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.

You're ALL Invited

You are all invited to celebrate CJ's 10th birthday and God's amazing grace with us as we get ready to begin long term maintenance. Yes, I said all! Family, friends, faithful blog readers, prayer warriors, supporters! Whether we have ever met you or not, we would like to invite you to celebrate with us.

In God's perfect timing, CJ ends this initial intense 6 months of chemo and begins long term maintenance at the same time he turns 10! How fitting. One milestone marked by another. We simply must celebrate both! We plan to do this by renting a pavilion at a local park and asking all of you to join us for an afternoon picnic and time of celebration.

We have thought extensively about how to do this in the most fruitful way possible and we think the best way is to set the date and time, announce the location, and invite you all to come. We will be providing a bounce house for the little kids and some sports and activities for the older. (CJ has been itching to play a game of flag football with friends!) We will be providing some drinks, cake and snacks. Since we have no idea how many people might possibly show up, we decided the best way to handle the food was to do this 'picnic style'. The way we would handle that is this: You would come to the park and bring lunch for your family. Pack a lunch, pickup subs or sandwiches, pizza or the like and bring it to the park. We will all picnic together and just enjoy the afternoon with families and friends. This will free us all up to just visit and enjoy each others fellowship without the burden of cooking.

The date we have picked is Saturday, April 4th at 11am.
The location of the picnic will be announced as soon as we secure one So far we have had no luck. Praise GOD, after multiple calls and internet searches we finally found one! The location is one block from our home in North West Miami Dade at North Palm Baptist Church 7801 NW 178 Street. Miami, FL 33015. (We live of the Miami Gardens exit and I-75) Thank you Lord for allowing all those no's to lead me to this greater YES!

What we are hoping to do is start getting a head count of who can come to help us better prepare. Can you please rsvp to me by posting a comment or sending me an email at dawnison@gmail.com.

IMPORTANT NOTE: To be completely fair and upfront with you, I must tell you that this will be completely dependent on CJ's response to the chemo he is receiving this week. It has the potential to have a delayed effect and knock his counts way back. We are praying that does not happen. However, if it were to happen there may be a last minute cancellation. So I would urge everyone to check here right before going to the park that Saturday to be sure we are still a go. *This was also another reason we decided on picnic style. We knew if we had to cancel because of his counts we would have lots of food to store and this may be difficult.

I am open to suggestions and looking forward to spending an afternoon with all of you. Please come! Please do not think to yourself that this is a time for family and close friends only. We really do want to meet all of you who have prayed so faithfully for us, encouraged us through this blog, cried with us, purchased bracelets, supported us, etc. Come out and wish CJ a special happy birthday. Picnic, play football, party with us, pray with us! There will be a special time of thanking God for all He has done for us through all of you throughout these 6 months.

The theme for this party is Grace! God's amazing Grace! Not just his Amazing Grace that was poured out for us on the cross, but his continual grace that sustains us and empowers us day by day taking us from strength to strength in the midst of our joys and our trials.

As a special note to all of the faithful long distance blog readers and prayer warriors...we wish we could celebrate with you face to face as well, but we will settle for heart to heart. You mean so much to us! We are extremely grateful for your love and support and prayers. We look forward to our paths crossing sometime in the future, or ultimately, on the golden path in Heaven.

Set the date aside:

April 4th, 11am.
North Palm Baptist Church
7801 NW 178 Street
Miami, FL 33015

Remember the Theme:
CJ's 10th Birthday
and
God's Amazing Grace

Furthermore...You are all invited to celebrate CJ's actual birthday with us the very next day by joining us for our first Sunday back to church as a family on Palm Sunday April 5th. So if you can not make it to the park on the 4th, or you just want to keep celebrating with us we would love to have you with us for this special day! We meet in Miami Lakes Middle School at 10am.

