Sunday school today was especially poignant. In the Book of Mormon, in the book of Mosiah, Chapter 24, verse 14 it reads: "And I will also ease the burdens which are placed upon your shoulders, that even you cannot feel them upon your backs..." As we discussed this in class, Sophia and Wanda and I all found ourselves with tears of gratitude flowing, for we now know them to be true.
We wanted to be with Ryan when he received the Sacrament today, so we left church early for the drive to Albany. Ryan's appetite is back after losing 10 pounds in the past 2 weeks. He ate a lot last night, and requested a steak & cheese sandwich today. Wanda got him one for lunch - it disappeared within seconds! Ryan and I went for a brief walk, and he was a bit wobbly.
Ryan asked questions about what lies ahead after completion of this 32 day course of chemo and whether he would be going to Boston for clinics visits or a hospital stay. I really don't know the specifics of what lies ahead for him, or what criteria are involved in the decisions. I have a general idea, but was resisting sharing what I think is the length and life-altering impact with Ryan and Sophia until either they asked or the doctors directed the next steps.
A friend shared with me a blog on caringbridge.org about a teen named Elmily Zeigler from Queensbury, NY, who was diagnosed with leukemia (don't know whether it's the same type as Ryan's or not) in December. She went home from Boston's Dana Farber Cancer Center this week after a successful bone marrow transplant. Her mom's entries share some of her challenges and experiences. From what I can tell, she will need to limit her exposure to infection for the next 12 months, including avoiding gatherings of people, raw foods which may harbor bacteria, avoiding eating out.
If Ryan's case follows a similar course, he may be facing 18 months living with us, and significant lifestyle restrictions during that time.
We don't know when marrow transplant will be considered, but all four of Ryan's biological siblings plan to be tested as soon as the physicians tells us what needs to be done.
Today in Relief Society, Tina VanDerwerken - Glenville's RS president - encouraged everyone who is able to consider giving blood and registering with the national bone marrow registry. There are LOTS of people out there who can benefit from our life-saving generosity at minimal inconvenience to us. And we all know that the Lord often answers prayers through other people. So why not through their blood and their marrow if necessary?
I will share the marrow donor registry info in this blog as soon as I am sure I have accurate info to share.
Two brethren from Albany 2nd Branch came in and blessed and administered the Sacrament. We are so appreciative of men who live worthy of their priesthood and are willing to take time to serve.
Wanda and I left around 3:00 so Sophia and Ryan could have some time to themselves. They napped a little between interruptions to get some "fresh frozen plasma" - FFP - plasma containing clotting factors, necessary because of a drop in Ryan's fibrinogen level. Fibrinogen is a glycoprotein which is essential to the body's clotting mechanism. I am not really sure why his levels are low - it could be from dilution (IV fluids and other blood components such as red cells have been administered), or form decreased production in the liver due to chemo, or various other causes. Not alarming, just more of the "tweaking" necessary to fine tune things.
Today was Day 11 of the chemo protocol. Vincristine is given on days 4, 11, 18 & 25 of the 32 day regimen. So every Sunday will be his vincristine days. And a few more doeses of methotrexate, and the daily steroids.
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Wikipedia on Vincristine:
Mechanism
Tubulin is a structural protein that polymerizes to microtubules. The cell cytoskeleton and mitotic spindle, among other things, are made of microtubules. Vincristine binds to tubulin dimers, inhibiting assembly of microtubule structures. Disruption of the microtubules arrests mitosis in metaphase. Therefore, the vinca alkaloids affect all rapidly dividing cell types including cancer cells, but also those of intestinal epithelium and bone marrow.
Uses
Vincristine is delivered via intravenous infusion for use in various types of chemotherapy regimens. Its main uses are in non-Hodgkin's lymphoma as part of the chemotherapy regimen CHOP, Hodgkin's lymphoma as part of MOPP, COPP, BEACOPP, or the less popular Stanford V chemotherapy regimen, in acute lymphoblastic leukemia, and in treatment for nephroblastoma (Wilms tumor, a kidney tumor most common in young children). It is also used to induce remission in ALL with Dexamethasone and L-Asparaginase. Vincristine is occasionally used as an immunosuppressant, for example, in treating thrombotic thrombocytopenic purpura (TTP) or chronic idiopathic thrombocytopenic purpura (ITP). It is used in combination with prednisone to treat childhood leukemia.Side-effects
The main side-effects of vincristine are peripheral neuropathy, hyponatremia, constipation, and hair loss.~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Ryan knows the nausea will start in the next day or two, so he's trying to eat now while he can. That explains my run to Subway as they were closing at 9 pm for another steak & cheese sandwich. He also inhaled the cookies made by Lauren Brooksby (thanks, Lauren!!!!), and the chocolate cupcake from home with Tim's famous chocolate frosting.
Around 10 pm Ryan and Sophia and I went for a walk. Still wobbly. Most likely a combination of the inherent weakness that comes from lying in bed for two weeks, plus anemia, weight loss and general fatigue and weakness from the chemo.
We found the hospital chapel and spent a little time there. Ryan picked out "Lead Kindly Light" on the piano. Some moments on this journey are burned into my heart. Precious moment / tender mercies.
Tomorrow: hopefully Ryan can still enjoy some food / taking the car to the collision center for an estimate / taking Sophia to shop for bedspread, etc, to make their home for the next 18 months (in what used to be MeiLin's room) a little more theirs.
My heartfelt gratitude for the fasting, prayers, expressions of support & love, and the cookies!!
---Barb
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