Saturday, June 19, 2010

Day +444: Some Fun...and Some Sadness

It's day +444 for Maxer and he is doing very well. He has been greatly enjoying the last few days and we have been packing in the fun activities! Yesterday was the highlight of our fun the past few days as Max and Alex attended the Chris Mack Little Dribblers Basketball Camp at Xavier University (Go Muskies!). It was intended for kids 4 - 7 but, I wrote them and asked if Max could attend with Alex, given his current medical state and energy level and they happily said it would be fine. The boys LOVED it! They had a ball learning lots of skills and shooting hoops with some of the current and past XU players and Coach Mack. It was an excellent camp. We are heading back in August for another day. I thought you all would enjoy some pictures from their time. There were several media crews there too so, the boys were both on the news briefly last night (Max on Channel 9 and Alex on Channel 12...I'm hoping to get links today and will post them for you) and there are some pictures of them at the following link from the Cincinnati Enquirer: Enjoy their smiles! The best part of the whole camp for me was that no one knew a thing about Max's situation and therefore, he was just "one of the kids" enjoying the camp.

Unfortunately, once again, we also have very tough news to share from our BMT family. Our dear friends, the Merks who live here in Cincinnati and who we met while Max was inpatient for his BMT, received very difficult news about their precious son, Tony this week. His cancer has returned. Tony is 5 and has already been through an extremely intense battle with this cancer, meduloblastoma. He had received several great reports that his body was free of the cancer in the past six months or so and then, suddenly this week, they got the news that it had returned. Once again, we are crushed by this revelation. It is heartbreaking and it is so unfair. The Merks are reeling from this news, of course and are currently trying to decide what course of treatment to pursue for Tony, once again. We would just ask that you keep their entire family in your thoughts and prayers right now and for some time to come.

It's been a very trying week again for our entire family. Sometimes the news from our BMT family is so devastating that it's difficult to go through a day. It tempers everything when you see life in this way and are constantly reminded how fragile it is. As I sat at the basketball camp with Ellee yesterday, watching the boys having a great time, my head was filled with thoughts of the Merks. It was so wonderful to be able to watch the boys just being boys...I just want that for Tony and all the Merks too.
Thanks for your continued love and support for our family and all of the BMT families that we have grown to love and care for.
More soon...
Peace and love,
Kristi (and Matt, Max, Alex, Ellee and Spud)

Wednesday, June 16, 2010

Day +441: Learning to Live

It's day +441 for Max and he is doing great! He looks great, feels great and had a blast this afternoon playing with Alex and a good friend from school that he hasn't had over in probably almost 2 years, Cam. We went down to see the ENT at Children's this morning and Max's ears are great, finally. They have cleared up and look "normal", in the ENTs words. You can tell by looking at Max. I realize now how much he has been sufferring with the pain in those ears the last 10 days or so. We were both so happy that things are finally healing that we stopped and picked up donuts on the way home to celebrate!

Unfortunately, we got some very sad news on Monday evening of this week. One of our dear friends, Ethan, who was in the room next to us in the BMT unit, lost his battle on Sunday and earned his angel wings. You may recall that I have spoken of Ethan Alfred and his wonderful family many times before this. They have weathered unimaginable hardships, as Kathy, Ethan's mom, was separated from her family in Minnesota while she was here with Ethan for over a year. They were finally able to get closer to home a few months ago in a Minnesota hospital but, sadly, Ethan never made it home. He was only 21 months old and spent his entire life fighting to live. Nothing about this situation is understandable or even comprehensible.

As I tucked Max and Alex into bed last night, I told them about Ethan's passing. They were both very upset and troubled, of course. I tried to console them by saying that it is very hard to understand that these kids fight so hard for so long and don't win their battles. Alex said, "But, mom, we're winning...Max is winning." To which Max said, "That's right, Alex but, we ALL want to win...every one of us kids on that floor want to win!" Wow...once again, he impresses me! He has so understood things that I didn't know he would. It's one of the huge blessings that has come out of this journey for him, especially.

