Friday, March 27, 2009

Bitter Sweet

Today was bitter sweet. It wasn't what we expected for day zero of maintenance. After six months of pointing us in this direction, and the last two months especially hearing the repeated "you're almost there" from doctors, nurses, and friends all with smiles plastered across their faces, I think our expectations were a little skewed. We had even begun to nod in agreement, smile back, and repeat the mantra "we are almost there". But secretly, I wondered.......almost where?



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.


"He who is full loathes honey, but to the hungry even what is bitter tastes sweet."
Proverbs 27:7

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.

16 comments:

CeCe said...

Mrs. George,

That is great! You are now on day 1! I am excited for you guys. I know it will still be worth it, because he will be able to do a little more. You just need to take it a little at a time. I will keep praying for CJ!

Dear Heavenly Father God,
I pray with all my heart that CJ will be able to go to his celebration on the 4th, and please help him be able to take all his pills God. Please help him remember every day that so many people love him, and are praying for him. Please help Mr. and Mrs. George. Please help them to be able to help CJ through this God. Thank you so much for this family God. They are such a joy to me, and they are so encouraging.
Amen

I love you guys! Prayerfully I will see you soon!

In Prayer,
In Christ,
In Love,
CeCe

Anonymous said...

CJ,
I saw the pictures your mom and dad put up of you with your cowboy hat on. You look like a handsome Virginian -you would fit right in up here. I know you write poems, but do you write stories, too? I'd love to read one about a cowboy, your age, who is a brave hero like you are! We love you, CJ!! aunt Karen and Uncle Terry

Anonymous said...

I am so sorry that C.J. had such a rough day, just reading about it made me feel ill. He and your family have endured so much these past six months, my prayer is that Gods grace and mercy will bring a much easier 18 months for him and all of you.Isaiah 40:29 He (GOD) gives strength to the weary and increases the power of the weak.>>>>>>> May our Father in heaven give his mighty power to C.J. for I know he is weary and tired of doctors and hospitals.I pray his heart will be filled with the love and peace only God can give.I pray for a complete healing, and that all organs will be protected and that no infection will invade his body.I also pray that God will give his strength to C.J.s spirit that he will be lifted above this illness. Father I also ask in the name of Jesus that everyone will continue to be constant in their prayers for C.J. for without hope in you oh Father we have nothing. Amen God keep you in his care and surround you with his love and peace. You are all loved from the depths of my heart.

Anonymous said...

We are praying that CJ will not be sick or react from the meds he received today. We are also praying that his counts will go up this week and allow you to follow through with his birthday celebration scheduled for next Saturday. We will agree in prayer that CJ will not be so anxious about having his port accessed that he causes himself to become physically ill and 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. We are petitioning God that his body will tolerate the medications and that your hearts will tolerate the medications. We are also asking that you remember all the details as to when and how many he needs. Most of all we are praying that God uses this time to heal his body and garner strength for what may appear to him now (and also to you all) to be a lo-o-o-o-o-ong time from now. God gives us one day at a time to meet each day with His grace and His blessings. We count them one by one because sometimes that seems to be how they happened. You are not in this alone. There are boocoodles of people all over this world praying for your family and this special young man. Lord, we need a healing and You are the Great Physician. Help us as we go through these trying days to take them and use them for our good and Your glory. In Jesus' name we pray and the world says, "Amen!"

Love and Prayers,
Mary Boggs and Family and
Friends of CJ and Family

Janet said...

CJ, we praise God that you are doing this well, that He has carried you through this and has protected your good organs, like we've all been praying. We know it's not been easy and it's not completely over, but look how far you've come! No, look how much He's done through you, for you and in you. He has revealed Himself to you and through you. And He has greater things planned for you.
Just keep your eyes on Him. Continue to trust in Him.
We will continue to pray for you.
Psalm 62:5
Find rest, O my soul, in God alone; my hope comes from him.
We love you,
Sedano family

Martha said...

