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)

Wednesday, November 25, 2009

Day +238: SO MUCH To Be Thankful For

It's day +238 for Max and Thanksgiving Eve and we are feeling as grateful as ever! We had Max's regular bi-weekly visit to the Day Hospital last Friday and left on cloud 9 as we received one piece of good news after another! Dr. Davies and I had a great discussion about many things and it was decided that it is time for Max's central line to come out! This is a HUGE step in the right direction, to say the least! Max has a bit of apprehension about it because it does mean that he will have to get an IV when we are down there for lab draws of his blood and medication infusions...but, the other huge piece of good news is that we are now down to once a month visits to the Day Hospital!!! Thus, Max agreed that he could get through an IV once a month. We discussed it at length and Dr. Davies and our Nurse Practioner, Paula, were very helpful in explaining to him that they will provide us with numbing creme that we can apply before we leave home so that the areas they will use for the IV will be nice and numb and hopefully it will be much less painful as a result. I reminded him that he was getting IVs 4 or 5 times a week back in January and February when we began this journey so, having one once a month should be much easier for him to handle. Dr. Davies and I are both relieved at the thought of having the central line removed because at this point, it poses a large infection risk for Max which would be very serious and it just isn't worth the risk any longer. Max is scheduled to have the outpatient surgery next Wednesday, December 2nd at 2:35 pm. It should be a quick and easy procedure for them to remove the line but, since he will have to be put under for it, we would still appreciate any and all prayers and thoughts for Max at that time.

In addition to the line removal, they drew extra immune study labs on Max last Friday to determine if we can cut the profilactic meds that he remains on at this point (an antibiotic, antifungal and antiviral). We should know fairly soon and if we can cut them, it will put Max down to 1 med a day!!!!!! His immune suppression med, Cyclosporine, will continue for the entire first year but that would be all that is left. Dr. Davies has said in the past that Max could return to school and other activities, potentially, while still on the Cyclosporine. It goes without saying that one medicine and no central line will be serious progress in the very right direction!!!! Woo Hoo!!!

The additional good news that we received is that Alex can return to school in January! He was excited to hear this and we all agree, including Dr. Davies (this just shows how awesome she is...even thinking about Max's siblings all the time in this process) that this is important for Alex. We need to re-introduce him to reality as well and let him experience the life of a typical 5 year old again. I am certain that it is going to take some extra work and tender loving care to get him re-introduced and comfortable with school again, as it will have been almost a year since he has been there too. But, it will definitely be another great move in the very right direction for our whole family.

So, as I'm sure you can imagine, all of this positive news has been exhilarating! However, we have had more difficult news throughout our BMT family over the past week. Three of the families that we grew to know and love during our stay at Children's have experienced significant complications and grief this past week. Natalie Bradley, a beautiful senior from St. Ursula Academy here in town, passed away last Friday after a very intense and extremely difficult battle with leukemia. Only a month or so ago, things looked promising for this young lady. Her brother had been her bone marrow donor and she was considered to be in remission...only for the leukemia to return with a vengenance and ultimately take her life. Very, very devastating. Two of our dear friends whom we spent much time with in the BMT unit are also enduring difficult struggles. Little Ethan Alfred, a sweet 15 month old boy who received his life saving bone marrow transplant the day after Max and "lived" next door to us for weeks, is currently in the Pediatric Intensive Care Unit at Children's with serious breathing and bone issues. His mother, Kathy, has been by his side for over a year now throughout his journey, leaving her three other children back home in Minnesota, barely able to see them. It is heartbreaking and exhausting for her to see Ethan in this state now. She clings to the hope that remains for him to beat this current problem and go on to a full recovery and a life filled with promise. Finally, our dear friends, the Snead's, who's 7 year old son, Preston, has undergone both a liver transplant and a bone marrow transplant for HLH. They have determined that Preston has an aneurysm in his hepatic artery (main artery to the liver) that needs to be operated on as it is causing blockage of blood flow to the liver. This will tentatively be done next Wednesday and is a very risky procedure, the doctors have told them. Preston has been doing very well with his bone marrow transplant and feeling better and better everyday so, we are hopeful that he will also overcome this latest setback and go on to a promising and long life. Preston is one of the few other BMT kids that Max has actually had the chance to meet - although it was through the window in the door of his Day Hospital room. Max asks me about how he is doing every day and is sure to include him in our prayers every evening. Preston's mom, Jasey, and I look forward to the day when we can let "P" and Max play together like two 7 year olds should!

I share these stories with you for two reasons - to ask you for your thoughts and prayers for these families that we hold dear to our hearts and to help you to even further appreciate your blessings at this Thanksgiving time of year. Before we had to walk in these shoes, we had no idea of the kind of suffering and hardship that families were enduring; we had very little to no appreciation or recognition of the blessing of our family's good health. We will never, ever again take it for granted and will be sure to be forever grateful for good health. I hope that by sharing these stories and ours with all of you, it will make you ever more thankful for your blessings.

We have a very fun-filled Thanksgiving weekend ahead and we are greatly looking forward to it! We will spend lots of time with both the Meyer and the Sherwin families tomorrow, including Max's favorite Thanksgiving activity, the Turkey Bowl (a touch football game that all the Meyer boy cousins and dads play up at Turpin High School's official field). We are excited to decorate for Christmas on Friday and then have more family activities/parties planned on Saturday. The holidays will definitely be extra, extra special for all of us this year. We are so grateful that Max is doing as well as he is and that we can be with our families to celebrate these special times. Our thoughts will continuously be with our fellow BMT families that will not be so lucky.

We so appreciate your continued caring interest in Max and our family and your ongoing thoughts and prayers for all of us. They have made all the difference in keeping us strong and positive throughout this journey. I will update more next week to let you know how Max's line removal surgery goes and to keep you posted on our friend's progress.

