Archive for March 2012

March 27th, 2012. Day +382. Charlotte’s one year post transplant dental exam.   3 comments

Charlotte had her one year post transplant dental exam on Friday.  Amy called me with the results and said, “I’m totally a cancer Mom.”  Her teeth are not in the best condition.  Charlotte has very serious enamel damage to about 4-5 of her teeth resulting in decay that will require fillings, crowns, and possibly extractions.  Amy told me that the dentist and assistant kept apologizing that she would have to go through all of the fillings, etc and Amy just kept telling them that after what CJ has been through, we will take it.  Rather than having several return visits to the dental office, her dentist recommended that we actually try to fix all of the teeth while Charlotte is sedated so that we can just get them all done at once.  There’s no reason for Charlotte to start fearing the dentist this early.  It means another trip to the hospital for the sedation, but again, if this is the worst of our worries at this time, I don’t know that either of us will complain.  Amy was so proud of Charlotte at this first dental trip.  The office was so kid friendly and Charlotte happily ran after the dental hygenist to her chair where she proceeded to brush the teeth of an alligator.  She allowed them to check her teeth (thank goodness), brush them, and “paint on” a fluoride treatment.  She was awarded two coins to later choose two prizes from the dental vending machines.  We’re so happy with choosing this dentist and think Charlotte will actually be happy to return there again.

The dentist told us that this is not uncommon after such chemo treatment regimens and the extended period of time that she was so immunocompromised.  They also state that they would like to do x-rays to see the status of her teeth that have yet to emerge as they could also be affected by the chemo.  A call to Charlotte’s NP confirmed that this is quite common as she stated the high dose chemo just strips the enamel off of the teeth.   We double checked the transplant binder and found the same information and even mentioned that children under the age of 3 during transplant typically have the worst damage to their teeth.  Neither Amy nor I remember hearing much of this information in our pre transplant meetings, but we were probably still stuck on some of the more important facts and concerns so we probably just missed it…

We also have all of the results of her immunization titers.  It looks like Charlotte will have to get all of her childhood immunizations again over the next couple of years.  It stinks that she has to go through all of the shots again, but it is a small price to pay knowing her immune system is right where the doctors expect it to be at this point.  We also let the donor center know that we would be interested in releasing our contact information to Charlotte’s donor if she were interested in finding it out.  So we’re excited about that next step.

After returning home from the dental appointment on Friday, Amy checked her email and received a wonderful surprise.  There was an email from the National Bone Marrow Registry stating that she is a potential match for a patient!  With tears in her eyes she called me very excited and then proceeded to call the registry immediately.  She answered some basic health questions and was informed some more about the donation process….which she already knew about.  The patient is in the very early stages of discussing treatment options and his/her doctor just wanted to see if there were any potential matches on the registry before they even really discussed transplant as an option.  So…..this could turn out to be nothing and Amy was told that if she does not hear anything in the next 2 months to consider the issue done.  But Amy is so excited as she has only been on the list since December 2010.  This would be the ultimate way in giving back.

Please keep praying for Mitch.

Posted March 27, 2012 by L. Elske in Uncategorized

March 20th, 2012. Day +375.   4 comments

Amy and I would like to ask for your help.

We really need prayers for 18 year old Mitch.  Early Sunday morning, he had his right lung removed due to the aggressive fungus that was found.  He is now in a medically induced coma to enable his heart and lung to gain strength to allow him to recover from surgery.  As of their last posting, he had a fever and there was concern that the fungus had spread into his bloodstream.  His family has gone through the wringer over the last year and a half, and they are on our minds constantly.  At AFCH, we very much enjoyed talking to Mitch’s mother, she is a very kind and genuine person.

Would you please take a moment to write a thoughtful note on the guestbook of his caringbridge site:

http://www.caringbridge.org/visit/mitchellriley

Amy and I also are running out of ideas…we are planning on putting a team together for the 2012 Columbus/Fall River area Relay for Life on June 8th in honor of Charlotte.  Registration is tomorrow, and we have very few “totally awesome Charlotte-esque” team names.  So if you have an idea, would you please let us know by making a comment?  At some point, we will also be asking for donations and volunteers who might be interested in doing some of the walking.  I will walk the entire 24 hours if I have to, but my legs and my stinky shoes would probably prefer a break in there somewhere…We are very excited to watch Charlotte walk the survivor lap!

