Friday, November 12, 2010

Day +590: Gellin'

It's day +590 for Max and life continues to be incredibly good! Max had his monthly checkup and labs last Friday at the hospital and came home with a big smile on his face! His labs all look great and Dr. Davies answered two of his questions just the way that he wanted her to - he is now allowed to swim in public pools AND he can play football next fall (uh, oh)!! These are two huge milestones for Max, once again! In addition to this good news, we discussed the possibility of beginning the wean of his cyclosporine (immune suppression) medication. His engraftment has been pretty stable the past six months or so at right about 90% so, Dr. Davies had the nurse draw some extra labs to look at one more part of his immune function before deciding for sure about the wean. Those results should be back soon so, we should hear more within the next few days about this big step. Needless to say, we are excited about this possibility and, at the same time, nervous. We are going to need to take this slowly and watch things closely to be sure that Ellee wins the marrow war. I reassured Dr. Davies many times last Friday that we were not in any rush and wanted her to be sure, which of course she will be before she even begins. To be honest, I could tell that she is nervous as well as she kept saying, "maybe we'll wean just a tick." We are going to have to try this at some point in Max's best interest, we all know. It's just going to be a bit of unknown territory and therefore, nerve wracking for a while.

There was additional good news from Friday too. Max has been receiving an inhaled medication, Pentamidine, each month to protect his lungs from a specific pneumonia that can affect immune suppressed individuals. Beginning in two weeks, we are going to switch over from that inhaled medication to an oral med that he will take twice a day for three days each week. Thus, his monthly visits will be even shorter than they have been down at the hospital!
As we drove down to the appointment last Friday, I was actually kind of excited to see everybody at the Clinic as we had not been there in five whole weeks!! I started to realize as I drove that we are quickly becoming strangers to the place, in a wonderful kind of way! It's a bit of a weird place to be because the nurses, care managers, nurse practitioners, doctors and child life folks have really become like a second family to us. It's kind of hard not seeing them for such long stretches of time and yet, it's exactly what we want!! We joke a lot with them when we are down there as we leave and say, "hope we don't see you for a long time!"

Max is treated like a celebrity when we are there. As we wait at the check-in desk, one person after another passes by and says "hello" to him and remarks about how great he looks. Once we are in our clinic room, he typically gets lots of extra visitors that stop in to see him. I have come to realize that the team down there needs to see him...they need to see the successes! That's why they are there. We are always thrilled to see our buddies from down there. Every one of them has been important to us along this journey.

I seem to be spending more time down at the hospital now focused on Max's Meals & More and giving back then anything else! Exactly as we had hoped! We had a fabulous Halloween luncheon with some really special moments. You can read all about it on our site at Thanks to everybody that donated items for the treat bags. They were a huge hit! We are busy planning now for the Holiday Tea on December 5th and for Christmas Eve brunch. I'm going to be putting some kind of bags together for the families for Christmas Eve again so, if you are interested in contributing to those or helping to put them together, watch the Max's Meals site!

The Vendor Fair to benefit Max's Meals & More that my neighbor, Katie McHugh held last weekend was also a success and a lot of fun! They have raised more than enough money to fund a meal for the floor already and more is to come! I enjoyed purchasing items from most of the vendors too! Thanks to all of the vendors that were there and to those that sent things to support the Fair. My aunt in Cleveland even donated some of her famous tie-dyed socks from her non-profit, No Rulz Art that sold very well too! You can read more about No Rulz on Facebook. It's an awesome venture. Thanks, Annie for your support!

So much has been going on since I last blogged that I almost forgot to write about Halloween here at home! The kids had a ball! Max was an army guy, Alex was a crazy skateboarder dude and Ellee was a princess (shocker). The boys went all out this year for the first time ever. They were done with our neighborhood of about 45 homes in 30 minutes! So, we drove down the road and let them hit another neighborhood for another hour with their buddies. They were exhausted and cold by the time we got home but, proud of their loot and ready to dig in! I think we'll be eating candy for a couple of years, at least! No need to trick or treat for the next couple Halloweens! :) It was wonderful to see them enjoying the fun day so much. If you'll remember, last year Max was not allowed to trick or treat at all. He definitely made up for lost time this year!

The day after Halloween, I took Alex and Ellee to the doctor for their annual checkups, only to find out that they both had strep again! Ellee had some minor symptoms but, Alex had none so, needless to say, I was surprised. I had Max tested after school that day and he was negative initially but then, on Tuesday, he came down with super gooey, red eyes and after a visit to the pediatrician on Wednesday, was diagnosed with a sinus infection and a mild case of strep again as his culture had grown a bit since the test Monday! So, they are all just finishing another round of antibiotics and feel great at the moment. I have come to realize that this is going to be life for us for sometime to come. One little germ battle after immune system building block after another for Max and really Ellee too!

Just this week, Max and Alex got some new hairdos. They have been asking me for mohawks for a while now and I initially fought them about it and won. But, after the arguments, I realized that I didn't feel great about telling them no. I didn't know why I cared so much...I mean, after all, it is their hair, not mine! So, this haircut, I surprised them and told them that they could decide how they wanted their haircut. They both were thrilled and hopped right into the barber's chair to describe the mohawks that they wanted! Thus, we now have two little boys with crazy punk hairdos!! They are really growing on me, however. LOTS of people comment on them when we are out in public and they do look pretty cute, I must admit. They fit the boy's personalities...always ready for anything!

The other recent development that I've had is with my job at GE. They contacted me about two months ago to see if I would be ready to come back to my former position as they felt they really needed to get someone in it. I have been surprised that they have not filled it before now, honestly but, figured that my leave was good timing with the economy, etc. I was somewhat surprised by their call so, I just answered them honestly, telling them where things stand with Max and his health, etc. and that I just cannot be 40 minutes from home yet at this point. I really need to be able to get to him at school within 10 or 15 minutes, for everyone's sake. In addition, I explained that if he were to catch the wrong germ, he may need to be down at the hospital for some time still, even overnight, to get help and therefore, I could not be real reliable still. So, with that honesty, I essentially gave my two weeks. They decided to hire someone else for the role and end my leave of absence. All very understandable after almost two years time! It was a tough day for me. I must admit that I was very, very sad when I learned that I would have an official exit date from the company. I was with GE for 13 years and it was a great place to work. I really enjoyed my jobs there and miss working. But, this is the right thing for our family right now, no doubt. Now that I have had some time to think things through, I actually feel somewhat liberated. I have had a tie to them now for almost 15 years and it's kind of exciting to see what happens now that I don't. Hopefully I will end up back there one day...we shall see what lies ahead.

Last week as we all went up for communion at church on All Saints Day, a woman that we have not seen in a while was behind me and whispered in my ear, "how does it feel to be a part of a miracle?" I responded, "awesome". It is awesome. There really are not words to express it. Sometimes I almost can't believe what has happened in the past 22 months. Everytime I look at Max, I smile. I am so proud of him and really, in awe of him. He is a champ, a survivor, an inspiration. This journey has taught us how to live, how to love, how to be really, really happy and fulfilled. I am beyond grateful for the blessings that we have and for every moment that I have to spend with my family.

More to come soon...

Peace and love,
Kristi (and Matt, Max, Alex, Ellee and Spud)

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