Monday, November 30, 2009
Platelets
Evy's platelets were low when we got to Dr. Horn's office today so she had a transfusion. Platelets help your blood clot. It is natural that they would be low after the long stretch of chemo she endured last week. We were told they were low at 10:30 am and that the 2 hour transfusion would commence at 1:30. A long day with two little monkeys. But now her platelets will be at a nice level for tomorrow's chemo put into her spine as well as a chemo "push" into her central line.
Sunday, November 29, 2009
Sunday night
Heading up to Dr. Horn's office tomorrow, which is about a mile or two from Inova Fairfax Hospital. (Dr. Horn is our Oncologist.) We will be making this trek quite often. (For those of you who aren't local, this is quite the drive! 80 minutes with no traffic.) Tomorrow they will simply do a blood draw from her central line and check her platelets. If the levels are not as desired, she will receive platelets through an IV.
On Tuesday, Brian will take Evelyn up for her spinal tap/lumbar puncture. Some chemo is given through her central line (she has a tube coming out of her chest that has two access points- a direct line to her heart- similar to this) and some of it is put directly into her spinal cord. Hence, the spinal tap on Tuesday. More chemo. Brian will be taking her since she can't eat prior to a spinal tap anyway (anesthesia), and when she sees me, she wants to eat. I will stay home with Stelly-belly.
Being home has been good, even though we had a couple of issues with our dispatch from the hospital. Including the fact that the nurses didn't tell us that the medication I have to give Evy by injection each day can't be gotten from just any old pharmacy. Apparently it is something that should have been told to us, and without posting a laundry list o' complaints I will just say that this is becoming a trend. Brian and I are going to have to be proactive to ensure that all information is given to us readily.
Evy just started nibbling at solids again this late afternoon, and she hasn't thrown up since last night.
On Tuesday, Brian will take Evelyn up for her spinal tap/lumbar puncture. Some chemo is given through her central line (she has a tube coming out of her chest that has two access points- a direct line to her heart- similar to this) and some of it is put directly into her spinal cord. Hence, the spinal tap on Tuesday. More chemo. Brian will be taking her since she can't eat prior to a spinal tap anyway (anesthesia), and when she sees me, she wants to eat. I will stay home with Stelly-belly.
Being home has been good, even though we had a couple of issues with our dispatch from the hospital. Including the fact that the nurses didn't tell us that the medication I have to give Evy by injection each day can't be gotten from just any old pharmacy. Apparently it is something that should have been told to us, and without posting a laundry list o' complaints I will just say that this is becoming a trend. Brian and I are going to have to be proactive to ensure that all information is given to us readily.
Evy just started nibbling at solids again this late afternoon, and she hasn't thrown up since last night.
Friday, November 27, 2009
Dr. Myseros
Scroll down this link to read about the amazing doctor who performed the full resection of Evy's brain tumor... it was wrapped around arteries and he removed it all. When I picture him in my head he is wearing a Superman outfit.
Thursday, November 26, 2009
Thanksgiving
Evy is getting far more confident with practicing her walking skills. It helps to have an hour in the playroom for inspiration as well as having one-on-one mommy time. She took about ten baby steps in a row on her own a few times. Her smile of satisfaction is adorable. Tonight I opened the door to our room and pulled her IV Pole behind her and told her she was free to wander. She was so excited to see what was out there. If you know her well you can imagine the cute little faces she made.
Today was hard-- being away from Stella and Brian on Thanksgiving, and being on day five away from home. (Stella is not allowed to visit Evy in the hospital.) When Evy was sleeping I googled ATRT. Never a good idea. It's hard not to, but I shouldn't so that I can maintain my positive "let's beat this" attitude and make it through 53 weeks of treatment. Shame on me, but as I type this I have more google searches open in other tabs. I keep thinking that if I google it one more time I will find the webpage that tells me that I will always have my twin girls together. I want to find a YouTube clip of Penn and Teller with Penn yelling at the camera, "That's BS! The survival rate isn't that low! This will be easy!" Fantasies, I know.
Can't wait to see Stella and Brian on Saturday! Being home will be good for us and we will gear up for Evy's next spinal tap on Monday or Tuesday.
PS If you know anyone in the area looking to adopt an adorable black lab, let us know. We just can't give Misha the home he deserves at this time. A bigger post on this with pics is soon to come.
Today was hard-- being away from Stella and Brian on Thanksgiving, and being on day five away from home. (Stella is not allowed to visit Evy in the hospital.) When Evy was sleeping I googled ATRT. Never a good idea. It's hard not to, but I shouldn't so that I can maintain my positive "let's beat this" attitude and make it through 53 weeks of treatment. Shame on me, but as I type this I have more google searches open in other tabs. I keep thinking that if I google it one more time I will find the webpage that tells me that I will always have my twin girls together. I want to find a YouTube clip of Penn and Teller with Penn yelling at the camera, "That's BS! The survival rate isn't that low! This will be easy!" Fantasies, I know.
