BH we got home before 11AM and already we can see an improvement in Elis strength and mood. Always a short while after getting home his mood, strength and appetite grow.
We are looking forward to a much needed restful Shabos at home.
Please as always keep Elimelech Ben Basya in all your tefilos.
A GUT SHABOS
I am finally able to write fully what is going on here with Eli.
We have been warned and told that specifically this round of immunotherapy is EXTREMELY painful and best case scenario is that it gets done over the 10 hours a day for 4 days but they allow for 20 hours a day because most people can’t tolerate the pain so they slow it down or even shut it for periods of time.
Immunotherapy as I understand it (and yes I’m probably not exactly correct) is thru cancer research they have realized after injecting mice with neuroblastoma the mice with their own antibodies have been able to fight it and be cured without treatment. What they are ultimately doing is injecting these antibodies to help the body have more weapons if CV the machla ever tries to come back. So basically they are taking antibody from mice and injecting it thru IV into the human body. Since the human body doesn’t have the same genes or antibodies that mice do, the body tries to fight this and that’s what causes the pain. This weeks antibodies were 2 different ones when its usually only 1 antibody that’s why its generally the most painful.
So here’s the story: We prepared ourselves emotionally, physically and every way possible to make it in our heads as easy as possible for Eli and ourselves. I’m not sure in what or whose zchus but putting it mildly we may of had the easiest week in CHLA since Eli was diagnosed. To say that it was pain free is an understatement. Not for one second did Eli have pain and the DRs and RNs were completely shocked as they have seen kids have less pain then others but to have none is never seen. He didn’t push his morphine drip button once. In comparison the first week of immunotherapy Eli was pushing it almost as often as it allowed him to.
The IV ran every single day and not once did it need to pass 10 hours started at 12 noon and was done every day by 10PM. Aside from a few fevers which are almost for sure going to happen and 2 blood transfusions this week couldn’t of been more picture perfect as far as the DRs are concerned. They didn’t want Eli off the floor as they needed to monitor him for CV any side effects. But Eli said to bad we are going for a walk outside which we do every day they allow and he’s up to it and we did just that and felt so good after.
The reason I did not elaborate all week was simply for the fact that whenever we celebrated anything early the next day didn’t turn out the way we would of liked. And being that this week was planned as being the hardest and was the easiest I didn’t want to have any ayin horas.
Eli was visited by a few friends and he appreciated and enjoyed every single one of them. He was in a great mood which BH lasted all week long. He also has a new addition to his bed as he got a new HUGE teddy bear with the words “WE LOVE YOU KING ELI” from his aunts and uncles and he loves it.
We look forward to leaving CHLA for IYH a 3+ week break of immunotherapy. Eli hasn’t had a normal night sleep all week as they need to give tylenol every 4 hours and check vital signs every 2 hours. They also had him on medication at night which caused him to use the bathroom more often then usual so all in all we haven’t slept all week and we look forward to making up for it over Shabos and the next few weeks of “vacation”.
The plan is after a night of observation and his TPN IV is done to be discharged sometime in the AM hours on Friday. As long as Eli has the strength which we hope he will have the plan is to send him to school as often as possible for as many hours a day that he can handle starting next week.
This is all great news and we hope the news always stays as good if not better for Elimelech Ben Basya as we continue helping him get to the ultimate goal of a refua shelayma. Please as always continue to have him in mind in all your tefilos.
One more day like these past 3 days and I’ll be able to explain. Halevay vayter
Please just continue as always to daven for Elimelech Ben Basya.
BH all is as well as can be and we hope for another 2 days like we had the last 2 Bli ayin hora. I will elaborate IYH Thursday night.
Elimelech Ben Basya bosch shaar choley yisroel amen
The IV immunotherapy is off and I won’t say more then “halevay vayter”.
Please continue davening for Elimelech Ben Basya.
After a good night sleep Eli woke up and right away decided that today was the day he is going to have his cotton candy sale which he’s been waiting for to do a few months. Thanks to the many people that came and bought cotton candy Eli really appreciated it. Towards the end of his sale after being busy for a while with it he was exhausted and went for a rest.
At 8:30PM it was time to head back to CHLA. After going thru the admission process and getting to the room we realized why Eli was a little more weak then we expected him to be as his blood counts were low and he needed a blood transfusion which BH thanks to Bikur Cholim he has “yidishe” blood in a blood bank always waiting in case needed.
