Today was the final day of this round of chemo. We got an early start to make sure we would get home in time for Shabos. We look forward to IYH a relaxing and enjoyable Shabos. We hope to find somewhere to take Eli indoor swimming on Sunday as he doesn’t have any line for the weekend and we hope to take advantage of being allowed to get wet with no restrictions.
Shabos hee melizuk urefua krova lavo for Elimelech Ben Basya and all cholim. A GUT SHABOS
BAH day 3 and 4 went well. Each day Eli gets home in the afternoon and relaxes for a few hours, enjoys long walks and then BH he has been eating a very decent amount. Friday will be the final day of this round. It is expected that Elis blood counts will drop and may possible need stem cells, blood and platelets again to help in the recovery process.
The good news is that Eli has been needing less and less pain pills each day which beezrat hashem shows that the chemo is having its effect on the cancer. We don’t yet know anything further planned after this round but it all depends on how Eli feels and his blood counts as for what they will then choose to do.
Please as always continue having Elimelech Ben Basya in all your tefilos.
Day 2 of 5 of chemo is done and BAH Eli is doing ok.
Not much else to say other then continue davening that Elimelech Ben Basya should be zoche bakrov to have a refua shelayma bsoch shaar choley yisroel
This morning Eli was back in CHLA for day 1 of 5 of chemo. We got the ok from Dr Kushner in NY that this is the way to go so beezrat hashem all will go well. Each day we will be spending about 4-5 hours in the infusion center for hydration then chemo followed again by hydration. BAH Eli did very well today and hopefully it will continue that way.
This evening Eli decided that he was in the mood for a steak which he hasn’t been in many months so we headed to Shilos and he ate and enjoyed and BH held down all of what he ate. Thanks so much to a special lady who sent Eli a large gift card to enjoy many more steaks.
Please as always continue davening for Elimelech Ben Basya.
On Thursday evening they finally started giving Eli pain medication orally instead of thru IV in preparation of going home on Friday. Over the night Eli spiked a few fevers some as high as 103 but the cultures kept coming back negative. I insisted all week that I would be leaving with Eli on Friday no matter what and I put major pressure on them to make that happen despite they reluctance for no good reason. BH it worked and we got home Friday afternoon at 4PM.
Eli is on a lot of pain medication but since getting home he has finally started eating some food for the first time in a week and has also taken a few steps which wasn’t physically possible for a few days.
Unfortunately the MIBG scan wasn’t what we hoped it would be but with the extent of pain Eli was having wasn’t either surprising that the cancer in Elis bones had started regressing. As a result and we won’t have full confirmation until early morning but most probably Eli will be back in CHLA Monday AM for 5 consecutive days of outpatient chemo. We will take one round at a time and decide as we go but he needs this in order to help reduce the pain he would be in without the help if very high powered narcotics that he’s currently on every few hours.
Again while this is far from good news it isn’t unexpected and shows that Eli needs intense therapy to keep away this horrible machla. As Eli has done in the past beezrat hashem will be the case now as well and he will IYH have strength, courage and will to overcome this with little to no side effects.
In the meantime please as always continue having Elimelech Bsoch Shaar Choley Yisroel in all your tefilos. A GUT CHODESH
BAH today was a lot better in the pain department and most of the pain that Eli was having is either gone or being controlled by the morphine. They were able at some points to completely stop the morphine and the rest of time on a much lower does then yesterday. Elis mood as a result was a lot better as well.
At 11:30 Eli like a champ began drinking the horrible tasting contrast for the CT scan and at 1:30 had the CT scan. It felt like days but finally at 6PM the DR came to give me the results and BH we couldn’t be happier with them. Based on the extreme pain Eli was having we were convinced that we were not going to hear good news but BH we were wrong and the CT remains clear. This was a tremendous relief to us and to Eli and beezrat hashem it should always be like that and stay like that.
On Thursday they will inject Eli with the MIBG injection so that 24 hours later they can see more clear what the MIBG scan shows. This scan was not fully clear last time but was much improved. The DR thinks that there maybe some active cells around his knee causing all this discomfort and with time and some minor treatments it should be able to be controlled. At this point in time Eli remains very weak but is slowly regaining his composure and funny upbeat personality. In the meantime Eli will need to stay inpatient in order to be eligible to be covered by insurance to have this expensive scan as they label it emergency and therefore don’t need to wait until the next scheduled one. So in other words we are hoping that Eli will be feeling well and up to discharge after this scan sometime on Friday.
