Friday, September 25, 2009

Day +177: Tired...Just Tired

It's day +177 for Max and he continues to progress well through the BMT marathon. We were down at the hospital yesterday for our bi-weekly Day Hospital visit and medication infusions and his latest blood counts look good. Based on his counts, progress is continuing in the growth of Ellee's little marrow garden within his body. He is just below normal levels with his red and white cell counts and is doing wonderfully with his platelet count (367 a reminder, it was 6 when we first took him to the doc in January)! The doctors are all pleased with his progress and feel it is just a combination of time, patience and germ protection that we need to get him back to full strength and complete blood counts. All wonderful news. In addition, the cultures of his bumps have all come back virus, no bacteria and no fungus at this point. So, a dermatologist looked at them yesterday just to be extra safe and we are treating them as if there is some kind of secondary infection but, she thinks that he may just be extra sensitive to bug bites right now. Who knows for sure...we are just thankful that they are nothing more than that! After almost 7 hours at the hospital yesterday, we left feeling tired but, happy and grateful, as usual.

Obviously, things with Max's health are moving along just swimmingly. The difficult part now is that we are all just tired. As I referenced in my post last week, we are all increasingly tired of this lifestyle. We would like the happy times back. We are all doing our best to remain upbeat and positive, knowing this is all temporary but, it is taking its toll on all of us and wearing us down somewhat. As I have said to many people, my life, in particular, was quite difficult before I had a child with a life threatening illness. Having three kids in six years was keeping me add in the worries and work associated with Max's illness and I am just wiped out. Matt feels the same way. His job has gotten increasingly challenging over the past few years, as has our life at home with the three busy youngsters. Now he is feeling the pressure of the bad economy at work (not to mention that I am not working right now either) and is coming home to three energetic kiddos that have been stuck at home for months! It's a lot to handle for both of us. Then we added Spud into the mix and while he has brought lots of joy to all of us, he is also no picnic! As everyone knows, puppies are work...lots of it! He is great at causing lots of trouble, especially each morning. His favorite thing to do is to steal a paci from Ellee and then run out the dog door so that I have to chase him around on the deck and in the yard to retrieve it. Fun!

To top things off, we have had an extra rough week with Ellee. All kids go through phases and maybe because her second birthday is fast approaching, she is going through some kind of preparation for the terrible twos this week! We aren't sure but suddenly, as of last Monday, she doesn't want to cooperate with us about sleeping. She has cried and thrown a temper tantrum for every nap and bedtime this past week and has been up at least two nights during the middle of the night crying and wanting to "rocky, rocky" in the rocking chair. Last night was the clincher. She woke at 2:56 am and started having one of her fits, screaming and crying for us to "rocky, rocky" or "go downstairs". This went on for two hours, in which she managed to wake up Spud who howled like crazy from his crate down here in the family room. Such fun! Matt and I finally got back to sleep about 5:00 am, only for Max to come in at 6:00 am, ready to go for the day! Needless to say, we are both exhausted today.

Dealing with the normalcies of child rearing right now is extra challenging. Did I mention, that we are tired? We feel like we are also recovering from Max's bone marrow transplant in some way. I think the months of sleepless or restless sleep nights have caught up with both of us these past several weeks and our bodies are now trying to make up for lost rest time. We try so hard everyday to focus on the positives within this situation and to make the best of it. We just have to admit, however, that it's tough and sometimes it just sucks. It's a struggle and the biggest challenge of our lives. We talk all the time about our hopes for the future...a day when this whole experience is just a "line on the resume of our lives", is how we like to think of it. We are confident that time will come and that we are strong enough to get through this challenge. Everyday we become a closer and closer team as a family and we know that will be everlasting.

