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)

Monday, December 14, 2009

Day +257: Feeling More and More Normal!

It's day +257 of Max's post-BMT marathon and things remain good...thank God! We have been enjoying life away from the hospital for over 10 days now and loving it! We have not been up to A5 (the Hem/Oc and BMT floor) for over 3 weeks, something we have not experienced since this ordeal began last January 12th! It feels GREAT! We are loving being closer and closer to "normal" again! At times it's a bit scary, not seeing a CBC (blood levels) from Max for that long feels a little bit like driving without knowing where you are going but, we are getting more and more used to it all the time. Like I have said before, getting further and further away from A5 and Children's Hospital (at least in the capacity of having Max as a patient there) is the goal after all!

So, life is good. We are greatly enjoying the simple things. I knew you would all like the pictures in this post of the kids just being the kids! Bathing together again - YIPPEE!!! Dressing in their Bengals gear to root on the team together in front of the Christmas tree - YIPPEE!!! And I knew you all would love the picture of Spud cuddling on the couch with the boys. He has really become a part of our pack - we all love him and are enjoying him more and more each day. Of course, he continues to challenge us regularly with his "puppiness" but, he is calming down little by little and learning lots all the time about what is acceptable behavior around here. My sister in law, Monica, told me last week that I should share a couple of funny episodes that we have had with Spud for all of you, just to give you a good laugh. So, here goes...

As if we don't have enough craziness around here with three little kiddos, last week Spud decided to help himself to the Christmas tree ornaments several different times. He would just casually walk over to the tree, sniff around and, when no one was watching, pull off an ornament or two and sneak off somewhere to chew on them! Needless to say, I now have the tree blocked off so that he can't continue this and ruin all our low hanging ornaments! To top that little trick, however, he managed to get a hold of a dirty diaper of Ellee's last week and run around the backyard with it, with me chasing him all over, trying not to gag! After a half hour of chasing him around in the 20 degree weather, I finally had to give up. When he finally left it alone, I made him stay outside in the freezing cold for about two hours to "degermify" and then I wiped him down, top to bottom with Clorox wipes and made him drink a whole bowl of water to clear out his mouth! Disgusting, to say the least! Needless to say, I have moved the diaper disposal can to a place where he can't get anywhere near it! I am finally getting smart and puppy proofing this house even more than I already did. It certainly makes my life with Spudder-Dudder a lot easier!

Despite all these little incidents, Spud has definitely worked his way into all of our hearts and we are willing to put up with the extra chaos for him. He was neutered about three weeks ago and has definitely settled down a bit from that too so, we are making progress toward the end of puppy-hood, slowly but surely.

Beyond all that, we have really settled into some little routines around here. Max has tutoring at least four mornings a week, sometimes five and is Skyping three to five times a week with his class too. We are continuing to work on the best times and activities to Skype as it can be challenging for him to hear and follow along at times but, overall, it has been wonderful to have him connected like that. Alex is beginning to gear up for his return to school on January 5th. I have talked to his teacher and we have come up with a few things to help with the transition. Hopefully it will go smoothly and he will really enjoy it. I know it will be good for him to have some time with kids his age again and really to have some time away from his big brother. Max tends to be a bit controlling of little Alex so, being able to make some decisions on his own will be good for him again! Ellee is keeping us all laughing still, all the time. She is definitely exerting her two year old independence these days and showing us her personality more and more all the time. She loves to read books, sing and dance and spends most of her time looking at books or watching a couple of favorite videos she has of kids singing children's songs. She knows all the words and sings right along with them. She has already picked up a couple of Christmas songs, Rudolph and Frosty and her new favorite dance is the Hokey Pokey. She is a total joy!

We definitely have moments of frustration and boredom around here but, overall we have found ways to keep busy here at home and have enjoyed our extra time to just hang out together. I still love that I have the time to sit down and play a board game with the kids, to take a walk together each day with Spud or to read books together in front of the Christmas tree. This is something that I don't want to lose as we transition back to reality this spring so, I am going to make it a priority to find this time still, despite the craziness of life in the real world.

I wanted to also take the opportunity to thank my mom's good friend, Carolyn Maffeo and her nephew, Wilson, for helping Max get a very special surprise a few weeks ago from one of his favorite NBA players, Kevin Durant. Wilson works for the Oklahoma Thunder and Max and Carolyn had discussed this a few months ago. Max had told Carolyn about Kevin Durant and how much he liked him and thought he was just an incredible player. So, Carolyn talked to Wilson about Max, who in turn talked to Kevin and, low and behold, Carolyn showed up at our house a few weeks ago with an amazing pair of Kevin Durant's specially made Nikes - size 18!!!!!!! Max LOVES them and proudly shows them to everyone who visits us. You can see them on Max's little feet in the picture. We are hopeful that one day he will actually grow into them and wear them in one of his NBA games! ;) Thank you so much Carolyn, Wilson and Kevin!!! We have some more thank-you's coming your way too!

