There and Home Again in 25 hours

Home again.

The trip went off quite well! We made it to where we needed to be on each leg of the trip on time and all 3 of us survived the day! First off, I know you are wondering how "flying corporate" was. I tell ya, it's the only way to fly:) Think...driving up to a small scenic airport, waiting in a nice room with fresh coffee, walking out as the sun rises and boarding a clean spacious plane that seats about 20, large leather seats with at least 3 times the leg room, and a smooth 45 minute flight. No check in, no taking your shoes off and being herded through metal detectors, no delays! It was just fabulous and we are incredibly grateful to the kind people from Corporate Angels for arranging the flight and for the Corning Jet that donated the seats.

We were taken by a "air bus" from Morristown NJ to Manhattan. We grabbed a cab from the drop off point at Madison and 59th to Sloan. We only had to wait a few minutes before meeting with Dr. Laquaglia. Here is a summary from that meeting:
1. Brady's dressings were taken off. His incisions look swollen, but good.
2. All test results aren't back yet, but what has come back shows that what was taken out of the chest was a neuroblastoma/ganglioneuroma mass (translation= both active and mature cells). What was taken out of the spine was tested and was gangliorneuroma (that is good news!)
3. He recommends following a wait and see approach from here on out. This will involve MRIs, blood, urine tests at 3 month intervals. He asked if we wanted to do scans at Sloan or back at Strong. We are thinking of doing them at Strong unless something unusual shows up on them, at which point we will certainly opt for a 2nd opinion at Sloan.

Our conclusion about our Sloan experience is this: We are glad we went there for Brady's surgery. From the research we have read and parents we have talked to, Dr. L is undeniable the best for this type of surgery. However, we are not sold on Sloan doctors to be Brady's oncologists. We fully respect their clinical trials, their cutting edge approach, and their vast experience treating NB. Our issue is that not one doctor took the time to read about Brady before stepping into the room with us. Each doctor gave us opinions based on 2-3 minute question/answer period at the beginning of our appointments. Often times the doctors were flipping through Brady's info on the computer while we were talking. Yes they are busy, but for us the "little fish in a big pond" feeling made us both somewhat uneasy. We are coming to the conclusion that it may be best to have Brady seen at Strong, and use Sloan as a consult if Brady has an unusual scan or relapse.

Since we had come all the way to NYC, we asked to have a brief meeting with someone from the oncology group. We were told we would just meet with a "fellow" since everyone in NB was busy. Imagine our surprise when we walked into the room and Dr. Cheung was standing there. He is the head of the NB department at Sloan and his name is associated with countless studies of NB! He did a brief "background" discussion with us as he hadn't looked through Brady's file. His outlook was much more cautious than Dr. L's. I heard the words "hopefully" "most of the time" and "should" many times in our discussion. Here is a summary:
1. Most of the time in cases like Brady's, surgery is an effective means to stop the cancer from spreading.
2. Hopefully Brady will not have any "late effects" from the chemo he received. Remember, Sloan advised us not to do chemo about 15 hours before we were due to start it at Strong. Examples of late effects are higher risk of another type of cancer and sterility.
3. Brady's tumor involved his spine and Dr. Cheung felt that in cases like this, he needs to be watched more closely b/c of potential neurologic damage if the tumor in his spine grows again.
4. The most shocking thing he told us was this: Apparently, chemotherapy in cases like Brady's can actually cause the tumor to become more aggressive! We were shocked by this as NO ONE told us this piece of info. Quite the contrary we were told that often times Stage III tumors don't shrink with chemo, but the chemistry of the tumor changes. They become more mature (ganglioneuroma), therefore less dangerous.
5. He agrees with the suggestion of Dr. L to follow up with scans every 3 months.

So, a lot of info to digest from today. If you are still reading, thanks for hanging in there! I really like to write about all the details while they are fresh in my mind. I need to have it recorded in my own words and this blog is a great place to do it (but I know the medical stuff is a bit tedious to read!)

Brady was a great sport throughout this whole day. Imagine our little boy hanging in there for; 4 hours in the car, 2 hours on a bus, 2 hours on jets, 3 cab rides, and 2 doctors appointments! All in one day on not a lot of sleep. We did get to walk around Macy's after our appointments, but our Brady boy slept the whole time:) Glad to be home, let the birthday party planning begin!

Surgery Updates

I will be updating under this post throughout the day. Please keep checking back and scrolling down for latest updates.

