The Good, The Bad and the Ugly

The Good

We arrived to clinic today thinking it would be an uneventful day and surprise, surprise-GREAT numbers. Now mind you-his numbers arent those of a "typical" child but I think by now you have figured out that these descriptors I use are "loose" and fit G. In fact we thought for sure given his INCREASED irritability this weekend he would need a transfusion today. But numbers were so good that we were given the ok to move ahead to next phase-Interim Maintenance. His ANC when we left the hospital last Wednesday was 200. We were able to get discharged once it moved beyond 100. Today it is 6, 410. WBC last week 200, today 10, 190. Hgb last week 7.7, today 8.7. I am done trying to guess around the numbers game. It is a waste of my time. No one thought his numbers would be like that today. Proof that his body is working at this. We are fooling that bone marrow!

No more delays like last week's "infection". We are a go!

By the way-this week marks WEEK 14 of treatment. It is going by pretty fast and yet so often I feel like our lives are moving in slow motion.

The Bad

No we return to inconveniences and nuisances. There was a miscommunication issue when this phase was described to us weeks ago. We were handed the time table depicting the "conventional" method of handling this phase of treatment. Drugs we were familiar with and a phase of 56 days. And yet it was not until this morning that the conversation related to the more preferred/recommended method was discussed with me via Dr. Kwon. It was quite the "frozen" kinda moment.

Weeks ago I think I mentioned we had good news and bad news to share. That news came from Dr. Goodell. I cant even remember if I shared it yet or not. If so, here goes again bc it's on my mind alot this evening. Goodell explained that typically with an older child we would administer radiation during Interim Maintenance. Now, we were under the impression that if the blasts had rested in his testes then we would be candidates for radiation. So, you can imagine how that word RADIATION scared us to even hear. We hadn't even heard that word muttered since Aug 2 when we asked about it as a treatment option. We were told no. But considering the next phase in treatment and as intense as it should be and his high risk characteristics with the ridiculous white blood count he had the day of diagnosis they had concerns. But after Goodell n Kwon discussed the pros and cons they determined that although radiation would better rid of the leukemia and its chances of returning it was NOT the option for G. He is too young. They did not want to take their chances. It was too risky for him. At this age (the big 2!) there is so much that is still developing inside him. Particularly his brain cells. They have found that radiation in a child this young can drop IQs up to 20 points. They can suffer from organ damage and other complications (not that we aren't at risk for that stuff from the chemo anyway).And often children this young suffer from developmental delays resulting in special education services and other therapies to assist their educational performance. During this conversation with Goodell Charito and I looked at each other and feared those possibilities. Yes, I'm a special education teacher but never does any parent want their child to be "imperfect".We were already fearful of the challenges chemo presented to him and radiation only increased those scars. Without saying a word to each other I knew we were thinking the same thoughts. We appreciated how they thought all this through. They considered his future, our future as parents. That was a relief.

But with that relieving thought came dread. Goodell mentioned that without the radiation there is a 15% chance the leukemia will return-and with a vengeance. It just does-worst than when it originally entered our lives. And on top of that-even if it (leukemic blasts) were never present in his spinal fluid that is typically where it is found when it does return. For the record, blasts have not been found in his spinal fluid to date (thus not impacting his central nervous system and brain function). This is what research has discovered over time. Now every cancer patient has the chance of it returning at some point. It is the daily fear. They give you a target year depending on the type of cancer and from what I have witnessed from friends and family you pray until that "safe year" hits and hope that you are still "safe" each year after that. So, we are left to pray that we are not that 15%. That it never returns after our current years of treatment. That the decision to avoid radiation pays off. In the end of that conversation, Charito and I were comfortable with that decision entirely. The alternative plan-an increase in Methatrexate dosages, the chemo drug administered into his spine. That was our plan.

So as much as I recall that conversation it was this morning's conversation that was not had by us previously. Dr. Kwon walked in with another form laying out the details of this new phase. It was titled Interim Maintenance but was not the one I had in my possession. He began to explain that considering we are not doing radiation he recommends another route for Interim Maintenance. The "high dose" method. This includes high doses of Methatrexate in both his port and spine. Along with other chemo drugs of course. The doses of Methatrexate are rather intense and therefore a drug called Leucovorin (new to us) is necessary (http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000652). He would also be receiving Vincristine and Mercaptopurine ("more crap to pour in", you know that drug that is a pain in the butt to give bc he cant have dairy an hour before or after-It's baaaaack!). It is our best shot at protecting the central nervous system and spinal fluid,especially knowing how "fragile" G's numbers were when we entered this cancer world. He said most patients do well, as intense as it is, as long as they eat and remain hydrated throughout. It sounded like a no-brainer but I wanted to discuss it with Charito. Then the freeze came...the first dose of this treatment meant a 3-4 day hospital stay. And every two weeks thereafter. Whenever we were ready they would get a bed for us. Bed for us? That's code for being admitted, a hospital stay. I questioned what he meant and he further explained that the intense doses of Methatrexate were administered thru his port over a 24 hour period. Then G was to be flushed with fluids for days after to ensure his kidneys and bladder were excreting the toxins properly and we were given the Leucovorin as needed to counteract the effects of the Methatrexate. That meant I was to decide if we started today or next Monday. I had no idea that there was a possibility I would not be home for 4 days when I left this morning!