Can't wait to see Stella and Brian on Saturday! Being home will be good for us and we will gear up for Evy's next spinal tap on Monday or Tuesday.
PS If you know anyone in the area looking to adopt an adorable black lab, let us know. We just can't give Misha the home he deserves at this time. A bigger post on this with pics is soon to come.
Wednesday, November 25, 2009
Good day
After Evy woke a couple of times in the night to throw up, I was worried that today would be bad. She only threw up once midday. Her diet consisted of about 3 Cheerios. And nursing, of course, which is very helpful for calories, nutrients, and immunity boosting. Thankfully, she will nurse when she will not eat solids because of the chemo.
We booked the playroom for 6 pm and Evy squealed with delight when I told her we were going there, even though she had never been there before. When we got there she walked quite a bit with my assistance. It is like a cruel joke to try to teach a kid how to walk again with three tubes of medicine coming out of her chest connected to an IV pole. It took quite a bit of maneuvering for me to make sure they did not tangle her up. But as Brian puts it, how many people get to say they witnessed their kid's first steps twice?
Entertaining Evy is a challenge but I am pretty good at not letting my own boredom show. She still thinks this is all pretty normal and fun, and that is good for her psyche. We have raised Stella and Evy TV-free... I did get a couple of dvds from some friends who got us a Netflix account as a gift for the hospital. She wasn't so into it, and I am actually glad. We have been google image searching all sorts of things and that keeps her happy. Her favorite pictures of the day: caterpillar, cat, butterfly, and highland cow. Our stay here at the hospital has been extended to Saturday. They need to observe and hydrate her a bit once her chemo ends at 6 pm on Friday.
We booked the playroom for 6 pm and Evy squealed with delight when I told her we were going there, even though she had never been there before. When we got there she walked quite a bit with my assistance. It is like a cruel joke to try to teach a kid how to walk again with three tubes of medicine coming out of her chest connected to an IV pole. It took quite a bit of maneuvering for me to make sure they did not tangle her up. But as Brian puts it, how many people get to say they witnessed their kid's first steps twice?
Entertaining Evy is a challenge but I am pretty good at not letting my own boredom show. She still thinks this is all pretty normal and fun, and that is good for her psyche. We have raised Stella and Evy TV-free... I did get a couple of dvds from some friends who got us a Netflix account as a gift for the hospital. She wasn't so into it, and I am actually glad. We have been google image searching all sorts of things and that keeps her happy. Her favorite pictures of the day: caterpillar, cat, butterfly, and highland cow. Our stay here at the hospital has been extended to Saturday. They need to observe and hydrate her a bit once her chemo ends at 6 pm on Friday.
Tuesday, November 24, 2009
2 Days In
Evy has been a a real trouper. She had two different chemo treatments in the last day and did not act any differently than usual, except for a lower appetite for solids. The doctor on staff today was pretty surprised... he reminded me that her chemo treatment was "intense" and raised his eyebrow.
Tonight they started a 24 hour one at 6 and she promptly threw up at 6:15. I put her to sleep for the night 20 minutes ago and of course the nurse is administering oral meds to her now. Hospital life! (I just got a mental image of me shouting that all dressed up like the city woman in the Green Acres theme song. Silly, I know.)
Tonight they started a 24 hour one at 6 and she promptly threw up at 6:15. I put her to sleep for the night 20 minutes ago and of course the nurse is administering oral meds to her now. Hospital life! (I just got a mental image of me shouting that all dressed up like the city woman in the Green Acres theme song. Silly, I know.)
Monday, November 23, 2009
Evy's Chemotherapy: Week One of Fifty Three
First things first: We found a place to stay while getting treatment in Boston! Thank you for all of the offers and outreach you have done.
Now on with update:
Brian came home from work last week with the fax of Evy's roadmap from our Oncologist. He had had a chance to look at it already so we sat down on the couch to review it once the girls were tucked away in bed for the night. It is a thick packet of pages outlining each day of Evy's treatment... what is planned to be done when... for 53 weeks. Brian walked me through week one, then week two... and then as he exuberantly flipped to week three, I asked if we could just relax and watch our DVR'd Project Runways. 53 weeks seemed so overwhelming at that moment! (And now.) 53 weeks of chemo and hospital stays, with a bunch of radiation part way through, a plethora of doctor's visits all 80 minutes from our home in DC traffic... mama needed a drink!
But what it really is is that we need to take this in baby Evy steps... bit by bit, inch by inch, we'll make it.
