Bli ayin hora Eli made it school for the short day on Sunday and really enjoyed it. Erev RH Eli was visited by his rebbi Rabbi Trainer and was given a lot of the sheets and papers that the rest of his class got and read thru all of them over YT.
Today once again we were happily surprised that BH Elis blood counts climbed and are almost normal and therefore did not require any transfusions so he was in and out in under an hour. After getting home and eating which he’s been doing a lot of lately he decided for the first time this year to try out english class and it worked out very well.
Thursday we will IYH meet the DR and hopefully get an idea and picture of what the plan for the next few months are such as what treatment, when, where etc etc.
Please continue having Elimelech Ben Basya bsoch shaar choley yisroel in your tefilos.
BH Eli felt pretty good over RH and made it to shul for Shofar and was at all the meals eating a lot more then he usually does lately. We hope he will make it to school on Sunday and go as often and as long as he is up to it.
This weeks plan is Monday to go to the infusion center and get any transfusions he may need. Later this week we will meet with the DR and hear what ideas and treatments they plan for the future for Eli.
Bli ayin hora the very good news we got on Erev RH is a complete miracle to put it mildly but there still remains a lot to do and many more months ahead of different treatments.
As we have done until now and will IYH always continue doing is making sure that Elimelech Ben Basya gets the best treatment possible as we continue on the road beezrat hashem to nothing less then a refua shelayma. A GUT VOCH
We got just now the BEST news possible. The CT showed the MAIN MASS IS GONE. Complete miracle to put it mildly. The MIBG showed major improvement.
Please continue davening that the news should always be this good for Elimelech Ben Basya and all cholim.
A GUT YUHR
While we don’t have the scan results yet and we wait and pray that we get good news I would like to take this opportunity to thank the many people who we know about and the many we don’t know about. There has been and endless amount of people and a endless list of favors, tefilos etc etc that have been done and continue to be done on behalf of our Elimelech Ben Basya.
To the many people that have called, emailed, texted sent letters, and all the readers that follow Elis situation wishing us KVT we take this opportunity to wish you and your family “kol mishalos leebecha ltova” and that you should all have a year of only happiness, health, parnassa, and nachas. And like one of my friends writes me every Friday “Keep Smiling” so should be true to everyone. Being upbeat and smiling is the only way to live with today’s nisyonos as kvetching and being sad just makes everyone else around you feel the same and it definitely won’t fix any problems.
Kesiva Vachasima Tova
Malkiel, Bassy, Sori, Eli, Ari and Yaakov
We hope to get results and post them before RH
The frustration today hit a all time high with every nurse and receptionist doing what they do best drink coffee and waste children and their families time. Got to CHLA at 7:45AM to watch the nurse who has a very big job of taking one ounce of contrast and pour it into a bottle of powerade sit on her cell phone for 50 minutes until I lost it on her and she finally gave Eli the drink which needs to be drunk over a 90 minute period to help with the CT scan. While he was drinking the contrast we went to ask his 12:30 appt if they can give him the thyro shield drops he needs prior to MIBG injection. The receptionist said no because “we need to give it to him right before the injection” ok very well understood. When the CT was done Eli went home since there was a few hours in between appointments.
When Eli got back at 12:15 for his 12:30 appt they once again had him sit there doing nothing instead of giving him the drops so that the 45 minute in between drinking the drops and injection can start. Finally at 1:15 they came out to give him the drops only to make up a new story that we were supposed to bring the drops from our house which after having 6 MIBG injections we never once brought. So here we go again they need to order it from the pharmacy which took an additional 45 minutes. So instead of being there from 12:30-1:15 we were there for closer to 3 hours all in the name of laziness on the part of the staff at CHLA.
Anyway the CT scan is done the pre MIBG scan is done and IYH on Wed at 8AM we are back for a GI appointment followed by the MIBG scan at 11AM. The scan takes about 2 hours and we hope to have good results before YT starts.
We are looking forward to ending off the year with good news and to start the new year on a good start with a year of only besuros tovos. Please continue having Elimelech Ben Basya and all cholim in all your tefilos.
