Once again we win. We have since Eli was diagnosed always prepared for the hardest and hope for the best and for this treatment we were prepared for what we thought is this basically a type of jail. Completely wrong BH. Extremely nice and caring staff so far and it is basically the same type of room that Eli has always had other then a lot less private as there is a glass wall so that the nurses can constantly keep an eye on Eli and the IV and everything else.
Eli got to CHLA on time at 2PM and after being checked in and reviewing some of the rules and procedures was led to his room. After relaxing and playing games finally at 8PM they hooked up the IV which is a medication to try to help avoid some side effects that the chemo can cause. At midnight they will IYH begin hydration for about 4 hours and at 4AM they will begin what they call high dose chemo. During the chemo to make sure all is going ok in a 2 hour span they will draw and test his blood 9 times!!! BH all this is done thru his line and hopefully they will be quiet so that I and Eli will be able to sleep thru it. This will be what they plan on doing for the next 5 nights beezrat hashem.
Haven’t asked many questions as to what takes 30 days as we are just hoping to get thru this as easy and quick as possible. Thanks to everyone for their words of chizuk before we went in and for the constant tefilos. We look forward to being zoche to see Elimelech Ben Basya have a redua shelayma.
What a day. Eli was full of strength, humor and great energy all day and we really took advantage of every minute. Eli had a checkup at CHLA late in the afternoon and agreed to leave the stroller at home and walked around the hospital and everywhere alone with BH no difficulties. When we got to see his DR we finally got the word that bli ayin hora Eli is up to par and they have a bed available for him to begin transplant on Thursday at 2PM IYH. While we have been dreading this for a long time at the same time we are also very happy that BH he has reached the level where the DRs are comfortable enough with the progress and the scans to go ahead with it and hopefully Eli will get thru this in record time.
We were also explained and told what to expect and a lot of the basic rules. The transplant is expected on average to last 30 days and during that period Eli can’t leave his room, can’t have more then 2 other people in the room (including parents), and no one other then Eli may eat in his room. They will require him to take a bath daily, brush his teeth and clean his mouth many times a day. There are MANY other requirements and regulations all to benefit Eli some that we know about and can deal with others that we will learn and deal with as time goes on. Anything that comes in his room must be able to be thoroughly cleaned and should be laminated as each item needs to be wiped clean. Shoes have to be covered so that no dust or germs can be brought in. Hands need to be washed for 2 minutes each time one enters the room and the list goes on.
We hope with the help of the RBSO that this will go as quick as possible and with as little pain as possible and with the most benefit possible for Elimelech Ben Basya so that we can help him continue on this very long road to his refua shelayma. Please continue to have Eli in mind in your tefilos as he will most definitely be needing them and counting on them for the next few weeks especially. Tizku lmitzvos.
As the days pass Eli continues bli ayin hora to get stronger. He was in a great mood today and enjoyed the day to its fullest. It started with a small outing the morning with Bassy and was followed by his rebbi Rabbi Jacobs coming to learn with him. When I finally got home we got out together to get some games he wanted. He then ate a huge supper and decided he needs to go for a walk which we decided to go to our shul where a pidyon haben was taking place and ate some more there as well.
The day didn’t stop there as we then stopped by bubby and zaidys house to say good bye to them as they go on a short trip back east for a first cousins chasuna and being that we are unable to go we decided to make our own dance at home and it lasted quite a while with Eli being the choson and dancing up a storm. He really enjoyed it and definitely had one of his most memorable days IYH it should only continue like this.
Typical CHLA style we didn’t get any further info yet as to when exactly they want Elimelech Ben Basya to check in for transplant. Their communication skills are horrible to put it mildly but at this point we are not complaining as we are taking advantage of every moment we have with Eli. I hope to find out if we are still going to start transplant on Thursday or if it will be next week. Please continue to daven that we should be zoche to such beautiful days and IYH bkarov with Eli having a refua shelayma AMEN
Another beautiful relaxed day for Eli. Eli spent the day mostly at home and in the backyard with the rest of the family. This afternoon he got a nice surprise visit from one of his former rabbeim which he really appreciated.
We should IYH be finding out on Tuesday when for sure they want Eli to check in for stem cell transplant but as of now it seems like it will begin on Thursday.
We hope to continue seeing Elimelech Ben Basya bli ayin hora regain more strength and weight as he has the last few days and weeks and we hope that the transplant will be as successful and as quick as possible.
BH another relaxed uneventful day. We hope to continue helping Eli gain some strength and weight before he needs to check in later this week beezrat hashem. Originally they told us he will begin on Monday but due to a shortage of beds as of now the hope is for Thursday.
We hope it will be as easy as it can possibly and hopefully be and that the stay in the hospital will accomplish what they hope to accomplish in the shortest period of time as we continue to do everything possible to help Elimelech Ben Basya have a refua shelayma BKAROV
Eli had a beautiful relaxed Shabos like he hasn’t had in a very long time. He bli ayin hora felt great and was full of energy and humor. We look forward to these types of Shabosim and know there are many more ahead.