Last night Evy and I packed up the car and went to RMH for the night. We had an early appointment for this morning and it would be impossible to make it on time with all of the rush hour traffic if we had waited to leave til this morning. It was so sad to leave. Last week was such a pleasure. Stella, Evy and I had a typical week at home... We just had fun-- laughing, eating, reading, wandering. When others upated their Facebook statuses as "TGIF!" I felt the opposite. I cherished that week! And when it was ending, my nervousness about chemo crept in.
Uncharted territory, chemo is. The ups and downs I anticipate in the next 53 weeks strike fear in my heart. All of this was a bitter pill to swallow, but it is also becoming the new normal. Yet certain things are so shocking. Like chemo. We stretch our dollars to feed the girls as much organic food as we can afford to avoid putting pesticides into their little bodies. So when the nurse comes in and tells me that when I change Evy's diaper when she is getting chemo I should wear gloves because it will be toxic pee? Well, that makes me shiver. We are pumping her body with chemicals to kill stuff. Good and bad alike will be killed off. Scary.
This morning Evy got another spinal tap and had chemo put into her spine during that procedure. She is about to start an 8 hour chemo session, followed by a few more long ones. We will be here in the hospital until Friday. Hopefully it will all go well with minimal side effects (fingers crossed!)
I have never been away from Stella like this. We can't keep her at RMH anymore because we have to keep her away from sick people, and during flu season, that eliminates a whole lot of places. Evy's immune system is about to be destroyed. An illness could seriously compromise her health. I am starting to flash back to the preemie days... when you get the anxiety about "will they get sick?" and you feel so self- conscious about having to tell people to wash their hands , peppering them with questions about whether they have been exposed to anyone who was ill, and the sadness over not being able to have our kids play with other kids.... it is not a good feeling. Well, we did have those six months between the recovery from prematurity and now cancer to frolic and be free. And, boy, did we! And when all is said and done, frolic again we will.
Now on with update:
Brian came home from work last week with the fax of Evy's roadmap from our Oncologist. He had had a chance to look at it already so we sat down on the couch to review it once the girls were tucked away in bed for the night. It is a thick packet of pages outlining each day of Evy's treatment... what is planned to be done when... for 53 weeks. Brian walked me through week one, then week two... and then as he exuberantly flipped to week three, I asked if we could just relax and watch our DVR'd Project Runways. 53 weeks seemed so overwhelming at that moment! (And now.) 53 weeks of chemo and hospital stays, with a bunch of radiation part way through, a plethora of doctor's visits all 80 minutes from our home in DC traffic... mama needed a drink!
But what it really is is that we need to take this in baby Evy steps... bit by bit, inch by inch, we'll make it.
Last night Evy and I packed up the car and went to RMH for the night. We had an early appointment for this morning and it would be impossible to make it on time with all of the rush hour traffic if we had waited to leave til this morning. It was so sad to leave. Last week was such a pleasure. Stella, Evy and I had a typical week at home... We just had fun-- laughing, eating, reading, wandering. When others upated their Facebook statuses as "TGIF!" I felt the opposite. I cherished that week! And when it was ending, my nervousness about chemo crept in.
Uncharted territory, chemo is. The ups and downs I anticipate in the next 53 weeks strike fear in my heart. All of this was a bitter pill to swallow, but it is also becoming the new normal. Yet certain things are so shocking. Like chemo. We stretch our dollars to feed the girls as much organic food as we can afford to avoid putting pesticides into their little bodies. So when the nurse comes in and tells me that when I change Evy's diaper when she is getting chemo I should wear gloves because it will be toxic pee? Well, that makes me shiver. We are pumping her body with chemicals to kill stuff. Good and bad alike will be killed off. Scary.
This morning Evy got another spinal tap and had chemo put into her spine during that procedure. She is about to start an 8 hour chemo session, followed by a few more long ones. We will be here in the hospital until Friday. Hopefully it will all go well with minimal side effects (fingers crossed!)
I have never been away from Stella like this. We can't keep her at RMH anymore because we have to keep her away from sick people, and during flu season, that eliminates a whole lot of places. Evy's immune system is about to be destroyed. An illness could seriously compromise her health. I am starting to flash back to the preemie days... when you get the anxiety about "will they get sick?" and you feel so self- conscious about having to tell people to wash their hands , peppering them with questions about whether they have been exposed to anyone who was ill, and the sadness over not being able to have our kids play with other kids.... it is not a good feeling. Well, we did have those six months between the recovery from prematurity and now cancer to frolic and be free. And, boy, did we! And when all is said and done, frolic again we will.
Wednesday, November 18, 2009
Great news!
The spinal tap performed on Monday shows that Evy's spinal cord has no floating cancer cells. PHEW!
What a relief.
Also, there are so many of you sending me well wishes and extending thoughtful gestures and it is really warming my heart. Thank you! I just want to make sure you all know how to pronounce "Evy" when you are yelling off of rooftops that she had best get well: Evy rhymes with heavy.
