A Well Fought Fight!

             My mom's battle with Leukemia was such a long hard battle for both her and my dad.  It brought with it a lot of pain and tears, but also tender moments and faith building experiences.  Here is a timeline of her illness, much of which was taken from emails sent from my dad to friends and family to update them on her illness.

May 2012: My mom began seeing double and had numbness and tingling in her hands. Her blood platelets and white blood cell counts were also alarmingly irregular.  This led to many tests to determine if she had cancer.  

June 2012: By June mom was in terrible pain, and had lost almost all use of her arms, hands and legs.  My dad had been dealing with this all on his own, and was so relieved when she was admitted to the hospital June 27th. She remained there until July 5th with my dad by her side. She endured, MRI's, spinal taps, countless blood draws and still no one could tell her what was wrong.  The best they could determine was that she had a virus that had done severe damage to her nerves.  

July 5th: They flew mom to Salt Lake where they hoped doctors could find a diagnoses.  Nothing!  They finally admitted they had no idea what was wrong and could not do anything other than medicate her for the pain and sent her back to St. George for rehab.  She remained in rehab until July 31st, both her and my dad being taught how to care for her with her new disabilities. She eventually chopped her hair knowing she could not care for it anymore, and donated it to "locks of love." 

July 31st: Mom was sent home with dad to care for her.  Mom and dad are both home and adjusting to their new life.  My mom still has constant pain, and can't stand, walk, or use her arms and hands, but her eyesight has been improving. She will have "home help" come in a for a few months to assist with showers and such, but we hope with time she will get stronger and will be able to care for herself. My dad has really been a blessing to her and has cared for her since the beginning.  His work also provides great insurance and has been so good to accommodate him so he can be there for mom.  My mom shared a sweet experience with tears in her eyes.  She said that one of the nights in the hospital as my dad was brushing her hair and teeth and helping her get ready for bed, he said to her "If this is as bad as it gets we can do it."  She just thought "this is pretty bad, if he can handle this he can handle anything" she said she felt so reassured and grateful to have him by her side!

Aug. 2012: Mom was admitted again to the hospital is St. George and then flown to The Huntsman Cancer Institute after finally being diagnosed as Leukemia.

Aug. 28th: "The bottom line is she has a rare form of acute leukemia. Acute means it is a very aggressive, fast-growing type of cancer. They said it started in her bone marrow where the blood cells are made. That's what makes it leukemia; it is a cancer of the blood. Unfortunately, the cancer has now spread to her spinal fluid which goes up into the brain. It has also spread to other areas of her body, such as her adrenal glands and on her skin. The "rash" she has had on her chest and breasts for the past 6 weeks is really not a rash at all; they are leukemia cells.

The plan is to give her massive doses of chemotherapy, first, in her IV line to get to the cancer throughout her body, and second, to insert it into her spinal column, to get to the cancer that is in her fluid. All that will start today. She will have another lumbar puncture today, her 5th this summer, where they will insert the chemo. They did that last week in St. George as an experiment and it brought back feeling to her legs and a little movement in her left hand. It is the doctors feeling that she could regain most of her movement in her limbs when the leukemia is killed. The unfortunate part of this, is that it is very painful when the feeling starts coming back. Vickie can't stand to have anything touch her feet right now.

On Thursday, she will have surgery to insert a "port" into the top of her head, so they can "bathe" the chemo down through her spinal fluid, including the fluid that surrounds the brain. Of course one of the side effects of this treatment is that she will lose her hair. Another side effect is nausea, which she is already suffering from because of the leukemia in her brain spinal fluid and all the pain medications she is on.

Overall, the treatment plan is for 4 weeks."

Sept. 9th: "It has been almost 2 weeks since my last update on Vickie, when she was first diagnosed with acute Leukemia with presentation in her spinal fluid. She has finished her first round of chemotherapy through her veins, but continues to receive chemo into her spinal fluid. They operated on her head about 10 days ago and inserted a "port" under the top of her skull through which they are able to put chemo directly into her spinal fluid.

As you all probably know, chemo is pretty hard on your body. Vickie is pretty weak. Her blood levels are very low, since the chemo kills the good blood while it is killing the bad. We continue to hope that she will regain the use of her arms and hands. The doctors seem to think that once the leukemia has been killed, and is no longer attacking her nerves, her nerves will rebuild themselves and she will be able to regain her strength. We are seeing more strength in her legs, but not her arms yet.

She now has several sores in her mouths, which makes talking difficult. I tell you this for those who try to call or visit...please keep your visits short. She tires very easily.

So...what's next. They are letting her body recover for a few days and then plan to do another bone marrow biopsy. The bone marrow is where the blood is made. This test will tell them if there are still cancer cells attacking her blood. They will then probably start another round of chemotherapy for 7 days through her veins.

By the way, they did another MRI on her brain day before yesterday. It showed that several of the mass lesions in her head had gone away, but there was still one left. So the chemotherapy through her spinal fluid is working."

Sept: 17th: "It’s been such an up and down, and up again week.

