Whew! Lots to digest....

It's as if a huge weight was lifted off my shoulders when Dr Kaine walked into Ethan's room Wednesday morning. 

He did not know Ethan had been re-admitted on Saturday, or any of the issues, until he spoke to Dr Swanson on Monday. Being a holiday-he was not in the hospital or clinic. 

And I should have given him more credit than I did for knowing Ethan so well. He has no intention of sitting on the bald kid and watching and waiting to see how the medical management of drugs and O2 works out-and he never did. He has been formulating a plan for him since we knew how bad his valve was in October. He knows Ethan cannot tolerate pulmonary insufficiency for very long at all and thus wants to intervene quickly-while the meds and O2 are working, and well before we end up as bad as 2011 was with a BNP of 3400. 

So-the very tentative new plan: 

Ethan's pulmonary hypertension is something new for him. Though his pressures were high before his valve replacement last time-not this high.  So Dr Kaine wants to get him in the cath lab quick-like in the next 2-3 weeks. This cath would not only be diagnostic to get pressures and the usual, he would also make sure Ethan has no underlying issue we are missing causing the pulmonary hypertension. He will also measure the conduit from his last valve.  AND, the biggie; pre-stent the valve with a bare metal stent in preparation of having the Melody Valve placed. 

The pre-stenting helps decrease the incidence of the Melody Valve fracturing.  Without pre-stenting, the incidence rate of valve fracture is about 30% at 6 months. This means the valve could be leaking and causing huge problems 6 months after placement.   Not a risk to take with E, thus, pre-stent. 

Though Ethan is significantly too small for the Melody Valve, it's requirements are deceiving. The 30kg weight requirement is not necessarily for weight-it's for overall body size. The assumption is that if the child is at least 30kg, he has vessels large enough to accommodate the catheter size needed for transfemoral deployment of the valve.  This is where the true benefit of the Melody is-no open heart. Its put in through a vessel in the groin or neck. However, our skinny little bald guy is not 30kg, and getting a 23 French catheter in his groin or jugular is not going to happen. Dr K felt the largest he could get in would be a 10 French. 

I know you are asking how he plans to get that valve in there if he can't use the typical deployment method??  Well, so did I.  And since we all know Ethan is anything but typical, the method he plans to use is anything but also.   He will take Ethan to the cath lab, and with Dr O'Brien-the cardiothoracic surgeon, they will open a small area on his chest-medial sternotomy-and place the valve through the right ventricle into the pre-stented conduit. All with a beating heart. No bypass. No stopping the bald kids heart.  This is called a Hybrid version of the Melody Valve. 

Yes, they have to open his chest, but it would be a much smaller incision than for a surgery like his last two. The big bonus is NO BYPASS!!

Dr Kaine wasn't kidding when he said he'd been formulating a plan. 

Wowzie. 

I would be lying if I said I wasn't a little nervous about all of it, but completely impressed that we have the medical advances we have to do something like this. 

In the meantime, Dr K has to get Dr O'Brien on board for the Hybrid Melody Valve replacement.  He will be presenting him at conference to the whole team-Cardiologists, Surgeons, Anesthesiologists, Nurses, etc probably this Friday. If everyone is in agreement that we should proceed, we will get him on the cath schedule. 

One of the most important aspects to the cath is to measure Ethan's current conduit and make sure it is 21mm or less, as we can't use the Melody if it's greater than that.

Then once the cath with pre-stenting is done, the Hybrid Surgery will take place very quickly after. Like within 10-14 days quick. 

Yes, you are reading correctly and can add-that means this could all be done by mid-July. And Dr Kaine said he is hoping quicker than that. He isn't rushing, he just knows that the medical management of the congestive heart failure will only work so long for Ethan, and he wants to get him fixed before he deteriorates. Research has shown that early intervention in valve replacement has better outcomes than when the child is critically ill-like last time for E. 

From all the research I have done on this subject-failure, replacing valves, the Melody, etc., I knew I wanted something done quicker this time. I know we don't have time to spare with Ethan. And Dr Kaine put all my anxiety and fears that they were "sitting on him" for lack of a good plan, at ease with this plan.  And he made me feel a whole lot better when he confirmed that I knew last weekend he was in failure when no one believed me because I KNOW HIM BEST. And once he talked to Dr Swanson he knew also where we were headed and we had no time to jack around.  He didn't call me, because he felt this was a convo we needed to have in person. For that, I greatly appreciate this man. I needed to look at him when he told me his plan, to see in his eyes and his facial expressions if he believed this was the best route to pursue. And I believe it is. 

