here goes...

    My Grandma is one of the best human beings I know. Truly. She is the one person in the world who honestly believes I can do no wrong. She is oh-so-sadly wrong in this belief, but, everyone needs someone who believes in them the way she believes in me. My grandma has been here visiting for the last week or so and it has been lovely. She has stocked my freezer with enough Made-With-Love comfort-Grandma-food to feed a small nation. Anyone want to come over for dinner and share some of the very best beef brisket on the planet?! Thanks, Grandma for ALWAYS having my back. I love you to the ends of the earth and am thankful for you every single day of my life.

    The Cure Kids Cancer Challenge was on Saturday. It was a day fraught with a million different emotions. It is amazing that one singular event can be heartbreaking and uplifting all at the same time. So many moms and dads and sibling there missing a part of their family, with a heartbreak so deep it can never be healed. So many kids fighting with everything they have and still smiling and laughing and finding joy in every moment.

    It was an amazing event. Thanks to all of you who donated. Thanks to all of you who came out and walked. Zachary and Mandy's school had two teams worth of teacher's who came out. What an amazing thing to see all those faces out there supporting these kids.

    Ok, let's be honest ... am I nervous about the new protocol? Yup. Have I been in a bit of a funk about it? Uh huh. Am I scared about the upcoming scans? You betcha. Am I hopeful and believing with all my might that everything will be okay? Yes, I am. Have I not been posting partially due to my aforementioned funk? Probably.

    Moving on. Actual conversations with actual Willis children:

    Zachary has a cold. The whining is enough to peel the paint. The boy child, though h so cute and crazy goodhearted and sweet, is a wimp. However, he is also prone to strep. So when the whining takes the track of, "My throat hurts." it generally buys him an extra long Qtip down the throat in the name of a strep test. So today at the Doctor's office when questioned as to the source of his illness. He says, "I think I am really sick because normally when I don't feel good my nose is hot. Today it is cold and that just can't be good." So apparently, my son, is a dog. Go figure.

    Mandy: "If I have a cookie and a chocolate shake for lunch does that mean I can still have Cool Ranch Doritos for dessert?" Ahhh, the force is strong with that one, my friends.

    Alannah, in the car, after her church group meeting tonight, was obviously worried. When she worries, she's usually worried about her little sister. She opened the door a crack, and because that is just the kind of mom I am, I kicked that sucker down and then strolled on through.

    We talked about some of her worries and some of her anger about Mandy not being able do some of the things she wants to do and completely unprompted, she says, "Momma, I want you to know how much I admire you for how hard you work to make sure Zachary and I know that we are still just as important. I know sometimes her needs take priority in the moment, but you make sure we know that we are just as important. Thank you."

    Speechless. I was speechless.

    Love to all~

    Wednesday, September 10, 2008

    A different new plan

    When Mandy was about 4 I used to wear a pair of scrubs for jammies frequently. I had borrowed(stolen) them from her hospital at the time. She had vomited all over my clothes. plus, if you have paid a hospital $23.95 per Tylenol dose I figure they owe me comfy sleepwear, plus, the nurse who gave them to me said I could keep them. This particular pair of scrubs has MD emblazoned across the leg. Mandy, after studying the initials on my leg asked, "Momma...MD? It means Mommy Doctor, right?" Sadly, no, baby. I am not actually a doctor and I don't play one on TV.

    So, my whole, let's call CHOP and ask if we can borrow their protocol for Carboplatin desensitazation thing? Yea, not so much what is going to happen.

    We had Mandy's appointment with her neuro-oncologist today. She, in no uncertain terms, does not want to try to desensitize her. She feels it is just too risky and that we are playing with things like hypoxic brain injury and full blown anaphylaxis. Given that neither of those really sound like a fun way to spend an afternoon, Mandy will be switching protocols altogether.

    She has now stopped the Vincristine/Carboplatin and will be starting a new chemo drug called Vinblastine in their place. She will start back on chemo next week. Her MRI has been moved up to get a new baseline for the new protocol. This drug will be given once a week, every week with no breaks for at least the next year.

    Bloodcounts were fine all in all today. Some funky things with some atypical Lymphocytes, but likely just a rebound thing from 6 months of chemo.

    That's all and I am too tired to be more eloquent. So, I am of to bed.

    Love to all~

    So, there ya have it. Another new plan and scans around the corner.

    Tuesday, September 9, 2008

    A worthy cause -- and it won't cost you a cent

    It's time to find a better way to treat pediatric brain cancers. She has an idea. Read on and click to vote for this project.

    Wednesday, September 3, 2008

    New plan. Well, sort of. Maybe.

    I know this will come to you as a huge shock. Sleep, has not been my friend the past few days(well, okay weeks and months, but let's not split hairs, people). I have been um, shall we say, rather apprehensive(just a little), about reintroducing the Carboplatin to her system. 'Cause, frankly the whole possible her not breathing thing...not so much working for me

    So, I came home and had myself a rendezvous with my very fickle friend, Dr Google. Google and I sat down and read medical journal after medical journal after paper after paper.Through all of this I have found out that CHOP(Children's Hospital of Philadelphia) has a protocol in place to get kids through a Carboplatin allergy. They have a HUGE success rate with this and get the vast majority of the kids who develop an allergy, some with reactions even worse than Mandy's, through the treatment plan on this drug.

    Now, all of this being said, I am not a doctor and this may not work for her and may not be a viable option. But, it is certainly an option worth exploring and the doctors agree with that.

    She was supposed to have the Carboplatin today and it was decided that the risks were just too high. They had an anesthesiologist on stand by in case they needed to intubate. And frankly, given the odds, nobody thought it was going to work. So, we have a new plan. Well, the beginnings of one anyway. It goes a little something like this.

    I was worried about missing two full doses of chemo, plus two weeks off fo rcount recovery. So, in order to avoid that, this week was now considered her first week of rest. Next week will be the second week and then start back the following week. In the meantime, they are going to explore the option of CHOP's protocol. And by the time comes to start the next cycle there should be a better plan in place. Please, keep your fingers crossed and send up some prayers that this is a viable solution to keep her on her current protocol.

    We both came home and took naps this afternoon, which we both needed. So, for today, all is okay and hopefully moving in the right direction. I will know more next week after we see her neuro-oncologist.

    Thanks for all the prayers and love today!

    Love to all~