Continued Progress: The Disappearing Warts

September 21st - September 28th

I am writing the blog while on the road again, in my hotel room watching Monday night football. But I will be focused just long enough to update everyone on Camryn. Last Friday was a very long day for both Camryn and Lee Ann. Lee Ann was the schedule keeper moving Camryn from medical appointment to medical appointment throughout the day at Vanderbilt. Camryn saw more medical specialists that day than most of us will see in a lifetime. By the end of the day she was one exhausted patient and ready to do anything that was not associated with a hospital or doctors. The reports regarding the functionality of her organs look good with no major concerns; specifically the heart, lungs, liver, kidneys, and eyes. Before Camryn began her chemotherapy over three months ago, Lee Ann and I signed forms giving our consent to so many documents stating the risks associated with chemotherapy, it was enough to almost second guess what you were doing. But for Camryn, there were no other options to reverse her medical condition; a bone marrow transplant was the only way. Now, nearly 100 days post transplant, which is actually this Friday, we have seen miraculous physical changes in Camryn with the disappearance of about 80% of her warts; something we wondered if ever that would be possible. Tomorrow, during Camryn's medical appointment, she will find out what day her surgery is scheduled to remove her venous catheter. Camryn has been so patient with everything and the last month she has been the perfect patient easily taking all of her medications. She yearns to simple things again, such as going to the mall, hanging out with friends, or just being out in public. The one thing we don't want to do is to jeopardize all of her great progress. We still have to be very careful with her. Nothing has changed with her "isolation"; No school, church, movies, shopping, etc, until January. This is hard for Camryn to hear and to understand because she looks great, feels great, and is ready to resume living her life. Remember, three more months kiddo, you are halfway there. Be patient, be a patient with patience!
Pictures next week, sorry for the delay.

Day 100: The last major hurdle

September 15th-21st

Before I discuss the relevance of day 100 post-transplant to Camryn, I would like to share some other items that may be of interest to you. You may recall that a few weeks after the bone marrow transplant,  some of Camryn's largest and most troublesome warts began to shrivel and drop off. The transformation was remarkable to see. About a month ago some of the remaining warts did the opposite, they began to grow, especially those on her hands, which was somewhat expected. Now, within the last few weeks, those warts are beginning to shrivel and dry up. These are the peskiest among all those pesky warts and they appear to be finally losing the survival battle. As you can
imagine, Camryn is quite happy to see those things disappear. Except for one lone holdout wart, Camryn's feet are now all clear of warts; which was unthinkable three months ago considering the soles of her feet were covered with so many warts it gave the appearance as one gigantic wart. We continue to be amazed at  Camryn's transformation made possible by Morgan's bone marrow. Thank you again Morgan.

Day 100. Next week Camryn will have, hopefully, her last battery of organ function tests. She will have her heart, lungs, eyes, kidneys, etc, all checked to ensure no issues. If all goes well Camryn will then have her central line, venous catheter, removed. Camryn is most excited about that. It's been hard for her to live with that line for past 100 days, but she has done very well being patient with the daily routine of flushing the lines and having that tube dangling from her upper chest. The one test that will not occur, much to the elation of Camryn, is the bone marrow biopsy. Because Camryn's recovery has gone so well, and the assumption that her newly transplanted marrow is fully functional and 100%  Morgan's, as is evident from the disappearing warts, her docs decided the biopsy in no longer necessary. Even though it's just a marrow biopsy, it's still very painful and takes 3-5 days to recover. While day 100 is enormously significant, it still is only a milestone on the same road of recovery that Camryn must travel. She still must remain isolated from the public until January and
EVERYONE in our immediate family MUST receive a flu shot; and that includes the three college kids who must also comply if they want to be home with the family at Christmas. Each of us receiving the flu shot protects Camryn. She can't have one yet because her immune system is still firing up. Introducing a live virus into her body now would not be wise. So my needle phobic children will need to toughen up and get the shot, the big babies. So, Camryn continues to progress exceptionally well on her road to recovery.
Next week: some pictures of the fuzzy headed girl.

The Emotional Goodbye

September 8th - 14th

Good week for Camryn's medical appointments; just a few medication dosing "tweaks" at the recommendation of her docs. Camryn has been absolutely perfect complying with her medications the entire week. She now will actually begin her sessions on her own and take the pills in less than 5 minutes, every time. Nearly three months into this thing and she finally "gets it". Yipeee!