Dr Kaine is going to call me end of this week. He actually wants to see Ethan in clinic next week, but he is on service so he has to do some creative scheduling.  We will go over the entire process at that time, when Brian and I have had time to come up with any questions we may have and he can answer them fully-not with he and I standing outside the bald kids hospital room in a busy hallway at 7 am. 

  Would I really rather wish we weren't in this position less than two years later? Absolutely.  

But we are. And we have choices to make. And I feel like we have a great team giving us fabulous information helping aid in the choice making. 

And call it fate or whatever-but it has already been in the works for me to change my hours at work. I will be working a Saturday/Sunday/Monday DAYS position-well, into the evening on Monday. But one that puts me at home Tues-Friday, and every single night.  Which also means I will be off for all of the appointments, procedures and potential surgery we have coming up.  Things just seem to work out sometimes. I never would have believed that Dr Kaine was going to approach me with this aggressive a plan, and I am comforted in knowing he has no intention of giving up on our bald guy either. 

Guess the bald guys have to stick together, huh? 

Oxygen, Lasix, Enalapril, and Digoxin, oh my!

We got some really good info when the team rounded today. Dr Swanson spoke with Dr Kaine, and they formulated a tentative plan. 

It seems we are dealing with a host of issues with the little guys heart:

*severe pulmonary valve regurgitation

*congestive heart failure

*right ventricle dysfunction

*Left ventricle dysfunction

*pulmonary edema 

*pulmonary hypertension

The valve leakage is of little concern, as Dr Swanson said conduit valves leak. Most kids tolerate the leakage with little problems. The concern is Ethan is not tolerating the pulmonary insufficiency at all. 

So she believes the issue lies with his right ventricle more so than the valve.  

Bottom line; he needs a new valve.   The right ventricle is terrible and the pressures across his pulmonary artery are too high. 

The "plan" so far is:

*home on oxygen-the right ventricle benefits highly from oxygen-and his sats are not to get any lower than 92. We are to start at 1/2 liter of O's and can go up to 2 liters if needed to keep him at 92. 

*Lasix- because his lungs still sound wet. And we need to keep the fluid down so his heart doesn't have to work so hard. 

*Digoxin-to improve the pumping function of the right ventricle 

*Enalapril- to improve the left ventricle contraction, and also help the pulmonary hypertension. 

*and last but not least-home with an oxygen sat/heart rate monitor to make sure his sats are above 92-only spot checks or if we notice an increased work of breathing. 

And the heart rate monitor because the Dig and Enalapril will lower his blood pressure and heart rate, and we already know he tends to have low heart rates. 

* discharge Wednesday with all our fun new toys and follow up with Dr Kaine in two weeks for an echo to see how well his new regimen is working. 

*cardiac cath in the very near future to measure pressures and prepare his conduit for a possible Melody Valve placement.  Even though he's considerably under the weight requirements for a Melody, and Dr Kaine already admitted Ethan would be the smallest kid he's done one on. 

This kind of makes me nervous. 

We have not yet spoken in person with Dr Kaine, and I'm a little frustrated. We have not taken getting a second or third opinion off the table, and I feel like I need to tell him that we are not unhappy with the plan or the care by any means, I just need to know if there may be other options out there. 

Because if we put a new valve in and it leaks over time like expected-and we already know the bald kid does not tolerate it, how many times do we do this?  Do the benefits outweigh the risks if this only buys him a year before we start this process all over again?  Are there any other options???

So many questions. 

So many unknowns. 

Lots of decisions for Brian and I to make. 

And I just need all the knowledge I can get to make the best decision possible for our little guy. 

For a kid with a just a virus, this sounds a lot like a heart issue.....

Sorry, I couldn't help it. 

Ok, I'm done being snarky, lets get this boy fixed!!! 

My handsome boy taking a nap with his specs on.  

 

Good day

All in all it was a pretty decent day for the bald kid. 

He's down to 1/2 liter of oxygen and his sats are hanging in the mid 90's. we like this. 

His color is better, his feet and belly are less puffy. We like this a lot. 

His chest X-ray looked much improved this morning. We like this a whole, whole lot. 

He is also much happier and appears to be more comfortable than he has in months. 

Hence, the blurry pics below, as he was cracking up while I rocked him in the recliner trying to take a picture of his goofy smile!  

Our happy boy is back!  But for how long, and what do we need to do to keep him this way is the million dollar question. 