Max is doing better emotionally with everything. We were discussing the upcoming Holidays on the way home from the hospital yesterday and he asked me if he would be able to play in the snow this year as he couldn't last year because his counts were so low. I told him that he would be able to, which made him very happy. Then he told me that his sickness was the worst present he ever got for Christmas. While he is doing much better in terms of adjustment to his current life, he still struggles with it and wishes it never happened, as do we. Of course we would rather that none of this ever happened but we know that we can't change it and we are doing our best, all of us, to get through it. We all ask ourselves and God "why" and we try to imagine all of the good reasons "why" this had to happen to Max. I found the following on a posting of a fellow BMT mom and I'd like to think this is part of the answer:

By Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. Did you ever wonder how mothers of children with life threatening illnesses are chosen? Somehow I visualize God hovering over Earth selecting His instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

“Armstrong, Beth, son, patron saint Matthew. Forrest, Marjorie, daughter, patron saint Cecilia. Rutledge, Carrie, twins, patron saint Gerard.” Finally, He passes a name to an angel and says... “Give her a child with a life threatening illness.”

The angel is curious. “Why this one God? She is so happy.”

“Exactly” smiles God. “Could I give a child with an illness to a mother who does not know laughter? That would be cruel”

“But does she have patience?” asks the angel.

“I don’t want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she will handle it.”

“I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I’m going to give her has its’ own world. She has to make it live in her world and that’s not going to be easy.”

“But Lord, I don’t think she believes in you”.

“No matter. I can fix that. This one is perfect. She has just enough selfishness.”

The angel gasps – “Selfishness? Is that a virtue?”

God nods. “If she can’t separate herself from the child occasionally, she’ll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn’t realize it yet, but she is to be envied. She will never take anything her child does for granted. She will never consider a single step ordinary. I will permit her to see clearly the things I see: ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side”.

“And what about her patron Saint?” asks the Angel. His pen poised in mid-air.
God smiles. “A mirror will suffice”.

Aaaaaaaaaahhhhh...Matt and I (I know it applies to Dads as well) just need to read this everyday right now and know that there is a larger plan in all of this and be grateful for the wonderful things it is teaching us and doing for our family.

We are so thankful for all of your continued support and love. Max's Mighty Mob remains at the top of the fundraising list for the Cincinnati Walks for Kids event with $6,242 raised and 70 walkers! Incredible! I just ordered awesome t-shirts for everyone walking today from a wonderful charity organization here in town, the Aubrey Rose Foundation ( Part of our t-shirt costs are also going to a good cause! I'll be sending a note out soon to those of you that have signed up to walk with more details regarding the upcoming big day. If anyone else still wants to join us, please go ahead...we would LOVE to have you.

More soon...

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

Friday, September 18, 2009

Day + 169: Bump Update

It's day +169 and I thought I'd just post a quick update on the bumps on Max's legs because I figure I have some of you worried like I was. They are greatly improved, thank God! Our Nurse Practitioner, Paula, called yesterday too and so far all of the cultures have shown nothing "life threatening" as she put it. In other words, so far no serious bacteria, viruses or fungi have grown in the lab. Phew!!! Another HUGE sigh of relief. We will still await final results of the tests but at the moment, we are relaxing a bit. We still all feel that it was likely Impetigo as the oral and ointment antibiotics seem to be clearing it up and Paula reminded me that they saw the tell-tale red rings around the bumps, indicating some kind of bacterial infection. But at least at this point it seems to be clearing up nicely and we seem to be getting it under control. Phew, phew, phew.

We are enjoying the absolutely beautiful fall weather here in Cincinnati with our little pup. Have a big day planned of walking in the Nature Center with Grandpa Papi at lunchtime! Of course, we'll be keeping those little legs of Maxers covered up with pants and bug spray to try to avoid any more drama!

More soon...