Bli ayin hora for the first time in many months Eli went today to the infusion center to check his blood and get any transfusions that he needs. BH we got good news NO TRANSFUSIONS NEEDED and instead of spending 6-9 hours there Eli was out in a hour which is how long it takes to draw the blood and get results.
Over the last few days Eli has been resting and regaining strength. Being on IV antibiotic 4X a day hasn’t been easy to do but it seems beezrat hashem to be doing what its meant to do as he seems to be feeling a lot better.
This past Shabos Eli got out with us to join in a close family friends Bar Mitzva of Michael Bess. We owe for many things hakaras hatov to his parents and grandparents but a special hakaras hatov to his father Yoel Bess who has set up and maintained this website www.eligradon.com on behalf of Eli since day 1. Our brocha to Michael and Yoel and family is that every Brocha that was received this past Shabos should be mekuyam.
Tuesday and Wednesday IYH we will be back in CHLA for scans. These are by far the most important scans Eli has had since being diagnosed. We daven that Elimelech Ben Basya should get only very good results as we continue on this very long road to a refua shelayma bkarov.
After a sleepless horrible night with a careless and a almost harmful nurse there is good news ELI IS HOME. Its been a very trying and at points scary 6 days but BH things are ok now. Eli will need to continue IV antibiotic 4 times a day for the next 10 days but as hard as that is anything beats being in the hospital. As we have seen so many times bli ayin hora the second Eli walks in the door of the house he’s a different happier person and today was no different.
We look forward beezrat hashem to relaxing at home for the next few days before we have a busy few days next week. Monday is back at the infusion center for any transfusions that Eli may need which lately he’s needed blood and platelets at least once a week. Tuesday is CT scan in the morning followed by MIBG injection in the early afternoon and then Wednesday is MIBG scan.
Elimelech Ben Basya lrefua shelayma bsoch shaar choley yisroel amen.
Bli ayin hora today saw more improvement and the hope is that they will discharge Eli sooner then later. Eli will need to get 3-4 times a day antibiotic IVs to complete the 14 day cycle. Other then that his blood counts are very low as far as his ANC (neutropenic) which help fight off germs etc so until that improves he will be relaxing and beezrat hashem regaining strength at home.
Last night Eli missed an opportunity to have dinner with Doc Rivers (LA Clippers coach) arranged by Chai Lifeline but he was presented today with a present from him instead a autographed basketball from him and it hasn’t left his bed since getting it. Later in the day we had quite a few entertaining visitors which Eli really enjoyed.
Please continue having Elimelech Ben Basya bsoch shaar choley yisroel in all your tefilos.
BH all continues to go well. Although Eli is still in an ICU room he isn’t there because he needs an ICU room he’s there because they don’t have any available beds anywhere else. We are hoping that all continues to go well and that they will let Eli leave the hospital and continue the IV antibiotics at home to finish the 14 days needed at some point sooner then later.
Next week Tuesday and Wednesday Eli is scheduled to be in CHLA for MIBG injection, MIBG scan and CT scan. Based on the results of those scans the DRs will decide what to do next on the treatment plan.
Please as always continue having Elimelech Ben Basya in all your tefilos.
Bli ayin hora there is good news today. After a very rough 2 days Elis fever is IYH gone for good and he is off both blood pressure IVs. They were also able to remove the machine they had up his right arm artery to check his blood pressure constantly which was very painful and uncomfortable the whole time for Eli. The cultures are also showing what the DRs feel that they are getting the upper hand on the infection.
Eli is currently still in the ICU and will remain there tonight for observation to make sure he stays stable on the fever and blood pressure monitors. They hope to move Eli to a regular room sometime Monday. They will then decide how much longer they feel he needs to stay in the hospital. The hard part now is that the antibiotics has been harsh on Elis stomach and even though he hasn’t eaten or gotten TPN since coming to the hospital he is having extreme diarrhea 2-3X an hour. BH he is back as of tonight on TPN and hopefully it will help settle things and get Elis weight back on track.
Hoping to continue only having good news but as always please keep Elimelech Ben Basya in all your tefilos.