Eli does not have anything on the schedule this week other then the big day on Thursday which is the planned check in date for the stem cell transplant. I will update more info when I have and know it but we look forward to giving Eli a fun and relaxed filled next few days.
Please keep Elimelech Ben Basya in mind in your tefilos. A GUT VOCH
No news is good news. Other then a required dental appointment and a echocardiogram which took a few minutes but had Eli waiting for 3 hours until they called him and BH also came back that all was good. IYH the next few days we will be able to spend at home and hope to relax and enjoy every minute we have with Eli until we find out when they want Eli to check in for the transplant. There are no more appointments until transplant and all has been cleared to begin beezrat hashem.
We hope to only continue having good news and easy days with Elimelech Ben Basya but as always please keep him in mind in your tefilos.
Today was the day we have been waiting quite a while for. We had a few scans scheduled for today as then to meet with the DR for the results. The first scan was the longest and most important its called a MIBG scan and it scans the body from head to toe. This is the second time Eli has gotten this scan the first time being right after diagnosis. After the scans were all done we were scheduled for a 1:30 meeting with the DR. When 3:30 arrived and we were still sitting in the waiting room our stress level rapidly climbing. Finally we met with the Dr at 4PM.
The long wait was very well worth it. We got reports bli ayin hora that we hoped and davened for but really didn’t expect them to be this good this early. BH the bone marrow biopsy came back negative. The MIBG scan which the first time around showed that Eli had disease in numerous bones and different places all completely disappeared. It was an extremely happy day with only good news and I don’t quite have the right words of how relieved we felt when we finally heard it. The last 6 months haven’t been easy to put it mildly but BH as the days continue we hope to continue to only beezrat hashem have such good news and hope that Eli with the help of the RBSO and his shlichim to have only clean scans.
On Thursday Eli is scheduled to be back in CHLA for beezrat hashem a few short appointments all in preparation for next weeks transplant.
Our next test begins sometime IYH next week and it will be a real test on our sanity and strength. Elimelech Ben Basya will be going thru what’s called high does chemo together with stem cell transplant which we are told to plan on being in CHLA about 30 days straight for. They have extreme rules all of course only to benefit Elis health but they are not easy to comply with. BUT as we have so far and plan on continuing to do what we have to do until we are zoche bkarov to see Eli have a refua shelayma. It is only thru ours, our family and friends tefilos, kablaos etc that we have been zoche to days like today and that will also be the only way we will be able to continue to fighting this machla until we have nothing less then what we hope and daven for Elis refua shelayma.
Today went BH exactly as planned for Eli starting with a nice breakfast a good long walk with Bassy and a scheduled short appointment in CHLA at 12PM. Today’s appointment was just to inject into his line some medication to help with the scan IYH scheduled for Wednesday. We were out of the hospital in a pretty short period of time. This afternoon a Chai Lifeline volunteer to Eli to the Santa Monica Pier which he really enjoyed.
Wednesday Eli has many separate appointments in CHLA starting at 11AM with the MIBG scan which takes about 90 minutes. It scans Elis whole body to see if the cancer in his bones has gotten better, disappeared etc we IYH are hopeful for only the best results. That will be followed by a dental appointment and that will be followed by a long meeting with Elis Dr to update us on the results of the scan as well as results from Fridays bone marrow biopsy. We will also be given some or most of the rules and instructions of what’s IYH planned for next week which is the stem cell transplant. What we know so far about it is that it will require Eli to be inpatient in CHLA in a very sterile environment for roughly 30 days straight. There are going to be some relatively better and easy days IYH in there and we have been told to prepare for some very not fun days in there. As always since Eli was diagnosed we have planned for the hardest and hoped for the easiest and for the most part BH things have been bli ayin hora very good.
Elimelech Ben Basya and all of us are hoping that we will continue to hear only good reports and updates. We hope to get the best results possible and continue to be able to help Eli fight this machla as we do whatever we can to fight this disease until Eli is IYH fully recovered and disease free BKAROV.
Eli had another uneventful relaxed day today. After realizing once Eli was in CHLA with Bassy that I had the wrong date for the appointment which is really scheduled for Tuesday Eli spent the rest of the afternoon eating and then heading to a indoor arcade room. BH the stroller was left behind again as we are bli ayin hora seeing a very nice improvement in Elis strength department. Later in the evening we were invited to a private kesivas osyios of a sefer tora bzchus refua shelayma to another young LA girl who had the same machla as Eli and is BH in remission for a while. We had a chance to help along with a sofer along with many other families with children whom are cholim arranged by Chai Lifeline to write an oys.
On Tuesday Eli has a short appointment scheduled in CHLA in preparation for Wednesdays scan. Hopefully right after the scan we will be able to meet with Elis Dr who has been on vacation for a while for a update on the results and the plan for the stem cell transplant.
We look forward to hearing continued good news for Elimelech Ben Basya bsoch shaar choley yisroel as we look forward to seeing them all be zoche to a refua shelayma BKAROV