More soon...


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

Wednesday, November 18, 2009

Day +231: Some Idols

It's day +231 for Max and all remains good around the Meyer homestead. Max continues to progress well through the BMT marathon and we continue to make it through our days of isolation here at home. We are finding ways everyday to get out a tiny bit. Usually we just head to a local park and take Spud for a walk. Recently, I decided that we would try out the playground again, as long as no other kids are there. We had a ball a couple of times last week on the playground at nearby Veterans Park. It was awesome to see Max and Alex chasing each other around, huge smiles on their faces, just loving being normal kids on a playground again! Ellee was something to see too. She has really never had the opportunity to play on a playground before....something I didn't realize until we were there last week. She was too young before Max got sick and really wasn't even walking yet. Since he was diagnosed last January, we have not been to a playground. So, she was in heaven! We must have gone down the slides 500 times the first day! We would reach the bottom together and she would immediately say, "I wanna do it again! Let's do it again!"

Max has begun ramping again with his bike and scooter, as you can see in the picture. As my neighbors can attest, this is a favorite activity for Max so, seeing him back out there flying over that ramp is fantastic!

The article about Skype was a hit with everyone. The reporter did an excellent job of writing it (I still have been unable to find a link for everybody that is out of town.) We are Skyping more and more all the time. We are now up to almost everyday. The only time we aren't doing it right now is on Friday since Max spends every other week down at the hospital still. He is enjoying it and definitely getting to know the kids in his class, as well as his teacher. My hat goes off to her - she has been teaching for 20+ years and had never used Skype before the first time with Max! Now she is finding ways to include him in lessons every day. It's wonderful!

I wanted to include a quick update on Matt too for everybody. He has gone through a couple of different tests and so far the doctor has not been able to determine what is causing his stomach discomfort. At this point, he was told to see a GI specialist if the pain returns. He has been eating very carefully and so far, he hasn't had another issue so, we are in "wait and see mode" for now. We'll keep you posted if anything changes. Thanks for your thoughts and caring words for Matt too!

A cool thing has happened a couple of times lately with Max and I wanted to share it with all of you. Just over a week ago, Matt was telling Max and Alex about the fact that Kareem Abdul-Jabbar (the famous basketball player) was diagnosed with Leukemia. Max knows that Leukemia is very similar to Aplastic Anemia so he immediately said, "Wow, kind of like me." It's amazing to see him light up when he realizes that other people, especially strong, successful athletes, can get really sick too. While he was upset for Kareem, he definitely finds some comfort in knowing that he is not alone in his struggle and that even people that are so tough can also be struck by life-threatening illness. The boys went on to discuss Kareem's situation and Max asked if he was going to need a bone marrow transplant. Matt said that he didn't think he was at this point and Max replied, "Good thing. I don't know how he'd fit in one of those beds!"

This conversation and Max's reaction reminded me of a time a few months ago when the boys learned that one of their idols, Lebron James, was being tested for cancer because of a growth in his cheek. Ultimately, Lebron was cleared but I must have heard Max talk about that situation a hundred times. He told his cousins, his grandparents, his aunts and uncles, the neighborhood kids as they passed on their bikes...everybody. I realize now what an impact that had on him to know that one of his sports idols might be seriously ill like he was.

Finally, just yesterday, Matt's cousin Drew found the following article on a kid at Princeton named Jordan Culbreath: http://sports.espn.go.com/espn/columns/story?columnist=forde_pat&id=4660411&sportCat=ncf Wow...this really hit home for all of us! To hear that he has been diagnosed with Aplastic Anemia, just like Max and how it has tremendously impacted his life was something for all of us to read about. It's an excellent article. I thought you would all enjoy it. Again, Max's eyes lit up when I told him about Jordan. Yet another idol to add to his list. He and Alex have talked about Jordan all day, even calling each other by his name as they played football with Spud today.

Reading about Jordan is somewhat difficult and upsetting, knowing how being diagnosed with Aplastic Anemia can be devastating but, it was also comforting in some way. Aplastic Anemia is very rare (1 in every 25,000 people in the US each year) which has been something that has made this journey difficult at times. We have felt quite alone many times along the way. It's been hard for people to understand what this disease is and what a BMT entails, etc. Reading about another kid that is struggling through this disease made us realize that we are not alone...other families are going through the same struggles.

As Max continues to progress through the BMT process and get better and better everyday, I am starting to ask myself more and more, "why did this happen?" Not so much for our sake as at this point, it really doesn't matter...but, more for the sake of others. I just often wonder whether it's something in our environment that triggers this disease, just as with cancer and other blood/marrow disorders. I'm beginning to learn more about ways to support research that is focused on finding answers to these types of questions. As I learn more, I'll be sure to pass it on so that you can take some action to support this type of thing as you are interested. One of my main goals with this blog is to "get the word out" about Aplastic Anemia and other devastating diseases that require BMTs. The more folks that know, the more support to help end these tragedies!

As difficult as this journey has been for us, I am absolutely humbled by the experiences that our fellow BMT families and friends are continuing to have. Essentially, nearly all of the families that we met while we were inpatient in the BMT unit are having significant struggles with their children's recoveries. They have been hospitalized post-BMT numerous times, some of them for weeks or even months at a time; they have undergone untold surgical procedures and other tests; they have suffered large setbacks including infections and broken bones from long-term steroid use; and, as I've told you before, some of them have endured the untimely deaths of their children. I continue to follow all of their stories, praying for them daily. It goes without saying that knowing these families and their struggles absolutely makes us appreciate the amazing blessings that have been bestowed upon us throughout this process and that continue to unfold themselves for us on a daily basis. I can't explain why we have been blessed in these ways. I can only be eternally grateful for them and offer my prayers and advocacy for those that are suffering. Thus, I'd like to ask you to include the following children and their families in your prayers: Matthew Akin, Ethan Alfred, Natalie Bradley, Brayton Martin, Preston Snead and Mitch Stone.

