Wednesday, March 31, 2010
Monday, March 22, 2010
Matt's surgery went very well last Tuesday. There were no complications with the gallbladder removal at all and he did well with the anesthesia. His recovery has been great too. He was definitely sore and tired for a few days but really began to perk up last Friday and get around much more easily. He and the boys enjoyed cheering the Xavier Muskies on to victory on Thursday and Sunday and have loved the basketball tournament so far. It was perfect timing for Matt to have to take it easy and take in ALL the games!
Max had another fabulous appointment down at Children's last Friday. Dr. Davies continues to think he is progressing well and even gave him permission to play in a summer basketball league, to which Max once again did the happy dance in the bed! The biggest item that the team stressed to us is the importance of continued safety in the sun, especially this summer and in Florida. This is due to the risk of graft vs. host being triggered by a sun burn. As a result, we need to keep sun block on him whenever he is in the sun, avoid the hours of 10 til 2 this summer and have him wear a hat and sunglasses to protect his face and eyes. He will also need a long sleeve swim shirt with sunblock in it and a hat for swimming, which he can only do in a private pool. We did ask about swimming in the ocean and Dr. Davies was ok with it, as long as Max showered off after getting out. All great news! Max got his usual IV infusion of IVIG and his inhaled pentamidine to protect him from pneumonia and handled it all like a champ. The nurse even gave him a certificate that said "Thanks for being a Rock Star today!" He was very proud.
I discussed the engraftment situation with Dr. Davies also and, in her typical style, she reassured me that I should not worry. She said that it will tend to go up and down and that she is in no hurry, as a result, to wean Max from the Cyclosporine. Her exact words were, "it's buying us time to be sure Ellee wins." In other words, the Cyclosporine is allowing Ellee's marrow to continue to grow and proliferate inside Max's bones so that when all immune suppression is removed, her marrow will take over and be the producer of Max's blood cells and immune system (and not the small bit of Max's marrow that remains).
They had not yet decided by the end of the appointment about Max's future monthly visits and what would be done going forward. They wanted to wait to see the results of some of the blood tests that were drawn before deciding. They also decided to wait another month to draw extra blood for immune system studies again, to see exactly where his own immune system stands at the nearly one-year post transplant mark. So, for now we are planning on heading down again on April 16th for a regular monthly visit and medications. We'll be patient, as usual, to see when that may change in the future. They also mentioned at the end of the appointment that Max will need a few other tests that they typically run at the one year post transplant mark so, we will probably be heading down for those soon too (they mentioned an EKG and some thyroid studies, etc). Overall, his appointment was great again and his progress remains "on track".
With all this good news, you can imagine how we are feeling - elated! We truly feel like we are turning the corner as a family. Matt's issues should be behind him soon and Max is really getting there, more and more all the time. We are beginning to regularly enjoy really fun things in life together again and we cannot express how wonderful that feels. It is really something just to see Max scootering up and down the streets here in the neighborhood with his brother and buddies, just doing what an 8 year old does! Not only do Matt and I find tears welling up in our eyes every now and then, just watching them but, many of our neighbors and family members have told us that they do too. It really has been amazing to see this miracle unfold before our eyes. To think of where we were only a year ago and how far Max has come already - truly inspiring!
On that note, we are planning lots of celebrations near the one-year post transplant mark. We have a date set for the blood and bone marrow drive so, please plan to join us to donate blood or sign up to be a bone marrow donor on Saturday, May 8th. More details to follow soon. We are also planning a special family celebration for the evening of Thursday, April 1st, the actual one year anniversary of Ellee's life saving gift to Max. I am sure that will be a special and fun celebration. We have two other celebrations in the works that we will tell you all about soon. We hope to see lots of you this summer and toast to Max's return to health!
We are all so excited to spend this weekend celebrating Aunt Sarah and Uncle Ryan's marriage. It seems hard to believe that it is already here - it felt so far away for so long and now, it is just 5 days away! We are thrilled to be a part of their special day and look forward to creating many fun memories this weekend. I promise lots of pictures next week! The boys are going to look so handsome in their little suits and Ellee, so beautiful in her little dress. I know it will be a one-of-a kind photo op, as well as a very emotional day for all of us. Such joy to celebrate!
We wanted to share the following link with you all too, one that Max is particularly fond of, due to his passion for the NBA: http://www.youtube.com/watch?v=IJ2RsJFGtNQ Just another reminder about how easy it is to make a BIG difference in someone's life! We were beyond blessed to have Ellee as a perfect match for Max but, as you know, we have met so many families that were not as lucky. YOU can be the difference for someone else. Please consider registering today if you haven't already.
Things are definitely turning for the better around the Meyer household and we could not feel more blessed. Thank you for your continued support, love, thoughts and prayers. More soon....
Peace and love,
Kristi (and Matt, Max, Alex, Ellee and Spud)
Monday, March 15, 2010
Wednesday, March 10, 2010
Max had a bit of a melt down on Saturday after the memorial service for Tom and the family party. He was tired and overwhelmed by everything, I think, and he just needed some down time. So, we headed back to my Aunt Laurie's house and had him rest for awhile and drink a bunch of fluids. Once he calmed down, he was ready to go again and enjoyed visiting with my Aunt and her family and playing with Papi, Mama and Uncle Patrick. It was an eye opening trip, however, and I was very glad we had the chance to get away from home for a weekend too to see that being away from home is ALOT for Max still. We rethought our planned trip to Disney at the end of April and have decided that the only way we are going to make it is if we take it really slowly and build in lots of down time.