Peace and love,

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

Wednesday, September 16, 2009

Day +167: Keeping Things Interesting

Today is day +167 and I can truly say that Max has been keeping things interesting for us throughout this process. Yesterday we headed down to the hospital again because Max began coming down with some unusual spots on his legs as of last Saturday night. They were about dime-sized, clear, raised, fluid filled bumps, for lack of a better explanation and he went from having one on Saturday night to four by yesterday. Dr. Joshi (one of the other BMT docs that has been our primary outpatient doctor, along with Dr. Davies) and our nurse practitioner, Paula, had to break the bumps open and culture them, including using a little needle on one of them so, that was lots of fun for Max! He made it through like a champ, as usual. They are unsure what we are dealing with now but are suspecting some kind of bacterial skin infection - they mentioned the possibility of Impetigo, potentially caused by either a regular staff that lives on the skin or MRSA (methicillin-resistant staph other words, medication resistant staff...common in hospitals). we go again! As the doctor and nurse said, Max is keeping things interesting. While this hopefully will become another relatively minor bump in the marathon-long road of the BMT process, it is once again concerning and worrisome. We have already started a new oral antibiotic, Keflax, that should help clear the bumps up if they are Impetigo caused by a non-medication resistant bacteria but, if the Impetigo has been caused by MRSA, we will need a stronger antibiotic that can wreak havoc on the digestive system...ugh! We are also applying antibiotic cream to the bumps at least three times a day. Keeping me busy! We are hoping to have some results from the cultures that they collected yesterday by tomorrow and I'll let you all know as soon as I know. Of course, Impetigo is contagious too so, I am doing my best to protect the rest of us around here by washing my hands even more and wiping down everything even more often. It's a constant battle of one sort or another! Max's weakened immune system makes it much more likely that he could have this problem but it doesn't preclude the rest of us from getting it too. The biggest concern with Impetigo is that it could migrate into the blood stream and cause much larger problems. My hope is that, if this is what it is, we have caught it very early and that things will be stopped long before that could happen but, we'd appreciate any prayers you can provide for that outcome too.

We were down at the hospital last Friday as well for our scheduled Day Hospital visit and got all good news while we were there. Max's blood levels all look relatively good, although his red and white cells continue to be below normal. My brother, Patrick, went with us for our visit, as did Alex. Uncle Patrick was in the Bahamas while Max was hospitalized and wasn't able to get home to visit him during that time so this was an opportunity for him to experience a bit of what BMT Unit hospital life is like. He got a small taste of it (we were only there 3 1/2 hours) and got to meet a few of the doctors and nurses that we have come to know so well. The pictures are from our visit last Friday too...Alex was tired so he snuggled up with Max in the tiny little bed-chair for a bit...pretty cute!

The best news that we received recently came yesterday from our Nurse Practitioner. As of last Friday when the blood sample was drawn, Max was 99% engrafted with Ellee's marrow! This is such wonderful and relieving news to all of us. It means that Ellee is winning the little tug-of-war that was waging inside Max over the past few months between his remaining cells and hers! And, it proves that Dr. Davies was right...not that we doubted her. She had said all along that we just had to find the right balance with his Cyclosporine (immune suppressant) level so that Ellee's marrow could grow and take over without allowing Max's remaining cells to gain any strength. It appears we have found that right balance and things are progressing well within Max's body. Now we just need to find a way to stop him from encountering any more germs so that we don't have to deal with these other little challenges either!

Besides this excitement, things have been fairly quiet around here. Spud is settling in nicely and we are all enjoying him. He seems to be a pretty smart little guy and is getting the hang of the housebreaking more each day. He learned how to go in and out of our dog door the other night and has been letting himself in and out as needed to go potty...although not every time, unfortunately! He is a very sweet little pup and is bringing lots of joy to all of us. He is accomplishing just what I hoped for with the boys too...he is getting them up and off the couch and playing outside lots as well. The video games have hardly been on this past week and a half!

We are continually amazed at our Max's Mighty Mob team progress! At the moment, we are the leading fundraising team with Aunt Sarah Meyer topping the charts in individual fundraising for the entire walk! We have 46 people signed up to walk, including several of my family members that are coming down from Cleveland to join us in the walk...and many of you have told me that you plan to walk and just haven't signed up yet! What an awesome show of support for Max and for the fabulous hospital that has helped save his life. We cannot tell you all how thankful we are for this opportunity to show Dr. Davies and her entire team how much we appreciate them and what they have done for all of us. They are true heroes and deserve to be told that. Unfortunately, it looks like Max may not be able to join us for the walk. When we asked Dr. Davies on Friday, she didn't like the idea, saying that there were just too many people and thus, too much potential for germ exposure. But, I'm going to revisit it with her one more time at our next visit just to be sure it wouldn't work if he stayed in a stroller with a plastic cover over it and had his mask on. Either way, we will make the best of the situation and honor "Max the Magnificent" and his fantastic fight as the Mighty Mob takes to the sidewalks of Coney Island! If he can't be there, we'll take tons of pictures to be sure he knows how much people did for him. He already knows about the team and our current spot in the fundraising effort and he is quite impressed!