I find myself day dreaming about the future quite a bit lately. It is hard to imagine a day when this experience is just a part of our lives, something in the distant past, but that's what we live for every single day. We hope and pray that Max will fully recover and be cured of his disease, going on to live a long and wonderful life. I know that we will need to baby step back to reality, as we are far removed from it at the moment. And, I also know that being removed from reality has had its advantages. As tough as things can be around here on a daily basis, trying to keep everyone happy and entertained while essentially being stuck here at home, I try to take time everyday to realize how precious this time is...how precious every day is. This is the greatest lesson we have learned - live in the moment, appreciating those you love and making sure they know it.

More soon...

Peace and love,

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

Sunday, November 15, 2009

Day + 228: Max is Famous!!!

It's day +228 for Max and he is officially famous now! Check out page B6 of the Local Life section of the Cincinnati Enquirer this morning. I'm trying to find a link for those of you out of town and will hopefully have one to post soon. It's a great article and Max was smiles, ear to ear at seeing the picture and reading what they wrote. He is sure that Ocho Cinco is reading it right now (you do know that he does get the Enquirer, right?). :) Anyway, hope you enjoy the article. Max will be giving autographs from 1 - 3 this afternoon. :)

More soon...

Peace and love,

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

Sunday, November 8, 2009

Day +221: A Blob Invasion!

Today was day +221 for Max and all remains well. We have had a busy past few days so I thought I'd do an update tonight and let you all in on what's been going on.

We had a LOT of excitement on Wednesday afternoon when the Xavier University Blue Blob showed up in our front yard! The kids were quite surprised. Matt's Aunt Mary Ann brought them all new XU t-shirts so we had tricked them into putting them on before the Blob arrived, just telling them we wanted to take some pictures of them all together with their XU shirts on. They had looks of real shock on their faces as they came out the front door to see the Blob standing there! They all got to meet "it" individually and "it" presented Max with a special gift - a mini stuffed Blob. The kids then proceeded to play a great game of keep away with the Blob for about a half an hour. "It" has a really long tongue which Ellee got a big kick out of especially. She also did a couple of other really funny things. At one point, she went up to the Blob and touched "its" shoes, looked up at "it" and said, "I like your shoes." A few minutes later, she said, "I love the Blue Blob...Go Bengals!" We all got a good kick out of that! Overall, the kids had a wonderful visit with the Blob and it really brightened our day. About an hour after "it" left, Max said to me, "that was really cool having the Blob come here to visit!" Thanks, Mary Ann and the Blue Blob!

On Thursday afternoon, a reporter and photographer from the Cincinnati Enquirer came to the house to get info for their article on Max and the Skyping with his class. To my surprise, they were here for about an hour and a half! They observed Max on Skype with a classmate and then asked us lots of questions. We are hoping the article will show up in the paper soon. I'll be sure to post a link to it if I can, once it's published.

Friday was our scheduled visit to the Day Hospital for Max's bi-weekly medication infusion. It went well. Ellee's little marrow garden is blooming some good cells for Max and continues to grow and flourish within his little bones. His counts (white, red and platelets) have remained very stable for over two months now. While his white and red cells are still just below normal levels, his platelets have been outstanding at a higher than normal count! This has continued to be great news because Dr. Davies reminds me constantly that the platelets are the true indication of the engraftment. They are the last cells to come from the new marrow and the first to go if something is wrong so the fact that they have remained strong and steady has been continually comforting for Matt and I. Conversely, Max's engraftment percentage (the percent of cells being produced by Ellee's marrow vs. the small bit of his that remains) has waivered a bit over the past several weeks. He is currently at 92.8% again, where about 6 weeks ago he had been back up at 99%. The level of immune suppression medication in his body definitely seems to be linked with these fluctuations so, our Nurse Practitioner was going to follow up with Dr. Davies (who was stuck in an airport on Friday and unable to see us) to see if she wants to adjust anything as a result of his current decrease.

Other than that on Friday, we did discuss Alex's potential return to school with Dr. Joshi (one of the BMT outpatient docs that we have seen regularly) and our Nurse Practitioner, Paula. They had some reservations about Alex returning anytime soon, primarily due to the swine flu and some of the other germs that we have heard have been circulating at the preschool (ie chicken pox, strep, etc). They are going to talk about it with Dr. Davies and let me know her thoughts soon. We are trying to decide whether we should pay tuition again for Alex next semester or not. We would definitely like to send him for some part of this year as he will start Kindergarten in the fall and that will be a big change for him if he doesn't get to go to preschool at all this year. I am not at all concerned about him academically and really not even socially. It's more that I need him to be comfortable with being away from me and home again. I know it is going to be a rather large re-adjustment for him.

Saturday morning was busy too with shots all around! Spud had a trip to the vet for his last set of doggy vaccinations and then Matt, Alex, Ellee and I headed over to Norwood for our H1N1 shots. It went off without a hitch and we all got our stick. I must say that the Norwood Health Department deserves a round of applause for the way they handled the clinic. We were in and out of there within 10 minutes and the majority of the time was spent filling out the required release form. I don't know why every clinic in this country couldn't be run this way! They just took appointments for the number of vaccines they had and then we all showed up at our designated time, got them and went on our way. On the shot note, the hospital still does not have any doses for patients! They were barely able to offer the vaccine to all their employees last week. They don't know when they will get it for the patients yet and we are still anxious for it so that Max will have some level of protection within his own body...although we are extremely relieved that the four of us closest to him are on our way to being protected now. Alex and Ellee will need another shot in about a month (hopefully it will be easier to find by them) to round out their immunity to the virus but Matt and I should be all set in about a week to 10 days.

