Here we go...

Monday (tomorrow) is the first day of chemo...Unfortunately we still don't know which arm of the clinical trial she will be on, and we won't know until we go in tomorrow to begin treatment. This is mostly due to the Thanksgiving holiday...so while the Germans worked at the end of the week last week, we Americans did not....We were hoping to hear something at least on Friday, but it did not work out like that.

The Thanksgiving holiday was great, however. Megs and Trip made the trip back to Charlotte after just being here the the previous weekend, and we, of course, had Linda and the kids with us. We had a number of neighbors and friends stop by to bring food and desserts, even though we didn't need anymore. We fried one turkey, and smoked another just to ensure that we had plenty of leftovers for the coming week. Guess what...we are already almost out of turkey... so we only made it through one weekend of leftovers!

We are thankful for all of the sweet messages you've been sending, and we are thankful to be able to spend the holidays with people that don't just want to be together, but need to be together. So maybe we cry here and there and confuse our children/grandchildren, but for the most part we are laughing and telling stories and starting to remember more of the good times that we collected over time, rather than the bad ones at the end...

The coming weeks hold much uncertainty, but we are not uncertain about the love and support that surrounds us. We are truly blessed to go into this battle not wanting anything other than to fight a good fight, and win in the end.

I'll let you all know how she's doing tomorrow after her first treatment. Love you,

Kyle & Allyson

Grayson's tonsillectomy a success!

Hey Everyone! So Grayson had his tonsils and adenoids taken out this morning.... The picture above was taken shortly after they gave him a light sedative to relax him. He was absolutely hilarious and started telling us we had four eyes and two noses. He was signing songs and giggling...and had no problem being wheeled away from us.

And then he woke up from surgery...in pain and not knowing anyone around him. :( They wouldn't allow us back into the recovery room until he was fully awake, so when we got there he was crying hysterically and couldn't calm down. With a little help from narcotics we finally got him to drink some water so they would let him go home. After a couple hours of napping he woke up and ate two whole sandwiches!

We were not expecting him to do so well, so quickly...so life is good! His voice is a little higher than it was when he went in, so that is a funny side effect...but the doctor said his tonsils were the size of golf balls, so I guess it makes sense that it would change the pitch a little bit.  He's still complaining about pain, but that is completely normal.

Our boy is a trooper!

Allyson update: She will start chemo next week Monday. Germany was not able to get her fully into the clinical trial before today, and the hospital only does chemo on Tuesdays and Wednesdays. They are going to make a special exception for her next week to get her started. We are working with great people.

Love you!

Kyle

Linda is "in the know"

Well, we are picking up on real time now...It is Sunday afternoon and I have a quiet house as Linda and Allyson took the kids to church. I needed this time to put the blog back together and get everything updated before I left on my trip. I'm headed to DC for two days (work) and then I'll be back in Charlotte Tuesday night and ready for Grayson's surgery on Wednesday morning (tonsillectomy). When it rains it pours!

It kills me to leave right now, but my company has been unbelievable in giving me all the time I've needed over the last 3/4 weeks. This trip allows me to hand off the last couple of major tasks that I've been managing (over 40 people) to a new Program Manager that I hired last month. Once this trip is over I should be able to rely on my network of managers in the DC area to take care of anything while I tend to the home front. This should significantly decrease the number of days I'm gone for the next several months.

Linda is here to help with the kids, and go with Allyson to her appointments on Monday and Tuesday as she learns about the various drugs that will go into Allyson's system over the next year. Thank you Linda, for jumping right in with both feet during a time that is already extremely difficult for you personally. We love you so much, and appreciate you being here.

I'll sign off for now and send out more posts on Wednesday after Grayson's surgery...which may even be after Allyson's first chemo treatments on Wednesday as well.

Be thankful for good health...you don't need much more....

Love you,

Kyle

Port Insertion surgery

Thursday morning of this past week she had the chemo port installed...everything was a success...email to family:

Happy Thursday Everyone!

Allyson had her port put in this morning, and everything went very smoothly. The port will make it much easier to administer drugs and take blood throughout the course of treatment because it saves you from being poked with needles. Allyson doesn’t have very good veins, so she would be hurting badly if they tried it the old fashioned way. It is much smaller than Ed’s port was (just under her left collar bone), so we were happy to see that. You won’t even be able to tell that she has a port when she has her clothes on…so that is awesome!

