September 25, 2013

Good Afternoon!

I hope you are all enjoying this beautiful fall weather.  Unfortunately, I am writing today to give you an update on Nathanthat was unexpected.  I just wrote to you on August 22nd after his last scan. 

The past few weeks have been a little crazy in the Leckey family.  Mike has always struggled with a bad back and had surgery on a herniated disc 5 years ago.  Unfortunately, over the past few weeks he has been in unbearable pain. Steroids and strong pain medications were not touching the severe pain, so he saw the surgeon last Monday and ended up in surgery one week ago today.  He herniated the same disc again. He is home and resting, but it will be a slow and difficult recovery.  For Michael's specific case, he will most likely be off of work for 6 weeks.  Michael's busy busy life has now turned into him laying in bed reading Harry Potter and "monitoring" Nathan and I.  We will see how long this lasts...

Since Mike was scheduled for surgery on Thursday last week, we brought Nathan to the hospital to receive his monthly chemotherapy treatment on Wednesday.  I have been noticing a slight decline in some of his symptoms over the past month.  I was hopeful it was nothing to be concerned about, but the oncologist withheld the treatment last week and scheduled an MRI this past Monday.  As we suspected, but did not want to prove, the scan showed growth in both the medulla and the portion growing out of the back of the brainstem. This is the most significant growth we have seen since his surgery last June.  The growth indicates Nathan has built up a resistance to the current standard chemotherapy drugs he has been on for the past year.  At this point, a change in regimen is necessary.

Up until now, we have truly felt that we had a way of controlling Nathan's tumor with standard FDA approved drugs until he was of a safe age to use radiation or other therapies.  We have now learned that is not the case.  There are standard chemotherapy drugs available to Nathan, but the risks to Nathan outweigh the potential benefits at this point.  We need a treatment that will give him the time he needs to grow and safely use radiation. 

Last July, we started the Nathan Leckey Fund to support a Pittsburgh based clinical trial that is being used on low and high grade pediatric glioma tumors.  Since all of the money raised for Nathan's fund has supported this study, we have been following it closely, never thinking this was a road we would have to go down with our son.  At this point, the Peptide Vaccine clinical trial conducted by Nathan's oncologist and surgeon seems to be the most promising option forNathan.  It does not come without risks.  Nathan has an extremely rare tumor, so the sample of children they have used the vaccine on is very small.  Within that small sample, 60% of the children have had either complete responses or have remained stable.  The other 40% either had negative results or the vaccine did not work at all.  One of the greatest risks is rapid swelling of the tumor which we would then have to use steroids for a period of time and hope that it shrinks back or he would have to go through surgery again to resect the operable portion of the tumor.  The main problem with this is that a large portion of Nathan's tumor is inoperable.  There are many other risks, but most children in the study have had very little side effects.  

Nathan will receive his first set of vaccinations tomorrow.  He will go to Children's every three weeks for the next 8 weeks to receive the vaccinations.  He will get his normal blood draws and then receive two shots in his legs.  His symptoms will be monitored closely.  If he has any regression in symptoms, they will scan him immediately.  If not, the next scan will be in three months.

As a parent, you will do anything to help your child and keep them safe.  We have hit a point where the treatments we are giving him have no long term studies, so we have to trust that it is going to safely work.  We know this treatment has the potential to make a significant positive impact on Nathan's tumor, but it also has the potential to do the opposite.  We have to hold on to hope and pray that this experimental option gives Nathan the time he needs to make it to the next step.  

Nathan is a joy to be around.  He is a jokester like his daddy and will do anything to get a laugh.  We have been in many difficult places before with his care and he always manages to make us smile an laugh on a day when we just want to cry.  He will continue to fight and I know you will all continue to pray for him.  The only thing we need right now are your prayers and good wishes for Nathan's next battle.  As Dr. Lindenbaum said to me yesterday, the only thing you think about is recovery...there are no other options.  

Thank you from the bottom of our hearts. You have been and I know will continue to be with us every step of this journey.  It does take a village to raise a child, and you are Nathan's village of angels that pray for him every day.  

Much love,

Mike, Beth, and Nathan