Monday, June 28, 2010

I hate Rhabdomyosarcoma

Final pathology is still not back but I want to post what we know at this time. Thanks for your patience as we have been trying to get the best information we can about what is going on with Zach. It was all pretty shocking to us last Friday as to “what does this mean, they found cancer?”

Final pathology could change everything I type below if it shows immature cells, which would indicate the cancer they found last week is new growth. Below is assuming final pathology shows mature cancer cells; which is the most likely of scenarios.

Here is the best information we have at this point. Zach has never been in remission. The cancer they found last week is still residual cancer from what was originally discovered in Zach back in June of ’09. I know this sounds crazy, believe me, it was very shocking to all of us. Basically this means Zach’s 42 weeks of treatment (chemo & radiation) did not get all the cancer. Good news, the Lord guided us to keep looking for cancer; even though we knew it was an aggressive decision since Zach’s scans have been showing clear for some time. Our doctor has explained its likely Zack’s cancer cells do not respond to the nuclear medicine used in PET Scans to light up active cancer cells and regular scans cannot show you what is happening on a cellular level inside the body; both are not 100% accurate. But as I said last week, they were able to remove the entire tumor during surgery last week and we HOPE all the cancer along with it! We cannot know for sure if they got all the cancer or not.

What now you ask? Our Dallas doctor helped us get four Sarcoma expert opinions from the best-known doctors/cen​ters in the U.S. as to what we should do next. Although the opinions are not all conclusive, the majority suggests we should wait and see and keep aggressivel​y looking for cancer. We have no way of knowing if there is one or one million cancer cells in Zach’s body. There is no blood test for Zach’s cancer. We must be able to see a visible tumor to treat him. Because there is no cancer we can see in Zach’s body right now, they do not feel we should treat with maintenance chemotherap​y at this time or pursue aggressive chemotherap​y which we will need to use if Zach has a true relapse. If we find cancer again going forward, it will be considered a relapse (we think!). We will have more scans in 4 weeks, the again in 6 weeks (instead of the normal 3 months). This is the course we are choosing at this time.

I personally have so much ambivalence about what happened last Friday when they found the cancer. We see the Sovereign hand of God directing us, helping guide our decisions against/amo​ngst the plethora of information from the medical world that would suggest A) we should not take Zach’s tumor’s out & B) there is no cancer in there and Zach is in remission; and we just want to shout PRAISE THE LORD! He guided us to move forward with the biopsy and He already knew there was cancer in there and that we could easily remove Zach’s tumor, not affecting any of his organs! This part of our heart is still thrilled and excited that we found the cancer when we did! The other part of our heart’s is still sad we found cancer and we don’t have any way of knowing if we got all of it. This initially leads to fear about the unknown. This is where we just have to lay it all down at the feet of the cross and beg God to remind us daily about the Truth and to put our trust in Him. Truth and trust that He is in control, He loves Zach more than I or our family could ever dream of, He has an amazing plan for Zach’s life (no matter how short), one that we know is already being used for His Glory. This life is about giving God Glory and Praise His Name Zach’s life gives Him Glory. So today, we rest in that. We don’t know the future for Zach, but thankful because we have the Holy Spirit living inside of us, we have the power to rest in God’s Peace and Truths.

As always, thanks for all your MANY prayers and concerns coming our way.



Much Love,

Julie & All the Cartwright/​Inman Families



​Isaiah 43:1-7.

But now, thus says the Lord, your creator, O Jacob, and He who formed you, O Israel, "Do not fear, for I have redeemed you; I have called you by name; you are Mine! When you pass through the waters, I will be with you; and through the rivers, they will not overflow you. When you walk through the fire, you will not be scorched, nor will the flame burn you. For I am the Lord your God, the Holy One of Israel, your Savior; I have given Egypt as your ransom, Cush and Seba in your place. Since you are precious in My sight, since you are honored and I love you, I will give other men in your place and other peoples in exchange for your life. Do not fear, for I am with you; I will bring your offspring from the east, and gather you from the west. I will say to the north, 'Give them up!' and to the south, 'Do not hold them back.' Bring My sons from afar, and My daughters from the ends of the earth, everyone who is called by My name, and whom I have created for My glory, whom I have formed even whom I have made" (NASB).

Monday, June 21, 2010

More Cancer? Praise God!

Sounds silly right. But how can we not.

Zach Had his follow-up scan 2 weeks ago and the scans were great. Praise God!

We, John, our oncologist and I, as a team decided to do a biopsy of the remaining tumor to make sure that what the scans were showing was true. The tumor was dead. We knew the probability of finding cancer were slim. Like looking for a needle in a haystack. We were told the as long at the preliminary biopsy came back negative we could remove his port and g-button. Praise God we were almost done with cancer!

Friday morning, June 18, we arrive at Children's in Dallas early at 7:30 am to do the 3 procedures. The 2 patience before us had canceled! We get to go early. They take Zach back and tell us to expect 3 hours of surgery.

One hour in the nurse calls us back and tells us Zach is done. Done?
Then we see Dr. Paul and the surgeon and we know. They found cancer. The biopsy was positive for Rhabdomyosarcoma cells. How? Why? We just finished 45 Weeks of chemo. But-The tumor we have been told is inoperable, is now removable! PRAISE GOD!

So no port removal, no g-button removal but we no longer have a tumor!! So now we wait. Zach is recovering at home now. We wait for news from the pathologist and Dr. Paul to make decisions with other Sarcoma specialist. But

PRAISE GOD we found it early before is spread. Praise God they think they got it all! Praise God for leading our paths and our Dr's path the right way.

Let everything that has breath Praise the Lord!

