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BILLieve

This site created to keep our loving and supportive friends and family updated as our brave son, Billy, walks through his battle against Stage 3 Lymphoma.

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A true knight is fuller of bravery in the midst, than in the beginning of danger. -- Philip Sidney


FRIDAY, JANUARY 13


INFUSION/ROUND 2

We are back at Lurie Children's by 9am this Friday morning and check in on the 18th floor. Billy is weighed and vitals taken before we are taken back to have his port accessed in preparation for his spinal tap later that morning. We always come prepared for access with a numbing cream on his port, covered with Glad brand Press-N-Seal wrap. It sounds a bit unorthodox, but the nurses swear the Glad Wrap is the best way to keep the port cream in place for the hour ride down to the hospital. They're right. The cream stays in place and the area is numb so Billy doesn't feel the one inch needle puncture the overlying skin for port access. By this point in Billy's treatment I have grown quite comfortable asking the attending nurses how many years they've been doing the procedure because watching someone miss his port more than once is completely unbearable. Today, however, is a good day...his nurse nails it on her first try!!

After Clinic, that includes the access and a lengthy discussion with our doctors/nurses about Billy's last round and the round at hand, Billy undergoes a spinal tap. There are two per round...day one and six in this particular round of treatment. Alas, we are able to inject a bit of fun in these procedures as Billy Boy is taken to his happy place just before the puncture is initiated. He is given, intravenously, two doses of FENTANYL. This is a drug 50 to 100 times more potent than morphine. It's ideal for this type of procedure because of its rapid onset and short duration of action. It's absolutely adorable to watch Billy go from solemn to sunny...moody to merry in a matter of seconds. His expression softens and he slowly smiles at me while he clutches his knees, careful to arch his back and remain motionless for the 4-5 minute procedure. It's quite unforgettable, really, but only lasts a few short minutes.  We don't linger too long today because Andrew and Johnny have come to the hospital to meet us.  They expected we'd have time to grab a bite for lunch before a bed became available for Billy's five night stay. We did,  so we headed to the cafeteria on 11.  After lunch Billy's room (#1708) was ready and we were settled by 1pm.

This round began, as did round 1, with a six hour infusion of Rituximab. It's followed by Vincristine and Methotrexate, both strong meds that need to be flushed out of Billy's system all through the night. We don't get much sleep. The following morning Billy sleeps until 11am and brother Peter comes to visit. They visit most of the day while different meds are either pushed into Billy's port or hung on his IV pole to drip over several hours. By late afternoon Billy is somewhat nauseous, ever-apparent when he's unable to even LOOK at the Chick-fil-A he asked to have for dinner. I end up walking to McDonald's at 11pm to get him a strawberry sundae as it seems to be the only thing he can imagine eating that night. Sunday morning brings more meds and several blood draws. Doctors test his levels often to see how fast and exactly when his body will be clear of the methotrexate (administered day 1). This piece is important because it will determine the day Billy will be discharged, normally 48 hours post clearing. That night we receive great news...he's cleared and will definitely be able to go home Tuesday afternoon. We are thrilled. We find it such a boost to the morale to have an exact date/time to look forward to being home again.

MONDAY, JANUARY 16  

Treatment continues. Billy's appetite is somewhat off and he is unable to eat most of the day. I'm journaling when, around 10:30pm, he looks up from his computer and asks me for pizza. Now we both know the cafeteria closed at 7,  but I don't have the heart to tell my boy that he can't have whatever his hungry heart desires. We ask Siri where we can get a pizza nearby at that hour. Her answer...Pizano's .6miles away. THAT....I can do, I tell him, and we order a medium pepperoni (only because they don't OFFER a small)! So there I am, 11 o'clock at night, walking to and fro Pizano's for a hot and delicious pizza for my Billy. I must confess it felt so good to be out in the fresh air, even considering the late hour. I had been inside the hospital, by this point, for four days (aside from the McDonald's run) and I welcomed a chance to get outside and get some steps in. I also LOVED the look on Billy's face when I pushed through his hospital room door and could sit and watch him enjoy something so simple as a pepperoni pizza. Full tummies, however, often times aren't tired tummies and unfortunately sleep did not come until well after 1:30 am. I was hopeful he would sleep in as all we had the next day was to prepare to go home :)