On another note, we are switching gears with regard to Max's Wish from the Make A Wish Foundation. We heard from them about two weeks ago as they had begun planning out Max's trip to the NBA All Star game and ran into some trouble. When they spoke to their national office about the game, they found out that the NBA can only accomodate 4 Wish Kids a year at the All Star game. Thus, Max would be unable to go for 3 years!!! He was very disappointed, to say the least, saying that his favorite players would be retired by that point! So, after talking everything through for about a week, he decided to ask to go to Disney instead. We are thrilled with this idea, of course, as we know it will be an incredible family experience and we feel that Alex and Ellee really deserved some special treatment as well. This has definitely been no picnic for the two of them either! We don't know yet when we will be able to make our trip but are hopeful that maybe we can go this spring. We are planning to talk to Dr. Davies about it more at our next appointment. It will definitely be a trip that we look forward to and I'm sure it will be one that we remember forever.

I went to a parent-teacher coffee today at Alex's school and before it started, his teacher asked me if I would briefly explain our situation to the other parents so that they would understand why Alex was not yet in school, in case their child came home talking about this "missing Alex." I have to say that it was weird. I didn't know one other person in this room and it felt like the most out-of-body experience I have had yet in this journey. I just spent about 30 seconds talking about it and I could see the somewhat shocked look on the other parent's faces. I could just imagine them wondering why it happened and thinking how awful it must have been, etc. I've reflected on these brief moments a little bit today and I just keep thinking that this is just our life now. It's just part of who we are and what we have to do. We receive lots of complements from people about how well Matt and I have handled this situation and how we have turned a crisis into a positive. Of course, we are honored to hear those kinds of things and appreciate those comments but, we both have somewhat of a hard time hearing them too. We have just done what we have had to do and have tried to make the best of it. We have been blessed to be surrounded by people in our lives that have taught us to handle things this way. Our belief is that Max is the real hero here. He has handled all of this with an incredible, upbeat attitude and a maturity well beyond his years. I was recently told by a cousin of Matt's who met one of the BMT residents that worked with Max that they call him "Amazing Max." She told Matt's cousin that every time that the doctors went in to see Max while he was in the BMT Unit, he had an amazing attitude and they would leave in awe of him. We like to think of him as Magnificent but, Amazing works too. :)

It's tough seeing your little boy endure something like this, to say the least, and we are tired. It's been a long road and we still have a ways to go before we reach the finish line. We're tired of worrying, of medicine, of hospital visits, of germs, of hand sanitizer, of being confined at home, of missing out on fun things, of not being able to go on vacations or to school or even to the grocery store or church together....but, we are so, so, so grateful. Every minute of every day we are grateful for our many blessings. Our three beautiful children, our adorable new puppy, our comfy house, our marriage, our families, our friends, our church, the constant support and love we have felt throughout this process and still feel now, the list goes on and on. Life is good...and we are making the very best of it and will continue to do so everyday for the rest of it!

Peace and love,

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

Wednesday, September 9, 2009

Day +161: A Little Ray of Sunshine

It's day +161 and we have an official new addition to the Meyer family! Spud arrived early - we picked him up on Sunday at about 1:30 pm. I think we are all falling in love! He is darling and has a perfect personality. It was definitely worth the wait for the right little guy! He has kept us quite busy the last couple of days, thus the reason that it has taken me this long to get a post up.