After that busy morning of shots (which no one liked, of course), we had a nice evening last night. Matt and Alex had seats on the floor for XU's exhibition game from a nice friend of ours at church that works for XU (thanks, Greg!). Of course they enjoyed the game and the wonderful view of the players. I didn't want Max to be disappointed that he wasn't able to go so, my mom and I planned a fun night for Max, as well as Ellee. My dad rented Indiana Jones for he and Max to have a special one-on-one movie night together. Since they are both high energy people and not much into sitting and watching entire movies, they fast forwarded to all the good parts and then played basketball in the basement which watching the UC football game. My mom and I took Ellee out to dinner and then to a local children's book store. She LOVED it! It was so cute to see her in the bookstore, enjoying just being somewhere different and all the new things to see. She was pulling books and toys off of shelves left and right. We came home with the Fancy Nancy Splendiferous Christmas book which she has enjoyed immensely today, as well as a few other books for the boys and some for all of us to read together. It was really nice to get out a bit and have a "girls night" of a different sort.

As you can see, the past few days have been busy and filled with fun and mainly good news. Unfortunately, we do have a couple of things causing us a bit of stress right now. Over the past three weeks, Matt has experienced some serious stomach pain three different times which has kept him up half the night, unable to sleep or get comfortable at all. After the second time it happened, I convinced him to go to the doctor and get it checked out. About a week ago, he had a cat scan as the doctor was concerned that maybe something was up with his appendix. However, his cat scan came back normal. Then, last Thursday night he experienced the same pain again with his stomach so, he went back to see the doctor on Friday. The doc now suspects that it may be gallbladder attacks so, he did some bloodwork on Friday and Matt is having an ultrasound tomorrow. We are actually hoping that they find some gallstones as we have learned that they will quickly remove the gallbladder then, which should stop the pain. If they don't, Matt may have to go through some additional testing to determine what is going on. We are hoping to know more tomorrow and promise to keep you all posted. We haven't put anything out on the blog about this yet because we don't want anyone to be alarmed or concerned. We are hoping and praying that it will all turn out to be relatively minor and be able to be rectified quickly and easily.

To add to the fun around here, our garage door opener broke on Friday so it won't go up and down at all without significant intervention (we can see that the spring is broken)! So, I am going to spend tomorrow morning on the phone getting quotes to have someone come out and replace/fix it. Fun! Just what I want to do right now.

Despite these issues, we are doing well overall. We have heard over and over again lately from people about how great Max is looking. People can see, just by looking at pictures of him on the blog, what we see everyday. He is getting better! His eyes have a sparkle and clarity in them again that was missing for some time. They are a beautiful shade of green and they just look gorgeous these days. His hair is adorable. The little curls and wave that came with it when it came back is so cute. We don't know if it will stay as Dr. Davies calls it "Cyclosporine hair" (the immune suppression med he's on) but, we'll take it while it's here...it's great! To add to his cute hair and sparkly eyes, his two top front teeth fell out about a month ago. His toothless grin is darling. We are so proud of him, it's unexplainable. Everytime I look at him, I feel pride for how he has handled himself in this very difficult time. I can hardly think of a time throughout this process when he wasn't smiling, laughing and making the best of things. He is an amazing kid. I often think that I cannot wait to see the kind of adult that he is going to be, given what an incredible person he is at 7 years old! Suffice it to say that I am proud of my little boy.

Of course, we couldn't be prouder of our other two as well. Matt and I have commented several times recently on how awesome the bond between Max and Alex has become. I don't know what they would have done without each other throughout this experience. Alex is absolutely devoted to his brother and the two of them have become inseperable. They sleep together, eat together, get dressed together, play everything together, even go to the bathroom together! Yesterday, Max wanted to play basketball in the morning and Alex had gone down with him to play. I overheard their conversation and heard Max remind Alex that he had to go get his shot soon. After a few minutes, Alex came upstairs and was moping around quite a bit. I quickly realized that he was very apprehensive, understandably, about the shot. Max would not play basketball without him and came upstairs to sit next to him and try to allay his fears. It was a parents dream to see the two of them interacting. Max was doing everything he could to try to make Alex feel better. He had even prayed the night before that the shots wouldn't hurt for all of us. Alex has been there every second for Max throughout this ordeal and Max knows it. He knows that Alex would do anything for him...anything. That's exactly the kind of brother that Alex is. The bond that has now formed between the two of them is priceless.

Ellee is our little miracle, as you all know. We felt very blessed just to have her in our lives before we even knew that she would save Max. She keeps all of us laughing and loving around here everyday. She is a big cuddler and kisser and is regularly heard saying, "come and snuggle me on the couch" to one of us. The boys love her and watch over her already. They treat her
with a special sweetness.
Spud is really fitting right in around here now too. He still has his wild puppy moments, of course, but overall he is finding his place here and bringing us lots of joy. The kids love to play ball with him and to pet him and cuddle with him when he gets a bit tired. One day last week, all three of them were petting him and Max said, "We love you Spuddy. You're the best dog ever."

Things are good around the Meyer house. Challenging, but good. The love is flowing. The bonds are deepening. Lots of good things are coming from this experience.

More soon...

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

Wednesday, November 4, 2009

Day +217: Shot Appointments! YIPPEE!

