May 19, 2014

Nathan received his first round of Avastin today.  He was a total champ if I must say.  One of the biggest obstacles was that he had get an IV to get the chemo.  We practiced with his doctors kit all weekend so he knew what to expect.  He likes to look for veins on mom and dad and use his special light.  We always have to get a mickey band aid at the end. He was anxious with everything new that was happening and kept saying, "Not for me," but he did really well.  They were able to place the IV fairly quickly which helped.  He also wore his IV sock so he didn't have to look at it.  Nathan just knows when he has to be patient and adjust.  The infusion took about 2 1/2 hours and Nathan was a total angel.  He sat and ate his lunch, played his puzzles with pap, colored, and watched his iPad.  He watches every little move the nurses make, but takes it all in and once he knows he safe he says, "thank you" to the nurses.  I was really proud of my little man today.  He was much stronger than his mommy!  We hope and pray we are able to continue getting veins easily and we can avoid the PICC line which would be very limiting for Nathan.

Nathan is weak right now and his symptoms are worse than we have seen in a very long time.  Nathan needs help and needs to get better.  We are hopeful that this chemo will help Nathan and do so quickly.  He is fighting through the side effects and working hard to be a happy little boy!

Thank you for your constant thoughts and prayers.  As always, you helped us get through a difficult week.

Nathan's special Steeler's sock to cover his IV

First infusion of Avastin.  Nathan did great!

May 12, 2014

Good Evening,

 

I hope this email finds you well.  It is wonderful to see the green grass and blooming trees of spring.  It has been so nice to see Nathan enjoying being outside and running around like a crazy little 2 year old boy.  Nathan and I even went to Boston to visit my brother and his family.  It was so nice to be in a wonderful city with his cousins and explore museums and parks like a normal healthy little boy should.

Today Nathan had another follow up MRI to monitor his progress on the vaccine trial.  His last scan on April 10th showed questionable enhancement in an area deep within the brainstem. It is a critical part of the brain that controls breathing and swallowing.  After a break from the vaccine combined with several weeks of steroids, the hope was that we would see a change on the scan that would give us an indication that the vaccine was having a positive effect on Nathan's tumor.

The scan today showed the tumor to be stable from 5 weeks ago.  In the past, we would be ok with stability, but unfortunately not with this scan and this point in the vaccine treatment.  There is not enough concrete information to let us proceed on the vaccine without taking a significant risk of doing damage that is nonreversible.  As the doctor said today, a little growth could mean surgery, a shunt, use of early radiation, increased difficulty swallowing and breathing, and increased left-sided weakness.  These are not risks that are safe to take.

Every ounce of us wanted this vaccine to work because it has such great promise.  So many of you have supported not only Nathan's participation in this trial, but every child who has been enrolled.  Your generous donations over the past two years helped Nathan's Fund that directly supports the vaccine trial reach over $54,000 this month.  The vaccine gave Nathan almost 8 months off chemotherapy. We are hopeful that the vaccine effect will have a positive impact on his next course of treatment as they have seen with other vaccine patients.  We are still unsure if the vaccine worked for Nathan.  Only time and continued research will tell. 

After 7 hours of waiting, getting an MRI, and recovering, we spent over an hour with three physicians and two nurses to come to an agreement on the next course of treatment for Nathan.  We will be starting a chemotherapy drug called Avastin.  Nathan's tumor is stubborn and we have yet to find a treatment to give him the stability he needs to grow older and avoid radiation at a young age or even at all.  This chemo comes with significant risks that we have not had to face in the past. Unfortunately, he is not able to have another mediport placed, so we will have to get IV's placed every two weeks which is not an easy task in a little one.  If that does not work, we will have to place a PICC line which is a more permanent IV, but he can not get it wet which means no swimming or beach for Nathan this summer.  Please pray that we can easily place the IV's so we can avoid having to use the PICC line and Nathan can enjoy the pool this summer with all the other kids. 

Today was extremely difficult because we are slowly exhausting options for Nathan and he is only becoming more aware.  We now hear him say, "I don't want to go to the hospital," or "please don't hurt me," when he goes into a room.  It is devastating to watch him fight so hard and remain a happy little boy, but to see the image of this large tumor in his tiny little brain.  We met some wonderful families today who have been through our journey and continue to walk this scary path with their children.  They reminded us that our kids need our patience and strength to feel safe and secure while they go through painful days of strangers poking and prodding them.  

Today the wind was taken from our sails yet again, but Nathan doesn't let up for even a minute.  He was running around the house like a crazy man tonight making us laugh with his funny one-liners - "Nathan is on the loose."  Tomorrow is a new day and we will wake up accepting what we all have to face next.  Although we don't have many options left, we do have options and Nathan is a fighter.  

 

As we prepare to bring our new little one into the world, days like today remind us to be thankful for the many blessings God has given us.  Through all of your love and strength you give us what we need to tackle this new challenge. We will sacrifice everything and always put him first to make sure Nathan feels secure and loved. That is all we can give him right now.  As much as we want to take time to regroup and recharge, Nathan never stops fighting, so we will be with him every step of the way.

 

Thank you for the faithful love, support, and friendship you give us every day.

Love,

Mike, Beth, Nathan, and Baby Leckey