The Road Set Before Me

Mom, Dad, and I were all just talking about how long it feels like it's been since Mom last had an infusion! Shockingly, it’s actually only one week later than she normally would have had it, but it feels like a long time since her last one. I guess the stem cell retrieval process felt like it took a long time, but in reality it was only two days!  Mom has been recovering well from the retrieval. She was a little tired for a bit afterwards, and she had to be careful with her neck where they had inserted the retrieval catheter, but thankfully that has healed very well! The wound and bruising are actually almost completely gone. Today Mom had her immunotherapy infusion. Dad went with her to this appointment again, which was great! At this point, I think his favourite part of these appointments is getting a new book to read from the little book-sharing library in the hospital waiting room! That was a 10/10 addition to the waiting room.  The infusion went well and was (thankfully)...

Well, the stem cell retrieval is over! The whole process took two days in total because they didn’t collect as many stem cells on the first day as they had hoped.  The retrieval setup.  Starting Sunday, Mom (and Dad) went to a clinic daily for a nurse to give her shots to stimulate her body to produce more stem cells. Then yesterday was retrieval day! Mom and Dad arrived at the hospital at 8 am, and they right away prepped Mom for the catheter insertion in her neck at 9 am. By 11 am they had her completely hooked up to the retrieval machine and the process of retrieving the stem cells began. All went well with the retrieval. Mom mostly slept or rested during the whole process.  On Thursday, they were only able to collect 1.3M stem cells, so this meant that Mom would have to stay the night and they would try to collect the remaining amount needed the following day. After a little while of shuffling around from bed to bed, they finally found a bed for her to stay in for the...

Hello everyone. It's Dawn writing, but of course the girls will edit as well. In recent years even just one outing a week can feel like a lot, but getting out and about is good for me to do. Last week felt quite busy for me.  I was able to attend church on Sunday, which was lovely. My week feels much longer without worshiping the Lord with our church family.  On Monday, I went for some extensive lab work in preparation for the stem cell retrieval. Canada Health requires that a person be tested for a myriad, (38, actually!), of different infectious diseases prior to a blood retrieval. This is both for information purposes and for potential infectious disease protection for those working on the blood. 12 vials were taken for testing. One test didn't come back, so I have to get that retested. Another test showed that my ferritin is too low, and an iron infusion is scheduled for this week as well.  After the labwork on Monday, Andrew came with me to meet with our transplant c...

Last week we enjoyed a nice (but cold!) week camping, which was a relaxing break from the flow of work and appointments.  This week has us back to reality, with labs on Monday morning and an appointment with Dr. A in the afternoon. Mom felt pretty good after she and Dad talked to the doctor and were able to discuss the stem cell collection process plans. Dr. A says he is happy with Mom’s bloodwork results that had come in at the time of the appointment. He also said that although the Lambda cells are increasing, they are still within “normal range” and aren’t increasing exponentially. His plan is to collect the stem cells from Mom while she’s pretty healthy and cryo-freeze them for the future if a transplant is needed.  He reassured Mom that this procedure is fairly straightforward and not painful. Mom is nervous about the catheter that will be put into her neck for the retrieval procedure. The doctor assured her that if she needs it, he can prescribe meds to lessen her anxiet...

  Written by Dawn and Alyssa. This has been a busy start to the week for Mom, with labs and an appointment with Dr. A on Monday, followed by Immunotherapy treatment on Tuesday.  Monday’s appointment with Dr. A was fairly uneventful. He was happy with her lab results so far and with how active Mom has been. She’s been meeting her 6,000/day step goals, which is impressive for her! She always tries to hit that goal, but she wants you to know that some days she doesn’t make it, or she struggles to do so. Tuesday ended up being a busier day than expected. Before leaving for treatment, Mom received a call from Dr. A. He had forgotten to mention at Monday’s appointment that he would like to set Mom up for a stem cell collection to store the cells until she needs them. This is something that has been casually talked about happening “at some point” but that's about as far as that planning has ever gone. This was initially abandoned in 2021 due to mom’s heart damage, but it has been tal...

Written by Dawn. My treatment today went well, and we were even taken on time again. Andrew was able to go with me today, which was nice. My nurse was great, but it was more painful this time; it wasn’t the worst either.  I do find treatments more difficult when they’re not weekly.  Being out of the routine makes for more apprehension when it's time for treatment again.  I felt discouraged today, so I had to get more into the Word, prayer, and music. It is such a comfort to trust in God throughout this journey. It will be interesting to see how my body reacts this time to the only-Dara treatment.  Had my first only-Dara last month, but I had a bad cold at the same time, so it was difficult to tell. Side effects are said to be EXHAUSTION.  I hear it from patients in our support group and from reading online.  Officially, the side effects of Daratumumab are “exhaustion, diarrhea and vomiting.” Somehow, “exhaustion” sounds like the best 😉.   This pa...

  Written by Alyssa. Writing this feels like the equivalent of me saying, “But wait..there’s more!”  Yes, Mom HAS finished her chemotherapy treatments, but she will continue to have monthly Immunotherapy treatments for the next two years(24ish total monthly treatments). Today Mom and I were discussing how two years seems like such a long time, but when we put it in the perspective of treatment numbers, then saying twenty-four treatments makes it sound a little more manageable.  Mom has been fighting a bad cold over the past week, and at her appointment with Dr. A last week, he noticed right away that she seemed a bit out of breath. He ended up sending her for an X-ray, and there was no pneumonia! Praise God for giving Mom the strength needed to fight off her illness! This week was Mom’s first time receiving only immunotherapy. She’s had only chemotherapy before and had both chemotherapy and immunotherapy before, but she’s never received JUST the immunotherapy treatment on...

Written by Alyssa. Today is THE DAY! Mom had her last chemotherapy treatment this morning!  I was able to go into the appointment with her and dad, which was a pretty cool experience after hearing about it for so long. The appointment itself was uneventful. Mom was pretty excited to have one of her favourite nurses give her her last shot.  Since this was Mom’s last chemo, she was able to ring the bell! Suzanne, Angela and 11 of the grandkids had come along and met us at the bell after Mom’s appointment to celebrate. What a great moment! Mom says she finds this part awkward to ring the bell while everyone looks on, and the nurses sing at her to “hit the road Dawn (Jack).” But we know that this isn’t just for her. Yes, the bell is a symbol of completion and celebration, but it’s also a symbol of hope to those patients still in the waiting room awaiting their treatments.  And ring it she did! Didn’t even struggle to ring it. I remember when she rang it after completing her 2...

Written by Dawn. Today was my SECOND LAST chemo treatment! It went well and the clinic was so quiet again that we were on our way home by my appointment time! I had a good chat with my nurses - they were not aware of Amyloidosis, and I love to educate wherever I can! I don't think that this "rare" disease is as rare as stats show. It's just that many aren't diagnosed on time, and they pass away before that can happen. Many are going from specialist to specialist and are treated for their symptoms, but no one knows the root cause.  Amyloidosis is fatal within 6-9 months if left untreated.  It's serious. And in this, we can see God's hand of protection over me back in 2021. I initially thought I had colon cancer as bowel issues began in late 2020 and I just didn't feel well. Other issues were mainly gastro, I was out of breath and couldn't exercise as was my routine, and I felt very full all the time. I was referred to my gastroenterologist in Marc...