I am thrilled to report that Max's Meals is off to a fantastic start! We have gotten a wonderful caterer and friend of my mom's to volunteer to provide a Christmas Eve meal to all of A5 down at the Hospital! We could not be happier about this and are really looking forward to helping out with the dinner on Christmas Eve. It is like a dream come true for me that this is becoming a reality. I have wanted to do something since we were inpatient and I learned of the struggles so many families have down there so, the fact that it is going to happen and that we are going to be able to begin to give back already is just the greatest gift I could ever receive! The hospital was equally excited and is hopeful that we will be able to provide meals on an ongoing basis. They know how much they are appreciated by the families and how much it means to these people just to know that someone is thinking of them. I am beginning to try to think of ways to raise some substantial funds for Max's Meals through grants or fundraisers but, in the meantime, I would LOVE any support that any of you would like to provide through financial donations. You can send me a check made out to Max's Meals or give a donation at any Fifth Third bank here in Cincinnati. Thank you so much to those of you that have already supported our new adventure! We are looking forward to posting more and more good news about the success of Max's Meals!

As you can tell from the post, things around the Meyer household are good...really good. We continue to pray daily for Max's healing and ask for good health, strength and happiness for all of us. We definitely feel like our prayers are being answered and we are eternally grateful for that. Matt and I have said several times lately that we just cannot believe or underestimate how blessed we have been throughout this adventure. We are coming up on a year from when it all began now (Jan. 12, 2009) and it seems hard to believe that it has been that long. As we look at pictures from last Christmas, we get the chills, realizing that we had no idea what lay ahead of us. I think that those pictures will always be good reminders of what can be in life and how important it is to live in the moment. You just never know what lies ahead. We are extremely grateful that our journey has gone as smoothly as it has and that we have witnessed such a miracle in our lifetime.

Many of our BMT friends continue to have difficult struggles and challenges. We ask for your continued thoughts and prayers for Ethan (http://www.caringbridge.org/visit/ethanhenry), Preston (http://www.caringbridge.org/visit/prestonsnead), Brayton (http://www.caringbridge.org/visit/braytonmartin) and Matthew (https://www.carepages.com/carepages/babyandrewakin). We know how difficult this journey is and we also know how helpful and comforting it is to know that people are thinking of and praying for you...just like all of you have done for us for all these months.

Thanks for your continued support and love. More soon...

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

Thursday, December 3, 2009

Day + 246: Line Free and the Launch of Max's Meals!

Today is day +246 and we have spent the day celebrating Max's successful line removal surgery yesterday. His central line is gone and we are all breathing a sigh of relief! For 9 1/2 months, we cleaned and flushed with heparin those two lines everyday, along with changing the dressing and caps once each week. For Max, it is an enormous liberation - no longer does he have two thick IV lines hanging out of his chest with all kinds of dressing protecting them and holding them to his body. As of tomorrow, he can shower and bathe like a normal person again, letting water drip down his whole body! For 9 1/2 months we have done modified bathing. Max would wear his shirt and stand in the tub or sit on the side while Matt or I washed him down with a washcloth, being careful not to get his central line or dressing wet at all. I can't wait to see him standing in a shower tomorrow with the water just running down his little body...and I'm sure he can't wait to feel that sensation again. Oh the little things we take so for granted! For me, the loss of the central line is a great relief too. I have been the primary caretaker of the line, cleaning and flushing it daily and changing the dressing and caps weekly. It was something we totally adjusted to and got used to doing but, it is not something that any of us will miss, by any means! For all of us, knowing that a potential source of infection is now removed from our Max is a great relief.

Overall the surgery went very smoothly for them to remove the line yesterday. As the doctor that did it and many of the nurses and anesthesiologists said to us multiple times yesterday, "this is a piece of cake compared with what Max has already been through." Thankfully, those words were true. Max did well with the anesthesia and is recovering very well with really just minimal soreness today. He's definitely a bit more tired than usual but, by tomorrow, I think he'll be ready for some basketball games in the basement with Alex again and some normal running around here at home.

The day was somewhat surprisingly exhausting and filled with some mixed emotions for Matt and I. Being in the Same Day Surgery area where Max had his central line put in and Ellee went through her bone marrow harvest was tougher than I thought it would be for us. It brought back a lot of memories and made us both realize again just how long and tough this journey has been. On top of that, it is never, ever easy to watch your child go under anesthesia! We have been there with Max four times this year now and with Ellee once and I cannot help but cry every single time it happens! It is terrifying. If you have never had to experience it, consider yourself very lucky! I would be thrilled if we never have to go through it again...ever! I think the most terrifying thing for me is that you are handing complete control over to these doctors and nurses, most of whom you hardly know, if at all. To add to that, not only are you not there to watch over your precious child but, your child is not even able to fend for themselves as they are completely asleep and unaware of what is happening to them. Talk about having to have trust!!! As always, Matt and I trusted not only the wonderful doctors and nurses at Children's yesterday but, we have also learned more and more through this journey to trust that God is watching over our kids and ourselves and is with them, especially in these moments of great need.