Dear Dawn,

We will surely pray, I was talking to my mom today, I was telling her about CJ's story, I can say as a cancer survivor my mom was very touched by CJ's story, and my nephew's as well, she told me she has been praying since I first told her about CJ, she will continue to pray for CJ and your family. I will put CJ in my church prayer chain, my mom and her friends they call each other everyday just to pray, and CJ is included in those prayers.

I love you guys!

In Christ,

Martha

ILY (hearts) said...

Praise be to GOD!!!!! I am very happy to hear that there is only 18 months to go. I know it has been a rough road but, I also see Jesus all over that road and for that we are all thankful. Let us all focus on HIM and not the 18 months. Let us all look up. Not to the sides or back. Let's stay focused on the big picture and that is that CJ be healed and that the Lord continues to use him.
I myself suffer when I have to have blood drawn I make myself sick to the point that I vomit and pass out. So I know what CJ is feeling, it is the worse to have anxiety, and more so when you are a Christian (I tell myself). Be strong I tell myself, be strong your children are watching you but to all my efforts I have failed many times. I have to do this twice a year and I fight it all the way. I have also realized that satan enjoys this because I loose focus on God when I feel anxious. So PLEASE pray that CJ be totally healed of any anxiety...this coming from someone that is fighting it herself.
I love you guys,
ILY

Tammi said...

Dear CJ:

I'm so sorry you were upset. I know that you are the only one, (besides God and His Son) who knows what you are experiencing in your heart. I am praying for you and I love you, every minute of everyday.
Love Aunt Tammi Jo xoxoxox

Anonymous said...

hey C.J, I can't say that I know what you are going through, and that I have the remedy for all your problems. But, I can remind you that you have a Great High Priest, whose name is Love! He will never forget you, or the trials that you are going through. Your soul was purchased with His blood, you are his child, He loves you!!! Many times God will break us down, in order to build us up to be much stronger than we were before. Stay strong buddy :)

Joe

Janet M said...

Hi CJ, It was great to see you and your whole family at church on Sunday. It was so nice to see you with all your friends --Your smile was big! We are so looking forward to celebrating your birthday party with you. It is going to be a great day. Of course, we are still praying for your courage as you go through maintenance. I pray that you will be like Joshua -- Strong and of good courage. I remember when Mr. Mahfood had 8 operations in a matter of months. The same thing happened to him. Before the last few operations he knew what to expect so he would throw-up before the operation. It was a very hard time for him and me as I would watch him feel so bad. So be strong and couragous, do not be terrified do not be discouraged for the Lord your God will be with you wherever you go. The Mahfoods love you!

poppa jerry said...

Hello CJ and family....We, (Aunt Jackie, Harold, Kevin and Kyle and Poppa Jerry), just got back from our trip to Gainesville and Orlando. Your Aunt Tammi and cousins send their love and kisses. In Orlando, we had a good time watching Kevin doing the games, etc., and swim in the big pool. We all are looking forward to taking you there as soon as you are ready.
Unfortunately, your Aunt Jackie and Kyle have come down with bad colds which means - no visits from any of use until the all clear. We should be able to come to your party next Saturday if all goes well.
I have invited our small congregation from Olive Tree. However,the party falls on Shabous, but they will try to attend in the later afternoon.

I know this new phase of treatment has turned out to be not what we expected....but I know how really strong you are...You have always been able to take the fuel from your Mom and Dad and fill up your tank and make your way through each challenge. The race is on...it's not over yet...but the end near! So keep up your courage (there is no question about you faith) and the finish line is coming into view.

I love you...I miss you...see you soon,
Poppa Jerry

Anonymous said...

Hi Dawn and CJ,

We know you have all endured so much already these last 6 months and that the next 18 seem long and hard. So it sounds so strange for me to say that I am so happy that you have reached this new phase. You have all come so far. We continue praying for you and hoping for the best weather on the weekend!! Wish we could be there!

Love

Nicole Ana Alberto

Anonymous said...