The next appointments are scheduled for Monday, where she goes in for one more biopsy (to collect more samples for clinical trial reasons), and then she heads over to the oncology office for what they call “teach”. This is where they will educate us on all of the different drugs that they will be administering throughout the chemo sessions (6 rounds of chemo administered every 3 weeks). Then we just hope that they will be able to fully start treatment Tuesday or Wednesday with her first round. This all depends on Germany getting back to the oncologist’s office and giving full approval for her to begin. If it doesn’t start next week, it will be the following Monday.

Grayson is scheduled for a tonsillectomy next Wednesday because the kid is constantly sick and his adenoids are the size of golf balls. The doctor seems to think that this will be a major improvement in his quality of life after it done, so we don’t want to put it off any longer. Should be a fun Thanksgiving! J

Megan and Linda get in this afternoon, so it will be nice to have some help as we work through all of this and still keep some sense of normalcy for the kids.

Love you all, and I will let you know when I get the blog back up and running. If I ever have anything important to post that I think you need to see ASAP I will definitely send an email out and point you in that direction so you aren’t kept in the dark.

Post CT Scan - Good news! Final treatment plan set...

Ok...so we are getting close to real time now. On Wednesday, 19NOV14, we saw the medical oncologist again to review the CT scan results that showed no other evidence of cancer elsewhere in her body! So now we have to wait for the clinical trial acceptance before she can start chemo. This should come either next week Tuesday or Wednesday, and if it doesn't come then, they will start her on chemo on the following Monday (a week from tomorrow)....Email to family:

Hey all!

Good news to share! CT Scan showed no further evidence of spreading cancer anywhere else in the body cavity! Yea!

So now we move forward with treatment as originally planned…she will have the port insertion surgery tomorrow morning, and then we stand by and wait for final word on whether we are part of this clinical trial or not. That should come early next week as the biopsy samples from Friday just arrived in Deutschland…which means a likely start to chemo either Tuesday or Wednesday of next week (25 or 26 November). If final approval doesn’t come by then, Ally will start chemo on 01DEC14 for sure.

She does need more biopsies done a) for clinical trial reasons, and b) to evaluate the other breast…so that is scheduled for next week Monday.

Wish us luck tomorrow…we’ll need it for when Linda sees the port and realizes what is happening.

Love you all!

Allyson returns from MI on Thursday, this is post Friday's visit:

An email I sent to my family after Allyson returns from MI and goes through another battery of tests over the next few days:

18NOV14:

Wanted to give you an update as we’ve learned a little more, and had more tests run. I’m sitting here re-writing this thing over and over because it is hard to figure out how far in depth to go with you all….hopefully I get better at providing what you want to hear and not what you don’t need to hear. 

Allyson got home from Michigan on Thursday night, and we were in with the medical oncologist early Friday morning (they made a special arrangement for Allyson to see this guy due to what happened with her dad). This medical oncologist we met is great, and actually played a lead role in the introduction of the Leukemia drug that Ed Kearney was taking after he first got diagnosed with Leukemia back in  the early 2000s. He is also very knowledgeable about Allyson’s blood clotting disorder, which gives us more comfort that we are in the right hands. He’s been on the cutting edge of a number of breakthroughs over the years…so, in general, he’s a stud.

After reviewing the history of how we got to that point on Friday, the treatment options seemed to be the same that we had heard before from the two surgical oncologists that we saw previously. We are likely headed for 6 rounds of chemo every three weeks (so 18 weeks of chemo), followed by either lumpectomy or mastectomy (probably double). However, this doctor explained that Allyson is likely eligible for a clinical trial that is contained to people in her same condition (HER-2 amplification positive…the protein growth driver that she has).  This particular clinical trial will have 50% of patients undergo the current standard of care (chemo, followed by surgery, followed by post-surgery drugs for a year). The other 50%  in the trial get a different type of chemo, but due to some sort of cellular reaction the chemo affects are drastically reduced and the growth of the tumor(s) is stymied more quickly and effectively, followed by surgery, followed by 5 years of a couple drugs. We are obviously interested in more effective treatment with less intrusion upon her health by the chemo…so we signed up.

However, in order to qualify for the clinical trial they needed more biopsy tissue so they could send it to Germany for full approval to enter this international clinical trial. The doctor also felt with his own hands some other areas of concern that he wanted biopsied. Since Ally’s first biopsy was not all that bad, she said “no problem”.  Well…Friday afternoon was WAY WORSE. They were using an MRI to guide the biopsy needle and it was way more painful to the point where they didn’t even get all they needed for the other problem areas. The oncologist also ordered a full thoracic cavity CT scan to rule out any other forms of cancer elsewhere (this is what we wanted done in the first place so we were happy with that). That happened yesterday morning.  

