Eli since the last scan has physically grown causing the MIBG scan to take that much longer to get every inch of his body scanned. We got the results today and no complaints at all. The scans show that the disease is possibly less but definitely not more. The fungal pneumonia is gone. The good news is the urine levels which a few months back were literally 50+ times elevated with disease to now being less then 10 times elevated. Also Eli was getting platelet transfusions sometimes 3 times a day to control bleeding and BAH he hasn’t needed any and on the contrary his platelets are higher then they have been in many months.
This news is of course very welcomed and beezrat hashem the start of continuous good news. As soon as the scheduling is done Eli will start a new advanced treatment that is new to the neuroblastoma world. They will IYH do chemo and at the same time immunotherapy which is a double wame in hopes we can work on getting Eli to remission. It will be done inpatient for 5 days and can be done once a month. We hope and daven that this will be the solution in erraticating the disease.
Please as always have Elimelech Ben Basya and all cholim in your tefilos. A GUT SHABOS
BAH the last few days have been going very well with Eli getting out a lot and in a great mood. We hope this will be the permanent trend. On Tues Eli had a MIBG injection in preparation for WED morning MIBG and CT scan. We are hoping to learn from these scans what treatment will be most suitable for Eli. We hope to have Beezrat Hashem the good results before Shabos.
Please as always continue having Elimelech Ben Basya bsoch shaar choley yisroel in your tefilos
The last 2 weeks for the most park have been ok for Eli as he feels most of the time ok. He finished the chemo round and BAH didn’t have much side effects which seems to show that the first round of this type of chemo he wasn’t having side effects so much from the chemo as he was from the disease progressing. We hope that it has and continues to do what we need it to do which is stop the spreading and start curing. The levels on Eli’s urine test seem to show that it did something.
Aside from feeling weak Eli has BH been in a good and happy mood for the most part. He insisted on going right after finishing one of the days of chemo to visit his new cousin a few hours after the baby boy was born in a different hospital. He made it to the Sholom Zachor also with help. Unfortunately a few days after that he came down with a fever and landed in ICU for 2 days but all turned out to be negative and Eli as he promised made it to the Bris!!
On Friday Eli has labs and a DR appt to decide on when the next treatment will begin. On WED IYH we will redo the MIBG/CT scans to see what we have accomplished and if we should continue the current treatment or try something different.
Please as always continue having Elimelech Ben Basya and all cholim in your tefilos
Sorry for not updating here recently but there wasn’t much to update. Eli has been BAH under the circumstances been doing ok. Aside from 3X a week making sure all his labs are ok and getting transfusions when necessary BH Eli hasn’t been inpatient. We did make our fare share of ER visits for various different reason over YT but for the most part all went easy and quick.
Chol Hamoed Eli got out a few times and did a little bit what other kids his age were doing like going to amusement parks and spending time with his cousins and family. Eli didn’t get to shul much as he feels more comfortable in a relaxed chair or in bed but he did make it for a few minutes on Simchas Torah both at night and day.
We spent a very long day on Friday in the hospital starting with a CT scan on Eli’s lungs to check on a lesion that was seen in the last CT and make sure it didn’t get worse. They ruled it out as anything cancer related but did diagnose it as fungal pneumonia. Eli has been on medication for that already since they were being extra careful to cover Eli for everything from the past hospitalization. They may also put Eli on home IV for that but they haven’t decides and obviously aren’t overly concerned about this development.
Next they drew labs to make sure all was ok which showed that Eli needed a blood transfusion and BH he got one right then. That was followed by a echocardiogram in preparation for next round of chemo which they will have to repeat prior to each round of the chemo Eli is currently taking. And lastly that was followed by a DR appt where BH Eli was cleared to begin chemo once again.
This all brings us current to today where Eli is currently in CHLA getting chemo. It’s a 3 day course done in the outpatient part of the hospital. Today will be a long round of chemo followed IYH on Thurs and Fri by a shorter round. Monday once again they will do stem cell transplant in hopes of helping Eli’s platelets grow on their own. Many transfusions are expected to be needed as a side effect of this chemo.
As always please continue having Elimelech Ben Basya and cholim in your tefilos.