Up the hill, down the hill, up the hill, down the hill, using this reference explains our current extended BMT journey. Jacy’s progress as of late seems to be in an upward progression! So while we are currently running on a high, lets catch up and see where we are in regards to her possibly leaving the hospital at some point.
Here are the facts as we know them and hopefully this answers many of the questions I received during this last week.
She is eating solid food!
This is a good thing! No let me rephrase, this is an excellent stage in her recovery! The GVHD (Graf vs Host Disease) attacked her intestines and is the gravest of stages in regards to GVHD. To help better understand what that actually means let me explain. Your intestines are filled with cells and follicles. These cells and follicles take all forms of matter both solid and liquid, absorb and convert them into usable nutrients leaving any waste behind. With GVHD your white cells (the new immune system) are working great, but they still dont quite recognize their new home. So whats a scared white cell to do? Well they form up and attack anything that freaks them out! Even with immunosuppression on board, these little buggers do a number on your system. In this case her immune system attacked the cells and follicles inside her intestines, leaving her intestines looking a bit more like a solid PVC pipe. Smooth and clean. Problem? She can no longer digest food, and if any food is introduced she will automatically bloat, causing intense pain and constant diarrhea.
The Jakafi combined with steroids hopefully will allow her body time to regenerate new cells thus her new immune system will identify them as their own this being the only cure. So eating solid food, albeit noodles, chicken stock or poached chicken is a sign we may be heading in the right direction.
She still cannot see.
Her eyesight is poor, very poor. Jacy’s eyes may clear up just enough to recognize someone for a short period of time, but for the most part it remains nothing more than a fuzzy white haze. This problem is derived from a combination of issues revolving around prolonged use of steroids, aconstant need for Lasix to control excessive fluid buildup brought forth from a mirage of IV’s she receives every day keeping her alive and drug induced diabetes. This issue is temporary (after 6 weeks now it feels like permanent to her) it will resolve itself over time. We also understand she will have some form of permanent damage to her eyes. This could be vision acuity issues; issues with her tear ducts, or both. She is going a bit stir crazy not being able to watch TV, more specifically Naked and Afraid!
She has developed diabetes.
Another issue being closely monitored as I slightly mentioned above. Drug/GVHD induced diabetes. In most cases this is a temporary side effect. It comes from your body’s inability to process anything thanks to GVHD. By having your nutrition constantly fed to you via IV against the wishes of an already pissed of immune system certain things happen and this just happens to be one of those side effects. This is also temporary as the body begins to realign itself with a functioning digestive tract thus working more efficiently while producing a proper amount of insulin to help with nutrition processing.
She has massive muscle loss.
We all know and remember the Jacy who could teach two spin classes a day and sub for you in the evening if need be? Well those days are going to be over for a while; steroids are a nasty little business! Jacy has been bed ridden and in combination with all the medications including a massive continued dose of steroids, well there is nothing left. Jacy’s body has been reduced to half her size. But here is the good part. IT IS JACY!!! Anyone who knows my wife, knows there is no way in hell she is going to stay down for long! Apparently her need to walk, move or exercise in any way forced staff to put her back on a bed alarm or pin her to her chair when ever she gets out of bed to sit upright for a while. She called me yesterday and with her best controlled Cuban temper explained in great detail that she is tired of being treated like a child! In her words: If I want to walk or get out of bed to pee gosh darn it I should be able to, right? RIGHT????
Yep that’s our girl, suck it GVHD, you dont know who you are messing with!!! Later that evening she called again to let me know her and George (nursing assistant) walked the entire quad. She was feeling pretty proud of herself and she should considering last week at this time she could barely move!
She has a bleeding bladder.
