Day +305: Bored but Happy

Today is day +305 for Max on his post-BMT journey and all remains well. We had a good time quietly celebrating day +300 last Tuesday together. Matt was out of town for work so, I took the kids for donuts in the morning and we actually went in to Dunkin and they got to pick out the ones they wanted (instead of the drive-thru we've been doing for months). There was no one in the store and Max wore his mask and didn't touch anything so, it was perfectly safe, just in case you were worried. :)

We are definitely starting to get a bit braver and venture out a little bit more. Max was actually in seventh heaven on Thursday of this past week as he got to go to Target for the first time in about 13 months! Matt and Alex went to the Xavier basketball game and Max, Ellee and I were sitting around here bored so, we decided to take a trip to Target. It was a bit nerve-wracking for me but, I made Max as safe as possible by making him ride in the back of the double stroller with the sun cover over him, not touch anything and wear his mask. It was not crowded in the store at all since it was about 7:15 pm but, I still made sure to stay far away from all people. We got lots of strange looks but, Max LOVED being there! We went up and down the toy aisles and the video game aisles and he looked at everything before deciding how he wanted to spend the $20 he had saved up. He ended up getting a remote control truck and has really been enjoying it.

We enjoyed a very fun evening on Friday with Matt's cousin, Megan and her husband, Todd. They invited us to their house to watch the Cavs play the Pacers, as Todd is a huge Pacers fan and has enjoyed talking with Max about the NBA. We all had a ball! Todd and Megan treated the boys to a very special evening. They had the house decorated for the game, had trivia prepared to quiz the boys with, had a Nerf hoop hanging on the back of their front door and even had special basketball oriented prizes for them. The boys have already asked several times when we can go back! They treated the boys very specially and I know they will remember that night for a long, long time. Thanks so much, Megan and Todd!

Other than this bit of excitement, things have been very quiet and relatively boring around here, which is ALWAYS a very, very good thing in the BMT world. It was a regular joke when we were inpatient and doesn't change a bit when you are outside the hospital. Boring and uneventful is just the way we like it right now!

Actually, our horizon is brimming with activity after activity and Matt and I are beginning to freak out just a bit. We have lots planned for the relative near future and it still seems somewhat impossible at this point, given the continued relative-isolation that we are living under to keep Max healthy and healing. We finalized our trip to Disney with Make A Wish on Friday. We are scheduled to go from April 17 - 23 and then we are going to tack on a five day trip down to Marco Island to visit my Grandma. She is turning 90 tomorrow and we haven't seen her in over 2 years now! We had a trip planned to see her at the end of February last year which we had to cancel after Max was diagnosed. We are all getting so excited about this trip. Everytime there is a commercial on for Disney, we all stop, listen and clap! We can't wait!

Prior to this huge event, we have Aunt Sarah's (Matt's youngest sister's) wedding on March 27th that we are all a part of. We are so looking forward to that also...it is going to be like our grand "coming-out" party since it will likely be one of the first times we are all together in public places since Max was diagnosed. We can't wait to celebrate with Sarah and Ryan and just enjoy having fun together. We also have a trip to Hilton Head with all of the Meyer family planned in July and 6 weddings for my cousins this summer! So, things are going to swing in the other direction soon and, while it is so exciting and wonderful to think that we will ALL be able to participate in these activities, it is also somewhat terrifying at this point. We know we will be ready when the time comes and that we will all have HUGE smiles pasted on our faces as we enjoy these events together.

Max is due down in Day Hospital on Friday for his monthly check-up and medications. We will definitely have another long list of questions for Dr. Davies, as we are anxious to get her take again on all these upcoming activities. I am certain that Max will receive another good check-up but, I will be sure to post an update as soon as I can after our visit on Friday.

Max's Meals is continuing to truck along. We are in the midst of planning a Valentines Day luncheon for the inpatient families in the BMT and Hem/Oc units at Children's. There is so much more I want to do with Max's Meals but, I find myself continually not getting to do it with the demands of the three kids and the crazy puppy here at home. I know that eventually I will get to it and make more of it but, for now, thank you to all of you that have donated funds already! It is making a difference and, with your help, we are going to be able to closely meet our goal of providing at least one meal a month to the inpatient families this year.

