3/9/14

Bli ayin hora all has been going as planned and well over the last month + since the last time I sent an update. On 3/3/14 was the final day of the treatment plan which was when Eli finished the last cycle of Accutane. The side effects of it which were dried throat and chapped lips etc are finally getting better.

Eli has been in school basically full time and is BH doing very well. He is catching up on all the learning he has missed and continues to impress us, his teachers and everyone by his level of knowledge and maturity. He feels physically stronger and is able to get around on his own with little or no help.

Over the past month we have begun to reduce the TPN from its initial daily dose of 12 hours nightly down to 8 hours a night and now its down to 8 hours every other night “halevay vayter”. The goal is to get it in the near future to zero at which point beezrat hashem they will remove Elis central line.

The reason for this update is that this week we need some extra tefilos as starting Monday morning and continuing until Thursday morning each day Eli will have a scan/test/procedure. Monday morning is a CT scan, Tuesday is MIBG injection, Wednsday is MIBG scan, and Thursday is the bone marrow procedure. We look forward to beezrat hashem continued good results on all the above mentioned tests and we should have the results by the end of the week on all of them.

In the meantime as always please have Elimelech Ben Basya in mind a little extra this week as we go for these scheduled scans. Please also have Ben Zion Ben Rus and Chana Tova Bas Esther Shoshana both who are also fighting this terrible machla.

Special Announcement

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