All day Elis heart rate has been on the higher side and they have been closely monitoring it with no real explanation as to why it is like that. Late this evening Eli spiked a 102 fever out of no where and they as always took blood cultures which we daven will be negative when they have the results in 18-48 hours from now.
In the meantime please have Elimelech Ben Basya in all your tefilos and a reminder for those who can make it to a shul for Mincha on Thursday for Yom Kipur Koton which many times over have been told that this is a big segula and with the endless tragedies we have been facing may this be the start to only besuros tovos.
Today was a very rough day for Eli and rough on us to watch. Even with the many different pain IVs that they were giving Eli the pain persisted. He is on a full time morphine drip and they also allow him to push a button every 10 minutes which gives even more morphine.
This morning they took Eli down and had many different x-rays taken and those all came back negative for any fractures in his leg or anything else that an X-rays can show. They planned an MRI but there was no slot available for one. After conferring with the DRs they have decided not to do a MRI and instead will do a CT sometime on Wed. They took a urine test which takes about 24 hours for results. They have also ordered another MIBG scan which won’t take place until Friday with the injection on Thursday.
The DRs are trying to eliminate all possibilities as to what can be causing such severe pain. And that’s what these scans will hopefully help and show us if CV there is an issue or if its hopefully just a passing thing.
BAH late this evening they have begun to lower the rate of the morphine and so far Eli is tolerating it. The goal is to get rid of this pain or be able to manage it with pills as opposed to a morphine drip so that Eli can go home. BH he has had no fever or BP issues and beezrat hashem that will continue.
Unfortunately Eli is back at CHLA once again. Since getting back home nearly a week ago it has taken a lot longer then we had hoped and longer then we have seen in the past to recoup from surgery and the hospital stay. The last few days Eli has been complaining about having pain on and off and after taking some pain meds it would go away. This evening the pain became unbearable and therefore we took Eli to the ER. Also even though Eli has been eating quite nicely regular food he has lost a few pounds which isn’t terrible but definitely not good either. The pain was in his arm on Sunday and today its in his leg and no longer in his arm. The DRs don’t have an off the top of their heads explanation for this.
Since the pain meds he got in the ER at about 12:30AM only last a few hours they wanted Eli to stay so if he needs it again we won’t have to come back. So at 3AM we were given a choice to either go home or be admitted. We decided to be admitted so that CV Eli shouldn’t have to go thru another minute of pain. Also being here will expedite any tests they may want to do to determine the cause of the pain. We hope to have more answers as to what the cause of this is. As a precaution they did draw blood labs but as always we are hoping they will be negative. We are also hoping that whatever was the cause of the pains Eli has been having will just pass and it will turn out to be nothing.
In the meantime please daven on behalf of Elimelech Ben Basya and all cholim LREFUA SHELAYMA.
Its taking a little bit longer then we thought but slowly Eli is getting back to himself. He is still quite weak and has some minor pain and nausea from the surgery, chemo and antibiotics but as always he is making the best of it.
BH today we were told by the DR that they finally figured out the full nature of the infection and they have decided to change the IVs instead of every 4 hours around the clock like its been for nearly a week to have 1 IV 2 times a day for 10 more days.
There isn’t much on the schedule other then just working slowly to help Eli get back to full strength. Please as always keep Elimelech Ben Basya in all your tefilos.
The day didn’t at all start the way that was planned but BH it ended the way we hoped. At 6:30AM they took Eli to the pre-op area for a 7:30 surgery. At 7:40 the nurse tells me with no explanation that surgery has been cancelled. I was adamant that I was not going to leave the room or area under I either got a valid reason or they do the surgery. Thank gd I was a stubborn brat because at the end of the day it was a miscommunication and a few hours after the initial schedule we were finally given the go ahead and at 11:30 they wheeled Eli into the OR.
We got the good news at about 12:30 that the procedure went well and by 2PM they had things moving and had gotten in touch with the pharmacy to deliver the IV meds to our home. They haven’t yet determined the exact nature of the infection and therefore for the time being Eli is still on 2 separate IV antibiotics each needs to be given 3X daily for 14 more days and can’t run together. So its a lot of work but beats being in the hospital.
Once home this evening Eli was back to himself and back to eating steak. We will keep him home to recoup and rest from this hospital stay a few more days but for now we are happy he’s home and IYH headed only in the right direction.
Please as always continue having Elimelech Ben Basya and all cholim in all your tefilos.