Nov 25th - Dec 14th - Cole has been battling VOD (veno occlusive disease) which is a side effect of all the chemo he has received for about a month now. Currently his blood counts are showing that the VOD has greatly reduced, however it has not translated to Cole feeling any better until the last couple of days. His abdominal drain is still in place, however he was able to have his chest tubes removed about a week and a half ago. 

The last 2 days have been encouraging, as Cole has wanted to leave his room (in a wheel chair) to go to the resource room on the floor or to simply pace the hallways. This is the first time in a long time that he has wanted to leave his bed. This is an encouraging sign, however we are clearly not out of the woods yet as he is still retaining abdominal fluids. VOD is a slow disease to cure and we need to continue to be patient with it. We were hoping that we would have Cole out of the hospital before the holidays, but it is now looking like that will not happen. Hopefully he will be past most all of the VOD over the next few weeks. 

We are now at day +42 from his Bone Marrow Transplant. His Oncology Blood Count numbers all look solid and have seen continual improvement. This is very good news! Day +100 is when doctors give your their full assessment and generally allow you to return home. Day +100 falls in mid-February for Cole. 

Thankfully we will be bringing the kids up for the winter break and we will have the entire family together to enjoy the holidays. The kids are hoping for a lot of snow :)

Thank you all for your continued support. It is so very meaningful to our entire family! 

Cole painting a Christmas tree

Cole and Dad selfie

Cole, Mom, Santa and an Elf

Cole in front of the hospital Christmas tree

Nov 9th - Nov 25th - Well the past few weeks have been very challenging to say the least and filled with both good and bad news.

The bad news; His sore throat and mouth sores were much, much worse than anyone had expected and he also developed a condition called VOD (veno occlusive disease). VOD is where some small veins in the liver become obstructed and cause fluid buildup. So on the 18th he had drains put into his lungs and abdomen. He still has these drains and will probably have them for a little while longer. The fluid buildup has caused some pretty significant abdominal pain and has rendered him bedridden. He is on a slow drip of pain medication (dilaudid) and has a pain button to press for on demand pain relief.

The good news: The new marrow seems to be taking hold and he is now considered engrafted as of the Nov 21st. YAY!!! His blood counts have all been very good and he probably would have been leaving the hospital (but staying in Boston for a few more months) this week had it not been for the VOD.

The doctors are monitoring his VOD very closely, as it is potentially very dangerous. There are elements within his blood tests that tell them how the condition is doing. As of today (the 25th) it looks as if these values have peaked at their highs and we have even begun to see a slight decrease in these numbers. This is what we want to see. I would guess that it will take weeks if not a month or more to completely resolve this issue, but we are hoping that the worst is behind us!

Thanks again to all for your thoughts and prayers!!!

Denise and Cole

Chris and Cole

Cole resting

Oct 27th - Nov 8th - On Mon the 27th, Cole has his Hickman line surgically implanted and we are then admitted to transplant floor for the remainder of the transplant process. If all goes well, we expect to be in the hospital for about 5 weeks. On Tues the 28th, Cole begins twice a day TBI (Total Body Irradiation). This continues until Friday afternoon. He handles this process like a trooper and is ready to trick or treat in the hospital. It is actually a reverse trick-or-treat. This means that anyone entering his room needs to bring him candy and he got plenty. The day before Halloween brought a visit to our floor from a rookie Red Sox pitcher named Drake Britton. He was dressed as Superman and visited and took pictures with all the kids in the transplant wing.

On Saturday and Sunday Cole received Cyclophosphamide, a chemo drug used to wipe out the remainder of his immune system in preparation for the transplant. On Sunday, his brother Michael arrives in Boston and enjoys the remainder of the day with him. Our good friends Art and Renee also came up Sunday and spent the night with us. On Monday, Denise's sister Michelle, husband Steve and son Bryce came for an overnight visit. Thank you all for the support. It was great to have you all here with us.

Around 1:30pm, Michael is brought into the OR for the bone marrow harvest. He is done and in his own room recuperating a few hours later. They take about 400cc of marrow, about 5% of his total marrow. Around 8:30pm, the marrow is ready to be infused into Cole. Michael is brought up to Cole's room and was able to press the start button to begin the infusion. What an amazing moment! Michael is then brought back down to his own room to rest.

Within a coupe of days Michael is feeling like himself again and on Saturday the 8th, he will return to Florida. The rest of the week went well. Cole was feeling great until about Thursday. This is when his throat began to hurt and he began to develop mouth sores. This is expected and is due to the chemo and radiation. Once his white cells begin to recover, then this pain will reside. In the meantime, pain management is all you can do. We expect this will take a week to 10 days to resolve itself. We were warned that the 6th - 14th are typically the most difficult. Cole is fully aware of all and is being his typical trooper self. This kid continues to amaze us!

