Last night Leslie texted us and said, "You know, we have prayed for a miracle, and a miracle did happen. All babies have at least 1 REALLY good eye. Prayers truly are being answered. We feel peace. And to tell you the truth, we feel like we are able to make quite educated / unemotional decisions. This is the hardest decision we have ever made, but we definitely feel we aren't making it alone."
Read that again. Because as a mother, my heart aches for the difficult decisions they are having to make.
Thomas is on both ends of the spectrum.
His Left Eye is graded an "A" (a pretty healthy eye)
His Right Eye is graded a "D" (E is the worst)
The Dr. confirmed that Thomas' Right eye has very limited sight, his central vision is already gone. With the size of his tumor, there is only a 50% chance of "saving" (keeping) the eye. The only way to attempt to save the eye is through systemic chemotherapy.
Pros / Cons of systemic chemotherapy:
Thomas is 3 months old. He weighs barely over 9 pounds. There are many harmful side effects of systemic chemotherapy on a baby his size. The risks of chemotherapy involve a 30% chance of hearing loss. Chance of kidney failure. Chance of cancer in the brain. The chemo route also involves years of EUA's (as many as 50 in the end). His eye already has no central vision, and very limited peripheral vision. Even after years of chemotherapy and treatment, there is still only a 50% chance the eye could be 'saved.' Keeping the eye is not always beneficial. And in this instance, it probably wouldn't be the most pleasing cosmetically, either. With limited vision and function, the brain eventually starts sending less signals to this sick eye. This results in the eye becoming 'lazy', or crossed.
Pros / Cons of enucleation: (removal of eye)
The other option is to enucleate - remove the Right eye.
If the sick eye is kept in place, it eventually becomes a lazy eye (crossed eye). If it is removed, the good eye becomes a "super eye". The optic nerve of the good eye is strengthened. The only negative of enucleation is the fact that we are human. And, it's hard to imagine a life with a prosthetic eye when you don't know much about it. SO many people have reached out to Leslie and Richard and given them great comfort. There are many people who have a prosthetic eye that live full, active, healthy, beautiful, very normal lives.
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If both eyes had been a grade D, then the Dr. would recommend the chemo treatment, to try to save some vision. But in that Thomas has one healthy, and one very unhealthy eye, the recommendation was to remove.
Leslie and Richard are sound decision makers. I don't question their decision at all. It is upsetting to hear, but we all also feel it is the right decision.
Thomas will have his right eye removed tomorrow (Friday) at 9am.
I have two children and reading that last sentence sounds like it would be heart-wrenching for your family. But in reading the pros and cons, it is very clearly the right decision. Just not an easy one. I cannot imagine this. Your boys and you are very lucky to have one another. You are in my thoughts and prayers. I have only heard of your family's situation today. I live near Toronto. Please reply or message me if there is any way I can help.
ReplyDeleteRichard and Leslie, you are the best parents! Really you have made a hard choice but I think it's the right choice. My husband had his eye removed at age one . he has lived happily and Cancer free for 48 years ( he's not going to be happy about the age remark but oh well) . You make the best with what you have.
ReplyDeletethank you Emily for keeping us updated. We love you guys so much! we're praying and thinking of you all day.
ReplyDeleteI agree 100% with Kamry
ReplyDeletePlease pass on our love to Leslie and Richard! This is so heartbreaking. We have been praying for these sweet babies since we heard the news on Stew's Facebook. We love you guys!
ReplyDeleteXO, Leslie, Matt, and boys
Thank you so much Emily for keeping us up to date. It is hard to hear what is happening with our great grandsons but know Richard and Leslie are strong and with faith and prayers make the right decisions. Love you all. Grandma French
ReplyDeleteMy daughter, Torey, was diagnosed with Rb at 6 months of age, although we opted for systemic chemo, it was a tough decision. She is now a beautiful 9 year old, who has been listed as cancer free for almost half her life!! We too put our trust in God, and know that He led us on an incredible journey! My family and I will be praying for sweet Mason, Thomas, and Luke.
ReplyDeleteRichard and Leslie - My heart aches for the decisions your family is having to make. Our daughter's case was similar to Thomas' - grade D in one eye and only one small tumour (treated with laser) in the other. As much as I grieved the loss of her eye, I can honestly say that I look back on that decision now and am so grateful that she did not have to undergo the rigours of chemo. Erin's prosthetic looks very natural and not one person has ever noticed that there is anything different about it. At four years old she is healthy, plays hockey, downhill skis, does gymnastics and soccer - and you would never know that she is blind in one eye. Trust in the doctors' recommendations and know that you will make the best decisions for your children. You are all in good hands.
