Tuesday, December 22, 2009

Day +265: An Exciting Week...With A Few Bumps!

It's day +265 on Max's post-BMT journey and we have just arrived home from a wonderfully fun evening with the Meyer family. During the holiday season, we all traditionally take a family trip downtown to see the cool train display that Duke Energy has and then go visit Santa at the downtown mall. However, this year, because of Max's continued isolation restrictions, we couldn't take our usual trip downtown so, we came up with an alternative. We all met up at Molly and Jim's house in West Chester (Matt's sister) and had a very special surprise visitor - Santa! Ellee couldn't believe her eyes and literally ran across the room to jump into his arms and give him a big hug, while asking at the same time, "Where's my bumble bee for Christmas?" You see, she is in love with bumble bees and has been asking Santa for one for the last few weeks. Obviously, he wasn't able to produce a bumble bee from his sack so, he presented her with a cute little teddy bear which she loves. The boys all enjoyed his visit too. Each of them sat on his lap and told him what they wanted for Christmas. We are all feeling like this just might be the last year of the "magic" for many of them as they have all voiced some skepticism (except for Alex, thankfully) so, it was great to get to capture those moments one more time.

After Santas visit and pizza, we all piled in the minivans and headed to Sharon Woods Park for their Holiday in Lights display. You just drive through a bunch of lighted displays in the woods while listening to Christmas tunes. We all enjoyed it. Overall, the alternative plans proved to be a success! All three of our little munchkins are currently tucked into their beds, fast asleep, with visions of sugarplums dancing in their heads!

I decided to stay up and blog as the next few days will likely be busy and I really wanted to give everybody a quick update and wish you all a Merry Christmas! We had some fabulous news last week with regard to Max's progress, once again. His immune system testing that they had drawn and sent to the labs about a month ago came back good enough for him to stop all the profilactic meds he was taking! So, we are now down to just one medicine twice a day - his Cyclosporine (for continued immune suppression the whole first year)! HUGE progress! We were all thrilled and did several happy dances that day!

Unfortunately, we have had a few minor bumps the past few days with Max and are headed back down to the hospital in the morning for a blood draw to check his Cyclosporine level - the second one of the week, unfortunately. Last Friday at his regular monthly Day Hospital visit, his Cyclosporine level was very low and they attributed it to two things - the stoppage of his other meds and a change in the brand of Cyclosporine that he is taking. When I went to refill his Cyclosporine last week at Children's, I found out that they have been covering our costs at their pharmacy this entire time as our insurance apparently doesn't cover their pharmacy for some reason. Unbelieveable that they have been doing this and we didn't even know it - shows what an amazing organization Cincinnati Children's is!!! Anyhow, we had to switch now to a pharmacy that will be covered (at least partially) and when we did that, they gave us a generic brand of Cyclosporine and ultimately ended up affecting the level of the drug in his bloodstream, a very important piece of his recovery. So, the doctors increased his dosage last Friday and we headed back down on Monday to have his level checked, only to learn later that day that it had further decreased! In an effort to get it back to where we need it to be to prevent graft vs. host disease and other potential complications for Max, we bought enough of the non-generic drug from the hospital to get Max through until Kroger (the other pharmacy) can get enough of it themselves. Oh, the little things that you never think would amount to anything!!! We're getting the level checked again tomorrow morning and hope it will be back where we need it so that we are back on track with this medicine again and Max doesn't have to get any more sticks this week (or next for that matter)!

Besides that, Max has two small styes in his right eye which they are treating and seem to be clearing just fine - just more prescriptions to chase down this week! We did have another rather large bump late last week. Ellee caught the stomach bug that is going around on Wednesday night and was up all night with yucky stuff coming out both ends. Despite my best efforts to protect myself from it, I ended up with it Thursday night and lost another night of sleep trying to get through it myself! It took me about a day and a half to recover from it but, thank God, it stopped with me and has not gotten any of the boys yet, including Matt! We were a bit freaked out, to say the least, because Max may have to be admitted for a bit if he happens to catch it. I took Ellee to get her hair cut last Monday at a local kids hair salon and, despite my best efforts to keep her hands clean, the little bug got her and eventually me too! Ugh - not fun. But, I told myself that it is hopefully over for me this season, at least! Now I'll be available to clean up anyone elses puke and other stuff if it happens to rear it's ugly head again around here!!!

The last week has been busy medically once again and it reminds us that, although Max has made tremendous progress which we are so grateful for, he remains in a somewhat precarious state. The wrong germ could still send us back to the hospital, even just for a day or two stay, and that would be quite disruptive to the routine we have now developed. We just continue to tell ourselves to go one day at a time, be grateful for how well Max has done thus far, and take things as they come...live in the moment. No better time than Christmas-time with three young ones to do that!