Thanks again for all of your thoughts and prayers!

Cole in his transplant room

Brotherly love!!!

Cole in our home made Bat Mobile

Cole with Red Sox pitcher Drake Britton

Mike getting ready for his procedure

Mike starting Cole's bone marrow infusion

Mike, Cole and cousin Bryce 

Mike and Cole goofing around

Sun, Oct 2nd - Sun, Oct 26th - Cole received his last dose of Depocyt Chemotherapy and his CNS and bone marrow were again tested. Thankfully both are still clear! The remainder of the month was full of testing in preparation for a bone marrow transplant that is scheduled to take place on Nov 3rd.

In general Cole has been feeling very well. When his counts have been up, he has been able to have some fun. We did the Fenway Park tour, he again went to Faneuil Hall and went to a New England Patriots game!

His brother Michael and sister Madisen took a long weekend to visit Cole as well. I hadn't heard Cole laugh so much in many months. It was very heartwarming to see then together again.

Last week Cole received Cranial radiation because the doctors want to make sure to rid him of any un-measurable remaining Leukemic cells in his CNS.

This coming week he will have a Hickman line installed on Monday. Then he will receive TBI (Total Body Irradiation) Tuesday - Friday. Saturday and Sunday he will will receive Cyclosporine. This is to basically kill off his immune system and prepare him for the transplant.

His brother Michael (the Bone Marrow donor) will fly up on the weekend before the transplant and on Monday will donate his marrow. Michael will probably only need to be in the hospital for a day or two, but we need to be prepared for him to be in for up to a week. So he will probably stay the week no matter what.

Once the transplant takes place, Cole will need to be in Boston for about 100 days. The first month or so in the hospital and the next 2 months he needs to be nearby.

We are obviously not out of the woods yet and are still rightfully nervous about this process. I am sure sure we will be feeling better about things once we are about 3 weeks into the transplant process.

We are so very thankful for all who have been helping us though this journey and for all the thoughts and prayers!

Cole at the hospital

Cole and Denise at the park

Michael, Cole and Madisen at Fenway Park

Denise and Cole at the Patriots game

Cole with the Patriots Cheerleaders

Fri, Sept 19th - Wed, Oct 1st - Before I get into the last couple of weeks, I wanted to let all know that we got word on Wednesday, Oct 1st that there is no sign of Leukemia cells remaining in Cole's CNS. This clears the way for a bone marrow transplant for sometime within a month or so. This is the news that we have been waiting for!!! 

Now for the last few weeks: We are now settled in at our friends house and getting used to our new surroundings. They have a beautiful 90 or so year old home in a very nice Brookline neighborhood. It is just a short walk to the local Shaws/Star grocery store and a number of local restaurants. 

We have appointments on Mon & Tues at the doctors to check his blood counts and other. On Wed the 24th Denise returned home. Before she flew out, we all went to Faneuil Hall/Quincy Market for some lobster rolls, clam chowder and other great food. Then we took a walk over to the North End for some goodies from Mike's Pastry and Modern Pastry. 

Denise returned home and our kids are back to their normal routines. Meanwhile, Cole and I are exploring the local Brookline neighborhood. We really like this one restaurant called The Publick House and ultimately wind up going their 4 or 5 times. They love Cole there and offer him a job, LOL. The last time we were their, they made a special order Root Beer Float for him. This was very cool, as they actually went across the street to get the ice cream for it.

We are really enjoying our time in Brookline and getting to know Fern and Jack the owners of the house where we are staying. It have been a pleasure staying there, however it has been 2 weeks and we need to secure our own apartment. The rental market is tight in the area near the hospital, but ultimately wind up finding a nice one bedroom apartment that is just under a 1/2 mile from the hospital. It also happens to be about 2-3 block from Fenway park, so there is plenty of life around here.

We moved in Wed, Oct 1st and shortly after we arrived, we received the great news about Cole from his doctors. After doing the happy dance and notifying many. Cole and I went out for a nice dinner!

Stay tuned as our adventure continues!

Cole after being notified that his CNS is free from Leukemic cells 

Cole with me and his cousins Nick and Jeff

Cole gets cool Johnny Damon gifts

Cole enjoying a root beer float

Cole and I celebrating the great news

Tues, Sept 16th - Thursday, Sept 18th - On Tuesday afternoon we received the results of Cole's latest test and are the results are not clear. They doctors said they saw an Atypical cell and are treating it as if the Leukemia is still there. Cole will receive another dose of Depocyt and test again in 2 weeks with the hopes that he is clear. If he is indeed clear and in remission, then we will proceed towards the path of a bone marrow transplant. We met with the transplant doctor in the hopes that he will be clear in the near future.

