Wed, Aug 20th - Wed, Aug 27th - Cole continues to feel better from his recovery from Pneumonia, however now he is beginning to experience belly pain and the official diagnosis is that he has developed Pancreatitis. Apparently Pancreatitis is a side effect of one of his Chemo drugs. He is given pain medicine in an attempt to relieve some of his pain, however this causes severe itchiness over his entire body and lasts for hours. This is a new side effect for him. They attempt to relieve this itchiness with other meds, but unsuccessfully. This goes on each day for about 3-4 days, trying different pain meds each time. However, it was not until about the 4th day of this and I believe 5th different pain med that they found one that did not cause itching. By the next day the pain had subsided and the Pancreatitis was nearly gone.

Over this time he had begun to have fevers and these did not go away until the 26th. So more testing began and on top of numerous blood tests, I believe we used just about every type of imaging they have. He had an abdominal sonogram, abdominal CT scan, abdominal MRI, CT scan of his chest, echo cardiogram and x-rays. All looked normal except for some spots on his lungs that they believe is either a fungal infection or a bacterial infection. Either way his PORT will now need to be removed and they will also perform a BAL (bronchoalveolar lavage) to determine the type of infection in the lungs.

On Tuesday they tested his bone marrow and CNS (central nervous system) fluids and reported the results to us late on Wednesday. It was not the news we wanted to hear. Leukemic cells were still present in the CNS, however the bone marrow was still clean. With the bone marrow still being clean, it will allow them to focus solely on the CNS for a short bit. So they will be starting him on a new Chemo drug on Friday and continue it over a course of 3 weeks.

This was obviously not the news that we wanted, however we are still hopeful. If this latest round of chemo is successful, then they would follow it with another 3-4 week round of chemo and then prepare him for a bone marrow transplant.

Cole is handling all very well. He is an amazingly strong kid! When he is feeling well, you would never know that he has gone through so much. He is constantly his fun loving, joking self. Always making the doctors and nurses laugh and warming our hearts with his infectious smile.

His battle was so appropriately named Cole Strong and he is living up to it! His strength is what will get him and us through this illness. Thanks again for all of you support, thoughts and prayers!

Cole Strong in his hospital room

Denise and Cole

Cole and Chris

Thurs, Aug 7 - Tues, Aug 19 - The last couple of weeks have had some highs and lows. However, one of the things that I learned the first time that we went through this was not to get to high on the high moments and not to get too low during the low moments.

Madisen, Michael and I (Chris) arrive in Boston and the family is together again for the first time in a couple of weeks. The kids are all happy to see each other again and also to see their mom.

Cole quickly shows off the hospital amenities (play room, resource room, outside courtyard and outside garden) to his siblings. Each day, Michael and Madisen are enjoying some good quality time with Cole as he is feeling mostly pretty well during their visit.

During their time in Boston, Michael & Madi also get to experience a bit of Boston. Michael & I took a Fenway park tour and did a little site seeing around the park. On another day Denise took them on a Duck boat (amphibious vehicle) tour of the city by both land and water (Charles River). They also went to the Science Museum and Faneuil Hall. This made for a good end of the summer for both of them. This trip also gave them a good sense of why we are here and what the experience is like.

On Wed, the 13th, Denise, Michael and Madisen return to Florida to get ready for the new school year. This same day Cole starts not feeling very well. On Thursday, my sister-in-law Yvonne arrives to assist for the week and while Denise is gone. By Friday, Cole is in pretty rough shape, as he has developed a slight Pneumonia and his body began to retain fluids. He had some pretty high fevers, even on Tylenol. By now they have him on some pretty broad spectrum antibiotics, fluids, etc... as he has basically no immune system to help fight off any infection. The doctors are not sure of the source of the infection and discussed his port as a possible source. Some conversation then ensued about possibly removing the port. We certainly do not want this to happen!

Friday evening was very rough and he receives visits from several doctors, including infectious disease and ICU doctors. He came very close to being transferred to the ICU floor Friday evening, as he had pretty significant fluid build up in his body and lungs. They then started him on diuretics in order to remove the excess fluids and monitored him closely, ran many tests and a few chest x-rays. Saturday was a hair better. Cole showed a slight improvement and the current oncology floor felt they could handle him there. They also feel that the Port is not the source of the infection and can remain, whew! Sunday showed more improved and his fever had begun to break.