The last day or so have been somewhat momentous and emotional for us as yesterday, March 9th, marks one year from the official start of Max's transplant journey. We checked into the Hem/Oc/BMT floor of Children's Hospital one year ago yesterday to begin Max's preparation for the bone marrow transplant from Ellee. One year ago today, Max got his first dose of chemotherapy to rid his body of his old marrow...a painful shot to his thigh. The memories of those days are difficult. We were so scared and full of worried anticipation, not knowing what to expect and what each day would bring for little Max. Looking back on them fills us with mixed emotions. We realize how far Max has come and how grateful we are for his healing...and yet, in an instant, those feelings of fear can come flooding back.
With these memories and emotions in mind, Matt and I and his mom got to do something last night that ended up to be very appropriate and impactful. We were invited to attend a donor event for the Cancer and Blood Diseases Institute at Children's where Dr. Davies and a patient's family spoke about their battles against leukemia. It was highly moving and inspirational. We were in the room with many of the doctors from the Cancer and Blood Diseases Institute that work every day to find better and better ways to battle blood diseases like leukemia and aplastic anemia. Dr. Davies did an incredible job giving an overview of what her research team is working on and the promise that it holds for so many sick children and their families. Then, the Rumping's, a family who's 2 year old daughter, Hannah, battled and beat leukemia through a bone marrow transplant, spoke about their journey. Listening to the Rumpings brought back more tough memories for Matt and I and yet, we left the event feeling extremely inspired and motivated. We cannot do enough to support the amazing institution that Cincinnati Children's Hospital is. There is no way to ever express our gratitude for the loving care that they provided to Max and for the life-saving miracles they performed for him. But, Matt and I are determined to do everything we can to show them how much it meant to us through our unceasing support and assistance. We have already begun to think about how to get Max's Mighty Mob even more gigantic and more financially impactful in 2010! We talked last night about how exciting this year will be with Max leading the Mob! All the doctors, nurses and development staff at Children's are excited to see him up there, marching along with a huge pack of supporters behind him! So, get ready for one heck of a Mob in October!
Upon returning home from this event last night and in my effort to get Easter Brunch lined up with Max's Meals, I have been thinking quite a bit about Max's Meals role in all this. I love that, with the support of many of you, we are able to provide a meal to the inpatient families on A5 on special occasions, just to brighten their tough times a bit. But, I don't want giving to Max's Meals to take away from giving to Children's Hospital. The real solution here is finding ways to prevent these families from ever having to be inpatient at Children's and that is what Dr. Davies and her team are hard at work on. Thus, the more funding for her efforts, the better. However, we know that her solutions will take time and, in the meantime, families are enduring very difficult times and need to know that there are people thinking of them. That's where Max's Meals helps. It's just a little ray of sunshine so that those family's know they are not forgotten and people do care and understand their struggles. What I'm trying to say is, thank you for your support of Max's Meals and I would love for it to continue...just don't do it in lieu of supporting Children's efforts. That is more important.
There is no way to ever thank a group of people for saving your son's life...that's what Dr. Davies and her team have done for our family. All we can do is be grateful to God for the many, many blessings that he has bestowed upon us and work to spread his love by caring for those less fortunate. We believe that one way we can do this is by partnering with Children's and sharing Max's miraculous story of healing, in an effort to inspire others to support this fabulous institution and their many life-saving efforts.
Thank you for your continued love and support. More soon...
Peace and love,
Kristi (and Matt, Max, Alex, Ellee and Spud)
Wednesday, March 3, 2010
It's day +337 for Max and we have LOTS to blog about! It's been awhile since I have been able to write, largely because we have been busy...mostly good busy. Things have calmed down on the health front, thank goodness! Max has gotten rid of his cough and been feeling great lately. He looks good and has more and more energy all the time. His cheeks even seem to be getting a little bit of a pink glow back in them. He is definitely still more pale than usual but, continuing to make great progress. His engraftment continues to be a bit of a challenge but, nothing that Dr. Davies is too excited about at the moment (her words exactly). It dropped again last week to 83.3%, the lowest it has been since the transplant, and Matt and I were concerned. But, Dr. Davies and her team have reassured us and told us not to worry. They are watching it and have tweaked his cyclosporine dosage, in hopes that it will rebound, and are not overly concerned.
Matt is also feeling much better. Three days after he got out of the hospital he was back at work and he started running in the morning about two days after that. He remains on a strict low fat diet (nothing with more than 3 grams of fat per serving) and is planning to have his gallbladder removed in a few weeks to remove the root of the problem. We are so thankful that his gallbladder is the cause of his problems as that is a relatively easy fix and he should be done with any attacks after that is removed. The path he took to that diagnosis wasn't the easiest, to say the least but, we are just grateful that we know what caused his pain and that his issues will soon be resolved for good.