Ah, here I am again writing another update. At least this time it is only a month from the last time.
So it looks like the last I wrote Dad just got here and Mom was handing over the care of Jessie to him. Mom left the Monday after 4th of July and it is has been a crazy 3 weeks to say the least.
Jessie got sick again and had high potassium in her system. It was so high that the nurses had to have her taken up to the Telemetry department to try to get it under control. Potassium naturally lives in your blood but having too much can cause a lot of problems, especially with your heart. It can cause people to go into cardiac arrest. Thank goodness that the nurse (who were in the Neuro unit and they have all had Jessie under their care at one time or another) realized that she wasn't acting normal and had blood work done. So she went to Telemetry. She had just started doing the chemo pill again, Temadar. Reading online it seems that chemo can also casue the potassium problem as it destroys cells; that is how it fights against cancer. So to me, in my non-medical opinion, was sick due to the chemo.
Later that week the doctors told Dad that there was nothing else left to do for her and that we should think about her end of life plans. WHAT!!! The doctors felt that she wasn't getting better and that he mental capacity had reached its limits; to them there was nothing left for them to do. So Dad called me at work and was upset, which of course anyone would be upset. He said the doesn't want to see Jessie suffer. I understand that, and I get that. But what is going on with the hospital?!? To me she was getting better.
So the next day I asked to see Dr Morgan, Jessie's Neurosurgeon and who had been on her case since day 1. I told him that I had to hear what was going on from him. He explained the situation and said that the doctors felt there wasn't much more they could do for her. I said that right now Jessie has two problems; one is that her body is so weak and can't fight the infections and two she has a tumor. I felt that getting her off the chemo and giving her body a chance to get better would be what I wanted. Daddy said it was my decision so I asked to have her stop the chemo for a week and allow her body to get better. Dr Morgan said he would do that and we could go from there.
Now, I am not a parent but I am a sister. Jessie is my best friend, my partner in crime. I have done everything with her. I cannot let her go. I cannot give up. I know that it is selfish of me to ask for her to keep going but I know in my heart and in my soul that this was not the end. The doctors were telling me to take her home and let her pass. To me that meant to let her go home and die from a bladder infection or high potassium, things that they can fix! So that was what we were left with. My hopes were....
1) She gets better but cannot do chemo. In that case she comes home and lives the rest of her days at home surrounded by her loved ones and her favorite things.
2) She gets better and does chemo. At least that way we keep fighting.
3) She doesn't get better at all. We at least tried what we could and take her home to pass.
So, we get Jessie stabilized and finally have her moved back to the Neuro unit. The doctors want her to go to the Oncology Unit. I told them that she cannot go back there. I didn't like the treatment she go there before and that the nursing staff in the Neuro unit knows her and we (Dad and I) would be more comfortable with her being with people we trust.
She went back and gets stronger. She becomes more alert and aware of what is going on. She still has her feeding tube because doesn't eat much and is still really sleepy.
And then, the Oncologist comes by and talks to her without running it past us....
He tells Jessie that she either has to think about going to Hospice Care or continue with her chemo treatments. He tells her at 8:30am. She sits alone for 2 hours before my dad comes to visit with her during the day. She says nothing. I come after work around 5:30pm and then Dad leaves. Then she starts crying and Lacey and I don't know what is going on. Then she tells us what the doctor said. At first I am kind of shocked and had to question her since sometimes I am not sure what she says happened really happened. But she is upset.
With tears in our eyes I explain to her that this is her life; her journey to travel the path God has given her and that we can only hold her hand and walk beside her. I tell her that if she is tired and doesn't want to fight anymore then we will take her home and see where it goes from there. And I tell her how selfish I am that I don't want her to leave me and that I want her to fight. So I ask her what she wants to do. And what does she say? "I want the damn drugs! I am not ready to give up! I want to fight!!!" So I told her I will let Daddy know and we will start the chemo next week.
So last Tuesday (7/19) she got her first dose of Avastin. It is stronger chemo that is given through her IV and is a 90 minute session. She gets the chemo once every other week through the IV. I was expecting her to be worse than when taking the pill but she has done so well! She perked up and even started to crave food. We actually had the feeding tube removed! She is stronger everyday and alert and aware. She is almost back to her sassy self. Of course she has some days where she is really tired and sleepy but for the most part she is doing better.
I feel that God helped me to make the right choice. I know that Dad was having a really hard time with everything and maybe he lost hope. But I didn't and I won't. I have been with Jessie everyday since this started and I know that she still has that spark, that drive to beat this. For whatever reason I feel that if she can get through this, she will be ok by September. I know that the doctors are somewhat shocked at this turn around and they still don't have the hope we do. But you know what? I won't let the doctors crush my hope, my passion for her to get better. All I can do is pray and I do that everyday, along with lots of friends, family, communities everywhere! My friend in India prays for Jessie and me; our friends in Australia pray for us! Every voice counts and I know it. We are truly blessed and I am grateful everyday.
So that is it for now. I will share a few pictures of Jessie from the other day when we went outside. This was before the feeding tube was removed. She is just as photo-genic as always :)
