Leigh, Kym, William, Jorryn, and Macyn … and our adventures!

This has been a long week (for me, at least!) filled with way too much driving and some more information overload. But, the most important thing is that in all my busy-ness, I forgot to blog that we have a date!

 

Leigh will be admitted on Saturday, April 23rd, and his (first) surgery will be on Monday, April 25th. He’s started on the medication that he needs before hand to get things in check, and currently my day is consumed (in addition to everything else!) with making sure he reports his blood pressure and pulse to me so I can email everything to Karen, and making sure he takes his meds.

 

My Mom is coming to stay with us again, so she can help with the kids while I am focusing on what’s going on with Leigh … YAY FOR AWESOME MOM’S!!! And, Mandy is going to help us (and Mom) with the kids, too, so YAY FOR AWESOME FRIENDS!!! And, aside from that, we’ve got a great support system, so YAY FOR AWESOME SUPPORT SYSTEMS!!! (That’s for the rest of you!!!)

 

I know it’s short, and doesn’t have a lot of information, but I’m beyond tired, and really, that’s all there is to report.

 

Side note: I have no idea what it does, but I just noticed that there is a little box over —> that I can check that says, “This post is super-awesome.” I’m going to check that box. If my blog crashes (or worse, maybe the entire Internet … take that, Al Gore!), it’s totally the super-awesome post check box, and nothing that I’ve done! 🙂

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We have a plan!

We spoke with Dr. Pacek today, and we kinda, sorta have an idea of what’s going on!

Here it is:

1. The tumors in Leigh’s neck are coming out. This will be done in (most likely) two surgeries, and if what Dr. Kebebew spoke to us about in clinic a while back holds true, it will probably be something like this: the right side will be done first, and as long as everything goes well, both during and after surgery, the left side will be done a few days later.

2. The tumor in Leigh’s chest is coming out. Even though there has been talk that this may be secreting, and secreting lesions are typically removed first, this one is considerably smaller than the two in his neck, and is much more easily removed. Basically, it presents less of a problem, so it can wait a little bit longer. Dr. Pacek said that it will probably be done about three weeks after the two neck surgeries are completed.

3. The tumor(s) in Leigh’s ear is/are staying in, at least for the time being. After consulting with the Radiation Oncologist, Dr. Pacek said that this needs to be radiated instead of removed. He said that it will probably be 20 – 25 treatments, but we don’t have a timeframe for when this will be done, other than assuming that it will be after the first three surgeries.

In more good news (having a plan is good news!), Dr. Pacek confirmed that there is NOTHING of concern in Leigh’s liver!!! (This was the kidney/gallbladder/liver scan that was added toward the end of his testing at NIH.)

Karen, our AWESOME clinical coordinator/Super Woman, will be working with Dr. Kebebew to get Leigh on the surgical schedule, and hopefully (although again, I’m assuming), we’ll have some dates to add to this plan by this time next week. If nothing else, we’ve got forward momentum, and that’s a very welcomed change! We know that there is a lot going on behind the scenes, and we’re very grateful for all the work everyone is doing to get us the answers we want and need, but sometimes, it’s just frustrating being a patient and not knowing what is going on!

A Tiny Update

After a couple of weeks of tumor board meetings and no new information, we seem to be making some progress today. I got an email from Karen earlier this evening; it’s looking as though they will address the tumors in Leigh’s neck first as these are now the priority . She has emailed Dr. Kebebew and asked for a surgery date.

We have to start taking (and reporting) blood pressure 4 times a day, and once we get a surgery date, they will start him on the blood pressure medication to get that as well controlled as possible.

I will update as soon as I know more, and hopefully it won’t be as long as the last time!

Thank you all for your continued thoughts, prayers, love, and support! ❤

No News…

I was hoping to log in this morning and give an update that the tumor board had met and that we were on our way to NIH to get all the answers.

 

But, alas, I am not.

 

I just emailed Karen for an update, and am hoping beyond hoping that the tumor board was in fact able to meet yesterday afternoon, but as of this point, we have no news.

Tumor Board

I’ll keep this short and sweet:

 

I got an email from Karen and the tumor board is meeting on Wednesday afternoon. I’m assuming that we’ll go to NIH on Friday for a clinic appointment. (At least, that was the tentative plan had they all met last week.) So, fingers crossed, we should have a game plan by the end of next week!

Yesterday, Leigh had his liver ultrasound and another nuclear study. The liver ultrasound was to look at the spot around the right kidney/gallbladder area to rule out another tumor. The ultrasound tech told him it looked clear, but when we spoke with the clinical coordinator late yesterday afternoon, she and Dr. Pacek had not read the reports or looked at the pictures. Please say a prayer that this was all just a fluke and not another tumor!!! We would definitely take that as a form of good news!

 

The nuclear study he had yesterday was supposed to be repeated today, but we just got word that the images they got yesterday afternoon were clear (as in they weren’t blurry and they could see all of the structures that they needed to see), and that we don’t have to go back today! (It’s nice being able to post positive things for a change!)

 

This afternoon, all of the surgeons are getting together to hold Leigh’s “tumor board.” They will discuss their respective areas of expertise in regards to Leigh’s care and come up with a game plan as to how all of this should proceed. We *may* have to go back on Friday for a clinic appointment to sit with all of the surgeons (less the ENT who is only at NIH on Wednesdays), but by the end of the week, we should definitely have a clear surgical and care plan!

 

I asked Karen (our clinical coordinator) yesterday what kind of time frame we were looking at for Leigh’s surgeries. While she couldn’t (obviously!) give us exact dates, she was confident that the process would start sometime this month. As much as I hate the thought of him having these surgeries, I am confident that we are where we need to be, and that he is and will be receiving world-class care and treatment, and I’m anxious to put the surgeries and his recovery behind us so that we can get back to life as normal!

Last Week

Sorry for not updating sooner, but things have been crazy! 🙂 (Including our super-cute and cuddly littlest baby girl killing my laptop!)

 

Last week, we were scheduled to be at NIH for testing Wednesday and Thursday. At some point, I think sometime on Wednesday, they added a surgical clinic to the schedule for Friday. The first two days were uneventful; it feels like we’re getting to be old pros at this! We have learned the ins and outs of getting on and off campus, and we’ve got the clinical building down!

 

Friday, we met with the endocrine surgeon. His fellow, Dr. Pacek, Lyza and Bill (two of the fellows we’ve gotten to know throughout this experience) were there as well. They are all confident that everything from the neck down will be easily removed by surgery. (They did not address the one/two in his ear, this/these will be addressed by the ENT we saw in clinic the week before.) They *think* there may be another tumor in his right kidney/gallbladder area; they will be looking at this closer in this week’s tests to determine if it is in fact a real tumor, or was just an area of higher metabolic activity as shown on the latest nuclear study. That one (if it is another tumor) and the one in his chest may be able to be removed laparoscopically and orthroscopically, respectively (I think it’s orthroscopic surgery; when I Googled what we heard, I got this and arthroscopic surgery, and this seems to fit better!). The two in his neck, depending on how he tolerates the first (right side) one being removed, may be able to be taken care of in the same hospital visit, with the surgeries being two to three days apart.

 

We are back at NIH today and tomorrow; he’s having another nuclear study over the two-day span, and they’ve added an ultrasound of his liver. After this week’s tests are complete, Dr. Pacek, the endocrinologist, thoracic surgeon, and the ENT surgeon will all meet and discuss the best plan of care in Leigh’s “rare” case.

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