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A Mass of the Angels will be celebrated at St. Anthony’s Catholic Church (5340 – 4th Street S.W., Calgary, AB) on Thursday, April 24, 2025, at 11:00 a.m. Reception to follow in the Parish Hall at the Church. Graveside Service to follow at Mountain View Cemetery at 2pm.

Joseph passed away peacefully today and has gone to be with our Lord. We would like to thank everyone for their prayers and support. In the words of Jérôme Lejeune: “Deo Gratias”.

More updates will come in the following days as we decide a date for his funeral.

Joseph’s condition has worsened and his doctor’s have run out of viable treatments to help him. With this in mind we have decided it is time to change the goals of Joseph’s care to comfort care.

We would appreciate continued prayers for God’s will to be done whether it is a miracle of healing for Joseph or for him to have a peaceful death.

In the next few days, our family will be focusing on cherishing the time we have left with Joseph. He is a beautiful and strong little boy. We are comforted that so many people have had him in their hearts and prayers, and also have peace because Joseph’s soul is perfectly ready to meet God. In all the suffering Joseph has endured we believe He is close to Christ and that just as Christ rose from the dead to conquer death, so too will Joseph’s body will one day be fully restored.

Thank you again to everyone who have supported us through this time. All the support and prayers have helped us immensely.

“You want to fight against disease but love and carry on caring for the people who are here.” Venerable Jerome Lejeune

“Earth has no sorrow that heaven cannot heal.” St. Thomas Moore

Joseph heading into the cath lab for a procedure; underlying condition still unresolved but some progress made in other areas; Olivia and the kids all have influenza a and are recovering; chemo will be next week

Today Joseph is undergoing a procedure to insert a catheter into his heart so they can check his blood pressure and veins. This is one of the recommendations from the Children’s Hospital in Philadelphia. The goal is to investigate Joseph’s blood pressure and check that his pulmonary band is working. Also to see if they can help his leaking issue by working on veins.

It is estimated that the procedure may take up to 2 hours, most of that time used to gain access because Joseph has clots and limited access sites. We pray for a successful procedure and no complications.

Even though the underlying issue of the chyle and lymphatic system has not been resolved, the pd catheter procedure he received a couple weeks ago has become a site for controlled release of fluid that continues to build up in his abdomen. Joseph has been much more comfortable, needing less pain and sedation medication and having a good balance of awake and rest time. The overall swelling of his head and limbs and abdomen has decreased, he is taking some feeds through his feeding tube, and he is currently off blood pressure medications.

It has been a joy to see him look around to identify the sources of the sounds he hears. We continue to play him music, talk to him, and pray with him.

Last week, Olivia and the kids all came down with the flu. Olivia visited the ER because she came down with a fever. After doing all the blood work, we learned that overall her levels for everything are within the normal range – especially the WBCs and neutrophil levels. However, she tested positive for influenza a (h1n1) and two of the tests showed infection so she was given medication to manage those. Her chemotherapy will be moved to next week to give her body time to heal and also to ensure she is not a source of infection when she goes into the Cross Cancer Institute. We thank everyone for the continued support and prayers. We would appreciate prayers for good discernment as we continue our journey here in Edmonton.

Highlights: Joseph is stable; we are waiting for a consult from a different hospital; we are waiting for results from testing about blood clots, there are four blood clots; collapsed lung; lymphedema; kidneys may be getting sick; arrival of an authenticated relic of Venerable Jérôme Lejeune

Joseph is stable, but overall there is still a lot of uncertainty and worry from the medical team over his condition. We are waiting for either the Toronto Hospital for Sick Children or the Children’s Hospital of Philadelphia to accept a consult for baby Joseph. Joseph has lymphedema, a condition where lymph fluid is building up in the body between skin and muscle. Doctors believe this is the reason Joseph had an extremely swollen head and abdomen (chyle ascites) last week. Since Joseph has had two lymphangiograms, doctors know that he his lymph node system has differences, likely due to him having T21 (Down Syndrome). Additionally, Joseph continues to show differences in the way his body clots – despite being on anti-clotting medication, they found a new clot on the line that goes directly into the atrium in his heart. The other three clots are still there in his body (neck, arm, and thigh). We are waiting on test results on whether he may have a hereditary predisposition to blood clots.

Last weekend March 1st to Tuesday March 4th, we saw Joseph go from having some swelling to extreme swelling. Doctors were trying to give him diuretics in an effort to help him pass fluid out of his body, but nothing seemed to be working well. On Tuesday we received an authenticated relic of Venerable Jérôme Lejeune. We continue to believe that he is near to us during this challenging time of life. By Wednesday, we started to see that swelling was coming down, Joseph responded to some of the diuretics and Joseph then began to pass enough fluid that he was in net negative numbers for a couple days.

Since Joseph’s chylothorax has been settled for some time (the one remaining right chest tube has had a stable output of less than 5mL in 24 hours) the doctors have give him a challenge to take food orally. He has begun feeding a small amount of specialized formula that is designed not to activate the lymphatic system the way other types of breastmilk or formula would. He has shown an ability to take on feeds without chylothorax flaring up.

Joseph’s lungs continue to keep his bedside nurse and the respiratory therapist busy. Yesterday his chest x-ray showed that his right lung was having trouble getting air, but today it was the left lung that seemed to collapse. It seems that changes in his position shifts the fluid within him, and then impacts the lungs.

The use of diuretics are likely contributing to his kidneys beginning to show signs of getting sicker. Doctors are doing what they can to help manage and give Joseph’s kidneys a chance to regroup.

We pray for wisdom and direction in the next weeks about Joseph’s care. And we continue to pray with hope for healing of Joseph according to God’s will. Venerable Jérôme Lejeune, intercede for us.

Over the weekend, doctors were working to help Joseph lose extra fluid in hopes to manage his inflammation. But Joseph’s condition is worsening and doctors are worried. He is very swollen, both in his head and also his abdomen. It is suspected that the surgery may have stopped the fluid from pooling in the chest cavity, but it is now coming out in other places. Chylothorax is the condition, and the lymphangiogram has shown that there were differences in how Joseph’s lymphatic system works. So now, it seems he still has chylothorax, he has three clots, and ascites. Rather than making progress in the direction of healing, he has started to get worse. His lung tissue is also showing that it is becoming fluid filled. 

Today at 1:15pm there will be a meeting with 30 medical doctors to discuss different cases (Joseph’s is among them) to determine what remains that they can do. Our doctor has warned us that possibly there isn’t much left. It does sadden us greatly. 

On Sunday we learned that another relic is coming to us of Dr Lejeune. Last time the relic was a Rosary touched to handwritten letters of Dr Lejeune sent to us from the UK. Tomorrow, Mike’s mom will drive us a package from Aude Dugast (Postulator for the case)

Please keep praying that God would give our family strength, guidance, and faith during this difficult time. I thank you all so very much for all your prayers.