July 27, 8018 

Good morning!

I hope you are all enjoying your summer!!  It is hard to believe August is right around the corner and school will be here soon.  Time is going way too fast!  Nathan will be in first grade and I am not even close to ready to send him to all day school!!  We know Nathan has been in your thoughts and prayers and I wanted to give you an update on what has been happening the past three months since he started the clinical trial.

We got home yesterday from another long week in Boston.  Nathan had to go through the same series of exams that he did before we started the trial.  It was three days of seeing countless doctors, nurses, procedures, pokes, and exams.  This was probably the hardest time on him so far because his body is weak and everything is a challenge right now.  When you are tired, the last thing you want is people poking at your body all day long.  He always rallies and does what he needs to do, but this was a really hard week.  Mike and I did our best to stay positive and keep him happy and busy, but our hearts were heavy as we watched our son endure so much. 

On Wednesday, he had his first three month MRI to show the progress of the tumor since the trial started on May 3rd.  We were please to see the tumor is slightly smaller since beginning therapy!!  This is extremely encouraging news because Nathan has had a great deal of side effects and it was impossible to tell if it was being caused by the drug or the tumor.  We will not know for another three to six months if the therapy is truly effective because it takes time to build up in the system.  This is a drug that does not seem to show false results or rapid changes. If it outsmarts the tumor and we see smaller measurements on the scans then it is most likely killing the tumor cells little by little.  Nathan’s tumor is in such a small critical space of the brain stem, so any small change is a win!   

In June, six weeks after Nathan started the therapy he was hospitalized for drug toxicity.  We were not sure at the time what was causing the issues, but we now know the drug is extremely hard on Nathan’s little system.  He lost his ability to hold up his body, has had significant GI issues, bad skin toxicity that has caused rashes and nail infections, extreme fatigue, and mood and personality changes.  He had to come off the therapy for 10 days.  At that time, we saw everything improve.  After restarting the drug, everything came back.  Until this week, we did not know if the drug was working so we needed to keep him at the highest dose because that is the only dose that has proven results.  He is unable to continue on the highest dose, so we reduced it and hope that it will continue to attack the tumor and make things easier on Nathan’s body.  He will not be able to remain on the drug if some of these symptoms do not resolve.  Over the next three months we will work to find the optimal dose. 

Nathan is fighting really hard to continue with his day and do the things he loves to do.  We have learned how to make things easier on him and still enjoy the day.  He is frustrated and knows exactly what is going on now.  He is older and wiser which is good and bad.  We are so incredibly grateful to have Sean and Samuel who keep Nathan active and happy.  They all love each other so much and are happy to be together.  

Although the past three months have been some of the hardest times in our lives, we know we have an army of people helping us through it.  We have the greatest family and friends in the world that make sure Samuel and Sean are being taken care of while we have had to do so much with Nathan.  Samuel is incredible with Nathan.  He instinctively knows Nathan is not his best right now and helps him do the things that are hard on him. Although, he does set his boundaries.  When Nathan asks too much Samuel has now started to reply with, “I am not your assistant.  I am Samuel, AKA Boss Baby.”  Nathan then snickers and says, “He figured me out again mom.” As I am writing this, they are at the table hugging and telling jokes.  Thank God for brothers!

Thank you for your emails, cards, phone calls, and texts of love and support.  We will continue to take things one day at a time and be grateful for each healthy day and each win.  This week was hard, but it was definitely a WIN!

Sending love and hugs to all of you!!

Mike, Beth, Nathan, Samuel, and Sean

               

Ready for the flight to Boston with Icy and Pierre!             These two just keep going and going!

Not so happy waiting at the ophthalmologist instead of playing with the cousins!

May 17, 2018

Nathan completed his second cycle today.  He was a total champ.  He was patient with the nurses during the pokes and helped them with all the blood draws.  We have met the sweetest nurses here.  They are great with Nathan and walk him through everything step by step.  They answer his ten thousand questions and teach him the process so he is not scared.  So far, everything is going pretty smoothly.  Nathan and I enjoyed time together playing, reading, writing comics, and building legos.  It's amazing how much you can get done when you have the day to just play.

Thank you for your continued thoughts and prayers.  We are doing our best to just take things day by day and not get overwhelmed by the big picture.  Some days are definitely easier than others, but Nathan pushes himself every day to just keep on going, so we will do the same.