I did have one other bit of excitement this week that I wanted to share with everyone. On Friday, I received an email from Jordan Culbreath's mother, Alma. You all may remember Jordan from an earlier post of mine about Max's heroes (you could find it if you look back - I think it was in October or November). Jordan is a senior at Princeton University and a star football player on their team. He was unfortunately diagnosed with Aplastic Anemia earlier this year and has been battling the disease ever since. The boys pray for him every night with Matt and I (reminding us to include him in our prayers if we somehow forget) and about a month ago, I finally decided to get on his Caring Bridge site and see how he was doing. He is undergoing some of the alternative immune suppression/chemo therapies in hopes of combatting the disease as a suitable bone marrow donor has not yet been found for him. I posted a note on his site to let him know how much my boys admire him and that we are always thinking of him and praying for him. Last week, his mother wrote me back to say that she had found Max's site back in November and they were all very touched by his story. Don't tell Max but, they are sending him an autographed football from Jordan! I am keeping it a surprise because I know how much it will mean to him and how much it will brighten his day when he receives it.

I know how much it will mean because I know how much it meant to me to receive that simple email from Alma. To know that there is someone else out there, especially someone like Jordan, that has been afflicted by this disease and to make a personal connection with them and their family is just awesome. When I read about Jordan back in October, I felt somewhat vindicated in a strange way, knowing what an amazing athlete and picture of health that he is. It helped me to answer some of my questions about Max - how did he get Aplastic Anemia; why did this happen to him? Questions that we will probably never be able to answer. Somehow, it gave me some peace that this disease could strike anyone, at anytime and we really don't yet know why. I so wish that a suitable bone marrow match could be found for Jordan as a successful bone marrow transplant is the only sure cure for Aplastic Anemia [another story to demonstrate how important it is to join the National Marrow Donor Registry (http://www.marrow.org/) and to spread the word to others to do the same]. While we don't know Jordan and his family and may never have the chance to meet them in person, there is a connection between us that will be there forever. Our precious sons are fighting for their lives against a rare disease. I know Alma's fears and struggles and those of Jordan's first hand and I wish no one else had to endure them. We pray that Jordan will be cured and go on to live a long and full life, along with our Max.

Thank you for continuing to join us in our journey and for all your thoughts and prayers. More soon...

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

Day +294: Back on a Smooth Road

It's day +294 for Max and we have been riding down a smooth road again for the last few weeks. His Cyclosporine level issues have resolved themselves for the most part, the signs of graft vs. host disease that he had have calmed and we have not been down to the hospital in almost a week again! The best news is that we are not slated to be back down there for another 16 days now which makes Max very happy! He just asked me today when our next Friday Day Hospital appointment was and then he calculated the days until our next scheduled visit, Feb. 5th.

Alex returned to school 3 weeks ago and has adjusted extremely well. He is really enjoying it. He likes his teachers and classmates and has been having a good time playing with the Legos in the classroom and learning his letters and numbers. It has been remarkably nice to have another return to normalcy in the house. I can't tell you how good it has felt to have Alex back in school. I didn't think it was going to be this way but, it has really helped all of us to have the normalcy. All four of us enjoy taking him to school on Monday thru Wednesday and just getting to see a few people while we are dropping him off! Max wears his mask while we are in the school and people look at us with wondering looks in their eyes but, he doesn't get bothered at all. The mask has become a welcome part of his life as he knows it provides him with valuable protection from germs at times. Ellee loves going into the school with Alex and seeing his room. In fact, she is dying to get to school. She hates leaving Alex there, however, and has cried part of the way home every time! Yesterday when we picked Alex up, she gave him a huge hug as soon as she saw him and then held his hand all the way to the car. It was precious. Her world is her two brothers and she definitely misses them when they are not with her.