It's day +217 and I just wanted to put a quick update out to thank everybody for their awesome support and help in locating some vaccine for all of us! We got numerous calls and emails with different potential leads and have been able to get an appointment on Saturday with the Norwood Health Department for shots for Matt, Alex, Ellee and I! YIPPEE! I did a happy dance after getting off the phone with them! Never have I been so thrilled to be getting a shot! Never did I ever think I would rejoice at the idea of getting a vaccine! Even Max was smiling! I have HATED needles my whole life...now, I must say, I definitely realize their value and, while I can't say that I love them, I appreciate them tremendously!

Besides that great news, we had a fun day yesterday enjoying the beautiful, crisp fall weather here in Cincy. We went for another hike with Papi at the Nature Center at lunchtime and then came home and played outside with our old friend, Grave Digger (a battery powered monster truck that Max got for Christmas when he was 4). You can see from the picture that we have now figured out how to fit all three of them in for rides at once!

We are expecting some exciting visitors here today and tomorrow. The Blue Blob, one of Xavier University's mascots, is coming for a surprise visit this afternoon (shhhhhhh!). I know the kids will be thrilled. They LOVE XU basketball and normally attend several games each year with Matt. Unfortunately, Max will not be able to go this year so, Matt's Aunt Mary Ann who works at XU was able to secure a surprise visit from the Blob to let Max know that the team appreciates him cheering them on here at home. Tomorrow the Enquirer will be here to get some pics and info for their article. That should be exciting too! Friday we have our regular bi-weekly Day Hospital visit so, I'll write again soon and let you all in on the excitement of things around here - from Blobs to shots! Lots going on!

More soon...

Peace and love,

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

Monday, November 2, 2009

Day +215: Skate Parks, Halloween Fun and Still No Shots!

It's day +215 for Max and he continues to progress well through the lengthy BMT recovery process. I apologize for the lack of an update for almost two weeks now! As I'm sure you can imagine, things are crazy around here and I find myself unable to accomplish much of anything these days! I sit down to type up an update and get interrupted by some little person at least 5 times in the first 5 minutes so, it just becomes impossible! Anyhow, I'm glad to be finally getting around to it. This blog is a HUGE help for me and I have missed pouring out my thoughts in it for all of you to read. It is somewhat of a lifeline for me right now. Things have definitely gotten tougher again lately, just in a different way than they were before.

You've all heard me say that the swine flu has made things extra challenging for us before and that has not changed a bit. If anything, things have gotten more challenging lately, primarily as a result of H1N1 circulating around Cincinnati and Anderson Township. We have still been unable to obtain the vaccine for any of us. The hospital, as unbelieveable as this seems to everyone, still has only a very small amount and all of what they have is the live mist. They are still waiting on vaccine for the doctors and nurses, as many of them, including all of them that work on the Hematology/Oncology floor (the 5th floor where Max is treated) cannot take the live mist because they work with patients with compromised immune systems (like Max). They do not have any yet available for patients or their families. It's quite depressing and completely unbelieveable. Sorry to say it but, the government has really screwed this vaccine distribution up! They totally missed one of the highest risk populations around - kids in or being treated by hospitals!

I talked with Dr. Davies about this situation at our last visit with her (a week ago last Friday). She understands my frustration and appears equally as frustrated. She promised to let us know as soon as she knows that the vaccine is available at Children's. I explained that even though we are very isolated right now and have thus reduced our risk for contracting the virus, we are still no more than one layer removed from it. Matt has had it at his office; it has been in all of my nephew's classrooms; my neighbor’s kids have had it; I'm sure it's walking around in the grocery and other stores that I visit here and there; etc. I told her that I felt it was a matter of time before one of us caught it so the sooner we can get protected, the better. I asked that if we were able to get the vaccine somewhere else, would that be alright with her. She recommended that Matt, Alex, Ellee and I get it wherever we can but that Max wait to get it from them. She does not feel that Max is going to have a “perfect response” to the vaccine, due to his suppressed immune system and thus, it is more urgent that the rest of us get it as soon as we can and safer for Max to just go there to get it where they known how careful to be about germs and I know how to get him in and out safely.

I have heard about several vaccine clinics here in town but, they have been flooded with people and I have not wanted to venture out with Alex and Ellee to stand in line around numerous people and their germs! We are living every minute of our lives in germ-a-phobia…the last thing I want to do is go running around town, exposing them to countless people, trying to hunt down this darn shot! Not to mention that technically, none of us meet the “high priority” list for the vaccine anyway. We are not pregnant, between 6 and 24 years of age or caring for infants less than 6 months. In addition, I can’t get a hold of anyone on a phone at these clinics to find out if they have the inject able version of the vaccine either, since we can’t take the live virus mist version at all.

Alright - enough venting again! I’m not one to sit by and let situations like this get the best of me. Unfortunately, with the three little ones and Max’s compromised immune system, I just feel at a loss for how to solve this issue. Thus, I am just trying to remain patient and calm. I keep thinking that the hospital just has to get it soon…they just have to! It’s crazy.

So, you can probably see why things are a bit extra challenging again now, just in a different way, as I said earlier. Max’s health is really good at the moment, which is hugely wonderful…we just want to keep it that way! That’s what makes this time so much more difficult again. We have entered into “viral season”, as Dr. Davies calls it and without the swine flu vaccine, we are even more hostages in our own home. We are scared to venture out. I went out to run a quick errand yesterday and as I was standing in line to pay, the little girl and her mom behind me started coughing. I tried holding my breath as long as I could and just stared straight ahead, hoping that no germs would get into my mouth or nose! On Halloween night, a group of high school girls came to our front porch Trick or Treating and one of them coughed. As soon as they left, I went in and grabbed a mask and spent the rest of the night handing out candy with it on! I’m sure I scared many of the kids but, I really had no choice. I just can’t let this germ get us!

