Thurs, July 24 - Sat, July 26 - The whirlwind continues in Boston. Each day since we've been in Boston we have gone for tests. All of this for the doctors here to make their own assessment of Cole.  We also had one more Spinal Chemo treatment. This has taken a toll on Cole and us as well. Cole has been very tired and lethargic most of the time and the doctors have not yet had a chance to meet the Cole that we all know and love. All they have seen is this very tired and worn out boy. At the same time, Denise and I are staying in contact with our other two kids who are back in Florida with our friends. 

Madisen's play "Hairspray" opened Thursday night and we were unable to be there for her. She has worked hard at this craft and has been very fortunate to have had some great roles in her plays at Standing Ovation Performing Arts, however she was particularly excited for this role as the mean girl "Amber". One of our friends was able to Skype us in, however it was not nearly the same. It was the first time we have missed one of her plays and it was heartbreaking. I heard from all that the play was terrific. Great job everyone! In our absence, our friends made it as comfortable for Madisen as possible. Thank you.

Denise's best friend and her husband Art and son Drea came back to visit us for the day on Thursday and it was comforting to have them here with us again.

Friday is here and we are anxiously awaiting our consult with our Doctors at 1pm to find out the current status of Cole's Leukemia and to receive his action plan. They asked us to come a little early this day to do another blood test with him, as his Sodium levels have been low. So we arrived at 12 noon and they drew blood for his test. The doctors are now ready for us and we meet in a private room with them. We bring Cole out into the waiting room, where he lays down and one of the volunteers watched him. Finally the time is here and the doctors present to us. They let us know that the Leukemia is still present in his CNS (Central Nervous System). They did not say how much, because they said that it doesn't matter. What matters is that it still exists and what the plan was to get rid of it. This is clearly not the news we were looking for. They still told us that they had seen this before and have had success in treating it. What they would not say is any percentages of success or any inclination of prognosis. This was not comforting to us. Nonetheless they let us know that the next step is a 4 week treatment that includes a couple of different chemo drugs (Asparaginase and Cytarabine). These drugs are not directly delivered to the CNS, however they are known to penetrate into the CNS.  The hope is that they will clear these remaining stubborn cells in the CNS.

We go right from Dana Farber to the Boston Children's Hospital where we are admitted and Cole begins his new treatment plan. Denise decides that she wants to stay at the hospital this first evening and I head back to the Ronald McDonald house. It was a bumpy first night and neither Denise or Cole got much sleep. My night at the RM house was interesting as well, as it was the first night alone in our room.

Saturday is a little better as we had a consult with another of the doctors and she made us feel a little more comfortable. She was able to answer additional questions that we hadn't thought of the day before. She had also let us know that their were more weapons in their arsenal to combat this should this chemo round not clear the remaining CNS cells. She also reaffirmed that they have had success with similar cases, again without any percentages or the like.

Cole's next testing will be at a date in the future depending on his doctors, but it will be at last 3 weeks away.

The Cole Strong 28 tournament is all set for next weekend, Aug 2nd and 3rd. We have plenty of amazing auction items, however we are still looking for a few more volunteers. If you want to volunteer, go to the tournament website and follow the instructions on the volunteer page. This tournament will be a nice time for all and we are looking forward to great turn out. Thank you to all of my close friends who are working so hard to make this a success!

Tournament website: eteamz.com/colestrong.

Chris, Cole and Denise selfie

Cole paints an elephant, green of course!

Cole and Denise

Matt and Jay Lashley are in Boston for a wedding and visit Cole

Cole getting a little shut eye

Sat, July 19 - Wed, July 23rd - The last several days have been a whirlwind. We only had a couple of days to get our home affairs in order, assemble our friends that will be taking care of our kids while we are away and get ourselves ready for an indefinite stay at an unknown location in the Boston area. Somehow we got this done over the weekend. This was also a very emotional weekend. It was very difficult to say goodbye to your children and not have a definite date of return to give them. We tried our best to explain this to them and to spend as much quality time with them before we left. All this on top of the scary nature of not knowing what we are up against with Cole. Nonetheless we know we just need to do this. On Sunday we received a call from the Ronald McDonald house of Boston that they have a room for us. This will be very helpful and is one less thing to have to worry about.

