It is official, we are in the last leg of this journey. Titus has less than a year left of treatment, it is a very weird feeling. May 2015 (or close to that) he will be done. This brings a sense of excitement, along with trepidation. I remember when he was diagnosed, the feeling of treatment taking an eternity, it has gone by quicker than I thought it would. He is 6, officially a first grader. He is smart, funny, brave, adorable. He doesn't let much bother him. I am so proud to call him my son, so proud to be by his side and hope he understands one day how brave he has been, and continues to be.
He had a lumbar puncture and IV chemo infusion yesterday, he has this every 12 weeks. Looks like he will have about 4 more (not 100% sure) before the end of treatment. His counts were great. His hemoglobin is above 11, his platelets 140,000 (really good for him) and his ANC (absolute neutrophils, part of white blood cell count/immune system) was 2040 (needs to stay between 700-1500). He had the IV chemo infusion given, and then he was sedated and had the LP and chemo administered into the spinal space during it.
In April his counts bottomed out and he was put on a chemo hold for three weeks. His hemoglobin hung out around 6-7, his platelets were below 50,000, and ANC eventually bottomed out just under 300. Once his counts bounced back during the chemo hold, his home chemo was restarted at a lowered dose. He has been on that lowered dose for about 5 weeks now, and just had it raised a little bit yesterday. With his ANC being above 1500, we will be monitoring his counts and trying to get the chemo to the right dosage again to get his ANC in the desired range. The goal is to keep his immune system suppressed, this is how they measure how well the chemo is working.
He is tired and grumpy today, thanks to the IV chemo and the steroid pulse he is on (that partners with the IV chemo). Thankful that the steroids are only for 5 days. We go back the beginning of July for labs - hoping we have a uneventful three weeks until then!
Thursday, June 12, 2014
Friday, April 25, 2014
Just when you think life is predictable again...
Well, this past year of Titus' treatment has gone smoothly. April of 2013 he had to have his port replaced, ever since he has been fairly healthy; no ER visits, and counts have been more or less stable.
For all of this we are extremely thankful.
At his last routine visit for treatment back in March, his counts were great. A month later, his hemoglobin and platelets and eventually his ANC dropped, the lowest we have seen his hemoglobin drop since intense treatment. His Dr. believes that Titus' marrow is more sensitive to his chemo than the "normal" (whatever that means), his platelets and hemoglobin have always run a bit lower, but never at a concerning level during maintenance. We are now beginning our second week of him being on a chemo hold and as of Wednesday, his counts were slowly beginning to rebound. We go in and have labs checked again this coming Wednesday, and will begin chemo again at a lower dose.
Dr. isn't wanting to hold his chemo any longer if we can help it. At this point, the goal of his daily and weekly home chemo doses is to not only destroy any remaining cancer cells, but to also keep his marrow suppressed enough that it won't create more. The longer he isn't receiving his meds, the higher the risk for relapse at this point - so while his body needs this break, it is slightly nerve wracking.
At last check his hemoglobin was 6.9, up from 6.7, and platelets were 47,000, down slightly from 51,000 the previous week. He has been acting as if everything were fine, not overly tired, although he is bruising more than his usual.
At this point we are praying for his body to recover enough this week so we can restart his meds, and would appreciate your prayers as well!
For all of this we are extremely thankful.
At his last routine visit for treatment back in March, his counts were great. A month later, his hemoglobin and platelets and eventually his ANC dropped, the lowest we have seen his hemoglobin drop since intense treatment. His Dr. believes that Titus' marrow is more sensitive to his chemo than the "normal" (whatever that means), his platelets and hemoglobin have always run a bit lower, but never at a concerning level during maintenance. We are now beginning our second week of him being on a chemo hold and as of Wednesday, his counts were slowly beginning to rebound. We go in and have labs checked again this coming Wednesday, and will begin chemo again at a lower dose.
Dr. isn't wanting to hold his chemo any longer if we can help it. At this point, the goal of his daily and weekly home chemo doses is to not only destroy any remaining cancer cells, but to also keep his marrow suppressed enough that it won't create more. The longer he isn't receiving his meds, the higher the risk for relapse at this point - so while his body needs this break, it is slightly nerve wracking.
At last check his hemoglobin was 6.9, up from 6.7, and platelets were 47,000, down slightly from 51,000 the previous week. He has been acting as if everything were fine, not overly tired, although he is bruising more than his usual.
At this point we are praying for his body to recover enough this week so we can restart his meds, and would appreciate your prayers as well!
Wednesday, March 19, 2014
Welcome
Titus participated in a clinical study - documenting how quickly his body metabolizes his oral chemo in pill form, and then the next day in liquid form. The end result hopefully being making the liquid form available nationwide for kids who have trouble swallowing pills. He had his blood drawn over a dozen times each day, and got to play all day - we had a fun two days!
Titus received his "Beaded Journey" beads (not complete until treatment ends). Having something that he can look at and hold and count is very neat. Each bead stands for something that he has had to do, or had done to him during his treatment. Each poke, each chemo, each test.
Alot of time has passed since our last blog update. Titus passed his two year mark since his diagnosis on March 1st. He is going to be six soon! He is reading, doing math problems, being a wonderful student and big/little brother. He has had his routine treatments every 12 weeks, the last one being last week on the 12th. He received methotrexate via a needle into his spinal space (lumbar puncture = LP), he also received vincristine through his port in his chest, both of these are chemotherapy drugs. He also began his 5 days steroid pulse that day, thankfully he finished that up before spring break this week! Titus went to school Thursday and Friday after his procedure. He was pale and worn out from chemo, and a little grumpy from his steroids, but made it through with a smile on his face. For the record, he isn't made to attend school, I rigorously question him about how he is feeling and if he feels like staying in bed, and his teacher and I chat off and on. He called me Thursday afternoon and requested his pain medicine, but wanted to stay at school. Like I said, so brave!
If you search for the post labeled "Counts..." you can compare these if you want.
Titus' platelets were 72,000 on Wednesday the 12th, this number is lower than I've seen it in awhile (6-9 months) and is lower because his oral home chemo med was raised 25% at his visit in February due to his ANC being too high. This may get confusing...bare with me...His ANC (absolute neutrophil count) measures his immunity essentially (it is a part of the white blood count) and has to stay between 750 and 1500, this is how they measure if his oral chemo is at the correct dose to do what it is supposed to be doing...suppressing his immunity enough to hopefully prevent any more bad cells from being produced (as well as killing any remaining bad cells). His ANC had been above 1500 in January and February, so at February's visit his at home oral chemo dose was raised. At his visit last week, his ANC had risen even higher. This can be caused by a number of things, which is why his chemo isn't adjusted based on just one lab test. Next month's visit will determine if we raise the dose again. I am hoping his ANC goes down to the desired level and stays there. I'm also hoping that his platelets will hold steady despite the increase in his oral chemo last month. I will update after his next lab check next month.
Thank you for those of you who are still around and following Titus' journey, it means a lot knowing we have your prayers and support. Much love from the Beeler's!
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