Thank you all so much for thinking of us.

Posted March 20, 2012 by L. Elske in Uncategorized

March 16th, 2012. Day +371   6 comments

Amy and I would like to ask you to pray for Mitch and his family.  Just before Christmas, Mitch had undergone a successful haplo-transplant with his father’s stem cells to fight his relapsed AML.

He is now back in the hospital with a very serious fungal lung infection that will require very risky surgery.

 

Thanks,

Lon and Amy

Posted March 16, 2012 by L. Elske in Uncategorized

March 12th, 2012. Day +367.   4 comments

We received the results of Charlotte’s engraftment study today.  If we read the report correctly, it is showing that she is still greater than 98% donor.

So that’s some pretty awesome news.

 

That is all.  Thanks for checking in.

Posted March 12, 2012 by L. Elske in Uncategorized

March 11th, 2012. Day +366   7 comments

Charlotte fighting her 105 degree fever following her first IV chemotherapy at 11pm on September 11th, 2010.

Eighteen months ago today, our world was turned upside down when our then 27 month old Charlotte was diagnosed with AML, a rare and very aggressive form of adult leukemia.  Her oncologist told us that, without immediate treatment, most children lose this fight within three weeks. It was a tough six months of treatment for all of us.

CJ resting during the morning of her stem cell transplant on March 11th, 2011.

One year ago today, Charlotte received the greatest gift we could have ever hoped for; a real chance at a normal life in a bag of stem cells from an unknown donor’s bone marrow.  We are still in awe at such an amazing gift from a complete stranger.  Her donor will forever be our hero.  The transplant conditioning chemotherapy  and acute graft vs. host disease attacked Charlotte pretty heavily those first few weeks.  But she kept fighting and the staff at AFCH took such wonderful care of her…

Now, one year later, Charlotte is happy, healthy and enjoying life like Amy and I could have only dreamed about.  She has yet to truly understand what she has gone through these last 18 months.  She looks at pictures from the hospital stays and you can see her trying to process what she is looking at.  We have had more questions and discussions with her now about her leukemia/transplant than when we were living it.  We can only imagine more questions in the future and hope we answer them in the best way possible.

It’s difficult to find the words to describe how happy, relieved, and blessed we feel today.  This has been the longest, most emotional, and most rewarding year of our lives.  We have found more strength than we ever knew we had.  We have created an even greater bond as a family and have deepened our faith.  Yet we would be lying if we were to tell you that Charlotte’s journey is over.  Or that we don’t continue to fear relapse every single day.  Although one year post transplant is an absolutely phenomenal milestone, we have 4 more years before Charlotte can be considered cured.

Charlotte enjoying the wonderful weather today, March 11th, 2012.

We try to remain positive…remember our mantra?  She’s done great, she’s doing great, the odds are in her favor….this will be her cure!  But some days it’s hard to find that strength.   Our hearts still ache for the patients and families we met or learned about who haven’t had the joyful year we have experienced.  Please continue to pray for the families of Alison, Alexis, Maddie, Keanah, Andrew, Drew, Ross, Ben, Don, Patrick and Paxten.

We received a very special gift today on this one year “birthday.”  A mother contacted us about her little girl, Jade, who was diagnosed with AML-M7 in January of this year.  Like us, she and her husband were scouring the internet for positive M7 stories to find some hope within the diagnosis.  She thanked us for our blog and for sharing Charlotte’s story.  If you remember, we started this blog for three reasons:  1).  To update family and friends about how Charlotte was doing,   2).  To share with Charlotte her story when she was older, and   3). To give other M7 families a real-life story rather than just reading horrifying statistics over and over again.  We feel so honored that the family contacted us today.  Please add their adorable little girl to your prayers too.

http://jadeamarah.blogspot.com/

Amy and I both said that she reminds us a lot of Charlotte…..demonstrating her fighter attitude by running the halls during chemo rounds with a wonderful family in her corner.

