June Recap

We traveled to Rochester and were able to stay at the Gift of Life House. We were in the “old” house and it was wonderful and such a blessing. Only patients and their caregivers are able to stay at the GOL houses. We were surrounded by other people that are going through some of the same things and it was encouraging to hear their stories to celebrate and commiserate with them.

Over the course of the week we attended about 40 appointments in preparation for her transplant. They tested, poked, imaged, and informed about ALL of the things. She had to do another bone marrow biopsy, got some dental work done, and continued dialysis during this week too.

At the end of the week we met with the lead on her transplant team. He was great at answering questions, calming fears, and breaking things down for us! He said, “she really is quite fit and should handle transplant well.” Transplant scheduled, heading home!

Go Time!

We arrived Wednesday evening and had office visits the next morning.

Thursday: COVID swabs, blood tests, coordinator visit, nutrition for transplant class, growth factor shot.

Growth factor shot- this medication stimulates over production of stem cells in her body. Because they are mainly produced in the bones we should expect some bone pain in the long bones and sternum while receiving the medication, along with some fatigue, nausea, etc. Claritin, oddly enough, is said to help with some of this discomfort.

Friday: A doctor check in and another growth factor shot, followed by dialysis in the evening. She had some bone pain last night, so a bit tired today, but no other issues!

Saturday: Another doctor check and growth factor shot. Her right hip and left femur are hurting more, still using Tylenol. “Do you have a cabin or something? Why are you so dark?”

Sunday: Morning blood work, doctor visit, growth factor shot. Her blood work will determine if the shots have gotten her cells to a high enough level to go to collection the next day. If not, she would have to go in Sunday evening to get a booster shot. Her CB34 needed to be at least 20 to avoid the booster, hers was 31!! Little win #1!

Monday: Bright and early collection day! She hooked up quick and got going on pulling out all of the new stem cells her body has been working hard to produce! 5 hours of collection and we headed to the daily doctor check. She had a little bit of fluid retention from the growth factor shots, but no other severe side effects. “You had a really good CB34 level!” “31! That’s really good, maybe we will collect in one day!” Patients usually take about 3-5 days to collect their goal amount of cells for transplant. Another shot and off to dialysis.

A nurse called and informed us that she collected 10.32 million cells!! Almost twice as much as her goal! Rock star!

Other than dialysis she was able to just hang out for the rest of the week, but her bone pain was still there and increasing. My dad was able to visit one evening in preparation of having to stay away during the upcoming weeks. This was a needed boost for my mom! We shopped for fabric to make head coverings and matching hair pretties for all the Kinney/Jones girls. This was a sad shopping trip, but we are prepping for the few days after transplant when she will lose her hair. We also ate out twice this week to take advantage of feeling pretty good. Once she receives the chemo she will be on lockdown and not allowed to go out and about.

The BIG week!

The plan: Monday surgery prep, Tuesday catheter placement surgery, Wednesday big dose chemo, Thursday rest day, Friday implant collected cells.

What happened…

Over the weekend she was extremely tired with decreased appetite and a big bout of nausea one night.

Monday: Visit with the coordinator and a provider. They went over the whole process again and reviewed all of the medications she would be needing to take over the next year to stay healthy post transplant.

We then met with her transplant lead. “Good collection!!” We went over a few things to prep for transplant and he requested a couple labs to check on things.

A consult with surgery about her line placement that went well. “Your neck is perfect for that procedure…long and lean.” They will be placing an additional central line to use for her chemo and transplant. They used her dialysis line for collection, but are unable to use it going forward.

While she was in dialysis her transplant lead called me to let me know that her blood tests showed some concerning levels and that he wanted her to be admitted to get them under control prior to transplant. After dialysis we got her checked in and settled. They started some medication to balance out her calcium which was dangerously high.

Tuesday: More blood tests and a CT scan. More pain and not a lot of rest. Her high calcium levels were an indication that her multiple myeloma could be getting worse. This was confirmed by the CT scan, more “spots” were visible since her last one in June. Pretty much the multiple myeloma eats the bones and releases the calcium from the bones into her blood. They continued the medication to bring her calcium levels down.

Wednesday: Visits from a few doctors to let us know that we will be postponing the transplant and that treatment is needed for her cancer. She went to dialysis and the pain in her hip was unbearable at this point. She got checked out to make sure that the pain was being caused by a “cancer spot” in her bone and was not an infected joint. She received a different pain medication that ended up causing her to get sick. Trying again!

The plan for her treatment will be similar to her treatment received January to June. She will receive a combination of three drugs, an IV chemo, oral chemo, and a steroid. The two chemo meds will be updated and are considered a level up from her previous treatment. She will also be prescribed a couple other meds to help reduce the chance of a reaction to the chemo.

Her IV chemo started at about 8:30pm and needed to run slowly for about 8 hours so that they could manage any side effects. During the night she ended up having multiple puking sessions, along with a fever and shakes. The chemo ran for about 13 hours due to having to reduce the speed even more to help with the negative side effects.

Thursday: A visit from PT was helpful, but left her exhausted. Her kidney team came to visit and check on the meds being given to control the calcium levels. Her cancer docs stopped by for some more education and mentioned that her calcium levels were in fact looking better. A long visit with OT was helpful and another doctor visit too!

Friday: More pain, more nausea. The radiation team came to do some education about possible radiation treatment. We decided to move forward with radiation for her hip. She went down for setup and after resting for a bit was then taken down to receive the radiation. Due to the lesions caused by the cancer and the weakening that can be caused by radiation, Ortho suggested possibly pinning and inserting a rod to strengthen her bone. Looking at the images her right femur and hip are severely affected, it is a “gnarly spot.” They are concerned that any weight on her right leg could cause her bones to fracture at this point. We have a consult with Ortho on Monday. More OT and PT planning and learning.

Saturday: Should be able to get discharged today! Pain management and getting her set with a walker and other assistive devices added this extra day. She learned how to do stairs and all the good things today, and we purchased a shiny new walker! We will still be in Rochester for at least another week depending on surgery and how she reacts to the new treatments. 

When diagnosed in January her “cancer number” was at 400, with a normal level of <3. June her number was at 53!! Since then it increased to 1420. Her bone marrow transplant is postponed, but still the goal to help achieve remission. Two rounds of the new treatment need to be completed, but if she responds well and gets it under control again we are set to come do the transplant right away! When we return she will be able to skip the first steps and go right to the big dose chemo and transplant.

Thank you all for the continued support!