You guys have endured so much. As a mother, watching your child suffer is such a hard, if not the hardest, thing to do! It makes me think of Jesus suffering on the cross in front of His mother standing by watching, helplessly. But, only if she knew the glorious outcome of the trial. I remember a while back asking GOD to bring the bible to life for me. I needed help with seeing that those were REAL people going through REAL trials. I needed help relating. As you can see, He points out just how real it all is in moments like this. I don't know if that makes sense to you, but He has made it make sense to me. Poor little CJ, my heart breaks for him. He has every right to feel bad and not want to go to those appointments. I can not imagine having to endure all of these spinal taps, chemo, pills, port accessing. It does seem sureal that this maintanence phase was such a big landmark that we couldn't wait to get to just to find out that it is more pills to swallow, ports to access, low blood counts, and spinal taps. BUT GOD DOES KNOW what lies ahead and He has plans not to harm us but plans to prosper us... I pray for the cancer to disappear and stay gone with CJ's continued treatment. I love you guys.

Aunt Jackie

Dawn,

I am glad you informed us about the chicken pox exposure. The baby is due for his vaccinations and I will have to make sure to keep the baby away from the family for a couple of weeks. I will let you know when we schedule the appointment and discuss with Dr. Samuels how long we should stay away.

Anonymous said...

Hello George Family,

I have been following your blog and sharing it with my family and friends. I am so happy that CJ has reached this new phase. I will continue to pray for God to guide and give him strength through this new phase. Every morning at my son's school they continue to pray for CJ's. I will share the new information with the director of the school.

Love and Prayers,
Nellie, Erik, and Blake Barrios

Amy Derrickson said...

As I read you post today, my mind couldn't help but keep going back to the Sunday morning that I read your first email about CJ's cancer. I was already running late for church, but Chris was still in Afgh, so I just wanted to see if he had a chance to write me before I left. My heart absolutely broke for you, and all that day I was in and out of tears. It still makes me cry just remembering. My constant prayer was that God would miraculously heal CJ. Now it is six months later (though it seems it's been much longer), and although I still pray for CJ's healing (as do the kids), I find that my prayers have changed for you and him. I find myself praying more that God would continue to use you all as a light to the world. What an awesome responsibility you have had as you have exposed your lives to the world. God has used your family and experience in mighty ways, and I believe that no matter what the next 18 months brings, he will continue to do so. I have been so blessed by your posts and am often in tears by their end, whether joy or sadness. My tears of sadness right now come from finding out about CJ's birthday party and wishing so badly we could be there. But I have tears of joy that God brought you into my life (3 years ago I think around this time), and I have been able to witness, even as if watching through a window, how God has used you and is actively working through your life. There are no accidents or coincidences; our God is just absolutely amazing.
I love you guys and wish I could see you.
Amy Derrickson

Anonymous said...

Hi Dawn,

I know we haven't spoken in years, but I wanted to write and thank you from the bottom of my heart. I have been following your blog very closely, and I cannot express to you the emotions I go through as I read each posting. I can feel God's hand in your writings; your use of Scripture is wonderful, and, although we're hundreds of miles apart, I feel so close to you in my heart.

I have been praying for CJ and for all of you, and I will continue to pray. I know I can't even begin to feel all that your mother's heart is going through, but I do feel how strong your faith and spirit are, as well as CJ's. I can tell from your words that he is an amazing little boy, Dawn, and I know he brings you more joy than words can say. I know God has CJ in his hands and heart and that is where he will stay.

There is nothing that I can say to you about God's unfailing promises and love that you don't already know. I just wanted to let you know that your words move my heart and soul, and I feel the Holy Ghost stir in me through CJ and you.

I love you, Dawn, and I love CJ. More importantly, God loves you, and I just have to believe that He will carry all of you through this and bring healing for CJ. That is what I will continue to pray.

God bless you all,
Shellon Johnson, your sister in Christ
St. Charles, IL