Dr Swanson was very truthful with me this morning, and it really helped me understand why they were so slow to warm to the idea he was in heart failure again. 

With the low sats and pulmonary edema, right heart failure is not the typical correlation. 

Left heart failure is. And since we know he has a bad pulmonary valve-leading from the right ventricle to the lungs, it wasn't making sense to her. She is sharp, and pretty textbook focused. So, as we chatted, she taught me some new stuff about E's heart. 

His right ventricle is bad. With a capital B. BAD. 

Bad regurgitation. And it's getting bigger. This is where the left heart issue comes....she feels the size and poor function of the right heart is compressing his left heart causing it problems also-hence, the pulmonary edema.  So both of his ventricles are taking a pretty significant hit. 

How do we stop/help/fix this problem?

She said he probably needs to go home on Lasix to keep the fluid off his lungs and feet and belly. 

Going home on oxygen because the right ventricle will benefit from added oxygenation. 

He also may need to go home with either Digoxin or Captopril-Heart drugs-one for squeezing and

One is a pressor. Both? One? Which one? Neither?  This is where she will let us form a plan with Dr Kaine when he's in this week. 

I appreciated her honesty and once she explained her reasons why she felt this wasn't failure initially, I became way more comfortable with her.   Plan for the night is Lasix, food, sleep and listen to Taylor Swift.   Hoping In the morning we will have Dr Kaine a part of the team. 

My questions to Dr Kaine are so many, I'm not sure I should share them just yet. 

But along the lines of "have you treated a Tet repair with a cadaver valve replaced at 5 years show up with regurg this bad 10 months later?"  

What was the course of treatment and did they recover?  

What do we do, what is your plan?

And ultimately; do you feel we can 'fix' this problem, or is any treatment we do going to be palliative?

I worry we have few options, And one being palliative care. 

So I have to ask around and find out if there are other options.   

Baby steps for now. I'm okay with baby steps as long as they are headed forward!  

Baldy is sleeping comfortably on 4 Sutherland room 4. With an awesome nurse and Bekah as her back up nurse. Cool, dark room, Taylor Swift blaring, Dreamlight Puppy on, a little oxygen, and turn him on his side to sleep if he wakes up. 

Will post more when we know 

Believe me now??

Ethan decided to do a slow decline since his discharge on Tuesday and now we are back in the big house. 

Saturday afternoon he was working pretty hard to breathe, doing the pant-forced expiration breathing thing. And it got considerably worse after he ate. When our home sat monitor showed sats in the low 80's. I was pretty sure they were right.  While debating the drive downtown he took a turn for the worse and got really pale with blue/purple lips.  Thus he was taken by ambulance-thank you KCFD station at 111th and N Oak for all your help!  And John and Stephanie-the crew that transported him-you rock!  John got an IV in the bald kid with one stick while bumping along the road!!  

Awesome ER Resident Dr Underkoffer and attending Dr Jen Watts-who knows E pretty well-did the work-up. Chest X-ray, labs, blood cultures. 

Chest X-ray showed 'significant fluid on his lungs' or pulmonary edema. They consulted with Cardiology and gave him a dose of IV Lasix in the ER while getting his room ready on 4 Sutherland. 

He went back on Blue Team-Cardiology Service, and the same team that sent us home on Tuesday was the one re-admitting us. 

One resident-Dr Miller visited us in the ER. 

Supervising Resident Dr Fischer met us on the floor

And the resident who was condescending to me last week -Dr Wood-came in later. We are on better terms now. Because now I get to be the one that without actually having to say it-said 'I told you so' with my expression. She got me. We're friends now, so much better friends that when I asked for a BNP (Brain Naturetic Peptide) to be drawn-the test that indicates heart failure-she agreed we needed it.  

It got drawn and sent to Truman last night. 

And, wait for it......

It was 422. 

Normal is <100.

His last one in October was 39. 

Hmmmm, heart failure??

The team rounded just a little bit ago. Dr Swanson had him last week and is still on.  

Now that we are back with pulmonary edema and increased oxygen needs, she admitted they can't use the rhinovirus/enterovirus as an excuse anymore. 

But what is it?  

She's not willing yet to admit that he's in failure and that he can't tolerate "significant, severe pulmonary regurgitation, as most kids tolerate it for years-up to a decade even". 

Well, in case you haven't noticed, our bald guy doesn't quite fall in the category as "most kids". 

She's ordered another echo for today to see if there has been a change from 6 days ago. But it may not happen if they can't get a tech in here today. 

