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.
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