We do have a little change of plans with regard to Max's return to school. I didn't want to put anything out in the blog until I had the chance to talk to the school about it but, at our last appointment a few weeks ago with Dr. Davies, I asked her about school. We were tentatively planning (as ALL plans are in the BMT world) Max's return to 2nd grade at Wilson for sometime in March. However, Dr. Davies did not want him to return until at least mid-April and said that she did not think he could return at all this year for educational purposes. She would like him to spend a bit of time late in the school year "re-acquainting", as she put it, with the other kids and the school. The primary reason for this delay is really Max's energy level. She does not believe that he can make it through a full day of school and, I have to admit, I was relieved to hear her say this. We definitely notice often that he is still tired...more tired than usual...and this is perfectly normal for him at this stage of the BMT marathon. I have been wondering for some time how he was going to make it through a long, tiring day at school. So, at this point, since we have our Make A Wish trip to Disney tentatively scheduled for the end of April, we are planning to get Max up to school for some social-type times in May. We're going to plan it out more specifically as it gets closer but, we are initially thinking maybe some class meetings, lunches and recesses. Then he will hopefully return normally with everyone else next year, to 3rd grade.

Although this news was a surprise to us, we have learned not to be surprised by anything throughout this journey. It is a long one, as we have referenced many times, and Max's health and healing are of the utmost importance to us. Whatever we need to do to keep him safe and getting stronger everyday is what we are going to do. Max was definitely a bit disappointed and confused but, understanding and agreeable to continuing his home schooling with his wonderful tutor, Mrs. Conlon. It will be a banner day when he is able to go up the steps of the school bus again and be a student, just like the other 3rd graders.

With all this in mind, and to give Max some reading and writing practice, I have setup a personal email account for him. I thought it would be fun for him to get his own messages through it and be able to respond to people all on his own, rather than through this blog or through my email account. So, please feel free to send him a note anytime at maxjams@live.com. He is VERY EXCITED about this idea and had a smile on his face tonight as we answered his first email from Daddy!

People often ask me how I am doing throughout all this and overall, I am doing well. I am thrilled to see Max doing so well and feel so incredibly blessed with his progress. I am so grateful for my three beautiful children and feel lucky to be able to have so much time with them at these precious ages. We really do have extra time to just be together and have fun and I am cherishing that. I have to admit that it is challenging, however. Being at home 99% of the time with three little ones for over a year now has been something totally new for me. I find my patience tried just about everyday, especially when you add in the antics of Mr. Spud! I feel like we have all had to continuously adjust this year and it's been tough. But, whenever I feel frustrated or sorry for myself, I try to think about all of the families that we know and those that we don't know who have so much more difficult struggles. They are all the motivation and inspiration that I need to get through the tough moments.

I want to leave you on a high note tonight. Yesterday we got to do something that we haven't done in well over a year - we went to see a movie! Max and Alex have really been wanting to see Alvin and the Chipmunks, the Squeakwel since it came out at Christmas-time and I have been waiting for the right time to take them. I wanted to go when school was in session and after the movie had been out for awhile so that the theater would not be crowded at all. Some time ago, we had gotten permission from Dr. Davies to do this, as long as it was under these conditions. So, finally yesterday, I got the guts to do it! My mom and I took all three of the kids and it was such a joy to experience with them. As we were walking in, Max was so excited he could barely contain himself. He looked at all the movie posters and said, "wow, this place has everything!" Then when he saw the concession stand, he yelled, "they have ICEEs!!!! And they even have Mountain Dew!" I had promised ICEEs and popcorn, if they had them. While we were ordering our food, Max was checking out all the candy and I heard him say, "Awesome!"

The kids all enjoyed the movie. We were almost the only ones in the theater. At the last minute, a man walked in with two little kids but, they sat a few rows away from us so, I didn't worry. Ellee was talking, laughing and dancing throughout the movie and Alex was just loving the popcorn and ICEE. Max loved the movie and has talked about it a lot today. He wore his mask in and out of the actual theater with no complaints. After the movie was over, everyone had to potty so, we headed to the bathroom. We were lucky that no one was in there either. They had the new super powerful hand air dryers and the kids were hysterical with them. They had a blast playing with them for a few minutes and my mom's comment was, "wow, Kristi, you gotta get out more!" :) Overall the trip to the movies was a hit. They are already asking when we can go again!