We are being told this week may well be the most brutal part of this entire treatment since diagnosis!!! It is a mixture of 2 different immunotherapries and it isn’t planned to be pleasant. If it goes as well as it can it is about 10 hours a day if it runs continuously if they need to turn it off or slow the rate down it will take longer. This will go on for Monday, Tuesday, Wednesday and Thursday. Once its shut Thursday night they will keep him in CHLA until Friday morning for observation. After that we will look forward to a 3 week break of immunotherapy but the first 2 weeks will be back on accutane medication again.
These next few days will be very trying for Elimelech Ben Basya and he and we will need a lot of extra davening to get thru it and we appreciate anyone that does just that.
Eli is BH feeling very well today and his cotton candy machine is finally working. Eli will be selling cotton candy, soda and water for $1 each in our driveway today from 2:00-3:00. If you can make it he will be so happy to see everyone. Our address is 176 S FULLER.
Eli came home Friday afternoon exhausted and very unhappy. He got into bed at 5PM for the night. After a little talk he decided at 615 he wants to go to shul. He suddenly got a 2nd wind and was up for part of the meal and ate a decent amount as well. Shabos morning he woke up in a great mood and between going to shul, eating the seuda and a little bit of relaxing he had all in all a very good enjoyable and restful Shabos BH.
We hope this only continues and gets better and stronger Sunday as we prepare for another round in CHLA starting Sunday night and IYH getting out Friday morning.
We have been told that this week will probably challenging for Elimelech Ben Basya and we hope they are wrong but please as always daven on his behalf that it going by quickly, easily and IYH pain free. A GUT VOCH
Although beyond exhausted and weak Eli made it home a little earlier then scheduled and is now resting and hopefully will have somewhat of a relaxed weekend. Its been a long week and we can use the sleep and relaxing and beezrat hashem Eli will do just that.
Sunday night its back to the grind for another round of immunotherapy. We are done round 2 of 7 and next week will IYH be the 3rd round.
Please daven that Elimelech Ben Basya should regain some much needed strength so he can continue the fight next week. A GUT SHABOS. A GUT CHODESH
Eli is very much looking forward to getting a short break and be home for Shabos and so are we all. I finally explained to the nurses that they need to coordinate their night to come in as little as possible so that hopefully Eli can have a semi normal night of sleep. Let’s hope they listen.
The plan for Friday is to unhook Eli about 2:30PM from the IV and then observe him for about an hour and then discharge him. So beezrat hashem Eli will be home around 4PM for about 2 days before we got to come back on Sunday night to start next round and another week of immunotherapy.
Please continue to have Elimelech Ben Basya in all your tefilos.
For the last few months a group of our close friends have been arranging to join Chai Lifelines marathon taking place in Florida on 2/2/14. They have already 12+ people just on the “team Eli” group along the many others that run for Chai Lifeline. To do so every runner goes through MONTHS of rigorous training which they have all began doing already. This is one of the bigger fundraisers for Chai Lifeline who anyone who has ever needed their services knows how vital they are when a family member is going through a illness. And for those who BH haven’t had a sick family member and beezrat hashem will never have should know that they are simply a lifeline. Always there and always thinking about what they can do to take their chesed to the next level.
Our family will forever be makir tov to them for what they have done for us and continue to do. Every runner that signs up is essentially pledging $3600 to join the CL team. Aside from the training they do they must also raise the $$. On the link below there is a team Eli page which shows how much together the team has raised but you can click on each persons name and donate directly to their pledge. We beezrat hashem hope as a family to be there together with Eli who will be pushed in a wheelchair/stroller by one of the runners during the marathon
I look at this as a insurance plan that hopefully your donation should chas vshalom never be used towards your family or anyone you know but for us its the ultimate lifeline. Again I ask that anyone that can should please donate whatever they can “every dollar counts”. If you can donate $5 great if you can do more even better. If you can fully sponsor a runner would be amazing. There is also nothing wrong with a runner more then fulfilling their pledges for this great and worthy cause.
Anyone wishing to join the team should please email Ayalaback@gmail.com and anyone wishing to donate should please go to this link: http://www.teamlifeline.org/myteam.php?myid=88.
All I can say simply is “tizku lmitzvos”
The Gradons