Monday, September 9, 2013

Mountains to Climb


From Brit and Joe:

Thank you so much Kenzie for this update.  We love you so very much! This post has a lot of information about my treatment the last few weeks. It is true that I do get nervous, I’m human, but we all have our mountains to climb. "The Savor has promised angels on our left and on our right to bare us up and He always keeps his word." Please watch this inspiring video.  Love you all!

-Britney

My name is Mackenzie-
I am one of Britney's best friends. I have decided that I will try and update the blogging world about Britney's case a little bit. Britney really wants to, but she isn't always up for it. She is having double vision and sensitivity to light which gives her severe headaches and makes it difficult to write, but more on that later. I will be communicating with Joe and Brit to keep everything accurate. No worries, Britney is not going to stop posting, this is just an update.

What I know so far is that the past 2 months have been really hard. Britney and Joe act tough, because they are, but this time around is much harder than the last. When Britney and Joe found out that Brit's cancer had returned they were obviously both scared. They knew what cancer meant though, and dove right in to treatment. Her last treatment was amazing and her body reacted just how the doctors would have wanted, almost always. This time around has been a little more of a rocky road for them.

What they knew was that her leukemia (ALL) in fact had returned after a series of tests. The leukemia returned in several forms including diseased bone marrow, growths in her abdomen, and pains down her leg. She knew that the inevitable was at her doorstep… she needed to report back to the hospital.

Last time when she was admitted, the malignant cells in her blood were in the high 90's. (bad) This time it was less. Somewhere in the 70th Percentile. This, at least in my head was a very positive thing. "Great, they’ve caught it even sooner" I thought. 

Britney has a few growths in her abdomen. To keep it simple, the "growths" are fluid filled. When talking about growths, this is both a good thing and a bad thing. It is a bad thing, because operation is not an option at this point. Essentially it's a fluid filled sac with infection. Doctor's can't just cut into that. It would infect her body. Therefore, she has to treat them with chemotherapy and antibiotics. This is routinely done and an awesome option that they have, which is obviously the good part about all this.

Hard tissue growths are bad, but can be removed with surgery. I don't know much about hard tissue growths other than Britney's tumors or "growths" are not hard.

Britney quickly lost her hair and soon started feeling the effects of her treatment. She has had a lot more pain this time around. Her hips are very sore and so are her muscles. Heavy doses of chemotherapy and steroids have long lasting effects, as everyone knows.

Marrow is deep inside your bones and is what produces the blood that your body needs. Britney's marrow is infected with cancer and the chemo is meant to kill her "diseased" marrow in order for her body to receive her sister's new healthy marrow. Sometimes in certain cases, the drugs can get a little fierce and continue to kill things that aren't desirable. In Britney's case, her hip bones are in question right now. They won't really address that though until they know she is in remission and the transplant is well underway. She is in pain, I'm not sure how constant, but just from watching her I know It's not fun. It's quite the task to even walk and it's just very uncomfortable for her. She met with TOSH (The Orthopedic Specialty Hospital) this past Tuesday (9/3) and received a little more information on her condition. There is a scale that they use to judge the damage. It's a 1-3 scale.  She was told that her right hip is at a one, and her left hip is at a two. They will let her know how and when to proceed when her leukemia is in remission. But she does know that her hips will continue to deteriorate and she will eventually need to have hip replacements.

I've gone over a few times to be with her, and it it's both very sad but uplifting at the same time. It's sad because it’s not Britney. To watch your best friend suffer is very hard to watch. I can't even imagine the thoughts and fears that she and Joe must face. It's uplifting because she still has so much faith and positive energy. She knows that the Lord has a plan for her, and she is willing and ready to see the plan through. She says that she knows the Lord suffered so that she could always turn to him.

Luckily, she has been able to be home with her son. While she cannot take care of him entirely, she is present and able to still watch him grow. Either Britney’s or Joe's family have come and taken care of her while Joe is at work. It is becoming needed to have someone present always.

About 15 days ago, she learned her body was not responding to her current treatment anymore. Her tumors had not shrunk, but in fact had grown. The bad cells in her blood had gone from 76% to 96%, despite all of the chemotherapy she was receiving.

They knew they needed to act quickly. There was an option presented to them to try a study protocol that involved a new state of the art drug.  This could be the miracle drug that would possibly be what gets Britney back into remission. The study chooses applicant randomly to receive the drug.  Half receive normal chemo and the other half receives the study drug. All family and friends were asked to participate in special prayers and fasting so that Britney could receive the chemotherapy that would best help her.  The opportunity to receive the study drug meant additional options for her treatment that she otherwise wouldn’t have.

She received word shortly after that she was on the randomized list to receive the drug! This news felt like it took weeks to hear, but really it was just a few days. MIRACLE!! It is a "smart chemo," and unlike normal chemo that attacks good and bad cells alike, Inotuzumab attacks only Britney’s unique leukemia cells.  It attaches to the cells containing a certain genetic marker and injects a potent poison. Little side note: There has been no new drug developed since 1973 that is specific to leukemia, this is the first in 40 years to be developed that targets Britney's type of cancer. This drug is specific to her and it is brand new. In other words, THIS IS AWESOME!!!

Britney started the drug on 8/22 and has had no adverse reactions. It's the same type of deal. She goes into the hospital, they administer the drug. She hangs around for observation and testing and is released back home to be with her family. Every Thursday is her "hospital" day (As in all day). She is happy to do just one day instead of having to stay there always. She still has to make frequent trips to the hospital on her “off” days to get labs taken though. Family and friends have volunteered and has been kind enough to drive her back and forth. A bone marrow biopsy will be conducted on Monday (9/16) to see if the new drug is being effective or not.

For the past several days it seems like her pain has gotten much worse. Not just her hips, but in her upper body as well. She has started seeing double and is experiencing blurred vision. Her jaw will ache. Occasionally her speech will be mumbled. She has debilitating headaches. The kind where you don't open your eyes for hours kind of a headache. The kind of headache that makes you sob because you don't know what else to do. The kind of headache that I'm sure most of us have never experienced.

Thursday (9/6/2013) was her hospital day. They did testing and scans to document for the study and to check on what the cause of the headaches could be. They found a tumor around her brainstem on the MRI. She was told that it is a soft tumor and not a hard one, which is a good thing, all things considered. As far as I know, it's just one that is more like accumulated mucus. What's concerning is that an LP (lumbar puncture) 2 weeks ago was clear. My brain says "why would something new start on a new drug?" I'm sure the team that is working on her has more intelligent questions than that, and they are facing them as I type this. She again had a procedure known as a lumbar puncture (LP), or more commonly known as a spinal tap the next day, which she dreads every time. This was to obtain more information about the spinal fluid that is within her nervous system, this fluid flows up and around her brain and it is possible that the leukemia is returning there as well.

Soon we will have more information. I will update when I hear. For now Britney doesn’t want to scare everyone. She wants us to be strong and positive for her. I know her though, and she has to be scared. I'm not sure how you wouldn't be. With that said she is trying as hard as she can to be strong and brave. She knows the Lord has a plan for her. Through faith all things are possible.

I love you Brit.

Kenzie

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