Thanks for keeping up with our continued journey and for all your thoughts and prayers. More soon...

Peace and love,

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

Day +286: A Reflection

It's day +286...a big day around here in a weird kind of way. One year ago, just about this time, we were in the Hematology/Oncology Clinic at Children's Hospital for the first time. I had taken Max to our Pediatrician that morning, only to find out from a blood test there that his blood counts were extremely abnormal and that he needed a Hematologist to determine what was going on. I clearly remember the looks of concern on the doctor and nurses faces at the Pediatrician and the doctors words, "You need to be down at the Hematology/Oncology Clinic at 1:00 today. You should pack a bag and expect to be admitted. They are going to want to keep Max until they figure out what is going on." I also remember the look of shock on my mom's face when I went back to her house to see Alex and Ellee and tell her where we were headed. Max had played basketball only two days earlier in a crowded gym and had a great game! We had all watched him run up and down the court, loving every second of it! How could this be?!?

You all know how things went from there...a range of possibilities by that evening (ITP, Aplastic Anemia or Leukemia); a bone marrow biopsy the next morning; a diagnosis of Aplastic Anemia that afternoon with the doctor saying, "worst case, it would mean that Max will need a bone marrow transplant but, we don't think that is likely at this point"; weeks of CBCs and blood/platelet transfusions; numerous genetic tests on Max, Alex, Ellee, Matt and I; a brief period of time when a genetic disease, Fanconi Anemia, appeared to be the cause, followed by the relief that it was ruled out; preparation for Max's bone marrow transplant including a PICC line, a central line, EKG, CT scans, chest x-rays, ultrasounds, more blood work, etc; admission for the bone marrow transplant; chemotherapy; Ellee's bone marrow harvest; the actual transplant; discharge; and a long, winding road of recovery that Max remains on today. Wow...what a year it's been!

I have included the picture of Max at the top of this post because I think it speaks volumes about what a year this has been for him. This picture was taken by our friend Emily Mengel just this past October. She also took the picture of Max at the top right of the blog home page in the fall of '08. I hope when you look at the Fall '09 picture at the top of this blog entry, you will see what we see...he looks fantastic. We say all the time how amazed we are at how good he looks, given what he has been through this year. My typical comment to people is that he looks and acts more and more like the old Max all the time, yet there is something very different about him. He has matured a ton. I am sure that some of it is just the maturation that happens typically for a boy between 7 and 8 years of age...between 1st and 2nd grade...because I have seen it with many of Max's buddies in the neighborhood and with our nephews. But, there is more than that for Max. He has matured beyond his years and has a new zest for life. He notices and appreciates the little things much, much more than he used to. He loves traditions now and really enjoyed celebrating many of them over the holidays this year. He cherishes his brother, sister, mom, dad, dog, cousins, grandparents, aunts and uncles. He has just really changed in big and good ways. It has been a transforming year for Max in many, many ways.

Our hope for Max in this journey remains the same...that this year has just been one chapter in a very long, full and wonderful life. I have dreams about the day that he will be sitting on his couch with his children, looking back at his picture from the fall of '08 and then at his picture from the fall of '09 and telling them about the life saving adventure he had between those pictures. Then Aunt Ellee and Uncle Alex will walk in and add their memories to the story to finish painting the beautiful picture in Max's kids heads. I know they will be amazed and awed by their father's journey, just as we are today.

Max - we are so very, very proud of you. Your courage, strength, laughter and never-ending optimism thoughout your difficult journey this past year has taught us things about life that we never would have learned otherwise. Along with your brother and sister, you are our greatest gift. We are blessed to have you as our son and eternally grateful for having you in our lives. We love you.

