First, I want to tell everyone that has called, sent texts, emailed, written in the guestbook, watched our dog, offered to help, donated blood, made us dinner, visited us, sent gifts and cards to Nico, read these posts, kept us in your thoughts and prayers, or even just thought kindly towards our sweet little boy, THANK YOU. Please forgive us for not responding directly. I cannot contain my sadness when I speak about it, so I just do not speak unless I am forced to do so. Your gestures mean the world to us. They honestly keep us going. We read every word to each other (over and over sometimes). Thank you from the bottom of our hearts.
Second, as I stated before we are awaiting the results of the cytogenetic testing of Nico’s leukemia. I am not a scientist, but from what I have gathered, leukemia occurs when the progenitor cells responsible for pumping out white blood cells screw up the white blood cells’ chromosomes. This can occur in various ways. Some of these chromosomal changes have much better outcomes than others. It makes a huge difference actually. So if all of you good people out their pulling for Nico could just concentrate on trisomy 4 or 10 while you are thinking or praying about him. These three chromosomal aberrations have the best (by far) prognosis. We are not trying to get all new-agey, but this is all we can do for our little boy – send him as much positive energy as we can, pray for him, meditate on him, and think as many positive thoughts as we can while crying five times a day. So in an effort to concentrate on what we want, instead of what we do not want, we are pulling for 4 or 10.
Now, on to the complaint portion of my entry ---
Nico stopped walking. He kept asking to be held and carried and at first we thought the he was just feeling insecure. Then last night, I set him in front of his bookshelf and asked him to pick a bedtime story. That was when I saw him struggling to walk. He sort of limped and then toppled over. I called the clinic and they told me just to “watch him” that he is still recovering from the hospitalization. This morning was worse. He would not even attempt to take a step and if he is even asked to stand on his own, he cries. We called the clinic again. I considered just taking him to the hospital, but his white blood cell count is so low now from the chemotherapy that any exposure at all to any illness could be deadly to him. We waited hours and never heard back from the clinic. I ended up signing up on a list serv of mothers with children that have ALL (the type of leukemia that Nico has). I posted my concern and immediately had sixteen responses that this is totally normal. All of the mothers that replied stated that their young children stopped walked during the induction phase of chemotherapy. Some of the children did not start walking again for months. The explanation was that the leukemia cells themselves and/or the Vincristine (one of the chemotherapeutic agents) causes bone pain and walking is so painful that coordination is lost. On the one hand, I was relieved that it was not permanent. I had imagined that he had internal bleeding that was compressing his spinal cord. I was really terrified. So finding out that is a temporary and “normal” side effect of the disease is a relief. On the other hand, discovering that your 2-year old baby is in so much pain that he cannot walk is deeply upsetting.
We called the Clinic again, just to double check what the Momcologists on the Internet reported, and again we have not received a callback. I am really angry about the care we have received from this hospital. This entry would be too long if I listed how many times the ball has been dropped, but this is totally unacceptable. We have played nice, been understanding, and luckily no serious injury has occurred, but both Jeff and I are now mad. None of our issues are with our doctors. But the medical center as a whole has not functioned as it should. Tomorrow will be interesting since we are due back in clinic for another lumbar puncture (spinal tap) and chemo session. Things will have to shape up, or we will take Nico to another hospital even if that means going out of state.
Second, as I stated before we are awaiting the results of the cytogenetic testing of Nico’s leukemia. I am not a scientist, but from what I have gathered, leukemia occurs when the progenitor cells responsible for pumping out white blood cells screw up the white blood cells’ chromosomes. This can occur in various ways. Some of these chromosomal changes have much better outcomes than others. It makes a huge difference actually. So if all of you good people out their pulling for Nico could just concentrate on trisomy 4 or 10 while you are thinking or praying about him. These three chromosomal aberrations have the best (by far) prognosis. We are not trying to get all new-agey, but this is all we can do for our little boy – send him as much positive energy as we can, pray for him, meditate on him, and think as many positive thoughts as we can while crying five times a day. So in an effort to concentrate on what we want, instead of what we do not want, we are pulling for 4 or 10.
Now, on to the complaint portion of my entry ---
Nico stopped walking. He kept asking to be held and carried and at first we thought the he was just feeling insecure. Then last night, I set him in front of his bookshelf and asked him to pick a bedtime story. That was when I saw him struggling to walk. He sort of limped and then toppled over. I called the clinic and they told me just to “watch him” that he is still recovering from the hospitalization. This morning was worse. He would not even attempt to take a step and if he is even asked to stand on his own, he cries. We called the clinic again. I considered just taking him to the hospital, but his white blood cell count is so low now from the chemotherapy that any exposure at all to any illness could be deadly to him. We waited hours and never heard back from the clinic. I ended up signing up on a list serv of mothers with children that have ALL (the type of leukemia that Nico has). I posted my concern and immediately had sixteen responses that this is totally normal. All of the mothers that replied stated that their young children stopped walked during the induction phase of chemotherapy. Some of the children did not start walking again for months. The explanation was that the leukemia cells themselves and/or the Vincristine (one of the chemotherapeutic agents) causes bone pain and walking is so painful that coordination is lost. On the one hand, I was relieved that it was not permanent. I had imagined that he had internal bleeding that was compressing his spinal cord. I was really terrified. So finding out that is a temporary and “normal” side effect of the disease is a relief. On the other hand, discovering that your 2-year old baby is in so much pain that he cannot walk is deeply upsetting.
We called the Clinic again, just to double check what the Momcologists on the Internet reported, and again we have not received a callback. I am really angry about the care we have received from this hospital. This entry would be too long if I listed how many times the ball has been dropped, but this is totally unacceptable. We have played nice, been understanding, and luckily no serious injury has occurred, but both Jeff and I are now mad. None of our issues are with our doctors. But the medical center as a whole has not functioned as it should. Tomorrow will be interesting since we are due back in clinic for another lumbar puncture (spinal tap) and chemo session. Things will have to shape up, or we will take Nico to another hospital even if that means going out of state.
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