(: (: (: (:
Yes, that was 4 emoticons. I am very happy.
What a relief.
Also, there are so many of you sending me well wishes and extending thoughtful gestures and it is really warming my heart. Thank you! I just want to make sure you all know how to pronounce "Evy" when you are yelling off of rooftops that she had best get well: Evy rhymes with heavy.
(: (: (: (:
Yes, that was 4 emoticons. I am very happy.
Tuesday, November 17, 2009
Two ways you may be able to help
Through Brian's work with the federal government, there is a way that other employees of federal agencies can donate time through the VLTP (Voluntary Leave Transfer Program.) This is a donation of vacation time. Our plan for saving Evy is a one year protocol which will commence next week: 6 weeks chemo, then 6 weeks proton therapy (new-fangled radiation) in Boston, followed by 40 more weeks of chemo. As much time that Brian can spend with the family, the better. This is the time of year when you must "use or lose" your excess vacation time, so hopefully that will work in our favor. Email me at jekyomail at yahoo.com if you think you can donate time and I will give you all necessary information.
We will be in Boston for 6 weeks around January. If you know of anyone who has a pied a terre or what-have-you up there and would be willing to have a family live in their home for 6 weeks, let us know. We have to keep both Evy and Stella quarantined from other children and anyone who may be sick (yes, just what we did for the first 16 months of their lives after they were born prematurely. FLASHBACK!) So abodes with children will not work. Email me if you think you can help.
Thanks!
We will be in Boston for 6 weeks around January. If you know of anyone who has a pied a terre or what-have-you up there and would be willing to have a family live in their home for 6 weeks, let us know. We have to keep both Evy and Stella quarantined from other children and anyone who may be sick (yes, just what we did for the first 16 months of their lives after they were born prematurely. FLASHBACK!) So abodes with children will not work. Email me if you think you can help.
Thanks!
Monday, November 16, 2009
Monday
Evy's surgery to implant her central line for chemo and spinal tap were scheduled for 11 am... they happened at 5! Poor Evy didn't eat all day and hung out with dada in a waiting room all day while Stella and mama hung out at RMH and had a ladies lunch at Chipotle. But don't you know we had her giggling in no time when she arrived back "home". The lovely woman in charge of RMH saw that we were all exhausted and insisted we all get into the car and go home--- leaving the cleaning up to her volunteers. So here we are at home looking forward to "ni-ni" in our own beds.
Sunday, November 15, 2009
Before and After Photos of Evy's brain surgery
Just two weeks ago we were just another normal family. Our biggest problems were deciding on paint colors for our new house and that we hated the Oddball brew in our Magic Hat 12 pack. Life with twins at times seemed stressful. You never seem to know just how lucky you are until disaster strikes. Here are pics of the girls on Halloween, just two days before Evy's brain tumor was discovered. Evy is the bee and Stella is the ladybug... cute twin gal pals are Belle and Izzy.
Munching
Mama and girls
Evy and StellaJust two weeks: pictures after Evy's brain surgery
Stella and Evy yesterday(photos out of order- no time to fiddle!)
Stella tried to kiss Evy and pouted when she was DENIED! So cute.
Stella tried to kiss Evy and pouted when she was DENIED! So cute.
Seeing each other for the first time in over a week, post surgery
Reunion again
Evy ready to leave hospital (avoiding H1N1)
Evy a few days post-op, looking great
Friday, November 13, 2009
Counting our blessings
At home, being a family--- this is what life is about. The every day laundry list of things to be done are always accomplished with my little chimps underfoot. The only difference today is that Evy isn't walking, so I am carrying her around or propping her up somewhere while I do them! And yes, of course, we have this scary future that is looming in the forefront of our minds. Or at least Mama and Dada's minds... one good thing out of this all is that Evy and Stella don't know the severity of our situation. And I hope that is what helps us pull through most of all.
We're making the last minute decisions- which hospital should be in charge of Evy's care, etc. Because AT/RT is such a beast and has been mostly insurmountable in the past, there is no one protocol every oncologist follows. They're always trying new things and trying to get a handle on it.
Stella and Evy's reunion was sweet. We arrived at the RMH around 7pm Wednesday night to see Stella peeking out the window from Grammy Pammy's arms. They smiled as they saw each other and Stella pointed at Evy's black eye in confusion.
Evy is trying to use her arm and leg more and more. This is promising. She gets so frustrated watching Stella run around like normal. Today she even slid herself off of the couch to try to walk. Yesterday she couldn't sit up on her own. Today she can. Let's hope this kind of strength just continues and continues.