We ended the conversation by talking about heaven and saying that we have many kids who's families we met and grew to love through this process that are up there now - Ethan, Matthew, Andrew, Natalie, Jerrid and Troy. It's hard to believe that this many of the kids that we shared our time with during Max's BMT stay have not made it. It's incredibly saddening and sobering to think about all of them and to realize, once more, how amazingly blessed Max and all of us have been throughout this process. Matt and I say it all the time to each other - there is just no way to explain how blessed we are. I ended my talk with the boys by saying that in everything we do moving forward with our lives, we need to honor all of these kids and their heroic fights. The boys whole-heartedly agreed.

To that end, I am moving forward with a passion around Max's Meals. I have met with a lawyer (a family member that is helping me out) about pursuing the official 501c3 non-profit designation. I am pulling together some business plans and a Board of Trustees. In addition, we are going to expand the mission of Max's Meals - we are also going to have a piece that Max will "run" by deciding what kind of entertainment items (ie game systems, toys, etc) to donate to the patients of the Cancer and Blood Diseases Institute at Children's and we are going to have another piece dedicated to raising funds for the valuable research done by the doctors at Children's. We are getting very excited about this whole venture. I'll keep you posted as things move forward. Unfortunately, it doesn't look like the Pepsi Refresh project is going to work out for us. We haven't gotten any movement in our standing in some time and, as I looked around at the other ideas, I realized that it is largely a popularity contest. There isn't a whole lot of merit to what wins, not that there aren't some great ideas in there...but, there are some not so great ones leading the packs at some grant levels. Please continue voting, if you can but, I think we can pursue more merit based grants in the future.

Things have calmed down once again around the Meyer homestead and we continue to feel incredibly grateful and blessed. While this journey has been long and difficult, and we are sure that there will be more bumps in the future, it is one miraculous and beautiful story. We will never forget all of the sweet kids that we grew to love through this process, especially those that have passed. As one of my friends at the hospital likes to say, "it's through every one of these kids and their experiences that I truly learn how to live."

More soon...

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

Monday, June 14, 2010

Day +439: Home Sweet Home

It's day +439 and we are home! We got home about 3:30 this afternoon and Max is doing very well. His ears are much, much better and he is in fabulous spirits to be home with his brother, sister and dog (and his mom and dad too). We are all exhausted from the events of the past few days and all the shuffling around and lack of sleep so, that's it for tonight. Lights out at the Meyer house with everyone tucked into their own beds...hooray!

I'll give you more details soon...

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

Sunday, June 13, 2010

Day +438: Bumping Along

It's day +438 and our bumpy road has unfortunately returned as I am writing this update from the hospital. Max was admitted last night after his ear pain continued yesterday, along with unusual fatigue and a fever to the point that, per doctors orders, I had to call the BMT doctor on call. He is resting comfortably today and we are hoping to be released tomorrow or Tuesday at the worst. At this point, the doctors think that he is still experiencing painful ear infections in both ears and it is a bit concerning that they have not cleared by now, given the antibiotics that he has been on the past 8+ days. So, he is getting IV antibiotics around the clock along with antibiotic drops in both ears. They have also drawn multiple cultures of his blood and nasal secretions to see if there is any "tough" bacteria in his body that they may need to combat with some other type of medicine.

We were also down here on Friday most of the day and did see an ENT while we were here. The ENT was able to clean his ears out and take a good look and felt that the infection was still there because there was so much gunk in them that was blocking the antibiotics from treating where it was needed.