We discussed that replacing a pulmonary valve less than two years old is typically unheard of, and I understand that and the last thing I want is for him to have to have another open heart if there are other options. She mentioned the Melody Valve and I told her we had talked with Dr Kaine about it. But due to his size he may not quite yet be a candidate for it.  

So I threw it out there-we were going to be talking to Dr Kaine about other options and one of those being a second opinion at either Boston or CHoP. 

That his quality of life during the 6 months he was in failure prior to absolutely having to replace the valve was so poor, that we weren't willing to sit and wait for that to happen again. Not if there are other options. I told her I knew Boston has a Heart Valve Program that focuses on valve repair vs replacement and if that could possibly be an option, we want to explore it. 

She seemed very amenable, but did tell me she is hoping to find another reason, any other reason that he's got pulmonary edema and oxygen needs other than congestive heart failure. I told her I would hug her if she did!  

He's here until at least Tuesday in the hopes the Lasix will get enough fluid off his lungs he can come off O's.  He may be going home on Lasix again, and I again asked about home oxygen if that prevents us from having hospitalizations just for oxygen support.  She relented that would possibly be an option too. 

She's going to consult with Immunology today about checking his IgG to see if he's low and may need an IVIG dose while here. 

She is going to consult with Dr Kaine, so I'm sure after the holiday weekend we will see him stop by here. 

And I think now they believe this crazy Mom. 

Who really does know this bald guy. 

Mentally exhausting day

Sorry for the delay in posting-if you didn't already know, Ethan was discharged Tuesday afternoon-we got home about 4:30pm. Not without a bit of drama, of course.  

Per Cardiology Resident and two nurses:

It's not his heart. 

It's a virus.

No need to involve Pulmonology or Immunology. 

His sats are acceptable to be at 90, or even high 80's when ill. 

It's just a cold. 

Brian and I are seeing a pattern with Ethan eerily familiar to the 6 months prior to him being admitted to the ICU for drips for congestive heart failure and a BNP of 3500. 

We are seeing a fussy, lethargic, panting child with no other respiratory distress indicators. 

We are seeing puffiness of his feet and color changes and mottling up his legs and arms.

We are reminded of the months we took him to his pediatrician saying "he's just not right"

We are back to admissions for minor viruses, causing him considerable drops in his O2 sats. 

We are seeing a kid whose hand you can't keep out of his mouth without a brace on it too weak to put it there because he is lying with his arms over his head to help him breathe. 

We are envisioning a slow downward spiral of our guy reminiscent of 2011. 

We are seeing the big picture. Not sure anyone else is. 

We have been told to never take Ethan to Children's Mercy Urgent Care North again by the Medical Director himself, Dr Michael Moran. During the phone call he made to me on Thursday morning, he stated "Ethan's fragile state and deteriorating status can't be handled at the UC"

He is "Outside their scope of practice" 

And we are "not to bring him back here if he is sick". 

But wait, it's just a virus, a cold.  He's not deteriorating. Per Cardiology. 

Colds are outside your scope of practice?  

You suck as a physician then, and I will never, NEVER set foot in your UC again. 

I will be that mom that makes unnecessary visits to the ER for completely non-emergent needs like suctioning, if its after PCC hours. At least I still know a few awesome nurses there. And X-ray Techs!

At our discharge follow-up appt with E's amazing pediatrician Dr Russell Thursday afternoon, I lost it. 

I cried, she cried and then we had some serious discussions. 

The elephant in the room was addressed; we will outlive Ethan. We've known it for a long time. But in the interim he deserves to continue to have the same quality of life he is accustomed too.  And if we don't feel those requests are being honored, or are actually being roadblocked, we need a second opinion.  And we need it fast before we travel much further down this road and reach a point we can't turn back from.  Sooner than later.  

This summer. At one or all three of the best pediatric Heart Care Centers in the country. 

University of Michigan

Boston Children's

Or CHoP -Children's Hospital of Philly 

Her words. Someone who has cared for E for 5 years. And she sees the big picture. 

We need a plan of action. I'm not asking for a crystal ball reading to tell me when he's going to go into failure and how it's all going to come out. I'm asking is there anything else we can do in the meantime to ensure he continues to have the great life he has.  And at what point we intervene, and based on what his symptoms are-how do we intervene?  Meds?  Oxygen? Surgery?  And in what order.  

If he does this-we do this. 

And if he does this-we do that. 

Etc. 

I don't need a timeframe. I need a "when he does do this we will be prepared plan".