Stella was getting upset that Evy got to take so many different types of medicine. So now she has her own syringe that we fill with water for her to take her "medicine", too. Evy has her medicine for her boo-boo, and now Stella does, too! Brilliant.
xoxo Jill
We're making the last minute decisions- which hospital should be in charge of Evy's care, etc. Because AT/RT is such a beast and has been mostly insurmountable in the past, there is no one protocol every oncologist follows. They're always trying new things and trying to get a handle on it.
Stella and Evy's reunion was sweet. We arrived at the RMH around 7pm Wednesday night to see Stella peeking out the window from Grammy Pammy's arms. They smiled as they saw each other and Stella pointed at Evy's black eye in confusion.
Evy is trying to use her arm and leg more and more. This is promising. She gets so frustrated watching Stella run around like normal. Today she even slid herself off of the couch to try to walk. Yesterday she couldn't sit up on her own. Today she can. Let's hope this kind of strength just continues and continues.
Stella was getting upset that Evy got to take so many different types of medicine. So now she has her own syringe that we fill with water for her to take her "medicine", too. Evy has her medicine for her boo-boo, and now Stella does, too! Brilliant.
xoxo Jill
Wednesday, November 11, 2009
Waiting to go home
Sitting around with Evy in the hospital room, waiting for word it's ok that we head home until Monday when we will come back for surgery to implant chemo port and a spinal tap to look for floating tumors in her spinal cord. We can't leave until they test her levels of her seizure meds at 4 and proclaim that they are sufficient for discharge.
Then we will go home. Stella and Evy will be reunited for a short time... Stella has been so sweetly confused by all of this. The Northern VA Ronald McDonald House has been a refuge for us during this time. Stella has been able to see me about once a day, and she still gets to sleep next to dada and also enjoys playing with Grammy Pammy all day long. It will be interesting to see how Stell reacts to the healing scar on Evy's head... to Evy's lack of mobility.. but I think this will be so good for all of us. I did go ahead and find a place for our dog Misha through this (thanks to Jen and the army of FAHA volunteers at the ready!) On the one hand I know pets help lift spirits, but I am also afraid of our big boy knocking Evy over, as he has demonstrated in the past. Also, the idea of dealing with an energetic dog on top of everything is just too much. I hope the girls aren't too sad when we go home and "Mimi" isn't there.
So we'll go home. And if you know me at all you know I will be psychotically creating uber healthy vegan meals and my Vita Mix will be a-whirring with green smoothies. Gotta get this girl as strong as possible for our first round of chemo.
As for knowing the exact schedule and types of treatments, this is still up in the air... the Brain Tumor Consortium, which includes some of our doctors, will be working hard to come up with a treatment plan that is tailored to the most recent research and findings about fighting AT/RT. So for now all we know is that we're going home, getting some R & R and some bonding time, and then heading back up here to Fairfax Inova Hospital on Monday.
xoxo Jill
Then we will go home. Stella and Evy will be reunited for a short time... Stella has been so sweetly confused by all of this. The Northern VA Ronald McDonald House has been a refuge for us during this time. Stella has been able to see me about once a day, and she still gets to sleep next to dada and also enjoys playing with Grammy Pammy all day long. It will be interesting to see how Stell reacts to the healing scar on Evy's head... to Evy's lack of mobility.. but I think this will be so good for all of us. I did go ahead and find a place for our dog Misha through this (thanks to Jen and the army of FAHA volunteers at the ready!) On the one hand I know pets help lift spirits, but I am also afraid of our big boy knocking Evy over, as he has demonstrated in the past. Also, the idea of dealing with an energetic dog on top of everything is just too much. I hope the girls aren't too sad when we go home and "Mimi" isn't there.
So we'll go home. And if you know me at all you know I will be psychotically creating uber healthy vegan meals and my Vita Mix will be a-whirring with green smoothies. Gotta get this girl as strong as possible for our first round of chemo.
As for knowing the exact schedule and types of treatments, this is still up in the air... the Brain Tumor Consortium, which includes some of our doctors, will be working hard to come up with a treatment plan that is tailored to the most recent research and findings about fighting AT/RT. So for now all we know is that we're going home, getting some R & R and some bonding time, and then heading back up here to Fairfax Inova Hospital on Monday.
xoxo Jill
Tuesday, November 10, 2009
Diagnosis
The diagnosis is in.. Evy has a rare type of brain tumor called an AT/RT. I can tell you that this is the really evil cancer we were fearing. The survival rate is very low, but you know what? If anyone can beat this it is my dear gal. She has the power of a family who adores her and will do anything for her. She has a constant stream of cancer-fighting breastmilk at the ready... we will not give up hope that our little twin girls will grow up together happily... even if it means she endures a beyond difficult fight.
Brian and I find ourselves extremely fearful... since finding out about this just a few hours ago I have risen from the depths of despair to the height of hope. Damnit, we will fight this. We will fight hard.
Brian and I find ourselves extremely fearful... since finding out about this just a few hours ago I have risen from the depths of despair to the height of hope. Damnit, we will fight this. We will fight hard.
