Where are we almost to? Maintenance? Remission? Life after cancer? The dreaded normal? Is there less fear there? Is there less worry there? Will God still use me there? Will CJ be better there? Will I know what to do when I get there? And worse even, will there lead me back to here? Yes, I mean the dreaded 'r' word. Well, today we finally arrived there. There turned out to be the "long term maintenance " phase of CJ's chemotherapy of course.
I was eager to get to the hospital this morning and see if CJ's counts would allow for him to begin this long awaited phase. There was only one problem...he was not eager to get there at all. Actually, he was quite defiant and depressed about going. No matter how we tried to encourage him that this was what we had been trying to get to, he wanted no part of it. It made me wonder if he knew something I didn't. Why isn't he happy? I wondered. Why isn't he relieved? Wasn't this the goal? CJ maintained his disappointment and left a broken hearted dad in the driveway as we pulled away. He refused to sit up front with me and instead sat behind me so I couldn't even see or talk to him. So as I drove to the hospital, I began the tap dance I am no good at but am becoming all too familiar with. Talk or not talk; initiate or wait; pray or listen to music; encourage him or distract him; discipline him or feel sorry for him. I tapped through all the steps and missed quite a few I am sure.
After dancing all over God's toes, we arrived at the hospital to find that his blood counts were in a safe enough range to begin this long awaited phase. Surely, this is good news! We are there! But it was not good news for CJ. This meant he would stay and receive the spinal tap he was fasting for, chemo, and begin oral meds. To welcome this new phase CJ began immediately throwing up. He has never done that before. He threw up before they accessed his port and he threw up again after they accessed his port. He felt sick the whole time. It was so strange to finally get to this long awaited phase and for him be sick. But that is how we entered day zero of long term maintenance.
So what is maintenance? Recently, I was once again given the 'here's your life packed into 5 minutes' talk to explain what the next 18 months of our lives would look like. Maintenance is actually six-83 day phases that repeat themselves adding up to a total of 18 months. We have been given a projected end date of 9-19-2010, provided everything runs the course as planned. Since maintenance always seemed to be the goal in sight during the is first six months, the place we were determined to get to, I was anxious to hear about how great it would be. I must admit I was a little surprised of all it will entail. Here is what we were told:
Maintenance will consist of spinal taps that take place roughly every 28 days as well as administering the Vincristine through his port during those appointments. Those spinal taps will taper off as the months pass by. The bulk of his chemo will be taken daily at home by mouth. He will be on multiple medications that will all have similar side effects to those he has taken up until now. Some medications require him to take up to 9 pills at a time. Others are three times a day, some are everyday for the entire 18 months. Some are to counter the other meds he is getting. All are to attack any remaining cells and prevent any new cells from developing. Hearing this long list of medications that CJ's body would have to injest for the next 18 months was let down number one.
When he is not coming in for the spinal taps he will come in for blood counts. His blood counts will have to be monitored throughout the entire 18 months. But here is the catch.....they will be monitored not because they want to make sure they are not too low.....but because they want to keep them low! Huh? I know, sounds confusing right? I was surprised to discover they actually keep his blood counts down in a 'below average' range throughout the entire 18 months of maintenance. Let me explain as simply as I can. (If you do not have a basic idea of how chemotherapy works you may want to read the post where I did a mini chemo lesson here: http://georgefamilybreakthemold.blogspot.com/2008/09/wednesday-spetember-24.html
If you do remember the old post then you remember that in your Complete Blood Counts you have white blood cells, red blood cells, neutrophils, hemoglobins, etc. Your ANC stands for your Absolute Neutrophil Count which is a calculation of your different blood counts to determine your bodies ability to fight infection. So when we say CJ's counts are low, we are usually referring to his ANC. Of course if your ANC is low, it is usually because your other counts are low or off as well. But the ANC is THE NUMBER we look at. The normal ranges for ANC are 1.5 to 8.5 We were surprised to be told that CJ's ANC will be purposefully kept between .5 and 1.5 throughout all of maintenance. As you see, that is just below average. "Absolute Neutrophil Count (ANC) of 500-1000: Carries with it a moderate risk of infection." That was let down number two.
We were then told that we would still have to be cautious of exposure to illness especially chicken pox and infection. We were told he will still be admitted to the hospital if he has a fever of over 100.4. We were told that we would 'wait and see' about when and what sports he can do. We were told he probably won't be allowed in the lake at all. That was let down number three.
So I began to wonder, what will be so different about maintenance and why were we so excited to get here? I asked the doctor this question and was reassured once again that it will get better. I realized the big difference is that this is when most kids prepare to re-enter school. CJ is homeschooled so he does not have that milestone to mark the success of his journey. So maybe CJ did know something we didn't know. He still has a long way to go. And he still has a lot of sacrifice to make in order to get better.
Let me just say that despite all the disappointments we experienced today, we are extremely grateful to be entering maintenance. Despite all the of the let downs, tonight we are rejoicing in God's faithfulness. There is a sweetness about the Lord's presence that offsets the bitterness of the trial. We remain hungry for Him and search for His presence regardless of the circumstances. As I encouraged a friend today that her joy can not rest in her circumstances or it is sure to fail, I realized I too can not respond to what I hear or see but only to what I know. Then, the bitterness tastes sweet.
We are extremely thankful that we made it all the way to maintenance without one unscheduled hospital admission or infection. Thank you Lord Jesus! We pray we make it through maintenance with the same results. We give all the glory to God and thank each and every one of you for your prayers. Especially the children who prayed for him. Somehow, I sense that the prayers of the children who were so persistent in prayer for CJ were powerfully effective in reaching the ears of the Lord Almighty and He responded. We are so grateful. We have completed the first leg of our journey and we do plan to celebrate no matter what trials or disappointments we face ahead. However, we are still in need of your prayers:
Please pray that CJ will not be sick or react from the meds he received today. Pray that his counts will go up this week and allow us to follow through with his birthday celebration scheduled for next Saturday. (Remember, you are all invited. See post below for details.) We are getting blood counts on Friday morning so we will know for sure by then. Remember to check here for the final announcement on Friday afternoon!
Please pray that he will not be so anxious about having his port accessed that he causes himself to become physically ill. Pray that he will have the strength and endurance he needs to manage all the home meds and swallow all the pills he needs to take on a daily basis. Pray that his body will tolerate the medications and pray that mommy and daddy's hearts will tolerate the medications. Pray we are wise and alert and mindful of all he needs to take when.