So our flight is scheduled for 2:40 on Monday. Cole was actually feeling pretty good this day for the first time in weeks. We arrived at the airport to find that our flight was delayed until 4:35. Then a short while later we found out that the flight was delayed again until 7:15. So we went back home to let Cole rest. We headed back and finally boarded around 7:30 and took off around 8:00. Our good friend Jane who lives north of Boston picked us up at Logan airport and we finally arrived at the Ronald McDonald house (http://www.rmhboston.org) around midnight. It is a very nice Victorian style home built in the 1860's. Jane was also very thoughtful and packed some essential groceries for us. Thank you! We were very tired to say the least and were off to bed shortly after our arrival.

On Tuesday we had a 1pm appointment at the Dana Farber Institute which is only a few minutes away from where we are staying. We get there and can immediately tell that this is a well oiled machine. Very professional, courteous and thoughtful. We meet a number of new people there and begin a series of papers for check-in and for transfer of care. A short while later we have a consult with a senior Oncologist (Dr Billett), a new Oncologist and the head nurse. They had already read all the reports, test results, etc... that we had previously sent, however we still spent about 1 1/2 hours talking about every detail of Cole from birth until today. This day was not about a plan for Cole yet, however they did say that they had dealt with Cole's condition before successfully, but they want to run their own series of tests first and then we would confer again to discuss their plan for him.  We then returned to the RM house and began to acclimate ourselves. We ordered in a little dinner and made it an early night.

On Wed at 11 we had to be at the Boston Children's Hospital for an echo-cardiogram and then we are sent over to the Jimmy Fund clinic for a 2pm spinal treatment. All of the buildings (Dana Farber, Boston Children's Hosp and the Jimmy Fund outpatient clinic) are connected by indoor hallways/walkways which makes it pretty easy to go back and forth. Cole is brought in and readied for his treatment. Around this time, our good friends Art & Renee had come to visit and spend the remainder of the day with us. They brought Cole a wood baseball bat signed by a number of kids from their hometown in New Hampshire. Having Renee here was was especially comforting to Denise as she and Renee have been best friends since high school. Cole's treatment went well and we returned back to the RM house. Dinner was delivered courtesy of our friend Jeff Trynz. Thank you Jeff! After dinner, I took advantage of Art having a car (actually a Jeep) and took a trip to the grocery store to pick up a few things. Art and Renee stayed a bit into the evening and then left for home, however they are returning tomorrow.

We are scheduled for another test tomorrow (Thursday).  By late Thursday or early Friday, tests results will be back and they will be ready to discuss an action plan for Cole by Friday afternoon. We are nervous, but hopeful.

We feel encouraged by our discussions and they have reaffirmed our decision to come here. In the words of our cab driver, "the people here are very smaaht". I believe that was "very smart" :)

Getting a few hugs before we leave

On our way to Boston

Cole got us to Boston safely!

1st day at Dana Farber

Ronald McDonald house of Boston

Mon, July 14 - Fri, July 18 - This week has been full of some highs and some real lows. It started off similarly to last week; Cole was tired but generally feeling OK. Our friends watched him on Monday and Tuesday while Denise and I went to work. Both of us are finding it harder and harder to leave him to go to work, however we do not know how long we will be away once we have to go to Boston/Dana Farber for further treatment and want to get done as much as we can at work and make sure our co-workers are prepared to handle things while we are away.

Wednesday is a big day. Cole has his intrathecal (spinal) chemo in an attempt to rid his CSF (Cerebrospinal fluid) of Leukemic cells. We need his Leukemia count to be zero in the CSF to continue on his current treatment plan. They will also test his spinal fluid pressure, as this was the cause of the swollen optic nerve that originally led us to finding that his Leukemia had returned. In addition they will test his bone marrow for any evidence of Leukemia.

