Day 15- Our Best Day Yet

Today is definitely our best day yet. Alex will be discharged to the hotel late this afternoon. Since our hotel is right here on the hospital campus and he is now tube-free it's thought that he will be able to get better rest in his own environment. We couldn't agree more! Not quite home, but a step up from the hospital for sure. No noisy alarms or vital sign checks right when you dose off! The hotel was kind enough to switch us to a handicap room. His spirits already seem better just knowing this phase is almost behind him. 1 week ago today he was a cancer patient facing major surgery with no other realistic options or control of his own life. While we are still awaiting the pathology report on the lymph nodes that were removed, for today, he can begin to feel like he is back in charge of his life. Truly our best day yet.

Day 13

Today is better than yesterday. I think the reality of the road ahead is setting in a bit, which in a way makes each little accomplishment that much sweeter. The pain management plan for Alex is taking shape as some success was found today. Hopefully we can continue to perfect it over the next couple of days so that he can be discharged to the hotel. He is required to wait 7 days after he's discharged before he is cleared to fly home. As much as we are sooo excited to go home and be with the girls again, it's a little scary to think of leaving the safety net of the hospital. However, tomorrow will be a big step. Alex will head back down to the OR in the morning for a bronchoscopy. They will be looking inside to make sure everything looks as though it is healing as expected. Assuming tomorrow goes well, we might be looking at Wednesday for a discharge date. As Dr. Linuti often says, we will be cautiously optimistic!

Two Steps Forward, One Step Back

As a friend recently reminded me, Alex and I are former NICU parents so we should remember & take comfort in the "2 Steps Forward, 1 Step Back" rule, as you are ultimately still moving forward. And Alex's path is more of the 4 steps forward for every 1 step back so we can take even greater comfort. Nonetheless, despite how infrequently they occur, the steps backwards are extremely frustrating at best.

Today's goal was to wean off the epidural and transition to IV medication and pain pills. This began in the morning and by afternoon we were convinced we had another success on our hands. He was walking unassisted, talking easily, and seeming really good all around. At 8pm Alex had walked into his bathroom to brush his teeth (his favorite privilege here) and upon returning to his bed completely froze. Completely. His eyes were huge, he was shaking, sweating, and having muscle spasms all over. One of my saddest moments as there was nothing I could do to help besides call his nurse. After about 10 minutes & some strong medicine, he had returned to a more calm, relaxed state. This happened several more times and he is growing very tired. Each time his heart rate and pulse are racing and he's so stiff I couldn't move him if my life depended on it. Although visiting hours are over, I will be staying tonight as I'm afraid that he won't be able to call for help on his own if another episode arises. The hope now for Monday is to meet with his doctor to figure out a better pain management plan. That plan can't come soon enough for me! Alex on the other hand, while obviously wanting to be pain-free, is still maintaining his graciously patient ways. He is constantly thankful to all who are helping him and still remaining focused on his faith that God will not give him more than he can handle.

"The harder the conflict, the more glorious the triumph. What we obtain too cheap, we esteem too lightly; it is dearness only that gives everything its value. I love the man that can smile in trouble, that can gather strength from distress and grow brave by reflection. 'Tis the business of little minds to shrink; but he whose heart is firm, and whose conscience approves his conduct, will pursue his principles unto death. " ~Thomas Paine

A Great Day

Today was a great day. Alex has been moved out of the ICU and is now in a regular recovery room. Last night he had 10 tubes attached and is now down to just 4! Alex's big accomplishments of the day included eating a bit of real food, taking a long 200 foot walk (assisted but it still counts), and in the spirit of saving the best for last, the chest tube was removed tonight! Without the tube his breaths have quickly grown from short and shallow to nearly normal. He is still kept mostly numb in the mid section. We understand that once the epidural is removed in the next couple days the breathing will likely become more difficult again as his pain will certainly increase. Still, for now he is so grateful to know he can take a nice deep breath!
It has been such a big day, far exceeding any expectations. His temperature has hovered right around 101 since he was transferred to the recovery floor. The staff doesn't seem as worried as me so I suppose this is somewhat normal at this point. A lot of prayers answered today. A lot!

Success!

After a long seven hour surgery yesterday Alex's doctors were able to successfully remove the entire tumor, the stem, and all apparent roots. Alex's mom and I received much appreciated updates from the OR throughout the day. His doctor said he was stable throughout the process and as a surgeon, he was "very happy." At 5:00 we were able to go in and see him in the ICU and all things considered, he looked good {which isn't so hard for someone so handsome :)}. Because he had tolerated the surgery so well & was able to breathe on his own by evening, but had a lot of fluid in his lung, it was decided to begin to wake him up so he could begin coughing to try and get the fluid working it's way out. We had a bit of a set back at this point.

