To All Our Many Angels

“I have spoken here of heavenly help, of angels dispatched to bless us in time of need. But when we speak of those who are instruments in the hand of God, we are reminded that not all angels are from the other side of the veil. Some of them we walk with and talk with—here, now, every day. Some of them reside in our own neighborhoods. Some of them gave birth to us, and in my case, one of them consented to marry me. Indeed heaven never seems closer than when we see the love of God manifested in the kindness and devotion of people so good and so pure that angelic is the only word that comes to mind.”            – Elder Jeffery R. Holland

I’m so sorry it has taken me so long to post a new update! Life at home has been wonderful and I sort of got sucked back into it. I am so grateful to be a more active mommy for Gray and do semi-normal things around the house. My blog has been severely neglected and for that, I apologize. But I am glad that I have had a couple of months to recoup a little and to spend the holidays with my little family.

I also really wanted to express my thankfulness and gratitude to everyone who has supported us and helped us through this crazy journey.  President Hinckley shared a beautiful message about gratitude. He stated that “gratitude creates the most wonderful feeling; it can resolve disputes, strengthen friendships, and make us better men and women.  Being grateful means setting down pride and softening your heart.” We have been so blessed by so many others who have taken us under their wings and shown so much compassion towards not only my little family, but to many we hold near and dear. Thank you for spreading the love and to others around you.

Lately I have had to set down my pride a lot to let others help me out once more. Back in January we had my 100 days after transplant check-up and things didn’t look too good. Though I was showing no signs of Graft vs. Host, my body’s new immune system wasn’t fighting off the tumors in my stomach like we wanted it to. My bone marrow biopsy also showed that I had 95% leukemic cells nestled in there again. Yuck.   My leukemia was still running rampant in my body.

My doctors decided that the next best step was to do a week long chemotherapy session. My body actually responded pretty well to the chemo. About two weeks later we did some follow up abdominal scans and my tumors had shrunken a little bit which made us and the doctors happy to see. Because of this improvement my doctors were able to talk with some doctors at the National Institute of Health, National Cancer Research Center in Bethesda, Maryland to take place in a study that has shown a lot promise and success. After discussing it over, we decided that it was the best plan for our family.

The Maryland treatment plan has limited enrollment, meaning they only can take certain amount of cases a year and we were happy to be able to qualify. The main focus of the study is to genetically engineer blood in order to manipulate it to destroy bad leukemic cells. The Research Center would receive T-Cells by gift from Eboni through a blood donation.  The cells then would be manipulated in a lab to recognize the CD19 marker on my leukemic B-Cells and seek to destroy them. Thus attacking my leukemia and getting me that much closer to remission.

So to start off my process of getting to Maryland, my doctors had to take me off of my immune suppressant drugs, Cyclosporine. We had to slowly taper it off and be off of the medication for about a month. So we did just that. Things were going smoothly but for some reason, our date to arrive at NIH kept getting pushed back. We are grateful for all the help from family and friends trying to find us accommodations back east. But again, the dates just would not line up.

But as I have learned these past couple of months, sometimes things don’t work out exactly as you have planned. We once again hit another bump in the road on our journey. Sickness finally hit our house. We have been completely blessed to have had so much protection from sicknesses with our little family. Gray finally picked up a little bug, but luckily it didn’t last long. But in turn, I ended up getting a fever for a few days. Luckily it wasn’t bad enough to have to be hospitalized, I was just pretty miserable. As a result, my immune system was really weakened. I started developing a bad rash all over my body and severe diarrhea. Ah man, I was miserable. My rash got so bad that it covered over 95% of my body and totally enveloped my feet where it was so painful to even walk.  

So it was off to the hospital I went, where I sit here today. I’ve been here for a week now. They have done testing and results have come back positive for Graft vs. Host Disease (GVHD). They have also found that I have GVH of the gut (GI System). It’s pretty bad, a stage 4, but we are slowly and I mean slowly nursing that back to health. It’s been slow….ooooh so slow and I am going crazy.  No food or drink is allowed in my system so my GI system can have a break and absorb the medications. So they put me back on steroids and that has made my appetite come back. I want Little Caesar’s Deep Dish pizza right now! J  Or hot chocolate,,, but in time I will have these once again.

Because I am now back on anti-rejection drugs and steroids to fight grade 4 GVH, both of which disqualified me to go on study in Maryland. I won’t be able to get off of immune suppressant drugs for up to 6 months as my doctors slowly tapper them off again. By tapering over 6 months instead of 3 we are hoping my body will not continue to reject the transplant and it will take hold without such severe GVH. Now NIH study will have to wait for now.

On a brighter note, I had some more testing done these past couple of days and I had a clear spinal tap and MRI of the brain. That has brought some comfort to our family to know that though we are going through this arduous time I still know that our Heavenly Father is watching out for us. Though we felt right about the study, maybe now is not the right time for it. As you all know, the weather has been awful out there. If I would have gotten out there and gotten GVH, who knows how long I would have been away from my family and support. I’m frustrated and confused but I also know that there is a reason for this unplanned path. I have to continue to remember to keep a grateful heart so that pieces of my life can properly heal. I must hand them, my burdens, to the Lord and allow Him to take those burdens from my heart.

Heavenly Father also promised that “I will go before your face. I will be on your right hand and on your left, … my Spirit shall be in your [heart], and mine angels round about you, to bear you up.” D&C 84:88.You, my friends are my Angels. Thank you again for your love and continual support. Your prayers and love has reached and touched our family to the core.

Love you all,

Britney, Joe, and Grayson