We are all greatly looking forward to the next few days. We will be spending Christmas Eve at Gaga's house (Matt's mom), celebrating with the entire Meyer family. I'll be heading down to the hospital yet again this week that afternoon but, for a more enjoyable reason this time. I'm meeting the wonderful caterer there with my parents at 4:30 to set up a yummy, home-style dinner for the families of the patients on A5, courtesy of Max's Meals. We do have a couple of BMT friends down there inpatient right now that I am hoping to hug while I am down there. I know how tough it will be to be in that place at Christmas-time and I'm so grateful that Max's Meals will be able to provide just a tiny bit of comfort to them at this time. I am certain that the meal will be much better than what the cafeteria down there serves and I know how nice it felt when we were there and someone brought even just a coffee cake in to let you know they were thinking of you. Thanks, again to all of you that have already supported Max's Meals! Great things are happening already!

On Christmas morning, my parents and Matt's parents usually come here to see the kiddos open their gifts. Of course, that is a joyous occasion! I am already losing sleep with excitement over seeing their reactions! After that, my sister and her family and my brother will join us for brunch. I always make the traditional egg casserole that my Grandma made for us when I was a kid and having it on Christmas at our house has become our new family tradition. Later in the afternoon, we'll head to my parents to celebrate with my family. It will make for a couple of long and tiring, but cozy and memorable days.

Saturday (the 26th) is also an extremely special day around the Meyer house - it is Max's 8th birthday!!! Most of our families will be travelling to visit other family members that day so, we are postponing his birthday celebration this year to a later date. However, we are working on trying to come up with something special for us to do as a family. Max would really like to go sled riding but, with very little to no snow around Cincy right now, that doesn't look too good (we did have a small bit of snow last weekend and enjoyed making a family of snow men in our front yard)! We are thinking of trying out the tubing at Perfect North Slopes but, are trying to decide if it's too many people for Max to be around. I'm thinking with the 30 degree weather outside and his mask on, it might be safe but, we'll see. We'll let you know next week what exciting thing we end up doing!

We could not be more grateful for the opportunity to take part in these celebrations with our families this year. We have thought back many times lately to this time last year - Max's bruises had just started appearing and we were wondering about them but, really not overly concerned, just thinking they were somewhat typical for a 6/7 year old, active boy. We had no idea how our lives would be forever changed in just a few short weeks. Our world was absolutely turned upside down and our previous confidence in life was shaken to the core. We endured some really tough times with Max - IVs, transfusions, CT scans, x-rays, EKGs, a pic line, a central line, chemo, surgeries...things a parent would never, ever want to see their child go through. But, we feel like we have come out on top. Max is winning this battle against Aplastic Anemia, thanks to many, many blessings we have received: Ellee and her fabulous marrow; Alex and his never-ending commitment and friendship; our families and their constant love and care; our entire community and their unending support; the amazing hospital just 20 minutes from our doorstep; the gifted medical staff we have worked with...the list could go on for hours and I've already written too much! Good things are coming out of this experience. We have learned so much about life and what is important, valuable lessons we will all take with us forever. Spend time with those you love and care about and live in the moment - you never know what tomorrow will bring. Focus on that and the rest will just fall into place.

We believe that our family's story is one of hope and inspiration and shows that miracles really do happen here on earth. At Christmas-time, we want to thank all of you for your continued support and loving care. We hope you have a very, very "Marrow"y Christmas!

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

7 comments:

  1. Merry Christmas...God Bless all of you..It has been a year you will always remember..a year we have all traveled with you..we learned so many things by traveling with you..Praying does work.. remembering to cherish our families & friends every day..

    Love
    Carolynn Bob Bill and Megan..and all of your new Oklahoma Friends..Tell Max we are going to a Thunder Game Saturday...then back home to Cincinnati & Baltimore.

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  2. Merry Christmas Meyer family and a happy and healthy 2010!! Love to all, Regan family

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  3. From our family to yours, we wish you a very Merry Christmas.

    Thank you so much for the wonderful Christmas Eve dinner, it was so appreciated. It helped make it feel like Christmas Eve and not just another day in the hospital.

    Love your BMT family,
    The Martin's

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  4. Thank you so much for the absolutely delicious meal that you and your family and friends catered in. It was wonderful and we appreciated it so much! It was so good seeing you and being able to give you a great big HUG!!!!!
    I hope that you had a wonderful Christmas and I hope that Max has a wonderful Birthday today. Happy Birthday Max!!!

    Blessings to you and your family!!!
    So glad to hear that Max is doing sooo well!!! So happy for you and your family. We love to hear of the success stories!!!!

    Love,
    Kathy, Dean, Ethan and Family

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  5. Great update! Here's to a happy and healthy 2010!

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