Speaking of Halloween, the kids had a great time. It was different than usual but they still enjoyed it. Max did not Trick or Treat. Dr. Davies requested that he only go to a couple of houses for a short amount of time but, he was not really interested this year anyhow so, he stayed in with me and watched through the glass door as I handed out the candy. He was very comfy, as you can see in the picture. Spud joined him on his comfy bean bag for a majority of the time and kept him company! Alex and Ellee went out with Matt for about 45 minutes and rounded up a big bunch of treats. Alex was the wild basketball player, Chris Anderson and Ellee was a bumblebee. On their return home, Ellee told me, “I went for a walk with my daddy and I hold his hand. I got lots of canny - lollipops, bubble gums and chocolates. I’m gonna eat it!” She had a ball and has not stopped talking about all the “canny” since! After Trick or Treating, all the Meyer clan came over for a little Halloween party. They definitely made our night. We enjoyed just hanging out and watching the kids have fun together.

Beyond all that, we did have another great adventure last week at Beech Acres Park. Last Wednesday we headed over to Beech Acres to check out Max’s favorite outdoor skate park and take Spud for a walk. We were lucky to hit it at a time when no one was in the skate park so, Max got out there on his scooter for the first time in probably almost a year! He LOVED it! He told me that it felt so good to him to be able to do that again. He just picked up right where he left off. It looked like he had never stopped. I was a little nervous, to say the least - watching him cruise up and down concrete ramps again was a little unnerving. But, I was thrilled to see him doing something that he loved again and enjoying it. I did pause for a minute to realize, again, what a miracle this has all been. How unexpected and yet, how amazing this journey has been this past 10 months. Knowing what he has been through and yet, seeing him out there in that skate park, on his little scooter, cruising up and down those ramps like nothing ever happened, as brave and fearless as ever, was something inspiring and incredible. We went back again on Friday and he had a great time…this time we took his bike too. He is hoping to go back again tomorrow!

Max is Skyping with his class regularly now and enjoying it. I just got a call from the Cincinnati Enquirer a bit ago and they are going to come out on Thursday while he is Skyping to talk to us and take some photos for an article they are going to do about Max and the class interaction through Skype. Pretty exciting! Max smiled ear to ear when I told him they were coming.

Life is definitely different than it was a year ago at this time. I’m not working; Max and Alex are not physically attending school; Ellee is walking and talking like crazy; Max has a central line and appointments at the Hem/Oc Day Hospital every other week; we have a crazy new puppy running around the house, tearing things up; we are not thinking of moving anymore, like we were last year; and our worries are totally different. Life is different - simpler, yet crazier and somehow, more stressful at times. I am here at home with my three little ones 95% of the time, trying to find ways to keep everybody happy and entertained. We are definitely getting creative and, at times, a bit lonely and down in the dumps. Whenever that happens, we do our best to focus on how different next year will be from right now. That makes me realize and remember that I need to cherish these moments and appreciate all this time we have to hang out together. Before we know it, everybody will be back to school and running around with their friends and I know I will somehow long for these days.

The most important thing we have learned from this experience is that all that really matters is the relationships you have in your life and the love that you share. Without a doubt, we are building incredibly strong relationships amongst our family through this time together. For that, we are forever grateful.

More soon…

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

Wednesday, October 21, 2009

Day +203: All Is Well

It's day +203 for Max and things continue to go well for him, health-wise. We have not needed to make any additional trips down to the hospital for any concerns since our last regularly scheduled appointment 10 days ago, which is always a good thing. Overall, Max seems to feel pretty good most of the time. He does still tire much more easily than he would have before, tends to be pale with dark circles under his eyes, and gets stomach and head aches occasionally. Other than those things, his central line and the 5 medicines that he still takes three times a day, you would almost not even know what he went through just 203 days ago! He is doing well and we are extremely grateful for that!

We have settled into a pretty good routine around here too. Max's tutor comes to the house Monday through Thursday mornings and spends between an hour and hour and a half each time with him (5 hours per week). Max really likes her and is progressing very well with the home schooling. He is staying right on track with his second grade class so far. We have also begun a really cool thing with his class - on Monday morning we Skype (video chat through the computer) with them for their "morning meeting" and on Thursday afternoons, we Skype with them for "writing workshop" where Max gets paired with a partner to write together for an hour or so. It's been an awesome way for him to stay a little bit connected with his class and he seems to really be enjoying it. He has several buddies from last year in his classroom so, they have all been excited to see each other and get a little chance to catch up. We plan to do even more Skyping with them and work up to having Max in a reading group with fellow class members. Isn't technology amazing?!?

Alex is also progressing well through his last year of pre-school, even though it is currently happening here at home! His teacher and I have worked out a great system. She sends work and activities home on Monday for the week and I work through them with Alex and then send them back to her at the end of the week. So far Alex has learned lots about the letters A thru E and the numbers 1 thru 4. He really enjoys learning and works hard on his little assignments. I can just tell how badly he wants to keep up with his older brother. He's a great worker.

Ellee loves to color or play with Playdoh while the boys do their school work. She is famous for looking at me while she is doing this and saying, "I'm makin' a mess!" We end up with about 100 markers, crayons and chunks of Playdoh all over the floor but, it keeps her busy for a bit so that I can work with the boys. She got a new kitchen from my Aunt Laurie's company, Little Tikes, for her birthday and she absolutely loves playing with it. It's in the basement so, several times a day she says, "I wanna go see my kitchen!" and we venture into the basement to have her bake us some cookies and cupcakes. Speaking of her birthday, it is officially this Saturday and she is very excited about it. She keeps saying to people, "My birthdays coming up." and when you ask her how old she is going to be, she replies, "two and terrible." I couldn't believe my ears when she said it the first time, I don't know where she picked it up! So cute!

