Friday, March 30, 2018

Easter Update

The past two weeks have been busy for mom with lots of tests and meetings. Thankfully Tanya has been able to go with her, as it is a lot of information to take in and keep straight!
On Monday mom received another blood transfusion, which made her feel a bit better. Monday she also had the bone marrow biopsy done. It is a painful procedure where the doctor extracts bone marrow out of her bone in order to test it. Since it is taken from within the bone itself, only the area around the bone can be frozen. Thankfully this test is done and hopefully it won't need to be done again for a while.
On Wednesday the results from this biopsy came back and we were thankful to hear that the leukemia has not returned, which is what they were looking for. Her levels are slowly dropping to the point where it would return, but Lord willing the transplant will be done before this happens.
Mom also met with an infectious disease specialist this week. He went over the things to look out for as well as explained the vaccinations she will be receiving. She will need to start all over with her vaccinations once the transplant is finished. She will receive all the vaccinations an infant would receive.
As of now we are still on track for her to be admitted to Juravinski hospital on April 12th to begin the procedure.
This weekend mom has no scheduled appointments and we hope to spend some family time together celebrating Easter and a few birthdays! Mom is excited to have some time off and a bit of a break.
We again thank you for your continued prayers and thoughts. Have a blessed Easter!

"Praise be to the God and Father of our Lord Jesus Chris! In his great mercy he has given us new birth into a living hope through the resurrection of Jesus Chris from the dead, and into an inheritance that can never perish, spoil or fade -kept in heaven for you." 1 Peter 1:3-4

Tuesday, March 20, 2018

Mom's Upcoming Bone Marrow Transplant

With Mom's upcoming bone marrow transplant quickly approaching we thought it would be best to start this blog to keep everyone updated and informed with how things are progressing. This will hopefully clear up any questions as well as allow us to communicate any prayer requests we as a family may have.
Mom has a condition called MDS (Myelodysplastic Syndrome) which was discovered when she had leukemia (ALL) 12 years ago. MDS is a rare disorder in which the bone marrow fails to make enough healthy red blood cells, white blood cells or platelets. She may have gotten the disease from the chemotherapy she received to fight the leukemia, but we are unsure. Her blood counts (which have been checked monthly) have gotten to a point where they are too low, so now the only treatment is a bone marrow transplant.
We are incredibly thankful that her youngest brother John is a match to be her bone marrow donor. In order for him to donate his marrow he will need injections for 5 days leading up to the donation day. He will then spend 5-7 hours donating his blood. If they receive enough stem cells on the first day he will not need to repeat the process the following day. They need at least two bags worth of "blood".  
Beginning tomorrow, Louise will undergo a number of tests and has many appointments over the course of the next two weeks.
Yesterday we had a family meeting with her head doctor, nurse and a social worker. It was a long and very informative meeting, where most of our questions could be answered. Although there are still many unknowns.
On April 12th she will be admitted into Juravinski hospital here in Hamilton. She will have a Hickman catheter put in that day which will be used to administer all her medications. During the next 7 days she will undergo heavy chemotherapy. The chemo is needed in order to kill off any good and bad blood cells before the transplant will take place. The chemo will cause her to possibly be nauseous (although they have good drugs to prevent this) and she will get sores in her mouth, which makes it difficult to eat or swallow. She will also loose her hair.
On April 19th the transplant will take place. It is just like a blood transfusion and it will take a number of hours. From this day on she will be in isolation. We will be able to visit with her, but we need to be certain we are not sick. Her immune system will basically be wiped out so she is very, very likely to catch any sickness.
From this date on she will continue on many medications. She will then need to watch for Graft Versus Host Disease. Every patient has some form of the disease. She can either develop an acute form (which will show up early on) or a chronic form (which can show up months later). The systems are swelling of the skin, inflammation of the lungs etc. The symptoms can be treated but they can also very easily be life threatening. Aside from Graft Versus Host Disease many other issues can arise like organ failure and fevers.
The hope is to have mom home after a month. In order for her to be discharged she has to have no fever, and infection must be cleared up and she has to be eating. We learned that nutrition is a huge part of this treatment. When she is in the hospital as well as at home she must eat even when she may not be up to it. The hospital has a team of nutritionists, which will be working with her to make sure she is getting the calories she needs.
The coming year will be a long hard battle watching for and fighting the symptoms of the Graft Versus Host Disease. Any fever or infection will need to be reported and monitored. She is also not allowed in the sun at all since sunburn can be fatal for her.
During her stay in the hospital we are able to visit with her. We will need to be 100 percent healthy, and have absolutely no cold or flu like symptoms. A common cold or flu could be fatal for her. If you want to visit with her we ask that you please contact either Tanya or Eric to arrange a visit. Also only two visitors are allowed at a time.   
At this time we ask that you keep the following matters in your prayers:
Please pray for Mom, as this will be incredibly difficult on her. Pray that her body and mind sustains the very difficult treatment ahead.
Please pray for John as he prepares to be her donor. Please pray that he remains healthy and strong before the transplant happens.
Please pray for Dad, as this will also be very difficult for him as well. He will be at the hospital most days as well as working. Life will be hard without Mom at home with him. Also the next few months and years will be very trying.
Please pray for us her children, as we will need to be a huge support for Mom as well as Dad. We also all need to be healthy in order to visit with her.
Also please pray for her team of doctors and nurses. We are so thankful for the incredible technology that is allowing this to happen. The Lord has truly given Mom a second chance at life.

If you wish to know more information on the procedure here are some links:  http://www.hamiltonhealthsciences.ca/documents/Patient%20Education/AllogeneicBoneMarrowTransplant-th.pdf
This is an American site, but it still has some great information:
https://www.bmtinfonet.org/
I will leave you with one of my Mom's favorite Bible versus which gives us all much comfort. "Be still, and know that I am God; I will be exalted among the nations, I will be exalted in the earth. The Lord Almighty is with us; the God of Jacob is our fortress." Psalm 46: 10-11.