ReplyDeleteMy heart breaks for your family-you and your sweet boys are in my thoughts and prayers. Xx-Lisa
ReplyDeleteI am.so sorry for this. I have one child diagnosed with unilateral rb and we removed her eye since her vision was mostly gone and the tumor was large. You will slowly come to deal with the after affects of the surgery. I will think of your family.
ReplyDeleteBig hugs to the whole family. The difficult decision is for the best. Wishing him a smooth surgery and recovery.
ReplyDeleteMy heart breaks for the choices this young family has to make, but I know that they have a strong faith and understanding. My prayers and love go out to Leslie and Richard and their precious children.
ReplyDeleteMy children and I (one a childhood cancer survivor himself) said extra special prayers for your precious boys tonight. God bless you and your family!
ReplyDeleteThank u for keeping us updated! Your whole family is in my family's thoughts and prayers! May God continue to give you peace! - Jay from MB
ReplyDeleteMy son is a retinoblastoma survivor for almost 12 years now. I know exactly what these parents are going through. My prayers are with the family and these precious little boys.
ReplyDeletePraying for Thomas' procedure tomorrow, and that all three boys will be healed. I lost my right eye to retinoblastoma at six weeks, but today I am in my mid-twenties, cancer-free, and living a full life. I hope for the same for your sons!
ReplyDeleteDear Leslie and Richard, I am thinking of you very much this morning as Thomas undergoes his surgery. I was treated for Rb in the 70s and while my right eye was saved as a baby, it never had sight and was eventually removed due to late effects of radiotherapy. That's a lot of intensive, invasive treatment for a baby to go through over 3 years to save an eye that was never functional. Children recover so well from the surgery and the cancer is gone. I pray Thomas' other eye will never develop tumours, but if they do, you know they will develop away from central vision and will be caught early enough to treat and save not only his eye but also his sight. May the Lord's love enfold you and fill you with peace today.
ReplyDeleteReading this in disbelief. Could you contact me at stupiddumbbreastcsncer@gmail.com
ReplyDeleteLots of strength for you this morning mama. These 3 special boys were a gift to YOU and no one else because you are the only one strong enough to get them through this difficult journey and God will make sure you have everything and everyone you need to do so :)
ReplyDeletepraying for your family...learned of your story through a friend on facebook. I have 2 girls with optic glioma, (tumor in a similar spot to retinoblastoma; one daughter has needed extensive treatment, has vision loss, etc, the other has not)...just praying that God gives you peace and strength in each moment...and hope. We know several very happy, wonderful retinoblastoma survivors, kids who are living life to the full . Always hope!
ReplyDeletehello, sorry if this posts twice, I tried earlier but do not see my comment.
ReplyDeleteRichard and Leslie, my name is Laura. I am 27 years old, have hereditary retinablastoma, and underwent bilateral inucleation. please know that your entire family is in my thoughts and prayers. please also know that losing all of one's sight is very, very scary for the entire family, but it is not the end. i promise you. even if no vision is saved, it is not the end. i can honestly tell you with my whole heart that I feel that my life has taken a much better and less scary course having never known what it is to see. i never had to lose my vision slowly but surely. I started learning how to use a cane and Braille when i was two years old and so was always on par with my classmates. and, most blissfully, i have no memories of any of my treatment. I, too, am blessed to have wonderful prosthetics, but my face does look a bit different because of the radiation treatment at such a young age. i am now a first year student in law school, and have lived a very happy, fulfilling life filled with love. i know it sounds so utterly cliche, but love is all that matters. My parents taught me that I was loved, no matter what, and so i am able to love, no matter what. and, as a result, I have many friends, engage in many activities, and enjoy life to the fullest. please let me know if I can be of any emotional or practical support to you. I cannot imagine what you are going through, based on what my parents went through with only one. but, i am telling you with the most feeling and sincerity I can possibly muster, with good, strong, solid parents, with steadfast faith, with your children knowing that they are loved unconditionally no matter what they can do or can't do, that makes more difference then anything in the whole world.
also, if you'd like, i can ask my ocularist whom he recommends in your area. he is the kindest, gentlest soul I have ever known, and I owe him an inordinate debt of gratitude for all that he has done for me. I'm sure that he could recommend someone in your area.
ReplyDeleteMy email is lux.perpetua22@gmail.com if you'd like to be in touch.
I will keep you and your family in my prayer intentions, and will pass your story along to other strong pray-ers I know as well.
God bless you all!