Help Dovi Muchnick Beat Cancer
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Dovi and Jack just came back from the hospital to get extensive blood work done. We will find out what the results are over the weekend - what his blood and organ functions look like. He tolerated the new drug OK, thank G-D. They will also let us know if they want to increase the dosage since Dovi is 6'5". This pill goes up to 10mg ($800 per pill!). Then of course, after they figure out the right dosaging - will it react in a positive or negative way with the other new drug he is already taking. These 2 drugs work more effectively when used together - we hope to get to that point. Then finally - will the drugs actually work on him? Unfortunately with experimental drugs (and some regular meds. too), something what works for one can have no effect or is dangerous for another person. We are taking it one step at a time, one day at a time. Please continue to pass this link onto your co-workers, friends, family, anyone! G-D Bless YOU ALL ,for helping to allow our Sweet Dovi fight the fight!!!
The RCCS (Rofeh Cholim Cancer Society), our Doctors , and to a VERY LARGE EXTENT , YOU , private individuals, are fighting to help us in so many ways. Chai Life Line in Lakewood has been amazing to us in helping us with many difficult issues that come along with having a family member who has cancer over the past 2 + years. We have so much appreciation for ALL your diverse, meaningful and kind efforts. Thank G-D, through everyones efforts, and kindness, Dovi will be able to start his new medication on Monday. This is just beginning of this phase of NEW treatment, with many unknowns still surrounding us. Will the medication work? Will he have a severe reaction like his last new medication? What new treatments and surgeries are on the horizon? Will we have the means to continue to support all of Dovis needs? This is a very LONG, winding road we are on with this type of cancer. Your support, and efforts to get the word out make it possible for us to do the things we need to do to save our son. Stage 4 cancer monopolizes every aspect of family life, time and income in the home where it is found. It's a disease that affects our entire family in every possible way. It's such a comfort to know that so many people care enough to help us in this way.
We are calling around to drug companies - for a 5mg pill for Dovi. We are working on it. One way or the other Dovi wil get help due to your amazing help!!! I posted some pictures below with Dovi's permission. We have gotten quotes for EACH pill of this new drug costing from $400 - $1,000 per pill, depending on where we get it! wow
I recently heard on a TV News Report one of the anchor people describing how "childhood cancer" is under control. What was he thinking? Cancer rates are up across the board. Some cancers have some good tried and true treatments, thankfully. But treatment that works on one patient may not work on the same cancer in another patient - it's crazy! Childhood cancer is not "one" type of cancer - There are endless types of cancer with thousands of children suffering and getting intense chemotherapy, radiation, surgeries, alternative treatments... - but they all do have 1 thing in common - they and their families are ALL Suffering with any combination of: Intense Pain, Fear, an Unknown Future, Anxiety, Depression, Mental Brain Haze, Tremendous Weakness, Not Being able to Sleep, The Taste of Food Changes preventing eating, Nausea, Weigh Loss, Hair loss, Other body organs being severely effected, Very Limited Social Life, Limited if non existant schooling, Being Stared at. These are just a FEW things that a cancer patient goes through moment by moment. Our gentle giant son, Dovi who is 6'5" tall goes to a top Childrens Cancer Hospital. He is definitely the tallest patient there. He is treated in a childrens hospital, because the Drs. there are experts on Neuroblastoma - a childhood cancer. Adults are "not supposed" to get childhood cancers. Dovi is a "special case" with adult onset neurblastoma. It is not genetic, the Drs. don't know how he got it. The Drs. say - there is no other patient like him - no road map to follow for treatment, no idea of remission or cure.... On top of that, treatments that can be given to little children cannot necessarily be given to an adult in neuroblastoma. Why? The radiation and other medications are usually based on the Weight of a patient - so an adult dosage would be severely toxic where it ishopefully tolerable for a small child.
Cancer life is referred by some as the "New Normal" for the changes a family has to go through to survive it daily. I call it the "New Abnormal".
Cancer can Morph, it can sometimes be treated, then come back with a vengence. It can change its DNA into a different cancer so now multiple cancers have to be delt with. With all this - we are so grateful we have our beloved Dovi and that our great Doctors are really thinking outside the box for him.
So togehter we fight - moment by moment, knowing that we may have to change our lives all over again - tomorrow - then the next day-then the next...we live as a family moment by moment. It is a daily battle on so many fronts.
I feel compelled to reach out to as many people as possible in this multiple crisis situation. Our son, Dovi, is now on his THIRD EXPERIMENTAL chemotherapy protocol plan to try and kill the Extremely Rare cancer, adult-onset Neuroblastoma, that is all over his body. As a result of Dovi's insurance company refusing to approve a targeted chemo drug called Everolimus, specifically for the AKT gene mutation of his cancer, two new cycles of treatment have recently gone by without Dovi getting all the proper chemo medication he needs to fight this disease. The insurance company will not pay the $400 per pill, totaling $3,200 every 3 weeks for him, so we have no choice but to try to pay for it out of pocket. Our doctors and advocates are fighting feverishly with the insurance company - they won't budge. We are begging the drug company to pay or partially pay for the drug now. No movement. This new medication was ordered by his doctor to work with 3 other chemo meds he is presently taking. Dovi is now on chemo drugs 24/7 with no recovery breaks, in between chemo cycles. It has been over 2 years of Ongoing, continuous chemotherapy treatments with different experimental chemo trials, but it has felt like 20 years. Our 24 year old Dovi has suffered with unbearable pain, emergency surgery, rods in his back, not having the strength or being able to normally leave his home, do college, learn the way he wants to, or lead any type of normal life for over 3 1/2 years - and worst of all, an unsure future with the stage 4, high risk, adult onset neuroblastoma. The entire family has suffered in so many ways too, both blatant and quietly. It would take a book to explain how difficult our lives have become, and how traumatized we each are, in our own way. How our very essence has changed. Our immediate family, Dovi's brothers, sisters, nephew and Jack & I, all have had to change the way we conduct our lives - TOTALLY, in ways you can't even imagine.... to try and make his life a little more tolerable. And we'd do it all again, anything for him!