We are grateful once again to have yesterday behind us and to have Max line free and doing so well. We heard multiple times from the surgical team yesterday what a sweet and handsome boy he is. They were all complementing him on his hair and his beautiful eyes and we were commenting on how amazing his transformation through this process has been. He was quite the man in charge yesterday too. He actually told them how he wanted to be put to sleep for the surgery and where he wanted his IV placed. Thanks to the great folks at Children's, they took note of how much he has been through and obliged him with all his requests. That definitely made things go smoother, to say the least. There were several comments yesterday also about how wise beyond his years Max is as a result of his ordeal.

Besides the excitement of yesterday, things have been pretty quiet around here lately. We had a wonderful Thanksgiving weekend and really enjoyed the time we got to spend with our families. We now have the house all decorated for Christmas and the kids are enjoying all the trees and lights. On Monday evening, we all crammed in the minivan (including Spud) picked up my mom and dad and went for a drive for about an hour and a half to look at the lights. The boys couldn't wait to see them and I was excited for Ellee's reaction since this is really her first year to truly understand things. We had a ball riding around and checking out many "decked out" houses, as the boys called them while we ate ice cream and sang Christmas carols. We are definitely finding ways to enjoy the holidays this year, despite our continued protective isolation requirements for Max.

As we progress step by step and day by day through this journey, the light at the end of the tunnel is beginning to shine brighter and brighter. We are starting to see the future with Max as a survivor of this disease and it is becoming clearer and clearer that he will be able to return to the life he knew before, essentially. Sometimes I am struck as I watch Max, Alex and Ellee play together at what a miracle has unfolded before our eyes. I am just amazed that the birth of one little person, Ellee, is now sustaining two precious lives in this world. Her little marrow is working away in Max and giving him his life back.

As I have shared with all of you many times, we feel incredibly blessed with how well Max has done through this BMT journey. As a result of what he has been through, we have really had our eyes opened to the incredible suffering and challenge that so many families face. I am very anxious to be able to do something to alleviate some of this hardship but have been trying not to take too much on too soon so that I can focus on getting our family through this tough time. However, I am very, very happy to announce that today, I opened an account to begin one facet of "paying it forward". I am starting a little non-profit fund called "Max's Meals" to provide catered, home cooked meals to the parents and families in the bone marrow transplant and hematology/oncology units at Cincinnati Children's! One of the great needs that we saw while we were inpatient in the BMT unit is that many of the families are not from Cincinnati so, getting a home cooked meal is just about impossible. They end up eating hospital cafeteria food or restaurant take-outs for months at a time. At a time when they need comfort and healing care as much as possible, it is almost impossible for them to get it. Through "Max's Meals", we are hoping to provide healthy, home cooked food to the inpatient families in these two units as often as we can. We would have liked to cook our own meals and take them down there but, hospital policy requires that the meals be from a professionally, licensed caterer or restaurant and I'm not quite ready to take that on yet! So, I am ready to take donations to support this cause and am hoping to raise enough money here quickly to provide a holiday meal to both units this month! If you are interested in supporting "Max's Meals' you can write a check to Maxs Meals (the apostrophe wouldn't work on the account name for some reason) and mail it to me or you can give a donation at any Fifth Third Bank here in Cincinnati to the Maxs Meals fund. I know that the families will so appreciate this support and care! If you have any questions about this, please feel free to email me (kmmaemeyer@yahoo.com) or call me (513-474-7181).

I told you about a couple of our friends last week that have been going through tough times and wanted to let you know that Ethan and Preston are hanging in there. Ethan is still in ICU but is showing some improvement and making some positive progress. Preston will be having his surgery tomorrow to correct the issue with his liver. Please continue to keep both of these families in your prayers and I promise to keep you updated on their progress.

As we look back over the last 11 months, we realize what an amazing journey this has been and we are so grateful for Max's continued progress. We are spending more and more time looking forward to what life has to offer Max as a survivor of Aplastic Anemia. We are hopeful that after this "viral season" is over, with continued good progress from Max, we will be able to rejoin the "real world". We have missed out on a lot of fun this past 11 months and plan to spend a lot of time catching up as soon as we are able! Get ready for one big party and lots of blog posts about all the great times we are having! We will never forget all the love and support that all of you have shown us and continue to show us over these tough months. We are forever grateful for all of you!

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