Jacy’s bladder has been bleeding since the transplant. A side effect from some of the medications, it soon transitioned into an infection. This little booger is tricky, as an infection it is to be treated treated with steroids and antibiotics. Some of these medications dont mix well with others, and Jackafi itself presents a new slew of challenges. Some medications make her blood clot, others will make her bladder spasm and then throw in Lasix creating a constant need for urination and her urinary tract becomes further irritated. She could have a catheter placed but there is further risk of infection which we just can’t have right now. Another side effect becomes since she is losing blood constantly, she needs repeated transfusions of blood, or just platelets, either way, there is constant discomfort from these ongoing issues.
How is she being treated for GVHD?
There is a myriad of drugs being used to treat GVHD including what I have mentioned previously such as steroids, immunosupressors and the Jakafi. But she is also receiving Photopheresis. What is Photopheresis you ask? I found this little clip from the Cleveland clinic which I feel describes it best.
What is photopheresis?
Photopheresis or extracorporeal photoimmune therapy is a procedure that might be recommended by your doctor to prevent or to treat graft versus host disease (GvHD). This procedure offers another way to try to suppress the donor lymphocytes (type of white blood cells) that stimulate immune reactions and aid in the development of GvHD.
How long does the procedure last?
The photopheresis process lasts about 3 to 4 hours. You might require several photopheresis sessions before the desired results are achieved. Your doctor will develop an individual treatment plan for you based on your disease.
How is photopheresis done?
During photopheresis, blood is taken from one lumen of your central venous catheter and processed through a cell separation machine. This machine removes and treats your lymphocytes and then returns them and the rest of your blood through a different lumen in your central venous catheter.
When your blood first enters the machine, it is mixed with an anticoagulant medicine to prevent it from clotting. Then, the cell separation machine collects the lymphocytes from your blood and mixes them with the drug 8-methoxypsoralen or UVADEX. This is a photosensitizing agent that becomes active when it is exposed to ultraviolet light. The lymphocytes and UVADEX are next exposed to ultraviolet A light inside the machine. Lastly, the lymphocytes and the rest of your blood are re-infused to you through another lumen in your catheter.
How can this procedure help me?
By treating your lymphocytes during photopheresis, their function is altered. When the treated lymphocytes are re-infused, they will stimulate an immune response in your body to fight the development or progression of GvHD. Your doctor might use photopheresis alone or in combination with other treatments.
Everyday is filled with tests, procedures, blood draws, medications, and more. To say I think she is the strongest woman alive is an understatement. Of course there may be a bit of favoritism.
How long until she becomes an out patient?
We still dont know. Our families met with her new doctor on rotation last week. His main goal is to keep her going and hopefully we see a change. She is walking a line right now and the team’s goal is carefully assisting her by balancing all treatments and procedures without upsetting that balance. She is being weaned down a tad from the steroids in hopes her body picks up the slack and begins to strengthen. So far it is working perfectly. Our main goal during treatment remains the same. NO INFECTIONS! One small infection could upset everything and we could be back to square one quickly.
Once Jacy is able to process solid food on her own 100% we know outpatient care is not far behind. So far she has beaten all odds stacked against her! (as if any of us thought differently) And she struggles some days to stay positive but for the most part it is one day at a time and if she makes any physical progress (sitting for an extended period of time or walking) she feels like she is winning! This of course propels her into the next day!
She loves the cards, letters and prayers, they keep her smiling. (We all know that smile, if you have forgotten look no further than the top of the page, it why I picked that picture) She understands each and every one of you are thinking of her, praying for her and feels that love all the way at Stanford.
Personally I remain stunned, and so very thankful for all the help we have been receiving. The generosity of so many is a bit hard to comprehend at times. We are just like any other family who has good days and bad. This community has gone way beyond for ours, I pray daily for the ability to handle it all, to keep a positive outlook, to stay open to all forms of assistance (something I am not good at) and to not let this tornado of a life overwhelm me. I also pray for those going through the very same struggles, both personally and for those they know, for you see something like this doesn’t just affect those stricken, it affect their families, friends and co-workers as well. And with that I am saying I pray for all of you.
We have but one, life, how we choose to live, behave and respond rests solely on us as humans and within our beliefs.
I believe in having faith.
Love to you all~ Betty