I'll try and sum up the last month's events with as much information as I can recall. This is one reason why blogging is such a great way to journal... if only for my own benefit. It's only been a bit more than a month and already I have forgotten things.
SO... I was on a cruise in January and Alex was home alone and starting school. Life was getting good. When we got home Alex said she had sneezed and twisted weird and felt like it put her back out. We spent a few weeks doing some stretching and exercises and it just wasn't helping. Finally she went to a local, general physician. I won't be a complete bitch and tell you all about how bad that experience was but I will say, for any locals, DO NOT WASTE YOUR MONEY seeing Dr. Rassmussen in Murray, Utah. I am sooooo tired of doctors not treating people like what they are... and that's CUSTOMERS! Anywho... back to the story. After weeks of trying to diagnose the backache, the doctor decides to send Alex for an MRI. Even while waiting for the MRI there was a voice inside my head that said "It's not nothing." Well... after a few weeks of trying to get this regular doctor (read shitty) to read the MRI, I finally called his office, fired him and told him to get off his ass and send the MRI results to Primary Children's. This was Friday before Presidents day. That very Friday Dr. Lemons called and said that the MRI showed, what looked to be, relapsed leukemia. He wanted Alex in on Tuesday for a lumbar puncture and bone marrow biopsy. We spent the weekend in denial. Unfortunately Alex was in so much pain that we could not enjoy it. There is NO burying your head in the sand with leukemia. Once the cells start multiplying, the pain is just excruciating until the chemo starts killing the cells. It's really a shitty ass cancer.
So... now we are on the 21st of February and the first step was to diagnose just how bad the relapse was and figure out a plan. She would need to go inpatient to get the chemo rolling and also to have a surgery for another chest port. They were able to get the cell results quite quickly. She had such a mass of cells in her back that the doctor was afraid he wouldn't even be able to pull a good sample. It came back positive for CNS disease. This is how they refer to leukemia if it presents itself in the central nervous system. But... her bone marrow was good. There was no leukemia in the bone marrow. All of this was just so frustrating and confusing to me. HOW on earth was anything able to live in this child with all the chemicals that have been poured into her?
So one of the things that is hard not to struggle with is second guessing decisions we've made. From the very beginning the oncology team was very skeptical of a bone marrow transplant curing CNS disease (if you all remember she relapsed the 2nd time with CNS disease also). So, it turns out they were quite right.
Well... Alex's got another port. This is her 4th surgery for a chest port. The surgery went well, but like any surgery, it really put her down for days. During this first two weeks they really hit Alex hard with IT chemo (meaning chemo administered in her spine during a lumbar puncture.) Well.... here comes one of the challenges we are going to face during the months to come. Alex's bone marrow is VERY sensitive... very fragile... and does not really love being introduced to chemo. While her bone marrow is not affected yet with leukemia, it is only a matter of time before the leukemia will cross over into the blood supply if not treated at the same time as the spinal fluid. Well, her counts hit rock bottom in record time and a fever surfaced. BOOM! She was in the hospital for a week while they tried to figure out what was giving her the fever. She was on many different antibiotics and nothing was growing on any of the labs. One day they decided to do a CT scan to find out where the infection was.... FYI, once your body starts making white cells again, a CT scan will pinpoint where a majority of cells are located and there is your infection. Well, one trauma after the other in the O.R. kept pushing Alex back. The next morning, still no CT but the fever was gone (or seemed to be) and so they decided to send Alex home. This would end up being a nightmare.