It's hard to believe that we are actually in the hospital for ear infections but, it is a perfect example of the BMT world we are living in and the type of treatment that can be required to help Max through. Max is remaining generally calm about everything and did an amazing job yesterday in the Emergency Department (where we have to come through after hours and weekends). Unfortunately, it took four tries to get his IV placed and that is not fun for anyone! He weathered it like a champ, better than he has done in sometime. Obviously, that helped me tremendously. I have been able to also remain calm and rational about this whole situation so far and that is somewhat new for me, coming in to the hospital like this. Usually both Max and I are a mess emotionally. It's so difficult to give up control over your life and re-enter like this. You never know what is really going on and how long you might be here, etc. But, I think the events of the past couple weeks have helped us both to deal this weekend. We have come to grips with the reality of where we are and our current "normal" and we all just know we have to deal with stuff like this for a while yet. We also know that eventually it will not be this way. In the meantime, we are all wearing our "Livestrong" bracelets from the Lance Armstrong Foundation so that we can remind ourselves to dig deep and get through when we need it.

Max's biggest struggle today is missing his doggie, Spud. He doesn't want to talk about him or think about him as it makes him sad. He is in love with that dog and has missed their regular morning couch cuddle today.

Matt has told me that Alex and Ellee are hanging in there pretty well. They were sadly looking out the storm door yesterday as Max and I pulled away to head to the hospital. They don't want this to happen either...they are tired of it too! Thank goodness for my mom and dad and Matt's mom who quickly jump in to help out with them everytime we find ourselves in this kind of situation. What would we have done without out wonderful families to hold us up this past 17 months!!

Matt and I are taking this situation as yet another data point in our decision making about how to balance things correctly for Max moving forward. We feel like doing this regularly is not sustainable and we want to avoid it as much as possible for all of our sakes. Thus, we remain anxious to have our discussion with Dr. Davies in July regarding the big picture and how best to navigate things moving forward.

The only advice I'd like to leave you with as I end today is don't ever take your family time for granted. Rejoice in the simplicity of just being at home all together, even on the boring days. These experiences of separation for all of us have made that time together so special and precious. Hope you can make the most of it too.

More soon...

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

Tuesday, June 8, 2010

Day +433: Getting Back on Track!

It's day +433 for Max and he is finally feeling better, thank goodness. Things have calmed down around here again and we are slowly getting back on track. I spoke to the hospital on Monday and the results of the labs they sent on Friday were all negative - in other words, Max did not have chicken pox or any of the other viruses that they typically check for down there. That was a huge relief, of course. His ears continued to really bother him until this morning, unfortunately. He had some bloody drainage come out of both of them over the past few days but, they seem to finally be feeling better tonight. Poor fella...he was really in some serious pain with them. He told me tonight that they had hurt worse than an IV...we all know that is really saying something for Max! Given all this, I have requested that an ENT see him as soon as possible so that we can have an expert look in those ears, etc. and see what is going on. Hopefully we will get into one later this week or early next. In the meantime, no swimming for now! We are also going to check into some ear plugs that they recommended so that Max can hopefully get back to swimming safely before too long this summer.

Based on last Friday's difficulty for Max, we are also going to be talking to a psychologist with him. I am glad that we are doing this and feel that it will be very helpful for him. His Nurse Practitioner and I agree that he could use some outside help to just get some of his feelings out and to help him learn some coping mechanisms. I have been surprised that there has not been more involvement from the psychological perspective throughout his journey so, I am happy to be getting some help in this area soon.

The last week has been scary for all of us and has shaken our confidence again. I think we are just tired of getting a bit "burned" when trying to return to some normalcy. However, this situation has been important because it has made us realize that this is part of our "new normal" and that being prepared for it will help us all to deal with it more effectively. We have requested a meeting with Dr. Davies also so that Matt and I can have some time to sit with her, without Max there, to really understand the path moving forward and all the possibilities. We feel like we need to know this so that we can strike the right balance for Max. We want him to be back in the real world as much as possible but, we also want things to be as safe as possible for his health. If that means that remaining patient for a while yet and not doing everything we might like to do right now is the best thing for Max, then that is absolutely what we will do. To ensure a bright future for Max, we have no problem being more patient!

Alex and Ellee continue to roll with the punches pretty well too. Having Max under the weather the last week was tough on them too. It requires more of mommy's time to look after him again and to be at the hospital, etc. and I sense that it makes them uneasy as well. They are just as worried about their big brother as anybody. He means the world to them and they don't want to see him sufferring or unhappy either.