We will come home tomorrow for a week and then come back again at the end of the month.  So far....so good!!

                   We found our spot and built T-Rex       Nathan knows the airport routine better than I do.

                             Boston, here we come!                             Second long day complete!!
                                                                                                    Everything went well.

5/6/18

On Friday, Nathan completed his last round of blood work and received his medication.  Everything went as planned throughout the week and we are all set.  We flew home yesterday and are now getting settled in.  Nathan has been incredible with taking his medication when asked and following all the steps just like the doctor instructed.  We were very nervous about how Nathan would handle so many new faces and places this week, but he got through it.  Friday was another challenge, but little by little he is getting used to everything.

He will continue to receive his treatments twice a day at home and we will return to Boston in two weeks to have an all day blood monitoring and administration of the medication. There is a team of about 8 doctors and nurses looking over everything going on, so we know Nathan is in good hands.

We can not thank you enough for all of the emails, text messages, phone calls, cards, and prayers that have been shared with us this week.  We were truly overwhelmed with the amount of love and support that was given to us throughout the week.  Although I may not have a chance to respond right away, Mike and I read every email and text and it helps us to get through the long days. THANK YOU!  We are truly blessed with incredible friends and family who always take the time to let us know they care.  Our Boston family made every second we were not at the hospital fun for the boys.  It was great to be surrounded by family while we were going through all of this. We know that we have friends and family who are walking each step of the way with us and caring for us so we can do our best to make sure Nathan is healthy.  We are blessed!

We will do everything in our power to make sure Nathan is happy through this whole process.  He is doing his job perfectly so far and I know you will all walk beside us as he once again steps up and fights with everything he has to beat this.  God is listening and hearing our prayers.

Love,
Mike, Beth, Nathan, Samuel, and Sean

P.S. I think Dottie is ready for a nap!!  She was very busy all week.

We need to bring more Pittsburgh gear next trip!

Samuel was amazing all week holding Nathan's hand. He supported him every step of the way. 

Nathan was so happy to have Dottie, his class friend, for the week.  She had to go everywhere with us!

May 3,

Everything has gone as planned and Nathan was able to receive his first dose of medication.  Due to this being a clinical trial, everything is very controlled and there is a great deal of information.  We have talked to Nathan about what was going to happen today so he was ready to go.  He was so brave with all the pokes, blood draws, and taking the new medication.  We spent all day at Dana Farber, but Nathan was happy as can be.  He turned the corner today and realized this is just part of his job now.  We spent time building legos and having fun between blood draws  The people at Dana Farber were absolutely incredible with all of us.  We are grateful to have this amazing hospital.

Our spot for the day.

Trying to take a little rest with Dottie. He said she was really tired. 

Nothing better than building legos with no distractions! It was the perfect activity for these long days. 

Checklist complete!  Nathan was so excited to put his stars on the chart and keep track of the day. 

May 2

We are 1/2 way done with the first week.  We were able to spent some free time this morning at the Children's museum before we had to head in to the appointments.  Nathan is taking things one step at a time and learning what his new routine is going to be.   We were even able to catch his cousin's baseball game tonight!  We made our Pittsburgh pride known in this Red Sox town!

Absolutely gorgeous day in Boston

Sam has been a total trooper

Fun times at the Children's Museum 

A cookie bouquet from his Pittsburgh friends!  

May 1

Nathan did a great job today.  It was a hard day getting used to a new setting for the MRI, but he came through very well.  The staff at Boston Children's was amazing!  Samuel and Nathan were happy to be together.  Nathan was brave and checked off the 6 of 8 appointments for the week.  Dottie is very busy every day!

I can do this mom

Keeping busy with dad while we wait

Mr. smile maker made the day better

Dotty was waiting in recovery.  All done and ready to go home. 

Samuel wanted to help Nay Nay

April 30

Today was a busy day of appointments, but everything went well.  Nathan is learning the how to navigate his way through Boston Children's Hospital.  We met his new neuro oncologist, Dr. Chi.  He also met his ophthalmologist and had an EKG.  He though it was kind of fun to have all those wires on him.  He is so used to everything in Pittsburgh, so this has been a big transition for him.  Dottie came along to all the appointments which made the day fun.

Day 1 of getting ready to start the trial

Dottie at the Jimmy Fund Clinic

Dottie has his first eye appointment