A crazy 24 hours ...

As most of you know, John’s mother Nila has Leukemia. She’s had CLL for 19 years and then she was diagnosed with MDS back in January. MDS is a form of Leukemia where her bone marrow no longer produces platelets. Without platelets, her blood doesn’t clot, so she’s been receiving blood transfusions ever since January. It’s dangerous if her platelets get too low because she can experience internal bleeding. She was going into Hackensack University Medical Hospital (HUMC) twice a week, on Tuesdays and Fridays to keep her platelets at a safe level. Every Tuesday and Friday, John drives her to HUMC (about a 20-25 minute drive). This is a huge hospital and people from around here know it’s a huge pain to get in and out of there ... there’s one big parking garage and it’s always packed full of cars and people. John has to pull up outside the hospital, get out of the car and find a wheelchair, then he wheels Nila into the lobby and has her wait there while he parks the car and walks back (this can sometimes take 20 minutes). Then he takes her upstairs and gets her checked in with the nurses. She usually spends the entire day there, getting platelets and sometimes red blood cells.

About a month ago, I asked John if I could take her so that I could see where she spends so much of her time. It was good for me to see the facility, meet the nurses, as well as her doctor, Dr. Stuart Goldberg. He is one of the best in his field, constantly heading up research for the latest drugs and treatments for everything Leukemia related. He has provided excellent care for Nila and has offered several options for extending her life as long as possible. In his words, he always has “something new up his sleeve” when they aren’t seeing any progress with their current treatments. Everyone at The Cancer Center is wonderful. The nurses are kind and they treat Nila with so much love and tenderness. They love her and they love John and Jesus too. When I met them for the first time, they told me how great Nila’s sons were to her ... they even told me about the birthday celebration they had for her and how they brought in cupcakes for all the nurses! Of course I said, “I’m the one who made those cupcakes!” I was just glad that my efforts (since I stayed up until 1:30 am frosting each cupcake!) did not go unnoticed!

A couple weeks ago, Dr. Goldberg recommended that Nila start a trial study that was a new kind of chemo-therapy. He said the results had been really promising and she would be a good candidate. The therapy would basically wipe out all cells in her bone marrow (healthy cells and cancer-filled cells), creating an environment for her body to start naturally regenerating platelets. This chemo-therapy was given in a pill form, so she could take it daily at home. After taking it for about a week, she insisted on going off of it because she had severe diarrhea and she was miserable. She was then admitted to the hospital for 2 nights because she was dehydrated and had a minor infection where she needed antibiotics. The following week, Dr. Goldberg had a conference call with several doctors, all involved in the same study. He said they were seeing amazing results and that she should give it one more shot (he also said he could prescribe something to help with the uncomfortable side effects). She agreed and they said they’d start it the following week.

At that time, about a week and a half ago, she got a really bad headache. She was miserable and it was very debilitating. When John told Dr. Goldberg about her headache, he said it worried him because headaches often indicated bleeding in the brain. This had John very nervous because he’s been told that internal bleeding (in the brain and in her other vital organs) is inevitable with this disease. At some point, her body will start rejecting the platelets and her blood will no longer clot, causing internal bleeding and organ failure. When she came home from HUMC that Friday, she went straight to her room to lie down and I don’t think she ever emerged again that day. She had a rough night, in a great deal of pain from her head and her back. On Saturday, John went down to Union City to take care of some things with her house and I called Dr. Dan Wilkin to come take a look at her. She didn’t have a fever, so it didn’t seem like she had any type of infection, but Dr. Wilkin said to watch that closely because she could develop one. He gave her a shot to help with the pain, so she slept the rest of the day. By 10:00 that night, she had a fever. So on Sunday morning, John called the ambulance to take her to the hospital. This time, she went to Valley Hospital in Ridgewood ... The Cancer Center at HUMC is wonderful, but whenever Nila’s been admitted to the hospital there, it’s been a nightmare. Most of the nurses are rude and have serious attitudes. They rarely come when they’re called and John gets extremely frustrated with the care they give his mother. Whenever possible, it’s best for her to be admitted to Valley, since the nurses there are kind and caring and the service is exceptional. Nila’s primary care physicians, Dr. Lin and Dr. Kim take great care of her there, as well as Dr. Dan Wilkin.

When she got there on Sunday, they recognized she had some sort of infection, so they started pumping her full of different kinds of antibiotics. On Monday, they performed a CAT scan, as well as an MRI of her back, trying to pinpoint the source of the infection. Back in August, she had MRCA, a form of staph infection in her spine, so they were looking there to see if it may have returned. Everything came back normal and it turned out to be a UTI. She started bouncing back and they said she might be discharged by Friday or Saturday. But she was still suffering from a headache. Because of this, the doctors ordered an MRI of her head on Friday.

On Friday evening, at 6:00, Dr. Dan Wilkin called John. Just by looking at John, I could tell something was seriously wrong. Dr. Wilkin informed John that the MRI showed blood in the brain. He said that a pool of blood like this would typically need to be drained, but since her platelets were so low, that most likely wouldn’t be an option. Dr. Lin called shortly after and confirmed that things did not look good for Nila and this could be the beginning of the end. John and I were both very upset and worried about what might happen. John called his brother and they both rushed over to the hospital. I stayed home with the girls, feeling very helpless. Nicole came over to keep me company and offered to stay with the kids so I could go be with John, but John told me to wait until he knew more.

He called an hour later to say they were trying to lower her blood pressure to slow down the bleeding in her brain. By doing this, it could put her at risk for a stroke. They had also moved her to the 4th floor and put her in the ITC (Intermediate Care room – one step below the ICU). There wasn’t much they could do but wait. It was such a horrible feeling. John came home that night around midnight. He was preparing for the worst, thinking his mom could pass away over the weekend. I felt horrible, watching him suffer, thinking that he would soon be parentless. No parents with which to share our beautiful children and all the exciting moments.

The entire family slept horribly, waking up often. Maybe the girls could sense something was wrong, because they both woke up several times, waking up John and me. John woke up early and got to the hospital around 7 AM. When I spoke to him at 9, he said Dr. Wilkin told him she probably had a 75-80% chance of beating it and recovering! That was excellent news! Then later, a neuro-surgeon came in to give John his analysis of the MRI. In his opinion, the blood they saw on the MRI was old and not new! He suspected it had been there a little while (so it possibly occurred when her headaches had started a week and a half ago). He also thought the blood would be absorbed back into her body and probably wouldn’t create anymore problems. The most important part was to keep her platelet counts high to prevent it from happening again. She will now have to go to HUMC 3 times per week, every Monday, Wednesday and Friday to receive transfusions.

This was such wonderful news. It was crazy how we went from thinking she was about to die, to thinking everything is okay and she could come home next week! I’m so happy that John and I, Reagan and Avery will all get to spend more time with Nila. We recognize that her time is limited and we should be grateful for every minute we have left. Life is so precious and we need to keep things in perspective right now. Unfortunately, the road ahead may be very bumpy, with several scares like this one along the way. My husband is such a strong man who is currently enduring a lot. I wish I could take some of the burden off his shoulders.

John found an excellent poem that seems very fitting right now:

The clock of time is wound but once,

And no man has the power

To tell just when the hands will stop

At late or early hour.

Place no faith in time

Live, love, toil with the will

For the clock will soon be still

Hope you like it! Please keep Nila in your thoughts and prayers ~ thanks to everyone who's been so supportive and thoughtful during this very crazy time.