Alex was home for two days and she started having some extreme shortness of breath. It started on Wednesday night (March 14th) and she thought that it had something to do with this long acting Morphine they had prescribed for her in the hospital. I did some googling (gotta love google) and found that Morphine Sulfate did have a rare side effect of shortness of breath and wheezing. We had an appointment early the next morning so we would find out what was going on then. During these few days that Alex was home, she decided the morphine wasn't working for her and stopped taking it without me knowing or talking to me about it. After a couple weeks of being on continuous morphine, this was not a good thing to do. We entered the clinic with Alex going into withdrawal AND not being able to breath. They immediately put Alex on oxygen and ordered a chest x-ray. She was having so many problems that they brought the mobile x-ray machine into the clinic. It didn't take long at all before a doctor came in and said they were admitting Alex and that her chest x-ray was extremely abnormal. They wanted her down to get a CT scan as soon as possible.
The CT scan came back with her lungs being completely full of something. Her lungs were almost solid towards the bottom half of her lungs. She needed to go in for a lung lavage. They basically fill her lungs with saline and then suck all the liquid back out and do a staining of the liquid to see what grows from the procedure. It proved to be completely shocking. Turned out she was positively diagnosed with Pneumocystis pneumonia (PCP). This is a very rare pneumonia that used to be a BIG killer in AIDS patients. Mostly because of their similar immune system and also the complications this type of pneumonia has in AIDS patients. Luckily there aren't the same complications with cancer patients but it is extremely bad and the treatment is a 21 day antifungal protocol... and this type of pneumonia is handled by the Infectious Disease team. She was up on the cancer floor for one night and her oxygen needs just kept getting higher and higher. She was on 6 liters of oxygen and that was as high as she could go on the floor and with your standard nasal canula. While we were enjoying all this fun, her blood pressure decided to go lower than it usually is. Her blood pressure registered 68/34. They did this 3 different times, both by machine and manually. This blood pressure brings a LOT of doctors to the room. They decided to do an extreme bolus of fluids and they had to do it by giant syringe. I had never seen this done before. And I've seen a LOT in my days at the hospital. 2 doctors stood over 3 nurses as they withdrew fluid out of the bag into giant syringes and then pushed them into Alex using her port. The I.V. pump could not give her the liquids fast enough for this low blood pressure. This took 3 nurses to get it done. Well... after they were done a chest x-ray team came back up and x-rayed her chest... only to prove that the bolus of fluids were making the lungs leaky and worse. Off to the ICU she went. Her oxygen needs were just too much and the worsening lung condition was getting serious. She couldn't get up to use the bathroom without desaturating down into the 70s. They moved her down to the ICU and put her on a High-Flow machine at 25 liters of oxygen. They also hooked her up on Dopamine to bring her blood pressure back in line. She spent the first 3 days in ICU pretty much unconscious... and 2 more days after that being incredibly sick. This is such a rare pneumonia that some nurses have been at Primary's for 17 years and have never seen a case of PCP pneumonia.
Well, in typical Alex fashion, she was a pro at kicking the pneumonia's ass. All of the doctors have just been so shocked over how well she is recovering from it. After 5 days in ICU, she was moved back up to the cancer floor and spent 5 days recovering before being discharged this last Sunday. It was one of the scariest weeks I have spent in a very long time. I figured we wouldn't make it past the pneumonia to deal with the cancer.
Well, that about brings everyone up to date. Alex is home and still recovering. This treatment is a 21 day antifungal medicine. After it completes its course next week, the doctor is going to give her a few days of chilling before she comes back in on the 9th of April for a month long stay for chemo. He's decided he's not going to take any chances with her catching anything this time around. I totally agree with him. It's just so hard to have her inpatient for so long.
So, here we are.... back at the beginning once again. Only this time the odds are really stacked against us. They don't have much success treating a CNS relapse so we will do what we can to drag everything out as long as possible in hopes that we find something that may work better than what we are trying now. We've been doing this now for almost 5 years... and even now there are different medicines than when we started, so we can all hope they'll find something new to treat this resistant leukemia.
I will try to be good at updating the blog. I've lost a lot of my mojo with all of this. And I can't seem to find my positive attitude at times, but I do know that I need to keep this journal and it is a good way to inform many people at one time.
Thanks for tuning in... and thank you for all the thoughts and prayers.
