Hello Everyone,
Yesterday, Alex had a Clinic appointment to see if his counts have come up yet. For the 4th week, with no Chemo - they have still not recovered. The doctors are giving it another week, and if his blood counts don't come up, they will be doing a bone marrow aspiration to see if the cancer has spread to his bone marrow, which would in a sense, be a whole new cancer - Leukemia.
I keep holding onto the hope that since they didn't order the test immediately, that it is just a precaution, and that Alex's body is just taking it's own sweet time to regenerate the blood cells. He has had great energy, despite his low counts, and we are hoping that points away from Leukemia.
So, I'm really not up to talking about it much, since we don't really know anything - we are just in limbo this week...We haven't talked to Alex about it, since we don't have any concrete information.
Thanks for all your support of my amazing boy this year. I hope to have good news to share next week...
Tuesday, April 27, 2010
Thursday, April 8, 2010
A Strong Boy
When we started this process...this journey through cancer hell, I told myself, and heard people tell me "Alex is such a strong boy, he'll make it through this!".
This cancer path we have traveled has been filled with children. Boys and girls, all fighting for their very lives. At times, the path is congested with those all racing towards their cure. Other times, the path is drenched with the tears of those whose children have lost their way, and will never return. And sometimes the road is silent. The shock of a new diagnosis or relapse is just too much to even utter a moan of sorrow.
I have learned that *all* of these children are strong. Strength is something every single child stricken with this vile disease has ten-fold. A strong child does not automatically mean they will beat this disease. A strong child does not automatically mean that they will not relapse. A strong child does not automatically mean that you won't have to say good-bye too soon.
My heart is aching for the parents who hear "Oh, your child is so strong, he will beat this!" echoing in the back of their minds, as they hold their son's hand in hospice, whispering to their boy's cancer-riddled body, that he is loved, and "good-bye". I follow the stories of many of the families that we have met through our battle with cancer. Many of these stories will not have happy endings.
Alex is just as strong as those children, and yet, they are dying. They won't get to see their next birthday, while Alex is celebrating his next week.
I don't take his birthday lightly. I am so grateful to the doctors who are helping my son be part of the survival statistics.
I know we are all looking to find hope, and words of encouragement to give each other in these times. Just remember the power of those words, and how they can turn to such great sorrow in a heartbeat.
This cancer path we have traveled has been filled with children. Boys and girls, all fighting for their very lives. At times, the path is congested with those all racing towards their cure. Other times, the path is drenched with the tears of those whose children have lost their way, and will never return. And sometimes the road is silent. The shock of a new diagnosis or relapse is just too much to even utter a moan of sorrow.
I have learned that *all* of these children are strong. Strength is something every single child stricken with this vile disease has ten-fold. A strong child does not automatically mean they will beat this disease. A strong child does not automatically mean that they will not relapse. A strong child does not automatically mean that you won't have to say good-bye too soon.
My heart is aching for the parents who hear "Oh, your child is so strong, he will beat this!" echoing in the back of their minds, as they hold their son's hand in hospice, whispering to their boy's cancer-riddled body, that he is loved, and "good-bye". I follow the stories of many of the families that we have met through our battle with cancer. Many of these stories will not have happy endings.
Alex is just as strong as those children, and yet, they are dying. They won't get to see their next birthday, while Alex is celebrating his next week.
I don't take his birthday lightly. I am so grateful to the doctors who are helping my son be part of the survival statistics.
I know we are all looking to find hope, and words of encouragement to give each other in these times. Just remember the power of those words, and how they can turn to such great sorrow in a heartbeat.
Monday, April 5, 2010
Sleepy Alex
I'm sitting next to Alex who is asleep (well, unconscious) next to me. We had a clinic appointment today, and he had a Lumbar Puncture (LP) to inject more Methotrexate into his spinal fluid, and ultimately, his brain.
He *loves* the "sleepy-milk", which is what he calls the anesthesia medicine that the doctors inject into his Port. It puts him under quickly, leaving him limp in my arms within seconds of receiving the concoction.
His counts were down again today. His ANC was only 400. Low enough to stop his Mercaptapurine for the week. He *did* receive his Vincristine in his Port, and will start the Prednisone (steroid) this evening.
The doctors aren't sure why Alex's counts continue to drop at the 100% protocol, so next week, after checking counts again, they will put him on lower amounts, and *ever* so slowly increase the dose over 3 months. They aren't sure if he will be able to get to 100%. That really scares me, since the highest success rates for this protocol are at the 100% dosage levels. It is a true balancing act, and the doctors are doing everything they can to get him the most Chemo without reducing his counts to levels that risk his life.
My heart is aching for him. His little body has endured so much! I worry that with his counts so low, that he will get sick before his birthday party. Since his diagnosis, his birthdays have taken on even more meaning to me. "Take THAT cancer - we made it another year!"
He is sill out cold - it always takes him so long to "come out" of the sedation. I better go now, and see if I can wake my brave boy.
He *loves* the "sleepy-milk", which is what he calls the anesthesia medicine that the doctors inject into his Port. It puts him under quickly, leaving him limp in my arms within seconds of receiving the concoction.
His counts were down again today. His ANC was only 400. Low enough to stop his Mercaptapurine for the week. He *did* receive his Vincristine in his Port, and will start the Prednisone (steroid) this evening.
The doctors aren't sure why Alex's counts continue to drop at the 100% protocol, so next week, after checking counts again, they will put him on lower amounts, and *ever* so slowly increase the dose over 3 months. They aren't sure if he will be able to get to 100%. That really scares me, since the highest success rates for this protocol are at the 100% dosage levels. It is a true balancing act, and the doctors are doing everything they can to get him the most Chemo without reducing his counts to levels that risk his life.
My heart is aching for him. His little body has endured so much! I worry that with his counts so low, that he will get sick before his birthday party. Since his diagnosis, his birthdays have taken on even more meaning to me. "Take THAT cancer - we made it another year!"
He is sill out cold - it always takes him so long to "come out" of the sedation. I better go now, and see if I can wake my brave boy.
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