Give us some standards. Make a plan. Cause if we make one-that will inevitably ensure Ethan doesn't follow it!   It's when we wing it that he will prove to us he's in charge, and it won't be pretty. 

At this point, the sit and watch and wait for him to gain 22lbs to be eligible for the Melody Valve Transfemoral Catheter procedure approach doesn't work for me. 

In all fairness, we have not spoken to Dr Kaine, he may not even know yet E had been admitted two days after our Cardiology appt last Wednesday. But I have called clinic and left a message for him to please call me at his convenience. 

He may have a plan, I may just need to ask him to clarify what that is. 

But if he doesn't, or we have other options out there and I don't know about them and seek them out, I will always wonder if I did enough for him. 

It's my right and my responsibility as Ethan's Mom to do this for him. And if any, ANY doctor caring for him can look me in the eyes and tell me they wouldn't do the same thing for their child then it's time we parted ways with that Doctor. 

Because we're not giving up on our little bald guy. 

We know him best. 

And we're not going down without a fight. 

So be on our team, or get out of our way. 

To my besties who called me, text me, sent FB messages, and the things you said and offered;  thank you. I needed it, you knew it, and you were there.  

Thanks for being on my guy's team.

 I love you. 

Confused

So.....Ethan decided to visit the big house again.  It all started Saturday afternoon when I made the mistake of checking his O2 sat with our little portable monitor because he was kind of fussy and agitated and while holding him noticed he was panting to breathe and could feel some rattling in his chest. It read 67. Not good. But I wasn't sure I believed it. But before we traipsed on over to Children's Urgent Care, after the ordeal I got for taking him there last time-and not really wanting to drive downtown to find ours was inaccurate and he was really 97, I thought I would verify with a real monitor. Called my sis, and being that we just happen to know some people who know people, we had front door service with a real monitor in about 15 minutes. 

Long story short-our sat monitor was inaccurate. He was actually 73. He lives at 98. 

By this time he was no longer panting, in no respiratory distress, not retracting, just had oxygen sats in the crapper. Looked perfectly fine. But he was wheezing a bit. So we figured his asthma had been exacerbated by the change in weather and allergies. I figured some deep suctioning, Atrovent and the miracle car ride would find us going right back home in a couple of hours. So we took him to Urgent Care North. Sats in the 70's there bought him a chest X-ray, blood work, a couple of breathing treatments and some steroids, and after all that, when his sats wouldn't come back up, an admission downtown.  The Dr there has taken care of Ethan in the past, and really felt he sounded and looked like an asthmatic episode. But his white count was elevated and his liver function labs were elevated.  The Dr wasn't overly concerned with us bringing  him there. The Respiratory Therapist however, was, for lack of using nicer words, a prick about it. He berated me for not calling an ambulance  and having him run hot downtown. He continued to say that sats in the 70's always require an admission.  And how I should have known better than to bring him to UC-what if they had to provide him with more support than they were already doing?  Oh, what, actually do some work?  Cause as soon as his breathing treatment was done, we didn't see him back in the room until it was time for another. As a matter of fact, after he helped us take Ethan over to X-ray, while I was helping get his chest film, he said he would be right back to help us take him back to his room, and stepped out. Guess who never showed back up?  And as the tech and I managed to get him back on our own, he was sitting at the desk chatting it up. 

 If Ethan were so critical he couldn't be managed there, I'm guessing I wouldn't have been the only one in the room with him except when labs or breathing treatments were being done. I know what critical looks like. I've seen it with Ethan. My son was a DNR at one point. And like I told the admitting docs who asked what his normal baseline was and I pointed at him and said 'just like this-minus the low sats'. Ethan looked no different than he did when we put him on the bus for school Friday. My crazy mother instinct told me something was off, and I was right. 

Strike 2 for Children's Urgent Care North. 

They don't get a chance for #3. It will be downtown from here on out. People who don't want to take care of my son don't get to. We will let you use your mad skills on runny noses and ear infections since he's too complex for you. 

Up to 6 Henson we went-but not before seeing all Mom's old co-workers in the ER who couldn't believe how big the bald kid had gotten and couldn't resist a few hugs and rubs on his handsome smooth head.  

Last night he did ok, slept with 2 liters of oxygen on, and when they tried to wean him he dropped to 78-even while awake. We have not yet seen any low heart rate episodes this time-knock on wood. 

They did do a virus panel and it was positive for rhinovirus and enterovirus. So he has a cold. And a virus everyone else tolerates like a cold. But he's got sats in the 70-80's. 

