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: 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 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'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, 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)