The following Sunday, April 12th is Easter. If you do not have a church home we would love to celebrate this most special holiday with you and your family by inviting you to church with our family. We are so full of joy and thankful that CJ is finally going to be able to go. This one aspect of his treatment has been very difficult for our family. Of all Sundays to finally be there as a family, Easter Sunday will be such a blessing. Come celebrate the Resurrection of our Lord with us. And if you don't know Him personally, come and meet Him. Come hear the good news of His life, death and resurrection and what it means specifically for you!

"Do not be afraid. I am the First and the Last.
I am the Living One; I was dead, and behold I am alive for ever and ever!"

(Rev. 1:17-18)

A HUGE thank you to Pastor Sablan and all of our friends at North Palm Baptist Church for allowing us to have this time of celebration there. We were about to cancel or change the date since we had no luck with securing a shelter. We are so grateful for your love, support, and friendship to us and our family. Thank you for providing for our 'need' in this way. We look forward to celebrating CJ's life and recovery with all of you! We love you, The George Family

No Room in the Inn (or hospital)

It has been a long and interesting week for the George family. It started when we celebrated our daughters 13th birthday on Wednesday. We took her horse back riding, out to dinner and ended the day with a family movie about a little boy who wants to ride in the rodeo. I chose this movie because we took her to her first rodeo last week to celebrate her birthday. (She is our horse fanatic). Not ten minutes into the movie The Ride, there was a scene where the little boy was in the bathroom after a rodeo because he was sick. As he was throwing up, CJ leaned over to me on the couch and said, "Mom, how much you want to bet that boy has a bald head under that cowboy hat?"

I said, "No, I don't think so. I read the cover of the box and it did not mention anything about a boy with cancer." Dad was up off the couch looking it up on the computer within seconds. Sure enough, the little boy was bald as a bat just like CJ and had cancer. I can not tell you how many times this has happened to us since CJ got diagnosed. Let me just say, you watch a movie like that in a whole new way once you go through something like this. I guess our options are to jump up and turn it off, but I can't imagine the message that would send CJ. So you watch it in a surreal sort of way and hope the boy doesn't die in the end so you won't have to have that conversation, again. I don't want to ruin it for anyone who wants to see it because it is a good movie with a great guest appearance by Franklin Graham, Billy Graham's son, but lets just say we prayed a little harder that night.

Then, for the second time since this began, I found myself standing at a friends house watching my daughter and her friends have a great time after having spent the first part of the day watching my son get chemo at the hospital. Those are the kind of days you feel like the morning was last week and not just a few short hours ago. I sat there and watched the kids have a good time and thought, is this real? Am I the same mom that sat next to one child' s bedside in a hospital while he cried tears of fear when they accessed his port, and now I sit and watch another child giggle with joy at a party with her friends. As a mom, I experience the gauntlet of emotions along with my children. When they suffer, I suffer. When they rejoice, I rejoice. I suffered and shed tears for CJ as he cried while I held him when the nurse accessed his port, yet I rejoiced and giggled as I snapped pictures of my happy daughter with her friends. Needles to say, after a truly roller coaster day like that, I collapsed exhausted not sure of what I feel. One thing I do remember feeling that night is thankful. Thankful that all my children were under one roof, home in their rooms, tucked in their beds, asleep.
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With CJ's last scheduled overnight admission for chemo officially behind us, I truly hope and pray that was the last time I have to sleep in my bed knowing my son and husband are sleeping in a hospital across town. That is an extremely difficult and helpless feeling because when he is there I have to convince myself that he is where he needs to be, yet everything in me believes he belongs here and not there. Besides, we will always have a room for him here!

We arrived at 8am on Friday for the admission only to discover they did not have a bed or room available for CJ. What is interesting is I actually thought about this on the way to the hospital. I was praying for CJ to have a nurse he was familiar and comfortable with. We even talked about having his port accessed at the office instead of when we got the room. Then I thought, what if there is no room? But I reasoned to myself, surely they will have a room ready for a scheduled admission. They know he is fasting for a Spinal Tap and would need to be processed quickly. My reasoning failed, when not only was there no rooms available at the hospital, but we were even removed from our room in the doctors office so they could give that to another patient. We made our way to the waiting room that was filled with the smells of freshly popped popcorn that he couldn't eat. They apologized profusely for the inconvenience. However, I did not feel inconvenienced. A little sorry for CJ having to smell the popcorn and not be able to eat, but not inconvenienced.