Today the team rounded and decided to just completely shut his oxygen off and as long as he remained above 80 he could go home this afternoon.  80?!?!?  He lives at 98-99. He had to be admitted for 70's and last admission-5 weeks ago-he couldn't go home until his sats were above 96 on room air. 5 weeks later 80's are acceptable??? What changed???? Oh, I forgot, we saw Cardiology on Wednesday and his valve leakage is now severe, and a valve replacement is probably 12-18 months away. However since we know Ethan doesn't tolerate pulmonary insufficiency very well, it could be sooner.  And as Dr Kaine said-Ethan doesn't do anything typical, so who really knows. But we are going to do follow-ups every 2 months. So I guess since we know his valve is crappy again we should just expect sats in the 80's and accept them.  

The resident said the cardiologist on today was not at all concerned about any of this being his heart after having reviewed his last echo, EKG and Dr Kaine's notes.  

But after I mentioned he's not on oxygen at home, he lives at 98-99 and the reason he had to stay so long last time was because he had to be back at baseline why is 80 now ok??  

No good answer, but oddly enough his orders got changed to "has to be at 90 or above or back on oxygen". And he's been on oxygen again since 1pm. 

Oh, and we just got transferred to 4 Sutherland.  

The heart floor. 

Hmmmmmm.......

Oh, and check out his feet. Puffy much??   

And then the nurse noticed his oxygen tubing was leaving a mark on his face, but it hadn't been tightened.  Retaining fluid maybe?  Nah, it's not his heart. No way. 

I always knew I loved this woman......

Yep, Angelina Jolie did it for me again. 

Love this chick. 

Her announcement of a double mastectomy with reconstructive surgery due to her BRCA gene mutation is nothing short of amazing. 

Like the article states-it was her choice. 

Prophylactic mastectomies may not be the answer for every woman with a BRCA gene mutation, as my choice may not have been even that of my best friends.

 But that's what's awesome about having choices and options in your healthcare. 

Angie -yep, we're sisters now, I can call her that- basically said she was consumed with fear that she would die of cancer at an early age, much like her Mother losing her battle to ovarian cancer at 56. Or her Maternal Grandmother who died at 45 of an unidentified illness. Odds didn't seem to be in her favor, I agree. And I understand. My Maternal Grandmother died of breast cancer at 53. I often wondered which of us women-one of my Mom's 4 sisters or her, me, or one of my sisters or female cousins-would be the one to be diagnosed with breast cancer.  Not could one us, who and when would one of us be diagnosed? Cause I just always felt certain that breast cancer had never fully left our family alone.  So I get that fear. 

“She is a special case, and you can completely understand why she did it,” said Dr. Susan Love, the author of a best-seller, “Dr. Susan Love’s Breast Book,” and a breast surgeon. “But what I hope that people realize is that we really don’t have good prevention for breast cancer. When you have to cut off normal body parts to prevent a disease, that’s really pretty barbaric when you think about it.”

*taken from the NY Times Health Section 5/14/2013

She's a special case and you can completely understand why she did it, but still find it barbaric?  She was very clear why she did it-to be around for a long time for her children and partner.  To help ease her children's fears of losing their Mother having never gotten to know their grandmother. Well, Dr Susan Love, I don't see anything wrong with that reasoning.  And you making that statement sounds like you don't think someone like, me, for instance, would be special enough, or have good enough reason to want to be cancer free-or at least sway the odds more to my favor.  And I think my husband and children would disagree with you.  Even though I do not carry the BRCA gene mutation, I researched being tested a few years back and knew what my decision would be if I did.  Prophylactic treatment all the way. 

When I was diagnosed, I had cancer on one side, in one breast, in two locations. I had to ask my surgeon to take both my breasts. He never offered it to me while presenting treatment plan options. I had to ask if he would, and if he thought insurance would pay for it.  I had to ask about nipple sparing technique-which I did not do BTW.  I had to ask for the oncologist most likely to do genetic testing. And I had to ask for my surgery to be delayed so we could wait for the genetic testing to come back first, in case it was felt a hysterectomy or oophorectomy would be in my best interest to be done adjuvantly.  Had I not educated and advocated for myself, and my health, those options would not have been offered to me. I have said many times since that I am saddened by women who don't know to ask, or what to ask, or where to start and are guided by physicians who have no vested emotional interest in their patients. My question to my primary care doc was "who would you take your wife to?"  Cause that's who I want.  Don't get me wrong, I was very well taken care of by my physicians-friends and co-workers and referrals. But I also walked into the office already having an idea of my own how this was gonna play out.  And I got what I advocated for. 

