Cole's Journey: September 2014

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!