As we have said many times in the past, the BMT process is a marathon, not a sprint. One of the favorite sayings among BMT families is, "slow and steady wins the race." We have lived by that motto for over 18 months now and will continue taking things one day at a time, enjoying every moment we spend together, weathering this journey as a family.

More soon...

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

Saturday, June 5, 2010

Day +430: Another Bump In The Road

It's day +430 for Max and unfortunately, we have hit another bump. I feel it only fair that to truly represent the voyage of a BMT patient/family, I need to share both the ups and the downs. Beginning Thursday at about 4:00 pm, we started to hit another, hopefully relatively minor bump in Max's BMT road.

He had spent the day enjoying himself. He went to a movie with his tutor, her son and Alex to celebrate the end of the school year and had a great time. He was playing outside and came in to tell me that his left ear hurt. I immediately thought of all the swimming he had been doing, thought it might be swimmers ear, and quickly called our Nurse Practitioner at Children's to see if she had any suggestions to help him out. She recommended letting it be and calling the on-call BMT doctor if anything worsened overnight so that he could be seen down at the hospital. Max made it through the night but, not without waking up about every 2 hours with ear pain. So, first thing Friday morning, I called our Nurse Practitioner again and they squeezed him in for a clinic visit yesterday.

We headed down to the hospital, thinking that we would hopefully be in and out within an hour or two with some antibiotics for his ear...but, that is not how this BMT world operates! Reality check time! Once we got there, three different Nurse Pracitioners checked out his ear. Although they could not see beyond the wax in his ear, they assumed it was infected based on his reaction to their touching/pulling on it. I pointed out a few bumps to them that have been coming and going on Max's body the last few weeks and that's where the concern started. They ended up bringing one of the BMT doctors in and she suspected that the bumps may be chicken pox. As a result, they kept us for six hours, had Max get an IV so that he could get a bolus of fluids, an antibiotic and an antiviral that could help if it were chicken pox. They won't have results of the testing that they did for a day to three days so, we won't know if it is chicken pox or possibly some other virus until then.

Of course, this was all quite a shocker to Max and I. He did not handle it well, to say the least. At the worst point, he had backed himself into the corner of the bathroom attached to his clinic room and was screaming at me and the three nurses in the room. He kept saying, "I have been through enough! I am NOT doing this today! I am in charge of me and I am leaving!" He was basically hysterical and thus, I was a mess as well. We finally got him up on the table to get his IV but only by threatening him that I was going to leave the room first. It was awful...awful. Thankfully, once we got the IV in and the fluids and meds running, things calmed down and he took a good nap for about 2 hours. He had thoroughly exhausted himself emotionally and physically. I was again amazed and impressed with the nursing staff and our Nurse Practitioners. They made sure that I was alright as well as Max. I had some wonderful discussions with two of them and it really helped me to put everything in perspective. We did get to come home last night, which we are beyond grateful for, and that made all the difference for Max. He came home on two new oral meds and two new ear drops so, it kind of feels like a step backward, to say the least. But, he has been resting here since and is showing some improvement today. We are keeping a close eye on him and are happy to know that Dr. Davies is on call this weekend, should anything worsen.

I share this situation with you because I think it's important for you all to know about both the ups and downs that we are continuing to experience, even at this point in our journey. This remains tough...very tough for all of us. Yesterday was a huge reminder of how delicate Max's health remains and how important it is for us to drop everything anytime that things are not quite right with him. It was a reality check, to say the least. This is our life now and for some time to come yet. I alluded to it in my last post...this is what I meant when I said that we are not "back to normal." We really are not even close.

We are so grateful for the excellent progress that Max has made and for so many things about this journey. We have learned so much and truly experienced a miracle. Yesterday was just a reminder that we have to continue to take things slowly, one day at a time, appreciating every moment we have together.