10:30 am We arrived at 8am and have been waiting since then. Brady is hooked up to IV fluids through his Broviac. We knew that Dr. L had one case before us, but I guess now there are 2 before us. So, more waiting. We are now down in the surgical waiting area. The 2nd case is in the OR and they will let us know when it will be 30 more minutes. Brady is in good spirits despite not being able to eat or drink this morning. He has been playing with one tub of Playdoh for 2 1/2 hours now:) We were so blessed as we awoke this morning knowing that there were already those praying for us. The prayer chain is filled right up, with 3 and 4 people praying at certain times. I will update once he goes in...
By the way, Brady is wearing his bunny ears and hospital gown!

Noon update: Brady was just taken back to surgery. He did so well waiting all morning, but then at about 11am he started to get very upset. He didn't understand why I wouldn't give him a snack. It was very heartbreaking and frustrating at the same time that we had to be here so early. Matt took a walk in the pouring rain back to the Ronald to bring Brady's stroller and stuff back. We have a pager and are expecting updates every 2 hours. The first hour of surgery will involve hooking up the stimulators that will be used to test nerve function during the operation. Prayers needed!!! I feel peace but already am missing my sweet boy so very much. It was hard to hold him and hear his little voice and know I wouldn't again for a while. As I sit and watch the rain pour I just keep singing the chorus "Let it rain, let it rain.
Open the floodgates of Heaven, Let it rain."

1:50 We just got our first update. Sounds like they just began the actual surgery. The first hour was getting the stimulators set up.

3:45 Just got our second update. Brady is doing fine and stable. The person on the phone said "Dr. L has started the approach." To which I said "what does that mean specifically he is doing." She answered "it means he is doing whatever he told you he was going to do." That is our update. She also said that the neurosurgeon is going to come in and take a look at the spine. We are praying for the possibility that he might be able to access the spinal section.

5:10 Big surprise. Apparently surgery is almost over. Right now we are waiting to speak to the surgeon.

5:27 Miracle on 68th street!!!! Praise God!!!!!!!!!! Just spoke with Dr. L. Surgery was successful. The large tumor in his chest is completely removed. More amazingly, Dr. Bilsky the neurosurgeon was able to remove part of the tumor in Brady's spine. No way to know if he got all of the spinal tumor because of the angle they were working with, but it is a miracle he got any at all. An even bigger miracle...they are NOT going to transfer Brady to the intensive care unit...they are going to try and remove the ventilator and have him breathe on his own. That means he can recover in the regular unit here on the 9th floor. The doctor even said his chest tube could come out as early as tomorrow. This is a MIRACLE indeed! We are over the moon and can't wait to see him. Please keep praying, but know that our prayers have been answered!!!!!

8:45pm Still in recovery with Brady. He is hooked up too many tubes and monitors. He is breathing on his own. Obviously in pain and swollen, but otherwise looks just beautiful! We are stuck here until a bed opens up on the 9th floor. No complaints from this mommy and daddy!! "Every blessing You pour out I'll turn back to praise!"

A Better Day

We arrived our appointments at 9am. We waited from 9 until 10:45 and then got to see Dr. Laquaglia in between his two surgeries for the day. He basically just started describing the surgery. Within the first minute I heard his say "major, life-threatening surgery." That is the scary part... He will be accessing the tumor from Brady's right side, without having to collapse his lung. The tumor encompasses Brady's aorta as well many nerves to the spine. For that reason they will be monitoring his neural activity with stimulators throughout the procedure. There is a risk for paralysis, but Dr. L said that he has never had it happen. He does about 100 of these types of surgeries a year, 10 of which are chest tumors, and 5 of those ten are like Brady's. The neurosurgeon will come in during the surgery to see if there is anything he can do to get to the small portion left in the spine, but it is not likely. Dr. L said that the small part in the spinal column could just kind of shrivel up at some point after surgery, we might have to do another surgery, or they could decide to just leave it there and watch it. We were very satisfied with this meeting. Although it is obvious just how busy this doctor is, he was kind and patient, answering all of our questions despite the fact that he was on his way back into the operating room. I told him that we have many people praying for him. He said, "Have them pray for Brady, not me." I laughed and told him that we pray for Brady and everyone of "his team."

After that meeting we went and had lunch and then got a call on my cell that the neurologist was "waiting for us." Imagine that, we kept them waiting..ha! She was a very nice doctor who just wanted to assess Brady's functioning before the surgery.

After that appointment we decided to walk to Central Park and do the carriage ride. It was a long walk (of course I didn't have sneakers) but a beautiful day! Brady loved riding in the carriage and had fun saying "Hi lady" or "Hi dude" to the people walking by. His bunny ears on top of the baseball hat got him many smiles:) We are now back in the room getting ready to pack up and head to the airport. I'm going to do Brady's flush, dressing change, and get him ready for bed here so we can just pop him into bed when we get home. He is an amazing boy and we have really enjoyed our special time with him.