Peace and love,

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

Day +282: Off to a Great Start

It's day +282 and I thought I'd give everybody a quick update on Max's status and things around here since another week has gone by already! Max is doing well. We have been down to the hospital twice this week and things are again positive and good. On Monday, Max had another blood draw to check his cyclosporine level and kidney function (they monitor this closely while the kids are on the cyclosporine as it is tough on the kidneys) and finally, things were better with regard to the cyclosporine level! It wasn't quite where they want it to be but, it was much closer so, we all breathed a sigh of relief, at least somewhat. They also checked his eye and rash while we were there and both are much improved. Max did much, much better with the needle stick. I worked on preparing him all weekend, little by little, and we are now doing some breathing together (kind of like when you're in labor :) ) and trying to think of a happy place while they are doing it. Those two things, combined with some numbing creme we are putting on before we leave here, seem to be helping him get through the sticks much better.

We were down in Day Hospital yesterday for our regularly scheduled monthly IV infusions and visit with Dr. Davies. Max's cyclosporine level was again acceptable (phew!) and Dr. Davies felt that everything looked great! She kept commenting that Max looked so grown up to her, she couldn't get over it. She hasn't seen him in probably about two months and she just kept commenting on how good he looks and how grown up he has gotten. Nice things to hear from your child's bone marrow transplant doctor! She also gave us more good news - Max is now off of the low bacteria diet that he has been on since shortly before the transplant! This was music to Max's ears as he has been dying to eat strawberries and grapes! We stopped and I ran in to pick some up on the way home. He has eaten them for breakfast, lunch, dinner and snacks! He also got to have a treat on the way home yesterday - a McDonald's strawberry shake - one of his favorites that was also not allowed on the low bac diet due to the soft serve ice cream. In addition to this good news, Dr. Davies said that we are a go for our trip to Disney with Make A Wish at the end of April (April 17 - 23rd)! She has already signed the paperwork and one of our Nurse Practitioners has made sure that they have all our reservations ready to go! Very, very exciting! Finally, Max got a second H1N1 vaccine yesterday while we were at the hospital to try to help give him at least some level of protection against that virus.

All in all, our visits this week were positive and we seem to be getting back on our smooth road to recovery for Max. They were exhausting as Max is definitely tired of the hospital and the pokes but, when you leave on a high note, it really helps. 2010 is already looking up!

Alex also had a big week - he returned to preschool on Wednesday afternoon! He really seemed to enjoy it. I stayed with him for about the first hour but, realized shortly that he was having fun and didn't seem to care if I was there or not. He is in an afternoon class so, it is smaller than usual with only 10 kids. Eight of the kids are boys so, Alex is in heaven! He said that he played with several of them when I picked him up and told me that a couple of them were really nice to him. I think it is going to be great for him to be back. It was a big day around here to have someone returning to "normalcy" like that and we celebrated with pizza that night! We will be practicing extra good hand washing when he comes home and saying some prayers that the wrong germs don't make their way home with him.

We had a pretty good snow fall here in Cincy yesterday too and we all enjoyed playing in the snow last evening after Matt got home (thus the pics at the top of the post). It was really Ellee's first time to play in it and she enjoyed a little ride in our sled. I pulled her up and down the street and she kept saying, "go faster, Mommy!" I'm sure she will love sledding down some hills soon! Alex, Max and Matt enjoyed playing tackle football together and Spud ran around with some of the other neighborhood dogs and loved digging his nose down in the cold stuff!

We are off to a good start in 2010 and are hopeful that this will be a wonderful, fun year for all of us, filled with healing for Max. As good as things are, it remains a struggle for me to adjust back to reality. I know with time that things will get easier but, for now, it's difficult. Our eyes have been opened to a world we did not know existed, we have truly learned how fragile life is and our life priorities have been completely shifted. I think about and pray everyday for our friends that remain hospitalized in really tough situations with their children (especially the Akins, the Alfreds and the Martins). I wish there were something more that I could do for all of them and I feel helpless most of the time. I am working on getting Max's Meals really up and running so that at least we can provide families like them with some special comfort food now and then and be sure they know that people are thinking of them. Thank you to all of you that have provided us with donations! We are working on a Valentines Day dinner now and will keep you posted as things progress. These families are an absolute source of daily inspiration for me. Thinking of them and reading about their struggles reminds me constantly about what is really important and makes me appreciate every moment that I have here with my kids.