The Cartwrights

Tuesday, June 1, 2010

1 yr ago and

So​rry for the long break I took from posting, I’m back now.





Fun:



We had a great Off Treatment Party at Great Wolf Lodge back in April. Zach, family and friends had a fun filled weekend staying at the Lodge and playing in the indoor water park all day. Zach was so happy to be running around playing, laughing, giggling and have the time of his life. It was so great to see him so happy and we saw the first signs of his hair staring to grow back. It was a great way to celebrate Zach being off treatment.



Disney World was AMAZING!!!!!​ Make-A-Wish (northtexas​.wish.org) and Give Kids the World (www.gktw.o​rg) made our trip full of memories we will never forget! GKTW property, were Zach and family stayed was incredible.​ It’s a property that helps create memories for children with serious illness by bringing them to a special resort in Orlando. The housing, eating places, entertainme​nt & even the trash cans….all of it was built in such a way that it makes your stay magical. The playground was a life size “Candy Land” board game, including the gum drop & candy cane forest….the turf is decorated to be a life size Candy Land game; it was unforgettab​le to play with Zach and Aaron here. The swimming pool and splash park, the “Ice Cream Palace” that is open for every meal, the Safari themed Theater, the merry-go round, the train station, the clown trash cans that sucked in your trash when your hand got close to them…all of it was such a hit with the boys. We had “Christmas” one night and got to go see Santa and pick out presents, one of Santa’s Elf read to us and autographed a book of choice for Zach, we decorated cookies, had cotton candy, went on a horse drawn carriage ride around the property, decorated Zach’s “Star” that will be permanently placed on the Castle’s ceiling, I could go on and on. Sound like an amazing place? It was!



Disney World was UNFORGETTAB​LE as well! We had a special pass to not wait in any lines and boy can I tell you this made the trip so great for Zach. He was able to do everything in one park in one day & really make some special memories meeting all the characters, riding all the rides, and seeing some great shows. Favorite show was “Nemo the Musical”, favorite ride was Winnie the Pooh & Peter Pan, favorite characters to meet was Buzz & Woody, and by far favorite memory for Jennifer was the “Wishes” fireworks display. It was all about how each wish is special and each person or child should dream big and wish big. Jennifer said, “As I held Zach in my arms throughout the display I thought about all the hopes and dreams I have for him and Aaron, to grow old and marry. It brought back the hope that it might happen for Zach.” Aaron felt special as well as he was able to ride the big rides with the adults (and might I remind you we did not wait in any 45min. long lines!). We were a large party of 11, all family to Zach from both his mom and dad’s sides…all coming together to making a life long memory of Zach having the time of his life. It was so special. Thank you Make-A-Wish and GKTW!!! Pictures to follow soon!



Medical:​



Exactly 1 Year ago today, June 1st 2009, our journey with cancer began. It’s crazy to think about all that has changed/gon​e on in 1 year. I know it’s cliché to say but in some ways it feels like a long time ago and in others the memories of those first 2 weeks are so vivid that it seems like only yesterday.



How is Zach doing? A common question I get almost daily that I will do my best to answer. He is full of new found energy, smiles & laughter and is growing a new head of hair…all of which we are so greatful for! He still has a low immune system which has prevented him from going back to completely normal life; he is very susceptible to illness & b/c he still has his port he has to go the hospital for fevers. He still has his feeding tube in but we hope to get that out very soon; his port will stay in for another 3-6 months to see that there is no evidence of disease recurrence.​ Taking the port out is a lot easier than putting it back in. He is still in physical therephy for walking/bal​ance; he is better but still falls frequently.​ He is progressing in verbal and he has grown 1 inch!!! After our last set of scans in March, the doctors called us back a few weeks later and said they did further research and want to keep looking/tes​ting to see if they find any active cancer cells in Zach’s body. We agreed to keep looking, even though the last scans showed clear, b/c we have learned scans/MRI’s​/even PET scans are not 100% accurate and b/c Zach has an aggressive cancer that comes back after the initial treatment a high percentage of the time. So, we did some CT scans about a month ago (I know I know…I should have posted) to see where, if any blood flow was going into the tumor. Blood flow into the tumor can be an indicator of blood feeding the tumor which is a sign of activity in there. They wanted to see this before they did a biopsy of the tumor. Zach’s tumor in his abdomen is big so the CT will give them a better understandi​ng/accuracy of where to biopsy to check for active cancer cells. The biopsy will not be full proof but it will give us another way to check for activity in the tumor. They will do more scans before the biopsy, the scans are scheduled for Tuesday, June 8th followed by a Doctors appt on June 9th with the results. As long as the scans are unchanged since March, then they will proceed with the biopsy which is a surgery for Zach. We are being so aggressive in continuing to look for active cancers cells b/c of the high rate of return for Zach’s specific type of cancer. During the trip next week they were given tickets to the Rangers Game on Tuesday night from the Starlight Foundation (Thanks!) and they are staying at the Ronald McDonald House in Dallas which continues to be a huge blessing.



Overall, my heart is so grateful for more time with Zach. I cherish each day we have with him. We know the odds of people that relapse with Rhabdomyosa​rcoma, but our Hope is not found in these statistics…​our Hope is found in Jesus..the author and sustainer of life.



I ask for your continues prayers, specificall​y for next week as we move forward with all the testing. Please pray for the doctors, specificall​y the ones reading the scans. Pra​y for our hearts that they are centered on Jesus & Truth. Pray that we would rest in His peace, not in fear of the test results. I’ll be in touch next week. Pray for John and Jennifer and they are struggling with “scanziety” and feeling nervous about next week.