Posted March 11, 2012 by L. Elske in Uncategorized

March 6th, 2012. Day +361. Charlotte’s one year post transplant clinic appointment.   9 comments

Charlotte started the day out early at the second floor of AFCH getting some blood drawn for todays tests.  She had  the usual CBC labs run, as well as the engraftment study, and titer tests to determine what immunizations she will need to receive again.  She did very well with the phlebotomist this morning.  Nani was an old favorite of ours when they used to come into the hospital rooms early in the morning to pull blood for daily labs.  She was always very friendly and we missed seeing her.

Up next was the echocardiogram to determine how much damage, if any, the transplant chemo did to her heart.  She behaved pretty good for the tech during the test, until she was told they were finished.  It was then that she started to really cry and let us know she wasn’t thrilled with laying there for that amount of time.  Once we had her shirt back on and told her what was up next, she recovered quickly.

She left the clinic and headed up to the 4th floor to see some of her former nurses and surroundings.  We were very happy to see all of the nurses, NAs, NP and doctors and even the custodial staff!!  They all really become your second family when you spend so much time there.  They were all impressed with how much she has grown and how good she looks.  Many of them haven’t seen her since she left the hospital last April, all loaded up on steriods and looking like a very different girl.  Charlotte also loved showing them her photo book of her Make-A-Wish trip.

CJ then had her hearing test.  She started out really happy and cooperative, but a little over halfway through the test she started getting unhappy saying the headphones were hurting her ears.  The only other option they had was in-the-ear headphones and she wanted nothing to do with them.  It took quite a bit of convincing but she ended up giving the headphones another try.  It didn’t last more than a few minutes and she was just too unhappy with the discomfort and was crying and hollering too much for the test to continue.  The techs did say that she had completed enough of the test to determine that there wasn’t any sort of measurable damage that they would expect to see from the antibiotics/chemo used in the transplant process so we were happy to hear that news at least.

She ate a great lunch at the cafeteria and threw some coins in the water fountain and then left for the UW Station for her vision test.  The doctors there are terrific and were very happy with how well she was seeing, noting no decline from her last visit in September.  We thought they were planning to dialate her eyes again but they didn’t feel the need to and said she doesn’t need to see them for another year!  That is more welcome news.

After that was our regular HemOnc appointment with Dr DeSantes.  Instead, Charlotte was seen by one of the two new pediatric transplant doctors today, Dr. Shin.  The one year post transplant mark is a pretty big milestone in the BMT world.  Charlotte is now off all medications as of today, with the Dr. having dc’d her [preventative] acyclovir.  We loved how the nurse and doctor both stressed that we should now be trying to regain some normalcy by taking CJ out to do more regular preschooler activities.  They mentioned sports leagues, swimming lessons, etc.  It was a wonderful thing to hear.  We have been conditioned to try to keep her isolated and [hopefully] healthy since the beginning of this journey so we welcome that challenge.   The results of her echo already came back showing all normal ranges, no noticeable damage.

Charlotte’s CBC numbers were: WBC  6.9, Hemoglobin 12.4, platelets 299k, and 3710 neutrophils.  All within normal ranges-all perfect.  We won’t know the results of the titer test for a couple more days, and the engraftment study will take 2 weeks.  The appointment wouldn’t have been complete without a visit from Dr DeSantes himself though.  He did peek in towards the end of the hour and was very smiley and happy with her progress.  We have known Dr DeSantes for a year and a half now, and we know that his smile will tell us more than his words ever can.  He also told us that Charlotte won’t have to return to the clinic for three months, the next visit being with her original primary oncologist, Dr. Diamond.

We are truly thankful for the staff of AFCH, Dr. Diamond and Dr. DeSantes, and for Charlotte’s selfless bone marrow donor.

Posted March 6, 2012 by L. Elske in Uncategorized