At this time they are stopping all medications he receives, not only the chemo meds. The doctors think the Bactrim (an antibiotic he has taken since day one) may be the culprit and hope by stopping this drug he may rebound. On the bright side, the doctors felt there is a good possibility due to the indication of other numbers in his counts that he may already be on the rebound. I don't understand it all but what I do know is he is lower this week than last, so if he is going up now, it must have happened very recently.
I copied this from a website to help you understand the importance of the ANC:
Absolute neutrophil count (ANC) of 1000-1800: Most patients will be given chemotherapy in this range. Risk of infection is considered low. (Mild neutropenia)
Absolute neutrophil count (ANC) of 500-1000: Carries with it a moderate risk of infection.
Absolute neutrophil count (ANC) of less than 500: Severe neutropenia - high risk of infection.
CJ was somewhere around 269 last week and now is at 189 this week. Therefore, he falls in the Severe neutropenia category and is at high risk for infection. To top all that off, I am sick! I have a severe throat infection that is very painful. I do not like that he stopped the antibiotic while I am sick and in such close contact with him. Having the added concern that CJ is at risk while I am sick has caused me to consider possibly staying away from the home until I get better. We have not made that decision as of yet. As of now we are isolating me from him as much as possible within the house. Please pray I don't infect my child!
As CJ has basically no ability to fight against infection we are grateful to serve a God who has every ability to fight against infection on his behalf. We are completely dependent on Him as we are stripped of dependence on any other means. So let's storm the throne of grace once again and beg for mercy in our time of need.
When Chris called from the hospital this morning to tell me the news of CJ's counts, I went into hyper-disinfect and clean mode before they could get home. All the instructions we received back at week one of diagnosis warning us of all the risks of neutropenia and infection ran through my mind. In many ways, these results put us back to those first days of isolation and separation that we thought were far behind us.
Cancer is really such a cruel and deceitful disease! It teases you by letting you make progress only to regroup, reappear and attack all over again. We recently lost two little girls (both CJ's age) that both went into maintenance and were "cancer free" at one time before this monster pounced again. At the same time, our sweet friend Ji (also CJ's age), who was making progress towards recovery, now faces the set back of a second bone marrow transplant.
I realize CJ's counts plummeting don't qualify as comparable to these situations in any way, but it all demonstrates the cruelty of this disease that lets you think the worst is behind you and then betrays you.
But even as we are surrounded by the effects of this cruel disease we give thanks to God that His word assures us he is unchanging, cannot lie and no deceit is found in Him!
"...(we have) a faith and knowledge resting on the hope of eternal life, which God, who does not lie, promised before the beginning of time..." Titus 1:2
In regards to my dad, today was a rough day. I dealt mostly with anger and frustration for the massive mess he left us by leaving us this way. So much is unsettled for us emotionally because of the way he died, and then having to deal with so much unsettled legally, is just an added burden. Burden...that really is the key word here. We had appointments with the bank today and emotions are still so raw that it is difficult to 'do business". But it must be done! As we were trying to make sense of the mess, I could not help but think we should not be there and it is all some big mistake. Surely there was an explanation for all of this somewhere. I kept half expecting my dad to walk in and straighten the whole mess out for us.
Based on our experience this past week and especially today, my advice to all of you is to express your wishes to a loved one before they have to make these very personal decisions on your behalf. Write them down and by all means necessary get your will and estate planning in order NOW! The kinds of decisions we are having to make and the disaster we have inherited is not necessary for anyone to go through. We inherited a burden of grief and a burden of legal matters. There are so many ways to protect yourself and your loved ones from this. I realize, it is never pleasant to talk about these matters, but one thing I can guarantee every one reading this is that you WILL die one day, and it WILL be painful for those left behind no matter the circumstances, and the least we can do is make it as easy as possible by settling these issues now. In light of all we have experienced, Chris and I have talked to each of our parents and plan to revisit our estate planning.
Of more importance, please hear me when I say the state of your soul is of the utmost importance in planning your death. Settle that account first my friend! Kneel before your maker and humble yourself and surrender your life to His sovereign control and accept the payment already submitted on your behalf.
Humor me for a moment.....If you broke a law and went to pay the fine, (which you could never cover anyway), only to discover someone already paid it on your behalf, the only thing that can keep you from accepting it is PRIDE. Foolish pride! Humble yourself and accept His payment on your behalf. You could never pay it anyway. And once again, only pride makes you think you can.
After you have settled that account first, then take care of your other matters. Your kids, your home, your investments. Get good advice. Know the facts and the differences between wills, trusts, beneficiaries, etc. You will not only have peace of mind but you will not leave a burden to your loved ones at an already difficult time.
Forgive me for being so forward and I apologize for all my venting on this matter. I realize our circumstances are unique and they bring added emotion and legalities compared to most deaths. But like I said, we will all die one day and leave behind the details to our loved ones in one way or another. Choose the better way! However unwelcome, this tragedy has afforded me the rare opportunity to experience these delicate and difficult matters first hand. If me sharing about our mess can save one family from going through this, then so be it.
As I end this post, I once again reiterate our plea for prayer for our precious CJ. We pray for his physical protection as a matter of high importance, but we also pray for his Spiritual protection as he deals with the outcome of his low blood counts. We see his struggle in submitting to our authority and trusting our decisions whether he likes them or not. He "feels" good so it is difficult for him to wear a mask and be told he can not participate in his playoff games after a long and hard season with his team. He misses them and he misses playing. We understand but we can not change the facts.
Thank you for bearing our burdens once again, and in so doing, fulfilling the law of Christ. (Galatians 6:2)
Humbly yet boldly,