This past week had many ups and downs, and I have been hesitant to post anything because I really wasn’t certain on much. For the past week, Cameron’s fever had subsided and has more energy. His anc number skyrocketed to over 2500, but had since fallen to only 360. He’s also been having a stomachache these past few days, so it’s been hard to get a read from the hospital what exactly is going on.
Today we got the news Cameron will be discharged! And he’s going to be discharged today, like this evening!
We go back in for a spinal tap on Wednesday and next Wednesday for his biopsy. Just to clarify, this discharge really doesn’t have much to do with his leukemia progress, it’s just that he’s healthy enough to leave the hospital. News on the progress will come next Wednesday with the biopsy. But at least he’s home!
I’ve been reluctant to write a post lately because I wanted to have answers to say, but so far I don’t have any. Cameron has been having high fevers (103-104.5) and high heart rates ( 170+) for the past week. He has had CT scans and blood cultures that have all came back negative, leading us to believe it’s not baterial. The past few days they have included nose swabs to examine viruses.
So far… everything has been negative. They have checked just about everything but to no avail.
Cameron will have another CT scan in the coming days and he will be monitored as usual. We’re hopeful of some answers soon.
On a good note, his nutraphils (ANC) are rebounding and are 440 today. They have been sub 100s for weeks now.
It looks like we have a blood clot that formed on his right arm near his picc line. They started giving him lovenox, a blood thinner, to treat it. Unfortunately this is a shot administered at the stomach. He will have one shot every 12 hours for minimum of 6 weeks. To make matters worse he will have to have a platelet count of >50 to be able to get the blood thinner. So this means he will be getting a blood transfusion nearly every time as well.
Chemo has been taking a toll on him recently. Lots of sleeping and random aches. He’s off the steroids now, and has lost about 7 pounds from his heaviest. This weekend hasn’t been that great but it must get better soon.
Our next biopsy is coming up on Wednesday. We will look for some good news then.
Correction: he is only receiving a spinal tap Wednesday not biopsy.
Cameron had a biopsy on Monday. Monday was the last day of the induction stage (Day 29). The results came back late Tuesday, and was not that great. I’m going to just write out the facts and everything we know from the meeting with the doctors.
20 percent of his bone marrow was luekemia. This is quite high considering most children at the point would be at trace levels. The doctors are growing doubtful the chemo is going to work alone, but are wanting to try four more weeks of chemo. The schedule is crazy, he will have 15 consecutive days of chemo with a total of 21 treatments; 3 doses today, 2 doses a day for the next 3 days, 1 dose each day through the following 11 days, and 2 doses on the last day. To put this in comparison, in the 29 days of induction prior, he had a total of 9 doses (and that was the very high risk schedule). We will be doing a spinal tap and biopsy every week going forward as well. The dates I have are March 20, March 27, and April 3.
These are different chemos, and he has been taken off steroids as well.
Plan B is looking more of a reality. Plan B is CAR T Cell Therapy. If after the next 4 weeks, the biopsy shows cancer still in his marrow, they will discontinue chemo treatment. There is more involved with this, but they didn’t want to discuss it now. This is a good write up on what CAR T Cell Therapy is: https://www.cancer.gov/publications/dictionaries/cancer-terms/def/car-t-cell-therapy
To be proactive, we will also start preparing for Plan C, a bone marrow transplant. Next week the doctors will start screen family members for a possible donor. Carson, his brother, is the most likely match for this.
This is what we know. One more month in the hospital until we know more. Thank you all for your support and prayers. I truly do appreciate it. God bless.
I was told erroneous information earlier this afternoon regarding Cameron being in remission. Unfortunately it is the opposite. I will write more thoroughly later this evening but for now please disregard my last post. Please pray for us.
It appears Caneron his reacting very well to the changes to his chemo treatment. I’ll try to summarize some of the issues we’ve been working with and goals we are hoping for:
First – being in remission by March 12.
March 12 is day 29 of induction stage and is the day where most kids would be in remission. Unfortunately with the iamp21 issues, Cameron did not have that great of a chance for this to happen. We find out on that day if he is by taking a bone marrow biopsy, but a marker we watch now is blasts count. It tells us if leukemia is still in the blood. So if there is anything greater then 0 on this count (cancer in the blood), than likely the biopsy will come back positive (cancer in the marrow)
Todays blasts count is at 3! (Need to be 0, was 60 last week)
Second – leave the hospital to start outpatient consolidation stage by March 12
I know nobody wants to leave this hospital more than Cameron, but regardless if he is in remission or not, some other criteria has to be met for us to leave. One is ANC. This is a measure of his immune system. This number has to be above 200, and, so far, everyday has been floating around 20-70
Today his ANC number is 250 (200 needed to leave the hospital)
I know this is just one days’ numbers and these numbers jump around quite a bit, but it truly remarkable how much they have improved, and is definitely trending for the good. Happy Saturday!
Today we had our second (and last) chemo treatment for the week and did some walking for physical therapy.
Pretty laid back Friday. We were pretty tired from last night so just laid around most of the day.
The key number we watch is the blasts count. This number is the amount of abnormal cells counted in a random sample of 100 white blood cells in his blood. What has been concerning over the past few weeks was the numbers were not coming down as they should. When he was admitted it was in the 40s and even last week it was as high as 60.
Finally we have seen the numbers come down! Yesterday it was 11 and today it was 10. We are so thankful to hear this good news.