tom's blog

It had been a while since I felt this way. This feeling of really not having control over the future. It's been weird to feel this way again. I've spent most of my life working hard to make sure that I have control. Control over our destiny. Control over where we wind up in 10 years. I'm not some sort of weird control freak (really I'm not), but with all of this, it's hard to feel like you have control over anything. I had always believed that what happened in life was mostly (99%) controlled by the effort you put into it... and now, it's out of my control. It's in the hands of Doctors and Nurses and medical things that are well beyond my expertise (though, I think I know more about the central nervous system than most 1st year medical students, and Anna probably knows her way around the billing/insurance offices of the hospital than half the people who work there). And now, after all of that, I feel like I have no control. It sucks. I need to rely on other people to make sure that WE can have the future... she'd probably shoot me if I didn't say it was also in God's control... so I'll throw that in as well, as now isn't the time for that debate. Though, to borrow a phrase, they were likely right when they said - "There are no atheists in foxholes".
 
Now that I've vented, back to what's really important.... This past Wednesday she had an appointment with her primary Oncologist, Dr. Grossman... We've been calling him "Grossy" for a while, so I'll likely just use that moving forward. He's really a great guy and we're both incredibly thankful for everything he's done. We realize he's giving Anna the best care possible, and has really gone out of his way to constantly spend time with Anna (and me), to walk us through this. So, she had her check up appointment with Grossy back on Wednesday. Everything went well, and he was pleased with the progress. Her bone marrow tests came back and they were not able to detect any Leukemia cells in her bone marrow. That's great news, though we will need to proceed with the treatment of Leukemia in her CNS and the aggressive options.
 
She had a chemo appointment again on Thursday. This was again the treatment delivered to her spine, which means a full day over at the hospital and some discomfort in her back following the procedure. My mom was able to stay over at the hospital with her, as Anna's dad and friend were staying with TJ. It's a long day, but all in all went pretty well.
 
This week she has another round of chemo on Monday, and another on Friday. We also go meet with the transplant specialist on Thursday. We'll know a lot more about transplants once we're done with that appointment. We should understand what it means in terms of finding donors, timing for the procedure, duration of hospital stay, etc. We've done some preliminary research online, but it'll be really important to talk with the actual specialist to get more information.
 
Physically, she's been feeling reasonably well. She's still a bit tired during the days and is a bit limited in what she can do, but overall feeling pretty good. Her vision is not 100% but today was the first day that she went without the eye patch, and for things that are close to her she was actually seeing good. She still sees double for things that are a little further away, but we feel like it's definitely moving in the right direction. She's still struggling a bit with losing some of her independence. She really had been back to being able to do pretty much anything, and lately, especially with the vision issues, it's been a struggle. She's been trying to prep herself for time away in the hospital for the bone marrow transplant. Last time, she didn't really have any time to think about it as it was just necessary. Now, she's in this weird stage where she's still home now, but likely once we get more info about the bone marrow transplant, we'll likely be looking at another lengthy hospital stay for that.
 
Many thanks to everyone for the emails, comments, text messages, and calls... Sorry we haven't gotten back to everyone. We definitely do appreciate everything and all of the offers to help. As we learn more about what's ahead and where we'll need help, we'll definitely keep everyone posted.
 
And.... one last thought...... J-E-T-S JETS JETS JETS!!!!!
 

I was really hoping that I'd never have to write another blog entry on this site. For those of you here for the first time, you might want to check out the FAQ to get some background on all of this, as I'm just going to jump into the latest info with this post.
 
In mid-December, Anna started to have some excessive headaches and sinus pressure. After visiting a couple different doctors, this was diagnosed to be a severe case of sinusitis which is treatable with antibiotics. On Christmas day, she started seeing double which further contributed to the headaches. After consulting with her Oncologist, he recommended we go to the ER to be evaluated by an ENT specialist and have a few tests run. We spent most of the day in the ER, and were discharged later that evening with instructions to follow up with a few different doctors.
 
After a trip to the Neurologist, a visit with her Oncologist, an MRI, a Lumbar Puncture (Spinal Tap), and a bone marrow biopsy we received a diagnosis. The testing revealed that she had a recurrence of Leukemia, with the Leukemic cells appearing in her Central Nervous System (CNS).
 
From a treatment perspective, this means a couple things:
 
Short-term: Yesterday (Thursday), she went in for her first treatment that was designed specifically to fight the Leukemia in the CNS. This is initially administered under anesthesia via a needle to the spine. This treatment of the CNS will go on for the next several weeks. We are hopeful that this will be administered on an outpatient basis. This starts with twice a week (Mondays and Thursdays), and assuming everything goes well, should decrease in frequency. She's also likely to have another port inserted to help with the administration of this chemo directly into the CNS. She currently has a port in her chest that sits directly below the skin that they use to administer several of the other chemo treatment, draw blood, etc. This new port will be installed in her head, which is a little daunting to hear, but it's a common procedure and will have long term benefits for administering future doses of chemo to her CNS. The advantage really is that once this is inserted, they'll have direct access to her CNS, so this chemo treatment can be provided during a brief appointment in the cancer center, rather than going through the much longer (and painful) process of administering this via her spine. After the first dosage, this seems to have provided some relief to the headaches, but the double vision still persists. We're hoping this will clear up in the next few days.
 
Longer-term: Given the recurrence, the maintenance chemo program that she was on is no longer going to be sufficient. We're going to need to look at more aggressive options. These options include:
1. More chemo: This will likely be higher dosages of more chemo
2. Chemo + Radiation: She did not previously go through Radiation, so this will be something new
3. Chemo + Radiation + Bone Marrow/Stem Cell Transfer: This is the big one and is the most aggressive of the bunch.
 
When we met with her Oncologist on Thursday he walked us through the options above. The exact path will be determined over the next couple of weeks. We are waiting on the results from a couple of other tests, feedback with a few other ALL specialists, and feedback on her progress with treating this in her CNS. All we're certain about at this point is that the treatment will need to be more aggressive.
 
After receiving the news, I was reminded of a speech that we heard this past year at the kickoff for Light the Night. This lady, who had been through something similar, spoke about how she always used the term Warrior (rather than Survivor) when talking about her experience and her battle with cancer. Her point of the speech was that this is an ongoing, every day battle. And, that warriors were strong and always ready for the fight. It was a really inspirational speech, one that I definitely can't do justice via this blog post... but it's a term (and speech) that has stuck with us through this battle.
 
It's been a tough couple of days emotionally and physically. Hearing the initial news on Wednesday was pretty tough, so we've had a couple of tough days. Additionally, with the treatment that she's received and the multiple procedures that were performed, she's pretty beat up physically. Throughout the last few days, her spirits have been pretty high and we're both confident that she'll pull through this.
 
So, the fight goes on.... warrior style....