Tough Day

I can't really tell you all how frustrating today has been. All optimism left me hours ago, and I guess I'm just downright tired, grumpy, and discouraged.

Here was our day:
8am Arrived at Sloan at which time we were supposed to start giving Brady contrast to drink for his CAT scan
8:00-9:30 Waiting
9:30 Finally got contrast, Brady wouldn't drink it. They had to put a tube down his nose into his stomach and put in all 8 oz of contrast/juice. Then pulled tube out.
9:30-11:30 We were told the scan would be delayed because you have to wait 2 hours after contrast. We also learned that because the scan was delayed, that we wouldn't be able to meet with Dr. Laquaglia today because he needed the scan first, and he was headed to surgery.
12:00 Finally had the scan. It lasted about 15 minutes. Brady woke up really well and was starving. Keep in mind he hadn't had any food all day.
12:00-4:30 We waited for 4 1/2 hours to meet with the oncologist (Dr. Kramer) and the neurosurgeon.
4:30 Met with Dr. Kramer (the oncologist). We have waited weeks for this appointment. It lasted about 10 minutes. Brady was tired, we were tired, Brady was grouchy. She basically told us that with his type/stage of tumor that it would be treated with surgery. We felt rushed, didn't have time to ask a lot of questions, and honestly were really let down about this meeting. She was very nice though...She ordered a 24 hour urine collection. They put a urine bag with a huge tube/bag attached to collect Brady's urine until tomorrow morning. He was VERY upset/tired...still no nap.
5:00 We met with Dr. Bilsky the neurosurgeon. He told us that he WOULD NOT be participating in the surgery to remove the part of the tumor left in the spine. He explained that because Dr. Laquaglia's part of the surgery will be very long/involved (removing the large tumor in Brady's chest) and because he will be going in from the front, that to have to flip Brady and go in to remove the spinal part would be too much surgery at this point. This was a big let down for us. This means we will not get the full-resection that we hoped for. Brady will come home with that part of the tumor in his spine. We aren't sure if they will just leave that part and watch it, or if they will test what is taken out of his chest and then determine if it is aggressive enough to warrant going back in.

6:30 pm Back to the Ronald where Brady promptly had diarrhea and we had to take off the urine bag...so once again we won't have his HVA VMA levels. We had pizza in the basement with many of the other families. There are so many people here, so many children suffering. I'm not sure if I will ever be able to fully describe how hard it is to see what we are seeing here...please be praying for all of these families.

So, today we accomplished a CAT scan and two brief meetings in 9 hours. Matt and I are discouraged I guess and maybe had too high of expectations about today. We are meeting with Dr. L at 9am(I'll believe it when I see it) and a neurologist at 10am to assess Brady's motor skills right now.

Brady was a very good boy considering. He wore his bunny ears throughout the day and of course everyone thought he was adorable. Our flight home tomorrow is in the early evening which will put us home kind of late. I will try and update tomorrow after our appts, but we are hoping to do a carriage ride in Central Park before we go.

Pray for me to have restored optimism...His joy comes in the morning!

Family Time

We had a great night together with my brother and his family. Together with their two girls we had 6 kids under 2 1/2 in the house...party!!! It's so sweet to see the way they love and play with each other. Times like this remind me that time with family is such a precious gift. We probably won't all be together for quite some time and that breaks my heart. Hopefully our next get-together will be a 2nd birthday party for the triplets :)

I have a ton of packing and organizing to do tomorrow. I have all of the insurance documents in order so I think we are all set. In two more nights I'll be writing to you all from Manhattan...

I continue to pray daily for Dr. Laquaglia the surgeon who will be operating on Brady. From everyone I have talked to he is a wonderfully humble man. He is able to operate on tumors that other doctors call inoperable and often do complete removals. He performs several of these surgeries a week, offering a chance at a cure for these children. I'm so thankful that God has opened the doors necessary to get us to Sloan and to Dr. Laquaglia. I'm actually looking forward to meeting him and hearing his plan.