We have been incredibly blessed throughout this journey and have learned a whole lot about life. We are so thankful for the support that all of you have provided us along the way and continue to provide us now. I can't tell you how much your notes, emails, cards, phone calls, packages, etc. mean to all of us. They brighten our days. Thank you.

More soon.

Peace and love,

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

Day +275: Goodbye 2009...Hello 2010!

It's day +275 for Max and New Years Day...Happy New Year! We have had an eventful past 10 days and definitely sent 2009 out with a bang but, not exactly the kind of "bang" we would have liked! I'm going to start with the good stuff and I'll get to the rest in just a bit...

We enjoyed a wonderful Christmas Eve and Christmas last week, followed by a fun day celebrating Max's birthday. I've included a picture of the kids holding some of their favorite gifts - Max, Tony Hawk Ride (the skateboarding video game); Alex, his Chad Johnson jersey (not OchoCinco, Santa couldn't afford that one!); and Ellee, her stuffed bumble bee and baby doll. Max told me that it was the best Christmas ever and that was an excellent gift for Matt and I!

Max's Meals Christmas Eve dinner at the hospital was a success too, thanks in HUGE part to my mom's friend, Donna Phelps and her great family. They cooked up a delicious feast of roasted pork, scalloped potatoes, salad and green beans that everyone was raving about. They also had some of Donna's speciality deserts which were a big hit! In addition, we brought down a couple of trays of homemade Christmas cookies that the Meyer and Sherwin girls put together and the families enjoyed those too. Overall, we got to serve many of the inpatient families (including several of the kids themselves) on A5 and from the ICU, along with some doctors, nurses and other support staff. I personally got to see two families that are near and dear to our hearts, the Alfred's and the Martin's, and give them all big hugs. Both families continue to struggle with Ethan and Brayton's recoveries from their bone marrow transplants so, it was great just to see them and to feel like we were able to do something, even if it was small, to brighten their days just a teeny bit. We know first hand how tough it is to live in that hospital, watching over your sick child, day after day...so we knew that this time of year has to be especially difficult. We all hope that all the families just got to have a small break from the norm down there and enjoy some home cooked comfort food.

The rest of the week we enjoyed just hanging out and playing with all of the kids new stuff. It was very quiet around here, as usual, and we were struggling a bit with the after-Christmas let down. The kids and I are definitely growing more and more tired of this isolated lifestyle, being here at home 95% of the time, with the exception of a few small trips to relatives homes or to the hospital. With the winter now setting in and the cold here to stay for awhile, it's getting tougher to keep everyone happily occupied inside these walls.

In the midst of all this, we continue to battle Max's cyclosporine level, as you will probably remember from my last post. We have been down to the hospital multiple times each week to have blood drawn so that they can monitor the level of the drug in Max's system and try to get it back up to where it needs to be to prevent him from having other problems, etc. We have gone back to the non-generic version of the drug over a week ago and raised the dosage level 4 times since then, all to no avail. Obviously, each time they want to check Max's blood levels, he has to be stuck with a needle, which he was no longer accustomed to due to the central line he had for almost 10 months. We removed the line, as you'll remember, because we were down to once a month sticks for IVs and the benefits of no sticks no longer seemed to outweigh the risk of serious infection from the intravenous line. So, as luck would have it, one week after we remove the line, we encounter these cyclosporine level issues and have to go in for multiple sticks each week!