I called Charito right away. Deep down we knew it was good news to be able to move onto the next phase after last week's delay. We knew this was a lucky moment. I had overheard some stories of other kids in clinic near G's age and older that were due to start this phase near the same time as us and they were stricken with tons of "hiccups" and delays over the past few weeks, those much more troublesome than ours. It was a no brainer but as Charito and I think alike we drifted to the calendar and thought of the holidays. If we started today that would mean the following bi-weekly hospital stays would fall days before Thanksgiving and Christmas (of course, as always those tentative dates are dependent on his numbers and the progress of the phase -no "hiccups". Leaving us to wonder that even if we returned home the day before Thanx and Xmas-what condition would G be in? I asked Nurse Jennie for her honest opinion. Should we wait til next Monday? 1. For preparation sake 2. For the timing of the holidays. Her quiet pause immediately following my question made it very clear. Start today. She said not to worry about the holidays. Doctors are lenient when it comes to holidays. Take advantage of the good numbers today. It is a good start to a new phase-it's like having advantage points!

The Ugly

That was our weekend. The first SUPER crabby weekend for us all in 14 weeks. It really was unbearable. For the first time I could not tolerate G's whining and impatience. I really had to walk away from it before I yelled at him in mean way. It was the first time I couldn't reason with the "it's not his fault he feels this way" excuse. I blamed it all on terrible twos, got upset and shut down. The impatience he displayed was out of control. I actually started brainstorming ideas from my Spec Ed mental file to help him get thru this. Some type of visual cue is needed to remind him he has to wait. Wait for milk while I feed Caden rather than screaming the whole time. Wait for this or that rather than throwing himself on the hardwood floor and injuring himself. I hate what these drugs do to him. Our home dynamic.

Everyone of us felt like we hit a wall. Everyone was irritable, short, and tired. It was like we couldn't recover from the blahs of October and we were finally seeing it in our kids. I had a date night planned w Triston that I had to cancel ( luckily he didnt know about it)
bc I just couldn't function. I didn't feel well and knew I wouldn't enjoy it like I had been wanting to all these weeks. I was going to force it on two crabby people. Not fair to him or I. So it became family movie nites all weekend. Early bedtimes, too. It was the first time in a while Charito felt the need to go for a ride to clear his head of all the whining (all 3 kids-even Caden ! His schedule was all out of sync while I was away last week. I spent all nite Wed and day Thursday getting him back on track. By Thursday nite he was sleeping thru the nite again! Mommy fixed it. Then stupid time change messed him up again. And now I am away again and his schedule was off once again last nite. I'll have to fix that when I return later this week). I felt the need to escape into our bedroom and fold mountains of clothes just to get away from the noise. It was one of those weekends.

And here Charito and I were looking forward to a low key weekend to wipe the weekend away. Instead another stay at hospital. It was the unexpected, unknown, surprise aspect of it all that bogged us down yesterday. No time to prep. Arrange babysitters. Mamac and Titamel are staying overnite, taking shifts, etc with the help of Papac and his drop off and pickup service. But the last minute gave no time for anything. It is going to be a long couple days for all of us. Mamac and Titamel are working everyday this week (nights). So, they sit at our house then have to go to work. Drop this one off at this time, get that person there at that time. Charito taking one or the other home at 10/11 at night she can rest up. Not to mention my lack of prep for all the things I like to micro-manage.

But here's the wierd thing-on top of my crabby mood all weekend I couldn't shake this gut feeling. It wasn't a good feeling-motherly instict kinda thing. Like something was settling well. I had some downtime Sunday and prepped all of T's snacks for school thru Friday. I made his lunch for Tuesday and Wednesday (days I didnt purchase a hot lunch). He had no school Monday for Veteran's day. I felt this urge, as annoying as it was to walk up 2 flights of stairs mulitple times, to put away all the clean clothes, sheets and towels that had built up over the past 3 weeks. It was like I was nesting! I still had the gut feeling as I walked into clinic yesterday. This stay and the protocol of this phase explains it all.

The UGLY truth is how hard this has been in recent weeks. Pneumonia set a tone we are struggling with. It brought some mean thoughts to the surface. A tone that reminds us that cancer isnt enuf. It doesn't stop there. Every one of us is still vulnerable to other illnesses, accidents ( Like the one before we left for clinic, a great beginning to a Monday morning -G tripped over a train bridge while throwing a fit and down he went-face flat onto the hardwood floor busted lip and all. I was scared it would not stop bleeding but it clotted rather quickly and what better place to be headed to than the hospital anyway. It was just nerve wracking bc it took me a while to determine where the bleeding was coming from and how bad it was. His bottom teeth went right thru his upper lip. No stitches tho. But that is how I left T that morning. I yelled at him after leaving his trains in a walkway area which we constantly remind him not to do. It is still a living room after all. I yelled and threw the bridge and then later found out I wasnt coming home to him that night. That thought amongst others made me cry right then and there in clinic. I felt like the worst mom ever. That fear of abandonment I may have left him with upset me so much. I ached down to my bones ), etc. Life still goes on. We weren't handed the cancer ticket and told "don't worry about all the other negative stuff that life hands you-you got enuf on your plate-you get a free pass on all the other crap". We still deal w the frustrations of flat tires, broken light fixtures, a 5 yr old's fever, an infant's eye infection, the death of a dear friend's father, and other family dramas. We don't get to push the pause button on all of that. And cancer sure doesn't care about what else you have going on at the time. It's diagnosis and drama hit at any and all times. It is never convenient for anyone. No one deserves it. Whether it's crushing the most recent awe over the goo goo gah gahs of your new addition to the family, the emotional spirit of your 5 yr old, the twinkle in your husband's eye or ignoring your holidays-cancer is not kind. Yes, it pushes you to be more positive than ever about the future and what NEEDS to happen daily in order to get there, but in the mean time you find yourself crawling instead of sprinting thru life. I ulitmately can't describe it's depth and hold on us. I guess you just have to live it and I don't wish this on any of you.