Answering Your Questions

Today has been another day of insurance headaches. Here is the bottom line at least how I understand it today: The doctors we are seeing at Sloan DO participate in our insurance, however we have to seek prior authorization for procedures done on an out-patient basis because we are technically traveling "out of network" for treatment. Once Brady is in the hospital, all care will be covered without having to do this process. So, for all appointments and tests next week I have had to call separately to our oncologist at Strong and request that they will out a form documenting medically necessity for whatever the procedure and then send it to the insurance. The insurance company then approves it and sends the approval on to Sloan. My suggestion? Once a child gets a cancer diagnosis, someone should authorize all treatment, scans, and tests that bring that child closer to a cure. There would be no reason to want frivolous testing done on your child, so it seems this system would be cost effective for everyone involved. Why should we all waste so much time calling, faxing, and filling out paperwork when it is ridiculously obvious that my child is sick and needs this treatment to live. Sorry, I needed to get that out to a willing audience:)

I also found out that Brady will need CT scans done under anesthesia while we are there next week. Apparently they want areas done that weren't done at Strong on Mar6th. So, we are squeezing three appointments and CT scans into our 1 1/2 days of time available. It is going to be difficult to have Brady with us, probably grouchy and tired from anesthesia and be able to focus during these appointments. We both want to be at all appointments, so we will have to make it work!

Now to answer the questions posted yesterday:
1. Any news on getting approved to see our "doctor of choice?"
I think I answered this one above. Things are falling into place, but this is still an area for prayer.

2. How are the other triplets handling Brady being sick?
Eli and Cara are handling things so well. The toughest part for them has been the times when Matt, Brady, and I have been away. Our parents help out a lot which is wonderful, but also it is confusing to them to have so many adults in charge! Cara certainly pays attention when Brady is getting his tubies flushed or dressing changed. She doesn't like when he cries and will come next to me and pretend to cry herself. Eli is quite oblivious to everything going on, he is a happy-go-lucky type kid. Other than that they treat each other much the same as always. Brady is actually starting to bully Eli a little. He loves to wrestle, Eli doesn't, so Brady crawls around after Eli and tries to tackle him. Eli justs runs the other way!

3. How long will the surgery be?
We won't know this until after the surgery! I think Dr. L will give us an estimate next week, but I have heard that his answer will be "it takes as long as it needs to." From other parents I have spoken with, Dr. L is meticulous during surgery and peels away cells one by one to make sure that he gets all he can. His goal is always a complete resection (removal) of the tumor. I have heard some surgeries that have lasted only 3 hours, some as long as 12.

4. Is Brady's hair falling out now that it is buzzed?
Actually we think Brady's hair is starting to grow back in. He never lost his eyelashes which made mommy so happy! It seems as though he has some new fuzz coming in on that cute head of his. I'm not sure how long it takes to come back fully after chemo.

5. Will he need more chemo after surgery?
The goal of surgery is to achieve NED (no evidence of disease) status. We will have to repeat the MIBG scan after surgery to see if any NB lights up. If not, then we achieved NED, if so, then we decide what to do next. We will have to rely on the advice of the doctors at Sloan and our own research to decide what to do next. We are always prayerfully considering the best path to take. NB is an unpredictable and scary disease. Relapse is VERY common even after achieving NED. We are willing to be more aggressive with treatment now in order to hopefully lessen the chance of relapse. That might include more chemo.

Thank you to all who submitted questions. If you ever have more, please feel free to ask. We hope to raise awareness about NB through Brady's story and want everyone to learn as much as possible about this disease.

I need a secretary!

What exactly happened today? Days are passing by one by one, and we don't seem to be getting anywhere!!! I called Sloan this morning to see if they received the fax yet, they hadn't. They told me that they already had called Strong and that they were working on it. Seriously, how hard is it!!!! Short of driving the papers to NYC myself (which I did consider) I decided to take a deep breath and focus on the insurance stuff. I spoke with the insurance person at Sloan who told me approval through our insurance was pending. He gave me a reference number and told me that the insurance company would be calling. Given that very few things ever go according to plan around here, I decided to call my case worker and check up on what the rep at Sloan had told me. Come to find out the reference number he gave me was a number related to a claim from one of Brady's stays at Strong...huh? The case worker was stumped as to how/why he gave me that number. She gave me a link to the authorization form that needs to be filled out and I immediately called Strong and our wonderful NP is on the job. She is fantastic and when she says things will happen, they do. Progress today?....I guess a little, but I feel no closer to Sloan than I did yesterday. It's funny to want to go somewhere so badly, yet the thought of actually going there scares me beyond belief. It's weird because the last time Matt and I have been on a trip is when we went to NYC with friends when we were first married, before kids! Needless to say, this doesn't feel like a vacation!

So, faithful friends, please keep this process in your prayers. I just keep praying that God will continue to open the doors necessary to get Brady to NYC. I'm starting to pray daily for the surgeon, Dr. Laquaglia. I have heard that he is a man of faith and that he gives all the glory to God for what he is able to do surgically. Hopefully tomorrow will bring news of some progress! One more thing, Brady has an appointment next Wednesday at CP of Rochester to start physical therapy. We are hoping to get in a few sessions before we go.