The way pain is now managed with this type of surgery is through epidural. While Alex was still in the OR, he was given an epidural so that as he awoke and the sedation from surgery wore off, the epidural would have his mid-section numb. Unfortunately, Alex's epidural didn't take. As he began to gain consciousness, he could feel everything. Although we couldn't tell exactly what was wrong, it was obvious to Heidi and I that things were going as hoped. Heidi and I were quickly asked to leave and were later told by Dr. Linuti that Alex could feel the incision, his lung, the chest tubes, the catheters, everything! His body was so stiff from the pain that they had to put him under again to re-administer the epidural. After a long & very sad 3 hours, success was achieved and he was finally comfortable and slightly awake-- awake enough to get some good coughs out and even open his eyes a little, crack a slight smile, and give a thumbs up.

The Night Before...

The night before a surgery like this is an interesting moment. It's almost like we're back in slow motion, similar to when we first found out about Alex's tumor. It's been almost 2 months and it's odd how it's still surprising to hear the doctors talk to us about Alex's condition. When Dr. Linuti confirmed the biopsy results this week there was absolutely no reason for me to be surprised as it is exactly what we had thought all along. Still, I suppose some naive part of me was almost hoping he would say that upon further examination the mass is actual a candy coated gum ball and if he drinks this magic elixir it will dissolve and all will be normal again. Soon enough, I know, normalcy will come.

A quick word about kindness that I have to share. There are so many reasons to be overwhelmed right now and overwhelmed we certainly are. We are tremendously overwhelmed by the immense kindness we have been shown in so, so many ways. I honestly could never put into words the vast range of thoughtful, genuine kindness we have had the honor of receiving. The type of kindness that reaches far beyond simple manners & gestures. Here in Boston, the doctors and nurses have been such a comfort and Alex's cousins have been more of a support than I'm sure they realize. Although time has been limited to short visits, those visits have provided such a fun escape from reality that only they could provide. At home, it has come in every possible form-- Heartfelt outreach from our church, friends welcoming our kids into their family lives and even sweating over projects at our home, and of course our family dropping everything to be interim full time parents to our 3 little girls. Most meaningful are the prayers we have been offered. There hasn't been a friend or family member that hasn't reached out to us in sincere kindness and for that, our gratitude is immeasurable. We are truly blessed.

The Plan

Us at Fenway Park

Yesterday was a pretty big day. Alex had more tests in the morning and then we met with Dr. Linuti in the afternoon. The results of the biopsy confirmed that the tumor is non-aggressive carcinoid cancer. We were actually able to watch a video of the tumor which amazed us both. The images showed that it has grown slightly in size and encompasses the majority of his right airway.

The surgery. Thursday Alex will check in at 6:45 am. Thursday is rounds day at Mass General so the OR (there are 190 operating rooms here) doesn't begin surgeries until 9:45 and he is first on the schedule. We've had a lot of questions about the surgery, so below is a description of what will take place. If you're not one for this sort of thing you might want to stop reading here. The procedure for the surgery is as follows: An 8-9 inch incision will be made on Alex's right side. They will cut through the lateral muscle and remove most of a rib. Then, the lung will be detached and deflated. The piece of the bronchial tube where the tumor is attached will be cut out & removed with the tumor. Some reconstruction of the carina may be required at this point. The bronchial tube will be reattached. They will then transplant a piece of muscle from his rib cage to wrap the tube for strength. This muscle is expected to regenerate and lessen the risk of separation. The right lung will be re-inflated and the incision closed. The rib bone will not be replaced as it is thought to be better to not irritate the rest of the area. The bone will apparently re-grow over the course of the coming months. The surgery is estimated to last 5-6 hours. Alex is expected to be in the ICU for a couple of days and in an induced coma until the breathing tube is removed. At that point he will be transferred to a regular recovery room where he will likely be for another week. The recovery times posed to us are the average. Like everything else with Alex, I have complete confidence he will exceed the expectations.

