This morning Jen had an appointment in the clinic. The visit was a great one for three reasons.

1. They no longer detect the CMV virus in Jen so she no longer has to take a med that drives down her counts.

2. Ever since they switched Jen’s anti fungal med, she has struggled with stomach pain and nausea. So she is switching back to the previous med. Although the other med caused her occasional hallucinations,  we decided that is easier tolerated than the latter.

3. Jen got permission to go home for a trial run. And so after a long nap, we packed up the car (packing for her is more complicated than packing for an infant) and headed home.

God is good! 

Like most evenings these days, tonight Jen and I are laying on the bed watching the Cleveland Indians.  She has been out of the hospital almost a full week but it hasn’t been easy. She has been back for  two clinic appointments and one transfusion.  Calls to clinic have been frequent and most days she spends much of her time curled up in bed. Not quite life in the city her and I had dreamed of. But this is what we expected but had hoped for more.

Tomorrow morning,  she has another clinic appointment.  I plan to ask about one of the meds they recently started her on. Nearly every day since she started on this med, she has complained about body pain and stomach cramping. They had switched her to this drug because the other they believed was causing her to hallucinate from time to time. Currently,  she prefers the occasional hallucinations to this.

Since she has been spending so much time sleeping, I have had a lot of time to myself. Too much time. I have been reflecting a great deal about the last six plus months.  I still try to wrap my head around the diagnosis and how much has changed for her and the rest of us. I also have reflected on how much I’ve learned about leukemia,  about Jen, and about my faith.  I have witness so much generosity in many.  Even from people whom we have never met, including a young man who was willing to save Jen’s life with giving her life saving bone marrow. But also people who donate blood regularly.  I wonder if they know the difference they have made.

I was talking to someone who is always offering up prayers for Jen and the rest of us. She asked me what prayer I felt needed answered.  I told her my ability to release the disappointment and sadness I carry with me daily. I want my heart to feel and my eyes to see only that which I am blessed with. Instead of praying to find something in someone there isn’t, I want to focus on seeing the blessings I have found in others. Just as Jen must heal from her cancer, I must heal from the pain I have found in this journey.

So I want to finish with this. Daily so many have given me hope. So many praying. So many in their thoughts daily. So many have rallied together with us. So many have been with us since day one. I have filled a shoe box with cards but also have received so many messages of love. I want you to know, you have made a difference.

Here we are, four full days out of the hospital. It helps, we have had two maintenance visits, one on Friday in the clinic and one on Sunday with infusion to get platelets.  Tomorrow,  Jen will be seen in the clinic again, which is good because yesterday her white count and ANC was very low, thus the need for a neupengen shot. 

On Saturday afternoon,  Jen and I saw Cirque Du Soleil at the Schott.  And although Jen found the show nearly too long to sit through,  she stayed for the entire thing. We were both amazed by the shear strength of the performers.

We are hopeful yet again Jen will be given permission to go home for a short visit but with her counts fluctuating so much, I’m not sure she is ready. Her low white counts today has made her feel fatigued with a sore throat. We watched closely all day for fevers but thankfully she had known.

So now, nearly eight weeks since her transplant,  we continue to wait for her health to improve and life to be somewhat normal. 

We are now over half way to the 100th day mark. The 100th day marks when complications from the transplant decrease.  It also marks when you are not needed to be seen in outpatient as much and sometime in that period (between 50 -100), many patients can look at living at home once again. Depending on how Jennifer does, this may be possible before the end of May.

Today, we once again have left the hospital and have returned to the hotel close to The James. Jennifer was admitted on Monday because her tremors were causing her problems walking and feeding herself. They have since calmed down. They also changed her anti-fungal medicine because she was still experiencing hallucinations from time to time. And although the hallucinations seem to be gone, the new medication has been hard on her stomach.  We are monitoring that closely and we hope by the end of the weekend, she tolerates it better.

Jennifer’s counts have been on a roller-coaster ride these last couple weeks. One of her medications can cause this to happen, but to be sure that is the case and not her bone marrow not working, yesterday she had a biopsy.  We should hear some pliminary results of that biopsy tomorrow or early next week. In the mean time, she has received a couple nupengen shots to keep her white count up and will probably get some blood products tomorrow at the clinic.

We are going to inquire tomorrow, about a weekend retreat home. We hope she is safe enough to go home for a day or two. We don’t think it will happen but we are hoping. 