Finally a Reply from Sloan!

Update: Brady's blood counts are back up, with the exception of his platelets. He doesn't need the GCSF shot anymore...horay! Still waiting for a call back from the doctor to discuss her conversation with Sloan...thinking she might call tonight.

I asked over the weekend for prayer regarding a response from Sloan. Prayers are answered! Our oncologist called this morning to tell us that she heard back from their office. The next step is to organize paperwork, scans, and insurance information. Apparently their doctors want all of Brady's info in a certain format. This process will take a few days, then all info will be sent down there. Our doctor asked what Dr. Laquaglia's surgical schedule looks like in the coming weeks. The office person thought maybe the end of March would be a possibility. So I'm setting my sights on about 3 weeks from now. Matt had asked the doctor how she thought the surgeons would access the tumor. Our doctor thought maybe it would involve collapsing Brady's lung in order to get at the mass in his chest. Then of course a neurosurgeon would need to be involved to get the remaining tumor out of his spine. This leads me to think that our trip will be at least a few weeks.
Of course worries about travel arrangements, time away from home, and organizing help with the kids comes to my mind. I have emailed a group called Corporate Angels who "donate" extra seats on corporate jets to cancer patients who need to fly to places for their treatment. They can only work on getting you seats a week or so in advance, so we have to make other arrangements with a commercial airline once we get an appointment. Then we contact them and see if there are seats available through their organization. Matt and I are thinking that we will both go down with Brady and stay until his surgery is complete. Then we will take turns flying home to be with the kids for as long as he needs to recover.

I know that with prayer these specific needs and concerns will be taken care of. We serve an awesome God, and as my new favorite praise song says, "He can move the mountains!"

I'll update later if we get any more info, we are waiting on catecholamine and blood work results!

We're Home

We arrived home at about 3:30pm!!! Brady tolerated the chemo so well again! No nausea or vomiting so far. Brady took a nice nap all the way home. His hair had been falling out all day, all over the place. We decided to just buzz it into a really short brush cut (almost shaved). So, it's gone and we are moving on...

We had many consults with different doctors today. Here is a summary:

1. Neurosurgery came in and looked at his back incision. Everything looked good, his reflexes are better than before surgery. He is continuing to amaze us by doing new things all the time. Some are just subtle differences in the way he moves. Other times he just seems more daring, like trying to stand for a second independently.

2. The Physical Therapy department came in and we discussed what options there are for treatment for Brady's gross motor delay. There is a pediatric PT who works at a Strong PT clinic that is an option. We also contacted CP of Rochester and discussed their facility. Early Intervention is still an option as well. So we continue to try and figure out what will best suit Brady's needs.

3. We got the results of the final histology report from the tumor. This test came back negative for chromosomal defect. Basically, it is another plus in Brady's "favorable" column. This was BIG news! Praise God!

4. We had a detailed meeting with the oncologist. Today I was finally ready to see the cancer on the scans. She brought in a computer and showed us the MRI from the day of diagnosis. It was absolutely shocking to see the tumor and exactly how much his spinal cord was being compressed. If you think of his spinal column like a circle, the actual spinal cord itself was a tiny dot just pushed way over to the side of the circle by this tumor. We also were able to see the mass that extends into Brady's chest wall behind his lung. She compared the size of that mass to a golf ball to plum-size. Until today I just couldn't bring myself to look this disease in the face. I'm so glad I did today though, as I feel so much more knowledgeable about what we are dealing with.

5. We have appointments for a repeat CAT scan and MRI on March 5th at 8am. These will be done at the same time under general anesthesia. These tests will show how the tumor has changed due to chemo (We're praying for BIG change!) We will find out that evening or the next day the results of those scans.

6. Our oncologist has contacted Dr. Laquaglia at Sloan Kettering (he is the leading NB surgical expert). We are waiting to hear back, but the goal is to take our two scans down to NYC the week after they are done and meet with him. We aren't sure yet if surgery will happen in that same trip, or if it will be scheduled a few weeks later.

So, there is a lot to process today. I really like days like today though, I feel like we are getting somewhere. A week from Friday we will have our answer about what the 2 rounds of chemo have done. Our doctor is hopeful that the chemo and the upcoming surgery could be enough to get rid of the cancer, but also cautioned us that further chemo/surgery may be necessary.

My friend from New Mexico is flying in tonight to spend a few days with us. It should be a breath of fresh air for all of us and hopefully a chance for some fun!

God continues to faithfully hold us in His hand, I hope it is crystal clear that He continues to work miracles in Brady's life everyday!