The waiting game
Waiting for a diagnosis is a PITA! Yesterday it was today, today it may be today or tomorrow. These people are lucky that I am a patient person... I mean, I taught 8th grade! LOL. But we are hoping the time passes just a teensy bit faster until the pathology results are in.
Things to be grateful for today:
-Evy's eye is open!
-The swelling is down
-She is smiling and shooing flies
-She loves looking at and smelling the pretty pink flowers dada bought her
-Stella is waiting for me at Ronald McDonald House and I will get some love from her soon
-The outpouring of love, support, and offers of help from friends, acquaintances and perfect strangers
-The fact that I am still nursing- it is so comforting to both Stella and Evy at this time and will be a powerful punch nutrition-wise to help Evy fight!
xoxo, Jill
Things to be grateful for today:
-Evy's eye is open!
-The swelling is down
-She is smiling and shooing flies
-She loves looking at and smelling the pretty pink flowers dada bought her
-Stella is waiting for me at Ronald McDonald House and I will get some love from her soon
-The outpouring of love, support, and offers of help from friends, acquaintances and perfect strangers
-The fact that I am still nursing- it is so comforting to both Stella and Evy at this time and will be a powerful punch nutrition-wise to help Evy fight!
xoxo, Jill
Monday, November 9, 2009
How it all began
Welcome to Evy Beats Cancer, the blog I am creating to convey news of my beautiful daughter Evelyn's journey through cancer.
How did this all happen, you ask... she is only 22 months old... it is frankly unbelievable what this baby is enduring. Well, I'll tell you.
It all began a couple of weeks ago when Evelyn fell down the steps in our home. She landed on her arm and then stopped using it. We assumed she had hurt it from the fall and took her to the ER. There they assured us that it was a small fracture, put a splint on her, and sent us home with a referral to an Orthopedist. In the meantime I noticed that Evy had a slight limp in her right leg.. the same side as her hurt arm. I remember laughing with a friend and saying that my poor baby was falling apart.
We went to the Orthopedist a few days later and he said it was not a fracture. He could not explain why she wasn't using her fingers at all, and didn't question it. Looking back there were signs that this was neurological and not simply a physical injury from a fall. I even asked him about her ankle and he said that toddlers can't sprain their ankles... and still he didn't question what was wrong. Instead, he sent us home and said that if she did not use her arm in three weeks to come back.
A few days passed.. we had a Halloween party and the normally socialite-esque Evelyn wanted a nap right after her friends arrived. She went right down and slept through much of the Halloween fun. Warning bells rang in our minds. This was not our Evy! She was still not using her arm. No wiggling of fingers. Just a dangling limb. Scary stuff. So we went to the pediatrician. We mentioned the leg, showed her the arm, and she seemed perplexed. She ordered another x-ray and suggested we see a neurologist. I tried to make an appt. with the neurologist the next day and between two offices I was only able to make an appointment for February and then December. Increasingly frustrated, we decided to do more the following day since it was five o'clock.
That night, Brian took off Evy's clothes and diaper in preparation for pajama time and he called me in... Evy's leg was a backwards C- her knee was about 3 inches behind where it should have been. Clearly she had lost most use of it. Saying that I flipped out is an understatement, because this confirmed all of my previous intuition... that she had no fracture but that something else was wrong. Unfortunately we had to go to sleep that night with this big question mark looming while our sweet angel slept.
The next day we called the pediatrician and they soon told us to head to an ER for a full neurological exam. When we got there they sent me home with Stella to keep her from H1N1, which was rampant. I left just as she had been taken for her CT scan. I drove over an hour home with Stella and killed some time doing some work in the yard to quell my nerves. The phone rang and Brian broke the news- Evy had a brain tumor. I threw clothes into a suitcase and left with sweet Stella immediately, my heart breaking into a million pieces all the while.
Evy's brain tumor was on the left side, therefore affecting the right side of her body. It was at the top of her skull and the neurosurgeon has referred to it as "gigantic". (The size of a mango in diameter.) Parts of it were dangerously close to arteries. They suspected it had been growing since birth. (ETA: We now know that it only took 2-3 mos to grow.) Surgery was scheduled for Friday morning and there was still hope that it was a benign tumor. The next day she had an MRI, which saddened the doctors because it showed that it was a much nastier tumor than first expected and was most surely malignant. On Thursday Evy's condition worsened. I was certain we were going to lose her soon. The oncologist told our neurosurgeon that emergency surgery must be performed. As with every other procedure, I held her in my arms in her crib as they wheeled us down to the OR. Through all of this I have kept my mood as light and positive as possible for Evy's sake as well as for my own. As we were wheeled downstairs I discovered that the nurse with us went to Oneonta. We laughed and joked about our time there together, and I even cackled. I think that Evy didn't even know that something awful was happening, just that mama was chatting with a girlfriend and laughing and having fun. I laid her on the operating table and talked to her as they put her under. She only cried for about 10 seconds and then was out.