Besides all that, we spend LOTS of time playing and walking our little buddy, Spud. He is shaping up to be a pretty good little dog so far, although he still has plenty of crazy puppy moments that drive us all a bit nuts! They are all worth it though, as he really motivates us to get up and out of the house, even when it's cold or rainy. I know that is super valuable because we all can tend to get a bit depressed if we sit around inside here too much. Having him to keep us moving and getting fresh air everyday is really important...I think it helps us keep our spirits up.

We have also been able to keep seeing our cousins, Will and Ben (Monica's kids), at least once a week generally and our cousins, Andrew and Jacob every other week or so. The boys LOVE being able to play with them and would be happy to see them everyday but, they are busy with school and sports activities and we are also being extra careful about germs all the time. The darn H1N1 is circulating around both of their schools like crazy so we feel like we are all continuously dodging bullets! We hear regularly about more cases of it with friends and fellow classmates and it's freaking us all out, to say the least. We have all been hoping that the vaccine would make it here in time to spare all of us from the virus and give us some protection and it sounds like it is coming to their schools very soon but, in the meantime, we are having to hold our breath everyday that none of them come down with it. It has definitely added an element of extra challenge to this already tough situation with Max. I ask myself all the time, "why did this have to happen this year?!?"

I know I have no control over that and that we just have to be extra careful and get through this, at least until we can all get vaccinated. But, that has been the other part of the problem that has been so frustrating. I cannot get the vaccine for us (Matt, Max, Alex, Ellee and I) anywhere! It's somewhat unbelieveable but, the hospital does not yet have it, nor does our normal pediatrician. The schools seems to be getting it first, if you can believe that. So, I tried getting us all vaccinated through the school and that was not possible either, due to the restrictions the government has put in place for the school vaccination programs. I can't tell you how frustrating this has been. The hospital does not know when they are going to get them and basically can't tell me much at all. I was absolutely distraught last Friday after watching the local news and seeing seemingly healthy high school kids getting the H1N1 shots in one of the first rounds of school vaccinations around here. I realize that everyone has some level of risk in this situation but, no one can tell me that my son Max, having a bone marrow transplant 203 days ago is in better shape to fight that virus than a high school kid!!!!! I was extremely upset and angry and wanted to get this point across to the government that has put the priority list for dissemination of this vaccine into place so, I wrote a letter to Obama and his administration and sent it to him through his website last Friday. Everyday Max asks me if I have heard back from him - he knew I was upset about the situation and wrote to him. I have yet to hear from him. If anyone has any other ideas about how I can get this message out to the folks in charge of this vaccine, please let me know. Obviously, I am passionate about this and want the government to realize the mistake they have made here. I am hopeful that they care more about lives than economic impact and that is not what drove their priority list!

Now that I'm done venting...the H1N1 situation has made things much more difficult for us and it gets somewhat depressing at times. We were told at our last visit that we could go to the Zoo, just staying outside and away from other visitors, especially school groups. But, I am hesitant to go there right now with this new flu flying around town. I just keep thinking that once we get that vaccine, we will be so much more protected so we should wait. I am also waiting for that vaccine, as well as the regular seasonal flu which I also have not been able to find anywhere for Alex, to send him back to school. I want him to have that level of protection that those two vaccines can provide our family before he is around all those other kids again. These are just two examples of things that are "on hold" while we wait for this protection which hopefully show you how it can get you down. Our lives have already been so turned upside down. Not being able to get these vaccines is just making that worse right now and not allowing us the opportunity to even have a tiny bit more normalcy.

The outlook for Max's future remains promising. We feel that if we can get through this "viral season" well, as Dr. Davies called it, he may be on his way to a return to "normalcy". What continues to weigh heavy on my mind is what "normalcy" will be for us going forward. I think that with time, the concerns over Max's health will hopefully become less and less a part of our lives but, I know that they will never go away. This is not a process that "normal" people go through - I don't know anyone that is my age or my parents age, for that matter, and has had a bone marrow transplant, although I'm sure they're out there. We just can't be sure what the future holds for Max as a result of what he has gone through and I think that is the scary part. I tell myself that no one ever knows what the future holds but that reality is different for us now than it was before. As I've said before, our confidence has now been shaken like it never was prior to this experience. We now really know how fragile life is and how quickly it can all change and that definitely changes your perspective on things.

The other day, as I was taking a shower (usually one of the rare moments of quiet that I have in a day), I thought about Max's future wife for some reason. It's thoughts like this that I totally took for granted before that now make me freeze for a moment and pray that it will happen for him. I imagined the discussion that we will all have to have one day about the fact that he may not be able to have children of his own as a result of this BMT process. Then I imagined this beautiful young woman who is disappointed, yet accepting of that possibility and loves him despite it and how happy that Matt and I were that he had found her. These are the images that I continue to cling to...a future of happiness and endless potential, with all of this nothing but a distant miraculous memory!

More soon...