After scrambling and trying to find him a bed with no luck, they decided to send him over to Pediatric Ambulatory to get started. We made our way there and although usually busy, this time it felt like we were entering a bustling city not a small pediatric unit. It was loud and packed with people with different illnesses, disabilities, languages and cultures. Multiple TVs were blaring, people were in and out, kids were yelling, parents were arguing. We were on sensory overload.

We were told we would have the Spinal Tap there and be sent upstairs as soon as a room was available. After having his port accessed which was quite emotional for him, the Spinal tap didn't actually happen until close to 2pm. When we finally got started and CJ was put to sleep, my heart sank when I realized that in all the chaos we forgot to put the EMLA (numbing creme) on CJ's back. The nurse apologized profusely for her oversight. But I wasn't upset with her. After all, I forgot too. They assured me that although CJ would not remember it, he would certainly squirm more without the creme on. They all held him tightly as the needle entered his back and he certainly 'squirmed' as they said he would. I don't think I will forget to put the creme on again after seeing that.

He woke up shortly after and we made our way back out to our cubicle to await a room. As time passed, they decided to do his chemo there as well since there was no room in sight. Little by little all the patients were cleared and sent home. (This is a unit that closes at night) The place began to empty out and quiet down as we waited and finally rested. Hours ticked by and soon we were the only ones there. I began to wonder where we would end up for the night if they did not have a room. They apologized profusely for the inconvenience and let us know they had not forgotten about us. I did not feel inconvenienced. I think they were surprised I wasn't more agitated by that time. But I knew something they did not know... I knew we were right where we needed to be. No, it wasn't what I expected when we came for an admission, but it was what I asked God for. I was convinced He sent us where He knew CJ would be the most comfortable with familiar nurses and surroundings just like I had prayed. He knew where we were. We were not alone and certainly not forgotten. As I lay there in the quiet and held my son, I began to think about a time when another mother entered a bustling and noisy city full of different languages and cultures. There was no room for her or her son either. I imagined how the hustle and bustle must have slowly turned to a quiet calm when the city slept and she finally held her son in her arms. And although it wasn't where she expected to be when the day began, God knew exactly where they were. And she knew she wasn't forgotten.

Hospital admission behind us, CJ is home now and that's all that counts! Or is it? I have started to catch myself when I use that phrase "all that counts' and at the same time hearing a voice inside me whisper 'is it really'? Is the here and now all that counts? Is realizing the ends of the means all that counts? Is getting to the finish line all that counts? Is getting over the next big hurdle all that counts? I would have to say I know that is not true. It actually counts how I handled the delays and the inconveniences at the hospital. It counts what impression I left on the people and nurses around me that day as the obstacles came. It counts whether or not I trusted God during the trial or just made it through. I am realizing what happens in the valley does not stay in the valley. It counts! I really want to make this time count because it is not just about finishing but finishing well that counts.


Prayer Requests: Please pray that CJ will once again maintain his blood counts at safe levels until we reach the end of this phase. Please pray for him to stay healthy and protected against infection. So many people we have been in contact with have been very sick and we are trying to balance our exposure to others with wisdom and fear. Please pray that the chemo will do it's job and only it's job and that all CJ's organs will remain healthy and unaffected by the medications. Most importantly, pray that CJ will continue to draw near to the Lord through regular reading of the Word and daily quiet time with the Lord. The other day he came to me and said, "Mom, do you remember the other day I cried a lot and was afraid about my port? Well I had skipped my devotions the night before because we were up late for Allie's birthday. But I feel better now that I started again" He related the increase of fear to his time away from listening to the Lord speak to him through the Word.

