*This update written by Jennifer* 

Wow.  Has it really been 4 months since we have posted an update?
    It seems those few months were harder physically on Jay, and emotionally on us than the earlier months of this diagnosis. One would think that 9 months into this journey that it would get easier.

No. We hit a point of being worn down and in complete survival mode.  Literally and metaphorically.
Matt was teaching full time, and I was in the swing of working evenings and weekends at my practice so I could take Jay to medical appointments. 

He was hospitalized again for several days in March, as he was neutropenic. This occurred because of months of chemotherapy building up and wrecking his immune system. 

 3 hospitalizations from January to the end of March, being a very difficult time for us.

He ended his Delayed Intensification phase at the end of March and transitioned into the Maintenance Phase of treatment. The first 3 months of this phase, Jay had difficulty stabilizing his labs, primarily his ANC (low white blood cell neutrophil counts).

This phase will go in cycles for the next 2 1/2 years. 

Jay will continue taking oral chemo Mercaptopurine every day at home and Methotrexate at home once per week. He will go through cycles every 6-8 weeks of steroids and continue going to clinic in Hershey 1-2 times per month for chemo infusions (other drugs) through his chest port, and intrathecally through his spine. He will continue with weekly labs and spinal taps.  Weekly labs results inform the oncologist if Jay's oral chemo should be increased or decreased. It's a fine balance to keep the leukemia cells suppressed enough to prevent recurrence, while not depleting his immune system.   (When that happens, he has to stop chemo for a few weeks for his bone marrow to recover. This places him at higher risk for relapse, which changes prognosis)

In April, right before Easter, he did get the green light to attend school. He went for 1/2 day.  Then his ANC plummeted again, making him immunosuppressed. He returned home and took a 3 week break from chemo.

He never made it back to school in person this year.  He did, however, continue to grind through his honors classes with straight A's. I wish I could report that was a breeze for him. It was during the first part of the school year, but became more difficult to sustain motivation. He essentially had to teach himself AND do the work at home. His sleep, eating, and feeling sick is sporadic and unpredictable. So motivation for schoolwork did become more difficult. But he still did it.

He also received the Central York High School, Character Award.  In Jay's humor, and discomfort, he did not think he deserved that and thinks it is a "pity award" for having cancer.  We explain to him that getting straight As in honors classes, where he had to teach himself material, is quite an accomplishment alone. Add to that, literally fighting for his life this whole past year, and he truly is quite extraordinary.

He and Kirsten celebrated their one year anniversary on April 12th.  In high school dog years, that's like a 10 year relationship!  They wanted to go to the Baltimore Aquarium and eat at Cheesecake Factory. Unfortunately, Jay ended up in the hospital Easter night, and stayed for about a week. His immune system was too weak for awhile to go anywhere crowded after that.

He has experienced severe bouts of pain beyond what the average adult could handle, constant nausea and vomiting many times every day.  We are still looking for remedies to help with the nausea and vomiting, as this will be the next 2+years.

I spent 3 weeks gone in May; to a professional training and hang gliding in the Outer Banks.   During my time away, Jay's hair got thicker and longer. (he has a full head of hair again!) He also started cooking and experimenting with recipes, becoming quite the chef! One of my favorites things he makes is a copycat recipe of the Wild West Shrimp from Longhorn. He and Kirsten have been enjoying cooking together.

Jay has a little more energy, despite his constant pain, nausea, and vomiting. He has been getting back into the weight room of our basement and doing a bit more physical activity. It's hard for him as his hemoglobin level, though cancer stable, is still very low for the average person. This means his red blood cells carry much less oxygen to his muscles and organs and he fatigues more quickly.

The Make a Wish Foundation has been in contact with us. The team made a visit to our home in June to discuss Jay's wish. After a few rounds of Mr. Pragmatic......Jay has decided he wants to got to New York City, visit the U.N. Building, 9/11 Memorial, and then eat at the top 5 pizza places in NYC.  AND not have to wait.  So, a pizza tour in NYC.  Thank you, to all donors to Make a Wish!   You will make Jay a very happy pizza kid!

Today Jay turned 16. It was emotional and bittersweet realizing how fast the years go by and all the unpredictable things that happen. A parent's primary goal is to protect and nurture their child. This last year has been paralyzing at times, realizing that so much is out of our control. That I couldn't protect him from this cancer. That we are prisoners to an unknown outcome. Every parent's worst nightmare, is feeling helpless while your child suffers.

Jay's due date was 07/07/07

Slot machine jackpot! (he incubated 3 days longer)

On the way to the hospital on July 9th, 2007-  I demanded that we stop at Cracker Barrel to eat. I was hugely pregnant and having contractions, yet I was determined for those biscuits and hashbrown casserole. The server said, "When are you due?"   I replied, "2 days ago and I am in labor right now."   She looked quite nervous😝  It was fitting today, that Jay asked to go to Cracker Barrel for breakfast.  I ordered the same thing today as I did 16 years ago.  Matt and I also brought a portable DVD player to the hospital. [no streaming  like now back then]   We owned the DVD for season 5 of 24.   So we watched it in the hospital as I suffered through 20 more hours of labor.  Well, Jay has been into binge watching 24 the past few months. He managed to finish all 8 seasons.  We do have frequent discussions about how ridiculous that show is.   So eitherJay was steering the Cracker Barrel and 24 in utero, or it imprinted on him.  😜

Kirsten set up a scavenger hunt and had a lot of candy and gifts for him. I made banana bread (which he asks for every year) and he ate at a favorite restaurant. He and Kirsten took a mile walk on a nature trail. For him to survive everything he has over the past 13 months and to do so with such a great attitude and humor is incredible. Even knowing he still has 2 1/2 years of this treatment left.  So this is far from over.

Jay has been forced to grow up quite a bit this past year. I have also been forced to grow and stretch beyond what I could have imagined.

I watch him in awe as he continues to develop into this amazing young adult. Matt and I are lucky to be his parents.

Thank you for all the continued love and support through this ultramarathon!