Matt and I are determined to continue trying our best to pay it forward at the same time. Yesterday, Matt played 100 holes of golf with the Cincinnati Golfers for Charity (CGC). With this event, the CGC raised over $100,000 for the Make A Wish Foundation and Cancer Free Kids, two amazing charities. Matt was thrilled to have surpassed his fundraising goal of $2,500, with the help of many of you. I am continually encouraged by our progress with Max's Meals and the Pepsi Refresh contest. We are climbing up the ranks and are currently in 61st place. I think with persistence and daily voting, we may make it into the top 10 and get the $5,000 grant for Max's Meals!

As you all know, Max, Alex and Ellee are the most precious people in Matt and I's lives. We will do anything we have to do to keep them safe and happy. Our tough experience yesterday reminded us how fragile life is and how important it is to live in the moment. We hope by sharing our life, you will find yours even more meaningful.

We'll keep you posted...

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

Thursday, June 3, 2010

Day +428: Fun, Fun, Fun

It's day +428 and I wanted to catch up a bit on my blogging. It's been a while since I've updated because we've just been too busy having FUN!!! :) It's been wonderful. Our trip to Disney with Make A Wish was absolutely a turning point in our lives. Since we've been back, we have had more fun and seen more people than I think we have in the past 10 years!

Our picnic celebration and Max's bash at Ollie's Skatepark the next morning were a blast. We had about 250 people come to Beech Acres to celebrate with all of us and every one of us enjoyed it. The boys ran around between the skatepark, the ball field and the playground with all of their friends to the point that we barely saw them! It was kind of a special thing if an adult that came actually got to see Max! He loved it. Being at Beech Acres and seeing Max be able to run around like that, enjoying himself was somewhat of a metaphor of the entire experience for me. We have been to that park many times in the past 18 months to take a walk or let him ride in the skatepark when no one else was there. But, during those visits, I had to tell him that he couldn't play on the playground (due to the germ risk there) or ride his scooter in the skatepark if there were other kids there. So, it was something to be able to see him being him again, with essentially no restrictions there. It did my heart very well.

The party at Ollie's the next morning was a ball too. Every kid that came got out there in the skatepark and tried it out and seemed to really enjoy it! The adults had a great time too, just watching the kids having fun! Many people had not been there before and have told me that they are going to go back and try it again, their kids had so much fun. Of course, Max was in his glory. He was zooming around those ramps just like he used to, with no fear or hesitation. Again, it did my heart very well to see him like that.
Overall, the celebrations really continued the healing process for all of us. My aunt came all the way down from Cleveland for the picnic and she commented that being there really helped her with her healing. I agree completely, Lauri. We are getting there big time.

I do have to admit that the week of the parties was quite emotional for me, which surprised me somewhat. I would find myself crying easily, something that I have not done in a while. I finally took the time to figure out why and realized that it was a combination of things. Early on in Max's journey, Matt and I decided that we had to pull ourselves together and be strong for Max -- that we couldn't cry and wallow in the sadness of the situation but, that we had to do our best to make the most out of every day and stay as positive as possible for him. Thus, I have said many times to Matt that I knew I would be emotional when the good times came. In addition to that, I think I was emotional that week because the reality of Max's situation set in more than it has prior to this point. When I imagined us at the point of having a celebration party in the past, I imagined us being "back to normal". As I prepared for the parties that week, I didn't feel "back to normal". Max's health is still very fragile and we remain constantly on alert with him, in fact we almost had to head down to the hospital the Thursday before the party for a fever (thankfully it subsided and never hit the 100.4 mark where we still have to call and rush down to the ER); he wasn't back to school regularly (just visiting his class a few hours a week); we are still down at the hospital at least once a month to have Max checked out and receive medications; Max remains on significant medication; etc, etc. (you get the idea). What I realized that week, even more accutely than I had before, is that we are never getting back to the normal that we knew before. I have to admit that there was some mourning in me for that old normal, even though our new normal looks better and better all the time and Max has come so far. I was sad that we can't go back to the carefree innocence that we knew before - where we firmly believed that all of our kids would grow old and live long, full lives. We do our best everyday to focus on the positives in this situation and doing that has carried us through this ordeal very well. However, sometimes, the negatives creep in and get you. I think it's important that we acknowledge them and deal with them and then move on. And that's what we did that week.

