History

Thursday, Novermber 20, 2004 10:13 AM CST

Many of you have asked us about the remaining test results so I thought I would share what little we know with everyone. The bone marrow remains clean. Which we are so happy about. The Bone scan was clean. The MIBG showed one spot which is where the big tumor used to be. This spot is less intense than prior to our treatment in Philly, which indicates to the docs that the treatment had some positive results. There was also a spot on Nick's left adrenal gland on the scans prior to Philly which showed up on the MIBG and some questioned whether or not it was cancer. That spot does not show up on the current MIBG scans.

We sat down with our local doc and the radiologist to discuss the CT scan. They cannot tell from the CT scan what is scar tissue and what is tumor. Nick's CT scan almost looks normal. It is amazing to me what was once a softball sized tumor is now about 0.5 cm in size. Praise God. Ted and I are so thankful for the huge decrease in the size of this tumor. Thanks be to our Awesome God. The Chemo which Nick went through resulted in the reduction of 50% of the tumor and the great surgeon Dr. LaQuaglia removed the rest. We feel that God is in control and he guides our steps. The MIBG treatment in Philadelphia was another step that God led us to and I am sure that it had a positive purpose as well.

What's next? We don't know. We do know that we have to keep fighting. This is a very aggressive cancer that spreads or often returns. We will probably be going back to Philadelphia for another treatment. It didn't have too many short term side effects, but there are risks with this treatment. I believe that if we do go to Philly, it will now be considered a Phase I experimental treatment which means that it is in the category of the most extreme experiments. You are the guinea pig. I don't remember all of the possible side effects that are listed, but it is a radioactive treatment, so whatever goes along with getting too much radiation to your body. It's not a good thing. Leukemia is one possible side effect. More chemotherapy is another possibility but with that comes the risk of liver, kidney, and/or heart failure since Nick has already gone through too much Chemo. We will let you know what path the docs send us on. It is out of our hands.

We were very sad to hear that Nick still has cancer. What we desire more than anything in this world is for our son to well and healthy. We know that there are only so many treatments left before the docs through in the towel. We were too sad to talk for the first couple of days, but we are getting better. We still have hope. My God is not finished. God has given us so many scriptures of hope. Thanks for your many encouraging words as well. Nick is doing great. He feels great. Please keep praying for Nick to be healed and protection to his body from all of these treatments.

Wednesday, December 3 2004 11:14 AM CST

I hope you all had a great Thanksgiving. I wanted to let you all know about Nick's treatment plan. Children's Hospital of Philadelphia just called and asked if we could come for Nick's 2nd MIBG therapy on December 15th. We said sure. We don't want this cancer to have a chance to grow. We should be in Philly from the 14th to the 20th. It will be tricky to work out our schedule. My daughter, Lauren, will turn 7 on the 16th of December. We will need to celebrate her birthday before we go to Philly. We also wanted to spend Christmas in South Carolina. It has been over 2 years since we have been there. Ted's father was also just diagnosed with Prostate Cancer.

We are glad that Nick is eligible to receive more treatment. Pray that this treatment is the last thing that Nick will ever need to rid his body of cancer cells and heal him. Pray that God's hand is on Nick and he protects Nick from the harmful side effects of this treatment. Pray that God heals my son. Pray for our safe travel, we are thinking of driving to both places.

Saturday, Januray 3, 2004 1:03 AM CST

Happy New Year!!! Ted and I were talking on New Years Eve as we watched the fire works downtown and we both agreed that 2003 has been a good year for our family. Maybe not by some standards, but by our standards we have had a very good year.

We have watched our son go through many painful and intolerable things this year: stem cell transplant, radiation, two surgery's to place port access, a life threatening surgery, three other small surgeries, and two intravenous radioactive treatments. But you know what? It's been a good year! I think that Nick would say the same thing. God has delivered us through this year. My son is doing well and getting closer to being cancer free. We have met many new friends who are very giving and loving. My God has given us peace and much joy. I know what it is like to live in the moment and to enjoy simple things. I just want to enjoy a billion more moments with my whole family.

Well I guess I should get to the update part. Philly went very well. Nick did not have any immediate complications to the MIBG therapy besides boredom which caused him to draw a clown face on his own face. It was very cute. Driving across country went very well. We actually enjoyed it. We stopped in DC to take pictures of Nick in front of the White House. Nick wanted to see President Bush and promised to smile while we took a picture of the two of them. We told him that our friends can help us do a lot of things, but I don't think we know anyone who could help us pull that one off. We had a good time in South Carolina for Christmas with Ted's family. Nick got a snow board for Christmas so we will have to plan a ski weekend this spring. We got home the 28th and it's good to be home.

What's next? - Who knows? We have scans in about 4 weeks to check his status. Nick may need more blood transfusions this time and possibly his harvested stem cells may have to be given back to him. The doctors in Philly had a chat with us about the need to continue with some treatment regardless of the scan results. We possibly could go back to Philly for another MIBG therapy or travel to another facility to do a different Phase I clinical trial with chemo agents. It looks like we will have to travel again. We are not finished. I am not going to think about it yet. One day at a time. I will enjoy today and not worry for tomorrow. We will let you know.