While he is tiring in energy and even a bit in appearance, Alex's spirit is far from it. He has taken this experience and turned it into opportunity. He is determined to visit every historical monument in Boston. We often find ourselves following along with 5th grade field trip groups and having a pretty good time at it! He figures if we are not at the hospital we might as well make the most of our time. Since something about us sadly screams that we are out-of-towners, we are frequently asked why we are here- vacation, work, etc. Alex's standard response now is that he's simply here for some warranty work. :)

Day 2 & 3

Sorry for my delay in posting. It's been a busy, but good couple of days. Thursday Alex underwent bronchoscopy surgery where the doctors were able to see that the tumor is in fact in the exact perfect location. "Perfect" meaning that if it were 2 cm to the left part or all of the lung would need to be removed and if it were 1 cm to the right we'd be looking at reconstruction of the carina. So, HUGE blessing! The doctor was also able to take a sample to confirm that this is a non-aggressive cancer which all arrows are pointing in the direction of. Alex did extremely well, as usual. He was completely sedated and apparently had a lovely nap! The whole process was about 2 1/2 hours and he woke up in a great mood with little more discomfort than a sore throat. I, personally, was so comforted by the doctors and nurses who actually called me in the waiting room from the OR to update me and then also came and spoke with me after. After a several hour nap that day, he was good as new.

Yesterday was a break from the hospital and we had a much needed day to catch-up on our sleep and acclimate to the time zone etc. I'm not sure if it's adrenaline, nerves, or what, but Alex has had more energy than he's experienced in a long time. Last night we had a wonderful opportunity to get together with Alex's cousin and his wife who took us to dinner and a Red Sox game. We had such a genuinely fun time. Alex was so grateful that this was the first time since we've been here that an hour went by that he didn't have a single thought about why we were here.

Monday, we will be back at Mass General for a chest x-ray and meeting with the surgical team to discuss the results of the tests and learn the exact procedure for the surgery on Thursday. So, all in all, we couldn't ask for a better start to this journey here in Boston. We have the opportunity to spend the weekend with family and have comfort in knowing that aside from missing our babies terribly, we are right where we need to be.

Day 1

Started our first day at Mass General bright and EARLY! Feeling pretty jet-lagged, we set out for our first appointment at 6 am (3 am California time!). First, we met with the anesthesiologist, then the nursing consultation, Alex had another lung capacity test, and finally we met Dr. Linuti. (Keep in mind these appointments are back-to-back in different offices on a hospital campus that is 3 city blocks in size.) Met some wonderfully kind people. We both feel very confident about our meeting with Dr. Linuti. He talked with us for quite a while and explained the 3 possible options for surgery. Tomorrow morning Alex will have another bronchoscopy and biopsy. This time he will not be awake so they can safely take a sample of the tumor. The way the surgery is performed will depend on if the tumor is classified as a "typical" or "atypical". We were under the impression previously that all carcinoid tumors are non-aggressive, but some can be aggressive so we need to know for certain which type this is. Friday we should find out the result and then learn the exact plan for surgery.

In Alex's typical positive spirit, he managed to bring a contagiously upbeat energy to the patients in the waiting room and the staff. I honestly think he baffled the nurses and doctors a bit. Dr. Linuti explained that there are really 3 possible options-- one is what we had originally thought, one involves a complete rebuilding of the carina (where the bronchial tubes meet the trachea), and the third involves removing part of the right lung. Not phased at all, Alex simply asks if the least invasive of the 3 is a real option and Dr. Linuti answers, "Sure. It could be. We'll see when I get in there tomorrow." Alex's response: "Well that's great doc. I think I may have the perfect tumor." Perfect tumor? This quietly kind & serious man nods and gives a slight smile in a way that it's clear he's rarely met with such optimism.

Isaiah 40:31 But those who hope in the Lord will renew their strength. They will soar on the wings like eagles; they will run and not grow weary, they will walk and not be faint.

On Our Way!

Well, according to the fancy "moving map" Delta Airlines offers in their seatbacks, we are over 1,000 miles from home right at the border of Minnesota and Wisconsin. I can't tell for sure though because mine seems to be stuck in Spanish mode. :) Thank goodness for Mrs. Giligan's 5th grade Geography lessons! For now, our nerves have subsided a bit as we are having good flights and Alex is feeling better today than yesterday. We actually won a session of the in-flight trivia where you answer Jeopardy-style questions and your opponents are fellow passengers. It might sound silly, but that was honestly quite exciting, at least for me.

Big plus.... Dr. Linuti's office called and confirmed our appointments for tomorrow. I hadn't thought of the possibility of a cancellation on their part until that moment and was suddenly so grateful for the confirmation!

It's Time

Our long month of waiting has passed and the day has finally come. Tomorrow morning at 4 am we will leave for the airport and officially begin the adventure that has been weighing on us for some time now. I won't try to lie and say we aren't a little nerved up today! Amongst the packing, preparing the paperwork, preparing the kids and household, nervousness is definitely taking hold. So, I try to focus on just being grateful we have this opportunity and the knowledge that God is guiding our journey and it's amazing how quickly peace comes. The love and support we have been shown in recent weeks has been enough soul food to fill a giant. You all know who you are. Nothing we could ever say or do could thank you enough for the strength you have given us.