The pressure test came back and that is continuing to fall into the range it should be. The pressure was originally at 23 and normal range is 12-18. It is now 16. We are scheduled to see his ophthalmologist on Friday to see if the optic nerve is still swollen. A little later in the afternoon Cole's doctor called and said the local tests on his CSF looks clear, but we still need to wait on the detailed test. These are expected late Thursday or Friday. We are cautiously optimistic, but will be on pins and needles until the detailed results come in.

On Thursday we are notified that Cole's fraternal twin brother Michael is an exact marrow match. This is great news for if and when we get to the point of Cole needing a bone marrow transplant. A little later we get a call that Cole's bone marrow shows no further sign of Leukemia. All very good news. Then we get the bombshell call. Cole's doctor calls and says the detailed CSF report is in and there is still Leukemia in Cole's central nervous system (CSF fluids)and it appears to have increased from 3% to 8%. This is horrible news as it means that he is now off his treatment plan and a bone marrow transplant is not even an option until the CSF is clear.

So where do we go from here? This is the question. Cole's local oncologists now need to confer with the doctors at the Dana Farber Institute in Boston, as his current treatment plan does not have a path for his results. On Friday, our local doctor, Dr Saxena, talks with Dr Silverman of the Dana Farber and advises him of Cole's situation and they decide that we need to go there and admit Cole. We start making calls and begin to make arrangements. Cole is scheduled to be admitted Tuesday. Denise and I have booked a flight on Monday for the 3 of us. In addition, all of Cole's test results, some slides and fluid samples have been sent to Dana Farber and now we need the doctors there to thoroughly review all. We do not have any other information on prognosis or treatment plan, as I would assume that the Dana Farber doctors will need to go through his results, test his fluids on there own machinery and then formulate a plan to discuss with us upon our arrival. This is very scary, to say the least.

This week has been an emotional roller coaster. Our only comfort level with any of this is that we are going to a world class institution that is one of the best in the world at treating childhood Leukemia. There are still many plans and arrangements to be made, as our other 2 children will not be going with us and we do not even know how long we will be gone. This is very challenging to accomplish in this emotional state.  We are trying our best to be strong and not show our emotions too much in front our kids and especially not in front of Cole. He is a very selfless kid and he would not want us feeling this way.

We are so very thankful for the amazing people in our lives who are taking so much time away from their own busy lives to help us. We could not do it without you all! Words cannot express how grateful we are to all of you! Thank you!

So another chapter in our life will begin next week. We are hopeful that the doctors at Dana Farber will have a plan to get us back on track. Please continue to keep us in your thoughts and prayers.

Cole Strong!!!





#ColeStrong28

ColeMalone.org

GoFundMe.com/ColeMalone

Fri, July 11 - Sun, July 13th - Friday had the family going up to Cole's Oncologists office to have the kids mouths swabbed to test for a bone marrow match. The swab samples will be sent overnight to the Dana Farber Institute in Boston. We are told that it will take 7 - 10 days to get the results. This goes without saying how important this is. We returned home and a little later his 3rd grade teacher Ms. Gadberry came to visit. She brought him one of his current favorite lunch's, popcorn shrimp. She stayed for a little while and hung out with Cole. He was pretty tired, but he really enjoys her company.

The evening brought us a delicious dinner from Espisitos Coal Fire Pizza and Pasta. Thank you from our JCC friends Lisa, Yvette and Tema! After dinner we watched a movie and then an early night to bed.

On Saturday Cole began to feel a little better and we were able to get him up and about a bit. He felt good enough to go to Target and purchase a new wrestler toy. A little later in the afternoon one of his baseball buddies Max and his mom Jennifer came over to visit.

On Sunday morning I had my Vipers baseball team practice and we wound up scrimmaging the Cobras. Cole felt good enough to come over to the fields and say hello to the boys. The boys all came over to say hello to him and we took a nice picture of them all together. What a great moment! He stayed and watched for a little while and then Denise took him home.

