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Carter Update wrote: Carter Update - 2/25/2014

13 hours ago
After missing counts for two weeks, Carter began the dreaded “Delayed Intensification” phase of his roadmap on February 4th. While there is a light (the long term maintenance phase) at the end of the tunnel, this is awful. “Day 1” alone consisted of intrathecal methotrexate (required being put under), vincristine, doxorubicin and dexamethasone – a particularly strong steroid given in 7-day doses. Throughout this phase, he will also have pegaspargase, cyclophosphamide and cytarabine. While we knew this would be a tough and intense phase of treatment, we were not expecting the toll it has taken on Carter – and all of us.

Honestly, he has looked and felt the worst since his diagnosis 7 months ago. He has felt lousy, battled a cold, a stomach bug that he shared with his sister, seen his limited ability to participate in activities further limited by bad weather and had a planned family road trip / weekend to the Chesapeake Bay cancelled per doctor’s orders due to low counts. His scheduled trip to the clinic last Tuesday showed that his ANC had plummeted – which was not unexpected. However, his mother’s intuition was correct when she took him back to the clinic on Friday given how awful he felt. It turns out that Carter was dehydrated and his sodium levels were low – which can cause seizures. We were admitted into the hospital Friday afternoon for fluids and further monitoring. He had a restful night next to Daddy in the hospital bed and, thankfully, his sodium levels returned to normal and we were sent home Saturday afternoon.

He was back at the clinic today and – while his counts were ok – his sodium count had dropped again. We are to replace water with Gatorade in hopes of stabilizing the sodium levels. Once again, a rollercoaster ride/nightmare.

So much of this has been heart-breaking to witness. The first thing he often asks in the morning is “Am I going to the hospital today?” One day when Courtney was going to pick up dinner, he asked “May I please go with you? I’ll wear a mask.” No child should ever have to ask those sorts of questions. I thank the Lord for Carter’s strength, grace and love through this awful ordeal. Despite his spirits and energy taking a big hit, he continues to inspire me each and every day.

The need for comic relief has fallen upon Virginia – and she has filled that role brilliantly. She will perform her version “ballet” on command, does age-inappropriate booty-shaking dances and regularly tells her daddy that he has to either go outside or to the naughty corner (even when I don’t deserve it). She adores her big brother and is a blessing from the Lord, no question about it. We are thankful that she will not remember most of what Carter calls his “sad days.”

We continue to pray – and pray hard – for Carter. A friend told me that he prayed for Carter’s strength to handle these treatments, for the doctors’ wisdom in treating him, and for our stamina through this journey. The outpouring of love and prayers for our family is humbling and means more than you know. We ask that you continue the prayers as we believe in the power they provide not only to Carter but to us.

Love,
Chris