The week after the parties, Max got up to school three times and really enjoyed it. We even went on a field trip with his class and he rode the bus with them! Then he rode the bus home on Friday afternoon too. It was such a joy to see his smile as he got off at our stop! Alex had his last day of preschool last week - he's now an official Wilson Elementary School Kindergardener (another emotional time for Mom)! We had a fabulous Memorial Day weekend too. We went to a pool party at a neighbors on Sunday and Max swam for almost 5 hours straight! He has always loved swimming but, I think there is something even more exciting and enjoyable about it for him now. My theory is that after you have been deprived of something for a period of time (as Max was with full body immersion for 10 months while he had his central line) it feels even better once you can do it again and you just can't get enough of it.

Yesterday was Max's last day of school. He went up to school for the Field Day fun on Tuesday and then went yesterday afternoon and again rode the bus home. Our neighborhood has a fun tradition of having the kids throw water balloons at the bus stop and then jump in a neighbors pool with their clothes on. Max was up at 5:30 am yesterday in anticipation of this fun! He was all smiles all day. I had to tear him out of the pool after almost 3 hours yesterday to get home for dinner.

Watching Max have all this fun is truly miraculous. Often I can't even believe that it is the same kid that endured so much this past 18 months. If you didn't know what he's been through, you would never know to look at him in these situations, having a blast. It's a dream come true. A real life miracle. We are just enjoying every minute of life now and having as much fun as we possibly can.

As always, we continue to feel eternally indebted to Cincinnati Children's Hospital and all that they have done for Max and our family. We think often of the other families that are just embarking on or in the middle of journeys like we have taken with Max. Our mission with Max's Meals is gaining momentum everyday and we are hard at work to continue providing comfort to those families currently living at Children's. The Pepsi Refresh project could provide us with some wonderful funds to further this mission. Please vote today and everyday until June 30th to help Max's Meals win! Just click here to vote:

Thank you for your continued love and support. We feel so blessed to have had such a fabulous support community by our sides during this difficult journey and look forward to continuing to enjoy life with all of you as we move forward.

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

Tuesday, June 1, 2010

Day +426: Help!!! Need Votes for Max's Meals!!!!

It's day +426 for Max and he is doing great! I have LOTS I want to blog about from the parties still and the end of the school year but, I'm going to save that for later and just ask you for some help right now.

A few months ago, I learned about something cool that Pepsi is doing to help improve communities throughout the U.S. They started a project called Pepsi Refresh where they are giving away $1.3M each month to fund great ideas, as they put it. They say, "we're looking for people, businesses, and non-profits with ideas that will have a positive impact. Look around your community and think about how you want to change it."

I tried for two months to get Max's Meals entered in the running for some funding and finally realized I had to stay up til midnight on the last day of the month in order to get the idea submitted. Last month, I finally got the idea in and I just found out this morning that it was approved!!! That means that Max's Meals is now in the running to receive a $5,000 grant from Pepsi if we get enough votes to be in the top 10.

So, here's the bottom line...I need your help. With your support and votes, Max's Meals can get a serious chunk of change to provide comfort to all the inpatient families in the Hem/Oc/BMT units at Cincinnati Children's. All you need to do is go to the link below and vote each day until June 30th for Max's Meals. You only get to vote for an idea once each day so, I need you to try to remember to go in each day this month at some point and vote for us.

Our community has already been so supportive of Max's Meals. With your continued support and votes, I know we can do wonders to comfort the families enduring difficult times at Children's. Thanks so much for your help. I'll keep you posted on how we're doing!

To vote, click here:

More soon...I have LOTS of fun things to blog about!!

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