A very touching moment occurred last Wednesday that I believe is worth sharing. As you can imagine, Camryn and Morgan (Camryn's bone marrow donor older sister) have become very close since Morgan was identified in January as the donor.  This Summer, Morgan has spent an enormous amount of time being with Camryn, not just at the hospital, but at home as well. On Wednesday, last week, Morgan left for college. She and Lee Ann flew out West last Wednesday morning. Lee Ann will return home tomorrow (Monday), but Morgan will remain in Idaho (BYU - I) to begin her Freshman year. Camryn insisted that she ride with us to the airport to say goodbye to Morgan. I knew that this would be a tough moment for both Camryn and Morgan, I just didn't realize how tough. As Lee Ann and I were quickly unloading the luggage for curb side bag check, Camy climbed out of the car, and there on the curb,  held on tightly to her Morgan. I was watching all this while simultaneously dragging luggage over to bag check counter. I called to Morgan that it was time for her to get in line to check her bags. As Morgan attempted to walk away from Camy, Camryn began to wail, loudly. She would not let go of Morgan. I walk over, pried Camryn off Morgan, both girls covered in tears, and held her as Morgan and Lee Ann walked away.  Camryn was just sobbing, there was no consoling her. I drove away with Camryn peering out the rear window of the car, sobbing while waving goodbye. If ever there were a goodbye scene worthy of a big screen Hollywood tear-jerker movie, this was it. The twenty minute drive home was a mix of sobs and silence. I felt it best to just say nothing. An hour later at home, she started talking, in between tears. It took a couple of days, lots of texts to Morgan, a few more tears, but Camryn is going to be fine. The marvels of modern technology will ensure a constant line of communication between the two sisters. Tough day, glad it's over. Looking forward to Christmas, when these two siblings will be reunited in person; that will be a very merry Christmas.

Outwitted By A Twelve Year Old

September 1st - 7th

The medical appointments went well this week. Again, Camyyn's blood draw "numbers" are looking great. Because Camryn continues to do well, the docs said a possibility exists that Camryn may not need a marrow biopsy at day 100. I know that Camy would definitely be in favor of that. Those biopsies causes her to be anxious, even though she has had four, and recovery is not easy. A little progress this week in reducing Camryn's rash and itching. The rash appears to be reducing and the itching not as intense as last week. Lee Ann and I suspect that we may have found a possible reason for the flare up of graft vs host disease, which I will now explain. As the readers of this blog are aware, Camryn has had some difficulty being compliant taking her medications. We have had some looooooooong nights, mostly Lee Ann and Morgan, staying up with Camryn to ensure the meds went down. Two things are important to understand here; first, some of her medications MUST be taken exactly 12 hours apart or she could have unbalanced blood levels, too high or too low. Secondly, whoever is helping to "proctor" Camryn's nighttime medicine taking session, can easily be overcome with sleep as the clock approaches midnight or later. Keep in mind that the night sessions begin around 9:00 pm., morning session is at 9:00 am. Why 9:00 pm? Various reasons but primarily to work around Vandy morning medical appointments, to avoid conflicting with other scheduled family activities,  and 12 hours apart from the morning session. So last week, Lee Ann was "on duty", and by herself for the week since I was in N.J. and Morgan was enjoying one last fling at the beach with a friend and her family, before she heads off to school later this week. One of the nights last week was a particularly long session and Camryn was just having trouble (translation: she did not want to take her pills) so Lee Ann went to bed around midnight. In the morning, Lee Ann was checking the chairs around the kitchen table, where we sit for the "pill taking sessions". For whatever reason, Lee Ann lifted up the cushion on the chair where Camryn sits and found some pills that had been hidden by You-Know-Who. When Lee Ann called me to tell me of her "discovery", all I could do was to sit there in silence on the other end of the phone, dumbfounded by being duped for who knows how
long, by the 12 year old little stinker. I really wanted to yell at Camryn, lecturing her on why what she
 was doing could seriously hurt her and her recovery. Then, after a few moments, this smirk of admiration appeared on my face as I tried to think how Camryn pulled off such a stunt while being "proctored". My anger was replaced with, I am embarrassed to actually admit this, pride. I was proud that she could actually pull off such a stunt, a stupid stunt, but very clever. Can you believe that? Even now, typing this blog, the smirk is back. Absolutely shameful on my part. Nevertheless, Camryn DID in fact get lectured and we have doubled the proctoring. The last four days Camry's pill taking sessions have been 5-10 minutes, that's it. Something has finally clicked in her head that swallowing her meds is no big deal, AND she would prefer to have access to her iPod. Children can be clever, but parents can leverage access to certain assets. Payback is fun, for the parents!