Clinically Cole is doing very well and he was discharged from the hospital Tuesday night. He has lost a lot of strength through this process and has been doing physical therapy to regain his strength. We also began hospital home bound schooling for him.

We are still looking for temporary housing of our own, so in the short term we are staying in Brookline in the home of very generous cousins of our friends. It has been great to be free from the constant interruptions of the hospital, especially during the evening.

So our journey continues.

Denise, Cole and Chris enjoying a nice dinner out

Thurs, Aug 28th - Thurs, Sept 4th - It has been an up and down week. Cole has been generally feeling ok and has begun to take some short walks a couple of times a day. However, he still becomes nauseous at times from his new chemo and this has affected his appetite. His fever has finally broken, however now we are dealing with some high blood pressure issues.

Friday was a big day. Cole had his port removed, had a BAL (Bronchoalveolar lavage), had a feeding tube installed and received his first treatment of his new chemo plan. Cole's new chemo plan is actually really like 2 plans; one which consists of some standard chemo drugs that are meant to keep the Leukemia at bay in the bone marrow and the other (Depocyt) which is targeting the stubborn cells remaining in his CNS. The Depocyt is delivered directly into his spinal fluids and will be given every 2 weeks for up to 3 - 4 total doses. Each time they give the Depocyt, they will also test the spinal fluids to see if it is working. Our first test should be Friday the 12th and we will probably have results on the following week. This simply needs to work!

Many of the drugs are given with Adavan and/or Benadryl and this has made his sleepy most of the time. So getting him up and about has been a daily struggle. This has began to change, as the antibiotics and other meds he had been receiving have been reduced.

Cole has been weakened by all of the meds and by laying down and sleeping so much. We have been doing some small amounts of physical therapy as allowed. Thursday the 4th was his best day in a while.

Our stay at the Ronald McDonald house has come to an end and now we are staying with our friends cousin who lives only a few miles from the hospital. I am not sure how long we will be there, however we at least do not have to worry about housing for a bit.

They are considering letting Cole leave the hospital next Monday. This would be great as it is his birthday on Wednesday the 10th. This will be the first birthday that Cole and his twin brother Michael have not celebrated their birthday together.

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Fri, Sept 5th - Mon, Sept 15th - On Friday I (Chris) flew back home to be with Madisen & Michael. Michael knew I was coming, however we surprised Madi. She was staying at a friends Friday night and I surprised her the next morning. It was a very special moment!

It had been a week or so since the kids were at their own home and you could tell they both needed me and a return to their normal routines. I needed it as well! I was able to attend the weekend sporting events and also was able to return to work for the week. It was great to see all the friendly faces and was also good for me to catch on a several key items. Thankfully my work (and Denise's too) has been very supportive through all of this process.

Wednesday was an emotional day for me, as it was the boys birthday and this would be the first time that they would not celebrate together. Typically we would do one large party with about 25 of their good friends. This year Michael's birthday was a last minute cake with some neighborhood friends and a trip to planet air (indoor trampoline and ropes course). Cole had a number of clinical issues that did not allow him to be discharged from the hospital, however he was able to get out for a while on his birthday. My brother Pat and wife Linda, along with Denise's friend Renee came to the hospital for the day to help celebrate. The hospital setup a nice lunch time birthday celebration for him.  After that they were able to take Cole out on the Boston Duck Tour (amphibious vehicle tour of the city) and then later a brief visit to the New England Aquarium.

On Thursday Cole developed a fever again and because of this they elected to delay his procedure that was scheduled for Friday until Monday. On Monday they gave the 2nd dose of Depocyt and took fluids for testing. We should have results in a day or two.

The week flew by and before I knew it, I was heading back to Boston. Again it was very difficult to say goodbye to Michael and Madisen and off they went back to our friends houses.

Again thanks to all for all of the support and well wishes. We both work with some amazing people, have incredible friends and an unbelievable community! We had a wonderful fundraiser at PDQ Wellington and even a few very caring neighborhood kids had lemonade stands to raise money for Cole. The stories from these events are precious.

This week is a very big week and we are hopeful that this newest drug will rid Cole of these stubborn cells and clear the path for a bone marrow transplant! I will post these results as soon as we get them.

So many people in so many ways have reached out with support that it is impossible to properly thank all. So for now we will simply say Thank You So Very Much!

Cole and Denise in the city

Cole at the New England Aquarium

Cole's cake

Cole the firefigther

Fundraiser at PDQ

Cole doing some physical therapy

Cole at the harbor with Renee

Cole with the Child Life hospital staff

Denise and Cole

Madisen, Chris and Michael group selfie

Madisen and Michael

Mike and his cake

Pat, Renee, Denise, Linda and Cole

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