Cole is still pretty tired most of the time and when he is not sleeping, he is generally wanting to eat. Thank you steroids. Can't wait until these are no longer part of the treatment. A little later in the early evening, Cole was feeling better and I got him in the pool for a little while. It's good for us to get him up and about as much as we can.

The Cole Strong 28 Baseball Tournament is going strong. All age divisions are filled!!!! Need any additional sponsors by today. We can accept silent auction items up until the week of the tournament. Thank you to the sponsors who have already come forward and signed up! Please see the tournament website for more info:www.eteamz.com/colestrong.

Denise and Cole

Cole, Michael and Madisen waiting to be swabbed for a marrow match

Ms Gadberry and Cole

Cole hanging with his baseball buddies

Cole and Dad going for a swim

Wed, July 9th and Thurs, July 10th - Wednesday was a tough day. He was not able to eat or drink anything, not even his pain pill because he was having his spinal procedure. His body was really aching this morning and we had to help him into the car for our drive to the doctors/hospital. When we arrived, he could not walk and I had to get a wheelchair to bring him in. When I finally saw his doctor, he told me that I could give him his pain pill and that helped a bit. He still was very tired and uncomfortable. The doctors did his CBC blood test and his counts were back up again. His counts are now 4747, so that means his immune system is rebounding well.

Off we went to the Kimmel outpatient for his weekly Wednesday procedure and chemo. One of his favorite nurses Judy, brought him in a present. It was a fishing pole that was her brothers and she wanted Cole to have it. This was so very sweet of her. Cole received his chemo and all went well. Now it was just a waiting game for the results. We really want and need his Leukemia cells to be at 0% to be able to have the current protocol timeline to be the same. A couple of hours go by and the doctors call and let us know that some Leukemia still exists. It is down from its original of 70% to 3%, but nonetheless it still exists. This means that they will extend the current protocol cycle by one week in an effort to get to 0%. This was clearly not the results we were looking for! Now we have to hope and pray that next weeks test is 0%.

Cole came home and we had a nice evening. Dinner was supplied by our good friends Ilan and Robin Hurvitz, thank you! Cole was pretty tired and the rest of the evening was uneventful.

Thursday returned Denise and I to work, thanks to our good friends who are watching Cole at our house. I shouldn't even call them friends, they are really like family and we do not know what we would do without them. Cole was still pretty tired, but was in good spirits.The pain had largely subsided for Cole and he no longer needed his pain meds in the evening.

We were notified that our bone marrow match swab kits had arrived from the Dana Farber Institute at our doctors and we scheduled to bring the kids in Friday morning to swab them. The swabs are then returned to Dana Farber and we should have match results in a week or two.

This evening I started a GoFundMe fundraising page, as I have no idea where this adventure is going to take us. As a starter, Denise will be reducing her hours at work and new insurance rates have co-pays at a much higher rate than before. The results on this page so far have been incredible.

The Cole Strong 28 Baseball Tournament is going strong. All age divisions are filled!!!! However we will need sponsors, silent auction items and volunteers. Thank you to the sponsors who have already come forward and signed up! Please see the tournament website for more info:www.eteamz.com/colestrong.

Michelle and Cole goofing around

Cole in his hospital room awaiting his procedure

Cole with nurse Judy giving him a fishing pole

Mon, July 7th and Tues, July 8th - Monday was full of ups and downs. The day started by heading to Dr. Gowda's to have a CBC blood test. The results were good, his counts had rebounded to 1,350. This was also the first day in a few that he had started to feel a little better and not so tired. We went back home and he relaxed for a while. A short time later he said that he wanted to go see a movie. This was the first time in a week or so that he actually wanted to go somewhere. So we went to go see Train you dragon 2. All was good until about 30 minutes to go in the movie when he started to complain that his back was sore. I re-positioned him several times, but he never could get quite comfortable. However, he did stay until the end.

When we got home the pain started to move to his legs and joints. This is the first time since we started this treatment plan that this pain existed. I gave him Tylenol to ease the pain and that seemed to work a bit. Dinner was delivered this evening courtesy of my coworkers in our HR department. Thank you Beth, Helene and Ronit for the delicious meal!