Seven long hours passed. Seven hours! We stayed as upbeat as possible waiting for news. We saw her at 1:30 am. She had a white bandage on her head that made her look like a little Russian onion-domed cathedral. The neurosurgeon said it went well but that we would not be sure if she was okay until when she woke up.
They kept her sedated through the next morning when she underwent a post-op MRI of brain and spine. The news which resulted from this MRI was that he had gotten every single part of the tumor out, even those around arteries. She had suffered from a stroke at one point, either before or after surgery (I suspect it's what caused the fall.) Her spinal cord looked clear of tumors, but was not 100% because of the amount of blood in the cord from surgery that obscured the image.
When Evy woke up she was speaking within an hour. This delighted our neurosurgeon because he had cut near her speech center and he was concerned about it. Evy was saying "what's that?" and pointing as she often does, and winning the nurses hearts by giving them little waves goodbye. Her left eye was swollen shut and she had a huge incision in the shape of a C on her head. The side of her head was very swollen and bruised. SShe kicks her leg a tiny bit and still does not use her arm. We hope that this is not permanant.
We know Evy has cancer... but we still don't know the pathology of the tumor. We don't know if it's just the "evil cancer", as I call it, or the "Evil, Evil, EVIL cancer." We are supposed to find out tomorrow, but that may be pushed back. Even if we find out tomorrow what they initially think, nothing will be confirmed for weeks. But the diagnosis will decide what our course of action will be. And we are on pins and needles waiting for this verdict.
As for now we know that we will be taking Evy home sometime between now and next Monday when she will undergo surgery to put a chemo port into her heart and a spinal tap to check her spinal cord for tumors. From there it is still up in the air.
We are happy she will be going home so that she can see her loving twin, Stella. They have not seen each other since last Tuesday, and Stella is confused yet happy hanging out primarily with Grammy Pammy back at the Ronald McDonald House, which is just a short walk from Evy's room. I am also nervous about going home, as can be expected. Stella has the sniffles and I am so worried that Evy will get sick just before the fight of her life.
We are staying as positive as humanly possible! Once you start to go down that spiral of hopelessness, it is a tough climb back out. Believe me, I know. So for now, I put on a happy face and find joy in my heart. My girl is alive, she shines, and she is. I name this blog "Evy Beats Cancer" because we believe she will. She was a fighter when she was first born and spent week after week in the NICU. Now she has put on those boxing gloves again. She even has a black eye to prove it!
I have gotten so many well wishes and "what can I do?'s" For now we are taking it day by day, but soon we will have to be more organized. Brian will run out of leave and be back at work. I will take you up on your offers. Primarily helping with Stella, perhaps helping with Evy when she is home if she is sick, and vegan meals up the wazoo.
Above all, what keeps me going are the "Evy's a fighter; she'll make it" comments that you have sent via email and Facebook. Please keep them rolling in, join this Positivity Party, and hold us on your shoulders as we trudge on with joy and grace.
How did this all happen, you ask... she is only 22 months old... it is frankly unbelievable what this baby is enduring. Well, I'll tell you.
It all began a couple of weeks ago when Evelyn fell down the steps in our home. She landed on her arm and then stopped using it. We assumed she had hurt it from the fall and took her to the ER. There they assured us that it was a small fracture, put a splint on her, and sent us home with a referral to an Orthopedist. In the meantime I noticed that Evy had a slight limp in her right leg.. the same side as her hurt arm. I remember laughing with a friend and saying that my poor baby was falling apart.
We went to the Orthopedist a few days later and he said it was not a fracture. He could not explain why she wasn't using her fingers at all, and didn't question it. Looking back there were signs that this was neurological and not simply a physical injury from a fall. I even asked him about her ankle and he said that toddlers can't sprain their ankles... and still he didn't question what was wrong. Instead, he sent us home and said that if she did not use her arm in three weeks to come back.
A few days passed.. we had a Halloween party and the normally socialite-esque Evelyn wanted a nap right after her friends arrived. She went right down and slept through much of the Halloween fun. Warning bells rang in our minds. This was not our Evy! She was still not using her arm. No wiggling of fingers. Just a dangling limb. Scary stuff. So we went to the pediatrician. We mentioned the leg, showed her the arm, and she seemed perplexed. She ordered another x-ray and suggested we see a neurologist. I tried to make an appt. with the neurologist the next day and between two offices I was only able to make an appointment for February and then December. Increasingly frustrated, we decided to do more the following day since it was five o'clock.