By Tuesday he had begun to feel much better. He was able to get out of bed and go outside (by wheelchair) and enjoy some fresh air. This was a wild ride and neither of us had gotten much sleep over the weekend. Monday and Tuesday nights were a breath of fresh air, as both of us were able to catch up on some much needed rest.

It was great to have my sister-in-law here to help during this time. She was able to handle some of the basic, but necessary items like laundry, shopping, meals, etc... while she is here. Thank you so much Yvonne!

Cole also received a brief visit from his Grandmother, Aunt Tamara, Aunt Sherry and Cousin Shelby. Although he wasn't feeling well at all during their couple of hours here, I know he enjoyed seeing them.

Tuesday the 19th is Day 26 of his current treatment plan. He is done with Chemo for this cycle unless testing is delayed for some reason. Once his blood counts recover enough, they will again test his bone marrow and CNS (Central Nervous System) for Leukemic cells. This typically takes place between the 28th - 35th day. The doctors will make this call based on his blood counts and they will also want to make sure that any respiratory issues are completely gone before they give anesthesia for the tests.

It goes without saying that we are anxiously awaiting the results of the upcoming tests and I will attempt to post these results as soon as possible for all concerned. These results will determine our next course of action.

We are very pleased with the level of care he is getting here at Boston Children's Hospital. The quality and quantity of staff, the group think and approach to his care is quite impressive and comforting. It has been very hard to be away from home, but we are so very glad that we decided to come here!

We also wanted to say thank you to all of his/our well wishers out there. Your thoughts, comments, word of encouragement, posts, support, etc... are all very helpful. THANK YOU!!!

Family fun!

Mike at Fenway

Mike and I in front of the Green Monster

Mike, Cole and I selfie

Mike and Cole enjoying a craft project

Me and the Cole man

Aunt Tamara, Aunt Sherry, Cousin Shelby and Grandma Gail visit Cole

Cole and our favorite nurse Becca

Cole and Aunt Yvonne

Sun, July 27 – Wed, Aug 6 – On Friday the 25^th Cole started a new 30 day chemo plan with the hopes of ridding Cole of the stubborn Leukemic cells still residing in his CNS (Central Nervous System). Cole has been very lethargic since our arrival to Boston, however on Tuesday that began to change. He began to be awake more and wanting to get up and talk walks, go to the play room and more. This is a good sign and a relief to us. His energy is getting better with every subsequent day.

On Wednesday, we are able to check Cole out of the hospital for a couple of days. We need to return him on Friday morning. We bring him to the Ronald McDonald house and he is able to get a few good nights’ sleep and allow him a sense of normalcy for a few days.

On Thursday, I (Chris) return home to Florida to handle last minute items in preparation for our Cole Strong 28 Baseball Benefit tournament. I come home to find that my good friends have handled most everything already and I have only a few things to do. This allowed me to spend even more time with Michael & Madi. We are so very fortunate to have such great friends.

On Friday, Denise and Cole check back in at Dana Farber and then are admitted to Boston Children’s Hospital as planned. Cole is assigned a room and this time we are in the new wing where the rooms are better equipped and larger. This is a much more comfortable situation for both of them.

At home, Madi, Michael and I go to the mall to get some last minute school shopping done. A little later in the evening, the organization team for the tournament meets at my house to gather all auction items and to discuss any last minute items. We are in good shape! The only area of concern is the weather. Rain is in the forecast in a pretty big way and baseball and rain don’t get along!

Saturday morning is here and our organization team and other volunteer arrive at the field at 7am. It had definitely rained pretty heavy throughout the night and the fields needed some work. The guys got to work on the fields right away and they begin to take shape. Other volunteers are working on concessions, tents, tables, auctions items, registrations desks, etc… There was a lot to do and so many pitched in to do a great job.

The games are about to begin and our daughter Madisen sings the national anthem. Then I welcome all to the fields, thank all who made the tournament possible and Cole announced “play ball” via Skype. Cole was able to watch throughout the day from Boston via Skype. This was amazing, as he was obviously unable to join us in person. It began to rain again, but soon after went away and the rest of the day was beautiful. The concessions are doing well, people are bidding on auction items and shirts and bracelets are selling well. Before I knew it, the day was over and I was shot! Everything went great. We only needed to go out and buy more water and Gatorade for the next day. After this long day, me and the kids went to my friend Ed and Marci’s house and basically collapsed in their pool.