The next day (Tues) the pain was worse. So we called his doctors and they prescribed a pain killer for him. This pain killer did the trick for him, however you could tell he was not feeling well again and he mostly stayed laying down on the couch. He is really starting to lose his hair now. So I got our the hair trimmer and trimmed it pretty short. You can also start to see the weight gain in his face. It's hard to watch this transformation. I have to just keep reminding myself that these are relatively short term affects and also insignificant to his overall treatment.

Tomorrow is a big day for Cole. Another full day for his chemo treatments and testing at the Kimmel Outpatient Center at St. Mary's Hospital.

Our Cole Strong 28 Baseball Tournament is on and all age divisions are filled!!!! However we will need sponsors, silent auction items and volunteers. Thank you to the sponsors who have already come forward and signed up! Please see the tournament website for more info:www.eteamz.com/colestrong.

Fri - Sun, July 4th - 6th - Sufficient to say, this 4th of July was pretty uneventful for the Malone clan. However it was a day that we could be reflective and appreciative for all that we have. These days in general have been pretty uneventful, as Cole's ANC counts are low and we've needed to keep him pretty isolated. He has also been very tired and lethargic. We are told that this is to be expected because of the steroids. He has been napping throughout the day and going to bed pretty early, however this means he has been getting up pretty early as well. We occasionally have been getting him to play a board game or a card game. We play a game called Pitch that is pretty popular in our original home town of Syracuse. Typically this is an adult game, however he and my other kids have actually gotten quite good at it. However most of the time he wants to talk about food and what his next meal will be. His appetite has been pretty solid. I think he is dreaming about food these days :)

The evening of the 4th was just our immediate family. A little earlier in the day I purchased some fireworks that go pretty high in the sky and some sparklers for the kids so we could have a show of our own. Cole lit a couple of sparklers and watch a few of the big fireworks, but he tired quickly. He went to bed and watched more fireworks from his bedroom window. It is tough to see him like this, however we have been through this before and we know there is a light at the end of the tunnel.

Saturday brought much more of the same, however we did get some good news. His doctor called with his bone marrow test results and the Leukemia percentages were down from 35% to 2%. Under 5% is considered to be in remission and this is what we were looking for. It is still obviously a very long road for him, however this further confirms that the chemo is doing its job and if all continues to go this route then it also means that we can continue on this treatment protocol.

Saturday and Sunday also meant baseball and soccer practice. I cannot find words that describe how I feel about only bringing one boy to practices that I have been bringing 2 boys to for the past 5 years. I guess I just have to understand that life cannot stop for my other children. Focusing on the other children is difficult at times, especially after long and challenging days. However it is something that we have to focus on more, as so much attention has been focused on Cole.

Our Cole Strong 28 Baseball Tournament is on and all age divisions are filled!!!! However we will need sponsors, silent auction items and volunteers. Thank you to the sponsors who have already come forward and signed up! Please see the tournament website for more info:www.eteamz.com/colestrong.

I have to send a special shout out to our good friend Elissa Levine. She has so many good ideas and has been working hard on sponsorship, promotion for the event and silent auction items. Many of which are already bearing fruit. She is amazing, thank you!!!

Cole with his sparkler

 Michael with his sparkler

Madisen  with her sparkler

Cole and Dad napping

Wed, July 2nd and Thurs, July 3rd - Wednesday was a full day at the hospital for testing. We start off in the oncologists office around 9am at St Mary's for a CBC blood test. This test tells us where his blood counts are. Today it shows that his white counts are down and his ANC is only 66 (under 1,000 we need to limit interactions with others). These are expect results as the chemo beats on the immune system. His ANC being so low mean that his immune system is compromised and his ability to fight off infections and the like are greatly reduced. This means that we need to keep him pretty isolated until this goes back up.