Since March 21 (the day of Jen’s admission), she has lost 35 pounds.  And over the course of the last six months,  65 pounds. And although, she loves she has lost weight, she has lost a lot of muscle and strength also. She tires quickly and sleeps a great deal. As each day passes, this will improve, along with her appetite. 

And as hard as these last six months have been, we were reminded over the last week, how blessed we are to have Jen here with us today. My dear friend’s son was in a bad motorcycle accident last week and is doing poorly. And also Randy’s first cousin, lost her husband at the young age of 44 on Mother’s Day.  Both incidents have us deeply sadden but yet once again has us seeing how precious life is. We take nothing for granted, and try to make each day count. We hope our journey has taught not only us so very much, but also has taught those who have been following along a great deal too. Because of Jen (#BecauseOfJen), we have come so far. 

Sometimes you make the best of the situation and only care you are together on important days like today. The last few years, on Mother’s Day the kids come over, we grill and we play corn hole. It’s a perfect way, in my opinion to spend the day. I no longer want the go out to dinner Mother’s Days, as you spend too much time waiting to get a seat and fighting crowds. It’s really not worth it. So I simplied it and it’s exactly what I want.

But this year, corn hole and grilling weren’t possible. Such simple things, that I in prior years maybe took for granted.  I didn’t know how much of a blessing those two things are. In 1992, I spent mother’s day in the hospital in premature labor with Matt. And Randy had brought the girls to the hospital to see me. Over the last 25 years, I’ve forgotten how seeing them was the only gift I needed. And although grilling and a game of corn hole is nice, being together is really all that matters.

This mothers day, I’m blessed to have all my children by my side. I’m blessed my children are close to each other. I’m blessed Jennifer is not in the hospital.  And even if we had store bought bbq pork sandwiches instead of chicken on the grill and I didn’t get to get smoked in a corn hole game, I am perfectly satisfied with the blessings I did receive. 

To all you mother’s out there. …my wish for you is to spend all your mother’s days with your children. And to those mothers who have lost one of their previous babies, my heart breaks for you. May God wrap you in His arms and help you to get through the hardest days. 

Although a couple times this week, I was feeling like life would never get back to normal, this week has proved to be a good one.  Early in the week, Jennifer was having problems with nose bleeds. This caused her to stay an additional day at the hospital.  But thankfully on Wednesday, May 10, she finally was able to leave.  If you subtract the two days she was able to leave but returned in less than 24 hours, her stay was one day shy of seven weeks.  Through that, she had radiation, chemotherapy, a bone marrow transplant, pneumonia, blood clot in the lung,  and a sodium drop that caused her to become delirious.  It felt like we were never ever going to get ahead of the game.  But we did.

We learned this week, that Jennifer is 100% donor cells now.  This means as her bone marrow grows stronger, her chances of the leukemia returning diminish. And although it appears Jennifer has a little Graft Verses Host Disease developing, they tell us a little means the body sees the new marrow and that is a good thing.  Jennifer’s GVHD is in the form of a rash on the wrist and arms.  Currently they are treating with a steroid creme but if it gets worse, they will start a oral steroid.

So if leaving the hospital and learning she was 100% donor cells wasn’t enough to make us smile, today we learned another goal  is right around the corner. When we were at the clinic, her Nurse Practitioner Jon told us that we are most likely going to be able to return Homestead North (Randy has started calling  our home here, Homestead South) by the end of this month. Yes most likely before June starts. I have always said of all the seasons of the year, there is one season that is my favorite and I am not going to miss it!  I am not going to miss……wait for it….STRAWBERRY SEASON!

Jennifer’s counts today had improved so there was no need for transfusions.  She has had tremors (which comes from the meds for the GVHD) most of the day, but she did manage to walk the long hallway here.

I also this week was able to do something I haven’t been able to do since Jennifer has gotten sick. Yesterday, I attended and photographed my 27th birth.  Happy to say mommy and baby, Kinsley Ann, are doing well.

Our journey has a long way to go, but at this six month mark, as of yesterday, it feels this journey is going to slow down and become more like a life we use to know.  Many lessons have taken place through out the last six months that we will take with us forever.  But the biggest things we have learned, is that our daughter, sister, granddaughter, and friend, Jennifer is strong physically and spiritually.  And we are so blessed to have her with us today. Cancer has not won.  And will not ever win.