Today, we got news from the radiologist (MRI doctor) that they found a different type of breast cancer in her Biopsy from Friday (Ductal Carcinoma In Situ). This is the most common non-invasive (think non-spreading type) of cancer in breast cancer patients and it is the same breast as the other cancer. In doing minimal research online, having these two cancers together is not all that uncommon, and many think that have DCIS actually leads to IDC (Invasive Ductal Carcinoma that we found first).

So…tomorrow we go see the medical oncologist again to review all the new data that the MRI on Friday, and CT scan from yesterday, provide… Given that we’ve had nothing but bad news after every test run, we are very nervous about tomorrow. Ally feels that if the cancer is just confined to her breasts then she can keep a positive mental attitude about this and push on with whatever treatment that we are slated for… Please pray and send positive thoughts that we don’t find out that the CT scan found other evidence of cancer within her thoracic cavity.

As long as nothing else has changed diagnosis-wise, she will have a port put in on Thursday morning for the introduction of her first round of chemo (also likely Thursday). Linda Ally’s mom) and Megan get into town on Thursday, as Linda has escaped Michigan after all the post death procedures and is on the loose. They left MI today and will visit her sister and brother in Kentucky, and then continue down to see us on Thursday. Since Allyson will be recovering from her port insertion and possible first dose of chemo, we will obviously tell her what’s going on at that point. Wish us luck there… this stuff is too much to handle all at once for anyone...

So that is about it for now. I will send an update tomorrow evening after we see the oncologist and relay whatever news we have at that point.

I love you all, and appreciate all the notes that you continue to send. Keep sending them! Sweetness is like gold right now…

Ed Kearney - RIP - We will love you forever...

A wonderful husband, father, brother, uncle, and friend, Edward P. Kearney, 72, fought a courageous 13 year battle that ended at home on the evening of November 9, 2014 with his wife, Linda (of 45 years) and daughter Megan at his side. Always the wife-pleaser, Ed hung on until Linda told him it was ok to go. Ed was born on March 26, 1942 to parents Helen and John Kearney in Washington, DC. He is survived by his wife Linda, son Sean, daughters Erin Mueller (Josh), Allyson Gahan (Kyle) and Megan McGrath (Tripp) , sister Grace Anne, brother in law "Smitty", six grandchildren, nieces, nephews, and countless close friends. Ed is reunited in eternal life with his parents, sister Mary Theresa, nephew Michael Grimesey, and grandson Brody Gahan. Ed also had a "second family" as his wife Linda sometimes referred to his employer of almost 40 years... WLUC TV6. Ed was passionate about the news and had the uncanny ability to balance family and work while keeping both happy. He has touched countless lives through his career at TV6 and was inducted into the Michigan Journalism Hall of Fame in 2006. Ed will be remembered for his quick Irish sarcastic humor, his love for the Green Bay Packers, his dedication to The Lord and savior Jesus Christ, and his ability to fix anything. Ed also continued to help and serve others even while he was fighting his own battle. He delivered meals on wheels and volunteered to drive patients to/from doctor appointments, in between his own. Most of all Ed was a wonderful husband and an unbelievable father.  In lieu of flowers, Ed would have asked that you do one kind act in his name... donate a little of your time or money to a favorite charity, give a stranger a compliment, or simply pray for someone.

A tough situation gets tougher...

You will see that as I post these historical email updates that the situation changes slightly, and I get a much better feel for what is actually being said and alluded to in some of these doctor visits. The amount of information is tough to deal with because they still speak in medical field vocabulary, so you find yourself trying to re-explain things in ways that help you understand better...

Ed died on Sunday night (09NOV14) very unexpectedly. We were really hoping he could hang on until Allyson got through the appointments she needed to later that week. It just wasn't meant to be...so Allyson flew up to Michigan Monday morning and we put off all followup appointments until Friday of that week. This is what I sent my family that week:

I really appreciate all of the emails and texts that you guys have been sending to Allyson and I over the last week…you would be surprised how good it makes us feel to know you are all thinking about us…

Ed Funeral: There will be no traditional funeral so don't worry about keeping space in your schedules for later this week. They are going to do something small at the house on Friday, and then do a “Celebration of Life” later this year. This will be something very similar to what they did for Pat Gahan since she died before the holidays and didn’t want a huge number of family/friends to travel across the country with so much other stuff going on. They will likely wait until this summer and do something at the beach (which is where most of the Kearney family descends on together anyway). I know some of you have asked for where to send flowers, but Linda prefers to receive no flowers. Instead, she wants people to make donations on behalf of Ed to your favorite charities.  Ed was cremated on Monday morning, so Ally did not get to see him in the end, but she wanted to remember what he looked like before anyway…not the shell of the man that he had become over the last year.