Her bone marrow biopsy Tuesday looked pretty good. The cancer was going away. But then the next few days were awful. I thought we were going to lose her.

I guess the effects of the chemotherapy continue for a long time. The main problem right now is that her blood levels are critically low. White blood cells were almost all completely killed off by the chemo, thus she’s under a very high risk of infection. They won’t even let her eat any raw fruits or vegetables! They keep giving her transfusions to give her enough red blood cells to have some energy, but she wears out very fast, and after the least amount of effort.

One of the biggest problem is her platelets. Platelets, of course is what makes our blood clot. Our normal platelet levels are between 150-400 (I think that is in thousands). Anyway, hers has been below 5 all week. Her antibodies keep rejecting the donor platelets they are giving her, and they can’t find a close enough match to give her. She has been getting huge bruises all over her body, and the doctors are most afraid of internal bleeding.

Saturday morning when she woke up she had no idea where she was and was talking about the high school band. I immediately informed the nurse and within 5 minutes a whole team of doctors descended on her room afraid of bleeding on her brain. They rushed her over to the U of U hospital neurology department for detailed scanning on her brain. It showed some swelling around the port they had put in the top of her brain to administer chemo in her spinal fluid, and a little bit of bleeding, but they didn’t seem too concerned, so they sent her back to the Huntsman cancer center. By this time I was an emotional wreck. I was glad four of my children had come up for the weekend. They stayed with her for a few hours while I got away, did some laundry, took a nap, and went to the temple. It was a much needed break.

The other big problem is that she won’t eat anything. The chemo causes a lot of sores in your mouth and digestive tract, plus completely changes your taste buds. Everything tastes disgusting to her. They finally hooked up a second I.V. line into her other arm to “feed her nutrition” through her veins. It looks like a vanilla shake!

Now, the last couple of days she seems improved in energy, and no confusion in thought. Thus the up and down battle continues.

So…I have no clue what’s going to happen. Her next bone marrow is scheduled for Thursday, September 27th (ironically her birthday!) when they will be able to determine if the first round of chemo will be enough to pronounce her in remission, and send her home for awhile, or if they need to do another round. Meanwhile, they are hoping that her blood levels will build up so she could stand another round of chemo.

The thing that troubles me is that none of the function in her legs and arms have come back. When we first entered the Huntsman Cancer center a little over 3 weeks ago, the doctors felt confident that once the chemo started killing the cancer cells that were attacking her central nervous system, that she would regain the use of her limbs…but hardly any change so far."

Sept 26th: "Every day is an emotional roller coaster ride here. Generally, in the morning she is pretty alert, and I have some hope that she is going to get better. Then it goes down from there.

Some days she sleeps the entire day, and we are unable to even rouse her. Other days, like yesterday, she was alert the entire day.

However, she has now developed encephalopathy, which the neurologists call “a slowing of the brain.” On Monday the neurologists performed an EEG to confirm this. What does that mean? Basically it means she has some brain damage caused either by the leukemia in the spinal fluid circulating throughout her brain, or bleeding in the brain when her platelets were so low.

To give you some examples of what is happening; sometimes when I ask her a question she will just stare at me. I’m not sure if she understands the question and doesn't know how to reply, or just doesn't comprehend what I am saying. Or, sometimes, I will ask a question and she will slowly start to make a short reply, only to stop mid sentence  and be unable to finish. It also means she has short-term memory loss--which is good when I’m trying to feed her something she doesn't like. I will put a spoon full of something in her mouth, she will wrinkle her face and say, “disgusting” or “gross.” But she will swallow it. If I try to immediately put another spoonful in, she will reject it and refuse to eat it, but if I wait two minutes and put the spoon to her mouth, she will open and take it…and repeat the same expressions. And thus the cycle goes until I have finished feeding her. It also means that she no longer has control of her bowels. The nurses keep a “brief” on her 24/7 now.

The doctors are hopeful this condition will reverse when the leukemia is in remission…but cannot promise anything.

She is also running a fever almost every day now. Because her white blood cells are so low, they are giving her constant infusions of antibiotics and anti-fungal medications, hoping they can keep her from getting any infections until her counts go back up.

On the good side, her bone marrow is starting to come alive again. Her platelet (what makes your blood clot) levels are up, as well as her red blood cell production. As soon as the white blood count starts coming back they will do a bone marrow biopsy to see if there is any evidence of leukemia. They say that doesn’t mean the cancer is gone, it just means they can’t see it. They said they will most likely want to do another round of the chemotherapy through her veins. Meanwhile, they continue to give her injections through the port in her brain.

So…I asked the doctors today how much longer they thought she would be here. They said, “weeks.” They don’t really know.

Our six children and I have had some frank discussions about the future. I believe we are at peace at letting the Lord’s will be done. If she dies, we know that her spirit will continue to influence her children and grandchildren. I have also felt impressed that we need to let “the Lord’s timing be done” also. I don’t know why this is happening. It is probably just the natural course of how this imperfect, mortal world works. People get sick; we were never meant to live forever. Sometimes those sicknesses are just the Lord’s way of bringing his children back home.