That night, Brian took off Evy's clothes and diaper in preparation for pajama time and he called me in... Evy's leg was a backwards C- her knee was about 3 inches behind where it should have been. Clearly she had lost most use of it. Saying that I flipped out is an understatement, because this confirmed all of my previous intuition... that she had no fracture but that something else was wrong. Unfortunately we had to go to sleep that night with this big question mark looming while our sweet angel slept.
The next day we called the pediatrician and they soon told us to head to an ER for a full neurological exam. When we got there they sent me home with Stella to keep her from H1N1, which was rampant. I left just as she had been taken for her CT scan. I drove over an hour home with Stella and killed some time doing some work in the yard to quell my nerves. The phone rang and Brian broke the news- Evy had a brain tumor. I threw clothes into a suitcase and left with sweet Stella immediately, my heart breaking into a million pieces all the while.
Evy's brain tumor was on the left side, therefore affecting the right side of her body. It was at the top of her skull and the neurosurgeon has referred to it as "gigantic". (The size of a mango in diameter.) Parts of it were dangerously close to arteries. They suspected it had been growing since birth. (ETA: We now know that it only took 2-3 mos to grow.) Surgery was scheduled for Friday morning and there was still hope that it was a benign tumor. The next day she had an MRI, which saddened the doctors because it showed that it was a much nastier tumor than first expected and was most surely malignant. On Thursday Evy's condition worsened. I was certain we were going to lose her soon. The oncologist told our neurosurgeon that emergency surgery must be performed. As with every other procedure, I held her in my arms in her crib as they wheeled us down to the OR. Through all of this I have kept my mood as light and positive as possible for Evy's sake as well as for my own. As we were wheeled downstairs I discovered that the nurse with us went to Oneonta. We laughed and joked about our time there together, and I even cackled. I think that Evy didn't even know that something awful was happening, just that mama was chatting with a girlfriend and laughing and having fun. I laid her on the operating table and talked to her as they put her under. She only cried for about 10 seconds and then was out.
Seven long hours passed. Seven hours! We stayed as upbeat as possible waiting for news. We saw her at 1:30 am. She had a white bandage on her head that made her look like a little Russian onion-domed cathedral. The neurosurgeon said it went well but that we would not be sure if she was okay until when she woke up.
They kept her sedated through the next morning when she underwent a post-op MRI of brain and spine. The news which resulted from this MRI was that he had gotten every single part of the tumor out, even those around arteries. She had suffered from a stroke at one point, either before or after surgery (I suspect it's what caused the fall.) Her spinal cord looked clear of tumors, but was not 100% because of the amount of blood in the cord from surgery that obscured the image.
When Evy woke up she was speaking within an hour. This delighted our neurosurgeon because he had cut near her speech center and he was concerned about it. Evy was saying "what's that?" and pointing as she often does, and winning the nurses hearts by giving them little waves goodbye. Her left eye was swollen shut and she had a huge incision in the shape of a C on her head. The side of her head was very swollen and bruised. SShe kicks her leg a tiny bit and still does not use her arm. We hope that this is not permanant.
We know Evy has cancer... but we still don't know the pathology of the tumor. We don't know if it's just the "evil cancer", as I call it, or the "Evil, Evil, EVIL cancer." We are supposed to find out tomorrow, but that may be pushed back. Even if we find out tomorrow what they initially think, nothing will be confirmed for weeks. But the diagnosis will decide what our course of action will be. And we are on pins and needles waiting for this verdict.
As for now we know that we will be taking Evy home sometime between now and next Monday when she will undergo surgery to put a chemo port into her heart and a spinal tap to check her spinal cord for tumors. From there it is still up in the air.
We are happy she will be going home so that she can see her loving twin, Stella. They have not seen each other since last Tuesday, and Stella is confused yet happy hanging out primarily with Grammy Pammy back at the Ronald McDonald House, which is just a short walk from Evy's room. I am also nervous about going home, as can be expected. Stella has the sniffles and I am so worried that Evy will get sick just before the fight of her life.
We are staying as positive as humanly possible! Once you start to go down that spiral of hopelessness, it is a tough climb back out. Believe me, I know. So for now, I put on a happy face and find joy in my heart. My girl is alive, she shines, and she is. I name this blog "Evy Beats Cancer" because we believe she will. She was a fighter when she was first born and spent week after week in the NICU. Now she has put on those boxing gloves again. She even has a black eye to prove it!
I have gotten so many well wishes and "what can I do?'s" For now we are taking it day by day, but soon we will have to be more organized. Brian will run out of leave and be back at work. I will take you up on your offers. Primarily helping with Stella, perhaps helping with Evy when she is home if she is sick, and vegan meals up the wazoo.
Above all, what keeps me going are the "Evy's a fighter; she'll make it" comments that you have sent via email and Facebook. Please keep them rolling in, join this Positivity Party, and hold us on your shoulders as we trudge on with joy and grace.
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