TUESDAY, JANUARY 17

Indeed, on this day we head home. I spend the morning packing up our room and Billy Boy gets the last piece of his in-patient treatment...NEULASTA. This is always administered just before discharge in the form of a shot because it's a drug that stimulates bone marrow to produce white blood cells. In other words it aids the body in rebuilding what the chemotherapy meds depleted. We learned in round 1 that it is a very important piece of Billy's recovery so we were stunned to find out that insurance companies don't cover it. Each shot in the dosage Billy requires runs $2800 and Billy will need four in all.  Thankfully, we know the cost for Billy's Neulasta will not be our out-of-pocket burden because there is a silent donor connected to Lurie's that covers up to $10,000 per child.  We found this incredible...a silent donor. So heartwarming to know there is someone out there willing to make such a donation, again and again, for patients like Billy.  It's gestures like these that inspire us, as a family, to come up with a way to pay it forward one fine day.

Around NOON Andrew pulls up in his classic orange AEROSTAR minivan (circa 1986) and Billy Boy hops into the front seat. That leaves the cargo area for me and all of our bags...which suits me just fine as Andrew has it decorated with curtains and a cozy futon...along with plenty of artwork on the walls/ceiling to keep my tired eyes occupied. We are home in no time and, before I know it, Billy Boy is binge-watching The Office (hilarious) with Peter and Andrew. He asks me to try and make Benihana's onion soup so I look up a hack, head to the store, and manage to make a pretty good version for a late lunch. After seven hours of The Office and some dinner Peter and Andrew take Billy for ice cream at Baskin Robbins. Yes, it was 11pm when they decided to do this, but I thought it would make for a good memory for round two's homecoming...and we're all about finding the good ANY time...ANYwhere, as you can well imagine.

WEDNESDAY, JANUARY 18

We head to Lurie, once again, but this time for an out-patient spinal tap. We have our favorite nurse for the procedure and all goes off without a hitch!  Billy leaves the hospital in great spirits and naps for two hours upon arriving home. When he awakes Peter and I take him to Elly's (a family fave) for lunch and then Peter decides they need to hit PetSmart for ANOTHER, larger goldfish. Off they go...returning with a HUGE one that we name O.P. for OverPower. I like it!

The next fifteen days involved recovery at home. This recovery was FAR better than the first because we didn't have any hiccups. Remember in round one's recovery we had the midnight run to the ER for a fever/chest XRay and a trip to Lurie's for a belly scan/constipation management. This recovery seemed like a walk in the park in comparison. His nurse came on Mondays and Thursdays for blood draws and the results were always good. Billy even felt good enough to go to school on three occasions for a few hours each time. He was so excited to see his teachers and friends. I thought it was so courageous of him to take off his ski cap when his head became too warm. He proudly walked the halls amongst his friends and everyone was so supportive. It was SUCH a great addition to his recovery to get him to spend some time at school. It wasn't so much about the academics as it was the idea of doing something normal...something that reminded him he was still just a 14 year old boy in middle school. Made him happy...made me ecstatic. Another piece of this recovery was a visit from Auntie Kimmie from California...she always injects some merriment in the house and good times...arriving with arms filled with gifts galore!!  Yet another high point in recovery was celebrating Andrew's 25th birthday on January 22 at our favorite local restaurant, Wildfire. I think we all ate like we were headed straight to the electric chair afterward. It was so wonderful to be out all together again, laughing and celebrating...the energy was happy and hopeful and I found myself not wanting the night to end!

All in all round two went incredibly well, considering it looked (meds-wise) exactly like Billy's first round. I think knowing what to expect helped make things a bit less stressful, as did Billy's continued courage!  I also realized something as we headed into round three...it was a feeling...and it began to take hold of me with each passing day...it was the conviction that, yes, 'this too will pass.'  I was so thankful to be feeling so much hope...I would cling to it knowing round 3 would soon reveal everything we needed to know in terms of Billy's prognosis.  

Thank you for visiting...next up...ROUND 3/February 3

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