Cole's Journey

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!!!