Make-a-Wish Adventure and Camryn's Closure

March 7th, 2015.

Well, it's time to actually close the blog by posting one last time. So much has happened since our return from Camryn's Make-a-Wish trip that included Disney World, Universal Studios, and Sea World. At the end of the blog I will post some pictures as well. But first, I want to start with what occurred last Sunday. You need to know, that all throughout Camryn's life, and specifically dealing with the warts all through her life, the chemotherapy, and her hospitalization, she has NEVER complained nor bemoaned her circumstance. In fact, Lee Ann and I have attempted to persuade Camryn to discuss what she was thinking and feeling throughout everything, even prior to her diagnosis. She never would. Camryn is the quintessential "concealer", essentially burying the sad, traumatic, or unpleasant experiences. Up until last Sunday, she had never before spoken candidly and truthfully about her experiences related to life with warts, her diagnosis, and her treatment. For those of you not familiar with our faith, the first Sunday of the month, we fast for two meals and and donate the related costs of those two meals as a "fast offering" to the church, which in turn utilizes those funds to assist those in need (food, clothing, utility bills, etc.). Also, as part of the fast, our worship service is dedicated to individuals "witnessing" their faith or "bearing testimony" of one's faith in Christ through their respective experiences. Halfway through our meeting, which lasts a little over an hour, Camryn leans over and whispers in my ear, "I am going up there to bear my testimony". I, disbelieving, stared at her for a moment and muttered "ok". Off she went to the podium in the chapel to do something that she had done before, but not in this manner. As Camryn began to speak, she first of all thanked everyone for their prayers and their service to our family. She mentioned how she felt the prayers and how they lifted her spirits. She then began to reveal, in all candor, what life was like to have those warts, go through chemotherapy, and to be hospitalized for those five weeks, and then confined to the house for six months. The terms "horrible", "just awful", and "I was so sick" were used multiple times. Camryn wept as she spoke, Lee Ann and I wept as she spoke, everybody wept as she spoke. For the first time, Camryn let it all out; the pain, the frustration, the anger, the humiliation of those warts, and yet, she expressed the peace of the gospel she felt despite being so sick and hating having to endure her trial. Just as Camryn was finishing bearing her testimony, Lee Ann and I glanced at each other, I mouthed the word "WOW" to her, and Lee Ann completely understood what I meant. For the first time, we both heard, along with everyone else in the congregation, what Camryn truly experienced and how she felt about it all. For the two of us, this was a moment to appreciate and to cherish; for Camryn was finally experiencing a form of closure. The closure of finally saying good riddance to those nasty, pesky, horrible warts (that actually saved her life in a strange way). Good riddance to ALL the stares from people looking at Camryn's warts as though she were a "circus freak". Good riddance to the five weeks of hospital seclusion and isolation, blood draws, hair loss, and bad food she couldn't eat anyway. And finally, good riddance to the most awful experience of all, the chemotherapy that made her so very sick and weak. As Camryn returned to her seat next to me, she rested her head on my shoulder. She didn't need to say a word to me, I already knew. I just put my arm around her, hugged her, and silently gazed at her in amazement. This girl had the courage to face her demons (figuratively speaking) and chase them away for good. She found strength from her faith in Christ.

Moving forward, Camryn is doing so incredibly well; emotionally, physically, mentally, and spiritually. She is absolutely not just enjoying school, but loving it as well (how about that attitude?). She was welcomed back enthusiastically with open arms by administrators, teachers, and of course,  students. Camryn is taking only one medicine now, the oral antiviral which will be discontinued in July, about the same time Camryn will have her braces placed back on her teeth, YAY!