Sunday morning arrives and we are again at the fields at 7am. The fields are much worse this morning. County officials are about to close the fields on us and we basically convince them that we have enough volunteers and equipment to get the fields playable. They allow us to try and a couple hours later play begins. We shortened the games so that all will get their games in and all are happy. The rest of the day again is very nice and all seem to be having a great time. We again Skype Cole in and he gets a virtual tour of the event, as we were able to Skype from an iPad. Everyone is saying hello to him and wishing him well. It was pretty special. The last games of the day are upon us; however these games are cut short due to lightning. Finally, this event is over and what an amazing event it was. All that is left is the tear down and clean up, and plenty of volunteers are here to assist.

In Boston, Cole gets his treatments over the weekend and continues to feel well with a decent amount of energy. In my absence, Denise’s sister Michelle, brother in-law Steve and their son Bryce (2 months older than Cole) come to Boston to assist. Cole is having a great time with them. Before you know it, he is playing PlayStation baseball with Bryce, laughing and having a good time. It was great to see. Denise is also enjoying the help and the great company.

On Wed, Michael, Madisen and I flew up to Boston. They’re excited to see Cole, Denise and a little bit of Boston. We arrived around noon, dropped off our things at the Ronald McDonald House and then head over to the hospital to see Cole. He looks good and is feeling good as well. It was great to see the kids all together again.  Madi and Mike then get a tour of the all of the fun places and things to do while in the hospital. Shortly after, Cole is off to the play room for a good game of air hockey against his brother.

Cole continues to feel pretty well. He gets fluids and Chemo at predetermined times. His ANC counts (value that tells us about his immune system) are very low, which is to be expected at this point in the treatment plan. We are at day 14 of 30 of his current plan and Cole will not be tested for Leukemic cells again until around the 30^th day. So we are basically day-to-day for a couple of weeks and hoping and praying for positive results. In the meantime we will enjoy as much time with him while he is feeling pretty well.

Our Baseball tournament was an unbelievable experience and not for baseball reasons, but because of the outpouring of support. For the great friends that were made, the laughs and the cries and for the feeling that you get when the community you live within stands up and basically wraps their arms around you. I have no way to put that into words that would properly define how that feels.

I can’t thank enough some dear friends that made this weekend possible; The Lashley’s, Ruckers, Soto’s, Levine’s, Esgro’s, Norton’s, Strikowski’s, Disisto’s, Hodge’s, Applebaum’s, Shiflet’s, Gurevich's and the countless volunteers that helped to make this past weekend the incredible success that it was! I also want to thank Jim Henneman of the Palm Beach County Parks Department for keeping the fields open for a couple more days and allowing us to have this tournament, the West Boynton Little League for welcoming us on their fields and allowing us to use the equipment and supplies to get the fields in playing shape, to all of the umpires who volunteered their time to umpire our games and to all of the very generous people and companies who donated items for our auctions.

I also want to thank all of our corporate sponsors: The Law offices of Berman & Berman, Seaside Bank, HammerHead Motors, Robert Hodge/ProBall, Simon Orthodontics, Office Depot Foundation, Brownie Brittle, Boca Executive Realty, The Materetsky Financial Group, Lissauer Dental, Mandel JCC of the Palm Beaches, GlobalServe, Edward Jones, Agliolio's, Walker Construction, Ellen Flaum LCSW, Falk Prosthethics, Chicken of the sea, Benik Baseball, Associates in Childrens Denistry, The Neighborhood News, Wizard Creations, Yale Sports Enterprises, Dr Fara Bender, Dr Katie Rand, Carolyn's Creations, Rawlings, West Boynton Little League, Alabama Joe's, Home Depot, Anixter, Ucube, Strathmore Bagels and West Boynton Travel Baseball League.

Here are a few links to the terrific press we received this weekend.

Link to a news story on CBS12:

http://cbs12.com/news/top-stories/stories/vid_18216.shtml#

Here is a link to a video recap of the tournament:

http://youtu.be/de8mphicX90

Great article in the Sun-Sentinal:

http://www.sun-sentinel.com/news/palm-beach/fl-cancer-baseball-tournament-20140801,0,1918981.story

Dad returns home

Bryce and Uncle Steve visit with Cole

Cole's team having a mozzarella stick in his honor

Madisen singing the National Anthem

11u Vipers sporting some cool Cole Strong 28 jerseys!

Some great friends that helped make the tournament possible

Michael and Madisen arrive in Boston to visit Cole

Cole and Michael playing a little air hockey