We have been getting Max through this the last few weeks by doing finger sticks rather than peripheral needle sticks. However, yesterday morning when we went in for our second level check of the week, his fingers just wouldn't cooperate. The blood just kept clotting up and wouldn't drip out enough to fill the two small vials that they needed. Finally, after three finger sticks, the nurse was able to fill the vials. During our visit yesterday morning, I asked the nurse to have our Nurse Practitioner, Paula, come in to look at Max's eye again (the same one that had the styes last week) as it continued to be red in the corner of the white part. Both Dr. Joshi (our regular outpatient clinic BMT doc) and Paula checked out his eye and then lifted his shirt, only to find a mild rash over his tummy and back. Much to our surprise, they think that Max is experiencing a mild form of graft vs. host of the skin and have put him on an eye drop and lotion three times a day to try to combat it. They think the redness in his eye may also be GVHD presenting itself. They are not overly concerned at this point and believe it is from the cyclosporine level issues we are experiencing but, as a result, we will be back down there next week for rash checks and an Opthamology appointment. As Paula said as she was leaving our room yesterday, "you all are going out of 2009 with a bang with that rash!"

We arrived home from the hospital at about noon yesterday morning, tired and hungry as we were only expecting our visit to take about an hour and it ended up being about 3 hours! We were planning to rest for the afternoon and get ready for a fun evening with the Meyer family celebrating New Years. Unfortunately, at 3:30 pm yesterday afternoon, Paula called me to say that the blood had hemolized (clumped together) from the morning and was therefore giving them erroneous readings on some of the tests. Dr. Joshi was insisting that we came down again to have another draw to be sure the levels were alright. I wasn't sure how to break this news to Max and when I did, he was not happy. But, we pulled ourselves together and decided to make the best of it, promising some packs of basketball cards for him if he could just do it one more time. Much to my dismay, things got worse once we got down to the clinic. The nurse, who we know and love from all our time down there, came in and said that we were going to have to do the peripheral needle stick to get the blood, not a finger prick since that had caused the clumping issues that morning. Max began to freak out about this and wouldn't let either of us touch him. At one point, he had me and the nurse both in tears as he shouted across the room, "I have been through enough today, Mom! I have had three sticks already! I am NOT doing this!" It ended up taking three nurses, along with me, to get the blood drawn and Max and I were both exhausted.

On the ride home, we decided that 2009 just wanted to give us one last really shi$%y day so that we would always remember what a crappy year it was and appreciate all the great years ahead! I told Max that I have been thinking for some time that while 2009 may be one of our all time worst years, I think 2010 is shaping up to be one of our best! We talked about all the fun things that lie ahead this year - our trip to Disney with Make A Wish; a trip down to visit Great Grandma (my Grandma) in Marco Island, one of Max's favorite places; Aunt Sarah's wedding in March; our trip to Hilton Head with the Meyer family; another possible trip to Hilton Head for my cousin's wedding; being able to play with lots of friends again; being able to go shopping at Target again (one of Max's favorite stores) or to fun places like the movies, Ollie's skate park, just about anywhere that Max loves to go; just a general return to a more normal 8 year old life. We are hoping and praying that this will all be possible for Max in 2010. We are all very ready for it and greatly missing it.

After talking about the fun to come in 2010, we also talked about the fact that we did have some fun times in 2009 - our trip to the Reds game topped the list; our 100 day party; many days/nights having fun with our cousins. The list was quite a bit shorter than the fun we plan to have in 2010 but, there were good and fun things that even Max could list from 2009. After all was said and done yesterday, we were able to gather ourselves back together, muster up some remaining energy and enjoy some fun with Matt's sisters, their families and his mom ringing in 2010.

Times have been a bit rough again lately. In the BMT world, you never really know what lies around the corner. Things can be seemingly perfect, only to find out the very next minute that they are not what they seem. We are very optimistic that we will get through this bump in the road again with Max and get back onto smoother highways but, we have to admit that this journey continues to be difficult. We know that it could be so, so much worse and we are eternally grateful for the many, many blessings that have been showered upon us along the way...but, we also have to be honest...this is getting old. We are doing all we can to live in the moment and make the best of what we have and where we are each day but, we all have our tough moments. I don't think it would be right if we didn't have them.

One thing is for sure...2010 has got to be a better year. You can bet that you will see us thoroughly enjoying every fun moment that we are given in 2010 and sharing them with all of you.

More soon...

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