I was pretty much up with him the entire first night - he was crying and just heartbroken to be away from his first family. But, I applied some tough love with a crate the last two nights and he has made excellent progress already. He went from 10 pm - 6:15 am last night without a wimper and with no accidents in his crate! I was very pleasantly surprised and hope that it is a trend.

Getting a puppy has so far accomplished exactly what I was hoping it would - and more, to my surprise. We spent most of the last two days outside playing with Spud and just playing together while he sniffed around and enjoyed himself. I was looking for something that would help Max and Alex get up and off the couch a lot more and Spud seems to be doing the trick quite well so far. He is just the little ray of sunshine that we all needed right now. I said to the girl at the rescue organization that we adopted him from on Sunday that the boys really needed a friend right now and that I was sure Spud would be that for them and it is working out perfectly. Max has loved taking him out, feeding him, playing with him and just generally loving on him.

Alex also loves him, somewhat to my surprise. He seemed a bit nervous about getting a dog as he has been a bit more apprehensive about dogs since an incident that occurred a couple of years ago. He was accidentally knocked down on our driveway by a neighbors pup and had to go to the emergency room in an ambulance to have his head checked out because daddy was out of town! Anyone would be a little nervous about dogs after all that! But, we have caught him many times just sitting on the floor next to little Spud, stroking his soft back and talking sweetly to him. He also cried last night because we weren't going to take Spud to his soccer practice with us! Obviously he is bonding with Spud too.

Ellee has taken to him as well. She was playing in her little playhouse on the deck with him on Monday evening, making him some dinner (one of her favorite things to do). He was just following her around as she talked to him and told him all about the dinner she was cooking. It was adorable. She has already nicknamed him and is calling him "Spuddy Buddy".

We are enjoying this new little life. I have probably had to tell him "no" about 50 times while writing this blog as he is picking up toys to chew in here, scratching at the carpet, chewing cords, etc, etc. But, it's worth it. He is bringing a ton of joy to all of us which definitely outweighs the work. I even found Matt cuddling up with him on the couch the other evening!

Spud is the big news around here this week. Other than him, we are starting to get into our new routine. Max has tutoring every day, Monday thru Thursday for an hour to an hour and a half with a great teacher. He really likes her and is enjoying their sessions. I am working with Max's classes room mom's to find ways to get him connected with his class. We are thinking of using Skype regularly and may see if the doctors would allow a visit here or there to the playground at recess or something (probably with gloves and a mask for protection but at least he could see some buddies for a bit). Alex's teacher has started sending things home for me to work on with him until he can attend school and we are enjoying that too.

Max seems to be feeling better this week than last and the adenovirus seems to be almost gone. Here and there he still complains of his stomach a little bit but overall he has done well getting through that virus which brings me some comfort. We haven't been back down to the hospital since last Tuesday and don't have plans to be there until this Friday for our scheduled Day Hospital visit and medication infusion.

After a tough week last week, things are looking up a bit. I can definitely say that the three children that were lost have impacted my life in a positive way. They have reminded me how fragile life is and how we need to live in the moment and appreciate every minute that we have together. I can say that I am taking the extra time just to do that - to slow down and hug or cuddle a bit longer, to listen better, just to be in the moment as much as possible.

Thank you to all of you that have signed up to walk or given one of us a donation! Max's Mighty Mob is growing by the day and the funds keep pilling up for Dr. Davies and the Hematology/Oncology and BMT units at Children's. It brings me so much joy to see this progress and to know that all of you are behind it...helping us to say "thank you" and to show Max the amazing love and support that has surrounded him throughout this journey. If you plan to walk and haven't signed up yet, we would greatly appreciate it if you could sign up by September 18th if possible. I want to place a t-shirt order by then to be sure I have enough for everyone that plans to walk. Just a reminder - to sign up or donate, see my instructions from the blog post on August 27th.

As always, thank you all for your continued thoughts, prayers and support. It means the world to all of us. More soon...