Worst of all, of course, is the fact that Dovi and we know his future is uncertain, since this an "orphan cancer" and does not respond to conventional and even unconventional medical protocols. This has resulted in years of torture, but also of hope, because our beloved Dovi is still with us, fighting hard, keeping a smile on his face and praying for the best, as we all are. We've made some progress, thank G-D, but we have YEARS more of chemo, surgery and radiation therapy ahead of us. Please G-D, we want the years for our Dovi....our Brilliant, soft spoken, funny and creative young man who is the benchmark of what a true Mentsch (Good person) is. I'm sorry that I'm crying as I'm typing this, but we need help. Help with Praying for Dovi, but Financial help as well to get that medicine for him.
We are usually very quiet about our lives, we carry smiles on our faces, always have a funny joke and deep religious encouragement for others. I am sorry I need to write this to you. But Jack & I will do anything to save our son. So, we are on the begging and pleading line. We have no pride or egos - that left us many years ago, when trying to find out why Dovi was in so much pain for a year and a half BEFORE his cancer was finally, and properly diagnosed.
We personally, cannot do a fundraiser, or do something fancy on face book or twitter or other social media - we do not have those skills, time or emotional capacity to handle MORE big jobs in our lives. We are burnt out, emotional & physical wrecks. We WILL keep going on though, we have to, for everyone's sake.
The care requirements for our son have been so demanding, in so many different ways over the past several years, that it's been impossible for Jack or I to do anything that could produce a consistent income to support our family of 7.
We can't do it alone or with the few extremely generous people who have helped us. So, please, if you could help out and also pass this letter to Anyone you think may be able to help in ANY small or big way, we would greatly appreciate it - Businesses, Family Members, Friends... A Donation, Praying, Do an Event, Match funds with your Place of Work, do something on Social media, .. Anything that could help us continue our brutal fight against this satanic cancer. I don't have many of our family & friend's email addresses, so please pass this along to AS MANY people as you can. You are doing a tremendous good deed!! Thank you for being a good person and listening to the crushing pain of a mother's heart.
G-D Bless You.
Below is Dovi at his 24th Birthday getting a hug from his big brother; next is Dovi with one of his amazing Mentor-teacher/friend; 3rd is Dovi years ago - before he was diagnosed, with his favorite cat Wubbzie - our rescue maine coone cat.
The medication is not going to be covered, so Dr. Maris is attempting to get it through the hospital as part of a trial for long term use.
There is much to do yet, but we never could have come this far without everyone's help, prayers, and ongoing generous support. Each and every one of you has played a major role in saving Dovi's life. We are forever grateful.
Dovi, Robin, and Cantor Jack.....Keep fighting. Never give up. I know it's so hard to believe. But you must Hashem brought us here for a reason. I believe we must hear Kol Nidre and speak to him directly while the gates are open and the angels are listening too. You know that you are all in my prayers. I am thinking about all that you go through every day. I wish life was easier for you. Fondly, Sue G
Refuah Shleimah! I hope the nest update only brings good news! I am davening every day!
Robin, I am so happy! I am now in Israel visiting my son and at the Kotel I will again pray for his continued good health!
Imagine! Who would have thought 5 years ago that the treatment would still be going on?? Yes, I know you and Dovi knew it would!! I understand what "never give up" means. Another Kol Nidre will be coming soon for all of us. Thank you Hashem for getting us through these Cancers and the treatments with their side effects. May a day come when it is just considered a chronic disease with treatments that don't take away quality of life...where children can grow up and families don't have to worry each night. You know I am still thinking about all of you and praying that you keep your tenacity. Amen
I am so thankful for this miracle! I send love and continuing prayers.
I am so happy to hear this wonderful news. Pesach I spent time at the Kotel and prayed a long while for Dovi, I even put a note in the wall for his good health. I knew Hashem would hear me. May Hashem continue to bless him!
The best new ever!! We cannot express how thrilled we are to hear your good news! May Hashem grant Dovi a complete recovery!
Baruch Ha-Shem! So happy for you all!
So happy to hear good news about Dovi. We pray he makes a complete recovery soon and this trying time is behind you . Susan and David Levy West Hempstead
Bh Continued blessings fir a full healing from God
I am so glad to read your entry with a positive attitude. Dovi's attitude certainly keeps him going. G-d bless all of you.
My thoughts and prayers are with you.
Our prayers continue in the hope that all of the pain from this last treatment will result in steady progress on his journey. With love, The Krauss Family
I pray that this be the last step in his journey to a complete and speedy REFUAH SHELEIMAH and that the process be as painless and seemless as possible.
B"H. I am so happy to hear it. All our prayers are helping.
We're so delighted to hear that there has been some progress. We continue with healing prayers your beloved Dovi. Sending love to all.
Happy thanksgiving and blessings Robin, Jack and Dov You are amazing people and parents. an inspiration to so many. May God bless you and Dov with miraculous , continued success and a complete healing. So many care and love you.
blessings Robin, Jack, Dovi and family. my prayers are with you and contributions as I am able. may God bring Dovi a complete refuah