Allyson update: She put off her consultations with the geneticist and medical oncologists until Friday of this week. She will fly back to Charlotte tomorrow (Thursday), and then sees both doctors on Friday. We’ve had travel plans to head to Charleston for the weekend for a long time, and I think we are going to follow through with those to get away and be somewhere else for a little while. It will give the kids a chance to swim in the hotel pool and we’ll have fun with them through the weekend. They may even start the chemo on Friday, but she’ll need to have a port put in so she can receive treatments chemo via a port under her collar bone over the long haul. She doesn’t have good veins for any long term needle use into her arms. That procedure will likely happen early next week or shortly thereafter.

I guess that is it in a nutshell! I’m flying solo with the kids while she is up in Michigan and that is going fine. Our network of friends and family is checking in on us and making us dinners here and there, so I just need to focus on homework for Grayson and nebulizer treatments as both kids have respiratory illnesses going on . Thank God I’m not dealing with fevers on top of that!

Original Diagnosis - Invasive Ductal Carcinoma

The original diagnosis - Allyson found a lump around the time that Ed and Linda made the trip to Myrtle Beach in mid-October. After seeing her OB/GYN for a referral, we went in for an ultrasound and mammogram on 28OCT14, where they determined it was probably something worse than a cyst or some other benign condition.

31OCT14 - Biopsy to get tissue ensued and it was sent to a lab for analysis

03NOV14 - Allyson is driving in the car and gets a call from the radiologist that she has breast cancer. This is also Avery's Birthday, Allyson came home immediately so we could call the doctor for a full explanation. This night was ridiculous as we tried to ensure we did Avery's Birthday right and not ruin it with unexplained crying.

05NOV14 - Met with the surgical oncologist to get a full run down of what they think we are dealing with...Below is an email I sent my family on 07NOV14 with more details from that visit:

Hey everyone,

I know I’ve talked to a couple of you about this, but this will be the first time most of you have heard what’s been going on down in Charlotte..

No easy way to lead into this, but here it goes: Allyson found a lump in one of her breasts a few weeks back and needed a referral from her OB to go see a radiologist for a mammogram and ultrasound on it.  During those scans last week, the mass was dense enough that they ruled out the easy and benign stuff, and quickly scheduled a biopsy on the lump. On Monday of this week they called to report that the mass was indeed cancer.  They called her in the car as she was driving instead of calling us into an office, which we were expecting them to do. Not cool at all! That shocking news was followed by an appointment on Wednesday morning with a surgical oncologist, who went into great detail about her type of cancer. There are multiple drivers of cancer growth in different human beings. Some are hormone drivers (like estrogen), and some are genetic drivers (breast cancer gene), and some are driven by proteins. Allyson’s type of cancer has a protein driver called HER-2, and the presence of this protein in her mass means that this type of cancer will grow very fast if left unchecked.

Evidently they classify breast cancer (at the start) by the size of the mass in the breast, and she appears to measuring in at late stage 1. This is good! She caught it early! The MRI she had this morning appears to show a couple other possible concerns, but the doctors believe those areas are of the benign type and that the mass they are focused on now is the only cancerous one. She will have biopsies next week from the other areas of concern that will rule them in/out as something else to focus on. The MRI does not show any evidence of growth in her lymph nodes, which is of extreme importance because if it reaches those nodes the cancer can quickly spread elsewhere.

The appointment on Wednesday was overwhelming, because we were force fed a huge amount of information in a very short period of time, and when you take into account the emotions of sitting there listening to chemotherapy options and surgical options it was difficult to take everything in. It has taken two of us at each appointment to ensure that we aren't missing anything, and we still come away with questions that the other one can’t answer. So…while it is obvious that she has cancer, we went out and got a second opinion today to ensure that we 1) had a good doctor, 2) were being given all the right information, and 3) to answer more questions that we had after the first meeting with the first oncologist. We actually liked the oncologist today much better, and will be switching over to him immediately. His bed-side manner is much better, and we just felt better in the gut walking out of the appointment today than we did on Wednesday. This guy is very well known, and recommended to us from multiple directions when we started asking around our circles of neighbor/work/gym friends. It turns out he is very good friends with the medical oncologist that we will see next Wednesday, and he had nothing but good things to say about that doctor. We feel like we are in good hands!