Make-A-Wish has to be one of the greatest organizations in the world. Camryn's trip was incredible, amazing, unforgettable, but most of all, very, very much appreciated. The full extent of our gratitude cannot be properly expressed. Camryn, and our entire family: Greg, Lee Ann, McKay, Casey, Kory (Casey's Hubby), Morgan (the "donor"), Sydney, Camryn, and Jaime Shae, had the most amazing experience together at Disney World, Universal Studios, and Sea World. I tip my cap to all three wonderful companies for helping to make this trip so incredible for all of us, especially for Camryn. I wish you could have seen her experiencing her "Utopia". For the first time since she was 3 years old, Camryn finally felt like just a Kid; not the kid with warts, not the kid who looks different from everyone else, not the kid at whom everyone stares. This trip was Camryn's catalyst launching her into her new life. That is what this wish trip was to Camryn. We were so blessed to be with her to see her transform before our eyes. She just blossomed! I could write so much more, but No need to write of all the details, other than the entire trip was just as it was told to us it would be; a unique experience of a lifetime. We will never ever be able to fully express our gratitude to Make-A-Wish, but you need to know, every time Camryn hears the words "Make-A-Wish", she breaks out that huge sparkling smile. Give Kids The World (GKTW), is the organization that houses all these Make-A-Wish people on their trips. The property is amazing and the experience of staying on their property is incredible. I travel a fair amount for my occupation, staying in hotels across the United Stated, and on occasion outside of the US as well. However, I have never been treated with the level of hospitality that were experienced at Give Kids The World, at any of the hotels where I have stayed. And get this, the place is staffed by volunteers; incredible people performing amazing acts of service for Make-A-Wish kids and their families. EVERYTHING we experienced at the GKTW complex was memorable and once again, greatly appreciated by all of us. Volunteers going above and beyond to help us with anything we needed, and providing superb service while doing it. Our gratitude to them, and to all who made this trip possible for Camryn, from the depths of our hearts we thank you all. Our trip could not have been any more spectacular than what it was. Camryn's wish did indeed come true and the trip enabled her to escape from her trials, for a moment, and to just be a kid having the time of her life! Our family wishes to express deep appreciation to all of you who have followed this blog as a form of support for Camryn. She has felt ALL of you, your prayers, and your love. We express gratitude to Dr's Frangoul and Domm, Camryn's oncologists, whose expertise, skill, and bedside manner make them the world's finest physicians! We also express deep appreciation to all the staff, especially the nurses who tirelessly perform their labores, within the immunosuppression unit at Vanderbilt. Thankk you to Dr Hummel, Camryn's immunologist, who is the one her properly diagnosed Camryn's rare immune disorder. We are forever grateful for your expertise. Lastly, thank you Morgan for donating your life-saving bone marrow to Camryn. Thank you for being the "perfect match". In one way or another, we all have been touched by Camryn's story and the journey she was required to take. For her, the journey was a necessity, yet fraught with obstacles of pain, of fear, and discouragement. Yet somehow, determination, perseverance, faith and hope prevailed. We have been truly blessed.

Thank you Camryn for sharing your amazing wish experience with your family. Please enjoy the photos.

December Update: Make-A-Wish makes Camryn's day and other assorted updates.

November 3rd - December 20th 2014

Well, admittedly, I have been a slacker with the blog the last 6 weeks. Things with Camryn have been going so well that I just have not felt the urgency to provide an update. Now, many reasons exist for an update, all good. First of all, since the last blog, written in early November, Camryn has been an absolute angel taking all of her medications which she is down to only three: the anti-rejection med which she will go off of in February, the anti viral pill which she will take until next June, and the magnesium pill which she will stop in June.   Camryn now has the cutest little short short hairstyle that suits her perfectly. Her hair is actually long enough now that she can actually "do something with it". Best of all, Camryn remains wart free. She has progressed so well her docs felt it was time for her to receive a flu shot because her immune system is functioning exceptionally well. Little by little we have been "introducing" Camryn back into society. She has gone with Lee Ann to some stores (early in the morning) and went with the family to select our Christmas tree over Thanksgiving. Camryn is still on track to begin attending school January 6th. Tomorrow morning (12/21/14) Camryn will return attend church for the first time since early June. She is so excited to see her friends and can't wait to "resume" living her life.

I want to share a couple of "fun" events that have happened since my last blog. First, for Thanksgiving, Lee Ann and I surprised Camryn by flying home McKay, Morgan, Casey and Kory. We had kept this all a secret so Camryn would have no idea. We had the kids go to the front door and ring the doorbell. She was shocked when she answered the door to find her siblings standing on the porch. She flew into the arms of Morgan and just sobbed for joy. The moment was precious and we had a wonderful Thanksgiving together, being truly, truly thankful for Camryn's rapid recovery. I believe that in a prior blog, I mentioned that Camryn was nominated by her Vanderbilt docs for Make-A-Wish, and Camryn's nomination was accepted by the Nashville chapter the Make-A-Wish Foundation. In fact, this Monday night, The Nashville chapter of Make-A-Wish will be hosting a "wish reveal" party for Camryn. This is where Camryn's wish, A trip to Disney World with her family, will become a reality. Camryn is unaware of the party so Monday night will be quite fun for all of us. Also, Macy's department store is a major sponsor of the Make-A-Wish Foundation. Each year, Macy's has a"Believe" campaign beginning in November where children can write a letter to Santa and drop the letter in the Macy's mail box. For every letter written, Macy's donates $1.00, up to 1 million dollars. As part of their campaign, local chapters of Make-A-Wish team up with Macy's to host a special day with one wish kid within a specific geographical area. Guess who was the Make-A-Wish kid selected to represent Middle Tennessee? Yip, that would be Camryn, and did she ever have a special day. Two weeks ago, Macy's invited Camryn to their store in Green Hills. Camryn had her nails done, had a makeover, did some shopping, and was treated like royalty. I will post some pictures below of the event. A special thank you to Macy's and to the Make-A-Wish sponsors for making Camryn's day a true "believe" day. Those awful life-saving days in the hospital, six week's worth, were so very difficult for Camryn, and any other child needing to endure chemotherapy. Believe Day and The Make-A-Wish Foundation events such as these, help these kids to appreciate the good times and feel special. We were so honored to have Camryn be a recipient of these events. Look for the next blog in two weeks, after we return from Camryn's Make-A-Wish trip at Disney World. I have posted pictures below of Camryn's Believe Day at Macy's.