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

Saturday, September 5, 2009

Day + 157: The Harsh Reality of the BMT World

It's 10:45 pm on the evening of day +157 for Max and I can't sleep. We received heartbreaking news over and over again last evening and today and Matt and I have really been distraught about it. Three of the families that we came to know while living in the BMT unit at Children's Hospital lost their children the last two days. An unthinkable and tragic ending for all three of them. One of them was an 18 year old boy named Troy who was waging a battle against BMT complications while we were in the hospital and who fought for months since we left, ultimately losing his battle yesterday, surrounded by loving friends and family. The second child was a sweet 2 year old baby boy, Andrew, who's family has been through what no family should ever have to endure. Andrew was diagnosed with a rare condition called HLH when he was a newborn baby and went through three bone marrow transplants, the third of which took place here in Cincinnati because of their world-renowned reputation for the treatment of HLH patients. He was doing well and had even been discharged from the hospital, living here in town with him mom in an apartment. Unknown complications started about 2 weeks ago, around his day +160 and ultimately took him from us. The even more unbelieveable part of this family's story is that the family discovered after Andrew was diagnosed that their other child, Matthew, now 4 1/2, also had HLH and needed a bone marrow transplant. Matthew is currently undergoing his transplant at Children's and is at about day +10. Hard to even begin to imagine what this family has endured and is continuing to endure. Andrew and Matthew's mother, Kristin, is amazing. She was a wealth of information and inspiration for us while we were in the unit and continues to be so to this day. Finally, the third child to leave this earth today was a young woman from Dayton, Keri. She was in college and enjoying life when she was told that she needed a bone marrow transplant to live. Her sister was her donor and Keri was in the room next to Max when we first arrived in the unit. We didn't get to know her family as well as the families of the other two kids because she was discharged shortly after we arrived in the unit. Unfortunately, complications later brought her back to the hospital and ultimately, she too was taken from this earth.

Obviously, Matt and I are struggling to make sense of all this suffering and hardship. As we have said before, it was somewhat easier when we were oblivious to these awful diseases but now that we know, we feel so compelled to help these kids and their families. What they endure should not have to be endured by anyone.

This horrible news tops off what has been quite a tough week for all of us. Of course, in some sense, it makes us stop and realize how blessed we are and be so very grateful for where we are right now. I can't tell you how many times I have just stopped yesterday and today and grabbed one of my kids and squeezed them so tight, kissing them and telling them how much I love them. I am so very blessed to have three beautiful children and to have Max doing so well through this extremely challenging experience. And yet, with that said, we feel that we need to acknowledge how "extremely challenging" this experience continues to be for all of us, despite all of our tremendous blessings. This week was a huge down on the BMT roller coaster. Although Max has continued to feel better and better each day and seems to be getting over the adenovirus quite well so far, he has struggled much in the more psychological and emotional ways. The reality of school being back in session has really set in for him and it is so very tough to be outside of that world.

On Wednesday evening, Max asked me, "Mommy, why did God diagnose me with Aplastic Anemia?" I wasn't sure how to respond but did my best to tell him that it really wasn't God that diagnosed him, that sometimes people just get sick because of the way we live on the earth and that it was nothing that he did wrong or there was no reason why he got sick. Then I told him that it was a good question for us to talk to our Pastor about and we agreed that we would do that soon. After that, I said, "Why do you ask, honey? Are you sad about being sick tonight? Is it bothering you today?" And he said, "Yes. I just wish I could play with my friends." The next evening, Thursday, as Matt was tucking Max in and saying their prayers (which Max usually just listens to and doesn't chime in on), Max said, "God, please continue to heal me so that I can get on that bus and go see my buddies at school." Matt could hardly contain his tears in front of Max and told me the story with tears in his eyes when I got home that night. Just imagine your child gets the chicken pox or some other contagious illness like that and is told by the school that they cannot attend for a week and that they really shouldn't play with any other children while they are at home. Now times that by 52, roughly, for the situation that we are in with Max.

This is not easy...despite all the blessings that we have been given throughout this process, it just is not easy. Now, for one minute, put yourself in the shoes of these families that we spoke of in the first paragraph above...they have been through all that we have, probably worse, and now they have lost their children. It is a pain that no one should have to endure.