Please pray for Nick's continued healing (I never give up on that one). Pray for his protection from general illnesses and long term effects from the MIBG therapy. Pray that his body will not need all the possible blood transfusions and stem cells ( last time he did not need them, but now he has received more radiation). Remember that all things are possible with My God.

Tuesday, February 17, 2004 4:00 PM CST

Thank you for praying for Nick. He had his bone marrow aspirations and biopsy today. The good news is that the bone marrow aspiration showed NO leukemia. We are very relieved about the negative Leukemia results. The bone marrow biopsy will show if there are any Neuroblastoma cells and how many good cells are in his marrow. This information should be available Friday or later. I'll let you know.

We talked with our doc. about the "next step". He is recommending a drug called Fenretinide which is a derivative of Vitamin A. A similar drug called Cis Retnoic acid has been used for years with the NB treatment and really has proven to fight back the cancer. The Fenretinide is experimental We do not know yet if we can get this drug in Oklahoma City. I'll let you know.

Our doctor did say that this is not a curative treatment. Hearing it outloud was hard to take. All treatments up to this point have been done with a possible cure in mind. Now they tell me, there probably isn't a cure for Nick. The docs believe that Nick's tumor has the strong possibility to "wake up" again and spread. We are not surprised by this news. Even though I know it is real possibility that Nick could die from this disease, I can't give up yet. I know that My God is still able to heal Nick if it is in His mighty plan. Please keep praying for Nick's body to be healed from this cancer. Love each day.

Psalms 108:12, 13 - " Oh give us help against the adversary, For deliverance by man is in vain. Through God we shall do valiantly; And it is He who will tread down our adversaries."

Wednesday, March 24, 2004 10:09 AM CST

I wanted to let everyone know our good news. Nick's counts are up!!!!! I have been waiting for several good counts in a row before telling everyone our good news. His platelets were at a low of 14 for a month or longer before gradually coming up. His platelets are now at 98. Wow. That means he can ride his bike now and we no longer have to worry about bleeding problems.

We are really praising God that Nick didn't have to receive his own stem cells back. This is such great news to us because if Nick's disease becomes worse he may be able to enter into other aggressive treatments which require stem cells in reserve. We will keep those precious stem cells in the freezer for now. I pray that Nick will never need those cells back because he will be healed of this cancer by my God.

The doctors still say that it is probable that the disease will spread with vengeance at some point in the future. Only God knows what will happen. I will enjoy Today and pray for the future. Our pastor had a great message last Sunday about prayer and the parable of how the persistent woman kept going back to the judge ( Luke 18: 1-8). Thank you for being my persistent prayer warriors. Thank you for bringing Nick to Jesus' feet daily.

What's next - We are waiting to see if Nick qualifies to be in the Fenretinide study. This is an oral medication that we can stay in Oklahoma and be monitored by the doctors here. Nick will not have to be in the hospital either.

Pray request - Please Praise God for the way that Nick's counts came up. Praise God that Nick's stem cells are still in reserve. Ask God that Nick would qualify for the right medication and God would make that path very clear. Please continue to pray for Nick's healing. I always pray that God would heal Nick and let him live to be an old man and use him in a mighty way.

Saturday, January 2, 2004 8:46 PM CST

Wednesday, October 22, 2003 10:25 PM

Hi Prayer Warriors:
We wanted to give you an update on Nick. Nick's doing great. The surgeons removed the huge catheter from his chest a week ago. Nick was thrilled. The procedure could have been done without anesthesia, but seasoned Nick was quick to ask for 'sleepy medicine'. He knows by now what works best for him.
He plays his last soccer game of the season this Thursday, the 23rd. Boy, does he love soccer. Unfortunately, Nick had to miss a few games at the beginning of the season. This will be only be his third game this fall. In his first game, he scored two goals (this was right after Philadelphia). In the second game, he scored one goal. Bring on the third game!
As far as the cancer goes, we have no idea yet. We keep praying are opitmistic that he received the best birthday present ever in Philadelphia.(He was admitted on his 5th birthday Sep. 22) Keep praying that Nick will be totally healed forever. He will have scans sometime in November to determine the effects of the MIBG therapy in Philly. The treatment kills blood cells, especially platelets. His platelet count has slowly dropped along with his white blood cells, but he is still doing well. We still expect for the counts to drop, but please pray that they rebound quickly and with no long term effects.
Thanks for stopping by to check on us. Thank you in advance for your continued prayers.

Love, Ted, Lydia, Nick, Lauren, and Mitchell

Saturday, October 4, 2003 12:50 AM CDT

I finally decided that Nick needs a web page. It's been over a year since this fight began. I can't believe it. In one way, time has gone slow as I wait for my son to be healed. On the other hand time screams by me at lightning speed.

I hope that this site will help keep others informed of how he is doing and also how they can pray for our family.

We so appreciate all that our friends and family have done for us. It's amazing!!!! We have also had wonderful help from people we have never met before. We are blessed.

Click here to go back to the main page.

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