This was the sign welcoming us at the main
entrance of Macy's.

Nails first, by a real professional
in the Macy's spa.

Make up time, "smoky eyes" and red lips
in process, at Camryn's request.

Just what she wanted, but a
little too grown up for Dad.

"striking a pose" with Dad.

Pictures: The Warts Are No More...

October 20th - November 2nd

Much has occurred within the last few weeks and some of that I will share, but some of it will just have to wait, not long, but a few more weeks. Recently, Camryn decided that she was tired of taking her pills, so she began faking taking them, again. Remember, she did this a few months ago which which altered her blood levels a little, which resulted in MORE pills to take. The kid is clever. Dropping them down her shirt, or her long sleeves, or slipping them into her pockets. She unloaded a bunch of pills upstairs in her bedroom where Lee Ann found them. Right now, Camryn only has three pills to take, twice a day. That is about one fourth of what she used to take. She takes two magnesium pills and one antiviral pill. She also takes liquid prograf, the anti rejection medicine. Lee Ann and I can appreciate the "pill" fatigue that she is experiencing, however, she must take the magnesium because the prograf depletes her body of magnesium, and the antiviral is absolutely necessary for at least another year while her immune system gains strength. Lee Ann and I did what was absolutely necessary to do to motivate her to take her meds...we took away her iPod. Camryn has now been "iPodless"for over a week. Also, she has had a "pill proctor" for each dosing session. Can you guess what the results have been?? How about full compliance in taking her meds. Maybe the proctoring had more impact, but the removal of the iPod has been more motivating. Today, she was given her iPod to use since her Sunday school class and Young Women's group Face Time her during their church meetings. However, just to ensure her newly found religion of taking her pills is genuine, we will keep her iPod for another week. Aren't we just the meanest parents in the world?

With Halloween approaching, and Camryn becoming even more stir crazy due to house confinement, we asked for and was given permission by her doctors for Camryn o trick-or-treat. Because she was doing so well in her recovery, except for the recent pill taking debacle, and since the activity was outside, they agreed. I don't know if I have ever seen anyone of our children so excited to go trick-or-treating. Truly, this was going to be Camyn's first opportunity, post transplant, of being a "normal"kid again, if there is such a thing. We had her all set up with antibacterial liquid, wipes, gloves, etc. She may have well been in a contained bubble walking around. Nevertheless, she had a great time, and cherished being "out" and collecting plenty of candy, most of which she gave away. You see, this Halloween, for Camryn was never about the candy, but rather about the opportunity of returning to the life she had five months ago, minus the warts. Mission accomplished.

Now for the fun stuff. We have plenty of "before and after" pictures to share with you regarding Camryn's warts. The pictures you will see of her warts were taken right after Camryn was admitted to the hospital, but prior to beginning her chemotherapy and bone marrow transplant. The after pictures were taken this week. What you will be seeing are the results only four months post transplant. The results, to us and to the doctors, are stunning. Especially considering Camryn has battled these warts, caused from her immune deficiency, for nearly nine years. Remember, she also had warts on her face, lips, ears, and inside of her mouth. Also, the soles of her feet also were covered with warts, completely covered. All those warts are now gone, ALL of them...

Right hand thumb

This wart is "Witchipoo"

Left hand fingers

"witchipoo" from the top side

Not sure why a bag of Cheetos
is in the picture, however, see
thumb and fingers

POST TRANSPLANT PICTURES

This finger, was "witchipoo"

This was the badly wart
infested thumb. skin is healing.

