February 28, 2014

Good afternoon!

Five weeks ago, my husband emailed all of you to give you an update on Nathan and ask for your daily prayers during this critical time in Nathan's treatment.  After 5 vaccine injections, we learned the tumor had grown more than 25% since we started the vaccine clinical trial and Nathan was showing neurological decline.  Those two criteria required us to stop the vaccine study for five weeks to see if the tumor was swelling due to a reaction from the vaccine or if it was truly growing.  

Yesterday, Nathan had his follow up MRI and the results showed the tumor was the same as it was five weeks ago.  Although the tumor has not shrunk, his neurological symptoms have slightly improved which made our oncologists believe what she is seeing on the scan may still be tumor "swelling" and not true "growth." Five weeks may not be enough time to see the swelling go down without the aid of steroids, so we are going to continue on the vaccine clinical trial for two more injections and then scan again in 6 weeks.  At this point, our doctor is treating the child, not the image because images can be deceiving.  We are grateful for her experience and sensitivity to each child because there is no standard answer to a case like Nathan's.

One of the first things we were told when we entered Nathan in the study is they often see things get worse before they get better with this study.  They have seen results that have completely cured children's tumors, but few of those cases came without complications. Nathan received injection #6 yesterday.  The next two injections are at the most critical time in the study.  If a child makes it to injection #8, they go into what they call a "maintenance period."  At that point, the children are stable and the body is having a positive immune response.  

We are going on six months of Nathan being chemo free.  Our chemo nurse just said to me this morning, "Every hope and prayer of a parent who has a child with cancer is to cure their child without using chemo or radiation."  We were finally able to take a deep breath yesterday when our oncologist gave us the news.  We get to go another 6 weeks of being chemo free.  One of the main reasons we started the Nathan Leckey Fund, was to support this amazing immunotherapy right here in Pittsburgh.  The thoughts that it could work on Nathan never crossed our minds.  Yesterday was the first time we were able to see a glimmer of hope that this might be the answer for Nathan.  

Nathan's body has a lot of work to do over the next 6 weeks.  He is fighting through the vaccine today and his body is showing signs that it is reacting to the injections.  In Mike's last email he asked each and every one of you to take a few minutes out of every day to pray for our Nathan.  We are absolutely certain that God is hearing our prayers and answering each one of us or we would have been starting another treatment course yesterday.  Today, I ask that same request but I have learned from all of you to be very specific in my prayers to God. Every night when I put Nathan to bed, I hold the back of his head and ask God to let Nathan's body accept the vaccine and heal him from the inside out.  If all of ask for the same thing, God will hear us and answer our prayers in six weeks.

Over the past several weeks we have received a tremendous amount of inspirational support from you.  Your cards, emails, daily devotionals, mass enrollments, and phone calls have carried us through a challenging time.  The next six weeks will be difficult, but you have given us the strength to get through this.  

We love you all and are grateful to have you in our lives.

Love,

Mike, Beth, and Nathan 

Two happy boys after getting some hopeful news!

February 5, 2014

Today was another long day at the hospital for Nathan.  Nathan had a mediport placed in his right chest on December 10, 2012.  They placed it when he started weekly chemo treatments.  Although it was the last thing we wanted him to have at the time, it has been a true blessing.  We are able to numb the area and every time he needs blood drawn or a chemo administered, they can go through the port and Nathan does not have to get an IV.

The port is a direct line to the heart, so it does not come without significant risk.  We have been very lucky for over a year, but the past few months the port has looked very red and puffy with drainage, so they have not been able to use it.  After two ER visits in two weeks and countless consultations on what to do, Nathan ended up in Surgery yesterday to remove the port.  That was the right decision because it was badly infected.  The surgery lasted about 1 1/2 hours and then he was in recovery for another 3 hours.  Unfortunately, they were not able to place another port because the risk of infection is too high and the same thing could happen to the new port.  We will have to do a second surgery to place a new port.  The infection was so bad that they were not able to close the wound.  It is packed with gauze and a nurse will come for the next 6 days to take care of the wound to minimize infection.  Nathan has to have limited activity for 10-12 days while his body slowly heals.

We started at 8am in the clinic and got home around 5, but Nathan was a CHAMP!!!  He was pleasant and very patient all day.  They medications seemed to have effected him more than usual because the entire time we were in recovery he just wanted to lay in my arms and relax.  He reminded us several times that "rest is best" when you are sick...thank God for the lessons learned in Daniel Tiger's Neighborhood!  After we got some fluids in him and he started to become more alert, he looked up and said, "veggie puffs and dippy dip daddy Michael." It was like he was a mature adult laying in bed making his requests.  It was actually quite comical.  He is quickly learning the routine because his next request was M&M's.

Nathan was just under general anesthesia two weeks ago and will have to go under again in three weeks for his next MRI.  Three times in 5 weeks for a two year old just doesn't seem right, but he never complains or fusses.   It is not easy and we certainly see our share of tears, but Nathan has learned this is what he does...that is what breaks our hearts.   This is part of his life and he has accepted it much better than we have at times.  I would give anything to make these days go away and Nathan does EVERYTHING to make our family enjoy each day no matter where we are.  He never loses his spirit, his sense of humor, or his smile.  This little guy teaches more about life in one day than we could have ever imagined.

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Waiting in the oncology clinic at 8:30am. 

Cruising the halls in their brand new truck before going into surgery.