Next we went to the Kimmel outpatient center at St Mary's to prepare for his spinal infusion, other chemo and testing. As usual, he is greeted by a host of nurses with big smiles that really love him. Several of these nurses are the same nurses that treated him when he first had Leukemia years ago. They are really special people! I won't name names Judy, Pam and Michelle :)

Now its basically a hour or 2 wait before he is put under anesthesia for the spinal procedure. This is always the hardest time, as he is unable to eat or drink anything since the night before and he is more hungry than usual because of the steroids that are part of his treatment.

Around noon he is put under and his procedure is soon after completed. They then start the remainder of his chemo via IV. Cole wakes up around 2pm and I have his favorite Sausage, Egg and Cheese on a Croissant sandwich waiting for him.  Sufficient to say, the sandwich didn't last long. Now we just need to wait for the the remainder of his Chemo to be given over the next 2 hours and an hour of monitoring before we can go home.

Around 4pm I get a call from his doctors with some of his results. They were testing the spinal fluids, the spinal fluid pressure and his bone marrow. The spinal fluids which had over 4,000 cells from the sample site had reduced last week to 450, were now down to 23. We were hoping for zero, but 23 is still very good and further demonstrates that the chemo is working. His spinal pressure originally was at 23 and was what we believe was the cause of the swollen optic nerve, as normal rang is 12-18. Today's test showed that the pressure is now down to 18. This is also good news. The bone marrow test has to be sent out and typically we would have it back on Friday, but because of the holiday we probably will get these results on Monday. However, our local doctors looked at the bone marrow cells under the microscope and the preliminary results looked clean.

It's now 5pm and we are finally on our way home. Cole is pretty wiped out from the days events and me too. Again our special friends have provided dinner for us. Thank you to Jennifer Kramer and family for providing a very nice homemade meal for us!

On Thursday Cole woke up and was feeling good again. I am constantly amazed how resilient and positive this boy is! Our friend Michelle Soto again watched Cole and his sister Madisen, so that Denise and I could get into work again. We are trying to stay on top of work as much as possible now, as we confident that at some point in the coming months that we will need to be out of town for at least a few months.

Cole had a good day. He was a bit tired, but this is to be expected. When we returned home from work, we were again presented with Dinner. This time it was a delivery from Thai Shokun. Thank you to the Klein's, Fecther's and Greenspan's. The evening ended with a good game of Monopoly.

The Cole Strong 28 Baseball Tournament is on!!!! We won't need many teams, as we have already filled the 8u, 9u and 10u divisions. I am sure we will have the 11u division filled very soon. However we will need sponsors, silent auction items and volunteers. Thank you to the sponsors who have already come forward and signed up! Please see the tournament website for more info: www.eteamz.com/colestrong.

Again, Denise & I cannot thank you all enough for all of your love and support that you all have shown us!!!

Mon, June 30th & Tues, July 1st - Beyond being tired at times, Cole in general has been feeling pretty well. He has spent these days at our good friends the Soto's and hanging with his buddy Javi. Thanks Michelle for watching him and allowing both Denise and I to get into work for a couple days! Hopefully he is not eating you out of house and home :)

We are beginning to see loose hairs, so it is just a matter of time before his hair is gone. This is really no big deal in the grand scheme of things, but it is an item that makes it more "real". I decided to give Cole a haircut, so that their will be less to fall out and maybe the hair loss will be a little less noticeable to him. His brother Michael went and got a full Mohawk and it suits him well.

Tomorrow (Wed) is another big day for Cole. He will spend the day at the hospital (outpatient) getting his spinal chemo and other slow drip chemo. At this time they will test the spinal fluids again to assess how well that he is responding to the chemo. We typical get results back later the same day or the next. Hopeful that we will continue to get positive news.

We had another Cole Strong 28 Baseball Tournament planning meeting Tues evening. We should know tomorrow (Wednesday) if the fields will be available for us to use. If so, the tournament will consist of 4 teams from each of 8U, 9U, 10U & 11U divisions. Looks like we will have no problem getting teams to play. The fundraiser will consist of the tournament itself, a home run derby, sponsorship, silent auction and concessions. I will get the word out on this blog and Facebook as soon as I know this event is a go. Thanks to all for their efforts to date!