Right hand

Left Hand

A Simplified Life: She can't wait until January

October 13th - 19th

The first week of a simplified drug regimen for Camryn and no more intravenous catheter went well, with  a few minor  issues. The medical report for the week is all good, Camryn's vital numbers are right on target and she is now being slowly weaned from her prograft, (the anti-rejection med) which will take a few months.  Once she is off that med, her " new" immune system will kick into full gear. Since medical appointments are now only once per week, Camryn has more free time to "be bored". We keep reminding her that she has only two more months of isolation left and soon she will be back in school and living a "normal life" once again. The good news is that Camryn now has even more time to get reacquainted with "reading"; books, magazines, articles, etc. It's time to put the iPod away for a while as Camryn begins to really focus on returning to school and carrying a full workload.
Next Week: An update on Make A Wish.

Day 100 Celebration: A New Journey Begins

September 29th - October 12th

Yes, I know, the last blog post was two weeks ago. I assure you, this post will more than make up for what was missed last week. There is so much to get everyone caught up to where we are now. Day 100, that is 100 days post transplant, has now come and gone, but not without a little fanfare as Lee Ann planned a birthday party for Camryn's new 100-day-old immune system. And yes, that is weird, but in a good way. We did have fun and the "celebration" allowed us to momentarily appreciate the journey that Camryn, Morgan, and our family have walked together. In some sense, day 100 has been a relief, a comfort, and a huge psychological milestone for all of us. Four months ago I could not even imagine what this day would mean to us, because at that time, the focus was entirely on just getting Camryn through chemotherapy. You could say that our stress levels have significantly dropped since then. Camryn's health is in a very good place right now. Her remaining warts continue to dry up and fall off.  The only warts that she has left are on a couple of her fingers where the wart clusters were quite large; and those warts are now turning dark a drying up. What we are witnessing on a daily basis is truly remarkable.

The surgery to remove the central line in Camryn's chest went very well, no issues at all. Camryn certainly will not miss that long chord dangling from her body; nor will she miss the daily flushing of the line. All that will remain of the central line will be small scar on the upper left side of her chest near her heart. To me, a gentle reminder of a journey, traveled by our family down an challenging, unfamiliar, but necessary road.

For the next three months, Camryn's restrictions will remain the same, but she will not need to take as many medications as she has been required to do. Camryn remains "isolated" until January, meaning no school, church, movie theaters, or public places. Of the six month "quarantine", only 2 1/2 months remain. Yet those 2 1/2 months seem like years to Camryn. Even though Camryn's immune system appears to be fully functional and is destroying all of the remaining warts, Camryn still remains susceptible to some opportunistic infections. In fact, everyone in our household, is required to receive a flu shot to protect Camryn since she cannot have one yet. We all received those last weekend. Trust me, for a couple of our older children, getting that shot was a HUGE sacrifice in behalf of Camryn
(we have some highly needle-phobic children).

One other item to share, a very special and touching item.  Recently we were contacted by the Make-A-Wish foundation. Camryn had been nominated by her physician's at Vanderbilt to participate in the program. Not only was she nominated, but her nomination was accepted by the program. I admit, prior to all of this I plead ignorance regarding the program. I knew of the organization and some of the great work it does, however, I simply did not understand all that the organization does in behalf of children, who experience life-altering challenges such as illnesses like Camryn's. We have since had multiple visits by members of the local chapter of the organization and have been educated on the wonderful works and dreams this organization does in behalf of children. Camryn had a couple of weeks to determine her wish, and understand, the wish IS hers, not the family's nor her ever-persuading sisters' wish. Camryn choose something that she has always cherished, time with ALL of her family at a place she dearly loves...Disney World. That is her wish, a Disney World trip with her family. All of the particulars are being worked out, details will come later. We are quite overwhelmed by all of this and humbled by the numerous volunteers and organizations that make such dreams as this one come to life for children. No doubt, this trip will be a forever-memory maker for not only Camryn, but also for our entire family. How does one adequately express thanks and gratitude for such kindnesses and blessings? Somehow, we will find a way. More next week...

Please enjoy the promised pictures, posted below:

Day 100 Celebration

...AND ice cream!

Of course, no celebration is
complete without a cake

Getting prepped for surgery
to remove intravenous
chest catheter.

Post surgery slumber
in recovery.

Jaime Shae using her hands to
"paint"Camryn's fuzzy head

All of us, picture taken two months ago when
everyone was home for the summer
to help with "Camryn's Journey"

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.