So if you think Angelina Jolie can't bring anything to the table when it comes to her announcement other than more media recognition or greater celebrity status, I say you're a fool. 

She did her business in private, and can I say WOW, really private for nothing of the sorts to have leaked prior to her announcement!  And she isn't asking for pity or acknowledgment. She's letting all women out there know-the 200,000+ that will be diagnosed this year alone, that there are fabulous options available to them.  She encourages women to empower themselves with knowledge and advocate for what they want and need. 

She mentions more than once the costly expense of genetic testing. The BRCA test is about $3400 and you need to submit some familial info to be approved. No medical records of family members, just relation, diagnosis and age at diagnosis. And you have to meet some criteria to be considered for the testing. And there is ONE, I repeat ONE  lab in this country that does the testing. Myriad Genetics in Salt Lake City, Utah.  Maybe a little pressure from a well known celebrity could drive the cost of this test down, or prompt more insurance companies to consider the price of genetic testing and prophylactic treatment vs surgeries and chemo and radiation once the cancer emerges.  I know having the mutation doesn't automatically mean one will get breast cancer, but in this case the doctors say having done the mastectomy, her odds went from 87% down to 5%. Those are some damn good odds I would be willing to go right to my bookie with.  Because even with my mastectomies, chemo, and tamoxifen, I still have a 10% chance of recurrence. 

And these days with a lot of focus on preventative medicine to prevent diabetes and heart disease, why not preventative treatment for breast cancer?  I don't discount healthy eating and exercise, but with a gene mutation, the groundwork is already laid for something to go haywire, so doing everything right and still getting cancer is likely. 

 And while it's said that having the BRCA mutation is rare, and preventative treatment is drastic, there are doctors who admit even doing what I did was unnecessary! And I personally know two women with gene mutations whom I consider brave, amazing people.  One who knew she had the mutation prior to diagnosis and said she was just waiting for the cancer to rear its ugly head, and the other has a significant family history and chose prophylactic treatment to hopefully never endure what she saw her loved ones go through.  These women have helped me so much along the way, they are my personal heroines! 

And rare or not, doctor or not, degree or not, take a walk in the shoes of any woman on the receiving end of a cancer diagnosis or a 87% chance of getting cancer and then you can judge her decision. 

And only then. 

Cause statistics simply don't stack up against the will to do whatever it takes to watch your children grow up. 

And nobody has the right to take that away. 

To my Children on Mother's Day

I can't thank you enough for being given the privilege of being your Mom.
And I can't apologize enough for the things I did wrong.

Our life is crazy and wild. And I wouldn't trade a minute of it.
Even the minutes that made us hurt, because those are the ones that made us stronger.
Those are the ones that let me, as your mother, wrap you in my love, and kiss away boo-boos and tell you everything would be ok. Even when I wasn't sure it would.

Cause that's what Moms do.
Or at least that's what I've figured out over the last 16 years of being a Mom.

Because there was no handbook that came with any of you.
Sure, there were plenty of Dr Spock books, and "What to Expect...." books and other experts ready to tell me when to feed you, when to change your diaper, when to put you to sleep and when to wake you up. What car seat, stroller, high chair, bathtub, thermometer, brand of diapers, wipes and formula were the best for you. When and how to potty train you. How to "baby proof" the house.

I bought a few of those books. And I read a few pages of them.

And then I realized, through common sense and a lot of advice from my Moms and Grandmas and aunts and sisters and friends that you will cry when you are hungry or need changed. And when those basic needs are met if you keep crying it's perfectly ok to put you in your bed and let you exercise your lungs for a little while longer.
And if I put you to bed too early-you would be up even earlier. So if I put you to bed later, I would actually get a long stretch of good sleep. And those nights that you did wake up, it was the most magical time to sit and rock you back to sleep, just you and I.
And to never, never, ever wake a sleeping baby. EVER.
As far as car seats, strollers, and all that stuff goes, breaking the bank or taking out a small loan to buy the most expensive, top-of-the-line brand didn't make you any happier or better baby. That brand comparison stuff comes a little later-and lasts a lot longer-and that there are mean kids out there who will judge you by your brands. Toddlers don't pass judgement on whether you are in a Britax car seat or a Graco one. Just the Moms did, and it's easier for me to walk away from those people than it would be for you growing up.
As far as potty training goes, they don't tell you boys are much harder than girls, and that at some point I would be throwing Bob the Builder underwear away in the McDonalds bathroom because I thought taking you to the play place for lunch in your big boy underwear would be the breakthrough in potty training. And I forgot to pack a diaper, a clean pair of underwear or a plastic baggie.
That "baby proofing" the house really meant putting everything I ever liked, and wanted to keep, away until you were, say, about 10. And that I wasn't going to do that. I wasn't going to decorate the top half of the Christmas tree only, or cover every outlet so that when I needed one, I had to pry the cover off and break a nail in the process. I was going to teach you which items are yours and ok to touch and which are not. And if you happened to shock yourself trying to plug your Christmas tree lights in, you would only do that once.
Those books don't tell you that your baby will roll off the bed, or changing table because you turned your back for one second. And that they will be fine after all their tears, and mine.