I don't tell you all this to depress you. I tell you to motivate you. Do something with this information to make your life better and more meaningful. It can be something simple - take more time just to hug and cuddle your children and be sure they know how much you love them. In its way, that can be a lasting legacy of the three children that were lost. Or, do something huge - start donating blood or platelets as often as you are allowed; register to be a bone marrow donor; volunteer at the Ronald McDonald house or a children's hospital in your area... Or, do something fun and easy - walk with us in the Cincinnati Walks for Kids. It's a great way to show your support of the folks that have done everything they knew to do to save these three great kids and lost their battles as well. Sponsoring one of us will also provide more funds that can be directed at research to help prevent this from happening to all these families, including ours, in the future.

Finally, you can pray and advocate for these kids and their families. All of you that have endlessly supported us through this journey now know a whole lot about the bone marrow transplant process and how difficult it is...most people don't have the first clue what it's all about. That gives you the power to help - just by spreading the word about what you have learned. The more people that know, the more support that research and support for patients with these life threatening conditions will receive...and that will make a difference.

I don't want to sound like I'm I know so much now from what we have been through. I just want to try to motivate as many people as possible to do something to make a difference in the lives of these kids and their families so that in the future, less lives are lost and less suffering is endured.

Thanks for your continued support. It means a lot to know that people are reading, listening, thinking and praying about our family and all of the families that we have met throughout this journey. It's a long and difficult one...

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

Wednesday, September 2, 2009

Day +154: Answers and Progress

Today is day +154 and we have an answer as to what has been causing Max's "poopee" issues. We were told yesterday that his stool tested positive for adenovirus. It is a very common virus, affecting the majority of the population at least once by the time you are 10 years old. The virus infects the membranes of the respiratory tract, eyes, digestive tract and urinary tract and causes diahrrea and respiratory infection. Never thought I'd know so much about a virus! Adenovirus for a normal immune functioning person is no big deal and resolves itself on its own as the immune system fights it off and forms antibodies. For Max, this fight remains a bit bigger and will probably take him more time but, with the help of the IVIG that he receives every other week, he should be adequately protected and be able to eventually fight it off (as a reminder, the IVIG is the $16,000 per dose medication created from multiple people's immunoglobulins). In the meantime, we have to keep him extremely well hydrated and watch for any signs of worsening as there can be serious complications with adenovirus in immune suppressed people. If anything gets worse, the doctor told me yesterday that they will likely up the amount of IVIG that he is receiving in hopes that more would help him fight the virus. So, I will continue watching him closely and be ready to run down there at any point if necessary to keep him safe, as usual. Beyond that, it will mean that Max will be in "strict contact isolation" when we are at the hospital so that the germ is not passed to any other patients. In laymans terms, I have come to learn that "strict contact isolation" means that the doctors and nurses and any other hospital employee that comes into his room (including cleaning people, etc) will have to wear a special gown, mask and gloves. This (theoretically) prevents them from taking a germ from one patient to another.

It is great to have an answer and to know what we are dealing with, as well as to hear them say that they feel they can keep it in check at this point. Of course, it's still a bit scary...anytime you read a website about a germ and it says "patients with compromised immune systems are especially susceptible to severe complications of adenovirus infection" (the CDCs website), you get a bit freaked out! I'll just continue my obsessive watch over Max and his body's condition and hope that by remaining vigilant, we will ride out the germ and this bump in the road. Where we picked up this germ will always be a mystery although, I think it may have been Ellee and a simple trip to the grocery store. About three weeks ago, she came down with conjunctivitis out of no where and none of the rest of us got it. Her doctor gave me some drops and it cleared right up - it was pretty weird, not like normal pink eye. About a week and a half later, Max started with the tummy issues and Alex had his fever, followed by some congestion. My theory is that it's all adenovirus and despite the fact that I had wiped the cart down, covered it with a baby seat cover, cleaned Ellee's hands multiple times both inside and outside of the store, it got us! Goes to show how virulent these germs are (not to freak anyone out...sorry)!

