September 17, 2020
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Mom is currently day 140 status post transplant. A follow up bone marrow biopsy performed the beginning of September continues to show no sign of leukemia. We are so grateful!! She continues to have ongoing cytopenia (reduction in the number of mature blood cells). They are going to trial a new medication to help with the cytopenia. If there is no response after six weeks, they may consider a stem cell boost with steroids. She did receive a blood transfusion yesterday and that helps with the low hemoglobin and subsequent fatigue. Tuesday night was a BIG night for mom. She went and played bingo in Byron with some of her favorite people. She did not win but was happy to be out of the house and back to enjoying bingo! She has been cleared to venture out slowly as long as she wears her mask and takes extra Covid precautions. Her and dad even made the Post Bulletin Tuesday night. They had their picture taken at Grandma”s Kitchen while having lunch there last week. Grandma’s has been their go-to place after appointments. I think it is the perfect comfort food - love Grandma’s! Mom’s next appointment is Wednesday. Until then, she will continue to keep up the good work. Her appetite is improving and hopefully with this new medication trial her fatigue will also improve. Got to get her strong enough to “shake a leg” at the big wedding - 23 days!
Biopsy results are Negative and show no signs of CMML/leukemia - such Awesome news - God is good! There was a bit of abnormality in platelet cells but more than likely is a result of the lengthy virus therapy mom underwent and should improve. May consider repeating bone marrow biopsy once counts recover further. Engraftment studies improved, showing majority of the cells are now donor which is also very reassuring. Mom tells everyone she is 100% German now! Chromosome studies are still pending and will be discussed at a future appointment. Mom has a quick appointment tomorrow to check her line (maintenance) and then a longer day of appointments on Wednesday with blood work. She continues to feel fatigued but is working with physical therapy. Both her and dad feel she has made some improvement with her strengthening this past week. Her lower extremity edema has improved since initiating new medication for hypertension (blood pressure). This should help greatly with ambulation/mobility. She continues to eat and drink well and we are so grateful for all the progress she has made. Last Saturday mom was able to make it to Alyssa’s bridal shower on Chris and Tina’s patio. It was a beautiful day with family and friends. So glad she was able to attend - it was a great day! Now the count down to Wedding is on - 47 days!!!
We have surpassed 100 days! Today is day 105 post transplant. Mom continues to improve since her set back and hospitalization in June. She is still weak but eating/drinking a lot better and her mood has improved - So Thankful! On Monday they performed another bone marrow biopsy and we are awaiting the results. Tuesday she had a blood transfusion due to low hemoglobin. They feel the low hemoglobin could be stemming from the prolonged virus she has been fighting. I am happy to report she has finally tested negative for this virus 2 consecutive weeks so can finally discontinue the antiviral med she has been on for quite a while - Yay!!! The rest of her blood counts continue to gradually improve. On Monday they began daily vitamin B injections to help with some vitamin deficiencies. Next week she will only need one vitamin B injection per week instead of daily, and eventually once
monthly. No physical therapy this week due to the biopsy and low hemoglobin but is scheduled for PT on Monday - really need to work on her strength. Tomorrow she has a few appointments in the morning but after that, she should be good to go for the weekend.
We cannot thank you all enough for your generosity. The grandkids started a GoFundMe to help with Mom’s medical expenses with a goal of $3000.00 and we surpassed that goal - currently $5380.00! We are so grateful for each and everyone of you. Please continue to keep us in your prayers. They give us the strength we need on the tough days and peace and reassurance on the better days. We are all in this together!
Love and hugs ~
Happy to report mom was discharged to home today. She has made tremendous progress on her strength and stamina. So thankful for her BMT team that took such good care of her and got her the care she needed during this recent set back - lots and lots of physical and occupational therapy. She is getting stronger everyday! We know this is very hard for her as she fatigues very easily, and she misses what she used to be able to do, but we have no doubt she will continue to push herself and obtain her goals. Outpatient follow-up will continue everyday for blood draws and count monitoring. She may need a blood transfusion tomorrow, as her hemoglobin was low at discharge but not low enough for transfusion today. This will help with the fatigue also. Additional outpatient PT is also scheduled 3 to 5 days a week. Tonight she is looking forward to a little rest, pizza, and watching the Twins play the White Sox - go Twins!
Always remember you are BRAVER than you think, STRONGER than you seem and LOVED more than you know!!!💗
I have attached a GoFundMe that as been organized by the grandkids to help with medical expenses. Thanks so much to those who have already donated. We are truly blessed with wonderful friends and family!
A quick update for everyone. Sorry it took awhile - it has been some very busy days. Mom is making progression. Still has good days and bad days but heading in the right direction. Tina and I both got to take turns and sit with mom and visit while dad rested at home. We got to watch ALOT of Game Show network. Reminded me of my Grandma Vemba - she was always watching a game show! Tina probably has Cash Cab memorized. Dad has been diagnosed with vertigo. Nothing serious, thank goodness, but anyone who has been unfortunate to experience it knows it’s no fun. He felt good enough to go see mom this afternoon. There has been discussion of perhaps inpatient physical therapy rehab at St. Mary’s, short-term assisted living at Charter House or Madonna Towers, in-home health, or outpatient physical therapy at Mayo for mom. As of today, things are leaning toward in-home health or outpatient PT. Mom has been getting PT during this current stay and they are happy with how she is progressing. We just need to keep pushing along.
Again, we can’t thank everyone enough for all your thoughts and prayers. We know we can reach out to each and everyone of you and we feel blessed! We will continue this journey together - Love to all ♥️
Unfortunately mom was admitted for another hospital stay yesterday. She has been battling a darn viral infection that is very common in immunosuppressed patients for almost a month. The treatment medication has numerous side effects. She had been receiving two IV infusions daily - once in the morning and once in the evening. This meant two trips to Mayo each day for mom and dad. Because of increasing creatinine (kidney function) her treatment dose was decreased. Hoping she will be able to discontinue this treatment altogether very soon. All of this, on top of transplant recovery itself, has been very hard for mom. She feels as if she takes two steps forward just to take two steps back. She continues with daily fatigue and weakness - no appetite. Dad is exhausted too. He started feeling unwell on Wednesday. He was tested for Covid and tested negative - thank goodness! Hopefully with a little rest/TLC and fluids he will be feeling better soon. We all have to remember if we aren’t healthy, we can’t take care of mom. Covid sure does make this recovery 100% harder than it should be. Tina and I have been given clearance to visit mom while she is hospitalized as well as take turns attending appointments - still only 1 person allowed per visit/appointment. This will help dad get a break too. As only one could imagine, all this has taken a toll on mom. We need to lift her spirits and give her that boost she needs to keep pushing hard through this recovery. She has been honest and states she has lost motivation. She misses her friends and family and is struggling with this new normal. We don’t blame her at all. All of this has been very trying for all of us - so hard to see her struggle. The good news is her transplant counts all still look good. She has had a few echocardiograms due to lower extremity edema (swelling) and her heart looks great. They feel that once this viral infection clears up her kidney function will improve and she will start feeling much better. We need to keep pushing fluids and keep her kidney function heading in the right direction. They are gonna adjust a few medications to hopefully help with her mood and add an appetite stimulant. I joked with her the other day when she was on the scale. I told her that her butt was getting tiny and that she needed to get some skinny jeans!
Please continue to keep us in your thoughts and prayers - we need them and believe God will get us through all these trying times.
Good things come to those who Believe, Better things come to those who are Patient and the Best things come to those who Don’t Give up~