Next week, Allyson will get a full genetic workup to ensure she does/does not carry the breast cancer gene. We will also meet with her oncologist to go over the treatment options she has after all the test/genetic/scan results are fully examined. This is not set in stone yet, but it is very likely that we are headed for immediate chemotherapy for at least 4 months, followed by surgery to remove both breasts. She could go with a lumpectomy to remove the growth now, followed by radiation for 6 weeks. However, the risk of radiation at 38 years old increases the risk of other cancers later in life. If she goes the chemotherapy and mastectomy route, she will not have to go through radiation, and she can proceed with immediate plastic surgery to get that rack that I, I mean she, always wanted ;).

The reason for immediate chemotherapy, and not immediate surgery, is due to that protein growth driver called HER-2. The chemo will stop the growth, and even reduce the size of that current growth. It will also stop any other growths throughout her body that we don’t know about (including in the lymph nodes). If she goes the immediate surgery route to remove the growth we are looking at about a 4-8 week delay due to surgery schedules and other pre-surgery issues that need to be addressed. This gives the current mass more time to grow and spread.  By going with chemo now we not only stop any new growth, but we buy ourselves time to jump through all of the other hoops if we decide on the mastectomy route. Like I said, the options can be overwhelming.

The chemo will make her lose her hair. But everybody responds differently to different types of chemo, and none of the doctors seem to think that the type of chemo she needs will make her drop a bunch of weight that she doesn't have to give or lose all of her energy. Right now the plan is for her to work as much as possible through the process unless she really has a difficult time with the chemo. Obviously we are going to try and find a wig maker for her current hair, and Allyson will get to play with a bunch of different hair-dos should she so desire. The hair loss thing is big for her though, and seems to bring the most tears whenever discussed.

Today we also found out about a possible experimental treatment that will give her the drug to stop the HER-2 receptor, but not require the chemo. We’ll find out more about that next week, and while we are excited about the possibility, we aren’t getting our hopes up. Too much has just happened in a short period of time where every test came back the opposite of what we expected or were hoping for…

On top of all this, we can’t even tell Allyson’s mom and dad. Ed came home from the hospital last night with hospice care. This means that he is without medicine from this point forward. He has developed a disease called Amyloidosis, which is a protein secreted by the bone marrow that does major damage to his internal organs. This is the reason why they've been having to drain fluid from his abdomen on an increasing frequency over the last couple months. He can’t keep any food down, and his urine levels are at extreme lows. At this point we are looking at a matter of days, not weeks or months. Allyson’s mom is not dealing well, and we won’t let Ed go to the grave knowing that Allyson is sick. Allyson’s brother and sisters all know about the cancer, and we are hoping that Ed can hang on long enough so that Allyson can get up there to see him on Wednesday night after her important appointments are completed that day. I’m not sure when we’ll tell Linda that Allyson is sick, but it isn't going to be very soon.

Getting the news about Ed last night is more than one person should have to handle, considering everything else that she is going through. Last night was really, really hard…but we are just trying to focus on one day at a time right now, and Allyson is still finding ways to draw laughs from her oncologist at the appointment today.  At the end of the appointment today we were given a percentage that made my day. He said he was 90% sure that Allyson is going to beat this thing, and that is the best news we've gotten in a few weeks.

Eventually I’m going to pick back up on the GratefulGahan’s blog that I started years ago and have since let go. Too many phone calls, and too many emails have already happened, and it is taking a lot of time to get through when that happens. We both still have work to do and 2 kids to raise and we can’t keep up at this pace. By doing the blog we’ll be able to put all the info in one place for friends/family to keep updated with..hopefully that will help us manage the flow of good thoughts and people checking up.  I can’t start that back up until Linda is clued in on what has been happening though. So stand by on that.

I love you guys, and will let you know as soon as we are able about our ability to travel over the holidays, or take guests, or whatever the case may be. I’ll send out another note late next week to let you know what we’ve decided on treatment wise and any other information that has come about. 

I'm back...

But for all the wrong reasons...:(

Up until this point I've been emailing people with news of Allyson's breast cancer diagnosis. Now that everyone within the immediate family knows the situation, I'm returning to the blog to keep everyone updated. This prevents massive amounts of emails and texts as everyone wants to check in on the latest news. While I will post everything to this blog, it does not mean that you have to stop sending encouraging texts and emails to her. Please keep doing that. You would be surprised at how good it can make you feel to receive sweet notes and well wishes at any given moment. So what I will do now, is cut/paste most of the emails that I've sent out about Allyson to give people a chronological background on how we got to this day.