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

Monday, October 12, 2009

Day +194: The Tide is Turning

It's day +194 for our Maxer and we have just had a string of events and fabulous news that has made us feel like the tide is finally beginning to turn for all of us! Last Friday we spent the day down at the Day Hospital for our regularly scheduled bi-weekly check-up and infusion of medications. We got to meet with Dr. Davies, Max's head doctor, which we hadn't been able to do in about 6 weeks. I had lots of questions saved up for her and every answer she gave us was so encouraging! She feels that Max's immune system is beginning to respond, based on a couple of different signs. This is obviously huge news and a wonderful sign that things are progressing well for Maxer. It also means that a couple of prior restrictions can be lifted, the largest of which is that Max no longer has to wear his mask when playing outside!!!! Max could not believe his ears when Dr. Davies told us this...he fell back in his bed, pretending to faint and then did a little happy dance. She loved it and got a huge kick out of his reaction. We only need to wear the mask when going to and from the fifth floor at the hospital and in any other situation where Matt or I deem it may be appropriate (obviously if he is going to be around more than one or two people outside, we will probably have him put it on). She said that we still need to be careful and essentially keep to ourselves throughout this viral season (with the exception of a few clean visitors) but that she really felt that Max's immune system was giving him some layer of protection at this point. She believed this so strongly that she shocked me by saying that she wanted him to get both the seasonal and H1N1 flu vaccines! I couldn't believe my ears! She explained that she believed his system would respond at least somewhat to the vaccines and, as a result, give him some level of protection against these viruses. If it didn't, there was no harm done because the virus is not live and it would essentially just amount to the wasting of a shot. So, Max got a seasonal flu shot last Friday while we were at the hospital and will get the H1N1 shot once it is available! Wow! On top of all this, we discussed the possiblity of a return to school sometime post-viral season if all remains well and a trip to Disney with Make A Wish in April or May!!! We also discussed the removal of the central line briefly and she hopes we might be able to get it out before Christmas.

Obviously, all of this news was so elating! I just kept looking at my little boy and thinking, "he is getting better...yes, he is getting better!" It was an amazing feeling for all of us. The first thing Max did once we reached home was to get out of the car and run around the yard without his mask on. It may seem like such a small thing but for Max, this is incredibly liberating. He has endured those darn things for 10 months now outside and I think it feels so great to just be able to open up the door and walk outside! I can tell you for us it feels great too - we can finally open our windows here at home and drive with Max in the car with the windows open! Woo, hoo! We are living big time now!
Needless to say, we were on cloud nine Friday night. We all were just reveling in the excited emotions that progress brings! To top off these elated feelings, Matt, Alex, Ellee and I joined over 100 people on our team, Max's Mighty Mob, at the Cincinnati Walks for Kids event for Children's Hospital on Saturday morning. It was incredible. Everywhere we turned there were more supporters of Max and our family, wearing their "Max's Mighty Mob" t-shirts with pride and marching along with us in thanksgiving and support of the miracle workers at Children's. We could not have asked for a more uplifting and positive event. It was amazing to see all of the people that we know have been behind us for all these months there in person and to be able to hug them and tell them thanks. We even had family members and friends that traveled from a great distance to walk with us. My Aunt Annie and Uncle Garry and cousins, Tim, Bill, Brighty and Molly came all the way from Cleveland along with a couple of their wives and friends. A very special friend of mine from Michigan State, Karen Toovalian, brought her husband, Brian and their three kids, Lia, Stefanie and Paul (7, 5 and 2) all the way 6 1/2 hours from Michigan to join us too! Not only was it touching to have so many friends and family members from Cincy there but it was something extra special to know that these folks made such a HUGE effort to come down here to join us and support us in this way.

We ended up having one of the largest teams of walkers and raising over $10,000 for Children's. It was a day to remember. The only thing that can top it is to have Max at the head of the pack, leading his Mighty Mob next year and for many, many years to follow! We definitely plan to make this an annual family event and hope to recruit more and more Mob members and more funds for Children's every year so, hold on to your t-shirts if you have them!

To top off this string of incredible days, we celebrated Alex's upcoming fifth birthday (tomorrow, 10/13) and Ellee's upcoming 2nd birthday (10/24), along with cousin Willie's 8th birthday and Uncle Mark's ?? birthday last evening here with Matt's family. The kids had a blast playing an official baseball game with the dads on the diamond down the street and then came back here for a special "Fancy Nancy" dinner in honor of Ellee's favorite storybook character. Check out the pics from the walk and the birthday bash both in this post and in the Snapfish Fall Photos link on the side of the Blog home page. We got some great shots! We have spent most of today playing with Alex and Ellee's new gifts and assembling some of them (lucky me). It's been nice to have some new toys in the house - definitely lots of excitement!

We started obedience training with Spud last week and it seems to be really helping. He is settling in around here and beginning to listen to me a bit better! :) He still has his wild puppy moments but, we are all absolutely in love with the little guy and enjoying him the majority of the time. He is growing like a weed - must be at least 3 or 4 times bigger than he was when we got him. The vet says that he will likely far surpass the 40 pounds that the rescue organization thought he might be! Whoops! All the more reason for that obedience training!

All in all, things are great. The light at the end of the tunnel keeps getting brighter and brighter all the time...sometimes it takes big leaps in brightness like it did last Friday. We are so grateful for Max's steady, positive progress and hopeful that time, continued care and vigilance will soon find him ready for the "real world" again. We are struck continuously by the miracle that has occurred within our lives. Many times it is hard for us to really believe all that has transpired in this relatively short amount of time. Just 10 months ago we had three seemingly healthy, beautiful children. Things changed overnight and took our breaths away. We were stunned and quickly called to action to save our child's life. Now, as things begin to slow down again and we are able to reflect on all that has happened, we feel so blessed, over and over again. We want to use this journey to make a difference in people's lives and to make the world even just a little bit better as a result of what Max has had to endure. We cannot think of a better way to return our blessings than to turn this difficulty into something positive and beautiful. The walk this weekend was a great example of this in action and we hope to do more and more things like this as time goes on.

I want to leave you all today with one of my favorite poems. I have always loved this and it seems more and more meaningful and relevant to me as each day passes. Hope you enjoy it too.

Christ Has No Body
By St. Teresa of Avila

Christ has no body now on earth but yours,
No hands but yours,
No feet but yours,
Yours are the eyes through which is to look out Christ’s compassion to the world;
Yours are the feet with which he is to go about doing good;
Yours are the hands with which he is to bless men now.

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