I HATE CANCER

This is the note I woke up to one morning early this week. CJ often leaves me notes to find in the morning. Most are filled with words of thanks for something or encouragement when he senses I am down. Some are filled with scripture and expressions of love. So you can imagine my surprise to wake up to the above note expressing quite passionately his hatred towards Cancer. My heart ached for him when I saw it because I knew he wrote that note after everyone was sound asleep and he was up all alone fighting against going to bed. He wasn't fighting sleep per se but fighting the fact that his hair is falling out again. He refused to lay his head on his pillow only to wake up and see it covered in hair in the morning. So he grabbed a blanket and set up camp on the recliner in the living room that night. Ironically, the blanket he grabbed and wrapped himself up in was covered in a poem that describes all the things cancer can not take from you. Things like Hope, Peace, Friendship, Love, Courage, Memories, and Eternal Life. I pointed this out to him and he said the only thing the author got right was the eternal life part. That made me laugh and think: at least he knows his theology!


The Blanket

We continued to urge him to come to bed and reminded him that his hair will fall out no matter where he sleeps. But he reasoned that he would not be able to see it on the recliner. Therefore, he stood his ground and settled in for the night. After trying everything to coax him into his bed, we finally had no choice but to go to sleep and leave him there frustrated and sad. It was hard to leave but I learned my lesson last week (see previous post) that sometimes I just need to get out of the way and let God do His work in CJ's heart.
As much as I hated leaving him there in his grief, I knew I was not leaving him there alone. I knew that God, who loves my boy more than I can possibly attempt to, was there with him. No, he was not safely tucked in his bed, but he was safely tucked in the shadow of the Most High God. I am not exactly sure what transpired, but I assume it was a good fight since I woke up to the above note on the counter and him sound asleep in his bed. I figured that he decided to give in but not without one final stand, thus the note before surrendering to his bed.

"He who dwells in the shelter of the Most High, will rest in the shadow of the Almighty. I will say to the LORD, "He is my refuge and my fortress, my God in whom I trust".......Because he loves me, says the Lord " I will rescue him; I will protect him, for he acknowledges my name. He will call upon me and I will answer him; I will be with him in trouble, I will deliver him and honor him. With long life will I satisfy him and show him my salvation."
(Psalm 91:1-2, 14-16)

When he awoke the next morning, he was all smiles. I thanked him (sarcastically) for the beautiful letter he left me and this brought a huge grin to his face as if suddenly remembering what he had written.

Interestingly, his hair did fall out a lot that night. But it fell out in a manner that evened out all his uneven new growth. It was softer and thinner and lighter and really did look better. Even he agreed! His hair continued to fall out over the the course of the week but he has not complained about it once since that night. So whatever took place in the living room in the wee hours of the night must have been good! Oh, what I would give to be a fly on the wall of his heart during these times of turmoil!

Today, CJ had his appointment for blood counts. We had a short visit with the doctor and determined that CJ has neurotoxisity from the Vincristine (also called Neuropathy). This is caused when damage occurs to the nerve endings. Although unwelcome, it is a common side effect to the medicine he is on. The negative side to this is that he has trouble walking properly. He is still able to walk but it is awkward as his hips don't rotate properly and his legs just don't seem to work right. I don't really know how to explain it. This began gradually and increased quickly over the past two days. The positive side to this is that he does not seem to be in any pain and it is reversible with time. Since he is not receiving chemo for another week the doctors said to just continue to watch him and allow him to do whatever he is comfortable doing. We will continue to keep an eye on it as it progresses or, preferably, regresses.

CJ is due to go back next Friday for an overnight admission. This admission will include a spinal tap and various medicines that require him to be monitored overnight as he receives them. It will also be followed up by home health chemotherapy just like in the beginning.

Furthermore, we are half way to the end of this phase. Today is day 28 of a 48 day phase. Thank you Lord for bringing us to this point and for sustaining CJ. We surrender the remainder of this phase to You and ask for Your guidance and healing to be constant.

Prayer Requests:
Please pray that this Neuropathy reverses with no lasting effects. Please pray that CJ's counts (CBC's) will continue to stay strong even as the medicines attack his blood cells. Most importantly, please pray that CJ will continue to draw near to God for strength and comfort. That He would see God's loving hand guiding him every step of the way.


CJ giving blood