Michael & Andrew McCaughey Fight MDS-Leukemia

STORY UPDATED DUE TO ANDREW'S DIAGNOSIS

Most of you know the story of our twins being born special need and with Diamond Blackfan Anemia. How they are the only set of fraternal twins in the world with it. DBA is a rare bone marrow failure disease. The twins bone marrow does not produce any red cells. Red cells are what carry oxygen throughout your body and without them your hemoglobin drops and you have no energy. Without transfusions they would die. The twins have been transfuison dependent their whole life. We have traveled down to DuPont every three weeks at least to get them transfused. They have been cared for all their lives down at Nemours - A. I. DuPont Hospital For Children in Wilmington, Delaware.

Thank the Lord He made our boys tough. They have enduread a lifetime of pain and suffering in their short twenty-two years on this earth. They both have endured over fifty surgeries and procedures - as they still continue and deal with ongoing challenges along the way. In June of 2019 Michael was diagnosed with MDS-Pre-Acute Myeloid Leukemia. Michael had this rear it's ugly head twelve years ago but it came out roaring in 2019. Michael was admitted to Nemours in April of 2020 to undergo chemotherapy and to go through a bone marrow transplant which he was inpatient for two and a half months. Yes, it's funny because he was supposed to be admitted in December of 2019 but the Doc's were worried about the Flu. Yes the flu and here he ends up getting admitted at the height of COVID-19. Can't make this stuff up. Due to COVID-19 we were not allowed out of the room at all. No visitors at all. Thank the Lord Michael made it through that part of his journey and is continuing his bone marrow transplant journey here at home now. His immune system is still low. He now has additional health issues due to all he has gone through but we are truly blessed that he is still with us. Not everyone makes it through.  Michael's journey will be a long one and we just take it one day at a time around here. So grateful. Could be so much worse.

Andrew’s journey begins. On August 18th, 2021 at 1:48 p.m. I received a call from the twins Hematologist down at DuPont. She called to confirm that Andrew also has now been diagnosed with MDS - Pre - Acute Myeloid Leukemia. Just like Michael. It was devastating. Having one child with cancer is bad enough but now his fraternal twin is being diagnosed with it too? I know it happens to others but we were praying it would not happen here. All we can do is pray, pray, pray. DuPont is doing all their work behind the scenes right now for Andrew. I have received information from Be The Match so I know the search for a bone marrow donor is already in the works. Andrew will have to go through a lot of additional testing to ensure his body is capable of tolerating the whole bone marrow transplant process so we await the word on when all that will begin.

Once Andrew is admitted they will place his central line. This is where all his meds and chemotherapy will go through. Also feeds, vitamins etc. once the chemo has ravaged his body and he is unable to swallow, eat or drink anything. When everything is complete and he is cleared to go they will start the extensive chemotherapy to kill off his diseased bone marrow. Barring no other complications - once the chemo is complete and his counts look good - or I mean bad! They take you to the brink of death when you go through a bone marrow transplant. They kill off your whole immune system. There is not one cell left in your body to fight for you that is why it is so scary. There are so many issues like VOD (blocked vessels of your liver), cardiac issues, mucositis (sores in the mouth and the G.I. tract), lots of nausea and vomiting, infections, lung issues and so much more that can take you out even before you receive your bone marrow transplant. It's brutal. So, we are thinking positively and once Andrews counts are where they need to be - which is zero - they will do the bone marrow transplant. Which in itself is nothing. It looks like a bag of blood. They will either hang the bag and infuse it like a transfusion or a nurse will push the red cells through one of Andrews many I.V. lines that he will have. Michael looked like he had over ten I.V. lines coming out of him. You don't realize how difficult that is to navigate when you are jumping out of bed trying to get to a commode due to the toxic chemo diarrhea while also vomiting all the while you are trying to hold all your I.V. lines, EKG leads and a pulse oximeter on your one hand. It is horrible and I have to say that Michael handled it very well God bless him.

Like I said with Michael - every bone marrow transplant is different. Patients can end up in the hospital for months to over a year. We know some who have. Lord willing Andrew is stable enough to leave at one point. We are hoping he will be released to come home and not have to stay at the Ronald McDonald House for his treatments and close monitoring. We are an hour away so we have to be very careful with him. We have no idea how Andrew's journey will go. Only the good Lord knows his path.

Andrew and Michael have always had a strong support system. Many in the area know them well. All their special teachers and aides they have been blessed with over the last twenty years of schooling and the Life Skills - PATH Program at Haverford High. All the lessons they have taught them and all the special life lessons Michael and Andrew have taught them. They are loved by so many. You have to remember that Andrew and Michael are twenty-two years old but they are only eight in brain age. We are so grateful and thankful for everyone who has been in their short, unbelievable and courageous lives. Our young men are amazing. All we can do is ask the good Lord to please help guide Andrew through his very difficult bone marrow transplant journey. It's going to be a long one just like Michael's. Jim, Jimmy and I want to thank you all for your support. We are humbly asking if you could continue to share Andrew and Michael's story with family and friends for continued donations, prayers and support. Donations will help pay for the exorbitant medical expenses, cost of living (Home and Donna down at the hospital), travel expenses, and so many medical supplies, feeds etc. once Andrew returns home as we are still doing for Michael. Also, to help alleviate some of the financial burden off of Jim. Jim has Parkinson's Disease and is suffering but he is still out there every day busting his rear end for us. We understand times are hard for everyone right now and if you are unable to donate, please we ask for as many prayers as possible for Andrew and continued prayers for Michael too as he continues his journey as Andrew’s begins. His fight - their fight - is our fight and we will beat this with the love and support from everyone. Please continue to spread the word to family and friends and we thank you from the bottom of our hearts.

Donna, Jim, Jimmy, Michael and Andrew

God grant me the Serenity

to accept the things

I cannot CHANGE;

 the Courage to CHANGE

the things I can;

and the Wisdom 

to know the DIFFERENCE;

Thy will, not mine

be done.