What I’m trying to say is, I’m not sure our prayers should be for Vickie to get better. I have received some impressions from the Holy Ghost that that probably won’t happen. I’m now pleading with the Lord that she will not be in pain too much longer…and for His timing to be done."

Sept 29th: "The doctors had a long and frank discussion with Vickie and me this morning. I was fortunate to have my youngest daughter, Katie, by my side. The bottom line is…we are bringing her home for hospice care in a few days.

I arrived at the hospital (from my room at the Huntsman Cancer Apartments) about 7:00 am. Vickie was awake. She is pretty mentally alert first thing in the morning, so we were able to converse for a few minutes before the nurses came in.

She said, “I just want to scream.”

“Why?”

“I don’t want to do this anymore!”

“What do you want to do?”

“I want to go home.”

Katie arrived a little later and had a similar conversation with her mother.

The team of doctors came in about 10:15 am and spent about 45 minutes with us. Vickie slept through most of it, but towards the end she woke and repeated to the doctors that she wanted to go home. She didn’t want to prolong the inevitable.

Here is a summary of what the doctors told Katie and me:

The preliminary results of the bone marrow biopsy taken on Thursday showed that the first round of chemotherapy through her veins had done its job. They couldn't “see” any cancer cells. This is normal. However, doctors know it is not really gone and will come back. That’s why they usually do several more rounds of chemotherapy. However, Vickie is so weak from her neuropathy and the first round of chemo, that they wouldn't even recommend doing it. Plus, because of a genetic mutation in her bone marrow predisposing her to leukemia, she would need a bone marrow transplant on top of that. But the doctors said they couldn't do it anyway with her neuropathy.

A “normal” leukemia patient has about a 40% five-year survival rate. The doctors confirmed what we already knew, that Vickie’s case is far from normal…the leukemia is not just in her blood, it is also in her spinal fluid. Most doctors at this hospital have never seen that.

So, as I told you before, the doctors have also been shooting chemotherapy through a “port” in her brain. Before they put the chemo in, they withdraw a sample of spinal fluid and analyze it. Yesterday’s sample showed that the white blood cells had increased dramatically from the week before. A normal person has a 0-5 white blood cell count. Last week Vickie’s was 24. Yesterday it was 179. This is probably why Vickie has been running a pretty high fever every day this past week. And why her mental confusion continues. Her headaches are also increasing every day.

The doctors finally came straight with me that her prognosis is not good. When you combine normal leukemia with what is happening in her brain…there is little hope.

We made the decision to honor Vickie’s request to go home. There is little we could do over the weekend, so on Monday we will call and set up hospice and make all the arrangements needed. Hopefully, Monday afternoon or Tuesday morning we will get her back to Cedar City.

Katie asked the doctors the big question, “How long?” The doctors said, “With her fever, it could be days, or she could rally and last several weeks. Eventually though, the leukemia will come back with a vengeance.”

The doctors promised that they would arrange to make her as comfortable as possible until her passing.

Thank you for all your love, support, concern, emails, phone calls, etc. etc. It has made going through this experience so much easier.

With Love, Jon

P.S. I asked Katie to review this for accuracy before I sent it. She thought I ought to add that Vickie understands what “going home” means. In fact in delaying a day to send this, Vickie and I had a tender conversation about that this morning. She knows she is going to die and is not afraid to go."

Oct 1st: Insurance wouldn't cover an ambulance to bring my mom home to Cedar City from Salt Lake and my dad knew she would be miserable being strapped to a gurney for 4 hours anyway. So my little brother Daniel flew up to Salt Lake and my dad made a bed for my mom in the back of their van. He stayed back there and took care of her while my brother drove. They got home safely where hospice was there waiting with a hospital bed ready. 

Oct 2nd-11th: The days at home were not much easier than the hospital. My mom was in a lot of pain and  was not lucid all of the time. Her short term memory was not very acute so she would wake up and be very agitated that we wouldn't let her out of her hospital bed. She wasn't able to walk and it was painful for her to sit. We'd try to explain that to her and she wouldn't understand. But she also had her very tender moments. She was able to see all of her children, grandchildren, mother and siblings and talk to them all.  

Oct. 11th: Mom returned home to Heavenly Father around 9:30 in the evening with my dad by her side.  She had been pretty non responsive most of the day, until just before taking her last breath she opened her eyes and looked up to heaven.  My mom's last words: "I know I'm going to die. I'm not afraid."

Oct 17th: I was able to dress mom for her burial.  I was nervous about seeing her body void of spirit, but as soon as I forgot my fears and went to work, it became a very spiritual, tender experience.  My final act of service to my mother who did so much for me.

Oct 19-20th: We held two viewings, a funeral and finally laid my mom to rest. It was exactly how I imagine my mom would have wanted it. Friends and family laughing and reminiscing about her and the wonderful memories we have.  All the speakers did a wonderful job, and the musical numbers were beautiful. Taylor even sang with all the other grandchildren and reminded me so much of my mother as she tried to take over the microphone, singing with all her heart as her big blue eyes shone with happiness. I am sure mom was smiling!

We will miss you mom, and can't wait until we see you again!