Hey everyone, it looks like we hit our first speed bump of the transplant. The bone marrow biopsy came back and initially looked good, but we found some disappointing news in the analysis.
Cameron has been taking blinatumomab (immunotherapy) to target the strand of leukemia he has. While the results showed that it has in fact removed that strand, two new strands have showed up. The mutations allowed the cancer to remain in his system and slightly increased its presence (from .01 to .03 percent). Meaning, Cameron is not in remission as planned and necessary for the transplant.
To combat these new strands, Cameron will be taking a new immunotherapy inotuzumab for the next 3 weeks.
Radiation and bone marrow transplant will follow on the fourth week as long as the new immunotherapy proves successful.
Thank you for all your support and prayers. He is doing fantastic and is full of energy! On the bright side, he gets to enjoy 3 more weeks of summer outside of the hospital 🙂
Just want to give everyone an update on Cameron’s schedule and what is taking place up until transplant.
Tuesday June 18: he will be admitted to the hospital for a dental surgery to remove some baby teeth that have rotted a lot. They are doing this to help prevent any infection that may arise once transplant comes due to him having a very low immune system during that time. They will admit him over night to start on antibiotics and make sure no infection occurs during this time.
Wednesday June 19: he will be sedated again for surgery. This will be for another spinal tap and bone marrow aspiration.
Thursday June 20: he will be released to come home.
Monday June 24: admit to the hospital to begin preparing for transplant.
June 25-29: radiation and chemo. He will be receiving radiation at UC twice a day(once in the morning and again in the afternoon) and chemo everyday. This is full body radiation except for most of his lungs will be protected. Only a small part of his lungs will receive the radiation. They will transport him each time, just a few blocks down to UC for the radiation and then bring him back to children’s. The chemo he is receiving is one that he has previously been on but it will be in a higher dose than he had prior.
Some of the side effects during all of this will be fatigue, nausea and mouth sores. We have been told to expect him to be in quite a bit of pain but they will do their best to keep the pain under control with such things as a morphine drip.
He will have a few days for rest and then transplant will take place either late on Tuesday July 2nd or early Wednesday July 3rd.
At the earliest he will be out of the hospital within 30 days. We have been told to expect more around 60-90 days. It’s all dependent on how his body takes to the transplant as to how long he will have to be in there.
Thank you for your support and prayers. I will keep you posted through the process.
Sorry for the lack of posts… I haven’t had much information to pass along. But it is looking like we are getting a clear path forward now and would like to share.
Cameron is going to have a bone marrow transplant as the chemo proved not to be as successful as hoped. So now we are going to focus our efforts on preparing for it. It will be a tough couple of months for the little guy, but if everything works well he will be cured by the end of the year. Our schedule looks like this:
This week Cameron is back at Childrens starting immunotherapy. Cameron will be receiving blinatumomab this week and a new picc line going through his chest. Monday he underwent surgery and had the new picc line installed. Everything went well.
After this week, he will have a backpack on him that will be for his immunotherapy through June 17. After that he will undergo radiation therapy at UC hospital for a week.
At the beginning of July he will have his transplant and will be monitored at the hospital for 3 months while they bring up his immune system back to normal.
If all goes well this will cure him. I am praying and thankful for all the support we have received. Thank you.
Yesterday Cameron started his second 4weeks of consolidation and had to stay overnight at the hospital.
The biopsy came back, and he is at 1 percent leukemia present. This is much lower than when we started, but unfortunately much higher than they want it (<.01%). It looks like we are looking at a bone marrow transplant. This isn’t completely certain yet, but looking more likely.
If that is the path we go, he will finish the 4 weeks of chemo, then we will begin immunotherapy and radiation therapy to get his counts lower for the transplant. The transplant will put him back in the hospital for another 1-3 months. But, after that, as long as everything goes well, he will be cured! So there is a possibility that this could be over by the end of the year.
More to come on all this as we get closer. As for now, hes doing great and enjoying the spring 🙂
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.