The Long, Hot Summer

Last night Henry made this sunny Pineapple Upside Down Cake pretty much by himself. It seems a happy way to close the very tumultuous chapter of the last few weeks.

We drove to Duke on Monday, June 23. At this point, Henry was having trouble getting around. He could walk, but had to support himself at every step. We had a rather brief meeting with Dr. G, and learned that getting approval for lenalidomide (aka Revlamid, the thalidomide derivative) was more complicated than we thought, and could take over a month. Dr. G gave us prescriptions for Temodar, Etopiside, and Tamoxifen, and told us to start those if the Revlimid approval took more than a couple of weeks. He also put Henry on Celebrex, which is more compatible with the new drugs than the ibuprofen he had been taking.

Back home, Henry started feeling a little a little better by the end of the week. His new drug regimen includes the Celebrex (non-steroid anti-inflamitory), dexamethazone (steroid anti-inflammatory), Prevacid (to prevent stomach distress from dexamethazone), Morphine Sulfate ER (extended release Morphine for pain), and Colace (to counteract steroid-induced constipation). We (including his doctors) all felt comfortable sending him to camp the next week [June 29 through July 5]. This is a sleepover camp provided by Camp Happy Days, the same wonderful organization that sponsored he Orlando trip last February.

Although Mama and Dad were nervous wrecks, Henry was very excited to go and we knew that he would be in good hands. There are oncologists and oncology nurses on site, and the counselors have plenty of expertise in creating a memorable experience for all the campers, regardless of their condition. We drove him to Charleston, where the bus eventually arrived to drive the campers about an hour North to the campsite.

Mama and Dad made the drive home from Charleston, and about two hours later, got a call from Henry on the cell phone. He was crying, but he reception was terrible and kept cutting out; we could not understand a word. We told him to call back on our land line, but he called back on the other cell phone: no signal at all! Desperately, we called every number we had for directors and counselors, but only reached voice mail. As we were looking up directions to the campsite, preparing to drive the three hours to rescue him from who-knows-what, we got a call. His camp counselor found the one spot - outside, away from trees, by the motor pool - with cell phone reception. By this time, Henry had calmed down, and explained that he had gotten upset and embarrassed following an activity, but that everything was all right now. He did not want to be picked up - he wanted to stay at camp.

When we spoke to him the next day, he revealed that he was feeling numb from the waist down, and that he was having trouble controlling his bladder. We had him see the camp oncologist, and after consulting with Dr. G, we increased his dose of dexamethazone to reduce inflammation on the spinal nerves. We also spoke to Dr. G2, the neurosurgeon at Duke, who called the bladder condition "stress incontinence," common in this situation, and offered a prescription that could help.

By mid-week, we learned that we were approved for the Revlimid. Mama was thoroughly de-briefed by a pharmacist (mostly to make sure that the drug doesn't come anywhere near a mother-to-be) and we learned that it could take a month or two before any results may be observed. The drug was shipped and it arrived Thursday, July 3.

Meanwhile, Henry was having a blast at camp. There were the requisite outdoor activities, crafts and woodshop. They had movies, a prom and fireworks on the 4th of July. Henry even went para sailing! He had a very, very good time.

We picked him up on Saturday [July 5] and started the Revlimid that night.

Through the course of the next week, Henry had more difficulty walking, and pretty much needed the wheelchair to get around. By mid week, he had some swelling in the lower extremities, and was feeling very tired.

By this time, Henry was having so many changes in his condition and was on so much medication that we couldn't tell what was a symptom of disease or a medicinal side effect (Revlimid, for instance, causes fatigue and leg swelling, with the possibility of blood clots and thrombosis; dexamethazone caused water retention and bloating). After conferring with Dr. G, we went to Savannah to have him examined. If there were no blood clots, there is (yet another) medication that could reduce fluid retention. It was determined that the swelling was an expected reaction to the dex, and Dr. J thought in was too minor to medicate. We also addressed Henry's ongoing constipation, and added a Sennacot to the Colace regimen.

The next weekend had a welcome visit from Aunt L and Uncle B. It was great to see them and gave a much-needed morale boost to us all.

As the following week wore on, Henry could no longer stand on his own and began suffering morning bouts of nausea despite his regular dose of Zofran. We were really conscious of the fact that he his constipation had become chronic, and by Thursday [July 17] he was throwing up something quite foul. Several phone calls (to several doctors) later, we elected to admit Henry to the hospital to be treated by a pediatric GI specialist. Indeed, Henry had a huge blockage (described as the size of "an icebox watermelon"), and it took three days of enemas, electrolyte drips and digital removal to clear him out. Henry showed his usual pluck and determination in dealing with sometimes embarrassing procedures and the toll of getting on the porta-john three or four times throughout the night.

We were released on Sunday [July 20] and Henry felt so much better. However, his lower-body control and mobility were not improving. We looked forward to a visit from Aunt S, Uncle S and Cousin P the next weekend.

During the next week we were dealing with an administration snag with refilling the Revlimid (the therapy calls for three weeks on and one week off). It takes time to ship out and before a prescription can be filled both physician and patient must complete voice mail surveys, but you can't take the survey until each three-week prescription is complete. While sorting this out with the administrative assistant at Duke, Dr. G got on the phone and asked about Henry. After hearing about his reduced feeling and mobility he suggested we immediately get an MRI of his spine. As it happens, Revlimid only works on very small tumors. If Henry's tumors have grown much in the intervening weeks, they may be too large for the Revlimid to be effective. If that proves true we have to switch to yet another treatment.

The earliest and best time to schedule the MRI was 7 pm on Friday night [July 25] in Savannah. Aunt S, Uncle S and Cousin P were scheduled to come visit Friday night, so we all met up at the hospital. After the MRI we dined at The Pirates' House and we all finished a fun weekend with some good food and Henry's new Rock Band video game for the wii. Meanwhile, we won't know the MRI results until Monday.

Now is a good time to emphatically mention how grateful we are to everyone who has been sending such good wishes and support though all this. Our families are the absolute best: always by our sides with warmth, concern and pleasant surprises. We have the finest friends in the world, who offer everything in the way of help and assistance. We have found many friends, past associates and medical caregivers who have found this blog and write the most heartfelt offerings that mean so much to us. We have had the entire community come out for us at multiple benefits. We fully intended to try to thank as many individuals as possible, but alas, the number of generous, thoughtful people overwhelm us. These meager but sincere offerings of thanks will have to do.

As we move into the next phase, we have the always daunting task of trying to balance Henry's comfort and pain relief with the continued search for a cure. And we will continue. We still plan to have our cake and eat it, too.