It wasn't one of those books I referenced when I didn't know how high I could let your temperature get before I needed to worry. Or how much Tylenol was ok to give. Or what was the best way to relieve a colicky baby or constipated baby. Or if that cough sounded like a barking seal-and how to help. It was my Mom. Or My sister or Aunt. Another Mother.

And I messed up. A lot.
I forgot it was 'dress like your favorite book character' day at school and had to come up with a last minute make-shift costume at midnight.
I sent store bought cookies when homemade ones were still allowed.
I wasn't a PTA mom or a classroom volunteer Mom, or a bus-stop Mom.
I threw away most of the artwork/schoolwork you brought home-just saving my favorites instead of packing them away.
I was so tired and broke that one night after work I let you pick out your dinner at the Conoco Gas station around the corner from our house, so I didn't have to cook anything and could use the gas charge card. I did make sure you at least got a sandwich made on whole wheat and milk to drink along with your chips and cookies.
I was late picking you up from school because I was 8 months pregnant and had been taking a nap and I showed up at school in my pajamas with bed head.
I let you eat crappy cafeteria food for dinner every night while your brother was in the hospital.
I kept you out too late at night and let you miss naps.
I let your feeding pump go off for hours after it was done because I was so tired I fell asleep,and never heard it.
I forgot to give you your medicine. On time. Every day.
I didn't make it to every practice, game, concert, choir performance, awards ceremony or class party.
I yelled and lost my temper. And yelled some more.

I hope you realize that those events I missed while at work I hated to miss, and made sure your Dad or another family member was there standing in for me.
I hope you realize my absence was because I was at work, earning money to feed and clothe and house you.
That feeding you from a gas station is never as bad as not feeding you at all.
That I would rather sit at home and watch movies with all of you in my bed than go out with my friends.
That every time I attend a game or meet or concert or any event you are in that I cry. I cry tears of pure pride and joy.
That when you aren't home with me, I worry about where you are and who you are with.
I worry if I taught you right from wrong and that you make the right decision. Or if you aren't sure, that you are never afraid to ask me.
That I wish I could protect you from mean words and hateful people, but that I can't stop what other people will say or do. I can only hope I have taught you better than to do that to others.
That your heart will never be broken, but when it is, I want you to know you can cry on my shoulder, in my arms, no matter how old you are.
I wish I could shield you from sick siblings with life threatening illnesses and multiple surgeries, and a Mom with cancer, but know that it was your love and sweet faces that helped me get through those tough times.
That being the bigger person and saying your sorry doesn't make you weak. But that sometimes some people don't even deserve that.
That I've taught you who to walk away from, and who to keep in your life.
That I've taught you to stand up and defend those who can't defend themselves.
I hope that through all the mistakes I've made, that you never question my love for you.
That we are all human. None of us are perfect.
That I never wanted you to be the prettiest, smartest, most athletic.
I want you to do your best with what you were given and to be kind and compassionate.
To always be the nice kid. Never the mean one.
That the time I spend with you means more to me than the things I can give you.
And I know we won't always have that time, or that you won't want to spend it with me. And that's ok too, because Mommies need a break every now and then also.
I hope that I have lead by example, but that you take with you the lessons I learned from my mistakes too.

I hope you someday have kids as wonderful as yourselves, and know that along the way mistakes will be made. And it will all be ok. And I will always be there for you when you're not sure.

Happy Mother's Day to all the influential Mothers in my life, because you are who made me the Mother I am today.
To all my Sisters, Cousins, Aunts, Friends and those Mothers I've never met in person but share common bonds with-I hope your day was as fabulous as you are. Because you deserve it.

*yes-I'm in my Pjs on Mothers Day in this pic. Why? Cause I can be. Welcome to our crazy life.