We did have to make a trip down to the hospital yesterday morning per the request of our nurse practitioner, Paula. We have been continuing to tweak Max's cyclosporine level (his immune suppression medication) and made another small increase in his dose last Friday. As a result, they wanted to check the level in his blood again to be sure it is back where they want it to be. They also wanted to see how he was doing with the diahrrea and stomach issues. The biggest task we have right now is keeping Max well hydrated. Under normal circumstances on the cyclosporine, they want him to drink about 40 ounces of liquid a day. The cyclosporine is hard on the kidneys and they want them to be well flushed constantly. They closely watch a panel of renal function numbers in his blood to see how the kidneys are functioning. Those numbers continue to creep up a bit as his cyclosporine dose gets higher...and now with the diahrrea they are concerned and want him to drink even more! I am constantly pestering him to drink, drink, drink and let him have anything he wants that is not caffeinated. He can't have ICEEs, his favorite thing, or fountain soft drinks as they are out on the low bacteria diet that he must follow. But, we have popsicles galore and a fridge full of gatorade and pop for him to choose long as he drinks. We've gotta protect those kidneys!

So, I continue to have lots to worry about, as you can see! Although, I take comfort in the fact that the wonderful doctors and nurses down there are watching him closely still and have a course of action all the time, if it becomes necessary. Max really continues to do great, despite the tummy issues. We have taken a lot of bike rides lately and he will make it for 20 - 30 minutes easily. That says a lot about how he is progressing in my book! We got some fabulous news yesterday as well while we were at the hospital...Max is now 97% engrafted with Ellee's marrow again! It appears that Ellee is winning the little tug of war that was going on inside him and his bones are filling up more and more with her marrow! His cell counts are all looking good too. His white count is the highest it has been in months without the help of any medications, his platelet count remains stable in the normal range and his red cells continue to improve. All great news and wonderful progress!

We had a couple of other exciting things happen this week. Max started his tutoring yesterday and has a really nice home schooling teacher. I think it is going to be very enjoyable for him. We found out last night that we will probably get our puppy, Spud, next Wednesday! We can't wait to have him here - he is going to give us so much to do! We are getting things ready for his arrival and brushing up on puppy potty training, etc. I also spoke with Alex's teacher this week and we coordinated ways to get him the plans and materials she will be using each week so that I can work with him until he can return to school in a few months. Everyone was very understanding and offerring to do whatever they could to help Alex with school also. My brother, Patrick is back in town so we had fun last night having a dance party with him (picture with Max in the air). And finally, they finished paving our road the other day and the kids really enjoyed watching the steam roller (or the roller coaster, as Ellee kept calling it...another picture of them watching it out the storm door window).

Life is progressing. We are beginning to get somewhat of a fall routine around here and are enjoying our extra free time to take bike rides, walks, play games, dance, etc. Things remain challenging but we are getting there, one day at a time. The light at the end of the tunnel keeps getting brighter and brighter, despite the ups and downs along the way. I have been struck by something funny the last fews days that I thought I'd share with you all. I think it gives some perspective on where we are with things. Two days ago, Max and I rode our bikes down Nagel and then last night all of us took a bike ride (Matt with the two younger ones in a cart on the back of his bike). Of course, Max has his mask on since he is outside. I noticed several people looking at us from their cars as they drove past and I thought to myself, "their probably thinking, what a nice night for a bike nice that a family is out for a ride together." Finally, it dawned on me that they were looking at Max in the mask and probably wondering what was going on with him. I think this shows two big things: how normal this has all become to us and how much we are going on with our lives, enjoying them as much as possible while it is all going on, oblivious to how "horrible" it must look from the outside! We have tried to keep a positive attitude and upbeat perspective on this situation all along and have done our darndest to make the best of it!

That's it for another week - a busy one but a good one again. Thank you, again to all of you that have signed up to walk with us in October or sponsored one of our team members. I think we may be one of the top teams at this rate...let's go for it (check out our team on: )! We are looking forward to that event and to being able to show the hospital and all of our caregivers how eternally grateful we are for what they have done for all of us!

More soon...

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